Disabled Lives Matter
S1-Ep9_Myrna_Clayton

S1-Ep9_Myrna_Clayton

April 29, 2021

Disabled Lives Matter

Season 1, Episode 9

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Myrna Clayton

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 with co-hosts Nadine Vogel and Norma Stanley... yay! 

Nadine Vogel: Hello everyone, this is Nadine Vogel your co-host of disabled lives matter we are more than a podcast we are a movement, and I am so excited to have my co-host with me Norma.

 

Norma Stanley: Hey everybody this is disabled lives matter time and you're going to have a wonderful time today so let's get to it.

 

Nadine Vogel: Absolutely, and you know why we are going to have a wonderful time because we have the amazing Myrna Clayton with us today.

 

Norma Stanley: Yes, America’s songbird.

 

Nadine Vogel: So uh yeah I got to tell ya I mean I know you're a professional singer, you’ve been a US cultural ambassador but I want to hear about this songbird thing, how did you get that title.

 

Myrna Clayton: You know in performing, the songbird part came first before the American part came just kind of putting them together but songbird oftentimes when people hear me sing they’ll refer to me as a songbird and so we sort of just kind of stuck and because I perform abroad being known as being from America, it was America songbird because of you know, nationally, then I’m easily recognized as from America so that’s where America songbird came from just from the perspective, what the international travels that I do.

 

Nadine Vogel: got it got it well, I gotta tell you, you know we got to meet out in a few months back, and I remember we were both interviewed on a show and I got off that show and I thought wow how many different things can this one person do and have so much and not exhausted not anything I was amazed, so I really want to talk about show ability, I believe it was initially called able to. Can you tell our listeners what show ability is and what brought you to found this organization.

 

Myrna Clayton: Okay, well, first of all show ability is a 501 C three it's been around now for 12 years officially as a 501 C three for 12 years and Show ability is for people with visible and invisible disabilities and the support of people that love them, we are allies that uplift the gifts of people with disabilities so that they can be valued and appreciated for their gifts and their talents at the end of the day, we want to promote the talents of performing artists with disabilities. And for the audience's that come to see them, we want to very much so give them a place of being welcome and thrilled to be in the audience experiencing folks who look like them and showing showcasing their talent, and so our North star is to be for the arts entertainment industry, what the Paralympics and the Special Olympics are for the sports industry showcasing excellence and talent.

 

Nadine Vogel: Ok I like that. Norma, she’s one amazing lady isn’t she.

 

Norma Stanley: Absolutely, absolutely and I’ve been blessed to know her for a few years, I am also blessed to be a member of her board that.

 

Myrna Clayton: Norma is one of our board members and we’re so thrilled to have her, she is so dynamic.

 

Nadine Vogel: Well, I’m curious, the story that I’ve heard is that how you came to start this organization was that you saw I think a 10-year-old boy who had cerebral palsy and he was having trouble, I think, getting up on the pulpit in church or something to sing is that accurate.

 

Myrna Clayton: Yes, it was it was it was interesting because I happened to be there. And I saw him struggle to get up three steps, and I guessed he had cerebral palsy because he had the canes on his arms and he was 9 10 or 11 and I kid you not Nadine, when he started singing because, as you know, of course, everyone goes aw you know you feeling a kind of way about him struggling to get Into the space for him to be able to perform, but he got right up there and turn to the audience after he gathered himself and he began singing and he just blew the place out of the water, I mean it was so, I and I’m sure everybody in the audience forgot all about his challenge because his voice was so amazing and it's crazy because you know. I go on, I wasn't thoughtful at the time I was you know I didn't get his number because that wasn't that wasn't on my radar at the time, I was just admiring a talent, the person who had tell like I would admire anybody. And, but it just so happens that about five years later he crossed my mind, and I was like oh, he ought to be a teenager now he ought to be killing it, so I want to hear him today, and so I didn't know him I didn't know, I didn't have any connection with him, and so I began asking my musician friends, because I know musicians that play in orchestras or churches for party bands, for you know jazz ensembles. I know musicians across the gamut, and I asked, and no one knew I said, do you know any performers with disabilities, you know any singers with disabilities and out of about 30 or 40 musicians that I spoke to musician’s choir directors, no one knew anybody. And to me, I was like that doesn't make sense. Now, mind you, I have an MBA, and so I come from a corporate background that deals with new products and new business development, and so I know statistics and I know it sounds like that just doesn't make any sense that none of you know anybody that has a disability that sings I mean you're around singers you're around musicians and none of you know anybody and so at that point, I began saying okay obviously there's a need right obviously there's an opportunity and so we went from there. We had our very first show our very first event was a talent show and then that's when we got into the space of recognizing that oh wait a minute per person with disability can't get on stage because stages are not accessible or green rooms not accessible tech areas are not accessible so that again that wasn't on my radar so I was like wait a minute what do you mean we can't get on stage and so things that are ADA, ADA doesn't cover that kind of stuff. So at that point, I became, not only a lover of talent, but a serious advocate because there's some basic things that we don't, because from childhood, I say we're taught not to point and not to stare so we don't it doesn't come to our mind it's not a part of our consideration set and so as a result, we don't even think about the fact that oh you don't have that.  The next question is well why you don’t have that. So it's just kind of like what? You know, just some intuitive things that we take for granted and unless we're in a situation where you're, if you happen to be where you're a parent with a child with special needs, or have a disability, then at that point you're like. Oh no my child needs to have this child needs to have access and if everybody else has access, then we should have equal for it certainly equity access as well, so at that point, I became a fighter because my talent couldn't get on stage.

 

Nadine Vogel: Right, well and that’s the challenge right Norma.

 

Norma Stanley: Absolutely and we know as parents, Nadine and I both being parents of children with disabilities, I mean you become an automatic fighter because you wanted to make sure that your child doesn't miss anything and other families and children, like ours, so we are automatically it just it's just part of who we become. And you know I love the fact that what you're trying to do for performing artists and for families like mine, who I like to go and visit and watch and participate in all of those things to you know that you're trying to open up zoom as an accessibility for this Community.

 

Myrna Clayton: It's so funny if I can kind of jump in because, because we had Artists with disabilities on stage, then of course we would have disproportionately more audience members on the disability spectrum and facilities aren't prepared for that either. I mean, I had a security guard come to me and say ma'am if you have one more person with a wheelchair come in there will be a fire hazard.

 

Nadine Vogel: Oh, my gosh.

 

Myrna Clayton: Well, where are they to go, I don't know what the lobby, but they can't be in here and so after some expletives. I was like hey, this doesn’t make sense because they had they had space for three wheelchairs three and you can go someplace you can't if you come with a person than the person you can't sit with the people you come with me there's so many. So many hindrances and barriers that again the plate the facilities aren't thinking about and that's because I guess there's not enough of us raising hell to say to hey, we're paying, we have the income to buy a ticket, you know we've got the give us the access give make things accountable and accommodating for us. You have an accountability to us as you're paying customers.

 

Nadine Vogel: Right no, absolutely and I know that you know, accessibility as we're talking about it, is critical. So, I think I mean I realized that with show ability it's not just one thing you have a number of layers number of components to what you do. So one of the ones I know I want to ask you about was your inclusive chorus. Since you're talking about accessibility and inclusivity, could you talk a little bit about that.

 

Myrna Clayton: Absolutely, you know I’m really excited about that, because that chorus we started last year during the pandemic and we had planned to have it, you know, we had planned to start it before the pandemic happen, you know that was a part of our you know our strategic plan to start that, but the pandemic happened, it was like well, this is the 30th anniversary of ADA we can't let that stop us plan to do and so me being one who's a stickler for okay this, it is what it is, it's so the show must go on. So I started gathering, you know different persons who I knew were singers that are with and without disabilities very good singer, this is not a kumbaya thing, this is it singers and the challenge came. All of the public facilities, where we could have had rehearsal all of the churches, everything was closed, so all the places that was supposed to be Community centers or Community oriented places were closed So where could we rehearse because we did not have at that time we still don't have and we're looking for we desirous of a place to rehearse and. And, and so thankfully Norma’s church her pastor allowed us to come and rehearse there in the very beginning, and then there was a Community a venue music venue that also said yes, you can come here and so as long as we were socially distance, we could, and so, starting in. We recruited June, July August and we started rehearsals in August, September. Right after Labor Day and we rehearsed until November getting into the holidays and we were able to have a kickoff concert the original plan was to have it in in 2020 but, of course, had challenges with COVID, in terms of getting a venue, where we can have it. But, we finally were able to do a kickoff concert, where we recorded live we recorded live and showed it virtually. And so we were able to show it at the bucket theater we recorded it at the bucket theater here in Atlanta, which has an accessible stage has an accessible tech area has an accessible green room, so they are accessible, all the way, which is phenomenal. Many theaters in Atlanta do not have that, I mean the larger theaters don't have that and so they were and even the seating was accessible, but we didn't we have social distance we had very limited seating with in terms of guests, but we were really excited about the inclusive chorus because it allows us to sort of get it that mainstreaming yeah you know for those persons who feel that.

 

Nadine Vogel: Oh, I’m so glad you use that term we use it all the time, we always say mainstreaming people with disabilities.

 

Norma Stanley: Yes, yes.

 

Myrna Clayton: So, this was our effort of curating something from a mainstreaming standpoint with and without disabilities for them coming together in a truly inclusion, you know, inclusive and that's why it's called inclusive chorus.

 

Nadine Vogel: Got it, got it, well that's oh my gosh that's fabulous. I know there's some other programs that you also do, I don't know if Norma, I’m just taking up all the time.

 

Norma Stanley: I mean, I would like her to share what she does during October, and you know what the career day and how effective that has been for especially elementary students. A little bit about that.

 

Myrna Clayton: Oh, absolutely October is disability employment awareness month. As you guys know. Many people don't but, as you guys know and during the month of October we go into elementary schools were with professionals with disabilities. And the entire school talk about inclusion, mainstreaming, the entire student body is having the opportunity to meet these professionals on the disability spectrum. And they and we do a sort like a round Robin where they rotate the students rotate the presenters stay in one room in the kids rotate and we talk to K through two to second grade in the morning and third from fifth grade in the afternoon, it was a full day and every student in the school is able to interact and engage with these professionals and here's the thing they can ask them anything they want to. Does that hurt, how did it happen to you, you know just any question that they want to ask, and the professionals are ready to answer and say well I’m you know I’m just like you, you know you all. Whatever and, and these are persons that across the disability spectrum, whether that's you know, autism, down syndrome wheelchair user, deaf in that was a crazy experience, because it was so funny it was like the kids were watching a tennis match. Because, you know the person deaf was signing and the interpreter the translator not interrupter the translator was behind you know sitting with the kids, so it was like watching a tennis match was so funny. And so we're you know we're learning in this process on how you know so next time you know we'll do we'll make do a different kind of a thing, because of course the translator has to see what the person is saying, but they don't necessarily have to sit with the students, and so we got to figure this out, but that's my attitude with everything, just like parents, you know, have to figure things out. When they have you know we're having to figure things out because this, this is our effort at getting at those who have been newly socialized not to point and not to stare. We want them to be able to tell their brothers and sisters their parents, oh no it's okay, we can you know that he's okay, if I asked him a question, or if I speak to him or say hi to her, you know it's okay, you know as opposed to get weirded out. And so, the kids are the kids love it we have one person that’s a wheelchair user and they brought their service dog, so the service dog was the celebrity because the kids love the dogs. She was able to teach them that you don't pet a service dog, a service dog is at work. And so, you don't pet a service dog and so those kinds of things that were able to teach the kids. And the teachers, because the teachers are clueless to you know, and it wasn't separate the kids in the special needs classes came and were a part of the entire student body as well, and so it allows the students to be able to see the students that when the special needs classes, you know see them in a different light as well, so it’s great.

 

Nadine Vogel: That's fabulous.

 

Myrna Clayton: Yeah, we even we even talked about bullying and how bullying is bad.

 

Nadine Vogel: And bullies grow up, unfortunately.

 

Norma Stanley: Yes, right. They're doing it as children they probably will do it as adults, we have to cut that out.

 

Nadine Vogel: Absolutely, do you know that almost 25% of the complaints need the eoc on the part of employees with disabilities is for harassment and bullying. Different than what we see in the kids in schools but bullying nonetheless right it's still an issue.

 

Commercial Break: Thank you for being part of history in the making. Show ability is very excited about forming the first ever inclusive chorus comprised of good singers with and without disabilities. As a 501C3 Organization, show ability seeks to be agents of change. We are leveraging art and entertainment as the vehicle that brings visibility and awareness to the capabilities within the disability community. We are doing this by breaking down barriers in three critical areas: accessibility, opportunity, and employability especially in performing arts. The significance of the disability community has been overlooked for far too long. It is our desire as show ability to the arts and entertainment industry what the Paralympics and the Special Olympics are to the sports industry. Showcasing excellent talent and ability. Remember, nothing about the disability community without the disability community.

 

Nadine Vogel: So, I know something else that you do and it kind of, the reason I want to bring it up, I think it relates to this whole career day and career development is, I think you have a program that focuses on artists development as well as talent booking right? I think that was like that was the bomb I just thought that was so cool so, can you tell us about that.

 

Myrna Clayton: Yes, you know that's sort of still in our labs because we're working and we're recruiting artists, you know on the disability spectrum. Well, just like we know it's hard to find artists that want to come into the spotlight. Well, others are having that challenge to, and especially in Georgia more and more films and movies, are being done here, and so they're looking to cast talent on the disability spectrum, and so they can't find them, and so they would reach out to us, and so I was fine like wait. Well, we can become an agency, you know, and so that so we're growing in that space to and it's been wonderful because you know they'll find out about us know reach out to us and as matter of fact, we just. They were looking for an asl after two weeks ago, and so a casting agency reached out to us and we were able to you know to submit you know, a name for them and here's the thing that we're learning and so, in terms of the artist development that's something that we want to go into once covid is kind of past us. Because, we know artists that are you know singers and dancers, but they're not necessarily actors and so we'll or people will hear about us and we have submitted that in terms of this last one, the asl she is an actor, but we've submitted for teenagers who are wheelchair users they've never acted before but they want to and we're presenting them the opportunity to even consider that as a possibility, so that has been great because what the feedback has been please tell them to be like there look we like that we'd like their tenacity, please tell them to take acting classes. It’s so great and so there's not another organization like ours in the southeast. And so that's dealing with performing arts or in, and when I say performing arts that's multi-dimensional that's anybody who's going to be on stage whether that's dancing modeling singing musicians comedians actors anybody that's on stage that's what we want to present the opportunity for. And again, many people don't want to cut people on the disability spectrum don't want to come into the spotlight because of the stigma narrative absolutely so I’m just going to say, for us, our goal is to give them to let them know this is a safe space.

