Disabled Lives Matter

S2-Ep21_Joe_Rhea

Season 02, Episode 21
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Joe Rhea

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel your one of your host for disabled lives matter we are more than a podcast we are a movement, and I am joined by my amazing co host norma stanley.

Norma: Hello everyone.

Nadine Vogel: hey hey. how are.

Norma: You i'm great great looking forward to today's show.

Nadine Vogel: I know well today's gonna be really cool because we are interviewing Joe Rhea.

Nadine Vogel: As Joe likes to say there are moments in our lives, when we look back and say that there was some defining moment, you know for for me it was when my first daughter was born with severe disabilities norma, I think, probably for you too right.

Norma: yes. yes.

Nadine Vogel: For Joe However, it was an age 14 and.

Nadine Vogel: Although life changed he never really looked back so Joe welcome to the show.

Joe Rhea: Thank you for having me it's an honor to be here i'm excited.

Nadine Vogel: Absolutely, so I left everybody kind of wondering age 14 well then, what the heck happened.

Joe Rhea: yeah.

Joe Rhea: I was.

Joe Rhea: Just like many boys in Olathe, Kansas a suburb or Kansas City, I played sports pretty much my whole life I loved all the sports, but unfortunately I also love football and on September 11, 1984.

Joe Rhea: I was playing football and I broke my neck and was paralyzed from the neck down. for a while.

Norma: Wow.

Nadine Vogel: So. September 11 has been an interesting date for many reasons for you. Right.

Joe Rhea: Yes, yes.

Nadine Vogel: Ooh, my gosh.

Nadine Vogel: Now. I know that you, you know you go and you present globally at conferences and things like that, and one of the things that that you say and make sure I say this correctly that you believe there are only two types of people in the world ones who fight and ones who don't.

Nadine Vogel: And you know what I I actually my so my older daughter has lots of disabilities her whole life but has been sick recently and I took that line I said so, which one, are you.

Nadine Vogel: Which one, are you so I stole that from you, I just want you to know.

Norma: Great line.

Nadine Vogel: Exactly. So if I recall correctly, after your accident, they were like yeah give it up babe, if you're not going to be walking you know running doing anything but you are one of those who fight so tell us a little bit about the story.

Joe Rhea: Sure. Well, and they came in basically two days later, and first thing they did was tell my folks exactly what happened to my neck that i'd broken My fourth and fifth vertebrae compress my fifth herniated my seventh.

Joe Rhea: I bruised and flattened my spinal cord, and that I needed to be prepared to use a wheelchair, the rest of my life.

Joe Rhea: And then they said, but the good news is is that your bones broke perfectly so we don't have to operate we're going to put you in a halo.

Joe Rhea: I had no idea what that meant until they started screwing it into my skull and I found out really quick.

Joe Rhea: You know, and I always tell people when I speak, that there was two sounds and I remember very distinctly that day my mother crying and my skull cracking.

Nadine Vogel:  oooh. oooh.

Joe Rhea: Oh, you you hear it, because they keep you awake and they just screw it right in, and you can see my scars yeah.

Nadine Vogel: Okay i'm hurting just hearing about.

Norma: Yes.

Joe Rhea: Here's The funny thing about that being a 14 year old boy they had to shave my head and I was not happy about them shaving my hair.

[Laughter.]

Nadine Vogel: That was worse than the screwing in itself.

Joe Rhea: Initially, it was. I was like, don't do that, and then I.

Joe Rhea: So yeah so I looked at my neurologist the doctor and great man, but he was a typical neurologist dry as. can be.

Norma: Yes. they are.

Joe Rhea: Nopersonality and I just looked at him when I said after done, I was kind of nauseous I said, am I going to be able to play football or baseball again not, only am I going to walk again I want to know if I was gonna play football or baseball.

Nadine Vogel: Right.

Joe Rhea: He looks right at me and he goes no he didn't say maybe said we'll see, he said no.

