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Disabled Lives Matter is more than just a Podcast, it’s a global movement. Each week we will interview individuals who have disabilities to hear how they positively contribute to, and impact society. We will also learn about their experiences… the good, the bad, and the ugly, in terms of business, government, and society at large. Issues such as bias, discrimination, inequality, governmental impact, and more will be explored. As a movement, Disabled Lives Matter wants to not only provide information, but correct rampant disinformation and bias. As this podcast and subsequent movement grows, so will its impact on process, practice, and more importantly, outcomes. We want our listeners to step-up and step-out to be a force for change when it comes to how people with disabilities are treated, portrayed, and valued.
Episodes
Thursday Aug 10, 2023
Thursday Aug 10, 2023
Season 03, Episode 07
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Michael Kutcher
INTRO [Music playing in background]
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VOICEOVER: Disabled Lives Matter. Here we go.
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VOICEOVER: Hello,
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VOICEOVER: and welcome to this week's episode of the Disabled Lives Matter podcast.
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VOICEOVER: Let's welcome co-hosts Nadine Vogel and Norma Stanley.
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NADINE VOGEL: Hello everyone. This is Nadine Vogel. I am joined by a amazing co-host,
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NADINE VOGEL: Norma Stanley, to bring you another episode of Disabled Lives Matter.
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NADINE VOGEL: As you all know, we are more than a podcast. We are a movement. Hey, Norma,
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NADINE VOGEL: how's it going?
NORMA STANLEY: I'm great. How are you?
NADINE VOGEL: I am,
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NADINE VOGEL: I am not just good.
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NADINE VOGEL: I am off the charts delighted because we have the amazing Michael Kutcher
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NADINE VOGEL: as our guest today. And I,
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NADINE VOGEL: for those of you who have not heard Michael present or engaged with him,
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NADINE VOGEL: let me just say,
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NADINE VOGEL: I said to him we could have like a whole day session and that we only have a
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NADINE VOGEL: half hour for him, but let's get started. So, Michael, welcome.
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MICHAEL KUTCHER: Hey, Nadine. Hey, Norma. How are you guys?
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NORMA STANLEY: Great.
NADINE VOGEL: We are good. We are good. So, I mean,
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NADINE VOGEL: you let, let's start with, you know, just who you are, what you do,
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NADINE VOGEL: and just kind of, you know, what, what's the life been like? Well,
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NADINE VOGEL: let's talk about, you know, the last, you know, how many years and, you know,
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NADINE VOGEL: two minutes,
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NADINE VOGEL: but just to give everyone a sense of who you are and what you do and why.
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MICHAEL KUTCHER: Yeah. Uh, who I am. Um, I mean, you state by name. I'm Michael Kocher. Um,
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MICHAEL KUTCHER: you know, I, um, um,
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MICHAEL KUTCHER: who I am, that's a great question. Right.
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MICHAEL KUTCHER: You know, I'm, uh, I'm disability rights advocate, I would say,
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MICHAEL KUTCHER: you know, and also keynote speaker. Mm-hmm. Um, I've, you know,
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MICHAEL KUTCHER: been through a number of challenges throughout my life that have been really
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MICHAEL KUTCHER: gifts to me, that have allowed me to,
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MICHAEL KUTCHER: you know,
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MICHAEL KUTCHER: experience different things and share them with the community,
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MICHAEL KUTCHER: whether it be, you know, the disability community or others. And, uh,
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MICHAEL KUTCHER: walk them through my story and, and hopefully inspire them and motivate them,
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MICHAEL KUTCHER: um, about overcoming obstacles and challenges and, um, just kind of,
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MICHAEL KUTCHER: you know, speak to people about the challenges that have faced in life,
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MICHAEL KUTCHER: and hopefully give them some, some sense of, uh,
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MICHAEL KUTCHER: inspiration and some sense of, of hope. Um, and then, you know,
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MICHAEL KUTCHER: as I've,
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MICHAEL KUTCHER: I went on that journey and came on that journey of telling my story, I,
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MICHAEL KUTCHER: I found myself, um, being more the advocate than what I thought I would be.
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MICHAEL KUTCHER: Uh, so that's been a, a fun journey for me as well. Um,
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MICHAEL KUTCHER: and I'm a, uh, soon to be author as well, so the lot going on in my world.
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MICHAEL KUTCHER: Um, but, um, yeah, I hope that answers kind of who I am and why.
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NADINE VOGEL: Yeah,
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NADINE VOGEL: Absolutely. Absolutely. And you know, you talk about challenges as gifts.
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NADINE VOGEL: So let's start with, you've had many medical challenges, right? So,
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NADINE VOGEL: started out, you were a surprised twin at birth. You ended up,
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NADINE VOGEL: you know, you had failure to thrive issues when you were first born.
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NADINE VOGEL: You ended up with cerebral palsy. You, I think it was at age 13,
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NADINE VOGEL: experienced, um, heart failure and, and had to have a heart transplant.
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NADINE VOGEL: Um, I think those are just a, dare I say, some of the highlights
MICHAEL KUTCHER: Is that not enough.
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NADINE VOGEL: And and I think that, you know, anybody that would hear that would be like,
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NADINE VOGEL: okay, well if I, I would've been done after one of them, let alone, let alone,
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NADINE VOGEL: right?
MICHAEL KUTCHER: Yeah.
NADINE VOGEL: And I think them and really said, okay, there's,
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NADINE VOGEL: there's a, a fragility to life, but what do we do with that?
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NADINE VOGEL: How do we look at those, like you said, as gifts and, and what do we do?
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NADINE VOGEL: So talk to us about how did you take those things and see them as gifts
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NADINE VOGEL: rather than, oh my gosh, what am I gonna do with this? Am I gonna die? You know,
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NADINE VOGEL: I just wanna crawl up in a hole.
MICHAEL KUTCHER: Yeah.
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MICHAEL KUTCHER: And I think, I think that that's kind of the thing that I want people to,
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MICHAEL KUTCHER: to kind of maybe take away, um, from my story is,
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MICHAEL KUTCHER: you know, life is hard. Uh,
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MICHAEL KUTCHER: life throws you curve balls every single day,
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MICHAEL KUTCHER: whether it just be through your daily obstacles throughout life,
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MICHAEL KUTCHER: or whether it be the big challenges. Um,
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MICHAEL KUTCHER: but really what's the alternative, right? I mean, when you're,
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MICHAEL KUTCHER: when you're faced with the circumstance of death,
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MICHAEL KUTCHER: you have two choices. You know, either I keep fighting or I give up.
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MICHAEL KUTCHER: Um, and if you give up, then that's your own choice. Um,
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MICHAEL KUTCHER: but let's just say I wasn't ready to give up yet. Um, and,
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MICHAEL KUTCHER: you know, I think that that life's full of choices and that we have to make,
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MICHAEL KUTCHER: and some are good, some are bad, uh, but they all lead us down a different road,
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MICHAEL KUTCHER: you know?
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MICHAEL KUTCHER: And hopefully even the bad choices will lead us down a road that teaches us
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MICHAEL KUTCHER: a lesson to hopefully put us back on the right road, you know? Um,
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MICHAEL KUTCHER: and, you know, overcoming the obstacles and, and everything,
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MICHAEL KUTCHER: and just really, it, it was,
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MICHAEL KUTCHER: it was my choice that I had to make to either be a victim or be a victor.
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MICHAEL KUTCHER: And I chose to be a victor because, um,
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MICHAEL KUTCHER: it's the only thing I've ever known. Um,
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MICHAEL KUTCHER: and I think that the world's a little,
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MICHAEL KUTCHER: the world's a better place when we,
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MICHAEL KUTCHER: when we switch that kind of perspective,
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MICHAEL KUTCHER: and we start being victors and, and less victims.
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NADINE VOGEL: Absolutely. Absolutely. And so, you know, it's interesting, as we,
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NADINE VOGEL: we always say, you never know what you,
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NADINE VOGEL: what you say that could impact someone's life, good, bad, or indifferent.
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NADINE VOGEL: So you've had many encounters with, with medical professionals.
MICHAEL KUTCHER: Mm-hmm.
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NADINE VOGEL: You've had, you have an amazing family, friends. Are there,
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NADINE VOGEL: is there one or two people and or instances that really
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NADINE VOGEL: jumped out that contributed to you saying, okay, I am the best.
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NADINE VOGEL: I can't, I got this.
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MICHAEL KUTCHER: Yeah. I mean, I think that, you know,
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MICHAEL KUTCHER: if you're asking kind of what motivates me
NADINE VOGEL: mm-hmm.
MICHAEL KUTCHER: You know, um,
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MICHAEL KUTCHER: I, I think there's several people in my life that motivated me. Um,
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MICHAEL KUTCHER: you know, my, my twin brother being one of them, um,
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MICHAEL KUTCHER: has always kind of been by my side and helped me throughout the years and,
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MICHAEL KUTCHER: and really guided me as a hero. Um,
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MICHAEL KUTCHER: and he motivates me every single day. Um, and then,
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MICHAEL KUTCHER: you know, my son. So I've got, you know, an 18 year old son, um,
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MICHAEL KUTCHER: that just seeing him thrive every single day. And, you know,
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MICHAEL KUTCHER: he is going off college next year,
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MICHAEL KUTCHER: and that's a great accomplishment for all of us. And, um,
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MICHAEL KUTCHER: I think that, that, you know, yes,
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MICHAEL KUTCHER: I have a compelling story and I have an inspirational story,
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MICHAEL KUTCHER: but if people really look at their own life,
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MICHAEL KUTCHER: I think we all have stories. You know, and, and you,
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MICHAEL KUTCHER: you talk about you never know when you can say something to impact someone
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MICHAEL KUTCHER: else's life. Um, I,
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MICHAEL KUTCHER: I think that the most important thing we can do as a community,
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MICHAEL KUTCHER: whether it be a disability community or whether it be any community,
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MICHAEL KUTCHER: is to share stories.
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MICHAEL KUTCHER: Because you may not think you have a powerful story,
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MICHAEL KUTCHER: but someone else probably does. I mean,
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MICHAEL KUTCHER: I started this journey out by a friend of mine
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MICHAEL KUTCHER: that, you know, heard me speak one time and said,
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MICHAEL KUTCHER: oh my goodness, you've gotta go forward with this.
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MICHAEL KUTCHER: You've got a powerful speech or a powerful story.
NADINE VOGEL: Right.
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MICHAEL KUTCHER: Had they not said that to me, I probably wouldn't have shared it.
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NORMA STANLEY: Yeah. I, I totally can relate.
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NORMA STANLEY: And it's one of the things I wanted to ask you as,
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NORMA STANLEY: as you found your voice,
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NORMA STANLEY: what is the most important message that you wanna make sure para like myself?
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NORMA STANLEY: Because I have a daughter who was b cerebral palsy, and she doesn't talk,
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NORMA STANLEY: and she also, um, she does, she's intellectually, um,
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NORMA STANLEY: challenged as well as physically. Um, so basically I'm her voice,
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NORMA STANLEY: but to parents like myself who may not have children who have the same
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NORMA STANLEY: capabilities, what kind of message do,
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NORMA STANLEY: would you share to help those of us who are the voices for our children
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NORMA STANLEY: and making sure that they can maximize their potential?
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MICHAEL KUTCHER: Yeah, I think that, you know, it's important to
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MICHAEL KUTCHER: realize your, your capabilities, right?
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MICHAEL KUTCHER: And I always tell a story about a little girl that inspired me,
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MICHAEL KUTCHER: you know, um, throughout the years to, to, you know,
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MICHAEL KUTCHER: stand up and speak and be a voice. Um,
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MICHAEL KUTCHER: and she didn't have all the abilities that you and I have Norma. Uh,
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MICHAEL KUTCHER: but I always said that she had the ability to inspire people, inspire people.
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MICHAEL KUTCHER: So I, I think that it's important to,
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MICHAEL KUTCHER: to look at people's gifts and their abilities. And for parents, um,
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MICHAEL KUTCHER: you know, I, I understand everyone had different severities and disabilities.
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MICHAEL KUTCHER: Your daughter and I both have the, the same disabilities, cerebral palsy,
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MICHAEL KUTCHER: but it's different for between us. But I, I think it's,
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MICHAEL KUTCHER: it's important for parents to really look at
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MICHAEL KUTCHER: their children as, you know,
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MICHAEL KUTCHER: how do I say? Like, a lot of parents say, I meet,
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MICHAEL KUTCHER: kind of have this vision of victim in
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MICHAEL KUTCHER: a way, right?
NORMA STANLEY: Yep.
MICHAEL KUTCHER: And of why,
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MICHAEL KUTCHER: why did my child have to go through this, and why are they going through this?
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MICHAEL KUTCHER: And there's a sense of frustration there too,
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MICHAEL KUTCHER: I'm sure.
NORMA STANLEY: Yes.
MICHAEL KUTCHER: But there's lessons there too,
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MICHAEL KUTCHER: right? There's lessons
NORMA STANLEY: absolutely.
MICHAEL KUTCHER: To,
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MICHAEL KUTCHER: to be given to you as a parent.
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MICHAEL KUTCHER: There's lessons that you can teach your communities
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NORMA STANLEY: Absolutely.
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MICHAEL KUTCHER: About your child with disabilities. Um, so, you know,
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MICHAEL KUTCHER: you both have heard me speak and heard me talk about perspective and how we
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MICHAEL KUTCHER: need to change our perspective and change our mindset.
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MICHAEL KUTCHER: And I think that's part of it,
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MICHAEL KUTCHER: is changing the perspective and changing the mindset of,
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MICHAEL KUTCHER: of how we view people with disabilities. Yeah. Um,
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MICHAEL KUTCHER: and you know, it's not easy.
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MICHAEL KUTCHER: I'm, I'm not gonna say that your frustrations are gonna go away,
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MICHAEL KUTCHER: or that every day's gonna be a good day because we all have bad
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MICHAEL KUTCHER: days and we all have frustrations.
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MICHAEL KUTCHER: But if I can help people change that mindset a little bit, um,
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MICHAEL KUTCHER: then I hope I'm doing some good.
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NORMA STANLEY: Amen. Amen. And both, you know, Nadine,
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NORMA STANLEY: Nadine and I both have children who have been through some challenges,
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NORMA STANLEY: and I think Nadine is an awesome example, um,
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NORMA STANLEY: of, of overcoming and,
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NORMA STANLEY: and making a space for excellence, not just for her family,
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NORMA STANLEY: but for the people who need it, for companies and for the communities. And I'm,
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NORMA STANLEY: you know, I'm, I'm like, she's, I'm a biggest cheerleader, but I, I,
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NORMA STANLEY: I wanna do the same thing for my daughter and for the communities and the people
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NORMA STANLEY: that I may have influence over. Because again, it's, it's not a death nail.
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NORMA STANLEY: It's, it's a,
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NORMA STANLEY: it's an opportunity to learn some new things about yourself as well as,
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NORMA STANLEY: um, your child and give them the opportunity.
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NORMA STANLEY: My daughter models in her wheelchair, she can't talk, but she,
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NORMA STANLEY: she could play in some outfits.
MICHAEL KUTCHER: Yeah. I
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MICHAEL KUTCHER: Sure. She's beautiful. Right? And, and, you know, I think it's just, no,
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MICHAEL KUTCHER: I think it's just changing the mindset,
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MICHAEL KUTCHER: and I think that the disability community is, is,
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MICHAEL KUTCHER: but I think that it's our,
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MICHAEL KUTCHER: it's our job to help the rest of the communities.
NORMA STANLEY: mm-hmm.
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MICHAEL KUTCHER: Understand that as well. And that's why I say that, you know, we don't have,
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MICHAEL KUTCHER: you know, I'm,
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MICHAEL KUTCHER: you've heard my me speak about my term disability and, and how I,
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MICHAEL KUTCHER: I feel that we're all just kind of different,
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MICHAEL KUTCHER: whether you have a disability or not,
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MICHAEL KUTCHER: everyone's different and who would wanna be the same. And I think that,
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MICHAEL KUTCHER: you know, my perspective is,
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MICHAEL KUTCHER: is one that I'd like other people to kind of adopt and, and to, to,
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MICHAEL KUTCHER: to just view people from a different lens.
NADINE VOGEL: Mm-hmm.
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NADINE VOGEL: That's absolutely, especially, especially in a corporate environment, right. We,
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NADINE VOGEL: we really need to change that up. Um, so Michael, we hear,
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NADINE VOGEL: you know, a lot of our audience are adults who have disabilities,
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NADINE VOGEL: and one of the things we hear is, okay, I was born with this disability,
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NADINE VOGEL: or I had this accident, isn't that enough? Now I get smacked with this,
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NADINE VOGEL: and now I get smacked with that. And, and right when we hear this, and,
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NADINE VOGEL: and one of the things we've been hearing about a lot is the issues of mental
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NADINE VOGEL: health, of, of folks with disabilities just after a while. Like,
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NADINE VOGEL: I can't take any more blows. Right. How do I keep going?
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NADINE VOGEL: How do I keep doing this? And I think you are the, the epitome of that.
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NADINE VOGEL: Um, so you talk about changing perspective, changing the narrative.
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NADINE VOGEL: How do individuals with disabilities approach doing that for themselves when
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NADINE VOGEL: they feel like they just can't take one more blow?
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MICHAEL KUTCHER: I mean, it's, it's, it's hard to, to just say it this simple,
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MICHAEL KUTCHER: but you just gotta get up, right? You just gotta,
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MICHAEL KUTCHER: you know, it's, you know, I,
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MICHAEL KUTCHER: part of my blow was a fight for survivor.
NADINE VOGEL: Mm-hmm.
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MICHAEL KUTCHER: Right? And so I wake up every day
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MICHAEL KUTCHER: just thankful that I woke up.
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NADINE VOGEL: Right.
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MICHAEL KUTCHER: You know, and, and I think that, like I said,
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MICHAEL KUTCHER: life is full of struggles. Life is full of heartache, grief,
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MICHAEL KUTCHER: frustration, whatever you wanna call it.
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MICHAEL KUTCHER: But until you get in the mindset that you're not gonna give up,
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MICHAEL KUTCHER: then you fall back to the victim.
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NADINE VOGEL: Yes.
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MICHAEL KUTCHER: Sense of, of things. And it really is, it really is a mindset.
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NADINE VOGEL: Mm-hmm.
MICHAEL KUTCHER: Um, I'm not this happy go lucky guy all the time.
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MICHAEL KUTCHER: Believe me, I'm, I have my days,
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MICHAEL KUTCHER: and it is okay to have your days.
NORMA STANLEY:Mm-hmm.
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MICHAEL KUTCHER: Um,
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MICHAEL KUTCHER: We all have 'em because you know what, we're all human. NADINE VOGEL: Exactly.
MICHAEL KUTCHER: Um,
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MICHAEL KUTCHER: but there's good that you're doing in the world, right. And,
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MICHAEL KUTCHER: and there's good that you're doing for your family.
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MICHAEL KUTCHER: There's good that you're doing for your friends just by being here.
NADINE VOGEL: Right.
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MICHAEL KUTCHER: Just by being you. And there's people that are around you that love you and,
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MICHAEL KUTCHER: and support you, and, you know, I,
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MICHAEL KUTCHER: I think that's important to,
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MICHAEL KUTCHER: to build that community and build that support group around you.
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NADINE VOGEL: Right. Well, you, you had, um, an opportunity to present, uh,
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NADINE VOGEL: a few months ago to a room full and audience full of corporate
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NADINE VOGEL: executives
MICHAEL KUTCHER: mm-hmm.
NADINE VOGEL: Right. Hearing your story. And
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NADINE VOGEL: I would like for you to share with us when you're, you know, 'cause,
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NADINE VOGEL: 'cause Norma brought up, okay, we're talking to parents, right.
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NADINE VOGEL: Parents of children with disabilities.
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NADINE VOGEL: Now you were just talking to individuals who have disabilities,
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NADINE VOGEL: but when you're talking to the executive community and the executive teams,
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NADINE VOGEL: you know, might be Springboard, we work with them all the time, but,
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NADINE VOGEL: but sometimes I feel like, you know, no matter what I do, I, we can't,
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NADINE VOGEL: we don't make the change. So,
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NADINE VOGEL: so talk to us about how you see them making
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NADINE VOGEL: the change,
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NADINE VOGEL: how they should be changing their narrative from an organizational standpoint
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NADINE VOGEL: to, you know, because separate from being a disability advocate,
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NADINE VOGEL: you're a success, you have your own career,
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NADINE VOGEL: a successful career in the financial services industry.
MICHAEL KUTCHER: Yeah.
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NADINE VOGEL: So you are also an example of that. So how do you,
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NADINE VOGEL: what do, what's your message to these employers?
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MICHAEL KUTCHER: Yeah, I think, I think, I think first of all, um,
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MICHAEL KUTCHER: it's imperative that they,
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MICHAEL KUTCHER: they realize that, um,
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MICHAEL KUTCHER: disabilities are all around them.
NADINE VOGEL: Mm-hmm.
MICHAEL KUTCHER: They just don't realize it.
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MICHAEL KUTCHER: I think it's important for them to realize that some of their top performers
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MICHAEL KUTCHER: probably have disabilities. And
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MICHAEL KUTCHER: the problem with the corporate culture and where I think it needs
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MICHAEL KUTCHER: to start
NORMA STANLEY: mm-hmm.
MICHAEL KUTCHER: It's transparency,
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MICHAEL KUTCHER: acceptance. And once you build a culture of acceptance,
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MICHAEL KUTCHER: people start coming outta the woodworks and talking about
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MICHAEL KUTCHER: their disability and their need for support and their need for
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MICHAEL KUTCHER: assistance to help them be a better employee.
NORMA STANLEY: Right.
MICHAEL KUTCHER: But if,
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MICHAEL KUTCHER: if you close down the walls and you don't even
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MICHAEL KUTCHER: talk about the subject,
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MICHAEL KUTCHER: or even make it view as being acceptable,
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MICHAEL KUTCHER: then I think that you're doing a disservice to your employers,
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MICHAEL KUTCHER: your employees, because, you know,
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MICHAEL KUTCHER: there's a ton of disabilities out there.
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MICHAEL KUTCHER: They're just invisible.
NADINE VOGEL: Right.
MICHAEL KUTCHER: It could be dyslexia,
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MICHAEL KUTCHER: um, you know, they don't, they don't have to be physical disabilities, you know,
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MICHAEL KUTCHER: speech impediments, hearing impediments, um,
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MICHAEL KUTCHER: they're all around us. So I think it's important for, I'm,
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MICHAEL KUTCHER: I'm glad that diversity, equity, inclusion has,
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MICHAEL KUTCHER: you know,
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MICHAEL KUTCHER: kind of gone mainstream in the last few years,
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MICHAEL KUTCHER: so to speak. Um, we're hearing more about it. Um,
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MICHAEL KUTCHER: but to be honest with you,
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MICHAEL KUTCHER: I don't feel that we're hearing enough about disability within that
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MICHAEL KUTCHER: conversation.
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NORMA STANLEY: That's
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NORMA STANLEY: right.
MICHAEL KUTCHER: And that's, that's no disrespect to,
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MICHAEL KUTCHER: you know, other communities out there at all. Um,
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MICHAEL KUTCHER: but I think it's difficult for corporate because I think the
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MICHAEL KUTCHER: corporate feels, they don't know how to have the conversation.
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MICHAEL KUTCHER: They don't know how to approach it now to it. It's a lot like,
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MICHAEL KUTCHER: like, you know, okay,
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MICHAEL KUTCHER: if you see a person with a disability on the street,
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MICHAEL KUTCHER: you know, a lot of people are like, how do I approach them? What do I say?
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MICHAEL KUTCHER: What do I do? You know, how do I act? Um,
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MICHAEL KUTCHER: I think that some people in corporate are afraid of those
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MICHAEL KUTCHER: conversations because they don't know where to start.
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MICHAEL KUTCHER: Um,
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MICHAEL KUTCHER: but I think that's the most important part in knowing where to start and
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MICHAEL KUTCHER: actually starting that conversation and embracing that community.
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MICHAEL KUTCHER: Sorry, long-winded answer,
NADINE VOGEL: but No, no,
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NADINE VOGEL: No. But I think it's so important. 'cause one of the things Norma and I,
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NADINE VOGEL: you know, talk about is, you know, we have, we have the A-D-A,
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NADINE VOGEL: the Americans with Disabilities Act in the U.S.
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NADINE VOGEL: We have equivalents in other countries,
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NADINE VOGEL: and it's important that we have the legislation.
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NADINE VOGEL: I think legislation gets the conversation started.
MICHAEL KUTCHER: Yeah.
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NADINE VOGEL: I don't think it's the end all and be all, but,
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NADINE VOGEL: and I would love your perspective on this.
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NADINE VOGEL: What we tend to find is check the box mentality.
NORMA STANLEY: Yes.
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NADINE VOGEL: People with disabilities check.
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NADINE VOGEL: I did a training last year about disability check.
MICHAEL KUTCHER: Yeah.
NADINE VOGEL: Uh,
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NADINE VOGEL: what are your thoughts on that?
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MICHAEL KUTCHER: No, I mean, it's 100% it is, you know,
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MICHAEL KUTCHER: let me stand up a, an E-R-G group check,
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NADINE VOGEL: Right?
NORMA STANLEY: Mm-hmm.
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MICHAEL KUTCHER: And sure, I mean, great, you start a group, awesome.
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MICHAEL KUTCHER: But what are you doing? How are you pushing forward? What's your momentum?
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MICHAEL KUTCHER: How are you driving that engagement and
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MICHAEL KUTCHER: conversation to your entire workforce? You know,
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MICHAEL KUTCHER: you had mentioned that, you know, I have a career. I'm successful, successful.
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MICHAEL KUTCHER: I, I've been fortunate enough to be the same organization for 20 years.
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MICHAEL KUTCHER: And, um, you know,
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MICHAEL KUTCHER: I hid my disability for a long time because of, you know,
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MICHAEL KUTCHER: not feeling comfortable in the workspace to
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MICHAEL KUTCHER: talk to my employer about it.
NADINE VOGEL: Right.
MICHAEL KUTCHER: Um,
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MICHAEL KUTCHER: because of a fear of what they thought couldn't do, or,
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MICHAEL KUTCHER: you know, not signing difficult tasks to me. Um,
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MICHAEL KUTCHER: but yeah, I recently did the same speech I did for you,
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MICHAEL KUTCHER: for your group with my employer.
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MICHAEL KUTCHER: They were
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MICHAEL KUTCHER: Like, no. Um,
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MICHAEL KUTCHER: but to tell you the truth, nothing changed. Um,
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MICHAEL KUTCHER: still look at me as a, and I'm seeing the employee, you know,
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MICHAEL KUTCHER: I do a great job. Been there for a long time. Um,
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MICHAEL KUTCHER: and now I feel more comfortable, more comfortable. So I think it's, it's,
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MICHAEL KUTCHER: I guess it's twofold, right? You need the corporation to be
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MICHAEL KUTCHER: willing to have the discussion,
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MICHAEL KUTCHER: but you also need a brave employee to be willing to have the conversation
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MICHAEL KUTCHER: as well.
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NADINE VOGEL: No, absolutely. It's, it's, everybody has to come together. MICHEAL KUTCHER: Yeah.
NADINE VOGEL: So, um,
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NADINE VOGEL: because folks who may be listening to this have not had the opportunity
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NADINE VOGEL: that we've had to hear you deliver a keynote presentation, um, and,
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NADINE VOGEL: and I'm sure many of the work for big companies,
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NADINE VOGEL: I would like to hear you deliver a keynote presentation. What is, what is,
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NADINE VOGEL: as we're running outta time,
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NADINE VOGEL: what is the best way folks can get in touch with you? Um,
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NADINE VOGEL: learn more about your presentations. I really encourage all of our listeners,
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NADINE VOGEL: you need to check Michael out. It's amazing. So Michael, yeah.
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MICHAEL KUTCHER: Well, thank you for the plug. Feel free to, you know,
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MICHAEL KUTCHER: go to my website, uh, michaelkutcher.com.
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MICHAEL KUTCHER: Otherwise you can find me on social. Um, um,
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MICHAEL KUTCHER: probably the most that I use the most is probably Instagram at
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MICHAEL KUTCHER: @mkutch. Um, but yeah, I'd be happy to, you know,
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MICHAEL KUTCHER: talk to other organizations. It's an important, important topic. And,
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MICHAEL KUTCHER: and as you mentioned, my conversation, um,
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MICHAEL KUTCHER: go beyond just disability that I think that a lot of people could,
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MICHAEL KUTCHER: could benefit in their life, benefit in
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MICHAEL KUTCHER: Their lives.
NADINE VOGEL: Yeah. And I, and I think that that is important.
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NADINE VOGEL: We talk about intersection intersectionality a lot, right?
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NADINE VOGEL: None of us are one thing, right? So we may be disabled,
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NADINE VOGEL: we may be African American, we may be Chinese.
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NADINE VOGEL: We could actually have all those things together, right?
MICHAEL KUTCHER: Yeah.
NADINE VOGEL: And you know,
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NADINE VOGEL: you mentioned about resource groups, you know, employee resource groups,
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NADINE VOGEL: they're great, but they tend to put us into one thing, and we're not.
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NADINE VOGEL: And that is, and that I think is really important about your presentation,
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NADINE VOGEL: because you really bring the intersectional
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NADINE VOGEL: life experiences that many of us have together.
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NADINE VOGEL: Disability happens to be one of your experiences. You've had many of them,
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NADINE VOGEL: but, but it is one piece, right. Of who you are. And I think that, that alone, sends the message we want them to know.
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NADINE VOGEL: so in the like 60 seconds we have left, Michael,
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NADINE VOGEL: what have we not asked you? What message do you wanna leave with our listeners?
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NORMA STANLEY: I wanna know about your book.
NADINE VOGEL: Yeah. You wanna
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MICHAEL KUTCHER: Quiet Norma, Norma's quiet, the whole podcast, and then she just,
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MICHAEL KUTCHER: I wanna hear about your book.
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NADINE VOGEL: Yeah, I,
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MICHAEL KUTCHER: You know, it's been a slow, a slow go, um, for,
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MICHAEL KUTCHER: for a while. You know, this is, I guess to your point here, Nadine I'll leave,
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MICHAEL KUTCHER: I'll leave with this. Um, I,
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MICHAEL KUTCHER: I've been speaking to audiences for 10, 15 years and, you know,
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MICHAEL KUTCHER: it is always been a pipe dream of mine to put my book down on paper and put my
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MICHAEL KUTCHER: story down on paper and write a book. And I never really
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MICHAEL KUTCHER: got off my tail and did it.
NADINE VOGEL: Right.
MICHAEL KUTCHER: It's,
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MICHAEL KUTCHER: it's always one of those bucket list things. I don't have the money to do it,
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MICHAEL KUTCHER: and I'll do it later. Um, well, about five years ago, and, you know,
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MICHAEL KUTCHER: and through Covid, I, I decided, hey, let's, let's actually do this.
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MICHAEL KUTCHER: Um, so it's been a long time coming. Um, you know, I'm,
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MICHAEL KUTCHER: I'm currently speaking with publishers to kind of find a,
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MICHAEL KUTCHER: a proper publisher and get it published.
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MICHAEL KUTCHER: So I'm hoping in the next year so we can,
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MICHAEL KUTCHER: we can finally have something on the shelf. And, and Nadine,
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MICHAEL KUTCHER: I'll let you know when it comes out and I'll, I'll give you a signed copy.
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MICHAEL KUTCHER: How about that?
NADINE VOGEL: There
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NADINE VOGEL: You go. And I'm gonna change your card for one second because you said,
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NADINE VOGEL: I hope in the next year,
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NADINE VOGEL: so I'm gonna change your narrative to say in the next year,
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NADINE VOGEL: by the end of the next year, it will be out and
MICHAEL KUTCHER: It
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MICHAEL KUTCHER: Better be,
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NADINE VOGEL: And you,
NORMA STANLEY: It will be.
NADINE VOGEL: you'll have a copy of it. How's that?
MICHAEL KUTCHER: Yeah,
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MICHAEL KUTCHER: Yeah, for sure. It better be. And I, I guess I'll just leave your audience with,
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MICHAEL KUTCHER: with that message of, you know,
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MICHAEL KUTCHER: time is just so precious and we don't have enough of
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MICHAEL KUTCHER: it. And, um, uhhuh, it's something that,
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MICHAEL KUTCHER: that comes and goes for all of us.
NADINE VOGEL: Mm-hmm.
MICHAEL KUTCHER: Um,
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MICHAEL KUTCHER: I
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NORMA STANLEY: Life's not promised,
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MICHAEL KUTCHER: And we only have, it is not promised.
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MICHAEL KUTCHER: So if you have something you need to do, something,
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MICHAEL KUTCHER: you need to say, someone you need to talk to,
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MICHAEL KUTCHER: don't wait. Do it. You know? And,
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MICHAEL KUTCHER: and I guarantee you you'll feel good when you do. And,
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MICHAEL KUTCHER: and you'll check that box and mark that off your bucket list or whatever type of
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MICHAEL KUTCHER: list you might have.
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NORMA STANLEY: Amen.
NADINE VOGEL: Amen to that. Exactly. What a great way to end.
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NADINE VOGEL: So for our listeners, you've been listening to Michael Kutcher,
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NADINE VOGEL: the amazing Michael Kutcher, and all his words of wisdom. And, um,
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NADINE VOGEL: I hope you'll reach out to him on his website, Instagram, social, get in touch,
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NADINE VOGEL: hear more. We wanna,
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NADINE VOGEL: Norma and I just wanna thank you for joining us on another episode of Disabled
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NADINE VOGEL: Lives Matter. And always remember, we have more than just the podcast.
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NADINE VOGEL: We are a movement. So Norma, see you soon, Michael.
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NADINE VOGEL: Definitely see you soon.
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MICHAEL KUTCHER: Thank you all.
NADINE VOGEL: Okay,
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Everybody, be blessed. Bye-bye.
CLOSING COMMENT [Music playing in background.]
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VOICEOVER: Thank you for listening to this week's episode of Disabled Lives Matter.
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VOICEOVER: We look forward to seeing you next Thursday. Have a great week.
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Thursday Jun 22, 2023
Thursday Jun 22, 2023
Season 03, Episode 06
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Heather Ehle
INTRO [Music playing in background]
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VOICEOVER: Disabled Lives Matter. Here we go.
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VOICEOVER: Hello,
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VOICEOVER: and welcome to this week's episode of the Disabled Lives Matter podcast.
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VOICEOVER: Let's welcome co-hosts Nadine Vogel and Norma Stanley.
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NADINE VOGEL: Hello everyone,
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NADINE VOGEL: and welcome to today's episode of Disabled Lives Matter.
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NADINE VOGEL: We are more than a podcast. We are a movement. I'm Nadine Vogel,
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NADINE VOGEL: your co-host joined by Norma Stanley.
NORMA STANLEY: Hello
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NORMA STANLEY: Everybody.
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NADINE VOGEL: Everybody. So you know, norm, Norma, you and I are like fricking track.
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NADINE VOGEL: We have a lot of fun.
NORMA STANLEY: Yeah.
NADINE VOGEL: But today for our listeners,
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NADINE VOGEL: you're gonna really enjoy this session. We are talking with Heather Ehle.
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NADINE VOGEL: Heather is the founder and chief executive officer of Project Sanctuary.
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NADINE VOGEL: So I know Heather that well, first of all, welcome, welcome to the show.
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HEATHER EHLE: Thank you guys for having me. I'm excited to be here.
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NADINE VOGEL: Yeah. And you know, you have this great background and you,
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NADINE VOGEL: you spent a lot of time in healthcare as a nurse, as a manager, as a volunteer.
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NADINE VOGEL: Um,
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NADINE VOGEL: but I wanna talk specifically today about Project Sanctuary.
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NADINE VOGEL: So let's start with just telling our listeners what is it?
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HEATHER EHLE: So Project Sanctuary is a place, it's an opportunity,
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HEATHER EHLE: it's a belief that all military families have the right and the ability to heal.
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HEATHER EHLE: Uh, serving our country is not easy.
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HEATHER EHLE: It's not easy for the service member, it's not easy for the veteran,
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HEATHER EHLE: and it's certainly not easy for the whole family.
NADINE VOGEL: Mm-hmm.
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HEATHER EHLE: So we created this nonprofit, um,
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HEATHER EHLE: to do six day therapeutic retreats with a full professional staff.
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HEATHER EHLE: We bring in counselors, mental health is, uh, at the forefront. Uh,
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HEATHER EHLE: certified recreation therapists, social workers,
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HEATHER EHLE: and for six days these families are given the opportunity to
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HEATHER EHLE: gain tools and experiences and practice some of their new tools, um,
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HEATHER EHLE: so that they can move forward better in life.
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NADINE VOGEL: Um, and when you have the retreat, is the active duty member back home then,
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NADINE VOGEL: and does this with the family, or are they still deployed? Correct.
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HEATHER EHLE: Correct. When either pre or post-deployment, so.
NADINE VOGEL: Got it.
HEATHER EHLE: So he's with,
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HEATHER EHLE: he or she is with the family.
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NADINE VOGEL: Got it. Okay. And geographically, where do you do these retreats?
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HEATHER EHLE: All over the country?
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HEATHER EHLE: So,
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HEATHER EHLE: We're from, uh, Seattle. We have two sites in Texas. Our home base is Colorado,
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HEATHER EHLE: um, Maryland, North Carolina, and two sites in Georgia.
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NADINE VOGEL: Very cool.
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HEATHER EHLE: Families, families come from anywhere in the whole country.
NADINE VOGEL:Yeah.
HEATHER EHLE: Uh,
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HEATHER EHLE: we've got families from Hawaii, Alaska, come, uh, Puerto Rico. Um,
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NADINE VOGEL: We'll, well, I, I know how, I know how important it is. My,
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NADINE VOGEL: my husband's a veteran and, um, we lived on post for many years,
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NADINE VOGEL: so I totally get it. Totally, totally get
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NADINE VOGEL: It.
HEATHER EHLE: Well, thank you also for your service and your sacrifices.
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NADINE VOGEL: You know, it's one of those things where if someone isn't in it,
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NADINE VOGEL: they don't get it. They really, they, they, they don't understand. And I,
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NADINE VOGEL: you know, I was so sad. I I I was shocked and then I was sad.
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NADINE VOGEL: And then I think I went back to shocked Right.
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NADINE VOGEL: To hear about the rates of child abuse and
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NADINE VOGEL: when a parent is deployed. Um, I w I was just like, oh my gosh.
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NADINE VOGEL: So a couple, and, and I mean, let me ask you this. Lemme take a step back.
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NADINE VOGEL: Because you have not been in the military,
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NADINE VOGEL: I don't think that you have any direct ties to military families.
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NADINE VOGEL: So tell us your why in terms of creating this, and,
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NADINE VOGEL: and let's just start with that.
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HEATHER EHLE: Okay. Uh, my father actually did serve in the Air Force, but he had,
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HEATHER EHLE: he had actually, uh, he was out,
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HEATHER EHLE: he served his three years and eight months and
NADINE VOGEL:mm-hmm.
HEATHER EHLE: Um, and so,
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HEATHER EHLE: but we didn't grow up in a typical military family
NADINE VOGEL: Okay.
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HEATHER EHLE: Other than me being able to count a 10 in Turkish. That's it.
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HEATHER EHLE: Um, but I was a registered nurse in Estes Park, Colorado,
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HEATHER EHLE: and we had a little tiny free clinic. And this was during the first Gulf War.
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HEATHER EHLE: And a military doctor, Dr.
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HEATHER EHLE: Chrislip began volunteering his time at this clinic and
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HEATHER EHLE: military family started showing up With Gulf War illness.
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HEATHER EHLE: And my first thought was, why are they not at the va?
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HEATHER EHLE: Why are they in my tiny clinic in Esther's Park?
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HEATHER EHLE: Why is nobody taking this seriously?
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HEATHER EHLE: I can look at the labs and see they're not healthy. Something is going on.
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NADINE VOGEL: Okay.
HEATHER EHLE: I mean, there was proof. Um, but they were coming from,
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HEATHER EHLE: they were driving from states away with their kids in the car
NADINE VOGEL: Wow.
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HEATHER EHLE: To get answers, to get, help, get anything, because we listened. Um,
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HEATHER EHLE: and we did our best we could to treat the symptoms, not knowing what it was,
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HEATHER EHLE: but it stuck with me, those whole family sitting in my waiting room looking for,
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HEATHER EHLE: uh, hope and just someone to listen.
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HEATHER EHLE: And so when you fast forward to 9-11 and all the numbers
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HEATHER EHLE: of people who signed up and started deploying, and I'm like, oh my gosh,
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HEATHER EHLE: we weren't prepared for Gulf War. How are we gonna help these families now?
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HEATHER EHLE: And I literally googled who's gonna help the family.
NADINE VOGEL: Oh my God.
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HEATHER EHLE: And nothing came up.
NADINE VOGEL: Nothing.
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HEATHER EHLE: Nothing. Ok.
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HEATHER EHLE: I'm like, oh my God. All these families, all these kiddos. And you're right.
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HEATHER EHLE: I read a statistic, and this was of course, way back, uh,
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HEATHER EHLE: during the beginning of the war. Um, but child abuse and neglect,
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HEATHER EHLE: triples and quadruples when a parent deploys,
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HEATHER EHLE: especially during the first part of the, the push, um,
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HEATHER EHLE: the global war on terror. There was a lot of stress.
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HEATHER EHLE: And these families went through it. Um,
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HEATHER EHLE: they would be deployed for 12 months and then to get extended to 15 and then get
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HEATHER EHLE: extended to 18 months. Um,
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HEATHER EHLE: typically the spouses back home hadn't been in this situation before.
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HEATHER EHLE: They were trying to work,
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HEATHER EHLE: they're now only parents and they're trying to take care of kids. It was,
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HEATHER EHLE: it was just a lot of, uh, trauma.
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NADINE VOGEL: Right, right. And, and have, have you noticed differences,
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NADINE VOGEL: um, in,
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NADINE VOGEL: in all of this relative to either in enlisted
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NADINE VOGEL: or officers relative to if the one being deployed is male or female,
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NADINE VOGEL: um, age, I mean, what are there, are there factors, characteristics,
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NADINE VOGEL: issues that you find have impact either negative or positive to this?
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HEATHER EHLE: We drop rank at the door. So it's the Smith family, it's the Jones family,
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HEATHER EHLE: it's this family. And then we,
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HEATHER EHLE: we try to cater our services per individual.
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NADINE VOGEL: Okay.
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HEATHER EHLE: Um, with that said, I think everybody has their own unique stress and trauma.
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NADINE VOGEL: Mm-hmm.
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HEATHER EHLE: Um,
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HEATHER EHLE: Bless them. Anybody working, um,
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HEATHER EHLE: as an officer or as, uh, I'm blanking the word right now,
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HEATHER EHLE: the chaplains, uh, holy cow.
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HEATHER EHLE: The chaplains absorb so much trauma.
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NADINE VOGEL: I bet.
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HEATHER EHLE: Um, so they're, they're absolutely. And then we have dual families.
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HEATHER EHLE: We're both mom and dad are serving.
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NADINE VOGEL: Right.
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NORAM STANLEY: Um, and what happens in that situation.
NADINE VOGEL: Yeah.
HEATHER EHLE: And they take turns deploying.
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HEATHER EHLE: Um, I'll never forget,
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HEATHER EHLE: we had one family that signed up for a retreat and they wrote on their
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HEATHER EHLE: application, just wanna hang out with other military families. And we're like,
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HEATHER EHLE: well, that's a little odd. Right. They came through the door and she was ready.
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HEATHER EHLE: Just, uh,
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HEATHER EHLE: she was not happy because she just got from back from a deployment,
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HEATHER EHLE: he was set to deploy and he was whining about it.
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HEATHER EHLE: She was not happy. And I'm like, counselor, we need a counselor Right. Over
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HEATHER EHLE: Here.
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HEATHER EHLE: They, they didn't even sit down their suitcases.
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NADINE VOGEL: Right. Right. And, and, but I, I'm wondering too, like,
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NADINE VOGEL: like when I think about age, you know, the younger families,
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NADINE VOGEL: so if you have a spouse deploy and you know, this family is, you know,
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NADINE VOGEL: early twenties, maybe his first child, they, you know,
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NADINE VOGEL: they're not even used to being married that long yet.
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NADINE VOGEL: I'm just wondering how that exacerbates some of this.
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HEATHER EHLE: Uh, and I, some of the younger families,
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HEATHER EHLE: they don't even know how to balance their finances. They don't have the,
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HEATHER EHLE: the life skills that you would think they're, they're so young.
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HEATHER EHLE: Um, what we've also seen is generation serve.
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HEATHER EHLE: So typically you've got the Vietnam veteran who came home and did not address
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HEATHER EHLE: his mental health issues or his disabilities and raised a family,
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HEATHER EHLE: and that family left,
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HEATHER EHLE: but get away from dad or the chaos in the family and they joined the
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HEATHER EHLE: military to, or they married somebody in the military to get,
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HEATHER EHLE: so we're watching generations,
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HEATHER EHLE: but these are the families that we're serving now that don't want to pass that
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HEATHER EHLE: along to their, their kids. And they, they're not,
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HEATHER EHLE: they're not okay with just being broken.
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HEATHER EHLE: They're looking for help and services and therapeutic outlets.