 

Nadine Vogel: Right well and I think, Norma, you told me that the organization provides variety shows and talent shows. Really, you know, bring to what you're saying to life.

 

Norma Stanley: Absolutely, absolutely and what's really cool about it is you know when they do the modeling and you know model disabilities and then It just it's inclusive of all the different areas, and so you know people who are in the audience get a really good look. Of the variety of people along the disability spectrum through the programming that this particular organization and presents so it's really, really be a very exciting so we're really excited about where the organization is going, where show ability is going moving forward.

 

Nadine Vogel: So, let me ask you this um this something I believe that I don't know if it's new or you've been doing this a long time, but I believe you have something called a virtual arts masterclass.

 

Myrna Clayton: Yes. Well, it's funny because the whole virtual thing really started last year during you know, trying to figure out an annual kudos to Fulton County arts and culture, as well as Community foundation greater Atlanta because they gave us Fulton county encouraged us to do a virtual arts initiative, because obviously people weren't coming out and going to the theaters and venues. And so, with the success of that, now we decided okay we're going to do something monthly to reach our target audience and offer them tools and techniques training to assist them, and so, in February, our board chair is an amazing Radio announcer and public speaker and so she did was she works with a lot of musicians and artists and so she did a master class on how independent artists can market themselves during a pandemic. Last month March we had asl improv class where the leader is deaf and so we had interpreters there, and so it was a great improv pledge which you taught Improve. And then this month we were talking about the art of business we're collaborating with an organization called synergies work that works with the disability community and starting businesses. And so, for she's going to do a master class on what it takes to start a business. For the disability community and so we're doing things once a month, what is the last Sunday of every month at four o'clock and so we're really doing those types of things in this virtual space, just to you know reach our audience and give them something they may not necessarily have the opportunity, you know to be exposed to.

 

Nadine Vogel: And it sounds like this is something that can go way beyond covid, right, even when everybody comes back together.

 

Norma Stanley: Absolutely.

 

Myrna Clayton: And it's great because one of the things that this virtual thing is teaching us is we're not limited in our geography right, you know we've actually had persons participate from California we've had persons participate from other cities and so it's been wonderful as matter of fact, talk about virtual I did a last year I did a I have a relationship, when I perform I’m always trying to do something and connect with the disability community, and so I have a relationship with a disability group in Russia and so they reached out to me and said Hey, would you do a jazz masterclass. So, I was like Okay, you know, so it was crazy, because of course I’m talking and then there's a translator speaking in Russian you know because I don't speak Russian. And so, this virtual thing allows us to reach people that we wouldn't normally reach so it's this virtual we definitely you're absolutely right we're definitely planning to keep this as a part of our program offering.

 

Nadine Vogel: What kind of, I mean, I can only imagine the impact you're having right on not just people with disabilities and their lives and certainly you clearly illustrate that disabled lives do matter right but also the impact you're having on non-disabled individuals right. Awareness and oh my gosh I mean I don't know if you track numbers, but you have to be in I don't know hundreds of thousands of people.

 

Myrna Clayton: You know, we're trying to get there, you know it's funny because, as an organization, you know we're passionate and we're about programming. This year is the year that we're going to get into the more structure organization stuff. Because I’m an artist and so I’m looking production performance very you know reach the audience make the audience, you know happy do that and so we're now into just got an update you know one with our brand name change, you know that was the catalyst for us shifting and going to the next level and so we're definitely looking to increase our awareness in the general population, but you know Nadine,  20%,  you already know 20% of US population are persons on the disabilities spectrum so at the end of the day, honestly, I could care less about the general population 20% is not even a niche.

 

Nadine Vogel: I’m glad you said that I wrote an article that said when a niche is not a niche.

 

Myrna Clayton: Exactly you get me and so I’m I mean to me, if we add just one person meaning like yourself someone who loves the disability Community that's 40% of the population right there. And so, you know so that's the general population, as far as I’m concerned, and so, if somebody doesn't get it. So what there's enough of us that care and are advocates and supporters here, and so, but all of that, in terms of mainstreaming, you know okay there's enough here that we there's a demand for meeting the needs right now, as they are. And so I’m just such a huge proponent of give, meet the needs to accommodate where what we're trying to do it's not a money issue it's not a money issue it's a you need to accommodate us and we're doing programming and rather than just trying to, and this is just me rather than trying to fit into the general population we've got enough we've got enough demand that this is the largest minority population, the country, my goodness.

 

Nadine Vogel: Well, and it's one of those populations that anyone can join.

 

Norma Stanley: At any time.

 

Nadine Vogel: Before we started a few of us were having a conversation about how our age is impacting some of us dipping our toe in the disability water, so to speak, with things going on. So, I have a question I want to go back to accessibility. So, my company, one of the one of the many things that we do is, we have a team that goes on site and does physical accessibility universal design assessments. So, when we're thinking about you know front of stage right. But also, behind backstage right what are what are those things that you think are critical that we need, our listeners who may own theaters are managed theaters in an auditorium is what is it from your perspective, they really need to be thinking about.

 

Myrna Clayton: To make a humanist. Because many of the stages are accessible in the back, because of equipment let's be clear, it is not because of performers or artists. It’s because of equipment they're lazy and they don't want to pick it up, so they want to roll it up there, and so let's be clear it's not because of the human beings it's because of equipment and so.

 

Nadine Vogel: Keep it real, keep It real.

 

Myrna Clayton: Yes, I’m sorry.

 

Nadine Vogel: No, that’s what it’s about, keeping it real, I love it.

 

Myrna Clayton: And so I say we're interested from street to seat, who has a front of house to back of house. Yes, so I mean from the person someone's dropped off at the front mobility standpoint, you know from the from the buses to parking that street to seats and because I needed I need accessible seating, I need choice seating and then front of house is of course staging where am I going to be positioned in that how did I go to the bathroom all of that, and then back of houses so back of house is not only stage but that's green room. Because I can't get to the green room and the green room may or may not be the bathroom may or may not be acceptable because it's you know it's back of house and then the tech area. The tech areas are not accessible and so those three areas back of House think about and so even more of that. The ramps are like 45-degree angles.

 

Nadine Vogel: Right.

 

Myrna Clayton: As opposed to you know, and no one would you I would do a push back with someone says, well, you can just lift them on stage. Don't pick me up on stage I empathize with alley stroker, or you know because every night when she you know the best actor and she's having to be lifted hoisted and she's you know and so she's had to get used to that, as opposed to give her a ramp you know, and so, so the back of house is very much so, if you a ramp is number one preference because other people have mobility issues it's not just wheel chair users. So ramp is number one preference If not, then those lifts, the challenge with the lifts is oh my god again it's like industrial they're so loud.

 

Nadine Vogel: Right, suddenly everybody is looking.

 

Myrna Clayton: Correct and so make it make it, it’s accommodating for the human side of things, no one wants, I mean you feel like you're in jail, you know.

 

Norma Stanley: and make it so it's not so abstruse it, like you say we don't want to call attention to the fact that we're just trying to get into the building without children or without you know, whoever it is that needs the lift.

 

Myrna Clayton: Right, right.

 

Nadine Vogel: You know it's funny we on three work live with the entertainment industry and springboard and we developed a production toolkit for producers and executive producers to understand all these different aspects, even from you know scouting location. Right and that's why I’m asking this question because everything has to be taken into consideration, you know I know Ali knew she had said, you know the barriers are unfortunately barriers of thought right this bias that goes into it and based on how you think okay, we don't need this, we do need this now suddenly we don't have the ramp that we need, so I just, I just love what you're doing.

 

Myrna Clayton: And Nadine, here’s another thing, because, when oftentimes because, because the logo of the moniker for disability is related to wheelchair mobility issues, that's all people think about because back of house is mobile. No, there’s the blind community there's the deaf community and so not only just from a mobility standpoint accessibility is accessibility period across the disability spectrum and so. There needs to be some accommodations for people back of house okay if someone's death they can't hear when they come on stage. And so, so captioning you know things that are back of house, and so you know I have become more of a consultant kind of a thing, because it, you know because I am one, I’m a performer, and so I know the accommodations that I expect you know as a performer. You know, and so that gives me a sort of a different angle and a different look for me to be able to come on stage and be able to see okay, and the tech areas. And so that back of house, but I, but just it's just not back of house, the problem with back of house is it's not a part of the Ada building code because Ada is building codes, it is not human centered and so that's why I’m saying it has to be human center not equipment and that's what they're thinking about always huge that they're thinking about equipment.

 

Nadine Vogel: Well, you know it’s like websites right, you know you look at accessible website just because something is accessible does not mean it's usable. It’s a huge difference. Well, this has been fabulous, and we are unfortunately running out of time, so let me, let me if I may and then Norma, I’ll ask you to ask one last question as well, my last question is, you know if there's if there's one or two things that if there's someone listening from the entertainment performing arts industry, what is it you want them to know above all.

 

Myrna Clayton: Above all, we need to go beyond Ada. It's been 30 years. We need to go beyond building code requirements and to make it human centered. Think about if you were in that situation being empathetic walk in our shoes, you know walk into certain circumstance, if even if you're a temporarily, you know disabled meaning you broke your leg. Sure, you cannot get places. You know, and so just think about it that's your regular life everyday experience and so beyond let's go beyond Ada it's time to go beyond it's been 30 years and zero has been done, I shouldn't say zero very little miniscule has been done in 30 years, and so, so that would be for me and then think about show ability and yes it's all about visit we want people to we'd love to be able to partner and collaborate, especially with celebrities.

 

Nadine Vogel: So, can you share your website, or how people can get in touch, please.

 

Myrna Clayton: Absolutely it's simply it's show ability.org.

 

Nadine Vogel: Oh, that is easy okay. Okay.

 

Nadine Vogel: Well Norma, what do you have one last.

 

Norma Stanley: Well, I just was very thankful that you know, Marina was available, and I know that you know as she travels internationally, she does a lot with a disability community in those travels I just want to share just a short brief, you know moments in one of those situations when she was traveling as a US cultural ambassador, and what she did in some of those countries.

 

Myrna Clayton: Actually, we were right before the pandemic in Guatemala, and it just so happens that we were doing a master class and one of the young boys in the in the school had cerebral palsy. And, and whenever he sings, he would sit down and he has a beautiful voice, and so I am oftentimes I will invite persons if I think they're really talented to perform with me on stage during the concerts I mean it's my show, so I can invite you about I want to my microphone I can fight whomever. And so, giving them a platform that they've never had before, and so in this case I invited him to come and perform, and I said it's only one caveat, I don't want you sitting down. I need you to own your challenge because what's going to resonate with people is your voice, and so I need for you to know to stand as best you can and sing and be proud of, who you are and so that was something that was very important for me to instill in him, you know you know don't sit down don't, don’t do that. You're performing you're a singer your stage presence matters you know, and so that was just one I mean I could tell you stories after story, but, but that was the most recent one, it was it was very big you know I think I think that I made an impact on him.

 

Nadine Vogel: Well, you know it's interesting that you say that you think you made an impact on him, but it takes me back to how we started, which is that a 10-year-old boy in church made such an impact on your life and the lives of thousands of people with disabilities and their families and that's what's so amazing. And so, I just I just want to thank you so much for joining us, and thank you for all that you do, and I want to thank everyone for listening I’m sure you all enjoyed this session, as much as Norma and I did, and having it hosting it. This is Nadine Vogel, your co-host of disabled lives matter, and I think Myrna really proved disable lives do matter. And, Norma my co-host darling.

 

Norma Stanley: You guys have a great one it's been a great show and we'll talk to you guys soon.

 

Nadine Vogel: Ok, bye-bye everybody.

 

Myrna Clayton: Thank you God bless you all.

 

Norma Stanley: You too.

 

Nadine Vogel: You too.

 

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 advise 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 Listen Device.

 

S1-Ep8_Douglas_Vogel

S1-Ep8_Douglas_Vogel

April 22, 2021

Disabled Lives Matter

Season 1, Episode 8

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Douglas Vogel

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 with co-hosts Nadine Vogel and Norma Stanley... yay! 

Nadine Vogel: Hello, hello, this is Nadine Vogel your co-host of disabled lives matter, I’m with my co-host Norma.

 

Norma Stanley: Hi everyone.

 

Nadine Vogel: Norma and I started this podcast because well it's not just a podcast it's a movement we want people to really understand why disabled lives matter what you can contribute to show that you believe it and that you help you help people with disabilities be successful and show the rest of the world that their lives do matter and the way to help is not a cause to support or to just provide assistance but it's really to recognize that people with disabilities are people first and have skills and talents like anyone else. There are times, however, that we do need to provide additional support and especially when we're talking about children with disabilities, so I am very proud to welcome today to our podcast Doug Vogel. We've asked him to join us today because he has spent almost the last 30 working with families who have children with disabilities on planning for the future and ensuring that our kids not just have lifetime care, but quality of life so Doug welcome to the podcast.

 

Doug Vogel: Thank you it's nice to be here.

 

Nadine Vogel: So, talk to us a little bit about when we hear the term special needs estate planning, what does it even mean what are we talking about. Well, special needs estate planning is basically just getting your affairs in order so that when you die, and we all will die and statistically you can't beat that the probability of death is 100%. That you, you know can put a plan together to guarantee a couple of things like maybe if you have kids where they're going to go who's going to take care of them where the money is going to go where the money is going to come from who's going to be in control of that money. One of the things that we have to do as parents of children with disabilities or dependence with disabilities is make sure that we have the proper legal planning in place to protect eligibility for certain critical government benefits that might not be available for them, while they're minors, but when they become adults if they're not able to be independent and work then, these benefits are going to be critical as a safety net for them to provide support so generally estate planning twofold there's the legal stuff and the financial stuff and they kind of work hand in hand. And that’s estate planning in general and it's very unique when you have someone with a disability and your family.

 

Nadine Vogel: Why, what makes it unique what makes it different?

 

Doug Vogel: What makes it different is protecting eligibility for government benefits so basically, there are certain benefits that an individual with disabilities, a child or an adult at that point when they turn 18 potentially could be eligible. The first one is called SSI which stands for supplemental security income, which is basically a monthly subsistence that the government will pay a family of a minor child if they qualify to kind of offset the cost of basic needs. And it's means tested, meaning that you can't parents at that point if they have a minor child, they can’t have income and assets that are going to jeopardize this threshold and the asset test is basically $2,000 so if there's $2,000 in in the child's name and the parents make you know, roughly 30 something thousand dollars a year they're not going to qualify but when the child becomes an adult then they qualify on their own. And they don't care about the parents anymore, so if you do basic planning, where you have a typical will more than likely you're leaving assets to the minor child not directly if it's a well done correctly it's in a little discretionary juvenile trust, but that's not considered viable under the eyes of Medicaid and social security so it's going to jeopardize those benefits.