Nadine Vogel: yeah well there's an optimist for you.

Joe Rhea: Yeah, but it made me mad it just really ticked me off, and I just kind of made a promise right then and there that if I get an opportunity.

Joe Rhea: I was going to prove him wrong I was going to do whatever I could to make this man, eat his words and then basically seven days later, my left leg, kind of wiggled and that was the opportunity that I hoped for.

Joe Rhea: And then from there was a battle, it was a constant therapy fight rebuild going through the process so.

Nadine Vogel: Sure. but you know I don't understand and Norma I have these conversations why, when my older daughter was born, I remember, I called the N-I-C-U doctor the doctor Dr doom and gloom.

Nadine Vogel: Right, and you know and the neurologists right, I mean we've been through neurologists I like eat them for lunch, you know.

Nadine Vogel: Because they're just.

Nadine Vogel: I won't say they're awful people, but they come off as. awful people.

Norma: Very insensitive. very insensitive.

Nadine Vogel: Well, they mean well. they mean well.

Joe Rhea: They do.

Nadine Vogel: So you have obviously endured, I can only imagine but tremendous pain, emotional, physical going through all this so talk to us a little bit about that the physical and the emotional.

Joe Rhea: yeah that's a really good question oh.

Joe Rhea: physically the pain.

Joe Rhea: was really started coming back when I started getting my feeling I describe it as if you can remember growing pains in your body like in your legs just multiply that by 100 all over my body.

Norma: Wow.

Joe Rhea: It was really, really bad it was really painful and, unfortunately, it seemed like it always was the worst at night.

Joe Rhea: When I couldn't move my arms to hit the call button.

Joe Rhea: I couldn't yell out enough because it affected, my phrenic nerve to get the nurse to come in and, finally, I would cry myself to sleep and that's when they would come in and wake me up and say I have pills.

Nadine Vogel: [Laughter.] Why does that not surprise me.

Joe Rhea: Exactly. So the pain, you know as a 14 year old boy you just kind of deal with it, but uh emotionally is what was probably the hardest for me.

Joe Rhea: I was really heartbroken what happened to me and, unfortunately, you know my folks did the best that they can, but my mom married a real cowboy he's a cattleman roped.

Joe Rhea: did all that and his his whole mentality was we're not going to talk about it that's old news, you need to suck it up move on and get over it, and that was kind of how I lived at home for the next.

Joe Rhea: Five years, and so I just white knuckle balled with my emotions and really didn't even get help for about 10 years. emotionally.

Norma: I was going to ask you about that, with your parents and you know because that's part of I know I feel my daughter's pain is, it seems to me, and I was going to ask you how did your parents handle that so how'd your mom, kind of maneuver that whole thing between your dad and you.

Nadine Vogel: yeah that must have been hard for her.

Norma: That must have been challenging.

Joe Rhea: It was really hard for her.

Joe Rhea: Because I think she would have put me in therapy, but I think obviously she wanted to follow her husband's lead and you know.

Joe Rhea: here's the double edged sword of that mentality, it really helped me physically because they pushed me so hard.

Joe Rhea: But it destroyed me emotionally, at the same time, so I was getting better physically doing things, above and beyond that what they thought possible and internally, I was really dying inside I was so heartbroken it manifested as anger.

Joe Rhea: I was mad.

Joe Rhea: At everything and everyone.

Joe Rhea: And it really came out when I uh.

Joe Rhea: I made the tennis team, two years after my accident.

Nadine Vogel: Oh wow.

Joe Rhea: Even though I could barely hold the racket but I was able to do it, and I even won tem matches and lost two yeah I was pretty good.

Joe Rhea: On the JV.

Nadine Vogel: Oh my God, you're like Superman. [Laughter.]

Norma: Awesome.

Joe Rhea: I was a really good athlete but anytime I lost it wasn't because I lost it was because of the injury and I would break my rackets and throw my rackets embarrass myself, but I didn't know any different I didn't have somebody to explain, you know it's okay to be mad.