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HEATHER EHLE: They want to do better for their kids. So even the young ones, they're like,
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HEATHER EHLE: you know what, I came home with post-traumatic stress. I came home with a tbi.
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NADINE VOGEL: Mm-hmm.
HEATHER EHLE: Let's do something. Uh, I'm way too young. I'm in my twenties. Let's,
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HEATHER EHLE: I need a, I need better answers.
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NADINE VOGEL: And, and I think that's half the battle. Right.
NORMA STANLEY: It is.
NADINE VOGEL: someone recognizing,
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NADINE VOGEL: you know, that they need the help. Right. And, and then I'm just curious,
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NADINE VOGEL: how do they know about you? Um, who's talking about it, you know,
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NADINE VOGEL: whether inside or external to the military, but who's talking about it?
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NADINE VOGEL: How are they finding out?
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HEATHER EHLE: We are really a grassroots organization. Um,
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HEATHER EHLE: once a military family comes through and they recognize the,
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HEATHER EHLE: the unique qualities that we're able to offer and what we're able to do,
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HEATHER EHLE: they come back and they tell their friends, Hey, hey.
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HEATHER EHLE: We get spread around a lot in caregiver groups.
NADINE VOGEL: Mm-hmm.
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HEATHER EHLE: We also take care of veterans. Um,
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HEATHER EHLE: so caregiver groups on Facebook are a great way. Um,
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HEATHER EHLE: we do have some media attention. And then, um,
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HEATHER EHLE: the VA published a one paragraph blog about our
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HEATHER EHLE: program, one paragraph.
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HEATHER EHLE: And we had over 1100 applications in 48 hours.
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NORMA STANLEY: Wow.
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NADINE VOGEL: Wow.
HEATHER EHLE: Because not everyone, wonderful organizations take care of the veteran.
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HEATHER EHLE: Not a lot of us take care of the whole family.
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HEATHER EHLE: I would say that we are the authority. No one's doing 20 to 30 retreats a year.
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HEATHER EHLE: Nobody has the family support follow up services that we do so that they have
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HEATHER EHLE: individual case management. We just don't do a retreat and say, well,
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HEATHER EHLE: that was good, pat ourselves on the back.
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HEATHER EHLE: We stay with these families for as long as they need us.
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NADINE VOGEL: Which is, which is really important. It's
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NORMA STANLEY: Absolutely positively amazing. Wow. I
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NORMA STANLEY: I'm just in awe.
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NORMA STANLEY: I didn't know that you existed and I know so many people who could use your
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NORMA STANLEY: help. My sister is,
NORMA STANLEY: yeah, go ahead.
NORMA STANLEY: I'm saying she, she's um,
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NORMA STANLEY: she retired from the military. She's a, you know, she's a, she,
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NORMA STANLEY: she was a lieutenant colonel, whatever. And, um, you know,
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NORMA STANLEY: she's joined when she was 37. She left Oh wow. 30 something years later. Um,
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NORMA STANLEY: but, you know, I don't know what she saw in her own experience.
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NORMA STANLEY: And she only been retired about three or four years,
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NORMA STANLEY: but I think she may have some PTs d from that whole experience.
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NORMA STANLEY: And she's married and her husband's also former military. And they, you know,
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NORMA STANLEY: they don't have children together, but they, you know, he has child, uh,
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NORMA STANLEY: grown people now. But the point is that I don't know if these people,
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NORMA STANLEY: like you say, recognize like,
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NORMA STANLEY: like the young person recognized that they had something that they needed to
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NORMA STANLEY: address before it got to, to a point where they couldn't handle it. Um,
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NORMA STANLEY: you know, as I talked to my sister in some of the conversations,
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NORMA STANLEY: it's like she's changed. And I don't know if it's because of the,
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NORMA STANLEY: when she first joined the military, she was raped.
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HEATHER EHLE: Yeah.
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NORMA STANLEY: And that's something that I'm sure is in her subconscious somewhere that's
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NORMA STANLEY: manifesting in different ways that I don't know if she's ever really addressed.
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NADINE VOGEL: Right.
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HEATHER EHLE: And that is a huge issue that is not spoken about a lot
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HEATHER EHLE: in the media. No one wants to address it.
NORMA STANLEY: Exactly.
HEATHER EHLE: But military sexual trauma,
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HEATHER EHLE: and we call it M-S-T, is prevalent.
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HEATHER EHLE: It is extremely. And it's not just the females that are being raped.
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HEATHER EHLE: Men also are raped. And that is absolutely not talked about,
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HEATHER EHLE: but you're absolutely right.
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HEATHER EHLE: Sometimes they don't even know they have post-traumatic stress.
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HEATHER EHLE: They don't know they have a traumatic brain injury.
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HEATHER EHLE: They come to one of our retreats and we're like,
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HEATHER EHLE: so what are you doing for your T-B-I? And they go, wow, I don't have a T-B-I.
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HEATHER EHLE: And we're like, oh, maybe we
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NADINE VOGEL: Right, let's,
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HEATHER EHLE: Let's hook you up with some services. Let's get you properly diagnosed.
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HEATHER EHLE: Or even they're sitting around, we have a, um, post-traumatic growth class,
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HEATHER EHLE: uh, how to live with post-traumatic stress as a family.
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HEATHER EHLE: And a caregiver or a spouse is sitting there going, holy cow,
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HEATHER EHLE: I've got post-traumatic stress.
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HEATHER EHLE: I didn't recognize that this book that happened in my childhood is now
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HEATHER EHLE: transferred into my adulthood. And I have not treated or even acknowledged it.
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HEATHER EHLE: I didn't even think for a moment that I might have post-traumatic stress. Um.
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NADINE VOGEL: Right.
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NORMA STANLEY: She's also a nurse, so, and you're saying in Texas, I may have to refer you.
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HEATHER EHLE: You just sent her my email.
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NORMA STANLEY: Ok.
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NADINE VOGEL: Well, and you know, and the thing is, is that, you know, so, you know, with,
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NADINE VOGEL: with disability, I mean this is Right. Disabled lives matter. Right. You know,
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NADINE VOGEL: I wanna be clear for our listeners, when we talk about post-traumatic stress,
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NADINE VOGEL: we're talking about traumatic brain injury. These,
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NADINE VOGEL: these are forms of disability.
HEATHER EHLE: Yes. Yes.
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NADINE VOGEL: Many times invisible until they're not. Mm-hmm. But I imagine,
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NADINE VOGEL: um, Heather, that you also see, you know,
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NADINE VOGEL: folks coming back from deployments with visible disabilities.
HEATHER EHLE: Yes.
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NADINE VOGEL: Loss of an arm, loss of a, you know, something very visible. And I,
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NADINE VOGEL: I, you know, it's, I I think that we see folks that are in denial, right?
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HEATHER EHLE: Mm-hmm.
NADINE VOGEL: Even with that, um,
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NADINE VOGEL: and so my next question to you is, you know,
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NADINE VOGEL: we talked about that the folks that are coming to you, the families,
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NADINE VOGEL: they get it and they, they're coming to you cuz they know they need the help.
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NADINE VOGEL: They recognize it. What about the ones that are in such a state of denial, not,
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NADINE VOGEL: not just about maybe their own disability,
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NADINE VOGEL: but about that there is child abuse and neglect and things going on as a result.
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NADINE VOGEL: Like,
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NADINE VOGEL: how do we find out about those families and have them find out more about you
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NADINE VOGEL: and, and some, how do we get them in if they don't identify with that yet?
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HEATHER EHLE: We had a, um, so they're, they get drugged there. They get tricked. They get,
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NADINE VOGEL: I love it.
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HEATHER EHLE: We had a female veteran that her story will stay with me forever.
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HEATHER EHLE: And it was just horrific trauma, horrific trauma. Um,
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HEATHER EHLE: and she was in denial and coping the best she could.
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HEATHER EHLE: And her husband point blank said, we're going on a vacation in Colorado.
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HEATHER EHLE: Did not tell her what was going on. That is not the way we like to do things.
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NADINE VOGEL: Right. Right.
HEATHER EHLE: We like everybody to buy in. Right. Um, but in this one instance,
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HEATHER EHLE: it did work. Uh, it was almost like an intervention. Um,
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HEATHER EHLE: we all sat around and lovingly accepted her for who she was
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HEATHER EHLE: and accepted her trauma and normalized her trauma, uh,
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HEATHER EHLE: and gave her paths forward. And she's just doing beautifully now.
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NADINE VOGEL: Good.
HEATHER EHLE: Um, but they,
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HEATHER EHLE: a lot of times even they'll recognize some of the posttraumatic stress in
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HEATHER EHLE: their children.
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NADINE VOGEL:Yes.
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HEATHER EHLE: And they'll see the avoidance, they'll see the anger,
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HEATHER EHLE: they'll see the withdrawal,
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HEATHER EHLE: they'll see some things that don't sit well with them,
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HEATHER EHLE: and they will sign up because again, they want to do better.
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NADINE VOGEL: So Norma and I are having a fabulous conversation with Heather Ely from
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NADINE VOGEL: Project Sanctuary. Heather, we were talk, just started talking about,
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NADINE VOGEL: you know, when the child is experiencing post-traumatic stress,
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NADINE VOGEL: which is obviously can happen,
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NADINE VOGEL: but I'm curious if you see changes or differences in the
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NADINE VOGEL: abuse, the neglect when the child has a disability.
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NADINE VOGEL: So child has cerebral palsy, child has Down syndrome, something like that.
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NADINE VOGEL: You know, we know without any stress of a deployment,
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NADINE VOGEL: the divorce rate in the special needs parent population is upwards of like 80%.
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NADINE VOGEL: So we know there's a lot of stress. So I'm curious how that impacts this.
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NADINE VOGEL: When we add the military deployment to it,
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HEATHER EHLE: It magnifies the chaos, it magnifies the stress.
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HEATHER EHLE: Um, you're absolutely right.
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HEATHER EHLE: People don't stop and realize that military families actually are real families
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HEATHER EHLE: with real issues aside from the military. They may have a child on the spectrum.
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NADINE VOGEL: Right.
HEATHER EHLE: Uh, a lot of times, because the divorce rate is so high in the military,
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HEATHER EHLE: you have his, hers and ours.
NADINE VOGEL: Yeah.
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HEATHER EHLE: So it is not uncommon within our retreats to have a family with six or eight
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HEATHER EHLE: children.
NADINE VOGEL: Right.
HEATHER EHLE: Uh, and if you have six to eight children,
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HEATHER EHLE: there's a good chance that one or two children may have a
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HEATHER EHLE: disability.
NADINE VOGEL: Right.
HEATHER EHLE: Um,
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HEATHER EHLE: and we've actually sat down once again with parents and said,
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HEATHER EHLE: so when was your child diagnosed with, so, and they're like, what?
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HEATHER EHLE: Okay. If your child can get,
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HEATHER EHLE: We have a unique opportunity during our retreat. So we,
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HEATHER EHLE: we have two hours worth of classroom time each day.
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HEATHER EHLE: So the first two days are focused on relationship and communication.
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HEATHER EHLE: And so what we're teaching the adults,
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HEATHER EHLE: we also teach the teenagers and the children.
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HEATHER EHLE: So the whole family's getting the same skillsets.
NADINE VOGEL: Okay.
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HEATHER EHLE: And a lot of times when we're working with these kids,
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HEATHER EHLE: we really get to know them.
NADINE VOGEL: Right.
HEATHER EHLE: Um,
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HEATHER EHLE: and we can see some maybe that,
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HEATHER EHLE: that the child might be on the spectrum or we can pick up on, because we're,
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HEATHER EHLE: we are trained professionals, um, right.
301
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HEATHER EHLE: With the certified rec therapist and the counselors and everyone.
NADINE VOGEL: Right.
HEATHER EHLE: Um,
302
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HEATHER EHLE: but yeah, it's an added stress. It, it absolutely compounds,
303
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HEATHER EHLE: um, what these families so selfishlessly do
NADINE VOGEL: Right.
304
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HEATHER EHLE: By our country.
NADINE VOGEL: Right.
HEATHER EHLE: And balancing their home life.
305
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NADINE VOGEL: Well, you know, it's interesting, and, and this goes back now over 30 years ago,
306
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NADINE VOGEL: so I, I am going to say I'm really hopeful things have changed over time.
307
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NADINE VOGEL: But when my first daughter was born, she was born with a significant,
308
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NADINE VOGEL: significantly disabled. And my husband had just gotten outta the military.
309
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NADINE VOGEL: And I remember having this conversation because she was in NICU for months and
310
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NADINE VOGEL: all the services. And we had this conversation about, oh my gosh,
311
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NADINE VOGEL: if you were still on active duty, how would we deal with this?
312
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NADINE VOGEL: How would we get these services, these therapy, like all of this stuff. And so,
313
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NADINE VOGEL: you know, thinking about a deployment where you have one parent,
314
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NADINE VOGEL: like you said earlier, you know, working,
315
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NADINE VOGEL: maybe taking care of different numbers of children,
316
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NADINE VOGEL: but the child needs therapies, the child,
317
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NADINE VOGEL: they have to go to an I-E-P in the school or what, whatever it is.
318
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NADINE VOGEL: So I'm imagining that as part of your services,
319
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NADINE VOGEL: you're kind of a,
320
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NADINE VOGEL: a special needs parent support group as well in many ways.
321
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HEATHER EHLE: Absolutely. And not only, and then once they,
322
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HEATHER EHLE: they create the services their child needs and they find the right doctors and
323
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HEATHER EHLE: therapies, the military moves them Yes. Every three years.
324
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NADINE VOGEL: Yes.
325
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HEATHER EHLE: And so these kids are growing up also without a stable home base.
326
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NADINE VOGEL: Right.
327
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HEATHER EHLE: Uh, they're not growing up with grandma and grandpa,
328
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HEATHER EHLE: grandma and grandpa could be a whole few states away.
NADINE VOGEL: Right.
HEATHER EHLE: Um,
329
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HEATHER EHLE: and so it it does, it makes it way more difficult.
330
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HEATHER EHLE: And I feel like I'm the link in between the military and the civilian world,
331
00:20:00.170 --> 00:20:02.470
HEATHER EHLE: and I'm like, Hey guys, uh,
332
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HEATHER EHLE: these military families are sacrificing so much. So I,
333
00:20:06.390 --> 00:20:08.990
HEATHER EHLE: I usually don't thank our families for just their service.
334
00:20:09.230 --> 00:20:10.910
HEATHER EHLE: I thank them for their sacrifices.
335
00:20:11.090 --> 00:20:15.950
NADINE VOGEL: Yes, absolutely. Ab absolutely. Well, and the other thing is, if, if they're,
336
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NADINE VOGEL: if let's say they don't have military doctors or therapists or specialists to
337
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NADINE VOGEL: work with the kids, let's say.
HEATHER EHLE: Mm-hmm.
NADINE VOGEL: Um, and so then they're champesing out.
338
00:20:23.000 --> 00:20:27.630
NADINE VOGEL: Right. And getting, you know, private sector, non non-military, um,
339
00:20:28.180 --> 00:20:32.610
NADINE VOGEL: doctors, those doctors have no understanding. Then they,
340
00:20:32.610 --> 00:20:35.330
NADINE VOGEL: they can treat the issue, the medical issue,
341
00:20:35.590 --> 00:20:38.850
NADINE VOGEL: but then they do not have any of the understanding that you and Project
342
00:20:39.290 --> 00:20:43.170
NADINE VOGEL: Sanctuary has relative to what may be behind some of this or what may be
343
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NADINE VOGEL: exacerbating some of this.
344
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HEATHER EHLE: Right. Absolutely. And I think that, uh, throughout my nursing career,
345
00:20:50.480 --> 00:20:51.080
HEATHER EHLE: um,
346
00:20:51.080 --> 00:20:55.060
HEATHER EHLE: my favorite was Home Care and Hospice because I was invited into their homes.
347
00:20:55.310 --> 00:20:58.620
NADINE VOGEL: Right.
HEATHER EHLE: And the doctors would say, Hey, we don't understand what's going in.
348
00:20:58.620 --> 00:21:02.820
HEATHER EHLE: But once you get to know the families, once you create that level of, uh,
349
00:21:03.050 --> 00:21:07.900
HEATHER EHLE: respect and trust, which is what we do over six days.
NADINE VOGEL: Yes.
HEATHER EHLE: Um,
350
00:21:08.330 --> 00:21:11.500
HEATHER EHLE: then they, they're able to open up and trust. And, um,
351
00:21:11.730 --> 00:21:15.460
HEATHER EHLE: when and when we offer referrals or say, Hey, let's try this, or Hey,
352
00:21:15.600 --> 00:21:19.110
HEATHER EHLE: you know what, we're in this with you. We don't have all the answers,
353
00:21:19.170 --> 00:21:22.390
HEATHER EHLE: but we're gonna walk alongside you and we're gonna help and we're gonna point
354
00:21:22.390 --> 00:21:25.110
HEATHER EHLE: you in the right direction. But, you know, after a retreat,
355
00:21:25.110 --> 00:21:28.830
HEATHER EHLE: they understand and they know us, and they're like, yes, thank you. We're not,
356
00:21:28.840 --> 00:21:30.550
HEATHER EHLE: we're not completely alone anymore.
357
00:21:31.070 --> 00:21:31.450
NADINE VOGEL: Absolutely.
358
00:21:31.450 --> 00:21:33.510
HEATHER EHLE: And we've got someone who can, uh,
359
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HEATHER EHLE: help navigate the confusing world of resources.
360
00:21:37.440 --> 00:21:39.070
NADINE VOGEL: Right. Well, you know what's interesting, I,
361
00:21:39.150 --> 00:21:43.670
NADINE VOGEL: I was having a conversation with someone last week and I mentioned that you were
362
00:21:43.670 --> 00:21:47.910
NADINE VOGEL: gonna be on
HEATHER EHLE: mm-hmm.
NADINE VOGEL: And they're married to someone in the military. Um,
363
00:21:47.990 --> 00:21:51.110
NADINE VOGEL: I mentioned we were talking about it and she had not heard of it, so I was like,
364
00:21:51.110 --> 00:21:54.710
NADINE VOGEL: already giving all the information, but here was this,
365
00:21:55.490 --> 00:21:59.580
NADINE VOGEL: the question she asked was also a little scary to me. And she said,
366
00:21:59.600 --> 00:22:01.700
NADINE VOGEL: and I I actually wrote it down. She said,
367
00:22:02.400 --> 00:22:06.940
NADINE VOGEL: so when Project Sanctuary talks about child abuse and neglect,
368
00:22:07.520 --> 00:22:12.370
NADINE VOGEL: how do they define that? Right. And I thought,
369
00:22:13.550 --> 00:22:16.870
NADINE VOGEL: I wasn't sure how to even, well, one, I didn't know how to respond specifically.
370
00:22:16.870 --> 00:22:18.070
NADINE VOGEL: I didn't wanna speak on your behalf,
371
00:22:18.170 --> 00:22:22.230
NADINE VOGEL: but the other piece of me was a little scared about why they were,
372
00:22:22.250 --> 00:22:25.710
NADINE VOGEL: she was asking, um, what was behind it, I guess.
373
00:22:26.290 --> 00:22:29.430
NADINE VOGEL: So can you answer that? I'm sure she's listening. And so,
374
00:22:30.070 --> 00:22:30.903
HEATHER EHLE: Yeah.
375
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HEATHER EHLE: Um,
376
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HEATHER EHLE: So number one, we,
377
00:22:32.550 --> 00:22:36.470
HEATHER EHLE: we are mandatory reporters because we are a professional organization. Um,
378
00:22:37.890 --> 00:22:42.670
HEATHER EHLE: but our whole focus is moving the families into a healthier stream.
379
00:22:42.970 --> 00:22:47.550
HEATHER EHLE: So we, we do address it if it is obvious and evident. And, um,
380
00:22:48.260 --> 00:22:50.730
HEATHER EHLE: thankfully it's not every single retreat,
381
00:22:50.750 --> 00:22:54.490
HEATHER EHLE: and it's certainly not every single family. So it is the rare exception and the,
382
00:22:55.030 --> 00:22:57.990
HEATHER EHLE: um, the rare case.
383
00:22:58.610 --> 00:23:02.510
HEATHER EHLE: And then we make sure these families are empowered to move forward and make
384
00:23:02.510 --> 00:23:04.950
HEATHER EHLE: better choices, and they have the resources they need.
385
00:23:05.490 --> 00:23:06.790
HEATHER EHLE: So if we do see something,
386
00:23:06.790 --> 00:23:11.030
HEATHER EHLE: whether it's domestic abuse or child abuse or neglect, um, we,
387
00:23:11.130 --> 00:23:12.830
HEATHER EHLE: we confront it head on. Um,
388
00:23:12.900 --> 00:23:16.790
HEATHER EHLE: that family is gonna bond with one of our counselors or one of our peer mentors
389
00:23:17.050 --> 00:23:21.150
HEATHER EHLE: or one of our therapists, they're gonna bond with somebody in that group.
390
00:23:22.170 --> 00:23:23.190
HEATHER EHLE: And again,
391
00:23:23.190 --> 00:23:28.190
HEATHER EHLE: it's that trust in that relationship and being able to move that family
392
00:23:28.190 --> 00:23:30.470
HEATHER EHLE: forward with better ideas.
393
00:23:31.050 --> 00:23:32.510
NADINE VOGEL: No, that, that's, that's great.
394
00:23:33.610 --> 00:23:38.260
NADINE VOGEL: So does it cost to participate in the retreats? How,
395
00:23:38.280 --> 00:23:43.020
NADINE VOGEL: how do families cover that if there is, or you, how are you funded?
HEATHER EHLE: Mm-hmm.
396
00:23:43.680 --> 00:23:48.440
HEATHER EHLE: So we, we feel like the families have already paid.
NADINE VOGEL: Yes,
397
00:23:48.580 --> 00:23:51.240
HEATHER EHLE: we do. We do ask for a hundred dollars commitment fee,
398
00:23:51.370 --> 00:23:55.200
HEATHER EHLE: which is returned to them at the retreat, just to hold their spot. Um,
399
00:23:56.060 --> 00:24:00.040
HEATHER EHLE: if they can get themselves to a retreat, awesome. We can usually get them in,
400
00:24:00.540 --> 00:24:04.400
HEATHER EHLE: uh, pretty quickly. If we need to help with transportation,
401
00:24:04.460 --> 00:24:08.320
HEATHER EHLE: we found a family will drive pretty much from Florida to Colorado for about
402
00:24:08.320 --> 00:24:11.920
HEATHER EHLE: $250. They just need a little extra help.
NADINE VOGEL: Right.
403
00:24:12.020 --> 00:24:13.240
HEATHER EHLE: I'm not sure if you guys have noticed,
404
00:24:13.380 --> 00:24:17.640
HEATHER EHLE: but the economy's a little wonky right now.
NADINE VOGEL: Yeah.
HEATHER EHLE: So
405
00:24:20.130 --> 00:24:23.920
HEATHER EHLE: we're, we're doing what we can to get these families the help they need, uh,
406
00:24:23.940 --> 00:24:28.080
HEATHER EHLE: to the closest retreat. Uh, obviously if you're in Florida,
407
00:24:28.520 --> 00:24:31.400
HEATHER EHLE: probably one of the Georgia retreats is more reasonable.
NADINE VOGEL: Right,
408
00:24:31.490 --> 00:24:32.060
NADINE VOGEL: Right.
409
00:24:32.060 --> 00:24:32.290
HEATHER EHLE: Um,
410
00:24:32.290 --> 00:24:36.120
HEATHER EHLE: which is why we're spread out to make ourselves accessible because people are
411
00:24:36.190 --> 00:24:38.960
HEATHER EHLE: traveling with disabilities.
NADINE VOGEL: Mm-hmm.
HEATHER EHLE: Uh,
412
00:24:39.000 --> 00:24:41.440
HEATHER EHLE: a lot of our families won't get on a plane. Uh,
413
00:24:41.440 --> 00:24:45.120
HEATHER EHLE: they choose to drive because that's safer for them, and they have a way out,
414
00:24:46.670 --> 00:24:50.010
HEATHER EHLE: um, and they have more control. Um, but yeah,
415
00:24:50.030 --> 00:24:51.970
HEATHER EHLE: if they can get themselves to a retreat, awesome.
416
00:24:51.970 --> 00:24:54.690
HEATHER EHLE: We're gonna get 'em in pretty quickly. If we need to help, we will,
417
00:24:54.750 --> 00:24:56.970
HEATHER EHLE: we will do what we can. We're, uh,
418
00:24:56.970 --> 00:25:00.050
HEATHER EHLE: really not government funded for our programs. Uh,
419
00:25:00.050 --> 00:25:03.690
HEATHER EHLE: we're working with the C-D-C on suicides and suicide prevention,
420
00:25:04.140 --> 00:25:07.450
HEATHER EHLE: which is pretty nice. But we rely on the kindness of others.
421
00:25:07.670 --> 00:25:11.290
HEATHER EHLE: We rely on others to do fundraisers for us.
NADINE VOGEL: Mm-hmm.
422
00:25:12.070 --> 00:25:17.050
HEATHER EHLE: We rely on foundations, um, donations just spreading the word. And,
423
00:25:17.750 --> 00:25:21.330
HEATHER EHLE: um, we, we feel like we've got a really unique model that works,
424
00:25:21.830 --> 00:25:23.410
HEATHER EHLE: and we've been doing this for 15 years.
425
00:25:23.500 --> 00:25:27.570
HEATHER EHLE: We've got our metrics now we've got our impacts. We, we know what we're doing.
426
00:25:27.870 --> 00:25:30.730
HEATHER EHLE: Uh, we can, we've got the numbers, we can prove that it works.
427
00:25:31.140 --> 00:25:31.973
NADINE VOGEL: Right. Um,
428
00:25:32.270 --> 00:25:33.103
HEATHER EHLE: And
429
00:25:33.400 --> 00:25:35.090
NADINE VOGEL: Half the battle in getting funds, sometimes
430
00:25:35.510 --> 00:25:39.250
HEATHER EHLE: It, it is, uh, we beg a lot for money. Um,
431
00:25:39.350 --> 00:25:42.010
HEATHER EHLE: that's why I feel like my job is a professional beggar.
432
00:25:43.640 --> 00:25:45.970
NADINE VOGEL: Well, hopefully once people hear about this from the podcast,
433
00:25:46.550 --> 00:25:50.210
NADINE VOGEL: you can do a little less of that. Right. We can only hope. Now you serve all,
434
00:25:50.210 --> 00:25:51.890
NADINE VOGEL: all arm services, is that correct?
435
00:25:52.040 --> 00:25:56.930
HEATHER EHLE: Correct. Probably one of the most severe TBIs I've ever seen was Coast Guard,
436
00:25:57.710 --> 00:26:02.530
HEATHER EHLE: and he had fallen down metal stairs and hit his head.
NADINE VOGEL: Oh.
HEATHER EHLE: Um,
437
00:26:02.680 --> 00:26:06.210
HEATHER EHLE: yeah. And that's, that's another thing to point out. Uh, sometimes it's not mom,
438
00:26:06.210 --> 00:26:09.650
HEATHER EHLE: dad, and two kids sometimes. In this case, uh,
439
00:26:09.830 --> 00:26:14.610
HEATHER EHLE: he was a veteran and he came with his parents who were his full-time caregivers
440
00:26:14.610 --> 00:26:17.250
HEATHER EHLE: and did not understand what a traumatic brain injury was,
441
00:26:17.250 --> 00:26:20.250
HEATHER EHLE: and did not understand that they needed to take time for themselves.
442
00:26:20.820 --> 00:26:21.653
NADINE VOGEL: Right.
443
00:26:21.920 --> 00:26:24.170
HEATHER EHLE: Also. And so that they could better take care of him.
444
00:26:24.880 --> 00:26:27.970
NADINE VOGEL: Yeah. So how do we get in touch with you?
445
00:26:27.970 --> 00:26:31.770
NADINE VOGEL: How do our listeners who wanna give you money or,
446
00:26:31.910 --> 00:26:36.770
HEATHER EHLE: or come volunteer
NADINE VOGEL: or volunteer or they're in need of a service?
447
00:26:36.820 --> 00:26:38.770
NADINE VOGEL: Right. How do they get in touch with you?
448
00:26:39.240 --> 00:26:43.950
HEATHER EHLE: It's ProjectSanctuary.Us
NADINE VOGEL: and how yours
HEATHER EHLE: Project
449
00:26:44.310 --> 00:26:45.430
HEATHER EHLE: Sanctuary.us.
450
00:26:45.850 --> 00:26:50.150
HEATHER EHLE: And there's a register on the very top of the website.
451
00:26:50.220 --> 00:26:54.390
HEATHER EHLE: There's a Contact Us button. We're on all social media, we're on Facebook,
452
00:26:54.390 --> 00:26:58.870
HEATHER EHLE: Twitter, LinkedIn, Instagram. People love our Instagram and our pictures, uh,
453
00:26:58.870 --> 00:27:00.150
HEATHER EHLE: especially of the retreats.
454
00:27:00.740 --> 00:27:01.420
NADINE VOGEL: Okay,
455
00:27:01.420 --> 00:27:05.110
NADINE VOGEL: Good.
HEATHER EHLE: And we're pretty responsive. I think we're open 24 7.
456
00:27:06.060 --> 00:27:10.960
NADINE VOGEL: It sounds like it. And more.
HEATHER EHLE: Yeah.
NADINE VOGEL: If that's possible. Um, so if,
457
00:27:11.100 --> 00:27:15.300
NADINE VOGEL: if you were looking into the future
HEATHER EHLE: mm-hmm.
NADINE VOGEL: What, you know, if I said,
458
00:27:16.060 --> 00:27:20.700
NADINE VOGEL: describe Project Sanctuary to me in the year, you know, 2030
HEATHER EHLE: mm-hmm.
NADINE VOGEL: Right.
459
00:27:20.700 --> 00:27:23.820
NADINE VOGEL: Which I can't even believe actually isn't even that far off. Um,
460
00:27:23.850 --> 00:27:25.660
NADINE VOGEL: what would that look like? What would that sound like?
461
00:27:27.030 --> 00:27:29.340
HEATHER EHLE: We're right now, uh,
462
00:27:30.770 --> 00:27:32.910
HEATHER EHLE: trying to build out,
463
00:27:34.110 --> 00:27:38.350
HEATHER EHLE: I think the first therapeutic center built just for military families.
464
00:27:39.350 --> 00:27:44.150
HEATHER EHLE: I would love for military families always to have an actual place to go.
465
00:27:44.570 --> 00:27:46.910
NADINE VOGEL: Mm-hmm.
HEATHER EHLE: That's physical. Uh,
466
00:27:46.980 --> 00:27:51.900
HEATHER EHLE: that they know that because we are seeing generations serve,
467
00:27:52.360 --> 00:27:56.660
HEATHER EHLE: our kids have grown up and they're now serving my kids from the youth group.
468
00:27:57.190 --> 00:27:58.700
NADINE VOGEL: Right.
HEATHER EHLE: Are now deploying.
469
00:27:59.150 --> 00:27:59.983
NADINE VOGEL: Right.
470
00:28:00.160 --> 00:28:03.620
HEATHER EHLE: So it is generational transformations. Um,
471
00:28:03.740 --> 00:28:08.540
HEATHER EHLE: I hope we're always going to be able to be there for the families because
472
00:28:08.540 --> 00:28:09.580
HEATHER EHLE: it's not gonna stop.
473
00:28:10.070 --> 00:28:14.620
HEATHER EHLE: We're always gonna have skirmishes and deployments and stuff going on
474
00:28:14.850 --> 00:28:19.540
HEATHER EHLE: that probably the public doesn't need to know. Um, but we're,
475
00:28:20.040 --> 00:28:23.380
HEATHER EHLE: we should be really proud and thankful of our military and the service.
476
00:28:23.520 --> 00:28:26.780
HEATHER EHLE: And I hope Project Sanctuary is around, at least for another a hundred years,
477
00:28:27.350 --> 00:28:29.980
HEATHER EHLE: continuing to empower these families for generations.
478
00:28:30.910 --> 00:28:34.770
NADINE VOGEL: Sounds good to me. Thank you, Heather. Thank you so much.
479
00:28:35.000 --> 00:28:39.970
NADINE VOGEL: This was wonderful. And I, I just, I know personally, it's,
480
00:28:40.000 --> 00:28:43.530
NADINE VOGEL: it's going to help folks. Norma, anything you wanna add to this?
NORMA STANLEY: Well,
481
00:28:43.530 --> 00:28:47.010
NORMA STANLEY: I just, kudos and I'm so glad to know that you, that you exist. I had no idea,
482
00:28:47.010 --> 00:28:49.050
NORMA STANLEY: but I know a lot of people who could use your services,
483
00:28:49.270 --> 00:28:51.170
NORMA STANLEY: so I'll be sharing the information.
484
00:28:52.570 --> 00:28:54.410
NADINE VOGEL: Absolutely. And so to our listeners,
485
00:28:54.540 --> 00:28:59.130
NADINE VOGEL: thank you once again for joining us on Disabled Lives Matter more than a
486
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NADINE VOGEL: podcast. We're a movement inclusive of military families,
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NADINE VOGEL: active duty, who are deployed, who are not deployed veterans, all of it.
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NADINE VOGEL: Right? We are. Everybody we serve.
HEATHER EHLE: Yeah.
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NADINE VOGEL: So we will see you on another episode. This is Nadine Vogel,
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NADINE VOGEL: joined by Norma Stanley. And, uh, we'll see you next time. And Heather,
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NADINE VOGEL: thank you for everything you guys do.
NORMA STANLEY: Absolutely.
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HEATHER EHLE: Thank you. Thank you so much for, for giving us a voice and having us on.
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HEATHER EHLE: Thank you.
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NADINE VOGEL: Absolutely. Bye-bye everybody. Bye.
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NORMA STANLEY: Bye Be Blessed List.
CLOSING COMMENT [Music playing in background.]
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VOICEOVER: Thank you for listening to this week's episode of Disabled Lives Matter.
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VOICEOVER: We look forward to seeing you next Thursday. Have a great week.
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VOICEOVER: connection with any other website, computer, and or listening device.
Thursday Jun 15, 2023
Thursday Jun 15, 2023
Season 03, Episode 05
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Wayne Connell
INTRO [Music playing in background]
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VOICEOVER: Disabled Lives Matter. Here we go.
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VOICEOVER: Hello,
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VOICEOVER: and welcome to this week's episode of the Disabled Lives Matter podcast.
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VOICEOVER: Let's welcome co-hosts Nadine Vogel and Norma Stanley.
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NADINE VOGEL: Hello and welcome everyone,
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NADINE VOGEL: to another fabulous episode of Disabled Lives Matter.
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NADINE VOGEL: We are more than a podcast. We are a movement. This is Nadine Vogel,
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NADINE VOGEL: one of your hosts, and I am joined by my fabulous co-host, Norma Stanley.
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NORMA STANLEY: Hello everybody.
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NADINE VOGEL: And Norma, you just got back from a wonderful vacation, didn't you?
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NORMA STANLEY: Yes, I was in Tanzania, Africa, and it was amazing.
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NORMA STANLEY: I'm so thankful that I had a chance to go,
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NORMA STANLEY: but I'm so excited to be back and back on Disabled Lives Matter.
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NADINE VOGEL: Absolutely. So we are joined today, should I say,
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NADINE VOGEL: by the infamous Wayne Connell. Um,
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NADINE VOGEL: he is, uh, with Invisible Disabilities Association. He is not only with them,
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NADINE VOGEL: he is the president and C-E-O and founder.
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NADINE VOGEL: The organization's been around since 1996, so Wayne, welcome.
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WAYNE CONNELL: Oh, well thank you so much, Nadine. I appreciate it.
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NADINE VOGEL: Yeah. So tell us, well,
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NADINE VOGEL: first tell us what is I-D-A and then let's talk about why you founded
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NADINE VOGEL: it.
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WAYNE CONNELL: So, uh, invisible Disabilities Association is a 5 0 1 C three nonprofit. Um,
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WAYNE CONNELL: uh,
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WAYNE CONNELL: founded in 1996 and incorporated as a a a
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WAYNE CONNELL: non, an actual 5 0 1 C three in 2004. Um,
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WAYNE CONNELL: and what we do is we are an awareness education organization, um,
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WAYNE CONNELL: helping people understand invisible disabilities.
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NADINE VOGEL: Okay, great. And, and that's really important.
NORMA STANLEY: Um, very much so.
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NADINE VOGEL: One of the things, I'm just gonna start right outta the gate with,
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NADINE VOGEL: cuz there's always controversial stuff when it comes to disability, right?
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NADINE VOGEL: Is this issue of some people refer to an invisible disability as a hidden
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NADINE VOGEL: disability. And I, I dunno, I, I have a,
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NADINE VOGEL: it doesn't feel right to me for some reason. Right? It just like,
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NADINE VOGEL: like someone's intentionally hiding it.
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NADINE VOGEL: So I'm just wondering if you have any perspective or any thoughts on that.
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WAYNE CONNELL: Well, so how about if I, you know, you mentioned, you know,
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WAYNE CONNELL: why did I start the organization?
NADINE VOGEL: Yeah.
WAYNE CONNELL: Cause I'll kinda tell you about that.
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WAYNE CONNELL: So, really, uh, the, the story is, is that my,
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WAYNE CONNELL: I met my wife and my wife when I met her year before, uh, 1991,
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WAYNE CONNELL: had been diagnosed with primary progressive multiple sclerosis.
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WAYNE CONNELL: And what that really is, is MS with no good days. Right? That's, uh, um,
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WAYNE CONNELL: you know, and so we met, um, I was, you know,
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WAYNE CONNELL: sh why wouldn't I want to marry this gal. She was amazing and funny and all these
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WAYNE CONNELL: other things I didn't even think about disability, had no, you know,
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WAYNE CONNELL: didn't think about it all. She was unable to work,
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WAYNE CONNELL: had a couple college degrees and in the prime of her life at 27, you know, uh,
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WAYNE CONNELL: been struck down by this illness. So, um, when we met,
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WAYNE CONNELL: she was also diagnosed with Lyme disease from a tick bite. And, um,
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WAYNE CONNELL: we can trace that back to when she was 14. Um, and she had been sick on and off,
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WAYNE CONNELL: but doing musical theater and acting and all this crazy stuff and sick as well,
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WAYNE CONNELL: right?
NADINE VOGEL: Um.
WAYNE CONNELL: you know, just to really pushing through,
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WAYNE CONNELL: but finally caught up to her. Um, but in, I,
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WAYNE CONNELL: after we got married in 94 and in 96,
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WAYNE CONNELL: she coined the phrase invisible disabilities.
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WAYNE CONNELL: And the reason why she coined that phrase is we'd park in accessible parking and
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WAYNE CONNELL: people would scream at us. They're like, you're not disabled.
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WAYNE CONNELL: You're not in a wheelchair, or you're not a senior, or whatever. They would,
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WAYNE CONNELL: yeah, they would just get angry. And if you really understand that it's a,
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WAYNE CONNELL: it's really an anger because they want the right person to park there.
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WAYNE CONNELL: And so my wife had written some little pamphlets, um,
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WAYNE CONNELL: and one of her pamphlets she had written,
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WAYNE CONNELL: cuz friends and family would always ask her, what's multiple sclerosis?
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WAYNE CONNELL: So she wrote, she wrote one about multiple sclerosis, you know what,
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WAYNE CONNELL: and so she wrote one called Don't Judge by Appearances.
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WAYNE CONNELL: And at the end of the pamphlet, I really like what it says at the end. It says,
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WAYNE CONNELL: the person standing in front of you, um, uh,
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WAYNE CONNELL: you know, excuse. Yeah. So the, it really is about that,
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WAYNE CONNELL: that the person that has the right to park here may be standing in front of you,
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WAYNE CONNELL: right? So they have the right to park there, but we, you made,
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WAYNE CONNELL: they made it look like they don't.
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WAYNE CONNELL: And so that's why invisible disabilities was really kind of key.
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WAYNE CONNELL: And what we really define it as, it's, it's really the symptoms of an illness,
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WAYNE CONNELL: right? So it's, it's pain, fatigue, dizziness, cognitive dysfunctions,
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WAYNE CONNELL: brain injuries, learning disorders, you know, mental health,
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WAYNE CONNELL: all these different things that you can't see. Um,
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WAYNE CONNELL: a lot of illnesses or disabilities may manifest themselves visibly,
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WAYNE CONNELL: where you maybe persons in a wheelchair or maybe you see they have a limp or,
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WAYNE CONNELL: you know, um, you see some physical acting out or whatever it is,
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WAYNE CONNELL: it's causing something that we can see.
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WAYNE CONNELL: But it's those invisible things that people don't believe and don't understand.
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WAYNE CONNELL: Um, and we use the term disability for a reason. It's a real, it really is a,
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WAYNE CONNELL: it's a technical definition, right?
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WAYNE CONNELL: Says definition of you're some part of your life is impaired, right? I mean,
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WAYNE CONNELL: think about it. When we wear glasses, um, we have an impairment of our vision,
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WAYNE CONNELL: right? People don't think about that, right? And so we don't use it as like,
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WAYNE CONNELL: it's this negative term. If you have a disability, oh,
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WAYNE CONNELL: you're this second class citizen. Although society does do that,
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WAYNE CONNELL: but we don't do that.
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WAYNE CONNELL: That's what we're goal is an organization to bring awareness to that. Um,
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WAYNE CONNELL: but it's those invisible things that people don't get, they don't understand.
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WAYNE CONNELL: So when you use terms like hidden or things like that, right? Um,
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WAYNE CONNELL: we're not trying to hide anything. In fact, our,
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WAYNE CONNELL: our vision statement of our organization is that people would be invisible no
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WAYNE CONNELL: more. And we would treat everybody the same. Right?
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WAYNE CONNELL: I always say the most abnormal people or people climb Mount Everest or run
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WAYNE CONNELL: Ironman triathlons, right? I mean, the rest of us are,
NADINE VOGEL: I'm with you. Yeah.
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WAYNE CONNELL: Seriously. Uh, you know, but you know, it, it's,
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WAYNE CONNELL: it's not a definition of normal or not normal.
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WAYNE CONNELL: It's that we should treat everybody the same.
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WAYNE CONNELL: And a lot of times with use of an assistive device,
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WAYNE CONNELL: which may be glasses or maybe a cane or maybe medicine, um,
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WAYNE CONNELL: that people are able to accomplish things they couldn't do before, right.
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WAYNE CONNELL: Because of their disability. So that's really what it is about, is that, um, uh,
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WAYNE CONNELL: words are really important. And in fact, I want to clarify the word, uh,
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WAYNE CONNELL: disabled versus disability, right? Yeah.
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WAYNE CONNELL: This is a whole big thing is that disability is, you know,
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WAYNE CONNELL: somebody has something that's impacting them.
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WAYNE CONNELL: Disabled means that they're unable to do major life functions like work, right?
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NADINE VOGEL: Mm-hmm.
WAYNE CONNELL: They're unable to do those things. And what's happened is,
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WAYNE CONNELL: in societies we've said, we've, we've actually labeled people say, oh,
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WAYNE CONNELL: you're disabled. Well, those are people that may be in a wheelchair,
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WAYNE CONNELL: but they're, you know, they can go, I'm in Colorado, they go skiing,
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WAYNE CONNELL: they do sled hockey, they play rugby, they're all in a wheelchair, right? Um,
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WAYNE CONNELL: they're, they're not disabled. They have a disability.
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WAYNE CONNELL: And so we wanna be real clear on that.
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WAYNE CONNELL: And that's why you see the term disabled and they capitalize the A and stuff.
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NADINE VOGEL: Mm-hmm.
WAYNE CONNELL: Well, the problem is, is that there are people that are unable.
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WAYNE CONNELL: So you can't label one or the other. You just use the term as what it is.
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WAYNE CONNELL: And those people who, who are actually disabled, they're unable to do things,
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WAYNE CONNELL: but that doesn't change their value. Right? That doesn't mean mean oh,
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WAYNE CONNELL: they're not productive. So we don't care about 'em. No.
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WAYNE CONNELL: They're just as valuable as anybody else. Um, you know,
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WAYNE CONNELL: I always say spend 30 min 30 minutes with somebody who's been chronic from
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WAYNE CONNELL: chronic pain for 30 years and your life will be changed.
NADINE VOGEL: Oh yeah.
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WAYNE CONNELL: What they do every day just to make it is like it is climbing Mount Everest for
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WAYNE CONNELL: them. Right. And it's amazing, you know, what they're doing. And so that's,
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WAYNE CONNELL: that's why I really want, so, so using terms is very important and yeah,
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WAYNE CONNELL: I don't think people are trying to hide things.
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WAYNE CONNELL: The only reason why anybody would wanna hide anything is because people don't
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WAYNE CONNELL: believe 'em. And that's a problem. And we're about believing people.
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NADINE VOGEL: Right? No, absolutely. And, and I think it,
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NADINE VOGEL: it equates also to this whole issue of person first language versus identity
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NADINE VOGEL: first. You know, I, I have a disability,
WAYNE CONNELL: right?
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NADINE VOGEL: Versus like you said, I'm disabled or, you know,
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NADINE VOGEL: an autistic man versus a man who has autism. I, I that's, that's been coming up.