 

Nadine Vogel: So, let me ask you a question, so, even if the child is living at home right, they're 22 years old, they function as a 10-year-old. Their living at home, so what I hear you saying is that that $2,000 limit the government's not going to look at the parents’ income and assets anymore it's really just what's in that child's need.

 

Doug Vogel: Right when they turn 18. Right oh so that's why it's critical to plan a lot of families, you know they think well I make too much money now my I don't qualify these for these benefits. But eventually the child is going to become an adult, even though they might not have the capacity to function as an adult at 18. So, if they have over $2,000 in assets either inherited indirectly or directly the wrong way, that's going to be considered what the government calls dimmable and it's going to disqualify them from benefits. One of the themes that we have as parents, and I say parents, because I have an adult daughter with multiple disabilities so.

 

Nadine Vogel: As does Norma.

 

Doug Vogel: As does Norma, so we you know we live this every day and have for the last 30 years with our daughter. The difference between planning, when you have someone with a disability in your family is, we have a theme that runs through our planning that's different than the typical family and that theme is dependency, we have someone in our family that's going to be dependent on us or someone else when we're no longer here pretty much for the rest of their lives, now, depending upon what your child's abilities are and what their diagnosis is obviously is going to define that. But that's the difference between the way a typical family would plan, because you know we have to provide that support. And, and that strategy and to ensure that quality of life throughout a lifetime and that's why you have to create a legal strategy and a financial strategy that's different and unique to kind of put the best foot forward and stack the deck in your child's favorite.

 

Norma Stanley: Wow. I am so glad you're having this conversation this is like one of my favorite conversations, because you know it bothers me that so many families don't think of this and I’m you know it's something that stays on my mind, all the time, because you know my husband died young and you know, life is not guaranteed, you don't know from tomorrow what's going to happen and that's something that this particular situation. I just don't understand why families are so hesitant, because it seems sometimes a little hesitant to put this thing in place for their child, why do you think that is.

 

Doug Vogel: Well, you know I’ve been doing this for a long time as Nadine alluded to, when we first started and I've kind of asked my families for some feedback and there's a lot of common themes that I’ve heard from them that I could relate to because obviously you know we're parents have dependents with disabilities as well, the first reason people tell me they don't they don't address this stuff is they don't have time. And I can relate to that you know I mean when our daughter was young, she had 11 hours a week of therapy she hadn't nursing she was on machines, you know we still had to work. You know I think in the back of the mind most parents know that this is important but they're exhausted, at the end of the day. And they say you know what I’m just going to get to it tomorrow, and tomorrow turns into the next day, and the next day turns into next week and then next month, and then years go by and parents still don't do this stuff. Another reason why I hear parents don't do this, is they say, you know I just don't know who to choose, if something were to happen to me or my husband or both of us in a car accident who's going to fill our shoes, you know, should it be your sister-in-law, should it be you know another family member. You know, so people vacillate back and forth, and they kick the can down the road, and they don't make any decisions, but what I always tell people is their worst decision is better than the decision that's going to be handed down by the probate court in the state that they live in if they don't have a will, and they don't have any type of strategy. You know it's going to be hard enough dealing with everything, and if you know you're leaving it up to the State to kind of figure out how this stuff is all going to play out and then the bus has already left the station, because now assets are going to be left to your child and you don't want to leave assets to your child, so they have to be depleted to under $2,000 to qualify them for government benefits which in actuality is basic needs.

 

Norma Stanley: Right.

 

Doug Vogel: You know it's important it's a nominal existence really and who knows what government benefits are but it's important to protect because one of the things that we're protecting is the Medicaid piece, which is huge for someone who has a disability, you know I often I often ask people when I speak, and I do a lot of workshops and I speak at schools and organizations and conferences, you know I asked them what they think Medicaid is in their own words. And the first answer people always give me as well Medicaid is for you know older people, you know I remember my mother, you know talking about my grandfather trying to get him qualified for. You know, maybe a nursing home and moving his assets, because he couldn't you know have assets and so on, and you're right but that's a very, very small slice of the Medicaid pie another. Another answer people give me as Medicaid is for, you know, lower income families. Who don't have a job, where they have health insurance and you're right, that is a small slice of the Medicaid pie, but the biggest piece of the Medicaid pie is providing services and health care and support for people with disabilities so that's why it's so critical to protect the Medicaid benefit because, if someone is not able to be independent enough to support themselves in work, they are not going to have the health care to support them and to maintain that quality of life and people don't realize this, but they can only hold their children typically on their health insurance until they're 26. And then what are they going to do.

 

Nadine Vogel: I think you make an important point, though, when you said about the timing right because Norma, you shared with us you know that your husband did pass early and you actually didn't do the planning until after he passed so imagine if God forbid, both of you had passed, together, you would have been one of those statistics who hadn't done that, so I think you know from my perspective, you know what an especially its parent knows, above all else is the what if scenario. Right, what if, and then what's going to happen if.

 

Norma Stanley: that's right.

 

Nadine Vogel: So, you know I think Doug that you've painted this picture of you know what is a framework that we need to understand right. From a legal perspective, but I think that the other piece I’d really like to focus on after commercial break is this issue of the financial. Right, we hear from families, I don't have a money tree in the backyard, so you said, like Doug you know family say I don't know who to leave my child to who can handle it. Another thing that I know we all have heard is well I don't have the money to fund this special need trust right I don't know where the money is going to come from, and I think that that is so important because what I have found in talking with families is even when they figure out the special needs trust of the will or any of that. They can't get their head around the financial and what I’d like you to share when we come back from commercial is in some respects, if you focus on it that's one of the easier things you can actually do. Right, I’ve heard you say you can create a state where none existed before or hey so um let's go to commercial break after just a minute, and as soon as we come back Doug, I’d like you to talk about the funding part of this.

 

Commercial break: And now time for a commercial break.  Did you know, "Success Is Simple?"  When traveling the road to disability inclusion, a company’s success is determined by its commitment, competence, creativity, and often its consultant. Springboard Consulting, a recognized expert on all thing’s disability, is a one-stop shop from assessments and training to marketing, events, and more. Whether delivered in-person or via live-stream, we have what you need to achieve success. Contact us and put your journey to disability inclusion in high gear. consultspringboard.com.  And now back to our show.

 

Nadine Vogel: Hello, this is Nadine Vogel co-hosting with Norma Stanley on today's episode of disabled lives matter. And today Norman I are interviewing Doug Vogel talking about special needs estate planning. Doug before the break we I mentioned something about special needs trust and that's because I'm familiar with it so I’m wondering if you can just take a minute and talk about that and then maybe pivot to the funding and how this all come together.

 

Doug Vogel: Absolutely, absolutely so really the solution that we have as a planning strategy is to create a special needs trust or the legal East term is it's called a supplemental benefits trust.

And it's basically a trust that's created to ensure our government benefit eligibility for someone with a disability and there's no limit to the amount of money that can go in there, if you identify that your child's going to need you know several million dollars to maintain their quality of life over their life expectancy, then, then you can you know have that trust funded with those dollars. It has to be drafted by someone who knows what they're doing so, one of the things that I want to talk about are the pitfalls of planning that I see all the time when people come and see me and they bring in their stuff for me to review when we're going through the planning process where they've gone to an attorney that might be very proficient and maybe general planning and estate planning and tax planning, but they don't know anything about special needs planning. So, there's a subspecialty of attorneys that specialize in doing this, a lot of them are elder law attorneys but they don't have to be, but the majority of them are. So you want to make sure that it's grafted in the correct way to make sure that it's viable under the eyes of Medicaid and social security so basically a trust is a cup that receives what can receive assets, a house, but really to be worthwhile and the life of someone with a disability to provide that support and those resources it receives money. It either gets it now, or it gets it at some point in the future right for most of its it's at some point in the future when it's needed the most. And what is needed, the most when we're no longer there, because as long as we're here and we're healthy and we're viable and we're taking care of our loved one. You know they're going to be provided for it's in the event that we're not here, or we become incapacitated or disable that we need to have a strategy. So that's what a special needs trust it so if you had two children, you would make sure that that one child that has special needs, you would direct any assets that you're leaving to them to that trust.

 

Nadine Vogel: So when we you know I think it's important that in you know Norma you brought something up earlier about you know you had a trust and if you've learned recently and might not have been drafted appropriately and Doug you know I think it's important that you know you're not an attorney you're giving you know you're giving guidance, so that when people go see the Attorney they become familiar with what to ask, right, what to ask for, because I think one of the one of the things that I think scare, a lot of families. And Norma you can speak to this personally is you go to an attorney you have these trust on and then you find out leader if they weren't done appropriately because maybe the Attorney wasn't his or her expertise wasn't special needs planning right.

 

Norma Stanley: Exactly. That’s exactly what happened to me there was an attorney, and it was not done properly, and I didn't find out about that, until much later that was not happy so yeah, please talk about that so many people can avoid that the bottle.

 

Nadine Vogel: Right right the pitfalls right, you know, not knowing who to go to aware so Doug I know I keep we keep jumping around different topics, but can you talk a bit let's talk a little bit about funding. And so, how people make sure that the money is there for the child when it's needed and then maybe we can talk about some of these pitfalls like what Norma experienced.

 

Doug Vogel: Sure, sure well you know getting back to how I opened it up when you, you asked me what the definition of estate planning so there's two parts to estate planning there's the legal side in the financial side. And they actually go hand in hand, you know a lot of people think, just because they run out and they go see an attorney who specializes in doing and it's special needs planning and draft to trust that they've really done sound estate planning and it's a false sense of security because it's only half the estate plan because there needs to be a financial strategy to drive that legal platform because you know you're not just creating a plan to protect government benefits, because you know government benefits are basic needs. It's a nominal existence I don't want that, for my daughter, nor do pretty much most of the families actually every family that walks in my door. So there needs to be a financial strategy meeting their needs to be a way to fund the trust So how do we typically fund the trust if we're not Bill Gates or you know Rockefellers or we don't come from this very wealthy family where we can count on this inheritance being there because of our birthright well it comes from planning and everybody has the ability to plan I don't care, who you are I often tell people I don't care what your economic strata is I don't care, you know, everybody has the ability to plan. It's just taking a look at what you have and how to leverage it in the most cost effective way, so you know you can fund a trust with anything but one of the things that typically is the vehicle of choice because of the way it's designed and because of the guarantees that are inherent in in this way is through a life insurance strategy because life insurance creates assets were no assets exists, it does it income tax free and probate free and, more importantly, it guarantees as long as the policies enforce that the right amount of money is going to be there at the right time. And what is the right time, when you're no longer there so that's why special needs trust are partially funded with life insurance nine times out of 10. And it's not term insurance because term insurance is temporary, term insurance has had has a fit in planning to replace lost income during income earning years and you know, for spouses, while you have mortgages and things like that, but it can't be there to indemnify a trust over a lifetime. That's where permanent life insurance comes in, because permanent life insurance guarantees that that money is going to be there when you pass away whether it's prematurely or it's over a lifetime and there are certain types of life insurance that that a permanent life insurance that that tend to fit nicely one, for example, is called the second to die or survivorship policy. Where it ensures two people typically the husband and wife and it pays out when the second person dies not only conceptually does it work nicely right because that's when the monies really needed the most, it's very cost effective for most families, because they take a blend of the two of them. So, the insurance company can discount the premium generally by about 50% so for families, like us, who have this ongoing theme of dependency. You know, we can get a lot more for a lot less to do what it's intended to do, which is to create this estate, most of us are creating an estate right because we have to plan 30 and 40 years typically beyond our death for our children.

 

Norma Stanley: Wow.

 

Nadine Vogel: That’s important, Norma?

 

Norma Stanley: Yeah, this is wonderful news um you know so what does, a single parent, like me, my husband has already passed on.

 

Doug Vogel: Yes.

 

Norma Stanley: You know what do you do in a situation like that? You know, I’m in my early 60s already and I want to make sure that Sierra has whatever she needs.

 

Nadine Vogel: You look marvelous darling.

 

Doug Vogel: Sure, yeah, I mean you know, certainly a survivorship can fit nicely, and it can work in if there's a couple um you know to kind of create that bigger bang for the buck, but in your situation, and in some other situations, depending upon what the dynamics are it might make sense to do a single life policy like you don't have your husband, so you can do a permanent life insurance policy on your own life, so that when you pass away it's going to guarantee that this estates going to be there to spill over into the trust, so what it does, is it mitigates the risk Norma. So that you know if you live too long, or you get sick and you have to spend down your assets right that, no matter what else happens there's a constant funding mechanism that when you are not there, no matter what your estate looks like. This is going to immediately spill over into the trust, so you know what that number is that something that you know takes planning and refining and you know you have to look at all the other, you know the other variables and stuff and have the ability to plan.

 

Nadine Vogel: I have a question really on Norma’s behalf. So, I heard that if Norma had like a brother, a sister, a sibling someone else that was helping her care for Sierra, that they could actually get that kind of policy where it could be her and her brother that got insured, because after she was gone like say he would be taking care of Sierra.

 

Doug Vogel: You know what that’s, actually I’m glad you brought that up because that's something to consider. And again, that's where we would sit down and kind of explore a little bit more of your dynamic and who's involved in stuff but yeah, I’ve done that, before where there's been siblings that the husband's passed away and, ultimately, you know, there might be a sibling that we can use as a surrogate. It doesn't have to be the parents Norma it can be brother and sister; it could be significant other and significant other you don't even have to be the same sex. You know so as long as there's an insurable interest and it makes sense in the overall strategy that might be a way to do that as well, so yeah thanks. That was great input there.

 

Norma Stanley: That was great input there.

 

Nadine Vogel: And we only have unfortunately a few minutes left and something that is near and dear to my heard, for when it comes to this topic that Doug I would love, if you can address is this concept called a letter of intent or we call it a book of intent.

 

Doug Vogel: Right.

 

Nadine Vogel: You know it's not a legal document it's not a financial product but it's to me it's so important.

 

Doug Vogel: Yes.

 

Nadine Vogel: So, could you talk about that for a couple minutes.

 

Doug Vogel: Sure, sure absolutely yeah, I mean basically what we're doing here is life care planning, you know that's another definition of kind of you know what we're addressing here and part of that is you know the day-to-day things the continuity, so that when you pass away whoever is going to be stepping into your shoes as information so that they can pick up the ball and provide that ongoing immediate care. So a letter of intent is basically a letter of instruction and Nadines right, it is very, very important in the overall plan, just as important as the special needs trust for a different reason because this gives your plan information to those future caregivers it's something that you put together and basically it's broken down into two areas, the first part is kind of like the factual stuff. And the second part is the intense stuff so typically when I help families put this together, I have them create a narrative to kind of open it up and do sort of an overview of you know their child's history when they were diagnosed was it at birth, for example, if they had down since have down syndrome, or was it diagnosed at a certain age, maybe autism is diagnosed typically when they're younger or was it the result of an accident or injury. And then we kind of do a chronological overview of you know what's gone on in their life milestones met not met. You know, education, different things, and then you close it up in the present tense and you describe today as you're drafting this. You know what your child can do independently somewhat independently, maybe assisted for a child their age or an adult their age right, because if you haven't done this and now, you're starting to do planning and your child's 30. Right, you're doing it at that age and then it's broken down into factual stuff right life goes on stuff if you're not here anymore somebody needs to know who your daughter's doctors are. Name, address phone number email, you know if she's still in school where does she go to school, and she industry because she out of district, the special services contact, how does she communicate is she verbal nonverbal does she have nursing. You know, does she take medications you know Community all those things.

 

 

Norma Stanley: I have a notebook, that’s it. But yeah, it's important. Burial, you know I mean I don't want anybody to have to worry, I mean I have insurance, but you know just the details of it. You know what I want, if God forbid anything happens to me and Sierra right all that is covered already so that you know that you just had open up the notebook.

 

Doug Vogel: And that's the other part of the letter of intent is you get to talk about your vision for the future right what it is that you want, but we always in the back of our mind wanted her to be as independent as possible and that's what we've strived to do all these years and, as you know, she is independent, she lives alone in an apartment and with a service dog, but had we passed away years ago you know, we wanted the people who were going to be stepping into our shoes to know that that was important to us. So, you got to write you can talk about your values, religion, you can talk about quality of Life living arrangements so that's what a letter of intent allows you to refine a willing to trust are important for all the reasons we talked about but, but if it doesn't provide that information to provide that level of care and support and advocacy.

 

Nadine Vogel: So, the last thing I wanted to touch on I’m going to come back to you Norma is you know the poor planning. Poor planning comes in a lot of different ways, right here, we don't plan right or your experience of maybe not having the right experts so right, I mean that had to be for you normally that would be.

 

Norma Stanley: Right because I thought I had taken care of it and I happen to be going through, with another financial person and they were like well that's not that's not that's it but that's what I paid them to do right. They weren’t lawyers, they didn't have that same kind of information they didn't understand, so I didn't know that at the time, but now I know it's like oh I’ll share that with everybody like you're saying you know, make sure you have the right people looking at your documents.

 

Nadine Vogel: Absolutely, it’s the right financial people the right legal people whatever, so I am like I just can’t believe we are out of time.

 

Norma Stanley: I know it's great information I could go on forever with this.

 

Nadine Vogel: I know this session has flown by. But, Doug, I want to thank you for joining us today because, again, what is this show this show is that disabled lives matter whether we're talking about a newborn baby we're talking about a young child and adult. But in this particular case we're talking about the parents from day one, acknowledging and taking action to show that we want to have quality of life for our children, because disabled lives matter. So, Doug I want to thank you Norma as always great show I love doing these with you.

 

Norma Stanley: Me to, I have a great time.

Doug Vogel: You’re welcome.

 

Nadine Vogel: For our listeners We look forward to seeing y'all and talking to all of you next week bye-bye everybody.

 

Norma Stanley: Talk to you soon, bye-bye!

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 advise 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 Listen Device.

S1-Ep7_Norma_Stanley_Nadine_Vogel

S1-Ep7_Norma_Stanley_Nadine_Vogel

April 16, 2021

Disabled Lives Matter

Season 1, Episode 7

Co-Hosts: Nadine Vogel & Norma Stanley

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 with co-hosts Nadine Vogel and Norma Stanley... yay! 

Nadine Vogel: Hello everyone and welcome to this evening’s episode of disabled lives matter I’m Nadine Vogel your co-host along with.

 

Norma Stanley: Norma Stanley.

 

Nadine Vogel: My co-host, and this is going to be a really interesting session this evening, the reason for that is that, unlike what we've done in in most of our other episodes we're not going to have a guest, we are each other's guest. Norma and I you know we realize we're special needs moms we have a lot to say, and you know, depending on the feedback we get from all of you, we may find that we do more of these sessions. Norma, you and I are always getting you know, individually questions about all different things related to being a special needs mom, especially because our girls are 29 and 30 or 31.

 

Norma Stanley: Yes.

 

Nadine Vogel: You know, I hate to actually say that because it gives folks some idea of how old we are. But you know it gives us experience it gives us perspective.

 

Norma Stanley: Absolutely.

 

Nadine Vogel: And I think that's something that the younger moms and dads in particular could use to hear you know it's interesting I just got off a call with a group of individuals of four people, all of them are healthcare professionals, all have disabilities. So, there’s a med school student a doctor a nurse and a dean of admissions. And then actually a chief diversity officer of a system and just to you know have these conversations as much as I think their perspective is fascinating, and they thought mine was fascinating as someone who is you know has experienced so many hospitals and health visits with my daughter, as I know you have so let's just let's just shoot the shit you know. What do you think we should start with tonight.

 

NORMA STANLEY: Well, I think, to me, I know I don't believe in things as coincidences and I’ve been a fan of yours for many years and you didn’t know, but I was stalking you. Because you know you were doing all the things I wanted to do in terms of you know, the disability Marketing and with companies, and you know I understood you were a mom with special needs child also and I said now, this is somebody I would love to meet and learn from, and you know, I was going through my own period of not knowing what was going on left from right whatever. And then   I just be grouped in and started coming back into my business, and you know you reached out to me, after my CD and I said wow and you said we have a lot in common, and I said, we really do I always wanted to work with you. And then the doors just opened, I said thanks lord.

 

Nadine Vogel: See, you ask and you shall receive.

 

NORMA STANLEY: And be patient, that was like sixteen years ago.

 

Nadine Vogel: Timing is everything Norma.

 

NORMA STANLEY: Everything, everything, but I’m excited because, yes, you know as a mom my daughter's 32 and yeah, I have no problem saying how old, I look pretty good for my age.

 

Nadine Vogel: You look damn good.

 

NORMA STANLEY: Thank you, thank you, but you know I’m thankful that I’ve learned so much and one of the reasons why you know what we're doing, I think, is kind of important because typically, younger parents who may be going through those challenges and not know that there is you know light at the end of the tunnel. And they can come through this better than they are, they may think they are right now um it does get better with time and you know our children my daughter was born with cerebral palsy and although. You know she doesn't talk like a typical 32-year-old and she had the same comprehension as a typical 82-year-old she is still living a full life she enjoys modeling she's a model she’s a fashion model in her wheel chair and you know she's having the best time and I’m happy that that's what I wanted her and I’m still her caregiver she's not independent, but the process was what I learned what I needed to do for her I can help younger families to maneuver that their own journey yeah.

 

Nadine Vogel: And it is a journey gosh it is a journey. So, I’m curious Norma, when Sierra was born, when Gretchen was born I got handed a poem welcome to Holland, did you get handed that.

 

NORMA STANLEY: I did not.

 

Nadine Vogel: Ah, ok so. Welcome, for those who don't know who are listening to this welcome to Holland well you know I’m just going to do it this way, you know as you're listening close your eyes and imagine for a second that you’re taking your very first trip to Italy, you learn the customs you get the guidebooks you know we're not in a pandemic, obviously. You learn the language you buy new clothes you plan for a year, maybe even longer yeah day comes right, and you get all excited you go to the airport to get on the flight it's a great flight, and then you land. And when you land the pilot comes on and says, ladies and gentlemen, welcome to Holland you think what I was going to Italy, I obviously got on the wrong flight. Just I’ll stay on just take me back and what you learn and what you're told is I’m sorry, Mrs. vocal you know you'll never be able to go to Italy, you will have to stay in Holland. And you know you grieve you see people going back and forth to Italy the flashy clothes and you're grieving for the fact that you can't be in Italy, but what you learn through this journey that you just described is that Holland is a beautiful place. Right, it has windmills, it has tulips and, yes, you wish, you could have gone to Italy, but you learn to appreciate Holland, for what it does, for what it gives. For me that that poem was written about 40 years ago by Emily Pearl Kinsley she was a writer on sesame street at the time when her son was born with disabilities and I gotta tell you a copy of that poem is in my purse.

 

NORMA STANLEY: Oh, can you please send it to me, I’ve never heard it.

Nadine Vogel: Yes, absolutely you know my daughter is going to be 30 and I’ve never left home without that poem and I share it with everyone because to me that’s the perspective.

 

NORMA STANLEY: It so is, it really, really is, and you don't know when you're in that moment when you're young and the babies are young that you'll ever be able to come to it, you know you do and in many cases, you come to a beautifully and that's why my daughter, I know for a fact I wouldn't be doing half of what I’m doing now, I was not that motivated I was you know, I was pretty motivated but not here. I mean I’m doing a lot of things I’ve always wanted to do because I realized she can have the best possible, if I don’t. And I’m a single mother because my husband passed away, her dad, 12 years ago I’m really going for all those dreams that I never really thought I'd be able to do back in the day, because I didn't think I just didn't think about it, it was all a Sierra but now it's like it's about both of us it's about us both maximizing whatever potential there is and living the best life we could possibly live to having a quality of life and helping as many other people do the same thing as possible, who will have children who have families like ours.

 

Nadine Vogel: yeah, you know it's true. I remember, we had some well I’ll say ex friends that after Gretchen was born, you know they were like oh, you know you and Doug you were the perfect couple I heard about your daughter I’m like so what does that mean are we less than perfect I was, I was so confused and upset by that to be perfectly honest and when you have a child born with disabilities you learn who your real friends are. Because many just run. They run for the hills, you know, we had one woman who was afraid you know when she was pregnant, that she could catch whatever Gretchen had I it was just it was ridiculous. And you know I remember that you know they didn't think, Gretchen spent three months in a neonatal intensive care unit, she was born full term, but nobody knew she’d be born with disabilities and she came home with round the clock nursing had nursing at home till she was 13 through a gastrostomy tube till she was 13. Didn't walk or talk till she was about six and that was initially with a walker she entered middle school at a second-grade reading level, but you know fast forward she's a four year college graduate. She lives independently she drives she walks she talks; she will have lifelong disabilities. Lifelong issues, but again it's perspective, and I think you said so beautifully before it's about that our children, no differently than any other parent right we want the best for our kids to have the best possible independence or quality of life that's possible for them and that's going to be different for everyone.

 

NORMA STANLEY: Everybody.

 

Nadine Vogel: Whether they have a disability or not, how many kids do you know or how many people do you know who have adult children who the kids have had no disabilities and then suddenly have a mental health crisis and die by suicide, everybody has something.

 

NORMA STANLEY: Everybody and it's so important to people to realize that African American Community or the alias or all these other communities it's not a monolith. Every family every group individually, you find your own way. But by having people who understand the process and the journey it helps make the journey itself a little easier. And that's one of the things that I’m so thankful that you're part of this year, my exceptional parents celebration that you know to speak on that foot, especially for the younger families most challenging I know that mother's day when my daughter was going up was a very sensitive time for me, and I never shared that with anybody that I was going through it but she didn't know it was mother's day.

 

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NORMA STANLEY: and my whole life revolved around her and she couldn't tell me how she felt about me being her mom it bothered me when I when she was a young girl.

 

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NORMA STANLEY: And, and you know I mean, every now and then I still get choked up about it but our goal was to help other mothers going through the same thing. to feel uplifted and encouraged that they can do this we're in this together and it's going to be okay, and so now is no bad so good, because you know, sometimes that gets Mattel some of these things and mission to make the. Parents we’re reaching out to now and we're hoping that you know it encourages lots and lots of people lots and lots of families.

 

Nadine Vogel: You know, absolutely and you know the other thing is that most people don't realize that there's a divorce rate upwards of 80% in this special needs parent population there's a lot of shame and blame and guilt and all kinds of things you know, and unfortunately it just is what it is and you know I’m very happy to say, you know my husband and I have been together since we were 14 years old.

 

NORMA STANLEY: Ok, we have more in common. My husband, we were teenager sweethearts to. We were married 25 years before he passed away.  But that’s another similarity that's interesting.

 

Nadine Vogel: Absolutely, and you know, my husband and I will be married oh my gosh so we got married in 85 I can't even count. 95 05 2005, 40, 40 something years. I can’t count anymore, but you know it's a long time and you know you became a single mom not because of divorce but because of the death of your spouse and that's another you know component of your life that not only you had to grieve but not understanding, perhaps how your daughter was grieving because she couldn’t communicate.

 

NORMA STANLEY: Well, you know I do remember very vividly when we went to the funeral and my daughter and her dad Stephen they were close they were very close and she didn't understand he was gone she kept trying to get to him. I had to pull her back. That just got to me but, but it was painful also that she didn't really understand because she didn't grieve like a typical child would grieve, I would hear her calling her daddy in her room because that's two words she knew how to say was momma and daddy and eat. First, I was like okay what's going on, because she was having a conversation with somebody in our own little way of speaking and she’s speaking to an angel in the room, with her, so I was able to feel much more comforted by that. But you know there's so much that we think that they can't do, and then you find out they can do a lot more. But at the same and there's so much that they are protected from at least I tried to protect her from it, because she doesn't know she doesn't understand so it's a purity it's a feeling of what typical children don’t. She’s just happy. And that’s a blessing.

 

Nadine Vogel: Right, right.

 

Nadine Vogel: Absolutely, absolutely you know it's when my, when my daughter turned 12. She got into this state of why me because she did know. And you know, there was unfortunately look there's always bullying, and you know school and middle school but hers was even more so, and she really started, you know dealing with why me and I bought her a book that, to be honest, she hated. It was it was written for children, but it was called it could always be worse, and it was trying to give her perspective that as much as she was going through, it could be worse, you know we'd go to an orthopedist office, and she had orthotics on her feet and her legs hurt, but I would show her a child in a wheelchair. And you know she had a G tube, and I would show her child, who was on a vent and you try to give her that perspective. But it's hard when the kids are young, because to your point you know as adults it's hard on us right and it's something that I believe that you know it's not what happens to you in life it's what it's what you do with it, that matters, and I think that that's what you and I have worked also to teach our kids. In whatever capacity, they can do something. That's what that's what makes it all okay that's what brings that quality of life.

 

NORMA STANLEY: Absolutely.

 

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Nadine Vogel: And you know I don't know if you heard about this, but I was like crazy when I heard this, there was a recent study where medical doctors were interviewed. And about treating patients with disabilities and the assumption on their part that with individuals with disabilities have a lesser quality of life. Therefore, the health care disparities, the way in which they treat the patients are different.

 

NORMA STANLEY: Yeah, right.

 

Nadine Vogel: I was just, I was appalled. But you know even goes back to things and I think you and I touched on this not too long ago we were chatting that. Is that when Gretchen would go into a hospital or in some health care system, you know the nurse and the doctor would say hi mom hi dad I’m like I’m not your mom, I’m her mom.