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NADINE VOGEL: You know, it's interesting. When the A-D-A first started,
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NADINE VOGEL: we moved to person first language appropriately, so,
WAYNE CONNELL: right.
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NADINE VOGEL: But what we're finding, um, and Norma,
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NADINE VOGEL: I think you and I talked about this just recently, is that
NORMA STANLEY: absolutely,
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NADINE VOGEL: we're finding some of the millennials, um, and then certain communities,
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NADINE VOGEL: deaf community,
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NADINE VOGEL: autistic community are starting to go back to or have an interest in identity
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NADINE VOGEL: first.
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NADINE VOGEL: And so I'm wondering if you have any thoughts on that as it relates to invisible
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NADINE VOGEL: disability.
WAYNE CONNELL: Well,
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WAYNE CONNELL: It is part of your identity in the sense of it what makes you who you are,
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WAYNE CONNELL: right? You have blue eyes, you know, have a disability, right?
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WAYNE CONNELL: In some sense it does. You know, you think of actors who, um,
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WAYNE CONNELL: some great actors who might, you know, live a depression, right?
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WAYNE CONNELL: And it makes them this incredible actor because it's part of who they are.
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WAYNE CONNELL: So you can't separate it out. Um,
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WAYNE CONNELL: but it doesn't mean that we have to label people and say, oh, they're this way.
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WAYNE CONNELL: Right? Well, um, autism, what I love about autism in the sense of that,
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WAYNE CONNELL: that they, that they said we're on a spectrum, right?
NADINE VOGEL: Yes.
WAYNE CONNELL: So, so spectrum.
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WAYNE CONNELL: But as a friend of mine who was diagnosed with autism at 55, right?
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WAYNE CONNELL: So not as a child, right? Um, he talks about,
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WAYNE CONNELL: it's not a spectrum like in a linear spectrum, it's actually more of like a, a,
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WAYNE CONNELL: a pie or a circle where it's
NADINE VOGEL: Right.
WAYNE CONNELL: It's all over. You know?
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WAYNE CONNELL: And this is how all disabilities are. Cuz what if you have multiple,
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WAYNE CONNELL: like my wife has, right? You know, people always wanna say, oh,
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WAYNE CONNELL: your wife has ms. Oh, is she in a wheelchair? That's the thing they always ask.
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WAYNE CONNELL: It's like,
NADINE VOGEL: yes,
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NADINE VOGEL: Yes.
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WAYNE CONNELL: But a wheelchair is for somebody who is unable to walk, right?
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WAYNE CONNELL: And so your ms, which is multiple scars on the spine and in the brain,
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WAYNE CONNELL: may not necessarily be impairing your walking as much now.
NADINE VOGEL: Right?
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WAYNE CONNELL: She originally couldn't walk when she was first diagnosed. Um,
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WAYNE CONNELL: but I know if we go anywhere, uh, any long distances, you know, I,
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WAYNE CONNELL: I will push her in a wheelchair. She can't push herself in a wheelchair.
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WAYNE CONNELL: It's just too hard to do. Or she might use a walker,
NADINE VOGEL: right.
WAYNE CONNELL: Or a cane.
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WAYNE CONNELL: But a lot of times if it's a short distance, she doesn't Right. But we, we,
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WAYNE CONNELL: we go immediately to, oh,
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WAYNE CONNELL: she's not in a case she doesn't have a cane or she doesn't have a disability.
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WAYNE CONNELL: Um, and by the way, like some special privilege to have a disability or,
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WAYNE CONNELL: or some special privilege to park close. Let me tell you.
NADINE VOGEL: Right.
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WAYNE CONNELL: Most people with a disability, if they were feeling up to it,
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WAYNE CONNELL: they would rather walk anyways. Right?
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NADINE VOGEL: Absolutely.
WAYNE CONNELL: But
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WAYNE CONNELL: I, I was actually challenged by somebody that said who didn't have a discipline.
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WAYNE CONNELL: They said, but what they said,
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WAYNE CONNELL: what's tough for them is when they go into parking lot and there's a bunch of
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WAYNE CONNELL: accessible spots that are empty.
NADINE VOGEL: Yes.
WAYNE CONNELL: They said, Hey,
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WAYNE CONNELL: if you have the right to park there, please park there so we can get a spot.
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WAYNE CONNELL: Cuz you just took my spot that I can't take yours. Right. And I, I'm like, wow,
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WAYNE CONNELL: I hadn't really thought about that.
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NADINE VOGEL: I hadn't thought of it that way.
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But back to this person centered, um, you know,
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WAYNE CONNELL: the ADA did some great things on accessibility, right?
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WAYNE CONNELL: The wheelchair symbol is an accessibility symbol.
NADINE VOGEL: Right?
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WAYNE CONNELL: I would say the problem is it's become a disability symbol and that's created
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WAYNE CONNELL: this whole dynamics. And that's why invisible disabilities,
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WAYNE CONNELL: and we'll talk about this a little bit later,
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WAYNE CONNELL: what we're doing with our symbol and really making it the symbol of
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WAYNE CONNELL: disabilities. Cuz it's, it's an inclusive symbol,
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WAYNE CONNELL: but really the whole aspect of, originally, if you think about it,
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WAYNE CONNELL: you're in a wheelchair and people, you say, oh,
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WAYNE CONNELL: you must need help or you can't do anything. And so they'd be like, Hey,
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WAYNE CONNELL: I don't wanna be your inspiration. I don't need your help.
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WAYNE CONNELL: I don't need any of those things, which is legitimate, right?
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WAYNE CONNELL: There's a lot of people that don't. Right. You know,
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WAYNE CONNELL: they're doing amazing things. You know, back to Mount Everest. I mean,
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WAYNE CONNELL: think about Eric Rimer who climbed Mount Everest and he's blind, right? I mean,
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WAYNE CONNELL: so it's, it's, it's not, um, what people can do or can't do.
NADINE VOGEL: Yeah.
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WAYNE CONNELL: But one of the things we wanna think about is, is that, um,
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WAYNE CONNELL: there are people nowadays that are like, Hey, I need help. But the problem is,
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WAYNE CONNELL: is we, society has said for 30 years,
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WAYNE CONNELL: people with disabilities don't want your help.
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WAYNE CONNELL: They don't want your pity or whatever. Well, I can tell you what,
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WAYNE CONNELL: when you lose a dream because of you become chronically ill and somebody says
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WAYNE CONNELL: to you, I'm really sorry for your loss, that's okay.
NADINE VOGEL: Yeah.
WAYNE CONNELL: The problem is,
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WAYNE CONNELL: we've tried to say it's not, don't say that to them, you know? Well, it's,
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WAYNE CONNELL: it's a person. Each person's different. Right. So you interact with a person,
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WAYNE CONNELL: and I say, you get to, you gotta get to become a friend first.
NADINE VOGEL: Yep.
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WAYNE CONNELL: Once your friend, then you can interact on it. Right?
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NADINE VOGEL: Absolutely. No, no. A absolutely. So, Norma, I'm just curious, you know,
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NADINE VOGEL: Sierra Norma's daughter uses a wheelchair, so I'm just wondering what, you know,
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NADINE VOGEL: what you are thinking, hearing this? What are your thoughts?
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NORMA STANLEY: Well, you know, that's everything he shared is,
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NORMA STANLEY: is is something that I've definitely experienced.
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NORMA STANLEY: And me having an invisible dis disability myself with the epilepsy. I mean,
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NORMA STANLEY: I can't tell. I never know when a seizure might come on. And by the grace of God,
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NORMA STANLEY: I haven't had one in over four years. But you just never know.
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NORMA STANLEY: Um, and so I, the whole point is, I mean,
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NORMA STANLEY: I think it's really important that people understand that this is something that
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NORMA STANLEY: we still have to educate people on because they do. I've had situations where,
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NORMA STANLEY: um, you know,
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NORMA STANLEY: people have gotten a little testy because I parked right in that dis
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NORMA STANLEY: disability spot.
WAYNE CONNELL: Right.
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NORMA STANLEY: My
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NORMA STANLEY: Daughter, my daughter wasn't necessarily with me.
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NORMA STANLEY: I try not to do that that often, but, you know, I'm a little older and, and,
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NORMA STANLEY: and, you know,
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NORMA STANLEY: because of taking care of her sometimes it has made me not as physically able
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NORMA STANLEY: as I once was. So sometimes I do park there, um,
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NORMA STANLEY: but I don't do it often.
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NORMA STANLEY: But the point is that people shouldn't be judging people without knowing their
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NORMA STANLEY: situations.
NADINE VOGEL: Right.
WAYNE CONNELL: Right.
NADINE VOGEL: We
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NADINE VOGEL: Are a judgmental society.
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NORMA STANLEY: We are.
WAYNE CONNELL: Exactly right. Well,
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WAYNE CONNELL: we wanna rate everybody on a scale of one to five stars. And we wanna say that.
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NORMA STANLEY: Yes.
WAYNE CONNELL: You know, you, you know, um, uh, I mean,
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WAYNE CONNELL: I think about all these rating systems like American Idol and Facebook and
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WAYNE CONNELL: everything, and what they've done to our society is, you know, uh Right.
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WAYNE CONNELL: You put up a picture about something you love. Like, we, we have two goats,
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WAYNE CONNELL: which are actually therapy goats to my wife.
NORMA STANLEY: I wanted
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NORMA STANLEY: To ask you about those goats.
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WAYNE CONNELL: Yeah. They're incredible. They're, they're amazing.
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WAYNE CONNELL: But my wife will put up a picture, one of 'em, and somebody goes, I hate goats.
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WAYNE CONNELL: And we're like, we didn't ask for your opinion. Okay. Sorry. It's like,
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WAYNE CONNELL: you know, but, but you're, you're absolutely right.
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WAYNE CONNELL: We prejudged by what we see in five seconds.
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WAYNE CONNELL: So think about a person walking across, you're, you're pulling into the,
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WAYNE CONNELL: the grocery store and they're walking on the crosswalk and they're rocking real
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WAYNE CONNELL: slow. Okay. And they're not texting. Right. They don't have their phone out. So,
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WAYNE CONNELL: so our first response is, hurry up, I'm trying to get to the store and we're,
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WAYNE CONNELL: we're angry at 'em.
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WAYNE CONNELL: Or it's the person that's driving slow on the highway in the right lane. Right.
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WAYNE CONNELL: And they're driving slow and you're like, oh,
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WAYNE CONNELL: they must be like 90 or something like that. You're thinking,
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WAYNE CONNELL: but the reality is,
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WAYNE CONNELL: is that we don't know by a quick judgment of what they're going through.
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WAYNE CONNELL: I would've no idea that you have epilepsy.
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WAYNE CONNELL: But the reality is for you is you're like, Hey, if I'm having a problem,
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WAYNE CONNELL: I need to be able to get to my car. I need to know where my car is. Right.
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WAYNE CONNELL: You know, those things that we, we forget about why people need to park there,
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WAYNE CONNELL: and as you said is, Hey, let me tell you,
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WAYNE CONNELL: it's just like getting a service animal.
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WAYNE CONNELL: We actually wrote a whole pamphlet about service animals.
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WAYNE CONNELL: They actually almost counsel people not to get 'em,
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WAYNE CONNELL: because you're gonna get ridiculed for having one. People go, well,
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WAYNE CONNELL: I wish I could have my pet in the restaurant. Right,
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NADINE VOGEL: Right.
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WAYNE CONNELL: Or whatever it is.
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WAYNE CONNELL: And they have no idea the ridicule you get for having an some
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WAYNE CONNELL: sort of assistive device. Right. Or, I, I, I remember we went to, uh,
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WAYNE CONNELL: we went to Disneyland, um, when my wife and I were first dating,
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WAYNE CONNELL: and we went with my family, you know,
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WAYNE CONNELL: and we gotta go on the back end of the lines at the time, you know,
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WAYNE CONNELL: we rode Space Mountain twice while my brother,
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WAYNE CONNELL: younger brother was in line with my mom. Right. They were like, oh, you lucky.
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WAYNE CONNELL: It's like, Hey, you know what my wife would say? Yeah. I, she goes,
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WAYNE CONNELL: I would park in the end of the parking lot. You can,
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WAYNE CONNELL: we have a great bumper sticker that says, if you want my parking space,
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WAYNE CONNELL: take my disability with it. Right.
NADINE VOGEL: I
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NADINE VOGEL: Love it.
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WAYNE CONNELL: I mean, the reality is, you know, hey, if you, you know, it's not a joy,
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WAYNE CONNELL: but it's, it's a necessity.
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NADINE VOGEL: Right. Well, and it's interesting too,
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NADINE VOGEL: and I know we need to go to commercial break, but, but before I, before we do,
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NADINE VOGEL: I do wanna say one thing because Norma, you said, you know,
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NADINE VOGEL: now you have epilepsy,
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NADINE VOGEL: you have c you try not to use the accessible spot that often.
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NADINE VOGEL: That that alone speaks to our societal issues of actually
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NADINE VOGEL: feeling guilty for using it.
NORMA STANLEY: Yeah.
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NADINE VOGEL: When you are entitled to it because of your medical issues. Right.
NORMA STANLEY: Yeah.
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NADINE VOGEL: But I think that that really says a lot about exactly everything you're saying,
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NADINE VOGEL: Wayne, is that, you know, judgment and, ugh, I can't speak.
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WAYNE CONNELL: Well, that's why our mission is, uh, you know, it,
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WAYNE CONNELL: it's not going away anytime soon.
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WAYNE CONNELL: I can tell you that we haven't solved society's problems yet,
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WAYNE CONNELL: and it's a long road, but,
NORMA STANLEY: oh boy.
WAYNE CONNELL: But we're in the fight.
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WAYNE CONNELL: 26 years we've been doing this, and we're not, we're not going away.
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NADINE VOGEL: No, no. That is for sure.
NADINE VOGEL: And today we are here with Wayne Cannell,
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NADINE VOGEL: and I do have to apologize publicly. I've been saying his last name wrong,
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NADINE VOGEL: and that's really bad.
WAYNE CONNELL: That's
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WAYNE CONNELL: Okay.
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NADINE VOGEL: Well, but I know you that's even worse, right? So Wayne Connell the,
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NADINE VOGEL: um, invisible Disabilities Association, president, C-E-O, and Founder.
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NADINE VOGEL: So we're having this just fabulous conversation about society and
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NADINE VOGEL: stupidity. I'll just chalk it up to stupidity, uh, and judgment. Right. And,
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NADINE VOGEL: and things like that when it comes to the,
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NADINE VOGEL: especially when it comes to invisible disabilities. Um, so,
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NADINE VOGEL: you know, you mentioned something, uh,
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NADINE VOGEL: Wayne earlier about having an inclusive symbol.
WAYNE CONNELL: Yes.
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NADINE VOGEL: Um, instead of, you know,
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NADINE VOGEL: the wheelchair as always the symbol for disability and, and more so,
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NADINE VOGEL: so that it can be more accessibility. So what, can you talk to us about that
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NADINE VOGEL: A little bit?
WAYNE CONNELL: Yeah. So, so our, our vision has always been,
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WAYNE CONNELL: like we talked about earlier,
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WAYNE CONNELL: the wheelchair symbol is a great symbol for accessibility. You can park here,
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WAYNE CONNELL: here's a restroom you can use. Here's a door you can use.
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WAYNE CONNELL: It really is an accessible symbol. Um,
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WAYNE CONNELL: but 80% of the people that have a disability don't use any assisted device.
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WAYNE CONNELL: Right.
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WAYNE CONNELL: So there's this huge percentage of the population of people with disabilities as
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WAYNE CONNELL: well as chronic illness. Right.
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WAYNE CONNELL: We consider chronic illness and disabilities varies very along those same lines.
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WAYNE CONNELL: Um, 50 50% of Americans have, uh,
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WAYNE CONNELL: at least one chronic illness and disabilities could be 20 to 25% of the
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WAYNE CONNELL: population. I mean, it's a, it's a big number. Um, so, uh, so our symbol, uh,
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WAYNE CONNELL: which is a person, or some people like to say, it's funny, they say it's a,
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WAYNE CONNELL: it's a person with their arm around you, or it's an angel with their wings.
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WAYNE CONNELL: I've heard of, it's a superhero with their cape.
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WAYNE CONNELL: Somebody said it's somebody breaking the tape, you know,
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WAYNE CONNELL: putting their arms back and breaking the tape. But all these different things.
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WAYNE CONNELL: But what's real exciting is, is that, uh,
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WAYNE CONNELL: we first did this in the state of Alaska. It's now in Colorado,
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WAYNE CONNELL: and it's now in Utah as of, uh, October this year where you can actually, um,
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WAYNE CONNELL: uh, um, on your driver's license or a state id,
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WAYNE CONNELL: you can actually apply and get a designated symbol. And it's, the symbol is our,
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WAYNE CONNELL: our symbol of our disability on those driver's license or state IDs.
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WAYNE CONNELL: So that when you are in a situation maybe with law enforcement or, or maybe, uh,
343
00:18:13.870 --> 00:18:14.810
WAYNE CONNELL: you know, your, your,
344
00:18:15.000 --> 00:18:17.770
WAYNE CONNELL: your son or daughter has autism and they're at school and they're like, oh,
345
00:18:17.770 --> 00:18:20.930
WAYNE CONNELL: they're just acting up and they actually have a ID that's got on and say, no,
346
00:18:20.930 --> 00:18:24.810
WAYNE CONNELL: this is a really legitimate, I have autism. Right.
NADINE VOGEL: Right.
WAYNE CONNELL: So it brings us,
347
00:18:25.110 --> 00:18:28.090
WAYNE CONNELL: and our, our goal is to do that nationwide. Um,
348
00:18:28.110 --> 00:18:29.890
WAYNE CONNELL: and around the world we've been talking with, uh,
349
00:18:29.890 --> 00:18:33.250
WAYNE CONNELL: a lot of the other countries as well about this because it really is a symbol
350
00:18:33.270 --> 00:18:37.410
WAYNE CONNELL: of, it's, it's a person. Because if you think about it, that's the key. Uh,
351
00:18:37.410 --> 00:18:41.770
WAYNE CONNELL: you know, um, it's not a, it's not a, uh, a device like a wheelchair.
NADINE VOGEL: Right,
352
00:18:41.770 --> 00:18:44.130
WAYNE CONNELL: right, right. Um, in fact, some of the states even have a,
353
00:18:44.160 --> 00:18:46.770
WAYNE CONNELL: have the wheelchair where they're in motion. Yes. You know,
354
00:18:46.770 --> 00:18:50.010
WAYNE CONNELL: where they're leaning forward. Well, um, a lot of people with, with, uh,
355
00:18:50.010 --> 00:18:51.490
WAYNE CONNELL: invisible disabilities and chronic illness,
356
00:18:51.640 --> 00:18:54.890
WAYNE CONNELL: they can't push themselves in a wheelchair. Right. So it just,
357
00:18:54.910 --> 00:18:57.450
WAYNE CONNELL: all it does is it, it ma, when you use that symbol,
358
00:18:57.470 --> 00:18:59.450
WAYNE CONNELL: it makes them feel like they're, they're, you know,
359
00:18:59.450 --> 00:19:03.330
WAYNE CONNELL: they're less than the community. Right. Instead of being part of the community.
360
00:19:03.510 --> 00:19:06.650
WAYNE CONNELL: And so that's what we're doing with our symbol. Um, we,
361
00:19:07.110 --> 00:19:08.810
NADINE VOGEL: You had it in three states, you said?
WAYNE CONNELL: Um,
362
00:19:09.120 --> 00:19:12.130
WAYNE CONNELL: It's in three states right now for sure. Right. Yeah. It's in, uh, Alaska, um,
363
00:19:12.370 --> 00:19:14.410
WAYNE CONNELL: Colorado, and in, uh, Utah now. Um,
364
00:19:14.430 --> 00:19:16.130
NADINE VOGEL: So how do you get this into the state?
WAYNE CONNELL: You
365
00:19:16.130 --> 00:19:18.450
WAYNE CONNELL: Just, when you go to apply for your driver's license or you don't even have,
366
00:19:18.450 --> 00:19:19.190
WAYNE CONNELL: you can do it in,
367
00:19:19.190 --> 00:19:22.450
NADINE VOGEL: But how are you guys, how's the organization getting the states to embrace it?
368
00:19:22.670 --> 00:19:22.920
WAYNE CONNELL: Oh,
369
00:19:22.920 --> 00:19:26.770
WAYNE CONNELL: Well, it's a lot of work. Well, it's always been our,
370
00:19:26.990 --> 00:19:29.530
WAYNE CONNELL: our dream to do this. And so, um, uh,
371
00:19:29.530 --> 00:19:31.650
WAYNE CONNELL: and since we have such a national and recognized symbol,
372
00:19:31.650 --> 00:19:34.650
WAYNE CONNELL: that's one of the reasons why they're doing it. And as an organization,
373
00:19:34.910 --> 00:19:38.370
WAYNE CONNELL: you know, um, we've protected the symbol and it protects the states as well.
374
00:19:38.390 --> 00:19:41.610
WAYNE CONNELL: And that way they're just not picking something randomly or whatever. It's,
375
00:19:41.670 --> 00:19:45.610
WAYNE CONNELL: you know, we want consistency across, uh, it's an easy symbol to read, you know,
376
00:19:45.610 --> 00:19:48.050
WAYNE CONNELL: you can, it's scalable. That's one of the great things about it too.
377
00:19:48.310 --> 00:19:52.330
WAYNE CONNELL: And we even have IDs that you can get through our organ website for anybody.
378
00:19:52.670 --> 00:19:54.650
WAYNE CONNELL: You can order 'em in the US or around the world.
379
00:19:54.710 --> 00:19:58.690
WAYNE CONNELL: And one of the th our dreams is as you, they're, they're on a little placard,
380
00:19:58.710 --> 00:20:00.650
WAYNE CONNELL: you know, that you can put around your, on a,
381
00:20:01.050 --> 00:20:02.650
WAYNE CONNELL: a little chain around your neck or whatever. Right.
382
00:20:02.750 --> 00:20:06.610
WAYNE CONNELL: And so if you walk into a store, um, that is disability friendly,
383
00:20:06.630 --> 00:20:08.730
WAYNE CONNELL: and that would be our goal, is these stores would be educated.
384
00:20:08.730 --> 00:20:11.130
WAYNE CONNELL: They'd have a little sticker, maybe a little thing on their website.
385
00:20:11.390 --> 00:20:14.610
WAYNE CONNELL: As you walk in, the person, the first person that sees you would say,
386
00:20:14.710 --> 00:20:19.050
WAYNE CONNELL: how may I help you? Now you don't have to go find somebody you know,
387
00:20:19.050 --> 00:20:22.930
WAYNE CONNELL: at the back of the store and find a manager and then explain to them why you
388
00:20:22.930 --> 00:20:24.850
WAYNE CONNELL: need help. And they're asking you questions.
389
00:20:24.850 --> 00:20:27.170
WAYNE CONNELL: They probably shouldn't be asking you, what's your disability?
390
00:20:27.310 --> 00:20:28.530
WAYNE CONNELL: Why do you need help? You know,
391
00:20:28.530 --> 00:20:31.090
WAYNE CONNELL: all these things that they don't have really need to know. Um,
392
00:20:31.270 --> 00:20:34.770
WAYNE CONNELL: so that's really our goal is to really educate people to say, Hey, you know,
393
00:20:35.110 --> 00:20:39.890
WAYNE CONNELL: people sometimes need help. Right. And they're afraid to ask for help. You know,
394
00:20:39.890 --> 00:20:42.330
WAYNE CONNELL: we talked about parking, right? We're afraid to park in the parking. Right.
395
00:20:42.330 --> 00:20:45.890
WAYNE CONNELL: Because we're gonna get ridiculed. People gonna write nasty notes on my, uh,
396
00:20:45.890 --> 00:20:49.460
WAYNE CONNELL: that's the only reason why people don't park there, because otherwise you,
397
00:20:49.600 --> 00:20:53.140
WAYNE CONNELL: why wouldn't you park there if you need it? Right. And so, um,
398
00:20:53.280 --> 00:20:56.860
WAYNE CONNELL: that's what we're trying to do is just, just say, bring visibility to it. Right.
399
00:20:57.040 --> 00:21:01.100
WAYNE CONNELL: And the visibility is not a negative thing. And back to what we started Right.
400
00:21:01.100 --> 00:21:04.060
WAYNE CONNELL: Earlier about the whole issue of it is part of your identity.
401
00:21:04.570 --> 00:21:08.860
WAYNE CONNELL: It's not who you are, but it's part of Right. Who you are. Right. And so, um,
402
00:21:09.010 --> 00:21:11.380
WAYNE CONNELL: it's okay because guess what,
403
00:21:11.830 --> 00:21:14.580
WAYNE CONNELL: we're all eventually gonna get some sort of disability or chronic illness
404
00:21:14.700 --> 00:21:17.220
NADINE VOGEL: Absolutely.
WAYNE CONNELL: Which is gonna happen.
NADINE VOGEL: Absolutely.
WAYNE CONNELL: The older we get,
405
00:21:17.220 --> 00:21:19.380
WAYNE CONNELL: it's gonna happen eventually.
WAYNE CONNELL: Right. So, um,
406
00:21:19.560 --> 00:21:21.940
WAYNE CONNELL: we need to understand that that's part of life.
407
00:21:22.160 --> 00:21:25.580
WAYNE CONNELL: We need to treat people with value even if they can't work,
408
00:21:25.580 --> 00:21:29.980
WAYNE CONNELL: as I mentioned earlier. Um, you know, cuz our society's all about productivity.
409
00:21:30.090 --> 00:21:32.900
WAYNE CONNELL: Well, if you're not productive, well that's not right either. Right.
410
00:21:33.290 --> 00:21:37.740
WAYNE CONNELL: Everybody has value. My wife would love to work, but she's unable to work.
411
00:21:37.740 --> 00:21:39.700
WAYNE CONNELL: Right. In fact, we have people say to that, well,
412
00:21:39.700 --> 00:21:42.340
WAYNE CONNELL: you're lucky you don't have to work. You know, I'm like, I'm like,
413
00:21:42.340 --> 00:21:47.300
WAYNE CONNELL: you're lucky that she doesn't, you know, But she would love to. Um,
414
00:21:47.470 --> 00:21:48.340
NADINE VOGEL: Right. So she
415
00:21:48.340 --> 00:21:49.173
WAYNE CONNELL: Doesn't have visibil ability.
416
00:21:49.360 --> 00:21:53.300
NADINE VOGEL: Let me, let me build on that a second if I may. So just cuz you touched on work.
417
00:21:54.080 --> 00:21:58.580
NADINE VOGEL: So in the workplace we have a big issue with folks with
418
00:21:58.650 --> 00:22:03.420
NADINE VOGEL: invisible disabilities feeling comfortable disclosing
419
00:22:03.440 --> 00:22:05.580
NADINE VOGEL: the disability.
WAYNE CONNELL: Right.
NADINE VOGEL: Should they need,
420
00:22:05.580 --> 00:22:10.100
NADINE VOGEL: especially should they need an accommodation of some kind in the workplace.
WAYNE CONNELL: Yes.
421
00:22:10.440 --> 00:22:12.980
NADINE VOGEL: Um, any thoughts? I'm sure you have a lot of thoughts. Well, I'm sure you have a lot of thoughts.
422
00:22:12.980 --> 00:22:13.820
WAYNE CONNELL: This is, this is a,
423
00:22:14.100 --> 00:22:14.933
NADINE VOGEL: I know I have a few minutes.
424
00:22:15.130 --> 00:22:19.620
WAYNE CONNELL: This is a busy area for us, right? Um, this is a busy area for us. Is that, uh,
425
00:22:19.960 --> 00:22:22.220
WAYNE CONNELL: um, yeah. Trying to make it safe in the workplace.
426
00:22:22.680 --> 00:22:25.540
WAYNE CONNELL: And the only way we're gonna do that is just for people to understand that it's
427
00:22:25.760 --> 00:22:29.980
WAYNE CONNELL: normal in the sense for people to have disabilities. And that, um,
428
00:22:30.040 --> 00:22:33.460
WAYNE CONNELL: if a person's working for you and let's say they have bipolar disorder and
429
00:22:33.460 --> 00:22:34.660
WAYNE CONNELL: they've been working for you for four years,
430
00:22:35.280 --> 00:22:37.180
WAYNE CONNELL: why would we think that they're going to,
431
00:22:37.180 --> 00:22:41.980
WAYNE CONNELL: all of a sudden when they disclose it do work different? They're not, in fact,
432
00:22:41.980 --> 00:22:44.380
WAYNE CONNELL: the reason why they're disclosing is cuz they need an accommodation.
433
00:22:44.380 --> 00:22:46.540
WAYNE CONNELL: Like you said, you have to disclose it. Um,
434
00:22:46.720 --> 00:22:50.500
WAYNE CONNELL: and that accommodation will action help 'em to do the work even better. Now,
435
00:22:50.500 --> 00:22:54.900
WAYNE CONNELL: the key is with the workplace is if you can't do the work because of your
436
00:22:54.900 --> 00:22:58.060
WAYNE CONNELL: disability, then you can't do the work.
437
00:22:58.320 --> 00:23:01.660
WAYNE CONNELL: And so I always say it has to be reasonable. Right. And, you know,
438
00:23:01.660 --> 00:23:03.580
WAYNE CONNELL: an unreasonable one would be, you know,
439
00:23:03.580 --> 00:23:06.380
WAYNE CONNELL: your vision impaired and you wanna drive a bus and so they have to hire somebody
440
00:23:06.380 --> 00:23:09.340
WAYNE CONNELL: to drive the bus for you. Right? Okay. That's kind of unreasonable. Right.
441
00:23:10.080 --> 00:23:14.380
WAYNE CONNELL: But most accommodations are reasonable. And so it is going to be a,
442
00:23:14.600 --> 00:23:18.300
WAYNE CONNELL: and and it's, um, uh, when it comes to even in the workplace, you know,
443
00:23:18.300 --> 00:23:19.900
WAYNE CONNELL: when it comes to diversity, equity, and inclusion,
444
00:23:19.990 --> 00:23:21.780
WAYNE CONNELL: disability is normally not thought of very,
445
00:23:21.780 --> 00:23:24.180
WAYNE CONNELL: it's very low percentage of companies. Think about it,
446
00:23:24.250 --> 00:23:25.220
WAYNE CONNELL: it's kind of the last thing.
447
00:23:25.220 --> 00:23:29.340
WAYNE CONNELL: Even though it's the largest minority and of course disabilities, naturally,
448
00:23:29.460 --> 00:23:32.940
D-E-I, because it doesn't, illnesses no respecter of anybody.
449
00:23:32.960 --> 00:23:34.300
WAYNE CONNELL: It doesn't matter who you are,
450
00:23:34.530 --> 00:23:38.060
anybody can have a disability or a chronic illness. Right? So, um,
451
00:23:38.370 --> 00:23:41.300
WAYNE CONNELL: it's gonna take a lot of work and it's great work for like what you guys are
452
00:23:41.300 --> 00:23:45.980
WAYNE CONNELL: doing, Nadine and Norma and stuff. And it's, it is, but it's working together, um,
453
00:23:46.240 --> 00:23:49.500
WAYNE CONNELL: to, to help people just believe. People start believing people.
454
00:23:49.500 --> 00:23:52.100
WAYNE CONNELL: And that's what invisible disabilities does. In fact, our theme this year,
455
00:23:52.100 --> 00:23:55.660
WAYNE CONNELL: we just had our gala recently and Invisible Disabilities Week around the world.
456
00:23:56.200 --> 00:24:00.500
WAYNE CONNELL: Our theme this year for the years is time to believe. And the tagline is,
457
00:24:00.500 --> 00:24:04.700
WAYNE CONNELL: just because you can't see it doesn't mean it's not real. Right.
NADINE VOGEL: Hello.
458
00:24:04.730 --> 00:24:08.060
WAYNE CONNELL: Seriously. And so it's uh, um, and I think it's just,
459
00:24:08.130 --> 00:24:12.500
WAYNE CONNELL: it's continually educating and, um, understanding. Um,
460
00:24:12.600 --> 00:24:13.260
WAYNE CONNELL: and by the way,
461
00:24:13.260 --> 00:24:16.820
WAYNE CONNELL: I don't think people truly are trying to be judgmental in most cases.
462
00:24:17.260 --> 00:24:20.660
WAYNE CONNELL: I think they do, is they don't know what to say. And so, um,
463
00:24:20.840 --> 00:24:23.460
WAYNE CONNELL: that's why we wrote the book. But you look good, you know, book,
464
00:24:23.460 --> 00:24:26.100
NADINE VOGEL: I was just gonna ask you about this, that is about,
NORMA STANLEY: yes, yes,
465
00:24:26.210 --> 00:24:28.940
WAYNE CONNELL: that book is about what to say and what not to say. You know, we,
466
00:24:29.160 --> 00:24:34.140
WAYNE CONNELL: we wrote the first edition in, in, in, um, 1998. Um, you know,
467
00:24:34.140 --> 00:24:34.980
WAYNE CONNELL: it's out there on the,
468
00:24:35.080 --> 00:24:37.620
WAYNE CONNELL: you can get it on Amazon and all those on our website and stuff,
469
00:24:37.620 --> 00:24:40.340
WAYNE CONNELL: but people buy 'em in bulk even because they give 'em out to all their friends
470
00:24:40.340 --> 00:24:43.700
WAYNE CONNELL: and family because they don't know what to say. Invariably they'll say, well,
471
00:24:43.800 --> 00:24:46.500
WAYNE CONNELL: I'm tired too. Or You're tired. What? Well,
472
00:24:46.500 --> 00:24:49.620
WAYNE CONNELL: I went to work and then I went to the zoo and then we went to the theater and
473
00:24:49.620 --> 00:24:52.220
WAYNE CONNELL: then we stayed up late and watch a movie. You're tired from doing things.
474
00:24:52.520 --> 00:24:55.660
WAYNE CONNELL: People with a chronic illness, when they say they're tired, they're,
475
00:24:55.660 --> 00:24:59.460
WAYNE CONNELL: it's bone crushing. They're so exhausted they can't even sleep. And so,
476
00:24:59.720 --> 00:25:01.660
WAYNE CONNELL: but we try to relate, we always wanna relate.
477
00:25:01.760 --> 00:25:06.220
WAYNE CONNELL: The problem is we're not armchair doctors.
NADINE VOGEL: Right.
WAYNE CONNELL: You know, I mean,
478
00:25:06.220 --> 00:25:07.660
WAYNE CONNELL: we wanna think we are, but we're not.
479
00:25:07.880 --> 00:25:12.780
WAYNE CONNELL: And so it really is just educating people to say it's part of life in a sense.
480
00:25:13.030 --> 00:25:16.140
WAYNE CONNELL: Right. You know, um, we, we all could be impacted by it.
481
00:25:16.400 --> 00:25:19.460
WAYNE CONNELL: And if you wanna know something about what somebody's going through, one,
482
00:25:19.680 --> 00:25:22.540
WAYNE CONNELL: listen to them validate what they're going through.
NADINE VOGEL: Right.
WAYNE CONNELL: You know,
483
00:25:22.540 --> 00:25:24.500
WAYNE CONNELL: you probably hear this. They're like, I don't wanna talk to my friend.
484
00:25:24.500 --> 00:25:27.780
WAYNE CONNELL: All I wanna do is talk about their illness. Oh my goodness. How depressed.
485
00:25:27.800 --> 00:25:30.540
WAYNE CONNELL: And then you say, you know what, that's cuz you're not listening to them.
486
00:25:30.640 --> 00:25:33.980
WAYNE CONNELL: If you've listened to them and say, oh my goodness, lupus,
487
00:25:34.380 --> 00:25:36.900
WAYNE CONNELL: I don't know what lupus is. Can you tell me what lupus is?
488
00:25:36.920 --> 00:25:40.260
WAYNE CONNELL: I'd like to learn about lupus. Right. Ask them, they're an expert. You know,
489
00:25:40.380 --> 00:25:41.500
WAYNE CONNELL: I mean, Norma, you're an expert.
490
00:25:41.600 --> 00:25:44.780
WAYNE CONNELL: I'm sure when it comes to your seizure disorders. I mean, you're probably like,
491
00:25:44.840 --> 00:25:47.340
WAYNE CONNELL: oh, you know. Yeah. If somebody actually asked you,
492
00:25:47.440 --> 00:25:50.220
WAYNE CONNELL: can you tell me how it impacts you? And
NORMA STANLEY: Yeah.
WAYNE CONNELL: You know,
493
00:25:50.400 --> 00:25:53.660
WAYNE CONNELL: you would probably be like, oh, I'd love to share with you. Right. Otherwise,
494
00:25:54.000 --> 00:25:55.380
WAYNE CONNELL: you know, you're afraid to share.
495
00:25:55.800 --> 00:25:58.980
WAYNE CONNELL: And so the reason why people sharing is nobody's listening.
496
00:25:59.010 --> 00:26:03.660
WAYNE CONNELL: They're not making accommodations. They don't care. They, you know, and so, um,
497
00:26:03.660 --> 00:26:06.980
WAYNE CONNELL: then everybody keeps it inside. Right.
NADINE VOGEL: Exactly.
WAYNE CONNELL: You know, you know,
498
00:26:06.980 --> 00:26:09.820
WAYNE CONNELL: we think of it this in the veterans community, this is why I believe, you know,
499
00:26:09.820 --> 00:26:13.140
WAYNE CONNELL: you have a huge suicide rate in the veterans community because No,
500
00:26:13.410 --> 00:26:15.980
WAYNE CONNELL: they don't wanna share with anybody. Cuz if they share with somebody,
501
00:26:15.980 --> 00:26:18.260
WAYNE CONNELL: people will think, oh, look at this strapping, you know,
502
00:26:18.580 --> 00:26:21.980
WAYNE CONNELL: military guy and how come he's got, he can't go out in public anymore. Right.
503
00:26:22.400 --> 00:26:26.300
WAYNE CONNELL: You know,
NADINE VOGEL: he suddenly becomes the victim.
WAYNE CONNELL: Well, exactly right. Well,
504
00:26:26.320 --> 00:26:29.300
WAYNE CONNELL: if he had the opportunity to share or she had the opportunity to share and
505
00:26:29.300 --> 00:26:33.260
WAYNE CONNELL: people were listening Yeah. And they say, oh my goodness. You know, wow.
506
00:26:33.600 --> 00:26:36.540
WAYNE CONNELL: How can I help? And if the person says, this is how you can help.
507
00:26:36.920 --> 00:26:39.260
WAYNE CONNELL: The only person with a disability is the only one that can tell you that.
508
00:26:39.640 --> 00:26:41.220
WAYNE CONNELL: We always think we know how to help.
509
00:26:41.480 --> 00:26:44.340
WAYNE CONNELL: And that's what people struggle with originally with the A-D-A. Right.
510
00:26:44.600 --> 00:26:48.420
WAYNE CONNELL: We thought we knew how to help people and we didn't.
NADINE VOGEL: And we
511
00:26:48.420 --> 00:26:49.340
NADINE VOGEL: Still don't. Yeah.
NORMA STANLEY: That's real.
512
00:26:49.840 --> 00:26:50.673
WAYNE CONNELL: And we still don't. Right.
513
00:26:51.240 --> 00:26:52.420
NORMA STANLEY: We and we still don't.
514
00:26:52.690 --> 00:26:54.820
WAYNE CONNELL: Well, you gotta become their friend first. Right.
515
00:26:54.840 --> 00:26:58.980
WAYNE CONNELL: You can't go to the person on the street and tell 'em what you think you have to
516
00:26:58.980 --> 00:27:00.780
WAYNE CONNELL: say, Hey, you know, become their friend first.
517
00:27:01.000 --> 00:27:03.580
WAYNE CONNELL: And then you have the opportunity to ask them, Hey,
518
00:27:03.580 --> 00:27:05.300
WAYNE CONNELL: is there anything I could do to help? You know,
519
00:27:05.300 --> 00:27:09.100
WAYNE CONNELL: can I come over once a month and bring you lunch because I know how hard it is
520
00:27:09.100 --> 00:27:11.020
WAYNE CONNELL: for you to even or do a load of laundry for you.
521
00:27:11.160 --> 00:27:15.860
WAYNE CONNELL: Or I'm going to the store already, can I pick you some stuff up? You know,
522
00:27:15.860 --> 00:27:17.220
WAYNE CONNELL: things easy. Things like that.
523
00:27:18.200 --> 00:27:22.540
NADINE VOGEL: So, go ahead. I'm sorry.
NORMA STANLEY: Well, you know, I, I like, I was, you know,
524
00:27:22.580 --> 00:27:23.300
NORMA STANLEY: I was out of town.
525
00:27:23.300 --> 00:27:25.900
NORMA STANLEY: I was outta the country and my sister was taking care of my daughter for me
526
00:27:25.900 --> 00:27:29.700
NORMA STANLEY: while I was gone. And my daughter's total care.
WAYNE CONNELL: Mm. Sure.
NORMA STANLEY: And you know,
527
00:27:29.770 --> 00:27:34.300
NORMA STANLEY: when I came back and she said, I simply do not know how you do all you do
528
00:27:34.970 --> 00:27:35.803
WAYNE CONNELL: not caregivers
529
00:27:35.940 --> 00:27:40.380
NORMA STANLEY: A child and still be able to function. I said, well, you do what you have to do.
530
00:27:40.640 --> 00:27:41.380
NORMA STANLEY: And to me, well
531
00:27:41.380 --> 00:27:44.580
WAYNE CONNELL: Caregivers is a big part of what we do. Right. It's, it's,
NORMA STANLEY: you just do it.
532
00:27:44.580 --> 00:27:46.820
WAYNE CONNELL: You got first you gotta believe you're a caregiver.
533
00:27:46.930 --> 00:27:49.380
WAYNE CONNELL: That the person has an illness, that's their first step.
534
00:27:49.440 --> 00:27:52.340
WAYNE CONNELL: And that's why the book was written cuz people didn't even believe their family
535
00:27:52.340 --> 00:27:56.820
WAYNE CONNELL: members. Right. But yeah, caregivers are my heroes and, you know,
536
00:27:56.820 --> 00:28:01.220
WAYNE CONNELL: being one for 30, almost 30 years and myself, you know, uh, yeah.
537
00:28:01.220 --> 00:28:04.900
WAYNE CONNELL: It is difficult to, and um, even a lot of times we don't get it. You know,
538
00:28:04.900 --> 00:28:07.820
WAYNE CONNELL: sometimes I'm, I my wife will go, you just never get it.
539
00:28:08.060 --> 00:28:12.180
WAYNE CONNELL: Although she knows I do.
NADINE VOGEL: Right.
WAYNE CONNELL: But there are times where I look at her and go,
540
00:28:12.180 --> 00:28:16.780
WAYNE CONNELL: oh, you know, she can do everything and um, no she can't.
NADINE VOGEL: Right, right, right.
541
00:28:16.780 --> 00:28:20.420
WAYNE CONNELL: And she's on, you know, and so we, it is, it is a difficult thing,
542
00:28:20.420 --> 00:28:22.220
WAYNE CONNELL: but it is working those two together Right.
543
00:28:22.240 --> 00:28:24.020
As a caregiver and understanding and,
544
00:28:24.080 --> 00:28:26.620
WAYNE CONNELL: and giving a caregiver's breaks once in a while. Like,
545
00:28:26.620 --> 00:28:29.180
WAYNE CONNELL: your sister was gave you a break to allow you to go travel.
NORMA STANLEY: It's
546
00:28:29.180 --> 00:28:29.840
NORMA STANLEY: A blessing.
547
00:28:29.840 --> 00:28:34.460
WAYNE CONNELL: Oh my goodness. That's amazing. And so, um, yeah, it, uh,
548
00:28:35.240 --> 00:28:38.740
WAYNE CONNELL: we, we, we've, this is just part of normal society in a sense,
549
00:28:38.960 --> 00:28:42.500
WAYNE CONNELL: but we've made it like people with disabilities are second class or they're
550
00:28:42.520 --> 00:28:44.060
WAYNE CONNELL: lesser.
NADINE VOGEL: Right.
WAYNE CONNELL: Well, think about it,
551
00:28:44.570 --> 00:28:47.980
WAYNE CONNELL: it's like the only minority group where you're called a liar and a faker about
552
00:28:47.980 --> 00:28:51.420
WAYNE CONNELL: it. It's like, seriously, you know, I mean, that's horrible.
553
00:28:52.180 --> 00:28:55.860
WAYNE CONNELL: Somebody shares with you story and you go, oh, you don't look sick. It's like,
554
00:28:55.890 --> 00:28:57.500
WAYNE CONNELL: well, who asked you?
NADINE VOGEL: Right.
555
00:28:57.700 --> 00:28:58.533
WAYNE CONNELL: I just,
556
00:28:58.540 --> 00:29:01.260
WAYNE CONNELL: I just told you what I'm going through.
NADINE VOGEL: Right.
557
00:29:01.360 --> 00:29:02.900
WAYNE CONNELL: And now you're telling 'em you don't believe me.
558
00:29:03.230 --> 00:29:05.580
NADINE VOGEL: Right. No, it's, it's, it's true. It's,
559
00:29:05.840 --> 00:29:06.940
WAYNE CONNELL: So that's why that
560
00:29:06.940 --> 00:29:08.100
NADINE VOGEL: Much more, that makes it worse.
561
00:29:08.440 --> 00:29:11.780
WAYNE CONNELL: That's why our organization will, like I said, we'll always have a mission.