 

NORMA STANLEY: Mhm.

 

Nadine Vogel: Or they would talk to me, instead of her even after I said she can talk for herself she can see, so with Sierra it's different but for Gretchen the assumption, they just make this assumption that she can't do that and I’m like what is that about.

 

NORMA STANLEY: Exactly. Exactly it is frustrating, and you know that's something that I don't understand also is that you know in all these years there's certain things I feel should be in place. That doctor should listen to the mother and the mother says my child is not developing the way they should be, I read any books, when you're expecting all these things and I knew that she wasn’t looking in those first few months the way other children are supposed to be developing that when I was a company I was at the same time, two other mothers whose children were like a month apart from mine and they were saying all the things that their children would do and I’m like Sierra isn’t turning around and turning over, and all this for months and they say she’s going at her own pace, her own pace, it wasn’t until she was nine months old they referred me to a neurologist that said, you know, she had developmental delays and other therapies and then they said at 12 months that she had some CP but you know you would think they'd be able to see this lot younger. It shouldn’t take too long.

 

Nadine Vogel: Right absolutely, absolutely. Well see, Gretchen actually till this day goes undiagnosed, but they knew immediately when she came out and knew something was wrong and they called the neonatologist, but you know it's funny you bring up the book what to expect when you're expecting I lived by that book right, and then it was the one I really lived by, what to expect I think it was during the toddler years or something and I had a love hate relationship with that book. Because I would read what was typical right the different milestones. And if she wasn't achieving them, I got crazy I was calling the doctor and you know I knew in truth that she probably wasn't going to, but I would cry. So, like I would cry, and my husband would say Nadine stop reading the darn book. I was like you’re right. And don’t you know the next morning I was picking the book back up and messing with her head and you know doing all these things again. And it's tough, because you know the barriers for me the barriers in society, relative to disability are not really the, I mean yes there's this physical barrier for people who use wheelchairs and all kinds of things, but at the end of the day, from my perspective as a special needs mom the biggest barrier is barrier of thought. Right, and bias. And people don't want to believe that their bias and not everybody, you know, most people are not trying to be mean but, they just haven't had the same experiences and I don't know how to react or act but that bias then turns into that barrier of thought. And, as a result of that people say and do really inappropriate things. You know, when Gretchen first started elementary school, I remember so she wasn't she wasn't walking she had just learned how to lower herself from standing to a floor and just started walking with a walker. And we had the intake process she was going to kindergarten and they came back with a recommendation that she should go to school in a wheelchair with a helmet. And I said, but she doesn't need a wheelchair she walks with a walker and there's nothing wrong with her head, why would you have a helmet on. But what I quickly learned is because they were concerned about their own liability should she fall or something rather than let her develop this typically as she possibly can, and actually help her  develop way rather than caused her to be a self-fulfilling prophecy and they say see I told you; she could never do it.

NORMA STANLEY: Right. Right.

 

Nadine Vogel: And that self-fulfilling prophecy piece is so upsetting to me because to me it's their way of saying you know I’m the expert, I know, and then they can say after, see, I told you.

 

NORMA STANLEY: Mhm. But like you say, if they would just listen to the mother. And because we know best, I mean I know we're not medical experts, but we are paying close attention to the bulk of our children, and we know when something a little off. And they just don't listen, in my opinion, the way they should listen and once they recognize our thinking all the time that there should be things in place that can help the parents, a lot more than I’m seeing even after all these years after having Sierra still so much not in place at the ground level it just boggles the mind and because I think a lot of families would have an easier time understanding and accepting and you know maneuvering the process. Everything I learned, I learned from another mother.

 

Nadine Vogel: Absolutely.

 

NORMA STANLEY: I had a handle on what was going on with my child.

 

Nadine Vogel: Well, look, as parents, we are as you said, we may not be medical experts, but in truth, we are the experts on our children.

 

NORMA STANLEY: Yes.

 

Nadine Vogel: We’re the ones that are with them 24/7, and you know I remember a neurologist wanted to trech my daughter Gretchen when she was a baby and I said, you know what you'll have to cut my throat to get to hers.

 

Norma Stanley: Okay.

 

Nadine Vogel: And he was like what and I said she doesn't need a trech and he's like and who's the doctor I said on her I’m the mom doctor.

 

Nadine Vogel: Right, and you know, at the end of the day, you know, Norma at the end of the day, it's going to be you it's going to me we're going to be standing and looking at our kids and saying, did we do everything we could to make them the most independent happy healthy kids possible. Those doctors aren't going to be standing there with us.

 

NORMA STANLEY: That's right.

 

Nadine Vogel: Right, and to your point, you know you learned everything from the other moms you know Doug and I had belonged to a support group, a Parents Support Group and that saved our lives. If not for that support group, and we're not really support group kind of people kind but oh my gosh that was, thank goodness.

NORMA STANLEY: Exactly I would not, we weren't those people either, or you know the thing is my family didn't understand because Sierra was the only person that they’d ever known that had that.

 

Nadine Vogel: Same here.

 

NORMA STANLEY: So, they didn't know how to handle so many different things and um it was challenging for them, and like you say they loved her, but they didn't know what to do, and then you know so yeah. And that's what always cracks me up because people think that I’m some superwoman it's like I’m just being a mother. This is how I know how to do it, I don't know you, it’s not that serious.

 

Nadine Vogel: Right. But you're right Norma, you know your just being mom right, you move forward because you know when something like this happens, you either can move forward, or you can just crash and burn. And, if you don't move forward, then what message are you sending to your child. But if you do move forward, like you've done and have so many successes, then your child sees that and can model and emulate that for themselves, I always told Gretchen you know someday we won't be here. I need you to develop a thick skin, I need you to become a self-advocate in whatever way you can and let me just tell you she's taking it to the enth degree, she could use a little less of the advocate. Because I gotta tell you Norma, she uses it with me. She uses it with me, she uses it with everyone at work, so sometimes it goes a little overboard but at the end of the day we're not going to be here for their entire lives.

So, what is it we can do to ensure that in whatever capacity, they can speak for themselves or that we put people in place who can emulate what we've set as standards and follow that after we're gone?

 

NORMA STANLEY: That's right and they’ll put all those things in place so that we know you know the trusts and the person who would execute trust and all the things that we know to do you know what it’s still my prayer that if one of us has to go that she goes first, although I would love to be here, but I don't want I can imagine somebody else taking care of her.

 

Nadine Vogel: You know I have to tell you I have had so many parents say that to me. They hope that the child goes first, and you know it hurts my heart. It really hurts my heart to hear that and it to this day. But, I understand.

 

NORMA STANLEY: Well, let's put this way, I know who I am with her. You see how I dress; she dressed the same way but they're very stylish. Her level of quality of life, such as not even typical cousins you know they just don't have the same kind of opportunities and I want it to stay that way and I'm not sure if it will, if I’m not here.

 

Nadine Vogel: No, no, I understand.

 

NORMA STANLEY: Even with her extended family her aunts or uncle's or you know, perhaps other I don't know so I believe me, I’m getting up in age you know I’m in the early 60s and now it's like I just pray that I’m healthy and you know stable enough to be able to do what needs to be done to take care of her as we both age.

 

Nadine Vogel: And that's look, that's just our reality right.

 

NORMA STANLEY: Exactly.

 

Nadine Vogel: That's our reality, and you know it was years ago Norma, there was a program and it was a high school graduation and all the all the children that were graduating all the students graduating all had disabilities fairly significant disabilities. And they had some media there, it was some really well-known school private school, and all the parents were crying. And so one or two of the parents had gotten interviewed and the reporter said. Oh, you know those must be tears of joy to see your child graduate and you know, not everybody thought they could do that, and you one of the moms I remember, she said, you know, yes, they are tears of joy, but actually their more tears of sadness. And the reporter was taken back like what, how could you say that, and the mom said, you know when they're in school they're protected. They have they have their day accounted for they have support they have therapy now what. Now what my child’s an adult they can't go into you know, a facility that's for older people, you know daycare kind of thing for elderly. They can't get a job, what on earth are they going to do, I can't if they just sit home all day and do nothing to watch TV then then that's no quality of life, oh my and everyone by one, the parents echoed that, and you know it just again is another point of reality, you can't just lump special needs parents all in one right just like you can’t lump people with disabilities all together. You and I have similar paths, but certainly because our kids as they've developed to develop differently, the paths are different. But at the end of the day the issues are so much the same they're just you know different levels of it but their so much the same. And I want to make sure that any parent, special needs parent, that's listening today that they know that they can reach out to us. That they can attend your event that's coming up its virtual because it's that important it's that important for us as moms for the dads for the kids.

Yeah, it's tough and you and I know it, it's tough.

 

NORMA STANLEY: It's tough but it's a beautiful journey. You know all of her accomplishments their invested in my brain. And her grandmother, her paternal grandmother still here my mom passed on, but you know it's been a beautiful journey, and I think just her being here has helped the rest of us to maximize our potential and our realization that hey you know what. Go for it, because you know, like. make it happen let's see what we can possibly do and make a difference and so I’m hoping that that's what happens with all of us.

 

Nadine Vogel: Well, I'm glad you said that, because for our listeners who are not special needs parents, but maybe the grandparents the aunts the uncles and friends. You know here are words think about how you can reach out and support that sister brother cousin niece or nephew or perhaps you know you're not a family member but you're a neighbor of know right get perspective or maybe you're an employer and you don't realize that almost 10% of your employee your workforce are parents like me like Norma and think about understanding some of our unique needs and how you can better support us because I gotta tell you  Norma I know you're going to know this, we are the best at multitasking, at innovating and figuring out issues and know if someone says no that just makes us work that much harder.

 

NORMA STANLEY: Absolutely.

 

Nadine Vogel:  And so, the audience is so big right that we all need to come together and find ways to support and especially now during covid, I mean that's just added a whole other layer. So, we've had so many special needs parents tell us you know, yes, my kid is being homeschooled like other parent’s kids, but I don't know anything about teaching special education or my child is on the spectrum and they can't sit still at the dining room table for an hour two at a time, so I can get work done. Right, or they're on a ventilator a feeding tube and there’s medical things that have to take place and I can't get someone in the home to help. I mean so again, even that has added a layer of complexity.

 

NORMA STANLEY: Sure, has and it's a real situation that people need to understand.  You know, like you say try to provide support wherever possible, I know, when I you know Sierra was young, I lived in New York, I was here in Atlanta and you know, like you say not all the girlfriends, not everybody can handle it, and if you could just have you know, having a weekend I didn't know about respite until she 14 years old.

 

Nadine Vogel: Oh my gosh oh yeah oh my gosh.

 

NORMA STANLEY: Exactly, and so things like that you know, having a weekend debate with you can just go with your husband to de-compress a little bit those kinds of things are putting. So yes, family members friends who can take the style for a few days or a week. That’s amazing.

 

Nadine Vogel: Oh yes, absolutely. And again, you know sometimes they say don't sweat the small stuff. But when you have a child with a disability there's a lot of big stuff. But you still have to sweat the small stuff too because it's that important the small stuff if you don't pay attention can become big stuff. So you know, making sure that while you're taking care of your child you and your spouse take care of each other or taking care of other children, so the rest like you talked about, or you know going out to dinner once a month or whatever it may be oh my gosh Norma you know what, talking to you, I feel like I’m talking to a psychologist I mean really.

 

NORMA STANLEY: We’ve had a good time talking together.

 

Nadine Vogel: I know we're like we're like each other's little support group. But, but I, my gosh we already ran out of time which is amazing. So, what with Norma and I would like to do is here from you, our listeners. And if you would like to hear more about this really or any topic. You know, let us know we can do more sessions, we can focus on very specific topics from a mom or dad's perspective or whatever it may be so just let us know, but for today this was disabled lives matter and again remember it's more than a podcast it's a movement and I just want to thank you Norma for being my co-host, for being my friend, and we will see you next week.

 

NORMA STANLEY: Thank you and we'll talk soon.

 

Nadine Vogel: Okay bye everybody.

 

Norma Stanley: Bye-bye.

 

That was such an impactful episode, that we would like to end with a reading of the essay mentioned during the podcast.

 

"Welcome to Holland" is a prominent essay, written in 1987 by American author and social activist Emily Perl Kingsley, about having a child with a disability.

The piece is given by many organizations to new parents of children with special needs.

And it goes like this...

 

 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice.

You may learn some handy phrases in Italian.

It's all very exciting.

 

After months of eager anticipation, the day finally arrives.

You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, "Welcome to Holland."

 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!

I'm supposed to be in Italy.

All my life I've dreamed of going to Italy."

 

But there's been a change in the flight plan.

They've landed in Holland and there you must stay.

 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.

It's just a different place.

 

So you must go out and buy new guide books.

And you must learn a whole new language.

And you will meet a whole new group of people you would never have met.

 

It's just a different place.

It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while and you catch your breath, you look around...

and you begin to notice that Holland has windmills...

and Holland has tulips.

Holland even has Rembrandts.

 

But everyone you know is busy coming and going from Italy.

And for the rest of your life, you will say "Yes, that's where I was supposed to go.

That's what I had planned."

 

But... if you spend your life mourning the fact that you didn't get to Italy,

you may never be free to enjoy the very special,

the very lovely things ...

about Holland. 

 

copyrighted 1987 by Emily Perl Kingsley. All rights reserved. "Welcome to Holland"

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 advise 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 Listen Device.

S1-Ep6_Martha_Anger

S1-Ep6_Martha_Anger

April 8, 2021

Disabled Lives Matter

Season 1, Episode 6

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Martha Anger

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 with co-hosts Nadine Vogel and Norma Stanley... yay! 

Nadine Vogel: Hello, and welcome to today's episode of disabled lives matter, this is more than just a podcast, this is a movement, and we want you all our listeners to become a part, an active part of this movement I’m Nadine Vogel your co-host along with my co-host Norma Stanley, Norma, Say hello to everybody.

 

Norma Stanley: Hi everyone so glad to be here today.

 

Nadine Vogel: Yeah, and today we're joined by Martha Anger Martha is a deaf filmmaker and actor and actually, she's a jack of all trades. I've learned that she has talents, above and beyond, that most of us only wish we had.

 

Nadine Vogel: She also reminds me of me and that she has lived in I don't know, six, seven different states, every time I talk to someone, and I say where I am like when did you move there. So, Martha, you and I have a lot in common there.  Let's just get started right on my first question Martha is, how has being a deaf media filmmaker professional impacted both your personal and your professional life.

 

[Martha typing response]

 

Nadine Vogel: And I know that’s a big question!