562
00:29:11.840 --> 00:29:15.860
NADINE VOGEL: You know, invariably somebody will say something really, sometimes it's mean.
563
00:29:15.890 --> 00:29:20.340
NADINE VOGEL: Sometimes it's just un you know, uneducated or unaware.
NADINE VOGEL: Right. Um,
564
00:29:20.440 --> 00:29:23.810
NADINE VOGEL: but we'll always be there. We hear those stories every day.
565
00:29:24.110 --> 00:29:26.730
NADINE VOGEL: And some of 'em are heartbreaking. You know, some of 'em heartbreaking where,
566
00:29:27.270 --> 00:29:31.370
NADINE VOGEL: uh, you know, a wife becomes, uh, disabled after 20 years or,
567
00:29:31.470 --> 00:29:35.610
and the husband says she's just faking it and takes the kids. And the, the,
568
00:29:35.990 --> 00:29:39.170
NADINE VOGEL: the judge says she's faking it and now she's out totally out of everything.
569
00:29:39.170 --> 00:29:42.180
NADINE VOGEL: And we, we hear those stories, you know, um,
570
00:29:42.180 --> 00:29:44.980
NADINE VOGEL: or doctors who are married to doctors and they don't even believe their,
571
00:29:44.980 --> 00:29:48.180
NADINE VOGEL: their family member is, their family member was in a car accident.
572
00:29:48.260 --> 00:29:49.940
NADINE VOGEL: I know a specific one of that. It's like,
573
00:29:50.840 --> 00:29:53.060
NADINE VOGEL: it it's on the news that they were in a car accident.
574
00:29:53.060 --> 00:29:54.860
NADINE VOGEL: This is real what they're going through. Right.
575
00:29:55.310 --> 00:29:58.620
NADINE VOGEL Right. They, they deem it as fake news, which is the whole
NADINE VOGEL: Well,
576
00:29:58.640 --> 00:30:02.900
NADINE VOGEL: And and I'll tell you what, when you value people, um, nobody said it was easy.
577
00:30:02.900 --> 00:30:05.500
NADINE VOGEL: Like you were talking about Norma, I mean, with your daughter. It's not easy.
578
00:30:05.580 --> 00:30:08.100
NADINE VOGEL: I can tell you that, you know, people always say, how can you, you know,
579
00:30:08.100 --> 00:30:11.060
NADINE VOGEL: I've been married, uh, over 28 years. Hey,
580
00:30:11.120 --> 00:30:13.740
NADINE VOGEL: we didn't know it was gonna be this hard even though I signed up for it. Right.
581
00:30:13.900 --> 00:30:17.300
NADINE VOGEL: I mean, I knew when I went into this that, that there was a disability. Right.
582
00:30:17.760 --> 00:30:20.620
NADINE VOGEL: But we didn't know it was gonna be hard. But you know what it is, day to day,
583
00:30:20.620 --> 00:30:22.660
NADINE VOGEL: that's the only way I can make it. It's day-to-day.
584
00:30:22.880 --> 00:30:27.260
NADINE VOGEL: And it's doing things like this. Hope is when you hope is not about a cure.
585
00:30:27.810 --> 00:30:31.140
NADINE VOGEL: Hope is when we can share with each other how we make it through each day.
586
00:30:31.150 --> 00:30:33.300
NADINE VOGEL: Right?
NORMA STANLEY: Absolutely.
NADINE VOGEL: That's what hope is. You know,
587
00:30:33.300 --> 00:30:36.740
NADINE VOGEL: hope is that people will believe me, people will care about me.
588
00:30:36.740 --> 00:30:39.660
NADINE VOGEL: People won't abandon me. You know, if you think about that.
589
00:30:39.660 --> 00:30:41.300
NADINE VOGEL: Cause that's what happens, right? We stop calling
590
00:30:41.500 --> 00:30:44.420
WAYNE CONNELL: E
NORMA STANLEY: and encourage each other to keep moving and, and
WAYNE CONNELL: yeah.
591
00:30:44.610 --> 00:30:48.420
NADINE VOGEL: It's a day-to-day thing, right? And, and so, um, yeah.
592
00:30:48.930 --> 00:30:53.580
NADINE VOGEL: Yeah. It's, it's really important. So as we are running out of time, um,
593
00:30:53.720 --> 00:30:58.380
NADINE VOGEL: sad to say what two things. One, what's next for the organization?
594
00:30:58.800 --> 00:31:01.020
NADINE VOGEL: You know, is something big, something exciting?
595
00:31:01.240 --> 00:31:03.860
NADINE VOGEL: Is it just we're gonna keep on trucking, keep on doing what we're doing?
596
00:31:04.200 --> 00:31:05.033
NADINE VOGEL: So what's next?
597
00:31:05.080 --> 00:31:09.180
NADINE VOGEL: And then I absolutely want you to share how folks can get in touch with you and
598
00:31:09.180 --> 00:31:12.780
NADINE VOGEL: the organization.
WAYNE CONNELL: Sure.
NADINE VOGEL: Um, because, you know, as you were talking about,
599
00:31:13.240 --> 00:31:15.540
NADINE VOGEL: you know, the, the states that have embraced the,
600
00:31:15.600 --> 00:31:18.340
NADINE VOGEL: the image for like the license and things, I'm like, well,
601
00:31:18.340 --> 00:31:22.540
NADINE VOGEL: maybe there'll be someone listening who's from another state who'll say, yes,
602
00:31:22.710 --> 00:31:26.180
NADINE VOGEL: let's do it. Um, so yeah. So share both of those please.
603
00:31:26.290 --> 00:31:27.980
WAYNE CONNELL: Well, what's exciting is, you know, obviously right,
604
00:31:27.980 --> 00:31:30.820
WAYNE CONNELL: getting into other states and stuff with the symbol and really bringing that
605
00:31:30.820 --> 00:31:33.780
WAYNE CONNELL: visibility, um, out there. I mean, we're even looking at,
606
00:31:33.780 --> 00:31:37.100
WAYNE CONNELL: in the web three space and other places where, um, you know,
607
00:31:37.120 --> 00:31:40.900
WAYNE CONNELL: or with sports teams, you know, what all areas can that symbol be where people,
608
00:31:40.960 --> 00:31:44.540
WAYNE CONNELL: you know, maybe it's on a different type of id, right? Maybe it's, uh, you know,
609
00:31:44.560 --> 00:31:46.980
WAYNE CONNELL: on a, you buy a ticket somewhere and it's got the symbol on it.
610
00:31:46.980 --> 00:31:49.700
WAYNE CONNELL: So when the person takes the ticket, they go, oh, hey, by the way,
611
00:31:49.700 --> 00:31:52.980
WAYNE CONNELL: these are the resources we have.
NADINE VOGEL: Right.
WAYNE CONNELL: You know, things like that. So it's,
612
00:31:53.250 --> 00:31:57.140
WAYNE CONNELL: it's really, it's really trying to find ways to, uh, to embrace and,
613
00:31:57.160 --> 00:32:00.860
WAYNE CONNELL: and to really get businesses involved, to be disability friendly businesses.
614
00:32:00.860 --> 00:32:04.660
WAYNE CONNELL: Right. And where they can do simple things. We all think it's so hard.
615
00:32:04.660 --> 00:32:07.860
WAYNE CONNELL: And the reason why is cuz we've got laws like ADA and we've got HIPAA
616
00:32:07.910 --> 00:32:11.900
WAYNE CONNELL: we've got all these crazy, these laws which were put in place for good reasons.
617
00:32:12.200 --> 00:32:12.780
WAYNE CONNELL: The problem is,
618
00:32:12.780 --> 00:32:16.140
WAYNE CONNELL: is that we are using them as excuses not to do things in a sense, right.
619
00:32:16.140 --> 00:32:18.300
WAYNE CONNELL: Because we're afraid, we're afraid we're gonna get sued,
620
00:32:18.300 --> 00:32:21.220
WAYNE CONNELL: we're afraid that these, these things are gonna happen. So, um,
621
00:32:21.240 --> 00:32:23.180
WAYNE CONNELL: but we're looking at, like I said, in the web three space, right?
622
00:32:23.180 --> 00:32:26.260
WAYNE CONNELL: So when you're looking at virtual stuff online, you're looking at, you know,
623
00:32:26.260 --> 00:32:27.093
WAYNE CONNELL: in the gaming world,
624
00:32:27.120 --> 00:32:30.140
WAYNE CONNELL: all these places where there are people that are living with disabilities and
625
00:32:30.140 --> 00:32:32.300
WAYNE CONNELL: if, and if they wanna self-disclose, by the way,
626
00:32:32.300 --> 00:32:34.540
WAYNE CONNELL: these symbols are self-disclosed on these driver's license.
627
00:32:34.920 --> 00:32:37.460
WAYNE CONNELL: You don't have to get 'em if you don't want people to know.
NADINE VOGEL: Right? Right.
628
00:32:37.460 --> 00:32:39.980
WAYNE CONNELL: You don't have to get it. But it's not, and that's why it's done that way.
629
00:32:39.980 --> 00:32:42.420
WAYNE CONNELL: In fact, it doesn't tell anybody what the disability is.
630
00:32:42.830 --> 00:32:43.530
NADINE VOGEL: Right.
631
00:32:43.530 --> 00:32:44.620
WAYNE CONNELL: It's for a conversation.
632
00:32:44.720 --> 00:32:47.700
WAYNE CONNELL: And that's what we wanna have is just to strike up a conversation Yeah.
633
00:32:48.040 --> 00:32:50.780
WAYNE CONNELL: For it to be a different conversation than, um, oh,
634
00:32:50.780 --> 00:32:52.940
WAYNE CONNELL: they're slurring their speech. They must be drunk. No, maybe they,
635
00:32:53.010 --> 00:32:56.300
WAYNE CONNELL: from their stroke, they, they slur their speech, right. They're able to drive,
636
00:32:56.760 --> 00:32:59.860
WAYNE CONNELL: but there's a slurred speech issue, you know, aphasia or something like that.
637
00:33:00.000 --> 00:33:02.180
WAYNE CONNELL: So, um, so that's really our,
638
00:33:02.240 --> 00:33:06.300
WAYNE CONNELL: our focus is to continue to figure out how we can do that and to provide, um,
639
00:33:06.380 --> 00:33:07.580
WAYNE CONNELL: podcasts on our own. You know,
640
00:33:07.580 --> 00:33:10.900
WAYNE CONNELL: we do what's called the Invisible Encourage podcast that encourages,
641
00:33:11.060 --> 00:33:14.500
WAYNE CONNELL: I encourage, because we all need encourage in the midst of difficult times. Yes.
642
00:33:14.600 --> 00:33:16.180
WAYNE CONNELL: Um, uh, you know, to get through it.
643
00:33:16.180 --> 00:33:17.540
WAYNE CONNELL: You don't need courage when things are going great.
644
00:33:17.640 --> 00:33:19.460
WAYNE CONNELL: You need courage when things are difficult. So,
645
00:33:19.600 --> 00:33:22.740
WAYNE CONNELL: and it's been real difficult last few years, so we've had lots of courage.
NADINE VOGEL: Yeah,
646
00:33:22.960 --> 00:33:23.760
NADINE VOGEL: For sure.
647
00:33:23.760 --> 00:33:27.100
WAYNE CONNELL: So it really, it's continued to put out great resources in those things. Um,
648
00:33:27.160 --> 00:33:29.540
WAYNE CONNELL: but we are a very small organization and, uh,
649
00:33:29.540 --> 00:33:32.180
WAYNE CONNELL: it takes a lot to fund stuff around the world. Right. So,
650
00:33:32.970 --> 00:33:36.580
WAYNE CONNELL: best ways to get ahold of us obviously would be invisible disabilities.org.
651
00:33:36.710 --> 00:33:40.060
WAYNE CONNELL: We're on all the social media platforms, and if people got, you know,
652
00:33:40.060 --> 00:33:42.220
they've got ideas or they, you know, like you said, they,
653
00:33:42.220 --> 00:33:45.300
WAYNE CONNELL: they got a connection to a congressperson or something. Um, by the way,
654
00:33:45.400 --> 00:33:49.060
WAYNE CONNELL: we do have in the Congress right now, it's called the Disability Id Act of 2022.
655
00:33:49.560 --> 00:33:53.460
WAYNE CONNELL: Um, it's k it's kind of overshadowed by a few other things happening right now.
656
00:33:53.880 --> 00:33:55.460
WAYNE CONNELL: But, um, it, uh, you know,
657
00:33:55.460 --> 00:33:59.100
WAYNE CONNELL: it's in one of the committees and it would provide grant funding to other states
658
00:33:59.160 --> 00:34:01.580
WAYNE CONNELL: to be able to do the same thing that they're doing in these three states.
659
00:34:01.920 --> 00:34:05.180
WAYNE CONNELL: So hope, we're hoping that, that once we get through this political season,
660
00:34:05.180 --> 00:34:08.820
WAYNE CONNELL: that somebody will start looking at the, those bills and we can get it through.
661
00:34:09.170 --> 00:34:12.180
WAYNE CONNELL: It's a no-brainer. Everybody should want to be behind it. So,
662
00:34:13.040 --> 00:34:17.020
WAYNE CONNELL: but you can get it. You can reach as a contact@invisibledisabilities.org.
663
00:34:17.040 --> 00:34:20.500
WAYNE CONNELL: That's the best way to do it. People send us stuff all the time. They're like,
664
00:34:20.840 --> 00:34:23.700
WAYNE CONNELL: you know, news media stuff, or they wanna, you know, they know a,
665
00:34:24.100 --> 00:34:28.300
WAYNE CONNELL: a person that needs some sometimes help. You know, we, we don't, you know,
666
00:34:28.300 --> 00:34:29.780
WAYNE CONNELL: we're not a funding organization.
667
00:34:29.780 --> 00:34:33.980
WAYNE CONNELL: We don't provide legal advice or medical advice. Ok. We're cure of the heart.
668
00:34:33.980 --> 00:34:35.140
WAYNE CONNELL: We go home with you when you're,
669
00:34:35.290 --> 00:34:36.860
WAYNE CONNELL: when you need help with your friends and family.
670
00:34:36.960 --> 00:34:38.940
WAYNE CONNELL: So that's a big thing we love to do. So.
671
00:34:39.530 --> 00:34:44.020
NADINE VOGEL: Well, we wanna thank you for your heart today. Uh, Norma, this has been amazing,
672
00:34:44.020 --> 00:34:45.060
NADINE VOGEL: hasn't it?
NORMA STANLEY: Yeah. Thank
673
00:34:45.060 --> 00:34:47.860
NORMA STANLEY: You so much. I, I'm looking, I'm gonna look you guys up again.
674
00:34:48.890 --> 00:34:51.220
NADINE VOGEL: It's, it's such a, you know, it's such an important, I mean,
675
00:34:51.220 --> 00:34:54.820
NADINE VOGEL: all the topics that we talk about are important, but it is so impactful to,
676
00:34:54.880 --> 00:34:58.540
NADINE VOGEL: it is so many people. Right. And, you know, for all the reasons that you said,
677
00:34:58.540 --> 00:35:02.680
NADINE VOGEL: Wayne, you know, it's, it's the disabilities we don't see. And,
678
00:35:02.680 --> 00:35:03.320
NADINE VOGEL: and those are the,
679
00:35:03.320 --> 00:35:06.600
NADINE VOGEL: those are the individuals that are getting really hurt in many ways. The most.
680
00:35:06.790 --> 00:35:10.480
NADINE VOGEL: Whether it's because they're working, but not because they were like, you know,
681
00:35:10.480 --> 00:35:13.000
NADINE VOGEL: there's just so many things going on behind the scenes. So,
682
00:35:13.260 --> 00:35:15.160
NADINE VOGEL: and I think one of the things you said, you know,
683
00:35:15.550 --> 00:35:20.120
NADINE VOGEL: just because you don't see it does not mean it's not real.
WAYNE CONNELL: Yep.
684
00:35:20.460 --> 00:35:24.720
NADINE VOGEL: That's, and, and it doesn't matter what it is that is just true. And we,
685
00:35:24.720 --> 00:35:28.920
NADINE VOGEL: and we have to remember that fact. So, um, Wayne Cannell,
686
00:35:29.410 --> 00:35:33.680
NADINE VOGEL: thank you so much. Thank you for the Invisible Disabilities Association.
687
00:35:34.290 --> 00:35:38.260
NADINE VOGEL: Thank Sherry, your wife for, because she's half of this, right? So everything
688
00:35:38.360 --> 00:35:40.500
WAYNE CONNELL: Oh my goodness. Yeah. I couldn't do it without her for sure.
689
00:35:40.920 --> 00:35:42.340
NADINE VOGEL: So thank you. And let's,
690
00:35:42.340 --> 00:35:45.460
NADINE VOGEL: let's give you that email one more time so folks know how to get ahold of you.
691
00:35:45.570 --> 00:35:45.860
WAYNE CONNELL: Yeah.
692
00:35:45.860 --> 00:35:48.500
WAYNE CONNELL: Contact@invisibledisabilities.org.
693
00:35:48.990 --> 00:35:50.180
NADINE VOGEL: Great. So for our,
WAYNE CONNELL: and that's
694
00:35:50.180 --> 00:35:51.013
WAYNE CONNELL: : On the website too, so.
695
00:35:51.120 --> 00:35:54.020
NADINE VOGEL: Oh, good. Okay. So for our listeners, go there, go there now
696
00:35:55.520 --> 00:36:00.460
NADINE VOGEL: go back. Right. Keep going back, Norma. Another great episode.
NORMA STANLEY: Yes, thank you.
697
00:36:00.460 --> 00:36:04.780
NADINE VOGEL: Well, very much. And thank you for our listeners of Disabled Lives Matter.
698
00:36:04.780 --> 00:36:07.420
NADINE VOGEL: Just remember, we're more than a podcast. We are a movement,
699
00:36:07.420 --> 00:36:12.220
NADINE VOGEL: and we will see you next time.
NORMA STANLEY: Be blessed everyone.
WAYNE CONNELL: Thank you.
NADINE VOGEL: Bye.
CLOSING COMMENT [Music playing in background.]
700
00:36:16.410 --> 00:36:20.640
VOICEOVER: Thank you for listening to this week's episode of Disabled Lives Matter.
701
00:36:21.100 --> 00:36:24.120
VOICEOVER: We look forward to seeing you next Thursday. Have a great week.
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702
00:36:26.620 --> 00:36:27.680
VOICEOVER: The views, information,
703
00:36:27.680 --> 00:36:31.360
VOICEOVER: or opinions expressed during the Disabled Lives Matter podcast series are solely
704
00:36:31.850 --> 00:36:35.880
VOICEOVER: those of the individuals involved and do not necessarily represent those as
705
00:36:35.880 --> 00:36:39.880
VOICEOVER: Springboard Global Enterprises, springboard Productions, and its employees,
706
00:36:39.880 --> 00:36:41.960
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Thursday Jun 01, 2023
Thursday Jun 01, 2023
Season 03, Episode 04
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: David Quilleon
INTRO [Music playing in background]
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Voice Over: Disabled Lives Matter. Here we go.
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Voice Over: Hello,
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Voice Over: and welcome to this week's episode of the Disabled Lives Matter podcast.
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Voice Over: Let's welcome co-host Nadine Vogel and Norma Stanley.
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Nadine Vogel: Hello everyone, and welcome to this episode of Disabled Lives Matter,
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Nadine Vogel: as you know, and as I always say, we are more than just a podcast.
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Nadine Vogel: We are a movement.
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Nadine Vogel: And today you all are gonna be moved by a friend of mine I haven't spoken to
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Nadine Vogel: in forever,
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Nadine Vogel: and it is David Quilleon and he likes to say chilling with Quilleon. So I,
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Nadine Vogel: Hey David, how's it going?
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David Quilleon: Hi, Nadine. It's great to see you. Thanks so much for having me, and, uh,
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David Quilleon: I'm super excited to be here.
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Nadine Vogel: Absolutely.
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Nadine Vogel: So you have been working with Best Buddies International for,
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Nadine Vogel: oh my God, is it like 15, 20 years or something?
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David Quilleon: Oh, my, it's even longer than that.
Nadine Vogel: Is it
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Nadine Vogel: Longer than that?
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David Quilleon: It's, it's so long.
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David Quilleon: So I got involved with Best Buddies in 1991 as a volunteer,
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David Quilleon: and then I started working for Best Buddies in 1996. So it's been a long,
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David Quilleon: it's been a long time, but I don't feel that old,
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David Quilleon: so I like So 15 years is fine for you to say.
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Nadine Vogel: Okay. Okay. There you go. Um, well,
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Nadine Vogel: you have had many roles I know in the organization.
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Nadine Vogel: I think today you are the Senior Vice President for Global Mission, right.
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Nadine Vogel: State Development and Operations.
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Nadine Vogel: And basically what that means is you're responsible for pretty much everything
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Nadine Vogel: that happens day to day for the organization. Is that pretty much, uh,
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David Quilleon: That's pretty much it, yeah. And anything, any other bonus, you know,
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David Quilleon: things as necessary come about.
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Nadine Vogel: I love it. I love it. So let's start with to educate everyone.
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Nadine Vogel: What is Best Buddies?
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David Quilleon: So, best Buddies is an organization that works with people with intellectual and
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David Quilleon: developmental disabilities to help them find friends, to help them get jobs,
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David Quilleon: uh, to be seen as leaders and get, uh,
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David Quilleon: really valuable leadership training skills as well as, um, inclusive living.
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David Quilleon: And, uh, we accomplish our mission through those four pillars.
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David Quilleon: And we work with college, high school, middle school, elementary school, adults,
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David Quilleon: uh, all, all, I like to say,
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David Quilleon: five to forever of individuals to really change the world with the power of
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David Quilleon: friendship.
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Nadine Vogel: So I don't think I realized that the age range was quite
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Nadine Vogel: so broad. Um, as a matter of fact, I know I didn't,
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Nadine Vogel: I don't know that for some reason I had it in a some reason I had it in a much
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Nadine Vogel: smaller window. So that's really exciting to know. Um,
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Nadine Vogel: so in terms of your pillars,
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Nadine Vogel: I'm gonna come back to that and we're gonna break down each pillar, but, um,
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Nadine Vogel: when we talk about best studies,
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Nadine Vogel: we talk about people with intellectual developmental disabilities,
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Nadine Vogel: and I know that for some, this confusion about what that even means.
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So, you know, people get Down syndrome, uh, maybe autism,
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Nadine Vogel: but I'm not sure they really understand the full scope and breadth of this.
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Nadine Vogel: So could you share that as well?
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David Quilleon: Sure, absolutely.
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David Quilleon: So when we make reference to people with intellectual and developmental
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David Quilleon: disabilities,
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David Quilleon: we're talking about individuals who may have a diagnosis around autism.
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David Quilleon: They might have Down Syndrome, they might have fetal X, they might have, um, or,
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David Quilleon: uh, fetal alcohol syndrome, fragile X Williams Syndrome.
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David Quilleon: There's a whole range and variety of different development disabilities,
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David Quilleon: cerebral Palsy, um, but also there's a,
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David Quilleon: a large group of people that are just un, you know, there's, there's no, um,
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David Quilleon: specific diagnosis. They just have the diagnosis of, of I D D, and they can't,
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David Quilleon: this, that wasn't, maybe it was just something that happened from a genetic, um,
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David Quilleon: situation. So, um, so, but those are all the individuals that we work with,
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David Quilleon: and it's typically the students, uh, individuals that are in special education,
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David Quilleon: uh, in our system, and we match them up with, uh,
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David Quilleon: typical students in their schools, you know, to be friends. Um,
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David Quilleon: but that's the, the diagnosis of the individuals that we're,
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David Quilleon: we're looking for is the individuals that may struggle with, um, social skills.
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David Quilleon: Um, and they, you know,
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David Quilleon: the number one reason why a person with a intellectual disability,
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David Quilleon: disability may not be successful in a job is due to a lack of social skills.
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David Quilleon: So these friendship skills, these opportunities to connect, uh, are really,
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David Quilleon: really important, um, for the future, uh,
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David Quilleon: for these individuals to get those much needed, um, social skills.
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Nadine Vogel: Yeah. And, you know,
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Nadine Vogel: the lack of social skills also seems to breed this
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Nadine Vogel: isolation, right. Social isolation and,
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Nadine Vogel: and then that causes even more issues. Um, so I, I love, I, I mean, I think,
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Nadine Vogel: you know, probably, gosh, now I'm gonna date myself, um,
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Nadine Vogel: my older daughter is 31, a really long time ago. Um,
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Nadine Vogel: I remember getting involved when Best Buddies was first forming in,
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Nadine Vogel: in Santa Monica in California. Sure. This is a really long time ago.
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Nadine Vogel: And when it first started, it was, you know, at that college level and,
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Nadine Vogel: and being a buddy for someone. But, you know,
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Nadine Vogel: by that point that person with disabilities has just experienced so much
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Nadine Vogel: isolation, um, you know, why not start younger?
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Nadine Vogel: So the fact that you're doing this so much younger, I love, but my question is,
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Nadine Vogel: you know what, I guess my question has to do with maturity, right?
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Nadine Vogel: So I can see a college-aged person being a buddy for a college-aged person,
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Nadine Vogel: but I'm wondering how do we get an elementary or a middle school child,
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Nadine Vogel: typical child,
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Nadine Vogel: to have the understanding to be a friend and buddy with
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Nadine Vogel: someone with an intellectual disability?
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David Quilleon: Sure. and, that's a great question.
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David Quilleon: And I think it's something that especially, you know,
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David Quilleon: during this time of the pandemic,
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David Quilleon: I think just the idea of like everyone, all of the students,
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David Quilleon: individuals in that elementary and middle school age, um,
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David Quilleon: I think I've really struggled about how to figure out their social skills.
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David Quilleon: Um, so much is happening virtual, uh, I see it even with my own children.
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David Quilleon: Like just, you know, when they want to do something with, with another kid,
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David Quilleon: I'm like, just pick up the phone and call them. You know? Right.
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David Quilleon: So I think there's a lot of value to helping our, you know,
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David Quilleon: kids develop those social skills of what that looks like.
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David Quilleon: What does a friend look like? And so, you know,
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David Quilleon: that's how Best Buddies Elementary School starts,
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David Quilleon: is we talk to all the students about what does it mean to be a good friend? Um,
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David Quilleon: how do you find friends? How do you make connection?
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David Quilleon: What are the kinds of conversations that you can have to build those meaningful
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David Quilleon: one-to-one friendships? What does that look like?
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David Quilleon: How often should you communicate? How can you make those direct?
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David Quilleon: Like find the things that you have in common,
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David Quilleon: maybe connect on things you don't have in common,
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David Quilleon: but really coach and give our kids the opportunity to explore and figure out
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David Quilleon: what kinds of friend they wanna be and what those values are of,
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David Quilleon: of friendship.
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David Quilleon: And that's really what sets the foundation for them to learn about inclusion,
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David Quilleon: to learn about acceptance,
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David Quilleon: to learn about making people feel that wonderful sense of belonging,
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David Quilleon: that as the human spirit, you know, really strives to have in our,
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David Quilleon: all of us. We all wanna feel that sense of belonging.
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David Quilleon: So it starts early and that's why it's been super important for us to get in
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David Quilleon: and, and talk to all of the kids, whether they have a disability or not, about,
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David Quilleon: um, the idea of friendship and what that should look like.
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Nadine Vogel: Well, and what I love about that is, you know, it just reminds me as always the,
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Nadine Vogel: the various things that we do to benefit individuals with disabilities, really,
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Nadine Vogel: if you take a look at it, benefits everyone.
David Quilleon: Absolutely. Absolutely.
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Nadine Vogel: It's just illustrates that point even further, which I, I absolutely love.
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Nadine Vogel: Um, you know,
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Nadine Vogel: cuz especially I know we're gonna talk about your next Tiller integrated
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Nadine Vogel: employment. So I was gonna say, but especially in employment, you know, when,
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Nadine Vogel: when Springboard goes in my company and we do trainings and things like that,
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Nadine Vogel: a lot of times the companies will be like, Ugh,
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Nadine Vogel: couldn't you have done this in the school?
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Nadine Vogel: So by the time they get to employment, like everybody is connected and aware,
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David Quilleon: Right.
Nadine Vogel: Right. So I love that you're doing this. Um, so one good,
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Nadine Vogel: the question about the friendship piece.
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Nadine Vogel: Are schools bringing you in school districts? How is this working?
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David Quilleon: Yes. I mean, and we wanna get into more school districts.
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David Quilleon: I think the more that we can create those inclusive communities around our
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David Quilleon: schools, the more powerful the program tends to be. Just long-term, the future.
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David Quilleon: I mean, that's how we make change. Because, you know, the idea really,
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David Quilleon: Nadine is that like, just from our typical students,
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David Quilleon: that if they get involved in Best Buddies and they have a,
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David Quilleon: a wonderful relationship with one of our individuals with intellectual
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David Quilleon: disabilities, that when they get to a point where they can hire someone,
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David Quilleon: or they're the C-E-O- of a company or running H-R, um,
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David Quilleon: that they'll be that much more likely to hire somebody
Nadine Vogel: Yeah.
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David Quilleon: With a disability because of the experience that they've had in their school.
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David Quilleon: So that's why we're working even to get into private schools and
Nadine Vogel: Okay.
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David Quilleon: To work in public schools and work with school districts and really helping them
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David Quilleon: to say, I mean, there's no cost to join Best Buddies.
Nadine Vogel: Right, right.
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David Quilleon: We have an awesome opportunity for the students to engage in leadership,
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David Quilleon: both for people with and without disabilities. It's inclusive leadership, which,
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David Quilleon: you know,
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David Quilleon: sometimes doesn't always happen for our participants with disabilities.
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David Quilleon: They're not, they're isolated from the other clubs.
Nadine Vogel: True.
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David Quilleon: And so Best Buddies is a club for everyone.
Nadine Vogel: Love it.
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David Quilleon: We're a club that accepts everyone,
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David Quilleon: and we're a club that really wants our individuals to just be really good
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David Quilleon: friends and
Nadine Vogel: love it.
David Quilleon: and have fun and, and enjoy an awesome high school,
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David Quilleon: college, middle school,
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David Quilleon: elementary school experience because of the inclusion aspect.
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Nadine Vogel: I know there's a reason I love Best Buddies.
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Nadine Vogel: So let's talk about the next pillar, which is the integrated employment.
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Nadine Vogel: So tell us a little bit what about what that means and how that plays out?
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David Quilleon: Yes. So with employment, uh,
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David Quilleon: we go in and support companies as well as individuals with intellectual
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David Quilleon: disabilities to help them find, um,
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David Quilleon: their dream job and what that looks like for them.
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David Quilleon: We coach companies directly on having to provide training if needed,
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David Quilleon: or just conversations with their supervisors about what it means to support an
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David Quilleon: individual with an intellectual disability.
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David Quilleon: We have job coaches that we refer to as employment consultants that, um,
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David Quilleon: go in and work directly with both our individuals and our companies to make sure
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David Quilleon: the placement is super successful. We have a 93% success rate, uh,
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David Quilleon: retention rate.
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Nadine Vogel: Wow.
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David Quilleon: Which is really fantastic that we're, you know, we're always really proud of.
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David Quilleon: And I think one of the things that makes us, uh, really different Nadine,
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David Quilleon: just as a, as a provider, is that we stay with the employer, uh,
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David Quilleon: and the participant for the life cycle of employment.
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David Quilleon: And we find that really important because, you know, what,
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David Quilleon: if the company wants to promote the individual to a new job, or
Nadine Vogel: Yeah.
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David Quilleon: Or what if the supervisor leaves,
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David Quilleon: which is also the number two reason why a person with a disability loses their
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David Quilleon: job, is because of a change in supervisor.
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David Quilleon: So we wanna be there for all of the different changes and the dynamics that
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David Quilleon: happen, uh,
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David Quilleon: in a corporate or company environment to be able to support them 100% on making
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David Quilleon: sure that they have a really great hire that's contributing to their,
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David Quilleon: their business bottom line.
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Nadine Vogel: That, that continuity is so important. And, you know, it,
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Nadine Vogel: it saddens me, but although I knew this anyway, when you said, you know,
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Nadine Vogel: if a supervisor leaves, often that individual loses their job. And what,
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Nadine Vogel: what upsets me so much about that is that it speaks to the fact that, you know,
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Nadine Vogel: disability inclusion,
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Nadine Vogel: disability mainstreaming is not seamlessly integrated throughout the
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Nadine Vogel: company. It ends up being, you know, person manager specific. Yeah. And,
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Nadine Vogel: and that's what we need to change. But while we're working on changing that,
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Nadine Vogel: the fact that you are there no matter what,
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Nadine Vogel: really helps that process along. That's, that's that.
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David Quilleon: Absolutely. Absolutely. Well, and I think too, there is this idea that,
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David Quilleon: you know, a person with an intellectual disability,
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David Quilleon: like let's say they started as a, you know,
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David Quilleon: a customer service agent at a grocery store bagging groceries
Nadine Vogel: mm-hmm.
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David Quilleon: That they wanna stay there forever.
Nadine Vogel: Right.
David Quilleon: You know,
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David Quilleon: and we all have to start somewhere. Right.
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David Quilleon: And if that's what the person wants to do for their life, awesome.
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David Quilleon: But the idea that, you know, that's a place, a starting place,
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David Quilleon: that they can gain some experience and then they move up and they can be,
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David Quilleon: you know, a stock, you know, they can stock or they can be a cashier,
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David Quilleon: or they can be a manager.
Nadine Vogel: I was gonna
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Nadine Vogel: Say, say they could be a manager. My goodness.
David Quilleon: Or they can dream big.
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David Quilleon: They can be an owner, they can be an entrepreneur, they can do,
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David Quilleon: there's just so many things. And so I just,
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David Quilleon: I I'm always really trying to push to everyone. Like,
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David Quilleon: we have to dream bigger and we have to think bigger about what's possible for
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David Quilleon: all of our participants with intellectual disabilities.
Nadine Vogel: Absolutely.
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David Quilleon: Cause I I just meet so many amazing people that have so many amazing abilities
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David Quilleon: and skillsets.
Nadine Vogel: Yeah.
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David Quilleon: That could be a huge contributor to any company if given the opportunity.
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Nadine Vogel: And, and in these companies, I, I imagine small, medium, large,
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Nadine Vogel: all sizes, all industries,
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David Quilleon: All industries, all sizes. I mean, we, people working in retail and, um,
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David Quilleon: legal entertainment. I mean, we have an individual that works at the, uh,
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David Quilleon: national Football League that does all the analytics around statistics in the
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David Quilleon: game.
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Nadine Vogel: Oh, how awesome is that?
David Quilleon: I mean, amazing.
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David Quilleon: He does great. In fact,
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David Quilleon: he's like called like 33 perfect games during the last n season.
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David Quilleon: So it's, I mean, amazing. And he does really great work. So, you know,
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David Quilleon: we have medical individuals working in medicine, in education,
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David Quilleon: so hospitality, I mean, I just think, you know, we,
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David Quilleon: we really try to find what that person's niche is and then certainly work
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David Quilleon: directly with the companies to find out what their needs are and identify a
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David Quilleon: really great participant for them to, to
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David Quilleon: Work.
Nadine Vogel: And the integrated employment is global.
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David Quilleon: It's global, yes. And, um, we have, you know,
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David Quilleon: offices that are doing jobs domestic here in the United States as well as, uh,
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David Quilleon: in a, a number of global places. And,
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David Quilleon: and if for some reason we don't have a presence in a particular area,
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David Quilleon: we certainly can help and provide some additional resources to support a company
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David Quilleon: in those particular areas.
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Nadine Vogel: And this, and this is, this can be such a huge help for companies,
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Nadine Vogel: especially that are in countries where there's quotas
David Quilleon: Yeah.
Nadine Vogel: Right.
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Nadine Vogel: For hiring individuals. One of the things we hear are often at Springboard is,
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Nadine Vogel: we don't know where to find these people. And I'm thinking, really?
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Nadine Vogel: But now they know they're hearing this
David Quilleon: Yes.
Nadine Vogel: And they know Contact best buddies.
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David Quilleon: Yes.
Nadine Vogel: And we'll talk about all the ways to, to reach you in, in, in just a bit.
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Nadine Vogel: Um, so let's, let's do this, um,
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Nadine Vogel: talk about the leadership development and I
David Quilleon: Sure.
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Nadine Vogel: I think people hearing that will assume that when we talk about that it's
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Nadine Vogel: leadership development of folks,
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Nadine Vogel: typical individuals that don't have the disabilities.
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Nadine Vogel: But I wanna be able to talk about that. It's both.
David Quilleon: it is both
Nadine Vogel: It's individuals.
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David Quilleon: One hundred percent both.
Nadine Vogel: with disabilities that are developing the leadership skills as well.
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Nadine Vogel: Today we are with David Quilleon, uh, senior Vice President from Best Buddies. He,
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Nadine Vogel: we established early on in this, uh,
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Nadine Vogel: podcast that he basically runs the world for Best Buddies. It's,
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Nadine Vogel: that's just the easy way to summarize it.
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Nadine Vogel: I'm sorry for all the other employees at Best Buddies.
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Nadine Vogel: I know you're all really important, do really good things,
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Nadine Vogel: but basically David runs the world. So now that we know that,
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Nadine Vogel: um, I'd love to continue our discussion. We've been talking about your pillars,
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Nadine Vogel: your four pillars, and pillar number three is leadership development.
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Nadine Vogel: And I'm wondering if you could speak to the leadership development aspects
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Nadine Vogel: for both the individuals with intellectual disabilities and
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Nadine Vogel: folks that are more typical.
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David Quilleon: Yes. Well,
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David Quilleon: so our leadership development pillar is really focused on individuals with
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David Quilleon: intellectual and developmental disabilities,
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David Quilleon: helping them develop public speaking skills,
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David Quilleon: which far too often are just not taught in a classroom. Yeah. You know,
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David Quilleon: a lot of classrooms are focused on living skills. Yeah. How to count money,
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David Quilleon: how to take transportation, how to do laundry.
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David Quilleon: But no one talks to 'em about what does it mean to be a leader.
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David Quilleon: And so Best Buddies focuses on that area around self-advocacy,
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David Quilleon: how you can contribute to your community, how you can share your story,
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David Quilleon: and really also make sure that ha that they have opportunities to speak,
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David Quilleon: because you only become a good public speaker by,
Nadine Vogel: by speaking,
David Quilleon: speaking,
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David Quilleon: and practicing and sharing your story. Right. So, um,
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David Quilleon: so we give a lot of those opportunities.
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David Quilleon: And then certainly the idea of leadership is also around our,
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David Quilleon: our chapters where we have individuals working as chapter presidents,
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David Quilleon: volunteering as officers. And, um, and again, we have inclusive leadership.
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David Quilleon: So we think it's really important for all of our students to have opportunities
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David Quilleon: to develop those leadership skills,
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David Quilleon: to learn about how to recruit other people to participate in the program,
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David Quilleon: to learn about how to host a group outing or an event, or think about what it,
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David Quilleon: what kind of accessibility things that the chapter needs to consider for their
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David Quilleon: next event. All of those go into that leadership development aspect of,
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David Quilleon: of being a really good community contributor and leader.
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Nadine Vogel: And, and, and I, you know,
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Nadine Vogel: I can only imagine how helpful that is for the pillar we were talking about
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Nadine Vogel: earlier, right. The integrated, uh, employment because you need to communicate,
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Nadine Vogel: you need to either communicate with your supervisor, with your colleagues, um,
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Nadine Vogel: we talked about, you know,
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Nadine Vogel: somebody may be wanting to be promoted and often at different levels you need
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Nadine Vogel: better communication skills.
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Nadine Vogel: Absolutely.
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Nadine Vogel: This is fabulous.
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David Quilleon: Absolutely. And it's so great too,
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David Quilleon: for our participants to really be able to educate others, uh,
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David Quilleon: and talk about their disability. You know?
Nadine Vogel: Yeah.
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David Quilleon: There's sometimes that people are scared or nervous about asking someone with a
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David Quilleon: disability about what their life looks like or, um, how they,
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David Quilleon: they can best be supported. And,
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David Quilleon: and those are conversations that we help our participants have with other people
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David Quilleon: to help, hopefully. Now, I was meeting with, um, a school the other day,
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David Quilleon: and I, one of the parents, she's a,
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David Quilleon: a new parent with a child with autism, and she said, you know,
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David Quilleon: she went her whole life having never met a person with autism and is now a mom,
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David Quilleon: you know, and so,
Nadine Vogel: right.
David Quilleon: She thinks, you know,
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David Quilleon: she thought it would've been so beneficial if in school she had, you know,
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David Quilleon: had a program like Best Buddies or had heard about Best Buddies.
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David Quilleon: And so I think that's also just important to remember that anyone, you know,
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David Quilleon: can have an experience, you know, with a, with a disability, with a person,
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David Quilleon: with a disability, and, um, giving them,
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David Quilleon: giving people the opportunity to have that voice and share and educate people is
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David Quilleon: really powerful.
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Nadine Vogel: Yeah. And, and again, I'm gonna go back to the workplace, you know,
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Nadine Vogel: cause that's where my head is always right, is, you know,
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Nadine Vogel: if someone with an intellectual or a developmental disability goes into a
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Nadine Vogel: position and they need an accommodation to be able to
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Nadine Vogel: articulate the accommodation they need,
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Nadine Vogel: how it relates to that essential job function, you know,
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Nadine Vogel: to be able to do that is really important because companies
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Nadine Vogel: just assume that if someone needs an accommodation, they know how to ask for it.
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Nadine Vogel: They know what it is, and they're just waiting for you to do that.
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Nadine Vogel: So if the person doesn't
David Quilleon: Yeah.
Nadine Vogel: Then there's a struggle, right?
David Quilleon: It is.
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Nadine Vogel: And then the person might not be seen as successful because they're not getting
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Nadine Vogel: the support that they need.
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David Quilleon: For sure. No. And that's a reality. So being able to,
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David Quilleon: to coach individuals and help them prepare for those types of experiences
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David Quilleon: is really important.
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Nadine Vogel: Wow. You guys are amazing. I mean, I knew that before,
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Nadine Vogel: but now it's just amazing, you know, cubed. I don't know. Um,
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Nadine Vogel: so let's go to the fourth pillar, which is inclusive living.
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Nadine Vogel: So what do you mean by that?
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David Quilleon: Yes. So we have, um, apartments now in Washington,
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David Quilleon: D-C as well as in Miami.
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David Quilleon: And we have individuals with intellectual disabilities,
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David Quilleon: living with individuals without disabilities.
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David Quilleon: And they're developing a community.
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David Quilleon: They have certain expectations and responsibilities of being a part of that
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David Quilleon: community. They have weekly dinners. Um,
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David Quilleon: they have conversations and they're learning to live together. Uh,
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David Quilleon: they help each other. Um, they give each other insight,
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David Quilleon: certainly for a person with intellectual disability,
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David Quilleon: we're able to help them develop those independent living skills in a really
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David Quilleon: safe setting. And we have a, um,
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David Quilleon: a residential manager that works to support the individuals with intellectual
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David Quilleon: disabilities, helping them, you know, learn to cook, um,
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David Quilleon: learn to clean what that looks like.
Nadine Vogel: I need
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Nadine Vogel: That help, by the way.
David Quilleon: Right.
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David Quilleon: I know. Me too. Right. I was like, we all need this. Um, but that's what,
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David Quilleon: that's what Inclusive Living is all about. And, you know,
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David Quilleon: the options for people with intellectual disabilities in terms of a living
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David Quilleon: space, they're just not that great. Um, you know,
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David Quilleon: and so trying to just add a menu of opportunities to,
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David Quilleon: for people to live in someplace that's really nice. Um,
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David Quilleon: and that's safe and that is fun. And, and our,
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David Quilleon: our real goal is, you know, that they have all of those things.
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David Quilleon: They have great friends, they have a great job.
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David Quilleon: They're seen as a leader in their community,
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David Quilleon: and they have an awesome place to live and call home. I mean, and that,
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David Quilleon: what more could you want? So that's why
Nadine Vogel: No ab
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Nadine Vogel: Absolutely. Absolutely. So how do you, well,
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Nadine Vogel: I guess I have a lot of questions here.
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Nadine Vogel: So how do you find the non-disabled individuals who want to live
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Nadine Vogel: and be part of this? Uh, question one, and question two is, you know, if,
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Nadine Vogel: if someone has an intellectual developmental disability and wants to live in
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Nadine Vogel: this inclusive environment, is it like a, wait,
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Nadine Vogel: I gotta imagine there's a waiting list. I mean, what's, how do you do all this?
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David Quilleon: Well, you know, thankfully we don't have a waiting list. But I mean,
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David Quilleon: we have an opening actually right now in our Miami building for person
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David Quilleon: intellectual disabilities to live, to live there. So they just need to,
381
00:21:26.240 --> 00:21:30.080
David Quilleon: to reach out to us and, and we can be able to talk to them. But, um,
382
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David Quilleon: our model at this point is being super close to a university at a,
383
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David Quilleon: a college setting, uh, and identifying college students to be able,
384
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David Quilleon: that wanna live in this type of environment.
Nadine Vogel: Mm-hmm.