 

Martha Anger:  I grew up always want to be a filmmaker because I wanna change the world through our lens and our deaf culture way of life. Also, I grew up have grassroots, but I gained more networking through my profession as a deaf media and filmmaker plus actor. I was born with duty. What does they impacted my life is that I share my story literally impacted others change their view of deaf world by working with me on film set or any field. We built a bridge to work together, learn and grow. Change their view and attitude on deaf and people with disabilities but what’s bonus for me that I am strong person, fearless full of life, not afraid to break through so many obstacles that is what made me strong and successful because I wouldn’t let anyone tell me no to my passion and dream.  

 

 

Nadine Vogel: So, Martha it sounds like you're saying you grew up always wanting to be a filmmaker because you wanted to change the world through our lens of deaf culture and your way of life, I think that's really important you also saying that you grew up with you know from a grassroots perspective gaining more networking through your profession it's a definite media filmmaker and acting. And you know I think that's so important because so many of us when we're young don't know what we want to do in life and don't know you know who we want to be, and the fact that. You know you feel strongly and felt strongly about that from the beginning is really, really important um it also you know you're saying that would impacts your life is that you share your story literally as it impacts others. And you get to change others view of the world by working with you on a film set or in any field which, which I think it's so important because. You know we all want to leave a legacy right we all want to have impact in life in some way, shape or form, and I know you talk about that you build a bridge to work together to learn to grow and that's important. You know, at my company it's springboard We talk a lot about changing people's views and their attitudes you're doing that about people who are deaf and with disabilities in general.

 

Norma Stanley: Yeah, and I just have to say, this is Norma, you know I love. What we're learning just by getting to know Martha and the work that she does. More about the deaf Community it because we just had an opportunity to work with her at an event where she held a master class on def improv for an organization called show ability and that was a really interesting interaction between the people listening and it was on a zoom call, and you know they did skits and everything and we did have an interpreter to help out with that, but it was a lot of fun and that was something that was new to me So how do you, you know, in terms of accessibility. What challenges have you been able to overcome and what would you like to see more of technology is helping but is that enough.

 

[Martha typing response]

 

Nadine Vogel: While we wait for Martha to answer that I think what's really so important is that she considers herself and we obviously know that she is an extremely strong person, you know she's full of life she's fearless and she's not afraid to you know go break some ceilings. You know, with all the obstacles, I always say that people with disabilities are often even more successful because of the adversity, that you go through, and that you deal with. I know this is going to sound odd, but I often will say you know I wish adversity of different types on people when they're young. Cause it will help them learn, you know for the future right know, like you, like you say Martha no one's going to you know tell you what your passion or your dream is going to be about so in terms of what normal was asking what your thoughts are.

 

[Martha typing response]

 

Norma Stanley: This is a learning experience for all of us.

 

Nadine Vogel: Absolutely, and you know, we should tell our listeners Norma, that you know what we're doing today is really about accessibility and inclusivity.  Because I want folks to know how we're doing this is utilizing not just captioning. But chat feature so because we don't have an interpreter on screen with us, and we are still communicating effectively and communicating in a way that everyone is comfortable. From Martha to Norman to myself and all of our listeners, and so I think this is an important lesson as well um you know it's always nice when it's not even intended, but to get to teach at the same time.

 

Norma Stanley: Absolutely teachable moment.

 

[Martha typing response]

 

Martha Anger: I just want everyone to treat us the same how we want to be treated… we don’t need their pity because they don’t understand being deaf or person with disabilities. Accessibility is very important for everyone anyway. The main problem with accessibility is related to ADA law, ablest work in ADA law that doesn’t have any PWD or Deaf person to work in that field to help to change the whole system to 100% equally accessible for all

 

Nadine Vogel:  So, I think Martha, you know I, I agree with you so much, I just wanted to treat everyone the same have everyone be treated without pity right, and you know just understand that, just because you're deaf or you have a disability doesn't mean that you're less than in any way. That is so important, you know what I actually was being interviewed on a podcast earlier today about leadership and people with disabilities, not focused on being hired and higher did entry level jobs right but being leaders running the companies being the executives why aren't we talking more about that. And I think Martha to your point, you know that's because we look, we have bias, whether people want to admit it or not. They have by a bias turn into right it's a pity, and to oh poor Martha you know I need to help her and what we need to realize is that it's really more a barrier of thought. Right and a barrier, the action relative to thought, because if we're accessible and we provide accessibility and whatever way, that means we immediately remove those barriers right we put ourselves on equal footing. We talk a lot at Springboard about you know equality doesn't mean that you treat you know that you have to treat everyone exactly the same. Like you know we can provide captioning we can provide chat because at the end of the day, it's about giving everyone the same ability to be successful. Absolutely, because it's you know people talk a lot about diversity Martha's you are, you know, is its inclusion right and you're the perfect example of that So let me ask you this, I know that you've been involved with sign one news I believe you're an anchor there, which is so cool So what has that experience been like for you.

 

Martha Anger: different.

Nadine Vogel: different, very different, okay.

 

[Martha typing response]

 

Norma Stanley: I’ve got to say that I am now encouraged to learn sign, signing.

 

Nadine Vogel: There you go well you know the springboard team; we always had an annual offside team meeting and at one of our meetings we had someone come in and teach us sign language. I have to be honest that I don't remember much I barely get through English. But we did we did do it, but I, you know, while we're while we're talking about this, and while we're you know just waiting for Martha to respond, you know, one of the other things that she had said earlier that I’d like to share is that. You know, in her perspective, the main problem with accessibility is related to the ADA law.

 

Norma Stanley: uh huh.

Nadine Vogel: That it doesn't have you know that most ableist work in ADA law but don't have disabilities or someone who’s deaf who works in that field. There's a saying you know nothing about us without us.

 

Norma Stanley: That's right.

 

Martha Anger: experienced random roles. Me as an anchor, I’m supposed to stay neutral to deliver news. Without involving my personal bias. While as an actor, I memorize the script, acting on set and become someone else. So, News media I did a lot of report, asl gloss from English translation to ASL. News is more of reality experience for me, and I met so many important people in the news world and I also met important people in film.tv industry… wonderful experience

 

Nadine Vogel: And I think that Martha you know that's what you're really referring to and in order to ensure that we are 100% equally accessible again we have to be inclusive right everybody has been part of the conversation. And in terms in terms of the question of you know what it's like to be an anchor on sign one news, one of the things that Martha you indicated, is that news media and film and TV are all really different. We tend to lump them all together, but that they're really, really different as an anchor different role right you're supposed to stay neutral to deliver the news, just like we are you know here although I think opinions are expressed. But as a news anchor you know Martha you've been clear you have to not have personal bias. But when you're an actor memorize a script acting on screen and portraying someone else, so a news media, you know you do a lot of reporting. You have asl you know translation. But that news is more of a reality experience for you. And that so many really important, you know cool people that you get to interview, I mean it's like us right Norma you and I are interviewing Martha. Pretty interesting that you get to have these experiences because you're not my understanding is that you're actually not only an anchor you get to edit the shows and feature stories, which is totally cool and then I was really on your skill sets are amazing to me because I think you said you also shoot camera like a multimedia journalist ah, how do you do all that, I’m exhausted just hearing about all this.

 

[Martha typing response]

 

Martha Anger: I am not only anchor; I edit the show and feature stories for S1N Also I shoot camera like a multimedia journalist. most are reality job Acting and filmmaking is like my personal, my life story I wanna share to the world. I have ADHD so these jobs are perfect for me

 

Nadine Vogel: But I know it's important that you share your story with the world, and I, and I agree, I think that that's really important and Norma you and I have talked about this, you know sharing stories whether it's our personal it's our kids.

 

Nadine Vogel: Oh, Martha says she has ADHD, so all these jobs are perfect for her. I get it, I get it.

 

Norma Stanley: If I didn't know better, I would think you were like me, because you know we all have like 10 jobs and that's just the real deal we just, it's how we do our thing.

 

Nadine Vogel: Absolutely and it's so funny that you were just you know, making this motion of chop chop chop chop chop and at our office they tease me all the time and they do that cause I go from one thing to the next to the next.

 

Norma Stanley: multitasking that's what we do.

 

Nadine Vogel: Absolutely. But Martha what do you think if you think about the deaf community and you think about accessibility. What issues, do you still encounter I would say, on a regular basis, you know generally and then or there's some things that you encounter more specifically in the entertainment industry.

 

[Martha typing response]

 

Martha Anger: Most common I have encountered relate with asl interpreters’ issue among with these entertainment industries Not 100% accessible. because that is where we are at deadlock because of ADA Law Wasn’t really clear and doesn’t really work for DA for 30 years. most common problem is with “financial” how to pay interpreter Who is responsible to pay for interpreter. me as client or the production company.

 

Voiceover: And now it’s time for a commercial break.

 

Voiceover: Welcome, welcome, welcome the Springboard Foundation is proud to extend scholarships to full-time undergraduate college or university students who have a documented disability of any type. Our scholarship recipients attend colleges and universities across the United States and are currently registered with the college or university disability services office. Please visit the springboard foundation website for additional information and the application.

 

Voiceover: And now back to our show.

 

Nadine Vogel: Norma, I'm assuming this doesn't surprise you, because it doesn't surprise me. That the most common that you've encountered, you know relate to accessibility. But, again, you know how do we get around this and she said that you know Martha you're pretty clear that nothing has been 100% accessible um. I'd like to ask a follow up question, if I may, because you say it's because the red dead wrong because of the Ada so when you say that what do you mean being at a deadlock due to the Americans with Disabilities Act.

 

[Martha typing response]

 

Nadine Vogel: And I, and I asked that question because I think many ada is you know oh my gosh fabulous all the things that people, and it has but obviously you know we've come a long way there's a lot more to do.

 

Martha Anger:      Cause most private companies will not pay for interpreter while public companies that are required by ADA lawBut most experience I had was positive cause it’s depend on an Individual… I bust my ass fighting for access and educate them about ADA lawIt’s exhausting and frustrate because when they didn’t want to deal with asl interpreter cause they didn’t do enough research or hire deaf consulting service .. that’s how they ended up cast hearing actor playing deaf role

 

Norma Stanley: And she's talking about the paying for the interpreter people tend not to think to include interpreters in general it's not it doesn't come to mind as readily and that's something that companies need to understand that they need to probably pay more attention to.

 

Nadine Vogel: Right so, so, they'll say so, I think, Norma what you're saying is that the companies will say Okay, I get it, you need an ADA interpreter, a sign language interpreter that’s fine but we're not paying for it will just allow you to bring one in is that what is that what you're saying.

 

Norma Stanley: MH.

 

Nadine Vogel: that's you know I mean at Springboard we work with really large global corporations.

 

Norma Stanley: uh huh.

 

Nadine Vogel: And it's interesting because I have found for conferences for big events evenings if someone needs to send me which interpreter it's not an issue they certainly provide it, and they pay for it.

 

Norma Stanley: Right.

 

Nadine Vogel: But I think it's when one individual need something let's say for something like this. that the company might say, well, why are we paying for this for one person, instead of a big group that's what I’m hearing and that's really upsetting to me because this podcast is about disabled lives matter.

                                                  

Norma Stanley: Facts.

 

Nadine Vogel: And if someone is not providing access so that Martha you can equally participate or equally you know. Successfully get a job,  communicate, then what they're saying is disabled lives don't matter and, and this is the thing Norma,  that you and I keep, we keep hearing.

 

Nadine Vogel: In every one of these episodes. Yeah, we just keep hearing it.

 

[Martha typing response]

 

Martha Anger: Our mental health is badDisabled Lives Matter!100% accessible.. 14th amendment been forgotten

 

Nadine Vogel: And Martha I, I agree, it has to be, it has to be exhausting.

 

Norma Stanley: Right, it definitely would impact your mental health.

 

Nadine Vogel: Absolutely and you know, the lack of understanding here, and I think that you're right the companies aren't willing to hire let's say like a springboard consulting right to come in and educate them and help them understand what's needed.

 

Norma Stanley: Yeah.

 

Nadine Vogel: And the other thing Martha that that I know that is very frustrating and I’ve heard this from many people in the entertainment industry is hiring in this case hearing actors playing someone who is deaf. I know that Marlee Matlin has spoken about this, many, many times right. And I think it goes beyond death, I mean across all disabilities and you know you like you said, the 14th amendment has been forgotten. And that's just that's just sad that that really is and what I don't understand is you know we've had these lessons throughout life. For different groups different minority groups and we haven't learned whether it's women or its people of color right, you would think.

 

 

Martha Anger: Black and POC face Systemic racism and we face Systemic oppression

 

Norma Stanley: They’re not paying attention. And I wonder if it sometimes comes down to, do they really care right, you know, like you, saying, do they really think these various communities matter it's sometimes it always comes down to the you know I guess the money and it's sometimes having to go past just being able to make money.

 

Nadine Vogel: And your right Martha you know people who are black and other communities face systemic racism and then the disability Community you're facing systemic oppression. Right, I hear you, we hear you. I want the world to hear you, hear what you have to say.

 

Nadine Vogel: So, let's switch gears a little bit and instead of talking about you know the change instead of talking about what has been going on and what's not so good. What would you say, are the opportunities that you see opening up, let's talk about the flip side of it.

 

[Martha typing response]

 

Martha Anger: Good news, the more opportunities been opening up

 

Norma Stanley: Well, that's a good thing, there are more opportunities opening up.

 

Nadine Vogel: Yay! I always feel that way that when we talk about some of what I call the bad and the ugly right, the things that aren't going so well there's almost always a flip side of things that are going well.

 

Norma Stanley: And you have to live with them, sometimes, but they do exist.

 

Nadine Vogel: Absolutely and normal you and I as parents of adults with disabilities, we know that all too well don’t we.

 

Norma Stanley: Absolutely.

 

Nadine Vogel: And sometimes it's exhausting having to look for that.

 

Norma Stanley: Yes. But that's what keeps you sane too because thing on the positive rather than you know what you can do rather than what you can't do that helps you get through the day and helps you and your children maximize their potential, at the same time.

 

Martha Anger: Because the Hollywood and Netflix industry started to hire Deaf consulting service or PWD consulting service to work with them on set to help bring out authentic representation on screen

 

Nadine Vogel: Absolutely and Martha your right, I’m so glad that you brought up Netflix because Netflix just committed, pledged 100 million dollars to issues related to people with disabilities on screen. And I believe they have hired some consultants to help them with some of this work and bring out. You know what Martha what you refer to as authentic representation.

 

Norma Stanley: Yep.

 

Nadine Vogel: And we were having this conversation I think Norma, was it with, we were talking to David Renaud from the good doctor.

 

Norma Stanley: Yes.

 

Nadine Vogel: We were talking about the same thing authentic representation, and what that really means. But you know what’s interesting is that when someone is deaf like you are Martha it's you know someone's going to know right not to look at you, but once they start communicating, they will know. But what we find interesting is sometimes with a disability, unless you stated, the person really doesn't know and then we find individuals are fearing if they should talk about it or not, and how to talk about it, and you know will that hurt me will that help me. What are your thoughts with that?