David Quilleon: And, um, be part of,
385
00:21:42.720 --> 00:21:45.440
David Quilleon: you know, this inclusive community. And, um,
386
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David Quilleon: and we just share the opportunity and people can see the space,
387
00:21:49.030 --> 00:21:52.240
David Quilleon: they can meet some of the other residents and, you know, they have to agree,
388
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David Quilleon: you know,
389
00:21:52.880 --> 00:21:56.280
David Quilleon: a big piece of this is committing that they're gonna commit to that weekly
390
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David Quilleon: dinner, you know, that they're gonna be a part of that.
391
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David Quilleon: Cause it's only as good as what you offer. You know, what you do.
Nadine Vogel: Absolutely.
392
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Nadine Vogel: Absolutely.
393
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David Quilleon: So, um, and that's for both individuals, you know, that's for,
394
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David Quilleon: for everyone that's a part of, of the program. And the,
395
00:22:08.740 --> 00:22:09.920
David Quilleon: the residents get together,
396
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David Quilleon: they decide what kinds of social things they wanna do.
397
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David Quilleon: We had some residents in Washington DC that all went to go see Hamilton. We had,
398
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David Quilleon: they also decided they wanted to venture off and try some new different types of
399
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David Quilleon: ethnicity foods, and so they went to an Indian restaurant.
400
00:22:24.500 --> 00:22:26.280
David Quilleon: So I just love that they're, you know,
401
00:22:26.280 --> 00:22:28.640
David Quilleon: coming up with those schedules and everybody's, you know,
402
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David Quilleon: identifying what things that they wanna try and
Nadine Vogel: Right.
David Quilleon: And, and do so
403
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Nadine Vogel: Well, and I would think, I mean, for, for the college students that,
404
00:22:36.280 --> 00:22:39.400
Nadine Vogel: that you get involved, you know, it reminds me of, um,
405
00:22:39.590 --> 00:22:43.280
Nadine Vogel: what do they call the RAs, the resident assistants in the dorms, you know?
David Quilleon: Yeah.
406
00:22:43.280 --> 00:22:47.760
David Quilleon: Yeah.
Nadine Vogel: But, but this is actually better. It sounds better than me.
407
00:22:47.760 --> 00:22:51.520
David Quilleon: It is. Well, it's more fun.
Nadine Vogel: Um, yeah.
David Quilleon: Probably a lot less stressful. Cause you know,
408
00:22:52.400 --> 00:22:56.440
Nadine Vogel: I Yes, yes. I would think so. I, my, if I recall my days, yes.
409
00:22:58.060 --> 00:22:59.920
Nadine Vogel: And, and the other thing is, well, I think it's a,
410
00:22:59.920 --> 00:23:02.440
Nadine Vogel: an amazing opportunity probably for all college students,
411
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Nadine Vogel: for a student who is looking to become maybe a special education teacher or
412
00:23:07.840 --> 00:23:12.280
Nadine Vogel: a physical therapist or someone in that field.
David Quilleon: Yes.
Nadine Vogel: This is all this, I mean,
413
00:23:12.280 --> 00:23:15.920
Nadine Vogel: this gives them, you know, practical experience and,
414
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Nadine Vogel: and getting to use their skills as they're, as they're developing them,
415
00:23:18.880 --> 00:23:20.000
Nadine Vogel: which is amazing also.
416
00:23:20.290 --> 00:23:22.600
David Quilleon: Absolutely. I mean, it's, it's so true. I mean,
417
00:23:22.600 --> 00:23:24.840
David Quilleon: and I think it's been cool for us to see, like,
418
00:23:24.920 --> 00:23:29.000
David Quilleon: I know one of our residents in Washington DC is in law school, so what a great,
419
00:23:29.300 --> 00:23:33.440
David Quilleon: you know, like, so awesome that she's living in this environment. Yeah. And,
420
00:23:33.440 --> 00:23:37.760
David Quilleon: you know, she wants to move into disability law. So what a great,
421
00:23:38.120 --> 00:23:40.240
Nadine Vogel: fabulous.
David Quilleon: opportunity to see firsthand, you know,
422
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David Quilleon: the experience of a person with I D D, what that looks like.
Nadine Vogel: Yeah.
David Quilleon: Um,
423
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David Quilleon: and to be able to then advocate for it later and help.
424
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Nadine Vogel: Right. No, you know,
David Quilleon: it's really powerful.
Nadine Vogel: You know, it's so important. We, um,
425
00:23:52.740 --> 00:23:57.200
Nadine Vogel: we had, we did experiential learning, and we always tell folks, you know,
426
00:23:57.200 --> 00:23:59.400
Nadine Vogel: if you take on a role for a day or a half a day,
427
00:23:59.400 --> 00:24:01.160
Nadine Vogel: it's not the same as living with a disability.
428
00:24:01.180 --> 00:24:05.640
Nadine Vogel: It just gives you a little window in this is almost like that next window.
429
00:24:05.640 --> 00:24:10.040
Nadine Vogel: Right. Because this is truly experiential where you're not trying to, you know,
430
00:24:10.130 --> 00:24:11.760
Nadine Vogel: adopt a disability, if you will,
431
00:24:11.860 --> 00:24:16.210
Nadine Vogel: but you're getting to see firsthand what people with, you know, um,
432
00:24:16.210 --> 00:24:20.730
Nadine Vogel: intellectual or developmental disabilities are experiencing.
David Quilleon: Exactly.
Nadine Vogel: I mean,
433
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Nadine Vogel: that's amazing.
David Quilleon: It is.
Nadine Vogel: So, is is there a plan to expand this beyond DC and Miami
434
00:24:25.750 --> 00:24:27.610
David Quilleon: Yes. Yes. So we wanna expand.
435
00:24:27.660 --> 00:24:30.970
David Quilleon: We've been looking at new markets and new colleges and just, you know,
436
00:24:30.970 --> 00:24:33.890
David Quilleon: we reach out to a lot of different universities. You know,
437
00:24:34.070 --> 00:24:37.610
David Quilleon: so many people are talking a lot about, you know, D-E-I initiatives.
438
00:24:37.910 --> 00:24:42.410
David Quilleon: And it's a way for us to say, you know, let's, if you really wanna do that in,
439
00:24:42.430 --> 00:24:43.650
David Quilleon: in your college environment,
440
00:24:44.140 --> 00:24:47.930
David Quilleon: let's talk about how you can engage people with intellectual disabilities on
441
00:24:47.930 --> 00:24:52.410
David Quilleon: your campus and having them live among your students and with your students.
442
00:24:52.870 --> 00:24:57.210
David Quilleon: And, you know, again, creating the true idea of what inclusion,
443
00:24:57.710 --> 00:24:58.080
David Quilleon: you know,
444
00:24:58.080 --> 00:25:02.130
David Quilleon: must look like for everybody to be able to learn and feel safe and celebrate
445
00:25:02.130 --> 00:25:02.963
David Quilleon: their abilities.
446
00:25:03.240 --> 00:25:08.210
Nadine Vogel: Yeah. Wow. Huh, I'm so excited. So I wanna ask, this is not,
447
00:25:08.210 --> 00:25:10.090
Nadine Vogel: it's one question, but actually there's probably a lot of answers.
448
00:25:10.510 --> 00:25:13.090
Nadine Vogel: How do people get involved with Best Buddies? And when I say that,
449
00:25:13.090 --> 00:25:16.490
Nadine Vogel: it's like people who wanted students who wanna be involved with the inclusive
450
00:25:16.770 --> 00:25:19.450
Nadine Vogel: learning, the schools that wanna get involved. Like, I mean,
451
00:25:19.450 --> 00:25:22.410
Nadine Vogel: there's so many different constituencies, maybe people that just wanna donate.
452
00:25:22.590 --> 00:25:24.770
David Quilleon: Yes.
Nadine Vogel: So tell us how folks can get involved.
453
00:25:25.110 --> 00:25:27.370
David Quilleon: Yes. Cool. So, I mean, we are,
454
00:25:27.750 --> 00:25:30.170
David Quilleon: you can call us on the phone at 1-800-89-BUDDY (1-800-892-8339).
455
00:25:30.510 --> 00:25:34.770
David Quilleon: So you do that old school, you can email us info@bestbuddies.org.
456
00:25:34.770 --> 00:25:38.130
David Quilleon: You can visit our website at www.bestbuddies.org.
457
00:25:38.190 --> 00:25:40.770
David Quilleon: can visit our social media channels on Instagram.
458
00:25:41.110 --> 00:25:45.090
David Quilleon: All of our state offices have Instagram and Facebook handles,
459
00:25:45.110 --> 00:25:48.370
David Quilleon: so you can reach us there. Um, certainly I'm on LinkedIn,
460
00:25:48.510 --> 00:25:53.010
David Quilleon: all of our staff are on LinkedIn. So we have, um, those connections. So really,
461
00:25:53.470 --> 00:25:54.930
David Quilleon: um, anyone who's interested,
462
00:25:55.130 --> 00:25:58.850
David Quilleon: if you wanna hire somebody from one of our programs or you want to connect and,
463
00:25:59.150 --> 00:26:02.730
David Quilleon: and have one of your children start a Best Buddies chapter at their school,
464
00:26:03.030 --> 00:26:05.610
David Quilleon: you know, we would love to be able to hear from you and help support you.
465
00:26:05.610 --> 00:26:08.610
David Quilleon: If you wanna be on one of our advisory boards, if you wanna donate,
466
00:26:08.720 --> 00:26:12.810
David Quilleon: just best buddies.org all just visit us there and
Nadine Vogel: anywhere
David Quilleon: you connect and see
467
00:26:12.810 --> 00:26:17.370
David Quilleon: the whole breadth of what we're doing, and we can find a way to engage you.
468
00:26:17.510 --> 00:26:20.010
David Quilleon: We have our Buddies program that, you know, if you,
469
00:26:20.070 --> 00:26:23.970
David Quilleon: if you don't wanna meet somebody right. Direct face-to-face, we can do virtual.
470
00:26:24.230 --> 00:26:26.370
David Quilleon: So we have, we have something for everyone.
471
00:26:26.480 --> 00:26:30.010
David Quilleon: Just reach out and we'll find a way for you to say yes to something.
472
00:26:30.010 --> 00:26:33.930
Nadine Vogel: Right. Right. There's, nobody can walk away from Best Buddies and say,
473
00:26:34.050 --> 00:26:35.450
Nadine Vogel: I just couldn't find something from me.
474
00:26:36.280 --> 00:26:40.410
David Quilleon: Exactly. Right. And we have walks, like they wanna walk, we have Best Buddies,
475
00:26:40.410 --> 00:26:43.520
David Quilleon: friendship walks, so there's something for everyone.
476
00:26:43.930 --> 00:26:47.000
Nadine Vogel: Absolutely. So when you think about the next,
477
00:26:47.690 --> 00:26:51.930
Nadine Vogel: let's say three to five years, what, what does it look like for,
478
00:26:51.950 --> 00:26:52.783
Nadine Vogel: for Best Buddies?
479
00:26:53.990 --> 00:26:55.150
David Quilleon: I, I think for Best Buddies,
480
00:26:55.150 --> 00:26:59.110
David Quilleon: it looks like continuing to press forward with this mission and,
481
00:26:59.210 --> 00:27:03.270
David Quilleon: and helping just our communities understand, uh,
482
00:27:03.270 --> 00:27:07.070
David Quilleon: people with intellectual disabilities and what they want to accomplish out of
483
00:27:07.070 --> 00:27:10.310
David Quilleon: life and how they want to be included. Ok. And, you know,
484
00:27:10.310 --> 00:27:14.310
David Quilleon: continuing to educate people in that regard. Um, I think for me, I mean,
485
00:27:14.310 --> 00:27:18.510
David Quilleon: one of the things that I'm really passionate about lately is I, I have,
486
00:27:18.510 --> 00:27:21.710
David Quilleon: you know, I have two siblings with intellectual disabilities and, um,
487
00:27:21.850 --> 00:27:26.590
David Quilleon: one of my siblings was recently very sick and going through the medical world.
488
00:27:26.590 --> 00:27:31.190
Nadine Vogel: Mm-hmm.
David Quilleon: And so I feel like there's a lot of education that still can happen
489
00:27:31.730 --> 00:27:34.870
David Quilleon: in that regard just to, um, companies, hospitals,
490
00:27:34.930 --> 00:27:39.750
David Quilleon: people that manage hospitals about training our doctors and our nurses and our
491
00:27:39.750 --> 00:27:42.950
David Quilleon: medical personnel about how to interact with people with intellectual
492
00:27:42.950 --> 00:27:45.830
David Quilleon: disabilities. So that's one of the things that we're currently, um,
493
00:27:45.850 --> 00:27:50.270
David Quilleon: I'm currently working with another hospital to develop a training in that
494
00:27:50.270 --> 00:27:52.070
David Quilleon: regard. And I just, I think our,
495
00:27:52.210 --> 00:27:56.350
David Quilleon: our medical personnel are always so focused on fixing things. Nadine.
Nadine Vogel: Yes,
496
00:27:57.170 --> 00:27:57.540
Nadine Vogel: Yes.
497
00:27:57.540 --> 00:28:00.510
Nadine Vogel: Yeah.
David Quilleon: And that's where they should be. But sometimes, you know, that mindset,
498
00:28:01.210 --> 00:28:03.310
David Quilleon: um, you know, you're not gonna fix, uh,
499
00:28:03.570 --> 00:28:07.230
David Quilleon: you're not gonna change someone's diagnosis from, you know, down syndrome or,
500
00:28:07.230 --> 00:28:08.150
David Quilleon: or with autism.
501
00:28:08.450 --> 00:28:12.510
David Quilleon: So helping our medical personnel understand that the best ways to communicate
502
00:28:12.570 --> 00:28:16.590
David Quilleon: and engage is, is gonna be really important for me personally moving forward.
503
00:28:17.380 --> 00:28:19.800
Nadine Vogel: So de definitely follow up with me on that. We, um,
504
00:28:19.800 --> 00:28:24.440
Nadine Vogel: we've actually had some shows focused just on that topic. Um,
505
00:28:24.500 --> 00:28:26.760
Nadine Vogel: my older daughter had been sick last year,
506
00:28:26.820 --> 00:28:30.080
Nadine Vogel: was in the hospital for a few months with different surgeries. And, um,
507
00:28:30.720 --> 00:28:35.640
Nadine Vogel: I was venting. I use this platform to vent. And,
508
00:28:35.960 --> 00:28:40.440
Nadine Vogel: and we have spoken quite a bit about, you know, the training that,
509
00:28:40.710 --> 00:28:44.560
Nadine Vogel: that, you know, the doctors, the nurses, but, but more so the doctors that,
510
00:28:44.560 --> 00:28:49.080
Nadine Vogel: that they need for engaging with individuals with all different
511
00:28:49.080 --> 00:28:53.320
Nadine Vogel: disability types, engaging with their families. Um,
512
00:28:54.360 --> 00:28:56.520
Nadine Vogel: I well, that could be just you and I could tell,
David Quilleon: I know
513
00:28:56.520 --> 00:28:58.600
David Quilleon: That could be a whole nother session. Right.
Nadine Vogel: At least,
514
00:28:58.900 --> 00:28:59.640
Nadine Vogel: At least one.
515
00:28:59.640 --> 00:29:02.560
David Quilleon: But I, I'm really excited about, um, like, so,
516
00:29:02.560 --> 00:29:05.680
David Quilleon: so my brother passed away on September 5th, so not, not that long ago.
517
00:29:05.820 --> 00:29:09.480
David Quilleon: And one of things that we're doing in his memory is we've created a training
518
00:29:09.620 --> 00:29:12.880
David Quilleon: that's called Clinical Considerations for People with intellectual and
519
00:29:12.880 --> 00:29:17.400
David Quilleon: developmental disabilities in, in honor of Ken. And so I just think it's, uh,
520
00:29:17.400 --> 00:29:21.760
David Quilleon: it'll be super helpful to put that piece together and then offer it out to,
521
00:29:22.220 --> 00:29:26.600
David Quilleon: you know, hospitals or
Nadine Vogel: Yes.
David Quilleon: You know, um, senior care providers, whatever,
522
00:29:27.000 --> 00:29:30.560
David Quilleon: whatever it looks like, whoever needs it. Cause I just think it's, um, you know,
523
00:29:30.560 --> 00:29:35.560
David Quilleon: that's a group of people that are highly educated and sometimes that may have
524
00:29:35.560 --> 00:29:37.680
David Quilleon: been missed. You know, just that element of,
525
00:29:37.780 --> 00:29:41.240
David Quilleon: and people with intellectual disabilities are living longer.
Nadine Vogel: Yeah.
David Quilleon: Um,
526
00:29:41.860 --> 00:29:45.840
David Quilleon: and we gotta make sure that everybody's prepared to care for everyone in this
527
00:29:45.840 --> 00:29:46.673
David Quilleon: world, you know?
528
00:29:46.830 --> 00:29:50.280
Nadine Vogel: Yeah. They, you know, the medical community focuses on, I, you know,
529
00:29:50.280 --> 00:29:51.520
Nadine Vogel: I get standard of care,
530
00:29:52.180 --> 00:29:57.040
Nadine Vogel: but they haven't yet grasped disability inclusive
531
00:29:57.760 --> 00:30:01.240
Nadine Vogel: practices as part of Standard of Care.
David Quilleon: Correct.
532
00:30:01.390 --> 00:30:05.920
Nadine Vogel: That this seems to be a, a disconnect. So if we can give of help in any way,
533
00:30:05.920 --> 00:30:10.720
Nadine Vogel: please let me know. This is a
David Quilleon: for sure
Nadine Vogel: pet peeve for me, for sure. Um,
534
00:30:10.900 --> 00:30:14.960
Nadine Vogel: but oh my gosh, we are out of time. David, thank you so much.
535
00:30:14.960 --> 00:30:19.840
Nadine Vogel: Thank you for everything you do for what Best Buddies does globally for you
536
00:30:19.840 --> 00:30:24.480
Nadine Vogel: running the world at Best Buddies.
David Quilleon: Well, thank you, Nadine.
537
00:30:24.480 --> 00:30:27.680
David Quilleon: ANo, we really appreciate you. Thanks for having us. And again,
538
00:30:27.680 --> 00:30:30.880
David Quilleon: if anybody wants to get involved in Best Buddies, please feel free to reach out.
539
00:30:30.880 --> 00:30:32.880
David Quilleon: We'd love to, to get you engaged in our mission.
540
00:30:33.140 --> 00:30:36.080
Nadine Vogel: That's perfect. Thank you. Take care. And for everyone who's listening,
541
00:30:37.110 --> 00:30:40.560
Nadine Vogel: contact Best Buddies. They're like, like your heard David say, there,
542
00:30:40.560 --> 00:30:44.280
Nadine Vogel: there is no reason that you can't get involved. There's something for everyone.
543
00:30:44.940 --> 00:30:45.420
Nadine Vogel: And, um,
544
00:30:45.420 --> 00:30:49.360
Nadine Vogel: we just wanna thank you for joining another episode of Disabled Lives Matter,
545
00:30:49.830 --> 00:30:54.520
Nadine Vogel: because we are more than just a podcast. We are a movement. Thank you everybody.
546
00:30:54.780 --> 00:30:56.740
Nadine Vogel: See you next time. Bye-Bye.
CLOSING COMMENT [Music playing in background.]
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Voice Over: Thank you for listening to this week's episode of Disabled Lives Matter.
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00:31:03.730 --> 00:31:06.750
Voice Over: We look forward to seeing you next Thursday. Have a great week.
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Thursday May 25, 2023
Thursday May 25, 2023
Season 03, Episode 03
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Alisa LaPolt
INTRO [Music playing in background]
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Disabled Lives Matter. Here we go.
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Hello,
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and welcome to this week's episode of the Disabled Lives Matter podcast.
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Let's welcome co-hosts Nadine Vogel and Norma Stanley.
CONTENT
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Nadine Vogel: Hello everyone,
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Nadine Vogel: and welcome to this edition of Disabled Lives Matter.
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Nadine Vogel: We are more than a podcast. We are a movement. And I say we because.
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Nadine Vogel: I'm Nadine Vogel, your co-host joined by my fabulous co-host, Norma Stanley.
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Nadine Vogel: Hey, Norma.
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Norma Stanley: Hello Everybody.
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Nadine Vogel: How is it going?
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Norma Stanley: It's going great. We're having a beautiful day.
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Norma Stanley: I'm hoping you guys are having a beautiful day.
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Nadine Vogel: Absolutely.
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Nadine Vogel: And it's gonna be even more beautiful cause we have this beautiful person that
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Nadine Vogel:we are interviewing today, Alisa LaPolt. So,
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Nadine Vogel: Elisa was born in wiling Wilmington, Delaware. I grew up in East Tennessee. Um,
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Nadine Vogel: she had,
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Nadine Vogel: she spent 15 years as political and policy reporter for a number of news
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Nadine Vogel: outlets.
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Nadine Vogel: Then she opened a Tallahassee Bays lobbying public relations firm
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Nadine Vogel: and specifically advocating for health and, and mental health issues. Um,
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Nadine Vogel: when I first met her, she was the executive director of NAMI Florida,
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Nadine Vogel: the National Alliance on Mental Illness. And, um, many of you are aware of,
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Nadine Vogel: you know, the tragedy, um, at the Marjorie, uh, Stoneman Douglas High School.
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Nadine Vogel: So immediately following that, uh,
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Nadine Vogel: Alisa was named by Governor Rick Scott to his mental health work group.
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Nadine Vogel: She has done so much in this space, um,
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Nadine Vogel: recently returning to her roots in Tennessee and focus on advocacy and
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Nadine Vogel: communications work, um, for the,
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Nadine Vogel: for NAMI in Tennessee and other nonprofits that advocate for suicide,
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Nadine Vogel: substance abuse, um, prevention and, and awareness. Now,
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Nadine Vogel: you heard me say advocating twice, so this is gonna be a theme of today's show.
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Nadine Vogel: So, Alisa, welcome.
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Alisa LaPolt: Well, thanks. Thanks for having me. I appreciate it's good to see you again.
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Nadine Vogel: Yeah, absolutely. So talk to us,
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Nadine Vogel: just because I mentioned advocacy a few times. I know you talk about advocacy,
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Nadine Vogel: I think everybody has very different opinions about what that actually means.
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Nadine Vogel: So I'm wondering if you could give us a perspective, um, when you say advocacy,
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Nadine Vogel: what do you mean?
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Alisa LaPolt: Yeah, uh, that's a great question. To me,
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Alisa LaPolt: advocacy means putting an effort and a voice behind a cause
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Alisa LaPolt: and, um, you know, that that can be speaking up on an issue. And,
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Alisa LaPolt: and those issues can range from maybe having
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Alisa LaPolt: speed bumps in your neighborhood to slow down traffic. Or it can be, um,
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Alisa LaPolt: getting behind, um,
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Alisa LaPolt: maybe an amendment on a bill or constitutional amendment. It,
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Alisa LaPolt: it doesn't have to be a big legislative thing. It can be even
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Alisa LaPolt: promoting better food in your child's cafeteria at
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Alisa LaPolt: school.
Nadine Vogel: Okay.
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Nadine Vogel: Okay. So it's, it,
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Nadine Vogel: it's quite a broad term in terms of what it can relate to.
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Alisa LaPolt: Mm-hmm.
Nadine Vogel: But it's very specific. You are, you know,
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Nadine Vogel: backing something, you are standing up for something.
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Alisa LaPolt: Right, right. And sometimes we hear,
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Alisa LaPolt: we hear the word advocacy with patient advocacy.
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Alisa LaPolt: There are patient advocates too that can, um,
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Alisa LaPolt: advocate for certain treatments, um, so forth.
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Nadine Vogel: So a term, I guess,
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Nadine Vogel: can anyone be an advocate or refer to themselves as an advocate?
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Alisa LaPolt: Definitely, definitely. Um,
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Alisa LaPolt: I encounter a lot of people who think that they have to be a professional
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Alisa LaPolt: lobbyist or professional advocate in order to speak up. And, and you don't. Um,
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Alisa LaPolt: in fact, I find that the, the,
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Alisa LaPolt: just the so-called average citizen has a lot of power and they,
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Alisa LaPolt: they get a lot of street cred because they're the people who have experienced
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Alisa LaPolt: whatever they're trying to change or promote.
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Nadine Vogel: Right. So, so Norma, you and I, you know,
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Nadine Vogel: we have adult daughters with disabilities, so we're their advocates, right? Yes.
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Norma Stanley: Yes.
Nadine Vogel: But, but it's interesting because my older daughter, she refers to herself as,
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Nadine Vogel: you know, she always says she self-advocates.
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Nadine Vogel: And I think that in the disability community in particular,
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Nadine Vogel: that's really important. Um, Alisa,
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Nadine Vogel: I don't know if you have anything you wanna say about that, that self-advocacy?
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Alisa LaPolt: Oh, definitely, definitely. Um, when you're speaking up for yourself,
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Alisa LaPolt: advocating for yourself, um, I find that policymakers,
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Alisa LaPolt: legislators really listen and pay attention to somebody
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Alisa LaPolt: who's a self-advocate as opposed to a, a professional lobbyist.
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Alisa LaPolt: Like for instance, I, I am a professional lobbyist, but, um,
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Alisa LaPolt: because the self-advocate has the lived experience and can explain in his
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Alisa LaPolt: or her own terms with passion with emotion,
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Alisa LaPolt: and that's extremely effective.
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Norma Stanley: Can I ask a question?
Nadine Vogel: Yes, sure.
Norma Stanley: With, with, as a lobbyist,
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Norma Stanley: um, how does that, how does that relate to the advocacy component?
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Norma Stanley: Are you lobbying for the community? Are you lobbying for the company?
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Norma Stanley: And is there a happy medium?
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Alisa LaPolt: Uh, that's a great question. So it depends on who the client is. Um,
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Alisa LaPolt: so like in Tennessee, I have lobbied for the, uh, for NAMI Tennessee,
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Alisa LaPolt: the National Alliance of Mental Illness.
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Alisa LaPolt: So my job is to promote their issues,
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Alisa LaPolt: um, which is generally better access to mental health services in Tennessee.
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Norma Stanley: And you're doing that with the, the, the legislators. Alisa LaPolt: correct.
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Norma Stanley: The people to understand what NAMI stands for and,
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Norma Stanley: and what they're trying to accomplish.
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Alisa LaPolt: Correct. Correct.
Norma Stanley: Okay,
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Norma Stanley: Cool.
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Norma Stanley: And September is, is, um, suicide month or prevention Awareness month.
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Alisa LaPolt: Right, right. And it's also National Recovery Month.
Norma Stanley: Mm-hmm.
Nadine Vogel: So,
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Nadine Vogel: So the timing of of, of all of these things are really important. So, so Norma,
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Nadine Vogel: I I kinda have a question for you, Alisa, together in that, you know,
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Nadine Vogel: for your daughter, for Sierra,
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Nadine Vogel: she sh I don't think she can stand up and advocate for herself. Right?
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Nadine Vogel: Right. So obviously you are her advocate, but then, you know,
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Nadine Vogel: if you are not around, you're, you're on vacation, you're away, you're whatever.
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Nadine Vogel: H how does that all work, Alisa?
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Norma Stanley: Yeah.
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Alisa LaPolt: Um, in terms of patient advocacy,
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Alisa LaPolt: or do you mean like just
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Nadine Vogel: Advocacy in general? You know, it could be, you know,
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Nadine Vogel: she's out and about and just has issues.
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Nadine Vogel: People are bullying her out in the street, or I don't know anything really.
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Alisa LaPolt: Mm-hmm.
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Alisa LaPolt: Um, and, and I don't know the nature of the, um, with her diagnosis.
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Norma Stanley: Well, my daughter has cerebral palsy and she, you know,
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Norma Stanley: she has intellectual and physical disabilities, so she can't talk. Um, and, and,
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Norma Stanley: you know, she, she's had mobility issues and things like that. And so, like I,
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Norma Stanley: you know, my, I have,
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Norma Stanley: of course I have my people who would take care of her if I'm not around.
Alisa LaPolt: Mm-hmm.
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Norma Stanley: But the point is that, you know,
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Norma Stanley: I understand that people with disabilities can vote, you know,
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Norma Stanley: so there's things that they can do,
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Norma Stanley: but it also takes the advocates to make sure things like that are pushed through
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Norma Stanley: for on their behalf.
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Alisa LaPolt: Right. Right. I, I think, um, definitely like in advance of,
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Alisa LaPolt: of you leaving, if, if there is some way that she's able to express,
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Alisa LaPolt: um, when, you know, when she's uncomfortable with something, uh,
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Alisa LaPolt: if there's like some kind of hand gesture, um, or something like,
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Alisa LaPolt: like that, um, some kind of communication
Nadine Vogel: Right.
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Nadine Vogel: I, I just, I just think it's, it's so important. And, and talk to us,
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Nadine Vogel: Alisa, about, maybe you can even give us an example, you know, how,
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Nadine Vogel: how can people actually make a difference with advocacy? I, I, I,
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Nadine Vogel: I've met a lot of people that, that get so frustrated and they feel burnt out.
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Nadine Vogel: Like, I'm always advocating for this cause or for this, you know,
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Nadine Vogel: and they just feel like they're not getting anywhere.
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Alisa LaPolt: Right. And we're actually seeing that in our country.
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Alisa LaPolt: We know we're living in some very, uh, politically polarizing times,
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Alisa LaPolt: and you have a faction of people who have not felt heard,
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Alisa LaPolt: whether you agree with them or not. If you step back and look objectively,
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Alisa LaPolt: there is a large faction of people who have not felt heard.
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Alisa LaPolt: And that's why you're seeing anger, and that's why you're seeing, um,
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Alisa LaPolt: just so much, um, response to what's, what's going on politically.
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Alisa LaPolt: So just that faction of people standing up and giving voice to
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Alisa LaPolt: that anger has already made a huge difference in our country as,
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Alisa LaPolt: you know, how we talk. So,
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Alisa LaPolt: so there's an example of not being heard. So the question is,
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Alisa LaPolt: what happens if we can be heard when, when we are heard, um,
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Alisa LaPolt: we can make a difference. And it helps when we speak in unison,
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Alisa LaPolt: in harmony with others. One person can make a difference for sure.
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Alisa LaPolt: But when we come together and work as a group, you know,
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Alisa LaPolt: more voices mean a a stronger effort
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Nadine Vogel: And, and more voices. I guess I wanna ask,
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Nadine Vogel: that mean organized voices like a NAMI, right? Like, you know,
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Nadine Vogel: an organization, um, or can it just mean, you know,
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Nadine Vogel: a hundred people just lay people get together and, you know, form a group?
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Nadine Vogel: I mean, does it have to be more organized, would you say, officially to,
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Nadine Vogel: to have impact?
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Alisa LaPolt: Um, it, it does not, but it helps if it, is,
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Alisa LaPolt: It
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Alisa LaPolt: It, because there needs to be, um, some effort, some, uh,
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Alisa LaPolt: person to unify people.
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Alisa LaPolt: It's really important to have a unified and clear and consistent message.
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Nadine Vogel: Mm-hmm. Mm-hmm.
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Norma Stanley: And we have that in common. You're a communications professional. And,
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Norma Stanley: and so am I, so, uh,
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Norma Stanley: that helps to be able to make sure that the messages are getting across in
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Norma Stanley: a, in a more cohesive manner, right.
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Norma Stanley: When you have a unified message and everybody's speaking from the same,
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Norma Stanley: or singing from the same hymn as they used to say.
Alisa LaPolt: Right.
Norma Stanley: Um,
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Norma Stanley: and how important is that, let's say, with regards to mental illness?
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Norma Stanley: Because I mean, you're seeing so many examples of,
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Norma Stanley: of people just,
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Norma Stanley: just losing hope and taking themselves out, um
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Alisa LaPolt: Mm-hmm.
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Norma Stanley: You know, and,
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Norma Stanley: and people who are understanding more about what mental illness is
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Norma Stanley: and, and what people are dealing with that they may not be talking about,
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Norma Stanley: that they probably never thought about before because of what we're seeing in
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Norma Stanley: our communities right now.
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Alisa LaPolt: Right. Definitely. Right. It is really, um,
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Alisa LaPolt: upsetting to see the,
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Alisa LaPolt: the number of people who are dying by suicide now. Um, and there's, you know,
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Alisa LaPolt: many reasons for that, including, um, coming out of a pandemic,
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Alisa LaPolt: that's something we've never experienced before. So it's,
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Alisa LaPolt: it's important to speak together with a common voice because when it comes to
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Alisa LaPolt: mental health and mental illness,
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Alisa LaPolt: there are so many issues that we can tackle each year.
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Alisa LaPolt: Um, mental, mental health screenings in schools, for instance,
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Alisa LaPolt: or, uh, getting mental health to inmates. Uh, what about, uh,
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Alisa LaPolt: discharge plans in hospitals after somebody's had a, um,
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Alisa LaPolt: visit to the emergency department for a, uh, psychiatric crisis?
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Alisa LaPolt: So the idea is to get behind streamline,
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Alisa LaPolt: pick one, two, maybe three issues,
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Alisa LaPolt: and come together in a unified voice and all,
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Alisa LaPolt: you know, speak, speak to those issues. So that's what I do with NAMI Tennessee,
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Alisa LaPolt: is I speak to the advocates and,
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Alisa LaPolt: and try to get everybody on the same page so we can all move forward
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Alisa LaPolt: and have a, a unified voice with legislators.
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Nadine Vogel: Great. Well that, and, and I'm glad you brought up Covid too, because I,
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Nadine Vogel: I think that that has certainly contributed to, to some of the things that,
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Nadine Vogel: that we're seeing, unfortunately.
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Nadine Vogel: And today we're interviewing Alisa LaPolt and we're talking about advocacy and
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Nadine Vogel: advocacy specifically as it relates, um,
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Nadine Vogel: to disability and even more so into the mental health arena. So Alisa,
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Nadine Vogel: you know, we talked a lot about advocacy and whether it's organized or not, and,
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Nadine Vogel: and, and impact. I'm wondering if you could give us maybe one or two, you know,
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Nadine Vogel: real life examples everybody cannot, can relate to, um,
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Nadine Vogel: advocacy really took hold and, and was effective. And,
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Nadine Vogel: and maybe what even, you know,
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Nadine Vogel: we could start with from Marjorie Stoneman Douglas, uh, high school.
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Alisa LaPolt: Yes. Yes. Um, you won't may remember the,
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Alisa LaPolt: the shooting took that took place at that high school in Broward County. Um,
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Alisa LaPolt: and it happened when the legislative session was still going on in Tallahassee,
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Alisa LaPolt: Florida.
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Alisa LaPolt: What ended up happening after the tragedy is you saw this incredible
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Alisa LaPolt: movement of young people,
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Alisa LaPolt: of the students who were there that day standing up and said no
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Alisa LaPolt: more. And there were so many politics around that thing.
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Alisa LaPolt: The Broward County Sheriff got wrapped up in it.
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Alisa LaPolt: Um, people who, he ended up, you know,
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Alisa LaPolt: the target of an ouster and, and, and the,
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Alisa LaPolt: the kids band together and said,
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Alisa LaPolt: we wanna tackle this issue of gun control.
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Alisa LaPolt: And you saw then march on Washington DC you saw them speaking at
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Alisa LaPolt: Congress and, um, very impressive.
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Alisa LaPolt: A very impressive movement. Movement there.
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Alisa LaPolt: And then what happened from my standpoint at NAMI Florida when I was executive
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Alisa LaPolt: director, sometimes it takes chaos to make change and or tragedy.
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Alisa LaPolt: And, and that's unfortunate, but that's the way it works. So, at NAMI Florida,
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Alisa LaPolt: we were able to turn the conversation around what can we do in schools
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Alisa LaPolt: about mental health?
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Alisa LaPolt: And we helped pass legislation that required Florida public schools to offer
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Alisa LaPolt: mental health education to students.
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Nadine Vogel: That's great. That's great. And, and, and so important, and, you know, I think,
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Nadine Vogel: I mean, certainly all areas, all areas of life could use advocates. Right. And,
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Nadine Vogel: and specifically disability.
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Nadine Vogel: But I think for those that are experiencing mental health issues
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Nadine Vogel: and or are, you know, non-verbal, not, not have,
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Nadine Vogel: don't have an ability to communicate,
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Nadine Vogel: I think have the need the advocates the most. Because if someone is,
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Nadine Vogel: in mental health crisis,
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Nadine Vogel: how could we possibly expect them to, you know,
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Nadine Vogel: advocate for themselves? And I think in the school situation,
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Nadine Vogel: what's even more amazing is that you did have these students that were
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Nadine Vogel: experiencing a crisis. They were, and somehow they banded together and did that,
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Nadine Vogel: which is just
Alisa LaPolt: mm-hmm.
Nadine Vogel: It makes it that much more amazing. Right?
Norma Stanley: Absolutely.
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Alisa LaPolt: Definitely.
Nadine Vogel: Oh gosh, I, I remember that. I, I,
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Nadine Vogel: I just remember like being so tuned in to what they were doing and what
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Nadine Vogel: they were saying and thinking, oh my gosh, how are they accomplishing this?
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Alisa LaPolt: Right.
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Alisa LaPolt: Yeah, it was, it was amazing. It was amazing.
Norma Stanley: Thank you.
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Nadine Vogel: And do you have any, another example you wanna share?
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Alisa LaPolt: Yeah, there's one personal one that happened in Florida at the time.
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Alisa LaPolt: I was lobbying for an organization of
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Alisa LaPolt: pediatric day treatment providers for medically fragile children.
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Alisa LaPolt: So these are children that needed 24 hour care, whether it was a, a trach,
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Alisa LaPolt: you know, oxygen cause they were medically fragile. So think of a, uh,
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Alisa LaPolt: medical childcare center while the parents attend work or school.
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Alisa LaPolt: And, um,
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Alisa LaPolt: we were trying to get them some more money from the state Medicaid program and
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Alisa LaPolt: we were trying to show them it's cheaper to put these children in
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Alisa LaPolt: a, uh, medical day treatment center than keeping 'em in the,
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Alisa LaPolt: the NICU or the PICU.
Nadine Vogel: Mm-hmm.
Norma Stanley: Right, right.
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Alisa LaPolt: so there was the money argument, you know,
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Alisa LaPolt: we saved the state Medicaid money,
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Alisa LaPolt: but it was the moment when I put a personal face to it that
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Alisa LaPolt: made the difference. And there was a parent that came up from South Florida to,
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Alisa LaPolt: to, uh, maybe it was Orlando,
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Alisa LaPolt: to Tallahassee and brought her little boy Zeke.
Norma Stanley: Mm-hmm.
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Alisa LaPolt: And Zeke was at this point about four years old,
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Alisa LaPolt: and, um,
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Alisa LaPolt: had been in one of these day treatment centers and still had the scar from where
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Alisa LaPolt: his trach was, um, had,
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Alisa LaPolt: been placed for so long while he got treatment at the center.
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Alisa LaPolt: And we were meeting with the chair of the, uh, Senate healthcare,
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Alisa LaPolt: basically the healthcare budget committee. And he walked up to the,
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Alisa LaPolt: the, the chairman and said, look, I'm better because of this.
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Alisa LaPolt: And he pointed to his scar on where the trach had been.
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Alisa LaPolt: And the chairman looked at me and said, how much do you need?
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Nadine Vogel: Well, you know, you know what's funny about that with, funny about that example.
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Nadine Vogel: So, um, when my older daughter was younger, she needed round the clock care,
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Nadine Vogel: home nursing and all of this stuff you're talking about.
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Nadine Vogel: And we had case management through insurance and you know, with the insurance,
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Nadine Vogel: they always wanted to pull the insurance. She doesn't need it anymore,
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Nadine Vogel: it's too much money, whatever.
Alisa LaPolt: Mm-hmm.
Nadine Vogel: And to your point,
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Nadine Vogel: I would send the case manager photos of, of my daughter,
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Nadine Vogel: and I would put little notes that would come from her voice, basically,
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Nadine Vogel: you know, thank you so much for getting me this equipment. I can stand now.
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Nadine Vogel: Look at me. Right. And we would do stuff like that all the time. So I, I,
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Nadine Vogel: you know, I hadn't thought about that for years, but when you said that,
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Nadine Vogel: it reminded me about you. Right. We have to put the voice because,
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Nadine Vogel: and the face and the experience,
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Nadine Vogel: because if someone hasn't personally had that experience,
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Nadine Vogel: it's hard for them sometimes to relate to,
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Nadine Vogel: to get it in the way we need them to get it.
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Alisa LaPolt: Exactly. E exactly. Um, for instance, one thing we do at NAMI is, um,
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Alisa LaPolt: we teach people how to negotiate with their insurance companies.
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Nadine Vogel: Oh yes.
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Alisa LaPolt: Yeah. And one thing to advocate, one way to advocate is to say like,
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Alisa LaPolt: here is a medication that has worked for me, here were my symptoms.
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Alisa LaPolt: Here is how it, it was, um,
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Alisa LaPolt: the medication helped them and here's what I'm able to do now.
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Nadine Vogel: Right. Exactly. So here's what's really interesting because,
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Nadine Vogel: so you talk about training, right. Training folks to do this.
Alisa LaPolt: Mm-hmm.
Nadine Vogel: Um,
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Nadine Vogel: you know, and I think when I did this back for my daughter, it was just,
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Nadine Vogel: I had no idea what I was doing. I just did it. Right. So how do we
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Nadine Vogel: train
Alisa LaPolt: mm-hmm.
Nadine Vogel: Guide children, you know,
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Nadine Vogel: people with disabilities, whether it's mental health or other,
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Nadine Vogel: their parents on how to be advocates.
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Nadine Vogel: Because I would say, and, and Norma, you know, you can weigh in here as well,
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Nadine Vogel: you know, as, as the special needs parents.
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Nadine Vogel: I think we just do what our gut tells us to do. Right.
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Nadine Vogel: It's mom.
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Norma Stanley: Yeah. And, and yeah. And, and actually, you know, whether it's any, anybody,
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Norma Stanley: to tell you the truth today, you have to me,
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Norma Stanley: you have to advocate for yourself in a medical situation because a lot of these
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Norma Stanley: doctors and nurses,
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Norma Stanley: they're not paying attention to some of the things that are in those charts.
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Norma Stanley: And if you don't know how to say, I can't get that medicine or whatever it is,
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Norma Stanley: and that they make sure that they pay attention
Nadine Vogel: right.
Norma Stanley: To what's in there,
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Norma Stanley: all kinds of disasters can happen.
Nadine Vogel: Well, so
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Norma Stanley: Once you
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Norma Stanley:Leave that space.
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Nadine Vogel: Well, you know, and my daughter was in the hospital. I, I moved in.
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Nadine Vogel: I I I didn't leave until she left as happening.
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Nadine Vogel: But at least I'm curious, are there training programs,
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Nadine Vogel: are there formal programs out there to train parents like us to be advocates
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Nadine Vogel: either for ourselves or our children?
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Alisa LaPolt: Yes. Many organizations such as NAMI offer training, in fact,
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Alisa LaPolt: that's what I do at NAMI Tennessee. It's one of my favorite things to do.
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Alisa LaPolt: Like I'll do that each year before our legislative session. And, um,
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Alisa LaPolt: so if they wanna Google like advocacy trainings, um,
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Alisa LaPolt: usually the organization, it's for a, a cause, um,
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Alisa LaPolt: maybe better race relations or, um, you know,
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Alisa LaPolt: alcohol and substance abuse services.
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Alisa LaPolt: So the training is usually tailored around whatever subject matter is being
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Alisa LaPolt: promoted.
Nadine Vogel: Okay.
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Alisa LaPolt: But I would say that any time that you are speaking from your
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Alisa LaPolt: heart, you can't go wrong. And like you said,
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Alisa LaPolt: you trusted your gut and you went for it.
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Alisa LaPolt: And that is the best way to be an advocate.
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Nadine Vogel: Mm-hmm.
Alisa LaPolt: So
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Alisa LaPolt: There's no training with that. You, you know, your heart,
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Alisa LaPolt: especially when it comes to your kids.
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Nadine Vogel: Right. But, you know, it's, but it's interesting and I find this more so if,
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Nadine Vogel: let's say I'll meet someone,
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Nadine Vogel: or especially parent and English is not their first language.
Alisa LaPolt: Mm-hmm.
Nadine Vogel: Right?
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Nadine Vogel: And so they're already feeling like they're, you know, in a,
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Nadine Vogel: in a backseat they're not getting listened to.
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Nadine Vogel: And so they feel like there's no way they can be an advocate because they don't
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Nadine Vogel: trust their gut. Cause they're saying, I don't even trust my,
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Nadine Vogel: my ability to speak in English.
Alisa LaPolt: Mm-hmm.
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Nadine Vogel: They're not listening in this other language. Um,
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Nadine Vogel: so I just find that you add these layers of complication for individuals and
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Nadine Vogel: becoming the advocate.
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Alisa LaPolt: Yeah. Yeah. Communication barriers can certainly, um, hinder that effort.
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Alisa LaPolt: I think in those situations. It's good to have a spokesperson,
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Alisa LaPolt: someone to speak for you.
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Nadine Vogel: Right. Great. Yeah. Now with NAMI,
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Nadine Vogel: so do we have a clone of you in every state?