 

[Martha Typing Response]

 

Nadine Vogel: As you take a really deep breath. Right, if you do it, someone’s going to bite you in the behind is basically what you’re saying. And I think a lot of people are really concerned about that.

 

Norma Stanley: Yeah. I think that's happening in a lot of companies also with some people they don't self-identify as a person with disabilities, because they may think it may impact their jobs

 

Nadine Vogel: Right, right, absolutely, and you know the good news is that you know, at an organization like a Netflix it’s not which is great, and we can use them as a model. But nonetheless it's not an easy you know goes back Martha to what you said earlier it's exhausting. Right, it's exhausting to have to work at it so hard, because it takes away from your work as an anchor it takes away from the time and energy you can spend on acting. And I think people need to pay attention to that I think that's really, really important.

 

[Martha Typing Response]

 

Nadine Vogel: Poor Martha her hands are going to fall out at the end of this.

 

Martha Anger: Generally, they shouldn’t fear us, we would be more appreciated when they reach out to us for consulting, immerse into learn our culture and community to help them  to connect and develop a bridge to create more opportunities, more understanding, be patient, educate, they need research, reach out to the community.. that will start somewhere that will lead to open opportunity for ALL

 

Nadine Vogel: I just know at the end of the day of typing on a computer all day long my fingers and my hands are killing me and we’re asking you to do this fast and furious. So um and I think you're right, you know Norma I mean we see this all the time right, Martha is saying that people shouldn't fear, people with disabilities.

 

Norma Stanley: Right. I know and that's a challenge and it's an educational situation it's a sensitivity situation and it's you know. it's the cost of situation, I mean why can't we all just get along.

 

Martha Anger: Absolutely.

 

Norma Stanley: Exactly.

 

Nadine Vogel: No, it's just sad and you know, you can preach, people have to be willing to educate themselves, they have to be willing to embrace difference because difference like we said earlier doesn't mean less than. They need to be willing to be patient which people are not today, everything is multitasking and running. And I think we have to; we have to reduce this fear of just directly engaging and talking to people with disabilities. And you know, like Martha asking you, you know, we should tell everyone at the beginning of the podcast we asked Martha, what is the best way for communication, how would you like to do this it wasn't well here's how we do it if you can't do it then sorry, we can't interview you. it's about understanding what you want, as someone who’s deaf and what you need to get your message across, just like anybody, we would interview. And to do it in a way that's respectful right that provides you know, dignity and respect throughout the entire process, and that should not be something that we fear to me that's just that should just be part of the human condition, I mean my goodness.

 

Norma Stanley: Exactly. Should be running to it and not away from it.

 

Nadine Vogel: Exactly, exactly I mean I don't mean to minimize it in any way, but really. People are people are people. My goodness. So, let's ask this Martha, if we had the ability to put you in front of 10 corporate CEOs. Entertainment industry, automotive industry, it doesn't matter. What would you what tips would you give them to better connect with people in the deaf community either as employees or as customers or both.

 

[Martha Typing Response]

 

Nadine Vogel: So, just to share with everyone as Martha was getting ready to type again her poor fingers are so tired. She kind of wiggled her fingers and kind of stretches them as if we’re watching a pianist. Right, you ever see that what a pianist does before they go into. And I’m a piano player, so I pick up on that.

 

Norma Stanley: Okay.

 

Nadine Vogel: And no, I'm not going to play piano on screen.

 

Nadine Vogel: You know Norma, what would be really cool one day. As I’m saying I’m not going to play piano on screen. I think it would be really cool, and you and you know these individuals more than I do, to bring together some musical performers.

 

Norma Stanley: Sure.

 

 

Nadine Vogel: Who have disabilities and we can interview them a little bit but let them perform on the podcast how cool would that be.

 

Norma Stanley: That would be very cool. Absolutely.

 

Nadine Vogel: Right, let’s do that, I hope I hope our listeners, you know if you're listening to this podcast and you like that idea let us know, tell us, because we want to hear from you, because you know I might think it's a good idea, Norma might think it’s a good idea, but we want to make sure you think it’s a good idea. As we’re talking about that though, one of Martha’s first tips to our imaginary CEOs.

 

Martha Anger: To provide them an access to learn about me.. it would be ALOT EASIER if they hire ASL interpreter to save a lot of time Because in the entertainment/film tv world.. time is money As for the employers— They need to focus on our TALENT not our disabilityThey need to meet us halfway

 

Nadine Vogel: She says, first of all, as deaf people or individuals when we stand in front of 10 CEOs, we're not a group, but rather we are 10 individual people. I think that's really important. Right, I’ll bring my paper and pen ready or type in my mobile I’ll be prepared I’ll bring my press kit package and hand but I'm an individual doing that and that's really important, because often companies will lump everyone with disabilities together as a group right, but as Martha says, you know she's going to come over prepare.

 

Norma Stanley: Mhm.

 

Nadine Vogel: So, another tip, is to provide them access to give people in your company access to learn about the deaf community. Obviously, it would be a lot easier if they hire an asl interpreter and it's saves a lot of time. But we have to remember that it’s really important like we said earlier right, it's really important to educate entertainment film TV film and TV world time is money. Right, I mean time is money anytime and from an employee standpoint Martha’s asking that you focus on their talent. Not the disability right let's find a way to meet halfway. Because Norma, you and I have talked about this right companies are looking for top talent for innovative talent. For talent that's going to stay right, you know that’s not going to leave after six months. It shouldn’t matter if that talent speaks with their hands, they transport on wheels right. It shouldn't matter at the end of the day, what matters is that Martha is an amazing actress she's an amazing actor she's an amazing anchor on TV right that's what we want, we want amazing people, it shouldn’t matter how they come to us what form they come to us in. And I think from Martha’s point is that if CEOs will embrace that then they're really saying is that disabled lives do matter and especially so at their companies.

 

Norma Stanley: And I hope to see more companies embracing that concept and that whole reality, because it just has to and just like the African American Community or any of the other community, they're not a moralist their individual situations everybody is a little different same thing with the deaf community in the game has been community all of these communities, and we have to embrace the differences and see how they make everything better.

 

Nadine Vogel: Absolutely, absolutely.

 

Martha Anger: It is ok to discuss uncomfortable conversation so that way we can grow and learn. Also, I wanna add that the employers need focus on our talent not disabilities. when HIRED then we can move forward to next step with “accommodation”

 

 

Nadine Vogel: Oh, my goodness, this has been so amazing, Martha I wanted to thank you so very much for joining us today on this podcast this movement of disabled lives matter, I can tell you that, at least for me this conversation is going to impact people in ways that I think they're not ready for but they didn't think they'd be impacted. Right, because just by sheer fact that we did this podcast in the way we did it. I think says a lot and shows illustrates clearly that accessibility can be done, it can be done in many ways, it can be done in the moment and be really successful for everyone so with that I just want to say again, thank you Martha, we wish you the very best of luck in all of your roles your many, many roles, this is Nadine Vogel, co-host of disabled lives matter. And Norma, thank you for being my co-host.

 

Norma Stanley: Thank you and I look forward to the next show you have a great week.

 

Nadine Vogel: Absolutely bye-bye everybody.

 

Norma Stanley: Bye bye.

 

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 advise 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 Listen Device.

 

S1-Ep5_Yvette_Pegues

S1-Ep5_Yvette_Pegues

April 1, 2021

Disabled Lives Matter

Season 1, Episode 5

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Yvette Pegues

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 with co-hosts Nadine Vogel and Norma Stanley... yay! 

Nadine Vogel: Hi everybody, this is Nadine Vogel your host of disabled lives matter and joining me, as always, is our fabulous, gorgeous co-host Norma Stanley. Hey Norma.

 

Norma Stanley: Hi. how are you guys doing today?

 

Nadine Vogel: Good. How are you?

 

Norma Stanley: I'm wonderful thank you.

 

Nadine Vogel: So, we have a fabulous guest this evening don't we.

 

Norma Stanley: Yes, we do.

 

Nadine Vogel: Yvette Pegues, Yvette Pegues you are joining us with so many accolades and, and some in particular, that being that were you know, during women's history month I’m like wow time is good, this is this is appropriate. So, tell us a little you know I could steal your thunder by one do that because there's just so much going on with you so tell us a little bit about yourself.

 

Yvette Pegues: Sure, no happy to tell you more about myself and happy to be on this podcast we need today so much to say I’ll start with the fact that I came into my adult career as an engineer and left as an advocate, not something I originally planned, but as an engineer at IBM continuing my education for a terminal PhD at Harvard, I thought life was great. Until it wasn't and that came by way of a disease that I was born with I did not know that I was born with a brain condition, it was a malformation well I only found out about later went into brain surgery to fix it since I was told my brain would fall into my spinal column if I did it. Through brain surgery, I had the spinal cord injury I can't say if it was a nicker a seizure, but I walked into surgery, and never walked back out changed my whole career path left with a physical disability an intellectual.

 

Nadine Vogel: How old were you then?

 

Yvette Pegues: 30.

 

Nadine Vogel: And again, it impacted what? I’m sorry.

 

Yvette Pegues: So, I left with a physical disability, I was a full-time wheelchair user a spinal cord injury and cognitive and intellectual disability.

 

Nadine Vogel: Talk about change. In a nanosecond. Okay, Norma and I were talking about another episode how disability is a private club that anyone can join at any time.

 

Yvette Pegues: Absolutely and that's the conversation I have with most people who, much like myself, was innocently ignorant before being put in a position where disability was right in your face.

 

Norma: Absolutely. It happened to me when you know I had my daughter, and then it happened again in my late 40s when I was diagnosed with epilepsy, so I learned on both fronts.

 

Nadine Vogel: Absolutely so aside from the obvious how life changed in that nanosecond tell us about changes that we might not realize that took place for you.

 

Yvette Pegues: Sure, well the situational leadership presented itself, whereby I went from catatonic comatose nonverbal to you know what I’m going to get up and I’m going to live for  my kids. And that was the pivot that I had to make at that point and that pivot allowed me to get up and be a role model to my then young boys. Who at the time we're getting bullied because mommy rolled around and on wheels and everybody else's mom was on feet, so there was a little bit of bullying there and I had all these appliances to hold me up. And, as a result of that those two little amazing people wanted to tell the story themselves, they felt like they needed to tell the story about living in a home where disability moved in without their permission. They were Okay, so they themselves put a couple of paintings together and turned out to be a published book called my mommy had brain surgery and I’m okay.

 

Nadine Vogel: Wow that is amazing it.

 

Yvette Pegues: It blew my mind, and it gave me the courage to be okay, because they didn't really, they couldn't tell they said, my life is still great my mommy is still here, you know my Daddy is still Daddy. They in that moment saw it through the lens of children, which I needed so l I got up, I think, at the time, I had to tell myself up right because I didn't have the core strength and I never laid down for more than eight hours again.

 

Nadine Vogel: Wow, we should be interviewing them, I want to know more about that book.

 

Yvette Pegues: Pretty amazing.

 

Norma Stanley: Awesome young men yeah.

 

Yvette Pegues: Well, they use it now to help others. So, it's I think it's at the children's hospital in Atlanta it's at the Shepherd Center it's at a lot of rehabilitative areas and Amazon.

 

Nadine Vogel: Well, we definitely need to follow up and interview them, I think I think that's the I think it's an important story to tell.

 

Norma Stanley: Absolutely.

 

Nadine Vogel: So, my understanding is that, as you need this transformation, you took on lots of new experience’s new roles, want to share some of that with us.

 

Yvette Pegues: I will, I will, as long as none of my engineering friends are listening. I was approached with an opportunity to participate in a wheelchair pageants so going from an engineer to pageant titleholder was not the coolest thing for me growing up, I was given two choices you either pretty or you're smart and can't be both. And what that did, for me, is it helped me understand that it's more than the beauty on the outside, it's the beauty on the inside and changing the image of disability that it's not detrimental that you've been live forward after a life changing event, so I started out as Miss Georgia. And I was able to serve as the first woman of color to hold the national miss wheelchair USA title. And then, finally, the first person ever to hold the Miss wheelchair international title and what that did, for me, is it gave me this broad spectrum of individuals who had never heard of the pageant. I got to travel the country in the world, and I got to be pretty and smart.

 

Nadine Vogel: Yeah, my hope is, and I haven't said this to many people, but wouldn’t  be really cool if we didn't need two separate pageants, but it was you know just Miss America or miss.

 

Norma Stanley: Period. That’s right.

 

Nadine Vogel: And it doesn't matter if you walk in on two feet or you're rolling in or anything in between, you know that does that bother you Yvette at all, because it bothers me.

 

Yvette Pegues: I don't think that I knew enough about pageants to be bothered initially, but I will say that our talent at the time was our community service and the way that we serve individuals with disabilities and around us, whereby a typical pagent would require the bathing suit and a lot of singing and acrobatic talent, but we have had individuals within the miss wheelchair organization try out for the regional pagent and she did pretty well but.

 

Nadine Vogel: yeah, that’s how it should be so you know i'm a mom of two daughters i'm a special needs mom like like norma so you know I think this i'm like okay how do my girls become you. How do they grow up and become you, Norma you thinking that same thing?

 

Norma Stanley: Absolutely absolutely I mean Yvette it’s so inspiring to me the thing that i've seen her do you know skiing and I think you did some skydiving or something I don't know I can't keep up. You do golf. I mean, she has a way of finding opportunities to show. People how they can live fully while they are you know and whatever sport just about and and I think it's a beautiful thing and i'm excited because I would love to see her to do some of those things I don't know you know we just have to hang out with you a little bit more.

 

Nadine Vogel: So, Yvette how many sports do you play.

 

Yvette Pegues: I’m up to about 15 different adaptive sports.

 

Norma Stanley: wow.

 

Yvette Pegues: The first one, I did was ski hockey Ice Hockey with my kids and the way that happened was so amazing I was sick at the kids were going to an ice hockey birthday party.

Some strange guy came over to the passenger side and said, can I borrow your wife. Husband said excuse me. Popped me in my chair and low me onto the ice and he said will she fall and they said yes, she will but she's gonna get back up. i've been playing adaptive sports ever since i've been falling and i've been getting back up.

 

Norma Stanley: The one that you were skiing that was interesting how do they do that.

 

Yvette Pegues: So the snow skiing usually there's a six ski equipment anyone with mobility issues or lower paralysis would be sitting otherwise, but I still haven't used to upper mobility and it's it's not easy, but again I was able to do that at about 20 to 30,000 feet above sea level so was up pretty high.

 

Nadine Vogel: I can't do any of these things. I mean really I can’t, I've tried.