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Alisa LaPolt: And so there are advocacy directors in many of the states. Um,
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Alisa LaPolt: but you know,
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Alisa LaPolt: I'm lucky cause I do have a background in journalism recording and getting the
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Alisa LaPolt: story out so that Yeah. I really like doing that.
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Nadine Vogel: Yeah. So, so I guess my question is, you know, if we,
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Nadine Vogel: if someone who's listening to this, um,
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Nadine Vogel: either things for themselves or maybe for their child or family member,
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Nadine Vogel: wow, this is something i, I really realize I need to do. Um,
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Nadine Vogel: and let's say it's around mental health.
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Nadine Vogel: Should they just contact the local NAMI office? Is that the best way to do it?
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Nadine Vogel: Or,
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Alisa LaPolt: Um, sure. This one way, uh, we have a really great national website.
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It's NAMI.ORG, nami.org. It's
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Nadine Vogel: Oh, okay. That's easy
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Alisa LaPolt: National Alliance and mental illness nami.org. And then through there you,
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Alisa LaPolt: it'll be, uh, you can get directed to your state and uh,
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Alisa LaPolt: get the content information from there.
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Alisa LaPolt: And it also has a lot of information about advocacy and different mental health
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Alisa LaPolt: conditions and stigma, which is a big thing. Of course. Norma Stanley: Yes.
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Nadine Vogel: Well, acutally so I'm, I'm glad you said that. Uh, say that,
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Nadine Vogel: you know, look, there's a lot of stigma around disabilities.
Alisa LaPolt: Sure.
Nadine Vogel: Um,
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Nadine Vogel: I find that the more stigma, the,
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Nadine Vogel: the more you have to advocate, right. Because folks are not understanding,
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Nadine Vogel: would you say that mental illness,
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Nadine Vogel: mental health issues are more stigmatized or,
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Nadine Vogel: or than other disability types? And if so, why?
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Alisa LaPolt: I think it's a different type of stigma. Um, because
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Alisa LaPolt: it's not seen as, as opposed to a, like a physical disability. Right.
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Alisa LaPolt: Um, it comes out, it manifests as behavior.
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Alisa LaPolt: So the person is labeled as bad if they're having a mental health crisis. Um,
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Alisa LaPolt: and that's a lot of times where law enforcement gets involved because the
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Alisa LaPolt: individual crisis might be, um,
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Alisa LaPolt: you know, making a, uh, like a public disturbance for instance.
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Alisa LaPolt: So there's that element of, um, being labeled as a criminal.
Nadine Vogel: Right.
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Alisa LaPolt: So, you know, there, there is that as well.
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Nadine Vogel: So I'm gonna ask them another question cuz you brought up law enforcement, um,
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Nadine Vogel: how get law enforcement to become advocates,
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Nadine Vogel: like really, like, like they need to be trained
Alisa LaPolt: Yes.
Nadine Vogel: And, and,
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Nadine Vogel: and be able to be advocates. And I know there's been a lot of issues with that.
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Nadine Vogel: So how do we, how do we get on that bandwagon?
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Alisa LaPolt: Well, there's some really exciting things going on there. Um,
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Alisa LaPolt: with NAMI in, uh, for instance,
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Alisa LaPolt: NAMI has been very involved with police,
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Alisa LaPolt: a police training program called Crisis Intervention Teams. Oh.
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Alisa LaPolt: And so there are models, in fact, um,
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Alisa LaPolt: I worked with my hometown police chief in East Tennessee where I
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Alisa LaPolt: grew up and brought this training,
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Alisa LaPolt: this C-I-T training to my hometown.
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Alisa LaPolt: And now every officer in my hometown is,
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Alisa LaPolt: is trained in how to respond to a mental health crisis. And that,
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Alisa LaPolt: that actually came from, I mentioned from a tragedy. Um, my,
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Alisa LaPolt: my own nephew died by suicide. And, um,
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Alisa LaPolt: that's why I moved back to Tennessee. And, and my mission has been to, to, uh,
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Alisa LaPolt: make changes wherever I can. So yes, so our police training programs,
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Alisa LaPolt: this is Nat National and they're also police trainings
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Alisa LaPolt: for how to respond to an individual with Alzheimer's
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Nadine Vogel: Mm-hmm.
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Alisa LaPolt: And autism.
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Nadine Vogel: Excellent. Excellent. Because that, that scares me that Yeah. You know,
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Nadine Vogel: that really scares me because, you know, mental health or autism,
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Nadine Vogel: even Alzheimer's, right? They're all invisible disabilities. Um, many of the,
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Nadine Vogel: especially on the mental health side is, you know, thoughts and feelings.
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Nadine Vogel: We can't see someone's thoughts and feelings and why they're acting this way
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Nadine Vogel: and, and that, that scares me quite a bit. Mm-hmm.
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Nadine Vogel: So I'm really glad to hear that that's also being done.
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Nadine Vogel: I cannot believe that our time is up.
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Nadine Vogel: That was the fastest session I've ever seen. But,
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Nadine Vogel: uh, Norma, anything else you wanted to ask before we, uh,
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Norma Stanley: No, I think she shared a lot.
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Norma Stanley: I would like to learn more about those crisis intervention teams and how they
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Norma Stanley: are actually, uh, being affective in, um, communities of color.
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Nadine Vogel: Oh, ooh. That would be interesting
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Nadine Vogel: To know more about that.
Alisa LaPolt: Yes.
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Nadine Vogel: Alisa,
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Nadine Vogel: Anything you wanna say on that?
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Alisa LaPolt: Uh, yes, actually, the, the c the C-I-T program was,
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Alisa LaPolt: uh, born in Memphis,
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Alisa LaPolt: Tennessee as the result of a police shooting of a person of color.
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Alisa LaPolt: And so yes, definitely that is something that is discussed for sure.
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Nadine Vogel: Is
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Nadine Vogel: There any place folks can go to find out more about that training?
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Alisa LaPolt: Um, yeah, if you Google, I think it's, um, uh, cit.org.
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Nadine Vogel: Okay.
Alisa LaPolt: I'm not sure the website, but, um, there's so much information on there.
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Norma Stanley: Um mm-hmm.
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Alisa LaPolt: And what NAMI does is helps communities engage law enforcement and
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Alisa LaPolt: get them on board with this C-I-T So it's a community thing.
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Nadine Vogel: Wow. That's, that's really fabulous. What a great way to close out this session.
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Nadine Vogel: So Alisa, thank you so much for joining us.
Norma Stanley: Yes, thank you.
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Nadine Vogel: Keeps fighting the fight and doing all the work you're doing. Uh,
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Nadine Vogel: all the power to you, babe.
Alisa LaPolt: Thanks.
Nadine Vogel: And for our listeners,
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Nadine Vogel: thank you once again for joining Norma and me Nadine,
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Nadine Vogel: and we'll see you on another episode of Disabled Lives Matter more
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Nadine Vogel: than a podcast. It's a movement.
Norma Stanley: Movement.
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Nadine Vogel: Take care everybody
Norma Stanley: be blessed.
Alisa LaPolt: Bye bye.
CLOSING COMMENT [Music playing in background.]
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Thank you for listening to this week's episode of Disabled Lives Matter.
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We look forward to seeing you next Thursday. Have a great week.
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Thursday Apr 06, 2023
Thursday Apr 06, 2023
Season 03, Episode 02
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Chai Feldblum
Intro: [Music playing in background] Disabled Lives Matter... here we go!
Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.
Nadine Vogel: Hello everyone and welcome to today's episode of disabled lives matter we are more than a podcast we are a movement, and I am joined, I am nadine vogel you're a Co host joined by my lovely co host norma Stanley hey norma.
NORMA STANLEY: Hey everybody.
Nadine Vogel: Well, you are guys are just in for a treat an absolute treat so I have asked a very I was gonna say an old friend, but that makes us sound like we're old so a very dear friend.
Nadine Vogel: to join today's podcast Chai Feldblum she is, Chai, is a long time, civil rights advocate and scholar she played a leading role in drafting and negotiating the Americans with Disabilities Act of 1990.
Nadine Vogel: She has she played a role in drafting the employment non discrimination act, she has worked on just so many different things, relative to disability and sexual orientation.
Nadine Vogel: law professor georgetown law, she served as Commissioner of the employment, equal employment opportunity E-E-O-C from 2010 to 2019.
Nadine Vogel: I actually think she's three people in her tiny little body, because i'm not sure how one person does all of this.
Nadine Vogel: Most recently, she became a freelance civil rights advocate she has oversees legislative and regulatory work regarding civil rights, particularly for LGBTQ people and people with disabilities and women.
Nadine Vogel: Now this is really important we're going to come back and talk about this a little bit she also serves as the vice, Chair of the AbilityOne Commission, which is a federal agency devoted to the employment of people with significant disabilities Chai, thank you for joining us.
Chai Feldblum: I am so happy to be here and, as you said, it's more than a podcast it's a movement and hey i'm all about that.
Nadine Vogel: Absolutely, so you know let's just let's do this let's start with what everybody's fairly familiar with the A-D-A Americans with Disabilities Act.
Nadine Vogel: right we just had its 32nd anniversary, which is just so cool I had my I had my daughter with me at the White House for that, I think I saw you at the 30th anniversary.
Nadine Vogel: And she was just turning 30 and she just didn't understand how A-D-A was not there before that, right, and it's been fabulous, but I think is fabulous is it's been some things that are missing. So could you talk a little bit about that with us.
Chai Feldblum: Sure, so the A-D-A absolutely was revolutionary and fantastic and it's sort of hard to imagine the movement without it.
Chai Feldblum: Now there are limitations which, as you noted which talk about so let's just think first about what it did do.
Nadine Vogel: Okay.
Chai Feldblum: after, you know, after a lot of other civil rights bills had been passed, saying that private employers cannot discriminate on various bases.
Chai Feldblum: We didn't have a civil rights law, that said that private employers, you know not entities, like a federal funds but private employers could not discriminate based on disability.
Chai Feldblum: that's what we got in the A-D-A. we also got because we put it in there, specifically that you have to provide reasonable accommodations to people who identify their disability.
Chai Feldblum: And note elements that they might need. a change in a process a change in a rule an auxiliary device right, something they might need in order to be qualified to do the job you've hired them for.
Chai Feldblum: Both huge things, however, it all depends on proving discrimination.
Chai Feldblum: So if you have been at a job and then you become disabled you know now you're using a wheelchair or now you have anxiety disorder or whatever it is.
Chai Feldblum: And you don't are you are to get fired or you don't get a promotion, I mean it's a little bit easier, not easy but easier to prove that discrimination.
Chai Feldblum: As opposed to you use a wheelchair, you know you're blind, you're deaf, you're anything with the manifest disability or you had bipolar disorder and you were not employed for five years okay and they're asking you back, but.
Chai Feldblum: If it's a manifest disability, let me tell you, people will figure out what not to hire you and you will never be able to prove it was because of your disability, so the A-D-A is essential.
Chai Feldblum: But it's a floor, not a ceiling, but so and in terms of the other piece A-D-A did, is it created it created, but in but embedded in our culture that people with disabilities shouldn't be pitied.
Nadine Vogel: right.
NORMA STANLEY: right.
Chai Feldblum: it's about civil rights.
Nadine Vogel: Exactly.
Chai Feldblum: It's about being treated as an equal member of society and that you should not have to hide the disability, you know how all of us in the Community would like to stop with the ability stuff you know.
Nadine Vogel: I know. [Laughter]
Chai Feldblum: You don't see the dis I only see the ability, excuse me please see me in my fullness you know, and I have a disability I have anxiety disorder okay.
Nadine Vogel: say it loud say it proud. put a capital D on it.
Chai Feldblum: say it loud say it proud.
Nadine Vogel: So so yeah It is interesting right and how people do they want to hide it, but then they don't want other people to hide it it's a little little strange.
Nadine Vogel: So, then, we have to, so we have a A-D-A, then we have the O-F-C-C-P the office of federal contract compliance programs, which you know for federal contractors.
Nadine Vogel: 7% we have this utilization goal, so I find that companies are a little confused about well O-F-C-C-P, A-D-A what do I really have to do? well it's a goal, can we talk about that a little bit as well.
NORMA STANLEY: yeah great question.
Chai Feldblum: So let's also talk about it in the context of the history.
Chai Feldblum: of disability rights so here you have for years we've had vocational rehabilitation programs.
Chai Feldblum: In 1973 the vocational rehabilitation programs get reauthorized it's all just about money right sending you to the States to get people rehab so they can go into jobs again. Okay, then you have Title V of the law it's called Miscellaneous.
Chai Feldblum: miscellaneous and then Section 501 of that law says federal agencies have to engage in affirmative action in hiring people with disabilities so that's affirmative action that's way beyond just non discrimination.
Chai Feldblum: 501 affirmative action and then they have 503 Section 503 that says if you're a federal contractor, you have to engage in affirmative action right, and then they add Section 504.
Chai Feldblum: Which is the first provision ever, right, that is going to address the private sector, right. Remember I said A-D-A first time that it reached all private employers and I said entities that are not getting federal funds.
Nadine Vogel:Right.
Chai Feldblum: Because in 1973 Section 504 said, you know what if you're getting federal financial assistance, not a contract, but grants, assistance in any way, you may not discriminate against a person with the disability.
Chai Feldblum: And the concept was here are all these people going through voc rehab that are perfectly capable of going and getting a job, but for the fact that they're not getting hired right.
Nadine Vogel: Minor detail.
Chai Feldblum: so it's just non discrimination so E-E-O-C the equal employment opportunity Commission where, as you noted, I was Commissioner for nine years.
Chai Feldblum: That Agency has the responsibility for enforcing Title VII, A-D-A, it also has responsibility for enforcing Section 501 of the rehabilitation act.
Chai Feldblum: And the Department of Labor had responsibility for enforcing section 503 for federal contractors, as you noted the office of federal contractor compliance programs O-F-C-C-P has a responsibility.
Chai Feldblum: During the Obama Administration, there was a huge advance in enforcing those two laws remember 1973 they've been there since.
Chai Feldblum: 1973, but they were not regulations that really gave it much of them, meaning.
Nadine Vogel: There was no teeth.
Chai Feldblum: it's not even let's get to teeth in a second.
Chai Feldblum: Why, I mean, even even without the teeth, it was like there was no detail.
Nadine Vogel: right right
Chai Feldblum: it's like oh engaging affirmative action Okay, thank you for sharing.
Chai Feldblum: And what does that mean you know, and there was a lot of detail about affirmative action on the basis of race and sex which.
Chai Feldblum: also applies to federal contractors, so there was a real advance when O-F-C-C-P took the lead.
Chai Feldblum: And at least said, you know what this means it means you have to have an aspirational goal.
Chai Feldblum: There was no way in this country that we were going to do, quotas, when you could do quotas with affirmative action there was no way.
Chai Feldblum: Politically, that was gonna happen, but you could at least say that you have to have a goal you know goals are important they they focus the mind you know, unfortunately, they, even though they set a 7% goal they then let anyone with a disability, as defined under the A-D-A.
Nadine Vogel: Right.
Chai Feldblum: would count towards that 7% goal now as you noted, I mean I was active in helping to draft the first A-D-A in 1990.
Chai Feldblum: And then, very importantly, the A-D-A amendments of 2008 that responded to courts, when the judges where narrowing the definition of disability they never thought someone with a heart attack would be a person with a disability yeah you know, even though that person.
Chai Feldblum: Not given good you know projects anymore, you know it's like you would disabled enough to be discriminated against, but not to have a remedy.
Nadine Vogel: Exactly.
Chai Feldblum: right so that law it's like millions and millions of people in this country.
Chai Feldblum: Who fit the definition of disability under the A-D-A wouldn't ever self identify that way correct they get discriminated against in the lawyer tells them, they have some right so.
Chai Feldblum: That was always the problem with that 7%, goal, and so, when we had the E-E-O-C we followed department of Labor we were two years, three years behind them.
Chai Feldblum: But I was very active in helping to write that regulation and I was like by God.
Chai Feldblum: We are going to have a sub goals and we created a 12% aspirational goal for people with a disability, as defined under the A-D-A.
Nadine Vogel: Right.
Chai Feldblum: because oh my God, all you have to do is have a culture that safe enough for people to self identify that they have diabetes.
Nadine Vogel: Right.
Chai Feldblum: Crohn's disease or whatever.
Nadine Vogel: Right well that's a whole nother topic to having that culture but we'll come back.
Chai Feldblum: Having that culture.
Chai Feldblum: The importance of that you know target for federal agency.
Nadine Vogel: yeah.
Chai Feldblum: but then we created a 2% sub goal.
Chai Feldblum: 2% of people of what we call targeted disabilities and those were the ones with the more manifest disabilities but so aspiration goals hey that's better than just non discrimination but where's the teeth right so that the teeth with the Federal contractor is you can not renew the contract.
Nadin Vogel:Right.
Chai Feldblum: Do you think that's gonna happen?
Nadine Vogel: no way in hell.
Nadine Vogel: No, way in hell, and the companies know it. The companies now it.
Chai Feldblum: You know now it's not nothing I really want to stress that.
Nadine Vogel: Right.
Chai Feldblum: I consider that a huge advance when department of Labor put out that regulation because goals focus the mind.
Nadine Vogel: No absolutely.
Chai Feldblum: i'm in, and I will tell you in the federal agencies, even though E-E-O-C didn't have a hammer either you know they had to report to us every year and I will tell you that percentage has increased
Nadine Vogel: okay
Chai Feldblum: in federal agencies moving up to 2%.
Nadine Vogel: Okay.
Chai Feldblum: So it's something it's just not enough.
Nadine Vogel: Not enough exactly exactly so ay, ya, yay there's so much more we can talk about.
Chai Feldblum: Yeah I see Norma. I know I know folks you all will just be listening to this by audio, but I just want to let you know Norma is like a yeah baby.
[Laughter.]
NORMA STANLEY: You know, I have a daughter who is a wheelchair user.
NORMA STANLEY: You know there's so much that I see today that I thought was addressed through the A-D-A that's been neglected ignored or doesn't exist or it's just amazing to me and so yeah it's just, it has to continually be addressed, and put these new things in place so that.
NORMA STANLEY: is dealing with what we're dealing with today for our Community
Nadine Vogel: right.
NORMA STANLEY: And nobody has been doing that.
Chai Feldblum: yeah. But you know as a wheelchair user, I know that one of the things that we all know, has made a difference is at least some better accessibility not where it needs to be, and I will tell you.
Chai Feldblum: you know when we wrote Title III of the A-D-A which applied to like businesses where they had to do and we made up a new term of sort of basically easily accessible, you know.
Chai Feldblum: feasible easily achievable readily achievable I.
Chai Feldblum: knew that we had made up a.
Chai Feldblum: word I remember sitting for someone, how do we say that if you're an existing building okay now renovations and that new construction, when we were able to get more.
Chai Feldblum: Just readily achievable like if you have one step in front of your restaurant okay you gotta put a ramp.
Nadine Vogel: right
Chai Feldblum: readily achievable. and then Congress gave and we wrote a two year grace period.
Chai Feldblum: Before that had to come into effect, so it was totally annoying to go out on a date with me during those two years because I would go into a restaurant and there was a step and I would go well, just wait just wait two years from now, that step won't be here, and they would go whoa.
Nadine Vogel: so Let me.
Nadine Vogel: just tell you.
Nadine Vogel: So I when I go into restaurants, I immediately go into the restrooms because I want to see that the accessible stall is filled with storage right it's filled with.
Nadine Vogel: retail stores you go into the dressing room the accessible dress room that's where they're like putting the storage and I drive everyone crazy when I do that but.
Nadine Vogel: now that's another conversation.
Nadine Vogel: And what I want to do now is switch gears a little bit or move on.
Nadine Vogel: Right now, you are the vice, Chair of the government commission that oversees the AbilityOne Program.
Nadine Vogel: and AbilityOne really focuses on significant disabilities so before we get into the program itself i'm wondering two things one if you can share why we're focused on significant disabilities and how you actually define that.
Chai Feldblum: So the AbilityOne program was created in 1938 and it was geared just for people who are blind.
Chai Feldblum: People who are blind so that's easily defined, and it was enacted, because the assumption was that people who are blind cannot possibly get real jobs on their own.
Chai Feldblum: I mean Hello that's ridiculous.
Chai Feldblum: So the blind folks who are advocating for this law said, well, can we just get some of the federal contracts, like the ones to make brooms and Mops but areactually mentioned in the Statute.
Chai Feldblum: Those contracts go to nonprofit agencies that will fire basically almost all blind people so that's 1938 it gets started just for blind people.
Chai Feldblum: 1971.
Chai Feldblum: Senator Jacob javits says, you know what let's expand this law for people with they will call people with severe disabilities.
Chai Feldblum: And it was defined in the Statute as people whose disability made them currently unable to participate in quote normal competitive employment.
Chai Feldblum: That was actually the definition of disability that you couldn't get a regular job, so what we'll do is put aside government contracts for you and in 1938 it was just producing products, goods.
Chai Feldblum: And in 1971 they amended that to include services, you know so things like janitorial and other thing that people with let's say.
Chai Feldblum: severe disabilities could do right, so the entire definition focus was on people who who almost needed some charity right, it was almost sort of seen as charity but.
Chai Feldblum: You know you get some you get some money right and, by the way, Senator javits was also the person who pushed for Section 504 in later years.
Nadine Vogel: Really. I did not know that.
Chai Feldblum: yeah it was his staff person who is you know.
Chai Feldblum: scraped up from goodwill to civil rights sort of goes through this Richard Scotches book.
Chai Feldblum: But that's because he just assumed there were like two types of people with disabilities.
Chai Feldblum: There was some disabilities, where you could get voc rehab, and then, so long as it wasn't discrimination, you could get a job and Section 504.
Chai Feldblum: And there were other people who had the type of disability that made them simply unable to compete in the normal economy and we're gonna put these government contracts for them.
Chai Feldblum: so fast, forward many, many years.
Chai Feldblum: And you know you have this program that's now $4 billion in federal contracts.
Nadine Vogel: You know people B, as in boy.
Chai Feldblum: B, as in boy. $4 billion dollars a lot of the contracts are pretty sophisticated you know I-T and hey manufacturing today is sophisticated with computers, etc, but you still have and so, by the way, creating a lot of jobs, a lot of actually pretty good jobs as i've just heard.
Chai Feldblum: And it's 75% of the direct Labor hours you know they count the.
Chai Feldblum: hours that go into services and 75% of those direct Labor hours have to be done by people who are blind or people with significant disabilities severe disability, so now, how is that defined?
Nadine Vogel: right.
Chai Feldblum: well it's not. A statutory provision that says it's defined by saying you can't work but they're actually doing pretty sophisticated jobs so it's sort of more for people who.
Chai Feldblum: need more job support.
Nadine Vogel: Got it.
Chai Feldblum: That sort of how it's been defined, but it's still still sort of vague and one of the main goals that we have that AbilityOne Commission now.
Chai Feldblum: it's not just my goal, I was joined by three other citizen Members, you know we came on us that's into the Commission.
Chai Feldblum: Is that very clear definitions like you're on SSI SSDI you're trying to get back to work that should count as significantly disabled.
Nadine Vogel: right
Chai Feldblum: Okay, no you're. you're getting you know you would have been eligible for voc rehab you know that's cool you need some additional let's say support so we are working on that in our strategic plan.
Nadin Vogel: okay
Chai Feldblum: it's totally worth reading if you want to get a sense of.
Nadine Vogel: I have read it.
Chai Feldblum: Okay, well, we can see, we have pivoting this program baby.
Nadine Vogel: I actually read it twice, because I, I found it really like oh you go, you go girl.
Chai Feldblum: It obviously let's be real we there is a statute that we're dealing with.
Nadine Vogel: Right right.
Chai Feldblum: We can't really change that much we can change the ratio of 75% but I will tell you a lot of these nonprofits they're very sophisticated they are sometimes using subcontractors.
Chai Feldblum: Yes, there's a lot of integration between their employees and the subcontractors and that's fine in terms of the ratio we're planning to really try to support that.
Chai Feldblum: To increase integration, sometimes you're placing people at a government location, no one even you look, just like every other employee in that place so.
Chai Feldblum: We will try to encourage what we can within the current system and the first objective of our strategic plan first strategic objective is work with Congress to like Hello update the program since 1938.
NORMA STANLEY: wow that's long time.
Nadine Vogel: Ay, ya, yay.
Chai Feldblum: and
Chai Feldblum: Again let's be really it it did come from this sense of charity I get that, and it did provide jobs, then, and again.
Chai Feldblum: and is providing jobs now so, for example, before I came on the Commission, the one of the main reports, I read was the National Council on disability report.
Chai Feldblum: which again is also worth reading they have you know interviews and research and they came up with the conclusion, that
Chai Feldblum: You simply have to get rid of this program it is inherently flawed based on its you know founding principles.
Chai Feldblum: phase it out over eight years and 40,000 employees were their place them in federal contractors and other federal contractors and amend Section S03 to make it a mandate, a quota an actual quota. And then.
Nadine Vogel: Woo, hoo!
Chai Feldblum: here's the thing Nadine.
Chai Feldblum: let's go back to the first point. Do you really think this Congress is going to pass a quota.
Nadine Vogel: Absolutely not.
Nadine Vogel: But the thought of it is so cool.
Chai Feldblum: It is cool.
Chai Feldblum: But the thing is it's not gonna happen.
Chai Feldblum: And even if they did.
Chai Feldblum: Do you think they're going to be able to enforce it, no. I knew the first time I read that report I knew two things I knew that this, this was a program that had a lot of potential.
Chai Feldblum: That had a deep problem in terms of its philosophical beginnings, but it had a lot of potential and the solution of phasing it out completely was not going to help people with significant disabilities I knew.
Nadine Vogel: Those would leave themout. I.
Chai Feldblum: said yes to come onto the Commission what I did know a year ago, and my term started.
Chai Feldblum: August 1 2021
Nadine Vogel: Happy Anniversary
Chai Feldblum: yeah. What I didn't know is how we should change the Program.
Chai Feldblum: Right and I knew what I didn't know I mean I don't know I didn't.
Chai Feldblum: know procurement I didn't run one of these NPA is one of the great nonprofit organizations is a nonprofit agency what's fantastic about my two.
Chai Feldblum: Of the three citizen Members two have them run these nonprofit agencies that have tons of competitive integrated employment, then they also have like a small AbilityOne.
Chai Feldblum: You know contract with they're stuck with the ratio and then another citizen Member so that's Brian Bashan, who is from the San Francisco lighthouse for the blind and Chris Brandt from a place called At Work.
Nadine Vogel: mm hmm.
Chai Feldblum: And then gave Hasselhoff who who had been the lobbyist, the government person for National Federation for the blind.
Chai Feldblum: That had lots of problems with the AbilityOne Commission because of how getting traditionally how they treated employees and the types of jobs right.
Chai Feldblum: The people who think that the types of jobs now are still you know disproportionally manual and at some minimum wage yeah there was still some but.
Chai Feldblum: You know your your listeners should know major thing we put out a regulation last week saying okay absolutely no more payment of seven minimum wages in any ability one contract Okay, and you have till.
Chai Feldblum: October 19 and 2022 to come into compliance, but as an actual matter, they were only 1200 employees. out of 40,000
Chai Feldblum: that were being be paid that minimum wage.
Nadine Vogel: Okay.
Nadine Vogel: I mean still 1200 too many, but.
Chai Feldblum: Well, 1200 too many and that's because they were in contracts producing products.
Chai Feldblum: And the executive order that President Obama issued That said, if you're providing a service contract to the federal government in $10.25 an hour, and now this President Biden executive order $15 and as those applied to AbilityOne employees, even if there was a what's called a 14(c) certificate.
Chai Feldblum: But we were making a difference for those employees in producing goods.
Nadine Vogel: right right.
Nadine Vogel: Well, I didn't wow.
NORMA STANLEY: So much knowledge though.
Nadine Vogel: there's just so much, and I think the strategic plan if it's a four year plan correct.
Chai Feldblum: it's a five year plan.
Nadine Vogel: five year plan.
Nadine Vogel: And in you know I guess i'm going to ask maybe what I should ask which is.
Nadine Vogel: Do you believe when you look at the plan yourself based on all your background, do you believe the plan is achievable and it will be able to help us move the needle.
Chai Feldblum: I believe Objectives two, three and four of the plan are absolutely achievable literally we spent six months.
Nadine Vogel: Okay, Okay.
Chai Feldblum: Really.
Chai Feldblum: The reason I say that, let me just tell you strategic objective one is the one that says Congress should amend the act to change it.
Nadine Vogel: Right.
Chai Feldblum: I cannot tell you, if that's achievable, because that lies with Congress, and we can do very little at AbilityOne Commission we can do something which is not be a barrier to change.
Chai Feldblum: Which
Chai Feldblum: I will tell you, for many years that let's just say could have been the case.
Chai Feldblum: So we not going to be barrier anymore, and to the contrary we're going to be an active participant.
Chai Feldblum: Okay in trying to help, so that I can tell you that about strategic objective 1. 2, 3 and 4 absolutely.
Nadine Vogel: Okay.
Chai Feldblum: because strategic objective 2 is to increase what we call good jobs in the ability, one in every ability one contract and a good job is where people are making competitive wages and benefits not just minimum wage.
Chai Feldblum: Competitive wages, where they are covered under all employment laws, including A-D-A, Title VII, national Labor Relations Act, they are employees, they're not.
Chai Feldblum: People getting rehab services that aren't getting covered under employment laws.
Chai Feldblum: Three. they get job customization you know right when you come in, we are saying a good job is you are spending money and resources and making sure it's the right job for them right they have the right job supports right.
Chai Feldblum: And four. that you've done a person centered employment plan with them and how folks do jobs. let me tell you, those last three things you're not going to get in a regular employer.
Nadine Vogel: No. for sure No.
Chai Feldblum: So we call those good jobs, then we said we'd also like to see optimal jobs.
Chai Feldblum: I spent a lot of time making up words in my career.
Chai Feldblum: to capture certain legal points right.
Nadine Vogel: yeah.
Chai Feldblum: Optimal job we say is one with is real integration between people with and without disabilities working together, doing the same. type of job.
Nadine Vogel: Right absolutely
Chai Feldblum: this is back to what I said before, can you use subcontractors can can you figure out ways to create integration.
Chai Feldblum: even within the current structure but but we're not going to force you into it, because we can't, if some contracts aren't. so objective number two. good job absolutely I believe five years from now, it
Chai Feldblum: will happen. Objective three is just good governance within the Comission let's let's have people actually producing those goods and services well you know what I mean.
Chai Feldblum: You know just just everything backwards, governance and the last one.
Chai Feldblum: harkens back to what we just talked about in terms of affirmative action, the last one is.
Chai Feldblum: Creating making the AbilityOne contract that job, a gateway into getting a job at a federal contract or in the federal agencies.
Chai Feldblum: Right, so let us partner with O-F-C-C-P so that these federal contractors will hire people who are blind or have significant disabilities, because we're hooking them up.
Chai Feldblum: With those.
Nadine Vogel: locations, I think that.
Nadine Vogel: is key, when I read that they I think you know, because one of the things that that i've always had such an issue with is that you know every agency is doing great work but they're kind of like on their own island.
Nadine Vogel: So if somehow we could talk to one another and come together and say okay we'll take this part you take this and I just found that's always been a challenge.
Chai Feldblum: It has been I will say that during the Obama Administration, together with.
Chai Feldblum: A few other folks Bob Williams and Eve Hill we created this Interagency group called Curb Curb Cuts to the Middle Class.
Chai Feldblum: which was having agencies work together.
Chai Feldblum: but it wasn't led by the White House, it was just us and other agencies, the Biden administration has been fantastic they have put a person at Domestic Policy Council.
Chai Feldblum: WHO is responsible for this Kim Knackstedt who was the first one, for the first year or so what's fantastic and pulling together the agencies, Day Al-Mohammed, who is there now.
Nadine Vogel: Absolutely good, good.
Chai Feldblum: this administration is doing as much as it can.
Chai Feldblum: I believe, looking at agencies to work together, having said that, there is simply limitations government is big, but when you say, do I think this is feasible for let's say this last objective as well, yes, I would like to see that 2% in the federal agencies go up to 4%.
Nadine Vogel: Oh yeah.
Chai Feldblum: let's make that from some of those 40,000 employees that are currently working on a federal contract.
Nadine Vogel: Absolutely.
Chai Feldblum: and in a non integrated setting.
Nadine Vogel: Absolutely, and so, for our listeners you heard it here 4%.
NORMA STANLEY: Okay.
Nadine Vogel: While we're at it, let's go to five.
Chai Feldblum: I had been known a former girlfriend of mine used to call me an R-N-G which is a random numbers generator okay so so please be clear, I just sort of made up that number by dare.
Nadine Vogel: Let me just say this is probably one of the reasons you and I get along so well I.
Nadine Vogel: Make it up as we go if it sounds good, and then we can try to achieve it, why not.
Nadine Vogel: Well, I I am just.
Nadine Vogel: i'm so sad to say, we are out of time, but i'm thinking, we need a part two right let's let's come back and revisit how's AbilityOne going, what's happening?
Nadine Vogel: Oh, my gosh Chai, thank you so much, and thank you one, thank you for being on the podcast but to thank you for just being you and for all the work you have done, continue to do over the years, we just love you we just love you I want you to know that.
Chai Feldblum: Oh, thank you, thank you for doing this podcast as part of the movement and Norma what a delight. what it delight.
NORMA STANLEY: I am so glad to meet you, and this is i'm so excited about the work that you've been.
NORMA STANLEY: Doing and are doing so, yes, we definitely need to have you back and share some more.
Nadine Vogel: Absolutely Center our listeners, thank you for joining us once again on another episode of disabled lives matter, this is nadine vogel and norma stanley my co host signing off and we will see you on the next episode bye. bye everybody.
NORMA STANLEY: be blessed everyone.
Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!
Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.
Thursday Mar 30, 2023
Thursday Mar 30, 2023
Season 03, Episode 01
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Nadine Vogel & Norma Stanley
Intro: [Music playing in background] Disabled Lives Matter... here we go!
Voiceover: To all our listeners, thank you for joining us and welcome to the Season 3 opening episode of the Disabled Lives Matter Podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley! Nadine Norma take it away.
Nadine Vogel: Okay, Hello, everyone and welcome to another episode of Disabled Lives Matter. I'm Nadine Vogel one of your co-host joined by Norma Stanley. Hey Norma.
NORMA STANLEY: Hello. How you guys doing today?
NORMA STANLEY: Yeah. Good. Yeah. This, you know, we don't do this enough. But for our listeners, as you know, every so often, Norma and I just get on and do our own thing, and we're our own guests whenever we think there's a topic that we should talk about, right?
NORMA STANLEY: Absolutely absolutely. And you know we're in toward the end of March, and Women's History Month is in March, and
NORMA STANLEY: there's so many great women that we could be talking about just in general, who do so many incredible, and, you know
NORMA STANLEY: vital things to contribute to society. But there are a couple of women that I was hoping we could talk about today who have contributed immense value, and have changed the lives of so many people as a result of their own lives.
NORMA STANLEY: and that's Miss Judy Heumann and Miss Lois Curtis.
Nadine Vogel: Well, let's start with Lois talk to us abou her.
NORMA STANLEY: Well, Lois Curtis, actually is a woman who.
NORMA STANLEY: was born with intellectual disabilities. I believe it was autism, but she was institutionalized for much of her life. She passed away last November at the age of 55,
NORMA STANLEY: and she didn't want to be institutionalized, and that's what they used to do to. You know people like that when you had a disability they didn't really try to figure out what was wrong. If you could possibly live in the community.
NORMA STANLEY: as you know, as an individual person, they just put you in an institution and
NORMA STANLEY: a lawyer, she and another woman who was going through the same thing.
NORMA STANLEY: You know they They basically went to the Supreme Court to the help of a a a lawyer Sue Jamieson.
NORMA STANLEY: and they basically sued for their independence. And it was it became it. It it passed, and it became known as the Olmsted decision.
NORMA STANLEY: and it to help people like Elaine and people like Lois to be able to live outside of institutions that have independent lives. It opened up the door for a lot of help
NORMA STANLEY: for family like my daughter, who they have, you know, community living services. Now, as a result of that Olmsted decision.
NORMA STANLEY: so people Don't necessarily have to be
NORMA STANLEY: kept in institutions. They could come out and live in group homes and live in the Independent, their own little homes. If they had the capability of doing so, and and Lois Curtis was a a major part of
NORMA STANLEY: part of making that happen. And so I wanted to kind of talk about her because she was also an artist.
NORMA STANLEY: You know. She also
NORMA STANLEY: created little individual fine art types of pieces that that became here in Atlanta she was. She came out of the Atlanta Georgia area.
NORMA STANLEY: and you know she was able to sell her arts, and and it became, you know, auctioning off of art almost a little bit like what the the the you know. One of the guests that we had on one of our previous segments. We're talking about the the gifts that are inherent
NORMA STANLEY: in people with visible and non-visible
NORMA STANLEY: disabilities. I mean they're just gifted in so many different areas, and and she was she was. The art was, was was really
NORMA STANLEY: the very unique and very, very good. She was very good at it. And so so yeah, Lois was somebody. She had a beautiful smile. She got to meet President Obama.
Nadine Vogel: Really!
NORMA STANLEY: Yeah. They They went up and met with him Miss Jamieson.
NORMA STANLEY: Miss Wilson, and Lois for some kind of special event that they had in twenties. I think it was 2016 before, you know, in transit, you know they
NORMA STANLEY: He left the office. But you know she was a She was a major contributor to the disability population, and and and because of the work that she did, and and and she didn't really understand. Lois didn't really understand how significant
NORMA STANLEY: her wanting to be living in the community was, and how.
NORMA STANLEY: by her pushing for that, and by Sue Jamieson, the lawyer
NORMA STANLEY: helping her to make that happen.
NORMA STANLEY: It helped change the lives of of millions of people.
Nadine Vogel: Isn't that amazing.
NORMA STANLEY: Yeah. So I wanted to bring her up as well as of course. Excuse me. Excuse me. Everybody knows about Judy, Judy Heumann. Judith
NORMA STANLEY: I guess is her official name. Judy Heumann passed away
NORMA STANLEY: the beginning of this month of March, and it was a surprise to everybody.
Nadine Vogel: It was, she was 75.
NORMA STANLEY: She was 75.
Nadine Vogel: And she seemed so young... right?
NORMA STANLEY: Yes, exactly. But she, Judith Heumann, was known as the Mother of the Disability Rights Revolution.
Nadine Vogel: Yup.
NORMA STANLEY: and so she is somebody who, you know. I only met one time, but you know I knew about her through friends of mine who knew her. Well.
Nadine Vogel: right.
NORMA STANLEY: you know I don't know. How did you know her?
Nadine Vogel: Yeah. So I knew Judy. Actually, she spoke at one of my company's, Springboard, events. I think it was last year.
Nadine Vogel: that she spoke for us, and
Nadine Vogel: you know you just felt like you were in the presence of royalty.
NORMA STANLEY: Absolutely.
Nadine Vogel: She. you know she was just so amazing. And you know it's funny because you talk about. You know the Mother of Disability Rights movement. So I don't know if that people actually know, but she was born.
Nadine Vogel: She was diagnosed with polio.
Nadine Vogel: when she was, I think, 18 months
Nadine Vogel: She spent 3 months in an iron lung
NORMA STANLEY: I did not know that.
Nadine Vogel: and then.
Nadine Vogel: But even with all of that, she said that I remember saying that she just you know she's to her. She was normal.
Nadine Vogel: right, she was typical.
NORMA STANLEY: Right.
Nadine Vogel: she was typical.
Nadine Vogel: And then it was until she was about 8 years old. A child came up to her and asked her if she was sick. and she's just like
Nadine Vogel: no. And then what she realized is when she went to school that one child was many.
Nadine Vogel: Everybody just assumed she was sick.
Nadine Vogel: and it was very she. I remember saying it was like so isolating. You know the kids wouldn't play with her things things like that.
Nadine Vogel: But her mom and we were talking about, you know, special needs parents, right. Protected her a lot.
NORMA STANLEY: Moms.
Nadine Vogel: And she said to me: I remember, she said, that I said one day her mom just went
Nadine Vogel: storming into school
Nadine Vogel: because she got her kindergarten photo back.
Nadine Vogel: and the wheelchair was covered in a blanket.
NORMA STANLEY: Wow.
Nadine Vogel: and a gray blanket to kind of match the background, so that the wheelchair would not be seen in the photo.
Nadine Vogel: so the mom, you know her mom was like running in, and I was like this will never
Nadine Vogel: ever happen again. But then, she said. You know, because of
Nadine Vogel: these experiences that she had in school, it really made her want to become a teacher.
NORMA STANLEY: Yeah.
Nadine Vogel: And in those days and to become a New York City school teacher, she she said. You have written tests and oral tests and a medical test.
Nadine Vogel: I don't think they do that quite the same way anymore.
Nadine Vogel: But she said that the doctor, just
Nadine Vogel: asked such invasive questions she couldn't even imagine someone else without a disability being asked the same kinds of questions.
Nadine Vogel: and and the results of that was that she didn't qualify. So she decided to sue them.
Nadine Vogel: and that was kind of the the the start of of
Nadine Vogel: protecting the rights of people with disabilities. I don't know if people realized in the seventies she led the sit-in in San Francisco
NORMA STANLEY: That's right.
Nadine Vogel: in the Government building. She shut down traffic completely.
NORMA STANLEY: She was no joke, I mean she did not play.
Nadine Vogel: and that and those sit-ins turned into
Nadine Vogel: when Nixon signed what was the Rehabilitation Act of 1973. The direct result of that and those protests really revolved around one part of the rehabilitation so section 504.
Nadine Vogel: That any organization that gets, you know, Federal funds can't exclude people with disabilities.
NORMA STANLEY: Right?
Nadine Vogel: So those became known as the 504 sit-ins.
Nadine Vogel: It's so interesting the history, and here is what I I love this trivia. I remember that she said that
Nadine Vogel: that the 504 sit-ins still today.
Nadine Vogel: are recognized as the longest Federal sit in and take over of a Federal building.
NORMA STANLEY: Wow!
Nadine Vogel: And they did, and I don't know anyone who may be listening has ever seen the Netflix documentary. Crip Camp. But that was a lot of her
NORMA STANLEY: as a young counselor she was in that film, and she they talked about.
NORMA STANLEY: You know, the people who in that film were were counselors with actual teenagers going to camp, the special Camp Jened that they had up in upstate New York.
NORMA STANLEY: and and that's a powerful documentary showing.
NORMA STANLEY: You know that people with disabilities, teenagers with disabilities just like any other teenager. They want to, You know they want to do things teenagers do, and that's what they showed in that
NORMA STANLEY: in that video, and and how it turned into that revolution, and how you know with the disability population and and the people who are part of that film.
NORMA STANLEY: We're integral parts of that whole movement that started with the Judy, and and that.
Nadine Vogel: absolutely. And I don't know if you remember I I can't remember now how long ago, but it wasn't too Long ago we interviewed someone on this show
Nadine Vogel: who was a counselor with her.
NORMA STANLEY: Lionel, Lionel Woodyard. Yes, yes.
Nadine Vogel: And I remember when I told Judy. You know who we just interviewed, that was really funny, but
Nadine Vogel: you know. Crip Camp.
Nadine Vogel: is to me, I think the the most the important thing that came out of that movie was to show that
Nadine Vogel: kids with disabilities, teams with disabilities are still kids in teams.
NORMA STANLEY: Yup.
Nadine Vogel: Right? That we shouldn't lead They shouldn't lead with the disability. The disability is, in addition to
Nadine Vogel: it's not who they are as people. We still need to give our kids the kid experience.
NORMA STANLEY: absolutely.
Nadine Vogel: right. It's it's still. It's still part of life, and you know, and and that's really
Nadine Vogel: why she then, pushed so hard for civil rights protection for the A-D-A.
NORMA STANLEY: Yup.
Nadine Vogel: because
Nadine Vogel: you know it Wasn't just about Federal buildings. It She wanted it
Nadine Vogel: across the
NORMA STANLEY: Throughout.
Nadine Vogel: every aspect of life. And so, I remember her saying that, in 1990
Nadine Vogel: when when Bush signed the A-D-A that was, you know, more than a decade later. after they'd done the sit-ins. And she just said, You know she was going to push and she wasn't accepting anything less, and what's really interesting is, I had the opportunity to be at the White House
Nadine Vogel: for the twentieth anniversary, and I think it's the twentieth anniversary of the A-D-A, and I had my older daughter with me, who at the time I think, was 19,
Nadine Vogel: 19, 21. It was right around that age, and and so she was sitting there listening
Nadine Vogel: to the history of the A-D-A, and I remember her saying. What do you mean? This wasn't here before
Nadine Vogel: like like to her? She couldn't imagine life without it, right? It was like.
NORMA STANLEY: She couldn't imagine. Yeah.
Nadine Vogel: And then she was. Well, what do kids like me do? What it. How did people work? like it was so just impossible to imagine that it didn't exist
NORMA STANLEY: Exactly.
Nadine Vogel: And and so again, you know just to show
Nadine Vogel: in little ways, in big ways, how Judy's life
Nadine Vogel: had such impact.
NORMA STANLEY: Yup.
Nadine Vogel: on so many people, right? and and still does.
NORMA STANLEY: And still does. Yeah. And the thing is that she was just so. You know she was so humble about it, you know she was really, even though she had impacted so many people.