 

Yvette Pegues: Done tennis, basketball, gosh oh water ski gosh I can't even remember all of them jet ski a lot of really cool things in my relationship, allow me to crushed them so nascar's called me and said hey we have this new adapted vehicle we want you to try and. You know lots of really fun things and maybe it's my frontal cortex because i'm not as scared or afraid of things anymore so maybe some of that stuff went away with the brain injury.

 

Nadine Vogel: Well, fear definitely does get in the way of things, but i'll just tell you I took three months of golf lessons and at the end of the three months that the instructor said, you know what's your plan, I said I can't do this, and he said, thank God. So that gives you an idea.

 

Yvette Pegues: Golf is my favorite land sport and i've done some work with the PGA and we're definitely doing a lot here in Atlanta with adaptive sports and bringing individuals in and recognizing that golf is the most social sport out there I’ve met a lot of wonderful people on the golf course that I know I would have never otherwise cross paths with.

 

Nadine Vogel: Now, do you play golf or do these sports with other folks that are doing adaptive versions, or is it mixed

 

Yvette Pegues: it's about inclusion, you know it's not about just me having a day with people who look like me, which is not a bad thing, but for the most part 90% of the time, what I do is what everybody else is doing it just you know different equipment.

 

Nadine Vogel: Well, as sounds like it sounds like you know the things, you're doing are giving you platforms to do more. But on the other side, it sounds like you're getting platforms that are digging into the next level so it's a combination of the two, but I would love to just hear how one influences the other.

 

Yvette Pegues: Sure, so I really do believe adaptive sports is a form of advocacy and activism by physically doing it and doing it publicly and doing it boldly because I have gotten kicked out of some golf courses and I believe that's where the activism comes in and the advocacy comes in, by showing that individual and forcing them to let me in. If I pay my money, if I have my equipment that may have to let me in and a lot of times they don't expect anyone to show up so when they have equipment it's not even charged, they're working and so, if I go there enough. You know they'll be tired of my big mouth, but I believe that the way that they intersect number one is by showing up inviting others to always be kind and visible and to try new things with the expectation of success and meeting people along the way and inviting them into this movement of inclusion it's not just about diversity equity it's also about belonging so if you're doing the diversity equity and inclusion, you should naturally end up in a place where everyone feels like they belong. So that's the goal, not just one or the other but the trifecta leading into an individual feeling connected in some way.

 

Nadine Vogel: Right, well then, it sounds to me like when you talk about advocacy it equates to education, absolutely yes that's good it sounds like that's and that's the basis, because we have to educate people have biases, I think they know them they think they don't. They just don’t own them right. I think that education is really, really critical and I love what you said about you know they may have the equipment, but they don't expect anyone to come and use it.

 

Yvette Pegues: Exactly that's not inclusion that's preparing for the worst-case scenario.

 

Nadine Vogel: Absolutely, yes, we need diversity is about you know, inviting someone to your party inclusion is asking them to dance.

 

Yvette Pegues: That’s right.

 

Nadine Vogel: Better yet, ask them what their favorite song is.

 

Yvette Pegues: Yeah, that helps.

 

Nadine Vogel: Right absolutely so.

 

Norma Stanley: that's the thing when they have situations like that in the entertainment field in the hospitality areas and places like that a lot of these places. No, they don't have an opportunity to show how they are really including us, because in many times when we do go to those places, we find out that they're really not ready. For us, you know there's some restaurants here in Atlanta I’m a foodie I go to I’m not going to mess around so at least I used to before everything went crazy, but you know there's one that I used to like to go to my daughter is in a wheelchair and had to take it to the bathroom but the bathroom upstairs elevator. Well, how.

 

Nadine Vogel: Or their using the bathroom as a storage facility.

 

Yvette Pegues: Oh, my god.

 

Yvette Pegues: chairs, in the cubby on the way.

 

Nadine Vogel: Highchairs the others chair when you say some new look at you have four heads. Oh well, we are needing to go ahead and go to commercial break, so we come back, we Norma I are going to be talking again with Yvette Pegasus and just see the incredible life she's leading and in the ways that she is educating and advocating for people with disabilities, because, as we all know, disabled lives matter.

 

Nadine Vogel: Disability Matters 2021! It is  Springboard’s15th anniversary so we’re going to celebrate in a big way with all of our speakers our honorees and especially our keynote speakers David Renaud on Day 1 and Chris Downing on Day 2 these two are amazing gentleman one wheelchair who has just rocked the world of Hollywood and the entertainment industry as a writer and a producer of the good doctor among many other shows and then there’s Chris Downing who is such a successful architect but who also happens to be blind please join us www.consultspringboard.com and register today it will be a virtual conference once again  due to Covid but nonetheless you will enjoy learn and he will be inspired we can’t wait to see you there, bye-bye!

 

Voiceover: And now, back to our show.

 

Nadine Vogel: Now this is Nadine Vogel your host of disabled lives matter and we are being joined once again with my co-host Norma Stanley and our guest Yvette Pegasus so Norma why don't you take it away.

 

Norma Stanley: Well, you know we've been having such a great conversation with Yvette, but one of the things I was hoping, she would touch on is, as we are part of you know, this month is women's history month and I just wanted to see what she thought about women with disabilities and how some of us that are exceeding but not getting the recognition for the contributions that they're making what would you say to that, and how can we, you know help companies and people to understand that you know, these people are you, leaving behind amazing people that that can bring all kinds of value to you.

 

Yvette Pegues: It's a really good question, and thank you for asking, and I know you know this because of all of your marketing experience, but when I have to sit before corporate and have the conversation about access and everything that we need, and why we need it most of the answers that I give, of course, depending on the table are the stats you know people love numbers and we talked about the 6 million people in the country, who have disabilities, a one out of every four we talk about the $8 billion dollars’ worth of progress and financial support that can be added to your business like if this is a business where you serve people one in four have a disability, we have $8 billion to spend. And access is a huge return on investment, and I say that not just for people on the outside coming in, but because I have an engineering degree, I have that conversation specifically around development. There's a saying in our Community that I’m sure you're both very familiar with, but I'll say it for the podcast and this movement that you're creating. Nothing about us without us. You are creating something whether you're building a building or a program or an app you need to have someone on your team. In house or outhouse didn't come out right, but you know what I mean. The inside or the outside, to make sure that that individual is helping you to create and invite and retain individuals with disabilities, there's three of us on this call today, but if there was one more at least one of us would be disabled, if you look at that to illness accident and to aging, which we will all meet at some time either temporarily or permanently, you can see the breadth and the depth of what this Community means and how do we make that clear, well, we keep doing what we're doing. I think a long time ago I stopped trying to prove to others. And made myself my biggest advocate, so I can self-advocate and I’m the person that I compete with the most and if you do that publicly and if you do that humbly and if you do that. With this silence strength, I think you will be on this podcast you know you'll be invited to do things with other wonderful people who are doing wonderful things so for me to answer your question again is to connect. To create and to always bring Community and to what you do and I’ll say this, and I had to say this before I said I don't want to just hold the door open for the next person with a disability to come in behind me, I want to take it off the hinges so no one else has a fight as hard as I fought and have to you know push as hard as I push because that's our responsibility as the Community that we need to leave better than without.

 

Norma Stanley: Absolutely

 

Nadine Vogel: Do you think it's your different or harder for disabled women of color.

 

Yvette Pegues: Absolutely my intersections are on the fray right as a woman of color with a disability. The expectation is so low; I have to say I’m excited about that because you know that if I come in with a low expectation, I know I’m going to meet and beat your expectation of me so again, some people take it personally people have to be very careful with the language that they speak in those settings and be the example with that language, and also to break barriers and that That to me is as exciting as it is that.

 

Nadine Vogel: Absolutely, the fact that we have to do it right, I always say you know, have we not learned from history right, I mean oh my gosh Look how many things as a country we have gone through over the years. It doesn't seem like we learned from any of it, we just keep repeating it just with a different name.

 

Norma Stanley: Definition of insanity.

 

Yvette Pegues: You're absolutely right about that.

 

Nadine Vogel: I find that so frustrating, but it is what it is right. I’m almost afraid to ask this Yvette, but can you tell us what the day in the life is like for you like, what is it you are doing now, because you do so much, and I believe you only have the same 24 hours we do. Perhaps not perhaps you went out.

 

Yvette Pegues: I think I have less like you so um your invisible disability group is an organization that we started right to equip and empower and invite and include individuals with disabilities, so that organization itself takes a lot of time we have a small but mighty organization with interns and a lot of individuals with disabilities who helped to provide a navigation, so our product is our service to help individuals with disabilities get a 80% yes rate, which means a newly injured or diagnose individual will pick up the phone and get eight out of 10 yeses instead of the common two out of 10 yeses, why? because, because we can pop them into our little algorithm see where they live, what they need connect those two together so that they don't have the issue of your no more than a hear, yes, and that navigation keeps us pretty busy.

 

Nadine Vogel: And how do people find out about that organization.

 

Yvette Pegues: Well, I’m at your invisible disability.com I’m online, and you can Google me. Unfortunately, my kids google me often but the yvettepegues.com is information that I can use, I have been able to connect people in Africa to wheelchairs in America. That is the navigation power and cabin relationships that we also have in sometimes they can even say Yvette sent me and hopefully that'll break some barriers and get through some. Some great some gate threats and gatekeepers that's part of what I do, besides being a mom and besides being a wife, I am also working on my final degree my doctoral thesis is what I spend the next part of my day with so I’m actually writing my dissertation on individuals with disabilities who are creating access within the church and on mission trips because. No one wants to take someone with a disability, out of the country without liability and so I’m breaking down those barriers, because I’ve taken my kids to the Dominican Republic in my wheelchair, and our next trip is in Japan during the Summer Olympics.

 

Nadine Vogel: You know I went my older daughter wanted to go on a trip, it was a three-week trip to Israel. A few summers ago, and she was trying to join with an organization of religious organization that would go. And, in the end they helped her, but wow and she have to fight and advocate to get the support to get what she needed it oh my gosh it just shouldn't have been that difficult but it was.

 

Norma Stanley: That’s the reality and that's one of the things that I’m hoping that we can make. Some changes in regard to travel in general, because, like I said I’d love to take my daughter to everyone has enough to take a year, but I know there's some issues there with the cobbled streets in places like Italy, and you know, so you know. The Caribbean, I’m from the Caribbean, and the streets are so tiny you can barely get a wheelchair around those things so there's so much that needs to be changed, and I don't know these people are so many people willing to change them because you know they just. I don't know it's been sad because, generally, the people with disabilities, they just got put away, they didn't get a chance to live and do things like everybody else did. That all in the past.

 

Yvette Pegues: So much has changed and there's so many disability travel agencies happy to put you in touch with because they also do travel groups. They also do a lot of blogs, so that you can see for yourself that should not be the case, in fact I know everyone on this call feels like, hopefully, in the next 10 15 20 years we don't have to have this conversation you can look back and say well. Did they really exclude us.

 

Nadine Vogel: Right, you know I used to work with SAP the Society for accessible travel and hospitality and your organization others and I’m always amazed by the challenges around traveling and like you Norma, I always wanted my girls to travel with us and they have been too I can't tell you how many countries from China to Italy, I mean all over but, it always required very specific planning advanced planning and advanced planning for things that were going to go wrong, because you knew they would. Be prepared for that so in the in the few minutes we have left, I do have one question specifically, I would like to ask you if you don't mind Yvette, which is so my company's Springboard we work with corporations around the world. We work with them to mainstream people with disabilities, disability inclusion at every level candidate employee customer. You know what would your advice be if you're talking to a global corporate CEO or one of their executives around disability inclusion, from the perspective of someone who is smart successful and happens to have a disability.

 

Yvette Pegues: Great question, I personally think that we are all smart and exceptional we all have our superpowers and if anyone would take the time to look deeper or allow us to present it to them, they see it, and what I would tell corporate America is COVID, it would be a single word that makes our crazy looks normal because, for those of us who have been advocating for infrastructure change so that we can have a zoom call or work from home. And so many of the other things that we as individuals’ disabilities already deal with that the world is now dealing with isolation and having groceries deliver and having to wear a mask and having to connect online and remotely this is now how we live. The future is that I’ve been working with have talked about this for the last 10 years flattening what corporate looks like. Because if they want their business to continue, they need to recognize that this new generation of workers don't care what your title is they don't really care how much you pay them. They care that you're a company that cares that you're putting in as much as your taking out, and that you are inclusive, because there are so many changes going on in the world. And if you're not ready to accept and empower and support those changes in the workplace, I don't really want to work with you, I don't want to be associated with you and I want to be on the right side of history where inclusion is normal.

 

Nadine Vogel: Right, you know, when you say that my concern and I hope it's only my concern and it's not reality is that we don't find organizations, having short memories. When covid is finally passing and it will eventually and. The things go back in some ways to the way they were and they say oh good now can everyone back in the office no we can't have working from home like I just hope because, when we look at history, and we look at so many other issues societal issues, we find that people have short memories.

 

Norma Stanley: Absolutely and that's one of the things we have to really be aware of and prepare for the same way, they have short memories when it comes to black lives and what black people have contributed to society from the beginning of US history, and so we have to make sure is that it's going to take the people, continuing to advocate and activate change.

 

Yvette Pegues: I heard someone explained black lives matter like a husband saying to his life I love you and she response, of course, you love me you marry me. We have to hear it often you have to know that your life matters with everything that happens around you whether you're black or disabled or you have other needs civil rights needs that are not being recognized but Nadine, this is where we hold our companies accountable by not just raising their hands in solidarity but putting it in writing and changing policy I don't want favors I want policy and so as we put those policies in place and we push back. We know that, unless you change your policy because you said it out loud that accountability is in place there's never been a situation such as what removing where there's this global and racial pandemic and companies understand that if they don't change now, they won't have it tomorrow, so. Through that change and through those commitments, we can now hold them accountable, because we have it in writing on TV in their mission or vision and again this creates these footprints that we can go back and step into to make sure that they're headed in the right direction.

 

Nadine Vogel: And so, we can only hope with this disabled lives matter podcast that we add to that and we add to them owning this and committing to it, and not just the usual check the box from a compliance standpoint. But really being committed and realizing that people with disabilities are people first that's right please with families with experiences with skills and that, at the end of the day, disabled lives do matter and it matters to everyone, not just people with disabilities.

 

Yvette Pegues: And you know, because we are all one and I love what you're doing this podcast will be evergreen and we can play it back for those who forgot and ended up on the right side of the wrong side of history will put them back on the right side, so thank you, thank you for this media that you're creating this movement that you're supporting and the blessing of opportunity it's going to be on the podcast today.

 

Nadine Vogel: Yvette, thank you so much, this is amazing talking with you Norma, thank you for joining me on this journey as always. And this is Nadine Vogel closing out this episode of disabled lives matter, we look forward to seeing you on the radio I guess is what they used to say right next week bye-bye everybody.

 

Norma Stanley: bye-bye be blessed.

 

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