NORMA STANLEY: You know the world, you know people with disabilities around the world.
NORMA STANLEY: She was always so, you know. Matter of fact, it's like this should have happened many years ago. Why is you know? Why are we still even talking about this? you know and she was like that up until the end I was like this.
Nadine Vogel: Well, it is interesting, too, because at Springboard, we always talk about mainstream people with disabilities, right? They talk about that in the school system mainsteaming.
Nadine Vogel: and by her doing that movie
Nadine Vogel: by, you know, she was interviewed by Trevor Noah.
NORMA STANLEY: Oh absolutely.
Nadine Vogel: She was interviewed on all these incredible programs. I think that
Nadine Vogel: people with disabilities are often invisible to the main straight main stage.
Nadine Vogel: She brought the visibility and brought it in the right way.
NORMA STANLEY: Yes.
Nadine Vogel: Right? Not that we're a cause to supportm, or Oh poor Judy, but really brings it to the forefront like hey.
NORMA STANLEY: that's right, that whole You know nothing about us.
Nadine Vogel: without us. Right.
NORMA STANLEY: She made sure that that happened, and made sure that people understood why
NORMA STANLEY: that was such a a critical
NORMA STANLEY: statement before the disability population and the community as a whole.
NORMA STANLEY: and it's true, you know Don't make decisions without me or my daughter, or you know you don't know who you don't know enough about me as an individual about my daughter as an individual or about the community. And you know we're seeing a lot of that as women
NORMA STANLEY: in our community in the political scene now, or people just making decisions that they'll take into account a lot of the people who, actually being impacted by these decisions.
Nadine Vogel: absolutely. I I couldn't agree more. You know it's it's interesting. We. So one of my other companies called the WIP Group, Women Influence, Power.
Nadine Vogel: is about women's empowerment, and we've been doing a lot of
Nadine Vogel: programming around menopause.
NORMA STANLEY: hmm.
Nadine Vogel: And I've been hearing more and more and more from women saying.
Nadine Vogel: You get to a certain age and you feel you're like you're invisible again.
Nadine Vogel: And I was having this conversation with you the other day, and I said, yeah, it's probably similar to, although different than people with disabilities. Who you know. Hello! I'm here. Why, Aren't, you, you know, engaging me and talking with me.
Nadine Vogel: And we were talking about it in the beauty industry in particular.
Nadine Vogel: where where that happens, you know. And so you know it's. It's a shame because I would. I would love to bring Judy into that conversation.
NORMA STANLEY: oh sure.
Nadine Vogel: right as well. I think that she could make some major impact. I don't know if people know she she has. She's written a children's book. She's written a few books, but in most recent is her memoir.
NORMA STANLEY: Yes, Being Heumann
Nadine Vogel: Being Heumann, and you know, when I I remember, I asked her, you know what's the elevator pitch about the book, and she said, it's full of stories of triumph, love and total bad-ass'ery.
Yes. And that's Judy.
Nadine Vogel: I didn't even know that was a word. Okay.
NORMA STANLEY: It was like Judy to make up things like that, even if it wasn't a word she's gonna make sure it was going to become one. Become a word.
Nadine Vogel: Well in her focus, she said that you know, We have to believe in community right? You know the the guests that we had on our last show is talking about the people when she was traveling. So you have to believe in community.
Nadine Vogel: But she said that she has to. We have to remember that it's about democracy
Nadine Vogel: to actually deliver equality and justice.
NORMA STANLEY: Yeah.
Nadine Vogel: Right? So, yes, it has to be the people but it. And when she said that what she meant by it was. you know, if you still today, even with A-D-A and everything else you can't get into a building.
Nadine Vogel: You're discriminated against, she said. You have to sue because if you don't and you just let it go. What about the next person.
NORMA STANLEY: Yep.
Nadine Vogel: and the next person after that. right? So it really, you know, we have to show that the A-D-A. It's not just there to say, oh, you know you actually have the A-D-A, but rather how it gets enforced.
NORMA STANLEY: absolutely. a friend of mine who actually was also on our show last year, I believe. But she went through a situation, and I don't know if it, if you know.
NORMA STANLEY: I don't know if she sued. But she went out of town she was traveling, and she when she came back she's a wheelchair user also. And when she came back somebody had
NORMA STANLEY: parked on
NORMA STANLEY: the space that you're not supposed to park
Nadine Vogel: on, so that she and so she couldn't get into her van. She couldn't get her wheelchair
NORMA STANLEY: into the van that she can go home. She was stuck at the airport for like 3 or 4 hours.
NORMA STANLEY: They were trying to find the person her husband finally had to come and get her. They actually had to to the car that had parked illegally in that spot
NORMA STANLEY: because he had parked legally. You know the part. The part where they have the stripes there for a reason. Somebody parked there at the airport and it was right next to her van, and she
NORMA STANLEY: couldn't get into her van when she got back from her travel. And so you know, and that's something that that particular airport, it's the Atlanta airport, has to address, because they
NORMA STANLEY: they allowed that to happen, and didn't really so. She's trying to deal with all of that. So it's just like
NORMA STANLEY: you know, like you say you have to pursue it because it could happen to somebody else again and again and again.
Nadine Vogel: And I think we have to remember that
Nadine Vogel: you know, when we talk about the rights of the disabled, whether it's to work, it's to live in their own home, whatever it is. This is just in my opinion.
Nadine Vogel: basic civil rights.
NORMA STANLEY: Yeah.
Nadine Vogel: You, these these shouldn't be special programs special this special that. It should be basic civil rights.
Nadine Vogel: And.
Nadine Vogel: I, you know, think of all of the civil rights movements. We had, right in the country, you know, starting with, you know, African Americans. And then you know women's movements all these different things. What I don't get is don't we learn from history?
Nadine Vogel: Don't we learn, Why do we have to recreate the wheel every time?
NORMA STANLEY: You're right. Yeah. And and again I think again, it goes back to the people the hearts of the people, basic civil rights, basic human rights.
NORMA STANLEY: And there's too many people, in my opinion, who are
NORMA STANLEY: bullies and want to take over the lives of other people as if they have that right.
NORMA STANLEY: and that to me is unconscionable.
NORMA STANLEY: and I don't understand how they feel. They have it in in them. I don't understand that whole process, you know, and, like you say, things are where it should be going forward or going backwards. In many, many areas for women, for people of color. For you know
NORMA STANLEY: the the Gay and Lesbian community so many different things. And and so the disability community, too, because a lot of the some of the same laws and some of these same people are not taking into account
NORMA STANLEY: people with disabilities. And this community that is so huge. and the network of people that are, you know, that are emotionally attached to their community. They're not looking at any of that. They're just looking at
NORMA STANLEY: power and money exactly, and and so those that Aren't.
Nadine Vogel: you know you have many people that want to do the right thing right and and want to do good, and they have great intentions that I was just having a conversation with a couple of women with disabilities, and we were talking about intention versus impact.
NORMA STANLEY: Yeah.
Nadine Vogel: Right? And there's a lot of really good intentions out there. Well intentioned people.
Nadine Vogel: But if there's no impact on the other end.
Nadine Vogel: it just it gets. It gets to be a lonely, you know, a lonely road you're going down, and it gets frustrating because you don't what what the outcome?
NORMA STANLEY: Right.
Nadine Vogel: What's the outcome. And so we have to.
Nadine Vogel: I think we have to start first, and I know Judy, you know. Was it from believer in this start first. With
Nadine Vogel: What is it you want to see? What what do you need, and want that outcome to look like, and then let's work backwards, and figure out within the system we're in. How do we make that happen?
Nadine Vogel: You know it's interesting. We I had posted something. I think it was recently, and I was talking about D-E-I.
Nadine Vogel: Diversity, Equity, and Inclusion. and that maybe we need to look D-E-I a little more like we do E-S and G,
Nadine Vogel: which is, you know, Environment, Social Governance, and and companies have. E-S-G You know, departments. And.
Nadine Vogel: In each of those 3 categories you have to very much have measurable goals impact.
Nadine Vogel: you know sustainability. We have to know what we've done.
NORMA STANLEY: Yeah.
Nadine Vogel: How do we more so? I don't want more for an aligned D-E-I
Nadine Vogel: better with E-S-G so that we look at what the end result is the impact
Nadine Vogel: instead of Well, yeah, we, you know we we've been working on hiring people with disabilities. Well, how's that going for you? you know, like we have to really start with the other side and and governance
Nadine Vogel: when you have governance involved, it makes people accountable.
NORMA STANLEY: Yeah.
Nadine Vogel: And I find when it comes to issues of disability in particular. And i'm sure there's other strands of diversity that this comes into
Nadine Vogel: It's find. You don't always hold people's feet to the fire
Nadine Vogel: the way we do in other areas of organization. I don't know if you feel the same. But
NORMA STANLEY: yeah, well, I mean for companies that for sure that that you know having a way to measure the successes of of the efforts that you've been putting in place, is it's important. and that you said that that's something that should be built into whatever the programs
NORMA STANLEY: that are developed.
NORMA STANLEY: That's just be a part of it. because, you know, companies are all about the bottom line, and how is it benefiting them? In the long-run that's important.
Nadine Vogel: Right? But the companies have to remember that.
Nadine Vogel: Let's let's talk about a a consumer company. Let's say that. they are marketing to consumers.
Nadine Vogel: Well. a very large percentage of those consumers are either people with disabilities
Nadine Vogel: Or people like us caring for people with disabilities, right?
Nadine Vogel: So if they're working so hard to get to that bottom line.
Nadine Vogel: why are we working hard to attract that aspect of our community.
NORMA STANLEY: Right.
Nadine Vogel: They have dollars to spend. you know. So i'm gonna go back as I. I have a lot of experience working with the
Nadine Vogel: beauty industry in this in this space, and
Nadine Vogel: you know.
Nadine Vogel: holding events in stores for women with disabilities and moms who have daughters with disabilities, and and and realizing that, see they have the same dollar to spend as anybody else.
NORMA STANLEY: and spend a lot of it.
Nadine Vogel: exactly. But the assumption is unfortunately
Nadine Vogel: disabled. Woman, probably not dating, not married, not, you know, asexual, A everything.
NORMA STANLEY: That's not true at all.
Nadine Vogel: Therefore, does not need the same products or well, if they're buying products, they're doing it online because they don't want to be seen, and like really?
NORMA STANLEY: not true. And again. are they asking the actual people?
Nadine Vogel: right?
NORMA STANLEY: They're not. They're just making the assumptions.
Nadine Vogel: I mean.
NORMA STANLEY: You know my daughter's a fashionista.
Nadine Vogel: I know that.
NORMA STANLEY: I know. She, you know, she takes after me. But you know I want to make sure she looks good all the time. Everywhere she goes.
NORMA STANLEY: And yes, she wears the best of everything, and she loves perfume and and and make up and all those things she's at she's 34 years old. Why, wouldn't she. You know.
Nadine Vogel: Exactly. But to think about How many times have you gone into a department store or retail store, and you want to have a you know some makeup. a makeup application.
NORMA STANLEY: That's right.
Nadine Vogel: They always want you to climb up on those high chairs.
NORMA STANLEY: Yup, and they can't do it. I can barely do it.
Nadine Vogel: I'm 5 feet on a good hair day. Right?
NORMA STANLEY: Exactly.
Nadine Vogel: It takes a lot for me to get on one of those chairs. So the assumption again is well, if someone comes in on a wheelchair, then they would just be sitting in the wheelchair. Okay, that's true.
Nadine Vogel: But what about someone with fiscal disabilities, or of short stature
Nadine Vogel: that we don't have wheelchair to sit in. We can't get up on that chair. What are you doing for me?
Nadine Vogel: How you helping me there, babe?
NORMA STANLEY: Right?
Nadine Vogel: Right? So it's it's just interesting.
NORMA STANLEY: It's it's not asking the right questions. There's the the the ageism situation. There's the ableismm situation.
Nadine Vogel: all those isms.
NORMA STANLEY: they're not asking right questions of the right people.
Nadine Vogel: right? Right? So I think I think, as women.
Nadine Vogel: and in Women's History month, I think that one of our objectives should be. We gotta get rid of some of these isms.
NORMA STANLEY: Yes.
Nadine Vogel: At least the ones that impact us right because they are a lot. I mean, if you think about every ism out there, I think, does impact us in some way shape or form.
NORMA STANLEY: in some way. Yes.
Nadine Vogel: so for our listeners out there, whether you're a man, you're a woman
Nadine Vogel: you are. You you identify as gay, lesbian, bisexual transgender. Not binary. However. this is something we really want you to pay attention to.
Nadine Vogel: and the ism, and obviously, for purposes of this show we're talking about Ableism.
Nadine Vogel: But I think you all know that.
Nadine Vogel: as Norma said, it is a lot of other isms, and we intersect.
Nadine Vogel: We intersect. You know we're not. None of us are one thing right?
NORMA STANLEY: Right.
Nadine Vogel: and so we have to think about those intersections and say, how can we help each other.
Nadine Vogel: Because it's like you said before, Norma, it's about the people.
NORMA STANLEY: you start with the people.
Nadine Vogel: and that's what Diabled Lives Matter is about right? This podcast is about the people and the people that matter.
Nadine Vogel: No, I can't believe we are at a time. Every time you and I talk I feel like we talk for 5 min, and it's like.
NORMA STANLEY: I know I know.
Nadine Vogel: but i'm so glad that you suggested we do this.
NORMA STANLEY: Well, I'm glad we had a chance to do it, too, because I mean, you know.
NORMA STANLEY: I think if I do say so my myself. I think you and I are pretty cool people, and you know, as as I try to make a difference in our own individual ways, in our own little corners of the world. And there's so many people doing the same thing that we're hoping to bring
NORMA STANLEY: some visibility to through Disabled Lives Matter. So i'm excited to be a part of this
NORMA STANLEY: initiative in this movement, and looking forward to what's coming in the future.
Nadine Vogel: Absolutely. So to all our listeners, thank you once again for joining Norma and myself on Disabled Lives Matter. As Norma said, we are more than a podcast. We are a movement, and we look forward to seeing you next time. Bye, everybody
NORMA STANLEY: be blessed.
Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!
Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.
Monday Sep 19, 2022
Monday Sep 19, 2022
Season 02, Episode 21
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Joe Rhea
Intro: [Music playing in background] Disabled Lives Matter... here we go!
Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.
Nadine Vogel: Hello everyone, this is nadine vogel your one of your host for disabled lives matter we are more than a podcast we are a movement, and I am joined by my amazing co host norma stanley.
Norma: Hello everyone.
Nadine Vogel: hey hey. how are.
Norma: You i'm great great looking forward to today's show.
Nadine Vogel: I know well today's gonna be really cool because we are interviewing Joe Rhea.
Nadine Vogel: As Joe likes to say there are moments in our lives, when we look back and say that there was some defining moment, you know for for me it was when my first daughter was born with severe disabilities norma, I think, probably for you too right.
Norma: yes. yes.
Nadine Vogel: For Joe However, it was an age 14 and.
Nadine Vogel: Although life changed he never really looked back so Joe welcome to the show.
Joe Rhea: Thank you for having me it's an honor to be here i'm excited.
Nadine Vogel: Absolutely, so I left everybody kind of wondering age 14 well then, what the heck happened.
Joe Rhea: yeah.
Joe Rhea: I was.
Joe Rhea: Just like many boys in Olathe, Kansas a suburb or Kansas City, I played sports pretty much my whole life I loved all the sports, but unfortunately I also love football and on September 11, 1984.
Joe Rhea: I was playing football and I broke my neck and was paralyzed from the neck down. for a while.
Norma: Wow.
Nadine Vogel: So. September 11 has been an interesting date for many reasons for you. Right.
Joe Rhea: Yes, yes.
Nadine Vogel: Ooh, my gosh.
Nadine Vogel: Now. I know that you, you know you go and you present globally at conferences and things like that, and one of the things that that you say and make sure I say this correctly that you believe there are only two types of people in the world ones who fight and ones who don't.
Nadine Vogel: And you know what I I actually my so my older daughter has lots of disabilities her whole life but has been sick recently and I took that line I said so, which one, are you.
Nadine Vogel: Which one, are you so I stole that from you, I just want you to know.
Norma: Great line.
Nadine Vogel: Exactly. So if I recall correctly, after your accident, they were like yeah give it up babe, if you're not going to be walking you know running doing anything but you are one of those who fight so tell us a little bit about the story.
Joe Rhea: Sure. Well, and they came in basically two days later, and first thing they did was tell my folks exactly what happened to my neck that i'd broken My fourth and fifth vertebrae compress my fifth herniated my seventh.
Joe Rhea: I bruised and flattened my spinal cord, and that I needed to be prepared to use a wheelchair, the rest of my life.
Joe Rhea: And then they said, but the good news is is that your bones broke perfectly so we don't have to operate we're going to put you in a halo.
Joe Rhea: I had no idea what that meant until they started screwing it into my skull and I found out really quick.
Joe Rhea: You know, and I always tell people when I speak, that there was two sounds and I remember very distinctly that day my mother crying and my skull cracking.
Nadine Vogel: oooh. oooh.
Joe Rhea: Oh, you you hear it, because they keep you awake and they just screw it right in, and you can see my scars yeah.
Nadine Vogel: Okay i'm hurting just hearing about.
Norma: Yes.
Joe Rhea: Here's The funny thing about that being a 14 year old boy they had to shave my head and I was not happy about them shaving my hair.
[Laughter.]
Nadine Vogel: That was worse than the screwing in itself.
Joe Rhea: Initially, it was. I was like, don't do that, and then I.
Joe Rhea: So yeah so I looked at my neurologist the doctor and great man, but he was a typical neurologist dry as. can be.
Norma: Yes. they are.
Joe Rhea: Nopersonality and I just looked at him when I said after done, I was kind of nauseous I said, am I going to be able to play football or baseball again not, only am I going to walk again I want to know if I was gonna play football or baseball.
Nadine Vogel: Right.
Joe Rhea: He looks right at me and he goes no he didn't say maybe said we'll see, he said no.
Nadine Vogel: yeah well there's an optimist for you.
Joe Rhea: Yeah, but it made me mad it just really ticked me off, and I just kind of made a promise right then and there that if I get an opportunity.
Joe Rhea: I was going to prove him wrong I was going to do whatever I could to make this man, eat his words and then basically seven days later, my left leg, kind of wiggled and that was the opportunity that I hoped for.
Joe Rhea: And then from there was a battle, it was a constant therapy fight rebuild going through the process so.
Nadine Vogel: Sure. but you know I don't understand and Norma I have these conversations why, when my older daughter was born, I remember, I called the N-I-C-U doctor the doctor Dr doom and gloom.
Nadine Vogel: Right, and you know and the neurologists right, I mean we've been through neurologists I like eat them for lunch, you know.
Nadine Vogel: Because they're just.
Nadine Vogel: I won't say they're awful people, but they come off as. awful people.
Norma: Very insensitive. very insensitive.
Nadine Vogel: Well, they mean well. they mean well.
Joe Rhea: They do.
Nadine Vogel: So you have obviously endured, I can only imagine but tremendous pain, emotional, physical going through all this so talk to us a little bit about that the physical and the emotional.
Joe Rhea: yeah that's a really good question oh.
Joe Rhea: physically the pain.
Joe Rhea: was really started coming back when I started getting my feeling I describe it as if you can remember growing pains in your body like in your legs just multiply that by 100 all over my body.
Norma: Wow.
Joe Rhea: It was really, really bad it was really painful and, unfortunately, it seemed like it always was the worst at night.
Joe Rhea: When I couldn't move my arms to hit the call button.
Joe Rhea: I couldn't yell out enough because it affected, my phrenic nerve to get the nurse to come in and, finally, I would cry myself to sleep and that's when they would come in and wake me up and say I have pills.
Nadine Vogel: [Laughter.] Why does that not surprise me.
Joe Rhea: Exactly. So the pain, you know as a 14 year old boy you just kind of deal with it, but uh emotionally is what was probably the hardest for me.
Joe Rhea: I was really heartbroken what happened to me and, unfortunately, you know my folks did the best that they can, but my mom married a real cowboy he's a cattleman roped.
Joe Rhea: did all that and his his whole mentality was we're not going to talk about it that's old news, you need to suck it up move on and get over it, and that was kind of how I lived at home for the next.
Joe Rhea: Five years, and so I just white knuckle balled with my emotions and really didn't even get help for about 10 years. emotionally.
Norma: I was going to ask you about that, with your parents and you know because that's part of I know I feel my daughter's pain is, it seems to me, and I was going to ask you how did your parents handle that so how'd your mom, kind of maneuver that whole thing between your dad and you.
Nadine Vogel: yeah that must have been hard for her.
Norma: That must have been challenging.
Joe Rhea: It was really hard for her.
Joe Rhea: Because I think she would have put me in therapy, but I think obviously she wanted to follow her husband's lead and you know.
Joe Rhea: here's the double edged sword of that mentality, it really helped me physically because they pushed me so hard.
Joe Rhea: But it destroyed me emotionally, at the same time, so I was getting better physically doing things, above and beyond that what they thought possible and internally, I was really dying inside I was so heartbroken it manifested as anger.
Joe Rhea: I was mad.
Joe Rhea: At everything and everyone.
Joe Rhea: And it really came out when I uh.
Joe Rhea: I made the tennis team, two years after my accident.
Nadine Vogel: Oh wow.
Joe Rhea: Even though I could barely hold the racket but I was able to do it, and I even won tem matches and lost two yeah I was pretty good.
Joe Rhea: On the JV.
Nadine Vogel: Oh my God, you're like Superman. [Laughter.]
Norma: Awesome.
Joe Rhea: I was a really good athlete but anytime I lost it wasn't because I lost it was because of the injury and I would break my rackets and throw my rackets embarrass myself, but I didn't know any different I didn't have somebody to explain, you know it's okay to be mad.
Nadine Vogel: Right you didn't have the coping skills.
Joe Rhea. Exactly.
Nadine Vogel: Yeah. So, so when you think about this, you know I mean obviously both both of those right the injury itself, and then the follow up obviously changes you as a person right and it changes your perspective on just about everything.
Joe Rhea: Yes.
Nadine Vogel: So when how and when did kind of that that pivot happened for you.
Joe Rhea: Yeah. Uh I 24 I had moved to Vail, Colorado to be a ski bum and I thought moving out there would fix everything and it didn't I had a.
Joe Rhea: pretty much my rock bottom moment I was living with my roommate, who was a good friend of mine, for a long for many years, his mom had died of cancer The night before and he was going to go home to see her and.
Joe Rhea: He went to go pick up some groceries for us before he left and at that particular time, I guess, I was drinking vitamin D milk and he bought 2%.
Joe Rhea: I laid into him. I so angry and upset and pissed off that he would do that and how stupid, could he be and.
Joe Rhea: And then I went down my room and I cried my eyes out because I didn't want to be that person I wasn't this person not a mean person, and that was my breaking point so I said I called up and said I need help, I can't I can't do this anymore.
Nadine Vogel: And so.
Nadine Vogel: From that point forward what was that what was the process what you know, obviously there's physical recovery and there's emotional recovery right.
Nadine Vogel: So, what was the process and recovery for that piece different versus the physical.
Joe Rhea: Well, physically i'd already plateaued I pretty much had gotten what I was going to gain emotionally, it was then starting to see a therapist getting on an antidepressant.
Joe Rhea: learning how to cope, a little bit better with what I was dealing with in my anger and it really helped me a lot to get on an antidepressant at that particular time, I was.
Joe Rhea: Again I didn't know that it would help, but once I got on it, it was just amazing for me at the time.
Nadine Vogel: The world kind of opens up right.
Joe Rhea: It did absolutely.
Norma: You know it's important that you recognized that there was something that you didn't want to hold on to that you need to talk to somebody and that.
Norma: You know process that through because so many people don't admit there's something going on, when they're always angry and something is not who they really they really are it over to do, and they don't know who to turn to.
Joe Rhea: Exactly.
Norma: it's a lot as a 24 year old to know that you needed help.
Nadine Vogel: Right.
Joe Rhea: Yeah it took a lot of courage for me to admit that.
Joe Rhea: And I you know I.
Joe Rhea: like to say that hey I just can't do this on my own anymore. So.
Nadine Vogel: Right, and how did that change your relationship if it did with with your mom with her husband.
Joe Rhea: Ah, probably not much because I was living in another state, so they didn't really get the benefit of seeing me but.
Nadine Vogel: Right.
Joe Rhea: You know my mom and I were close enough to where we talked a couple times a week but.
Nadine Vogel: Awe, that's good.
Joe Rhea: Yeah it was just from that perspective I mean I was, I think I understood more what she was going through.
Nadine Vogel: Um, hmm.
Joe Rhea: and how hard it was on her because you know, while I was the one physically going through, but I think she was hurt even more mentally than I did.
Nadine Vogel: Right right. Absolutely you know, one of the things that's interesting for me is you know you're an athlete like you said right, so you know you play golf you ski you play tennis you I mean every sport imaginable.
Nadine Vogel: Was it ever even an inkling for your thought that you would continue to play sports but do it as a para athlete you know, like a Paralympic sport versus mainstream.
Joe Rhea: yeah I actually went to the United States Olympic facility in Colorado and wanted to try to be a skier but basically they deemed that.
Joe Rhea: Only my right arm was disabled enough to compete, so that I would have to not use my right arm against able bodied athletes who everything else was like an amputee.
Joe Rhea: really strong everything part of their and I here I am they had a spinalcord injury so everything was still affected, I had quadriparesis.
Joe Rhea: A weakness in all four limbs, but that that was what they deemed so I knew I couldn't compete against in that in that field but yeah I thought. about it.
Nadine Vogel: yeah because I think that that's also kind of a defining moment right, how do I continue if folks aren't an athlete before they get injured, I think it's probably different like for me, you know I tried to be an athlete but i'm not.
Nadine Vogel: I wonder if, because you were an athlete before you had that strengthen you, you have you know I think you had so many of those physical you know mental qualities that you just had to pull out. Which is in a way.
Joe Rhea: It defintely helped.
Joe Rhea: That definitely helped.
Joe Rhea: That I was, I was driven. motivated.
Joe Rhea: Competitive really competitive and just to kind of prove everybody wrong.
Nadine Vogel: yeah I love it I love people that try to.
Nadine Vogel: Prove everyone wrong and are successful not just try.
Nadine Vogel: Successful so i'm curious Have you ever gotten back at those Doc initial doctors and folks that said no never huh.
Joe Rhea: No that was so long ago, but it would have been funny to do that.
Nadine Vogel: Well, you know what I liked the reason I asked the question.
Nadine Vogel: Is because my own personal situation with my daughter, they said she'd never walk talk all these different things she spent three months in intensive care when she was born and I made sure that they not only got photos but they got to meet her.
Nadine Vogel: As a young adult who is you know walking talking applying to colleges doing all these things, and for me it was more about not hey look, you were wrong or hey Look how great she is but.
Nadine Vogel: I want you to change your perspective.
Norma: Absolutely.
Nadine Vogel: I want you to think differently and not be so doom and gloom yes, sometimes that is the outcome.
Nadine Vogel: But, can you imagine.
Nadine Vogel: If you really think like she for you, Joe where you have a completely different mental attitude right that you're going to make it, no matter what, if they could potentially embrace that.
Joe Rhea: Sure sure.
Norma: Well it's so important and the way they break it parents, I think it should really think a little differently about how they give them a little hope, I mean don't come, I mean you know mix reality, with the hope. In some way, in my opinion.
Nadine Vogel: Right cause otherwise they're like you know I find that it's like a self.
Nadine Vogel: fulfilling prophecy for them see I told you you would never walk.
Joe Rhea: You know I.
Joe Rhea: You know, I think that i've done a lot of thinking about this.
Joe Rhea: And they want to give you the worst case scenario to kind of cover their butts if you. know what I mean.
Joe Rhea: So if you don't get any any better than they say look I told you, but if you gain then they're like that's just you know lucky you you've got more than we thought.
Nadine Vogel: Yeah.
Joe Rhea: And yeah I was.
Nadine Vogel: There got to be a balance, I don't know.
Joe Rhea: I agree.
Norma: I agree there should be a balance of some kind, but.
Nadine Vogel: I think they need some special mental health training themselves.
Norma: I agree with you. You know. for our children. You want to give them.
Norma: Some idea that you know that you have to work hard to get them to where they need to be the same time. Let them think.
Nadine Vogel: Right right.
Norma: That there is a possibility.
Nadine Vogel: Absolutely. Joe you were 14 I mean you were you were in that formative stage right.
Nadine Vogel: yeah especially a boy athlete oh my gosh um well, so we need to go to a very short commercial break, but when we come back, we will come back with Joe Rhea and have some more really cool stories we'll be right back everybody.
Voiceover: And now it's time for a commercial break.
[COMMERCIAL]
If you're familiar with Springboard Consulting Disability Matters Events. You won't want to miss out on the 2022 Disability Matters Asia-Pacific Conference & Awards Live-Stream. It's happening November 9, and it's being hosted by Manulife. So, don't miss out! Visit www.consultspringboard.com for more information. Again, that's www.consultspringboard.com for more information.
Voiceover: And now back to our show.
Nadine Vogel: Hello everyone, this is nadine vogel and I am joined by norma stanley your co host of disabled lives matter hey norma.
Norma: Hey.
Nadine Vogel: This has been such a cool show talking with Joe Rhea.
Norma: Yeah.
Nadine Vogel: Joe you you're you just one amazing guy for a lot of different reasons, but especially because you have really made it your mission in life, to make a difference in other people's lives right.
Nadine Vogel: and
Joe Rhea: Yes.
Nadine Vogel: that's you know talk about paying it forward right, and I know that you do that, in a variety of ways, including you know speaking and so forth, so i'm wondering if you could share with our audience all the different ways, you do that.
Joe Rhea: Sure um well I started out just as a waiter server for many years, this doing through sharing my story someone suggested I get into public speaking.
Joe Rhea: And I really didn't know how to do that I got involved with the Foundation called Think First, which is a brain and spinal cord injury prevention foundation.
Joe Rhea: Speaking to kids K through 12 within about a month, they made me their lead speaker and I did that for about nine years where I spoke to about.
Joe Rhea: 150 times a year to kids in Kansas city K through 12 and then through that I developed a collegiate program for athletes and you took what I learned and called program Bars, Cars and Catastrophes, this is pre Uber and Lyft.
Nadine Vogel: {Laughter.} I love it. Was it bars, cars and catastrophes right?
Joe Rhea: yeah
Naidne Vogel: I love it.
Joe Rhea: yeah.
Joe Rhea: We have another. 16 to 25 year olds suffer brain and spinal cord injuries more than than any other age group, and they do most often in car crashes.
Joe Rhea: And then you factor in alcohol and then there's falls and diving and fighting all the thing the young people do so I just developed that Program.
Joe Rhea: And then through there I started getting into doing programs on mental health and overcoming adversity and.
Joe Rhea: i've done that i've looked into corporations and goal setting and peak performance and then during covid which kind of killed everything.
Joe Rhea: I was able to finish my book and publish my book called When Life Knocks the Hell Out of You, Beat the Odds, and so I was fortunate to get that done that only took me about 20 years to finish.
Nadine Vogel: Okay, so yeah just a little time so let's let's kind of dissect we haven't you have a little time so let's dissect each one so i'm going to start with the book and we'll work back.
Norma: Yeah.
Nadine Vogel: Let's start with the book so When Life Knocks the Hell Out of You.
Joe Rhea: Beat the Odds
Nadine Vogel: Beat the Odds. So tell us just give us an idea, because I, I suspect, people are going to want to order this book and i'm going to have you tell everyone how to order the book so let's talk about the book sure.
Joe Rhea: Sure um.
Joe Rhea: Believe it or not, I started handwriting the book in 1998 to set because I had so many people say you should write a book, you should write a book and i'm like.
Joe Rhea: i'm 28 years old, I mean or how how much of a story do I have, but apparently they thought I had a good story, so I started writing what i'd gone through and.
Joe Rhea: It sits there for a while, then you put it on you know, a word processor, and then it's not a computer and then the right anyway.
Joe Rhea: Finally, I met somebody That was a publisher here in Kansas city and she said, you know send me a chapter, you know, everybody thinks they have a book and.
Joe Rhea: I was like Okay, I sent her, the whole thing anyways she gets back she goes, this is really, really good and i'm really shocked I wasn't expecting much, and so she was able to help me get it published but it's really the.
Joe Rhea: The journey of my emotional physical recovery from 14 through the end of college to Vail and ultimately discovering what was my really the purpose for.
Joe Rhea: Why, I stay alive and what I wanted to do when you know, since I couldn't be a professional athlete or achieve those dreams and goals, which are really important to me.
Joe Rhea: What was the reason and, ultimately, it really was I always knew that I could be a father and that the last chapter of the book is called Molly it's about my daughter.
Joe Rhea: And the day she was born I knew that it was no no longer about me it was about her, and it was just the best thing ever.
Nadine Vogel: that's that's really fabulous so before we go into my other questions, how can folks get the book.
Joe Rhea: Sure it's currently on Amazon, you know just plug in the title When Life Knocks the Hell Out of You and it'll pull right up there's the book format, you can do a kindle unfortunately it's not in.
Joe Rhea: audio yet that's my next goal.
Joe Rhea: You go to my website Joe Rhea, excuse me, joerhea.com.
Nadine Vogel: Okay.
Joe Rhea: You can order it through that as well too.
Nadine Vogel: Excellent Okay, because I know our listeners are going to want to immediately want to do that so let's work backwards, then i'm going to start with Think First so tell us a little bit about Think First because it sounds really cool for kids.
Joe Rhea: Sure, it is the national program it's a nonprofit it's I think it's probably in almost all 50 states it's like I said it's a national brain and spinal cord injury prevention program used to be called Heads Up.
Joe Rhea: And then they changed it to Think First and they go to K through 12 and they really what they do is they have a lead speaker who comes in and set a tone.
Joe Rhea: Then they bring somebody who's in a wheelchair he's been paralyzed somebody who has a brain injury they're called voices and injury prevention.
Joe Rhea: And they share their story about what they've gone through, because ultimately brain and spinal cord injuries are preventable on in most cases, from wearing a seatbelt or speeding drinking and driving making good choices thinking first about what you do.
Joe Rhea: Should I dive into this pool before I jump in.
Joe Rhea: You know check the deep end and.
Joe Rhea: You know, make sure it's the it's the deep end versus the shallow end or before I do or dive into a creek Maybe I should jump in feet first and make sure it's not two feet deep instead of 10 feet So these are things and I loved it I just after nine years and 150 times a year.
Joe Rhea: I just wanted to do something else.
Nadine Vogel: yeah, no, no, but I think it's great and so, for those of us, you know for the listeners out there, they have young children.
Nadine Vogel: Um.
Nadine Vogel: That are having these kinds of experiences that I just I wanted them to know about Think First absolutely so now let's go to bars cars and catastrophes I just I just love the name.
Norma: Great title.
Nadine Vogel: The name, you know when I when I hear that name I just I think of fraternity parties.
Joe Rhea: Exactly. that's kind of what I thought of you know, but ultimately, I really spoke mainly to college athletes.
Joe Rhea: They think they're invincible you know they're in shape, you know they're as strong as they can be they finally get the weekend off to go party and then they really.
Joe Rhea: You know party hard, then you find out a lot of them have are depressed so they drink and do other things.
Joe Rhea: So I just really wanted to give them some really good information and some ideas and share my personal story.
Joe Rhea: about what happened to me, and so that they can make good choices in their life and understand that, even though they think they're strong as they can be that they're still vulnerable.
Nadine Vogel: Yeah.
Joe Rhea: and to think about the their decisions, because often they can be catastrophic in nature and that decision doesn't just affect them does it, it affects their family everyone they love and if you become disabled it affects everyone in your in your path for the rest of your life.
Nadine Vogel: Right, they also could use that Think First.
Joe Rhea: Exactly. You know that was the tie in.
Nadine Vogel: yeah no absolutely.
Joe Rhea: I just wasn't able to call it Think First.
Nadine Vogel: Think second.
Joe Rhea: Exactly. Think again.
Nadine Vogel: Think again. Oh, I like that one think again there you go um so you know it's it's interesting, I think that you know mental health issues are the most stigmatized of all disability types in our society, and I find that.
Nadine Vogel: college students athletes, you know they even more so they are right and they're hiding out.
Nadine Vogel: Any thoughts or suggestions you know, to help these folks it's just they're at they're at these crucial stages in their lives, and they just need to be able to acknowledge what they're experiencing.
Nadine Vogel: And you know whether it's the College, the university the family, people are just pushing it down bury it.
Joe Rhea: yes.
Joe Rhea: yeah i'm sure I thought a lot about this I mean for, especially young boys first it's suppress it, you know suck it up, but even for girls nowadays I think we're afraid to admit that we need help.
Joe Rhea: And then we can't handle this on their own, that if we actually go and say hey I can't do this it's a sign of weakness but asking for help, really is a sign of strength, it takes a lot of courage to admit.
Joe Rhea: That you need help and it's okay to do that, I mean for me I wasn't getting any joy out of the things that I loved and that was a telltale sign.
Joe Rhea: I was angry all the time was another sign that I didn't know this at the time I didn't know that my anger was a mask for depression.
Joe Rhea: And so I had to learn these things, and so really I speak about these things to students and college athletes and.
Joe Rhea: And I get them to think about if they're in the audience and they're feeling that they're having these thoughts, you know they know if they're struggling.
Joe Rhea: That it's okay to go to your coach or and say hey you know I think I need to talk to somebody because, believe me when I say this.
Joe Rhea: The first time I saw purpose and she said to me it's okay to feel the way you feel.
Joe Rhea: I lost it I literally started bawling because I hadn't heard that it was like a huge weight was lifted off my shoulders, that it was okay to be pissed off at the world about what happened to me.
Joe Rhea: But with that said what she made me realize and i'm glad she did it's not okay to allow those emotions to run your life and they were running my life, and they were making my life very difficult and unsatisfying, and so I was glad I went and asked for help.
Nadine Vogel: So how do you how do you how do you do that, how do you, what do you have to do to those emotions don't run your life.
Joe Rhea: well.
Joe Rhea: Its first acknowledging them acknowledging that they are, and I mean we have to be brave enough to look at ourselves and say.
Joe Rhea: Am I doing the things that I love I'm I getting up and going to you know out with my friends, do I enjoy these things, am I staying home all the time, do I want to sleep all the time.
Joe Rhea: These are telltale signs, but you it's taking the first step it's making decision that I need to go and ask somebody to help me through this process because what I learned is that if you're depressed and I mean clinically.
Joe Rhea: depressed it's not just you can get over it it's a chemical imbalance, it really is, I mean, and believe me when I say this depression can be more debilitating then paralysis.
Joe Rhea: Now, when i'm you know paralyzed if you're happy you'll get up and go do wheelchair basketball you pay attention you'll do these things, because you're happy, but if you're depressed you don't want to do anything and there's times, where I never wanted to get out of bed.
Nadine Vogel: Go ahead norma.
Norma: No.
Norma: I've been through that and didn't even realize it and.
Norma: never really wanted to dress really I want to sleep all the time I didn't realize that's what it was.
Norma: And I was in my you know.
Norma: Early 50s 40s time.
Norma: So yeah you know I finally was able to work my way through it. I didn't know I needed help or how to get help it just kind of went away, but once it went away I realized, there was a period of time, where I was not myself it wasn't me didn't I didn't know it.
Nadine Vogel: Right yeah.
Joe Rhea: Go ahead i'm sorry.
Nadine Vogel: No, no, please go ahead.
Joe Rhea: I was going to say in that aspect of feeling tired all the time that's another sign as well, especially for young people, you shouldn't feel tired all the time.
Nadine Vogel: Right.
Nadine Vogel: Right, but you.
Nadine Vogel: You made a point earlier about that it's a chemical imbalance.
Nadine Vogel: Yes, say, and you also made a point earlier about you know, taking antidepressants and I think that in and of itself is stigmatized because people don't understand it's a chemical imbalance.
Joe Rhea: Correct.
Nadine Vogel: Right right and that you sometimes need to treat a chemical imbalance with chemicals I mean I hate to say it, that.
Joe Rhea: I say it's like a vitamin for your brain.
Joe Rhea: In essence, it really is your brains depleted of serotonin you can't put that you can't build it up on your own if you're clinically depressed and again, you have to be diagnosed.
Joe Rhea: You know can't just make you have to go see a therapist and let them diagnose you, but if you are then suggesting i'll talk to them about an antidepressant may not be for you, but it might be and.
Joe Rhea: You know, trust me when I say when you start feeling better again you'll notice, I mean they said it would take three weeks for me to feel it, I felt it in four days.
Joe Rhea: I mean, I really woke up and I was like yeah I feel happy.
Nadine Vogel: And it wasn't it.
Joe Rhea: wasn't high like i'm doing. drugs.
Joe Rhea: I literally felt happy and I hadn't felt like that in a long time and my roommate was like, you're weird.
Nadine Vogel: Well, but I also think you know you may I hadn't heard this vocalized before, but you said that you know the mental health of depression can be more debilitating than the physical disability.
Joe Rhea: Absolutely, it can. yeah.
Nadine Vogel: People don't people don't realize it they don't accept it, and again it speaks to the stigma right because people to your point earlier, I think you get over it, you know, but they see someone in a wheelchair, and they won't say oh we'll just you know get up out of the Chair get.
Nadine Vogel: get over it right.
Nadine Vogel: But.
Nadine Vogel: For you, I mean oh my gosh you you've experienced both on many levels and, obviously, you are the epitome of the camp that these are the people that choose to fight it.
Nadine Vogel: And not fight.
Nadine Vogel: angry fight but fight for themselves, fight for, to have their life back. I guess i'll say
Joe Rhea: Yes, yes.
Nadine Vogel: You know and and, I suspect, because of the fighter that you are had you not gotten the physical piece back, and you, you are using a wheelchair or crutches you still would be the guy you are today. Because you're affecting so many.
Joe Rhea: I think so. well, I definitely would have been a fighter.
Joe Rhea: yeah I mean the you know there's for the longest time, one of the things that really was difficult for me, and this is my bane of my existence for a while, is.
Joe Rhea: To look at me now you would never know, I was once a quadriplegic both good and bad you know you don't know it, but you don't, then you don't know what what i've gone through to get to this point.
Joe Rhea: I see somebody in a wheelchair playing wheelchair tennis and you think man that is amazing look at that person.
Joe Rhea: You see me playing tennis i'm just some guy playing tennis right and that was hard for me, because I, you know, and then I would feel bad because I wanted recognition and that made me feel bad about myself that I even thought like that.
Joe Rhea: I saw guy win an ESPY his name is Kevin everett of the buffalo bills he broke his neck playing football was paralyzed was all over ESPN a year later, he was one Yes, he walked on stage.
Joe Rhea: Every professional athlete you could think of stood up and was crying and applauding, and here I was angry and jealous, and then I felt so bad that I was jealous of this man of this well deserved ESPY.
Joe Rhea: That made me feel bad about myself, because he deserved it, but I wanted that and these are the things that would go through my head and torment me and then here it was two years, where I won an honorary ESPY which was pretty cool.
Norma: Awesome.
Nadine Vogel: we're gonna get you a T shirt says, I once was.
Joe Rhea: I actually had a T shirt made which says former quadriplegic.
Nadine Vogel: See there you go.
Joe Rhea: Yeah, I did.
Nadine Vogel: There you go.
Joe Rhea: I don't know if it's vanity or not. so.
Nadine Vogel: You know what it does it doesn't matter, because at the end of the day it was your experience.
Norma: Nice.
Nadine Vogel: It was your life experience and it's made you who you are today.
Joe Rhea: Absolutely.
Nadine Vogel: We can't deny that right we can't we and we shouldn't we shouldn't forget that I think that that's really important and it's probably a great note to end on since oh my gosh we are out of time, I never understand how 30 minutes flies the way it does.
Nadine Vogel: But um. Joe Thank you so very much. Again.
Joe Rhea: Thank you for having me.
Nadine Vogel: Again, JoeRhea.com right to.
Joe Rhea: R-H-E-A. It's actually Joe Rhee-ah.
Nadine Vogel: Rhee-ah.
Nadine Vogel: I can't, wow.
Nadine Vogel: Rhee-ah, I'm sorry R-H-E-A.
Joe Rhea: Now, you're not the first one that's butchered it.
Nadine Vogel: But shame on me becuase I asked and I still butchered it.
Nadine Vogel: But this would be the website to get your book, maybe if there's someone's out there interested in booking you as a speaker so please Thank you so much for joining us today.
Nadine Vogel: norma as always.
Norma: Can't wait to get that book. Yeah great great show Thank you so much.
Joe Rhea: Thank you for having me.
Nadine Vogel: Thank you for joining us on another episode of disabled lives matter more than just a podcast we are a movement bye everybody.
Norma: be blessed.
Joe Rhea: bye.
Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!
Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.
Thursday Sep 08, 2022
Thursday Sep 08, 2022
Season 02, Episode 20
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Elaine Katz
Intro: [Music playing in background] Disabled Lives Matter... here we go!
Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.
Nadine Vogel: Hello everyone and welcome to another amazing episode of disabled lives matter we are more than a podcast we are a movement and, of course, as always, Norma Stanley my amazing co host is joining me.
Nadine Vogel: Morning norma.
Norma: Good morning everybody. Great to see you.
Nadine Vogel: yeah so norma, we have an exciting show today, because we are going to be speaking with Elaine Katz. hey Elaine.
Elaine Katz: hey nice to be with you.
Nadine Vogel: i'm so glad you joined us so i've known elaine a really long time not they were old we just know each other a long time.
[Laughter.]
Nadine Vogel: She oversees Kessler Foundation's comprehensive grant making program and its communications department, so if that doesn't sound like a big enough job.
Nadine Vogel: Just to put it in perspective during her tenure at the at the foundation I think Elaine you've brought in you've had you've had like almost $50 million awarded. For the program.
Elaine Katz: Grants we've given out. yes.
Nadine Vogel: Oh my Gosh.
Norma: Yes, great.
Nadine Vogel: Right, I mean yeah so she's a force to be reckoned with so.
Nadine Vogel: let's get started. so Elain there are so many questions I have for you, oh my gosh um Well, first of all, just for those who are not familiar with Kessler, can you just give a little brief about what Kessler is and does.
Elaine Katz: Sure, so it's great to be with both of you.
Elaine Katz: And Kessler Foundation changes the lives of people with disabilities through medical rehabilitation research and funding our employment initiatives, our research works in the area of cognition and mobility for individuals with disabilities such a stroke and traumatic brain injury. muscular sclerosis.
Elaine Katz: And what we try to do is improve daily functioning and independence and we just by doing that we test new interventions and gather data which can improve the treatment, I head our Center for grant making as nadine mentioned.
Elaine Katz: we've awarded more than $50 million, or, as we say invested more than $50 million in organizations that.
Elaine Katz: work on, employment for people with disabilities we've done training grants we've done job creation, both in New Jersey, where we're based and nationally.
Elaine Katz: And we hope, by improving the participation rates of people with disabilities in competitive integrated employment and that's really key to us, and that by leveraging our dollars and human capital, we can really create some new ideas and models to move the needle forward.
Nadine Vogel: So I love that you said competitive.
Norma: Yes.
Nadine Vogel: integrated employment because you know, not all employment is created equal let's put it that way.
Nadine Vogel: So, but before I because, again, I have some questions but let's just start with that so when you say competitive and integrate let's be really clear what that means versus just let's hire people with disabilities.
Elaine Katz: Well, what we're trying to look at and what we hope for is yes, you may get an entry job.
Elaine Katz: That pays minimum wage which that's the competitive part that you're in the competitive workforce, but that also it's a position where you can move that you're not stuck in that position for a very long time, even if you're starting at a fast food.
Elaine Katz: position then hopefully you can move either within that organization or you can move to another position.
Elaine Katz: Working with people without disabilities that's the integrated part side by side and have the same opportunities training onboarding just like everybody else.
Elaine Katz: And I think it's really important that you know people with disabilities have the choice to move into jobs that they're interested in, we often don't see people with disabilities being asked what would you like to do where would you like to work.
Nadine Vogel: Absolutely and I think that you know, a big impact to this to it well for everybody, but especially people with disabilities is the everlasting covid.
Nadine Vogel: It just won't go away and specifically what i'd love to focus on.
Nadine Vogel: Is long covid right so long haul covid is a real thing.
Nadine Vogel: I believe that some of the aspects of it are protected now under the A-D-A and its impact, so therefore it's impacting employment can you talk about that a little bit.
Elaine Katz: Sure, so you know, in the beginning of the pandemic, the American University Centers on Disability, which is a A-U-C-D had estimated at that time they're probably 105 million Americans.
Elaine Katz: Who were going to be affected by covid either with disabilities.
Elaine Katz: or older Americans adults and what actually also fill in that group that people don't realize it's all the caretakers you know all the caretakers and families.
Elaine Katz: That were in shared living situations where people with disabilities were also really at high risk.
Elaine Katz: And we saw that really the highest proportion of that group with the initial hospitalization especially individuals from diverse communities, and you know as that progressed.
Elaine Katz: Now we've been in the pandemic with vaccines and everything else but it's a lot longer I think than anybody ever predicted.
Elaine Katz: And we're seeing the emergence of long covid or long haul covid whatever you want to call it, and really it's an umbrella term for all kinds of physical and mental disabilities.
Elaine Katz: health issues that happen after four months, so you may recover and then you know, four months, six months eight months later it's still kind of lingering and you know, according to the CDC.
Elaine Katz: They looked at it last November and there's at that time there were like three to 5 million Americans so roughly one in five Americans over. eighteen.
Elaine Katz: were affected by this, so you know it's really a real issue and it's a real issue being brought to the disability community.
Elaine Katz: Because there are questions, as you mentioned nadine. we just celebrated the 32nd anniversary Americans with disabilities, which you know that legislation was created to protect people with disabilities and all kinds of situations, but it's not really clear right now.
Elaine Katz: If covid is covered, although you know recently the Department of Justice and also health and human services.
Elaine Katz: came out with some guidelines that long covid long haul covid is covered under the titles of the A-D-A so you know it's very, very confusing and it's confusing to employers it's confusing to people.
Elaine Katz: And it's real moment for you know disability advocates who now all of a sudden have this whole new group of people who really are people with disabilities, who never consider themselves having disabilities.
Nadine Vogel: Right. right.
Elaine Katz: Now, disability can happen to anybody at any time.
Nadine Vogel: Right and and The thing is, if I thought about that right is and norma, you and I talk all the time that disabilities can happen to anybody at any time, but now I think people are start trying to believe it.
Norma: I think so. They have no choice but to believe it now.
Nadine Vogel: Right. they weren't believing us too much before so so as a result of covid some folks have been saying that you know there's there's tremendous opportunities for employment because of this remote work telecommuting.
Nadine Vogel: I'm mixed you know I thought and norma I would love to see what you think you know I always thought yes wow we've really come into our own now right but i'm finding that there are many organizations, I spoke with one yesterday.
Nadine Vogel: That said, they're looking to hire two people with disabilities one's part time one's full time they can't be remote, they have to be in the office and I was like really what, why are we back to that again.
Norma: Yeah.
Nadine Vogel: So Elaine I mean what are you seeing, with this.
Elaine Katz: Well, you know we did a survey of employees and people who are working with disabilities in.
Elaine Katz: 2015 and at that time you know we really asked a lot of questions and found people were just striving to work, so we know people with disabilities really want to work.
Elaine Katz: And they're overcoming barriers by training and all kinds of things education that they would go to work and in 2017 we did a supervisor study and there was.
Elaine Katz: You know nothing like remote work and at that time, we found part of that study that was difficult to ask for accommodations and get accommodations.
Norma: Yup.
Elaine Katz: But you know still people with disabilities want to work and employers wanted to hire them now, we have this whole beginning of the pandemic and everybody was remote so.
Elaine Katz: The idea that employers could make these accommodations for everybody, and we always knew they were doing standing desk and I have to computer screen, I mean.
Elaine Katz: they're always doing some sort of extra things for employees who asked, but now you know they actually help people set up.
Elaine Katz: computer systems at home and cameras and phone system, some of them gave money towards that so.
Elaine Katz: We knew remote work could be an equalizer for everybody, but now, as you mentioned we're seeing people go back to the office so in including my own office, where you know we have four days a week in, and we have one day a week we could work remotely but.
Elaine Katz: You know, so we saw when you work remotely that you know the transportation was minimized people who needed breaks during the day could easily take it.
Elaine Katz: But now that employers are asking everybody to come in, you know what's going to happen and let's be clear remote work wasn't for everybody, but.
Nadine Vogel: Right.
Elaine Katz: it's really mean for people with disabilities, because all of a sudden if you're working I mean forget the fact that want you in the office but.
Elaine Katz: If.
Elaine Katz: The opportunity to work remote and you're one day, and most of your team is in right or you know how are they going to evaluate your performance are you going to be seen as a less. person.
Elaine Katz: Working because you're not visible there's a great quote quote that came across by a from an Australian report that says.
Elaine Katz: presence without participation can be more isolating the no presence at all so.
Nadine Vogel: I agree.
Elaine Katz: You could be physically present without being included and that's what you know we're really you know are you going to get promoted are you going to get the right projects.
Elaine Katz: And it's you know now we know we could all after accommodations but now the question Now the question is going to be, do you have to be in the office and why are employers, insisting on it, which you know that's still to be determined, I think.
Norma: Isn't there a big issue with people finding gaps to begin with, so you would think that they would look towards the community of people with disabilities to try to fill some of those gaps in employment and Labor shortages, that they are finding in so many different industries.
Elaine Katz: So that's that's kind of the question is that.
Elaine Katz: You know, employers want to find people they want they're looking at people who've been formally incarcerated returning citizens they're also looking at people with disabilities all kinds of population they never considered before.
Elaine Katz: But they don't often know where to find the people where to get the people.
Elaine Katz: We recently did a project with the SHRM Foundation, which is the philanthropic arm of the Society for Human Resource Managers.
Elaine Katz: And what that is is really creating a certification calling Employing Abilities at Work, and that was developed with global disability inclusion and we funded the project and what it enables employers to do is have a place to, and it's free you don't have to be a member of SHRM.
Elaine Katz: And you can go there and take this 10 hour course with seven modules and really learn how to onboard people with disabilities.
Elaine Katz: And it really helps employers and those in HR really get some training.
Elaine Katz: On a very individual basis, and also but, more importantly, what I think it's going to be good for is people in the field, so what we haven't talked about is.
Elaine Katz: Those nonprofit agencies who place people with disabilities oftentimes they don't know how to work with employers.
Elaine Katz: They don't always have the means to hire consultants, like nadine, to to work with them to work with employers, so this free platform will allow them to go in and really understand how a corporation on boards people hires people, so I hope they take advantage of this as well.
Nadine Vogel: Well that's it that's a great spot for us that we are going to move to commercial break, so, nobody leave everybody stay tuned we'll be right back with my co host Normal Stanley and I guess Elaine Katz, be right back.
Voiceover: And now it's time for a commercial break.
[COMMERCIAL]
If you're familiar with Springboard Consulting Disability Matters Events. You won't want to miss out on the 2022 Disability Matters Asia-Pacific Conference & Awards Live-Stream. It's happening November 9 & 10, and it's being hosted by Manulife. So, don't miss out! Visit www.consultspringboard.com for more information. Again, that's www.consultspringboard.com for more information.
Voiceover: And now back to our show.
Nadine Vogel: Hello everyone welcome back to disabled lives matter, this is Nadine Vogel your co host along with Norma Stanley.
Nadine Vogel: And today's guest is Elaine Katz from Kessler Foundation so Elaine you know it's interesting before before break what you were talking about with you know, providing training and giving guidance.
Nadine Vogel: What, we keep hearing from companies is flexibility it's all about flexibility we're completely flexible but we're really not.
Nadine Vogel: So, and I think you know, for what you said earlier and I hear it all the time, is that people with disabilities, you know.
Nadine Vogel: have always been hesitant to disclose because of you know, have they'll be treated they'd be the first to go, so now to your point before about if they're the ones asking to work from home and everybody else's in the office you know it just further can isolate them.
Nadine Vogel: So what is this definition, I may we have a new definition of flexibility, I don't know what do you think.
Elaine Katz: I think we do have a new flexibility of a new definition of flexibility, I also think that flexibility is really here to stay, I mean I just see that, on my own staff and people working at Kessler Foundation, with or without disabilities we're just named as one of the best places to work.
[Yay!]
Elaine Katz: and I'll find out our ranking in the fall, but what part of it, you know some of the comments we heard is that, yes, you know.
Elaine Katz: The place is clean and people were good during covid and all those kinds of nice management stuff but still some of the comments were yes we'd still like flexibility so.
Elaine Katz: I you know I think the mindset coming out of covid and you see the great resignation too I mean people, all of a sudden people are up ending their lives they're deciding to move to new positions, which is a whole nother discussion, we can have nothing at nonprofit agencies.
Nadine Vogel: Yes.
Elaine Katz: But I think people really want flexibility in their lives, and I think it's spilling over not only their personal lives but into their business lives, and I think it's still to be determined what's the definition right now we see an employer by employer.
Nadine Vogel: Right.
Elaine Katz: You know, and I also heard, there was an article recently and.
Elaine Katz: One of the national newspapers that talked about its regional so in some regions of the US.
Elaine Katz: or in smaller cities like Pittsburgh, people are all in our offices, but in like New York and L.A. people are still not in their offices, so it may really depend where you're living and what's the philosophy in the place you're living.
Nadine Vogel: yeah that is that I hadn't thought about it, regionally, have you norma I.
Norma: yeah that's true that's interesting.
Norma: I was in.
Norma: New York and it seemed to have more people coming back to the office than here in Georgia tell you the truth.
Nadine Vogel: Really.
Norma: Interesting. yeah.
Nadine Vogel: So that that is that is interesting, but you know this this great resignation and norma you brought this up earlier as well.
Nadine Vogel: You know I think we're seeing it in certain industries, more than others and it's not that i'm not concerned about all industries, I am but i'd like to focus on what about.
Nadine Vogel: Elaine, are we seeing this on the nonprofit side that the agencies that are serving directly serving the disability community, my concern is, I feel like we're starting to see less staff in those places, and that is a concern.
Norma: Very much so.
Elaine Katz: yeah I mean we talked about in the beginning, that they were the the direct service professionals those individuals who really have expansive work working. mainly.
Elaine Katz: With individuals with developmental disabilities can work often times 24/7 in an individual home, in a group home.
Elaine Katz: You know around the clock care they're providing and socialization they're driving people to appointments oftentimes they're working developing.
Elaine Katz: skill building so those individuals are actually more during covid a lot of them left during covid or a lot of them, you know, took a break from work and then came back, but that industry had been in a crisis before covid.
Nadine Vogel: Got it.
Elaine Katz: We saw low wages, very little training high expectations high hands on and they were trusted I mean, these are the trusted people who are working with loved ones family members.
Elaine Katz: And they really have a good deal responsibility, so you know, in the great resignation direct service professionals really you know we're leaving a lot.
Elaine Katz: mcdonald's we're paying higher wages or some other fast food chains Lowes you know all the home buildings, you know retail is just much higher fast food was much higher and people were leaving.
Elaine Katz: And these agencies when direct service provider has a service and they're connected to a nonprofit agency that agency is require getting a reimbursement from the state usually for.
Nadine Vogel: Right.
Elaine Katz: Some service delivery those rates have not increased so with inflation, the cost of running a nonprofit organization which we often don't think about the cost individually of direct service providers living with inflation.
Elaine Katz: You know, there was there were a lot of people leaving I know in New Jersey we're seeing a lot of rotating staff.
Elaine Katz: So people in other positions other vocational vocational supervisors job developers they're kind of moving to another agency, also in this time because of increased opportunities so some of the smaller agencies are losing staff to bigger service agencies.
Nadine Vogel: Do you think we're going to be able, do you think we're going to see like a consolidation, where you just you know those little nonprofits just aren't going to be able to survive and it's going to roll up to the bigger ones.
Elaine Katz: I think that happened during covid and there was always some reports of agencies closing and consolidating and with inflation everything else, I think, so I mean what covid.
Elaine Katz: You know, at least I know New Jersey and somewhat nationwide what covid really pointed out to is the nonprofit agencies serving people with disabilities.
Elaine Katz: Especially on the employment side we're not prepared to do remote services and we had provided a lot of emergency grant funding during the first year of covid and we bought a lot of computers, you would think we were buying computers for clients no we're buying equipment for staff.
Elaine Katz: The staff did not have the right kind of a computer or a camera to do a remote service delivery, you know a lot of client a lot of people with disabilities now have phones.
Elaine Katz: But you know it's hard to do a service delivery or teach something if you yourself are using the phone as well.
Nadine Vogel: Right, well, we found, I can tell you that you know at Springboard we got a lot of calls from parents working at our clients companies who said, who have children with disabilities.
Nadine Vogel: And during covid, you know the children weren't getting their physical therapy their speech therapy occupational therapy and they were trying to get the therapist to do it, you know via zoom and you know, especially with a child, with a disability, if you're not touching them, you know.
Norma: Yes. It is not the same.
Nadine Vogel: It was very, very difficult and you know my older daughter, who has disabilities was in the hospital for actually a few months, and just the nursing shortage.
Nadine Vogel: And what they were able to do, and you know it used to be they didn't like, especially if it's an adult child for the parent to like stay in the hospital room.
Nadine Vogel: They were like oh no please you know stay forever because we took some of the burden off what they had to do and it's just a little scary actually it's very scary especially in a hospital environment.
Elaine Katz: Well that's true, and then you know we talked earlier about long covid so right, you have all of these people entering a disability service delivery system that weren't there before and with staffing shortages and increasing costs and access.
Elaine Katz: You know it's hard for people to get services and then for people who already are there feel like somebody else's crowding them out in.
Elaine Katz: Some aspect, because now everybody's competing for limited services where so it's it's really going to be challenges for our health care and service delivery system, as we move forward.
Nadine Vogel: Yeah.
Nadine Vogel: It is, I want to switch gears a little bit while we still have some time to talk about your reports you put out these amazing research reports, the national trends and disability employment and i'm wondering if you could give us the latest and greatest.
Nadine Vogel: For what's what you're seeing.
Elaine Katz: Right, so our.
Elaine Katz: nTide report, which we call that for short.
Elaine Katz: it's really a joint report that's produced by Kessler Foundation and the University of New Hampshire and it comes out the first Friday of the month, which is.
Elaine Katz: Jobs Friday and it looks at numbers from the Bureau of Labor statistics in Washington.
Elaine Katz: But they're not identical to them, but it takes their statistics and merges male and female, and looks at how it affects people with disabilities and without disabilities, if you really want the latest and greatest and you just tuned in for tomorrow, because tomorrow.
Elaine Katz: I don't know when this is airing but every first Friday of the month is jobs right.
Elaine Katz: So you know, in June of this year in our report, we saw that employment really increased slightly.
Elaine Katz: From May to June for people with disabilities, but it really has been reaching an all time high you know we talked about the great reset.
Elaine Katz: resignation but during covid and continuing we have seen increased Labor participation rates of people with disabilities, why because oftentimes they were in essential jobs.
Elaine Katz: They were cashiers they were working in supermarkets and working in fast food they were delivery, so they stayed working oftentimes.
Elaine Katz: You know, over the past couple of years and, in fact, their participation rate now is almost where it was pre covid it actually it is where it was pre covid compared to when you look year over a year, with people without disabilities.
Nadine Vogel: okay well that's that's promising.
Norma: Wow.
Elaine Katz: Yes. It's very promising.
Norma. And moving in the right direction.
Nadine Vogel: in the right direction and and and are there, certain industries certain job types like are we seeing any trends there.
Elaine Katz: You know, we don't look at that type of data.
Elaine Katz: So I really can't answer that question but.
Elaine Katz: What we do think is that part of the high participation is also because of inflation.
Elaine Katz: We suspect, because you know it's encouraging everybody in a family who can work can work, whether you can work part time or full time you know anything contributed to income will help when you know you have high inflation.
Nadine Vogel: yeah absolutely and what about we had talked to a couple years ago about you know people with disabilities in college.
Nadine Vogel: And i'm wondering if you feel that covid has had an impact on that at all.
Elaine Katz: You know I think with remote schooling that individuals with disabilities who might not have considered higher education are.
Elaine Katz: Looking at it, we really haven't done much work in that, but you know before covid we did a survey and it did show that.
Elaine Katz: young adults with disabilities who are going through both a two year school and a four year school were taking advantages of all the opportunities.
Elaine Katz: Just like students without disabilities, the only real difference is they weren't focusing on the tech fields like science math.
Elaine Katz: What they call the STEM fields and that could be a real problem, as the job growth in the U-S, as we see it, it is, is becoming highly technical.
Elaine Katz: You really can't almost do any job, including you know punching in your timeclock that doesn't use a computer.
Elaine Katz: So it's really important to get those types of skills we're coming out with a new survey in the fall that's really step up to our supervisor survey we do it in 2017.
Elaine Katz: we're looking at the data, right now, but what that survey did was trying to compare how supervisor looked at hiring people with disabilities pre covid.
Norma: Wow.
Elaine Katz: To what happened duringcovid so that gets to what we talked about earlier is the accommodation questions are they onboarding more people are they finding more people what's happening in the workplace, so we're really excited hopefully that will come out in October.
Elaine Katz: Which is Disability Employment Awareness Month.
Nadine Vogel: yeah.
Nadine Vogel: One of the things that you bring up about you know the technology, I had a conversation goes back a few months ago with an occupational therapist she works with adults with disabilities.
Nadine Vogel: And one of the conversations we were having was how do, how do we get the O-Ts, the P-Ts, the speech therapists.
Nadine Vogel: When they start working with the children, the young children to incorporate technology more into the therapies.
Nadine Vogel: So that at a very young age, these children are getting more comfortable with technology, you know and and almost keeping up with their non disabled peers if that's possible.
Nadine Vogel: So I don't know if that's like a thing or not I mean she and I were just having a conversation Elaine your thoughts on that one.
Elaine Katz: I know they are using some technology, as you mentioned, I have a friend who's a speech pathologist and during covert she did have a home setup and she was working with.
Elaine Katz: You know the client she had who are children who are on computers and using computers and part of what she was doing was teaching some you know usage of computers so.
Elaine Katz: I do think some of the bigger hospital systems, I know we've done our research side have used some robotics and you know computer type things as part of therapy, but that really goes to.
Elaine Katz: You know, teaching I there is actually computer training for girls young girls there are you know it's more computer clubs and getting.
Nadine Vogel: Right.
Elaine Katz: young children with disabilities mainstreamed and we're talking about integrated into some of the boys-and-girls clubs and other places where they do have some training and teach courses after school or on the weekends in technology.
Nadine Vogel: I think it comes down to you know we've been talking about the workplace right and accommodations I think it comes down to these these after school programs that you're talking about and clubs.
Nadine Vogel: getting them to understand accommodations of the students, so we can get them, you know it's just like we found in colleges right students with disabilities don't aren't exposed as much as their non disabled peers to internships.
Nadine Vogel: Right so again it's, we have to push the needle but start it I guess at a younger age, I am hating to say this, but we are out of time I that that half hour just kind of flew.
Nadine Vogel: So Elaine any any last words of wisdom you.
Nadine Vogel: You want to leave our listeners with.
Elaine Katz: I think it's important that we, when we talk about competitive integrated employment, that we do focus on that and try to provide as many opportunities of that.
Elaine Katz: But when we're talking about integrated or inclusive, I think the idea of including people with disabilities in all aspects of the Community, besides employment to your point about socialization and clubs in government that's also very important.
Nadine Vogel: Okay, well, thank you so much for joining.
Nadine Vogel: us today.
Norma: Yes. Thank you so much.
Nadine Vogel: If someone wants to get in touch with you, or with Kessler, how should they go about doing that.
Elaine Katz: They can just email me at E-K-A-T-Z ekatz@kesslerfoundation.org.
Nadine Vogel: Great well, thank you.
Nadine Vogel: norma. Thank you.
Norma: Thank you so much.
Norma: Another great session
Norma: Another great one. yes.
Nadine Vogel: Absolutely. And to our listeners, thank you for joining us on another episode of disabled lives matter we are more than a podcast we are a movement see you next time everybody bye bye.
Norma: Be blessed.
Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!
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Friday Sep 02, 2022
Friday Sep 02, 2022
Season 02, Episode 19
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Sheri Byrne-Haber
Intro: [Music playing in background] Disabled Lives Matter... here we go!
Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.
Nadine Vogel: Hello and welcome to the podcast disabled lives matter i'm Nadine Vogel one of your hosts I am joined by my fabulous co host Norma Stanley.
Norma: Hello everyone.
Nadine Vogel: And we want everyone to remember that this is more than a podcast, this is a movement and I absolutely think that you will agree, after hearing today's guest Sherry Byrne that you are going to agree with us so sherry, welcome to the show.
Sheri Byrne-Haber (she/her): Thank you, glad to be part of the movement.
Nadine Vogel: Absolutely absolutely and you know you have done so much, I think you have helped create the movement in many ways, so maybe we could start just tell our audience a little bit about your background because it's I think it's fabulous.
Sheri Byrne-Haber (she/her): Sure, so i've been in the field of digital accessibility for about the last 12 years before that I was an advocate for the Deaf.
Sheri Byrne-Haber (she/her): kind of an eclectic educational background I started off in tech with a degree in computer science.
Sheri Byrne-Haber (she/her): And then I became a lawyer, thinking that I was going to do, intellectual property and then I ended up going into accessibility, because of my daughter losing her hearing, so I do have a congenital mobility problem I use a wheelchair for getting around longer distances.
Sheri Byrne-Haber (she/her): But yeah i've been you know living eating sleeping and breathing the disability movement literally since I was born.
Nadine Vogel: Literally exactly so you know let's just get right into this People with disabilities are discriminated.
Nadine Vogel: They are discriminated in so many different ways and and what's so disheartening to me.
Nadine Vogel: You know my company springboard, this is what we do right we help companies mainstream people with disabilities in all aspects so that they're not discriminated against, but I feel like you know we barely move the needle.
Nadine Vogel: So, can you talk to us about at all the ways, you see, people with disabilities discriminated.
Sheri Byrne-Haber (she/her): Well, you know some of it is unconscious bias and some of it is a little bit more overt.
Sheri Byrne-Haber (she/her): You know if you don't buy accessible software you're inherently discriminating against your employees with disabilities, because they may not be able to use it.
Sheri Byrne-Haber (she/her): People with the hiring managers that are frequently not trained on how to interview people with who are neuro diverse.
Sheri Byrne-Haber (she/her): In particular, you know if you're looking for I contact a firm handshake that's not going to work for hiring people with disabilities that's automatically going to discriminate against them.
Sheri Byrne-Haber (she/her): You know, some of them are subtle discrimination i've seen is especially in the job of employment area, which is where i'm particularly active.
Sheri Byrne-Haber (she/her): Is an applicant tracking systems if they're looking for gaps in resumes and automatically rejecting those people that's automatically going to.
Sheri Byrne-Haber (she/her): impact, people with disabilities, because they're going to have more likely to have gaps they're more likely to be laid off they're more likely to have medical conditions that force them to leave their jobs and and deal with the conditions before they can go back to work.
Sheri Byrne-Haber (she/her): You know and and some of it is just you know, out of fear I can't tell you how many times i've been in the grocery store in my wheelchair, and you know the you know some child points to me out of curiosity and the mom says Oh, shhh and they run to the next style right, you know they you know.
Sheri Byrne-Haber (she/her): People are indoctrinated to a very early age, that disability is negative disability is bad and they are not taught that people with disabilities matter or the people with disabilities can thrive.
Norma: That's right.
Nadine Vogel: Absolutely I mean Norma and I both have adult daughters with disabilities and we see it all the time don't we norma.
Norma: Absolutely it's it's maddening.
Nadine Vogel: yeah and you know this issue you bring up the unconscious bias I, I have a just a personal thing that.
Nadine Vogel: I think biases I don't believe in unconscious bias, I think people consciously are bias, but.
Nadine Vogel: It may be because of that mom that told them just to shush right how they grew up how they the inexperi inexperiences they didn't have it doesn't mean they're trying to be mean it's just that they don't know like you said they.
Nadine Vogel: don't have the training and the understanding and you know it just you know it, for me, even I I went through this issue with elementary schools were when they started teach teaching foreign languages and teaching like Chinese and German and Italian why aren't you teaching sign language.
Nadine Vogel: Why why isn't that.
Sheri Byrne-Haber (she/her): it's taking a long time for sign language to get actually recognized as.
Sheri Byrne-Haber (she/her): A foreign language credit.
Norma: Absolutely.
Nadine Vogel: Exactly.
Sheri Byrne-Haber (she/her): But it wasn't until some of the major schools like Princeton the Ivy league's like Princeton and Cornell started doing it that everybody else went oh well if they're doing it, we should do it too.
Nadine Vogel: Absolutely absolutely so I want to come back to your comment about the applicant tracking systems, so do you have a solution to that.
Sheri Byrne-Haber (she/her): um I don't know that I do you know the the software companies are you know, like.
Sheri Byrne-Haber (she/her): JESSICA rabbit they say well we're not bad it's just how we're used that makes us bad and you know you hear that from social media you hear that from from a lot of different companies, you know I would prefer that companies not offer options that allow people to discriminate. right.
Nadine Vogel: right right.
Sheri Byrne-Haber (she/her): That you know that's that's my way of thinking, you know short of that all you can do is education or you know, a big lawsuit.
{Laughter.}
Sheri Byrne-Haber (she/her): that's that's the one, nothing will teach a company faster.
Sheri Byrne-Haber (she/her): That what they're doing is wrong than having to shell out a bunch of money on legal fees and settlement agreements because it turns out what they did was wrong.
Norma: right.
Nadine Vogel: right.
Nadine Vogel: And then, and you know what's interesting to me that when I see that i'm always like Okay, so now, the other companies, especially at least within their industry they'll get it now I still don't see that.
Sheri Byrne-Haber (she/her): They will, or they won't most most litigation doesn't go to trial and most end up in confidential settlement agreements so unless it's the E-E-O-C or the Department of Justice suing I would say, probably only about I mean my best guess would be maybe one in 100.
Nadine Vogel: Ugh.
Sheri Byrne-Haber (she/her): lawsuits filed you ever hear about.
Norma: Wow.
Nadine Vogel: Norma this is not good.
Norma: not good at all, you know, I was in a situation not to long ago where.
Norma: Somebody was going to a restaurant a brand new restaurant and the way the seats were situated my daughter's wheelchair we could not maneuver to the table that it was a birthday party and I sharing with the manager, can you please you may need to provide me these things.
Norma: And its a manual chair, can you imagine if it was a power chair.
Norma: And I found out from some of the guests who were there, who I guess didn't know we were coming no you're supposed to call you're supposed to call the restaurant first. I said, no you're not.
Norma: We should be able to come into any.
Norma: restaurant, we want to.
Norma: yeah they actually thought that's what we should have done, and we were the one messing everybody's party up. Because.
Sheri Byrne-Haber (she/her): Oh well, let me tell you a story them so two days ago.
Sheri Byrne-Haber (she/her): So recently.
Sheri Byrne-Haber (she/her): I was flying back from Denver.
Sheri Byrne-Haber (she/her): I called the shuttle company they advertise on their website, they were A-D-A accessible, I called the shuttle company and they're like oh yeah we're gonna have that shuttle ready for you, when you get here.
Sheri Byrne-Haber (she/her): I got there you know, of course, they only had one shuttle right, not all the shuttles were A-D-A.
Sheri Byrne-Haber (she/her): accessible and it was at the airport and the guy decided to take lunch.
Norma: Oh wow.
Sheri Byrne-Haber (she/her): Right so um you know that you know, this is the reason why and and, yes, I have filed a complaint with the Department of Justice and with the company and flamed them on Twitter and everything else.
Sheri Byrne-Haber (she/her): But you know, sometimes you feel like you're you're spending your entire life doing that.
Nadine Vogel: Don't that.
Sheri Byrne-Haber (she/her): because nothing was made for us and people rarely think to include us.
Norma: Absolutely.
Nadine Vogel: And it's true and I think you know, because you were talking earlier about employment issues, even if we think of the interview process I would love to hear your comments and your thoughts.
Nadine Vogel: On just the discriminatory practices that set people with disabilities up for failure, right from the interview.
Sheri Byrne-Haber (she/her): Well, you know, first of all interviews, I think I can only speak from tech because that's where and a little bit from previously being a lawyer interviews tend to be really long blocks of.
Sheri Byrne-Haber (she/her): Contiguous time you know, sometimes i've heard of blocks of interviews as much as six hours that can be very difficult, if you have a fatigue related disability or if your neuro diverse.
Sheri Byrne-Haber (she/her): You know the biggest problem I see is that.
Sheri Byrne-Haber (she/her): People who are doing the interviewing can't put themselves in the position of the person that they're interviewing so they don't understand.
Sheri Byrne-Haber (she/her): What a compen compensatory skills or things that people have developed like you know I might be interviewing.
Sheri Byrne-Haber (she/her): The the place, I happen to work is a 2.2 miles square campus right so somebody might look at me and my wheelchair and think well I don't know how she's going to get around here.
Nadine Vogel: right.
Sheri Byrne-Haber (she/her): um so you know there's there's.
Sheri Byrne-Haber (she/her): there's discrimination what wherever you go there's discrimination in how the interviews are set up, you have to request captioning frequently it's not automatically turned on.
Sheri Byrne-Haber (she/her): The.
Sheri Byrne-Haber (she/her): You know people who are.
Sheri Byrne-Haber (she/her): Do or neuro diverse or who have disabilities frequently you know have competence issues from the way that they've been treated in the past, so it's very difficult to come into this.
Sheri Byrne-Haber (she/her): You know projecting confidence and so when when people are ranking the candidates, at the end of the day, unless it's a job, where they're specifically looking for somebody with a disability, you know frequently we're we're ranked.
Sheri Byrne-Haber (she/her): Lower in the priority list, yet the other issue is many people hide disabilities, yes 70% of disabilities are invisible.
Sheri Byrne-Haber (she/her): And there's a great Harvard Business Review study about how that impacts.
Sheri Byrne-Haber (she/her): Employment in that the employees are much more anxious and much less engaged because they're worried about being outed.
Norma: Yes.
Sheri Byrne-Haber (she/her): and i'm making air quotes around that word.
Sheri Byrne-Haber (she/her): about having a disability, and then you get into the catch 22 where because you haven't disclosed you can't get accommodations so you can actually get fired.
Sheri Byrne-Haber (she/her): For the the performance issues associated with your disabilities, in order to get protected, you have to.
Sheri Byrne-Haber (she/her): make it known and ask for accommodations and that's a very difficult step for some people to take and it's a very difficult step.
Sheri Byrne-Haber (she/her): For people who grew up outside of countries that have protections for people with disabilities, I work with a lot of people from India, for example, they have a very different concept of disability in India.
Nadine Vogel: Yes.
Sheri Byrne-Haber (she/her): Then we do in the United States.
Nadine Vogel: Absolutely. I've I've we've done a lot of work in India and you right it's very I mean from the language to the accommodation expectation everything.
Sheri Byrne-Haber (she/her): Yeah.
Nadine Vogel: very, very different so for those listeners that have yet to disclose to their employer and maybe because they don't even know what they can ask for what's possible.
Nadine Vogel: Right, because we have listeners in different countries, you know, do you have like I hate to say, like the top three or top five or things that you want to make sure folks know they can ask for.
Sheri Byrne-Haber (she/her): So accommodations typically break down into three categories there there's processes there's tools and there's facilities right so processes are things like.
Sheri Byrne-Haber (she/her): You work from home full time or you work six hours a day, instead of eight hours a day um or you get you know your time off from three to five every other Wednesday for some type of medical related appointment.
Sheri Byrne-Haber (she/her): tools are, for, if you have dyslexia, for example, you might want grammarly.
Sheri Byrne-Haber (she/her): grammarly is a great tool to help people who are writing documents make sure that everything is in the correct order and grammatically correct but it's about $100 and it's not I mean it's cheap for a company it's not necessarily cheap for an individual.
Sheri Byrne-Haber (she/her): So there's lots of tools, you can ask for screen readers or magnifier or anything having to do with with software related to disabilities and then finally there's facilities modification so. any facility
Sheri Byrne-Haber (she/her): that was built.
Sheri Byrne-Haber (she/her): Before the Americans with Disabilities Act, and so, as they are renovating buildings.
Sheri Byrne-Haber (she/her): they're adding in electronic door openers they and they added them to the buildings that I use the most frequently so that just you know it's not required under the A-D-A but I was really struggling and.
Sheri Byrne-Haber (she/her): And so they did add those to make it easier for me to get in and out of the building and get in and out of the restrooms.
Nadine Vogel: Right right well that that's perfect because I think people really sometimes just are not sure what they can ask for or they're uncomfortable because they don't see anyone else, having that disability right and having that accommodation.
Sheri Byrne-Haber (she/her): Right well accommodations are supposed to be confidential so.
Sheri Byrne-Haber (she/her): Unless.
Sheri Byrne-Haber (she/her): Somebody talks about it.
Sheri Byrne-Haber (she/her): you're not necessarily going to know what other people are doing.
Sheri Byrne-Haber (she/her): And then the other thing is you don't necessarily get what you asked for you, if you ask for a BMW solution, but it can be solved with a you know Prius you're going to get the Prius right.
Sheri Byrne-Haber (she/her): And, but because the point of an accommodation is is solving the problem it's not necessarily getting the most expensive thing available to solve the problem.
Nadine Vogel: Exactly.
Nadine Vogel: Perhaps, so we need to move to a commercial break, but when we come back Sheri I really want to get a little I hate to say controversial, but I really want to start talking about.
Nadine Vogel: Discrimination, as it relates to some of the more recent changes we've seen in our country, such as the undoing of Roe V Wade so for everyone stay tuned don't go anywhere, this is going to be an exciting discussion.
Nadine Vogel: Be right back.
Voiceover: And now it's time for a commercial break.
[COMMERCIAL]
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Voiceover: And now back to our show.
Nadine Vogel: Hello everyone and welcome back to this evenings episode of disabled lives matter we are more than a podcast we are movement, I am here today, as always with my co host Norma Stanley.
Norma: It's great to be here.
Nadine Vogel: Yeah. And today, we are talking with Sheri Byrne Haber and we've been having a fabulous conversation about you know just people with disabilities in the workplace.
Nadine Vogel: Some of the discriminated discriminatory practices that we see all kinds of accommodations folks plans for, but we want to change the topic a little bit.
Nadine Vogel: Um Sheri is the author of a popular medium blog called this This Week in Accessibility and in this blog she summarizes legal cases and issues facing people that implementing accessibility programs.
Nadine Vogel: One of the things and how Sheri, and I actually first engaged with with some of the latest legislative changes to Roe V Wade.
Nadine Vogel: And we know that this is a topic that people are very feel very strongly on both sides um today's conversation is going to be about the impact on women with disabilities so Sheri take it away because I just this just tears at me.
Sheri Byrne-Haber (she/her): Sure, so you have to start with the baseline that women with disabilities already experience discrimination and healthcare.
Sheri Byrne-Haber (she/her): women with disabilities are more likely to be in state funded insurance programs, which are just generally lower levels of quality.
Sheri Byrne-Haber (she/her): There is discrimination associated with weight, there is discrimination associated with you know, being a person of color who's a woman with a disability it's all intersectional it all adds up over time.
Sheri Byrne-Haber (she/her): But then, in particular with with with the Dobbs decision, which is the one that overturned Roe V Wade.
Sheri Byrne-Haber (she/her): You know there's a couple of really important statistics to understand for women with disabilities, you know, first of all women with disabilities are five times more likely to be sexually assaulted.
Norma: Yup.
Sheri Byrne-Haber (she/her): Then women without disabilities, especially women with intellectual issues.
Norma: Yes.
Nadine Vogel: Yes.
Sheri Byrne-Haber (she/her): mental health issues so that's a pretty significant concern.
Sheri Byrne-Haber (she/her): So they're more likely, you know to be pregnant, not through any desire of their's you know some women with disabilities have conditions that they don't want to pass on to their children, so they may have some autosomal dominant.
Sheri Byrne-Haber (she/her): Genetic condition, where the.
Sheri Byrne-Haber (she/her): Child is 50/50 whether or not they're going to have the same medical condition that they do, and so that's a significant issue.
Sheri Byrne-Haber (she/her): For there but there's all kinds of other side effects as well, so you know we I hear a lot there's this woman on on linkedin that I follow I'm spacing out on her name.
Sheri Byrne-Haber (she/her): But every post that she has she says when a black women are four times more likely to die in childbirth, why aren't we doing anything about this well women with disabilities are 11 times more likely to die in childbirth, why aren't we doing something about that.
Nadine Vogel: Oh, my gosh.
Sheri Byrne-Haber (she/her): and then again intersectional a woman of color with a disability is probably even higher than than the 11 times more likely.
Nadine Vogel: Oh my.
Norma: Absolutely.
Sheri Byrne-Haber (she/her): women with disabilities are more likely to be in poverty, and so they are not always able to take care of children, even if that was.
Sheri Byrne-Haber (she/her): Even if they didn't want to end the pregnancy and then you look at the there's all kinds of secondary side effects so there's discussion about how does the Dobbs decision impact.
Sheri Byrne-Haber (she/her): In vitro fertilization that's going to directly impact women with them infertility conditions which can be tied to disabilities.
Sheri Byrne-Haber (she/her): Women with rheumatoid arthritis are already reporting that they can't get their prescriptions refilled.
Sheri Byrne-Haber (she/her): One of the drugs that's most commonly used it's the cheapest drug out there, totally safe been on the market for like 30-40 years it's one of the drugs that they use to induce miscarriages.
Nadine Vogel: {gasps.}
Norma: Wow.
Sheri Byrne-Haber (she/her): and so pharmacists are refusing to refill it.
Nadine Vogel: Ugh.
Norma: Ugh.
Sheri Byrne-Haber (she/her): in the trigger states.
Norma: Domino effect.
Sheri Byrne-Haber (she/her): Some of them have had these prescriptions for years and years and years, and you know I can speak from personal experience when Covid started.
Sheri Byrne-Haber (she/her): Two of the drugs that I was on from my rheumatoid arthritis all got confiscated for Covid trials and I had to go off my rheumatoid arthritis drugs cold turkey, and I was miserable, it is not a good place to be.
Norma: Wow.
Nadine Vogel: That's that's.
Norma: That's. staggering I mean, I know that my daughter who's 33 and you know sexual activity is not on her radar but just even getting a G-Y-N exam is challenging.
Sheri Byrne-Haber (she/her): Sure.
Norma: because she's in a wheelchair, and you know she's just not going to sit for that.
Sheri Byrne-Haber (she/her): The doctor's office don't have joists.
Norma: They don't.
Sheri Byrne-Haber (she/her): to transfer people they don't have tables that can hold more than 250 pounds, you know it's it's.
Sheri Byrne-Haber (she/her): You know, there are starting to be more regulations that are coming out from the government specifying that but then, yes, the same thing as a disabled bathroom right.
Sheri Byrne-Haber (she/her): You know, you can be compliant again making air quotes and have an accessible bathroom but if there's somebody in there with a stroller and i'm out here with a wheelchair trying not to have an accident that doesn't help me that much so, you know, having a single accessible room.
Sheri Byrne-Haber (she/her): Is that you know compliant, but not sufficient.
Nadine Vogel: Right, so if wow. what, if anything is being done or can be done behind the scenes, right now, relative to the Dobbs decision in helping folks and the government understand the implications here.
Sheri Byrne-Haber (she/her): You know it's a really good question, I know that some of the national disability organizations are starting you know fundraising campaigns and letter writing campaigns, I've talked to people.
Sheri Byrne-Haber (she/her): who have not been able to get their drugs refilled and pointed them to Mark Cuban's website which does sell methotrexate, which is the drugging question.
Sheri Byrne-Haber (she/her): and told them look get an out of state prescription get it filled here and then get it mailed to your House now will the state state government of South Carolina eventually pass laws, making even mailing of drugs.
Sheri Byrne-Haber (she/her): To their state illegal possibly what happens if you don't have the money to pay for the outside methotrexate and for the outside referral.
Sheri Byrne-Haber (she/her): So you know fundraising advocacy campaigns that's that's really where we're at right now, I mean the decision is only slightly over two weeks, and so.
Sheri Byrne-Haber (she/her): I think people are still not really understanding that this is more than about you know stopping people from having you know abortions when fetuses are viable, this is, this is about controlling women and controlling women through through all these.
Sheri Byrne-Haber (she/her): Side effects that I discussed.
Nadine Vogel: Right well, and you know shame on the big pharmas. I mean they should be willing to take a stand and say I mean don't they have any role in this.
Sheri Byrne-Haber (she/her): You know I hadn't thought about it from that perspective um a lot of the drugs in question have been around for a while and so they're generic.
Sheri Byrne-Haber (she/her): And and they're not big profit centers I know there's only one manufacturer of the injectable methotrexate because when they had a quality control problem.
Sheri Byrne-Haber (she/her): Due to a hurricane, all of a sudden, there was a shortage and they asked all the people who were on it, can you switch to the pill form, so that we can use this special injectable.
Sheri Byrne-Haber (she/her): For kids with leukemia where the injectable was the only thing that they could take they couldn't take the pills so that's a problem because.
Sheri Byrne-Haber (she/her): You know there's just not not a lot of money in generics, the money is in you know what they're advertising on TV.
Nadine Vogel: Right well you know what I mean so many things bother me.
Nadine Vogel: You know this whole issue you know let's talk let's back it up to Covid right, so when government was pushing you know the Covid vaccine right and people were saying well I don't want to take the vaccine my body my choice blah blah blah, how is this different.
Nadine Vogel: How is this different.
Sheri Byrne-Haber (she/her): I don't I can't I can't split that hair, you know I just don't understand the people who can.
Sheri Byrne-Haber (she/her): retain the cognitive.
Sheri Byrne-Haber (she/her): You know clash between those two positions.
Nadine Vogel: Right.
Sheri Byrne-Haber (she/her): Right, you know my body my choice with Covid vaccine and your body my choice.
Sheri Byrne-Haber (she/her): with pregnancy.
Nadine Vogel: Right it just. It makes no sense and and and obviously this they're not thinking women with disabilities, because they're not even thinking women in general, but to your point well, first of all, the statistic that you quoted women and with disabilities 11 times more l