Nadine Vogel: Right you didn't have the coping skills.

Joe Rhea. Exactly.

Nadine Vogel: Yeah. So, so when you think about this, you know I mean obviously both both of those right the injury itself, and then the follow up obviously changes you as a person right and it changes your perspective on just about everything. 

Joe Rhea: Yes.

Nadine Vogel: So when how and when did kind of that that pivot happened for you.

Joe Rhea: Yeah. Uh I 24 I had moved to Vail, Colorado to be a ski bum and I thought moving out there would fix everything and it didn't I had a.

Joe Rhea: pretty much my rock bottom moment I was living with my roommate, who was a good friend of mine, for a long for many years, his mom had died of cancer The night before and he was going to go home to see her and.

Joe Rhea: He went to go pick up some groceries for us before he left and at that particular time, I guess, I was drinking vitamin D milk and he bought 2%.

Joe Rhea: I laid into him. I so angry and upset and pissed off that he would do that and how stupid, could he be and.

Joe Rhea: And then I went down my room and I cried my eyes out because I didn't want to be that person I wasn't this person not a mean person, and that was my breaking point so I said I called up and said I need help, I can't I can't do this anymore.

Nadine Vogel: And so.

Nadine Vogel: From that point forward what was that what was the process what you know, obviously there's physical recovery and there's emotional recovery right.

Nadine Vogel: So, what was the process and recovery for that piece different versus the physical.

Joe Rhea: Well, physically i'd already plateaued I pretty much had gotten what I was going to gain emotionally, it was then starting to see a therapist getting on an antidepressant.

Joe Rhea: learning how to cope, a little bit better with what I was dealing with in my anger and it really helped me a lot to get on an antidepressant at that particular time, I was.

Joe Rhea: Again I didn't know that it would help, but once I got on it, it was just amazing for me at the time.

Nadine Vogel: The world kind of opens up right.

Joe Rhea:  It did absolutely.

Norma: You know it's important that you recognized that there was something that you didn't want to hold on to that you need to talk to somebody and that.

Norma: You know process that through because so many people don't admit there's something going on, when they're always angry and something is not who they really they really are it over to do, and they don't know who to turn to.

Joe Rhea: Exactly.

Norma: it's a lot as a 24 year old to know that you needed help.

Nadine Vogel: Right.

Joe Rhea: Yeah it took a lot of courage for me to admit that.

Joe Rhea: And I you know I.

Joe Rhea: like to say that hey I just can't do this on my own anymore. So.

Nadine Vogel: Right, and how did that change your relationship if it did with with your mom with her husband.

Joe Rhea: Ah, probably not much because I was living in another state, so they didn't really get the benefit of seeing me but.

Nadine Vogel: Right.

Joe Rhea: You know my mom and I were close enough to where we talked a couple times a week but.

Nadine Vogel: Awe, that's good.

Joe Rhea: Yeah it was just from that perspective I mean I was, I think I understood more what she was going through.

Nadine Vogel: Um, hmm.

Joe Rhea: and how hard it was on her because you know, while I was the one physically going through, but I think she was hurt even more mentally than I did.

Nadine Vogel: Right right. Absolutely you know, one of the things that's interesting for me is you know you're an athlete like you said right, so you know you play golf you ski you play tennis you I mean every sport imaginable.

Nadine Vogel: Was it ever even an inkling for your thought that you would continue to play sports but do it as a para athlete you know, like a Paralympic sport versus mainstream.

Joe Rhea: yeah I actually went to the United States Olympic facility in Colorado and wanted to try to be a skier but basically they deemed that.

Joe Rhea: Only my right arm was disabled enough to compete, so that I would have to not use my right arm against able bodied athletes who everything else was like an amputee.

Joe Rhea: really strong everything part of their and I here I am they had a spinalcord injury so everything was still affected, I had quadriparesis.

Joe Rhea: A weakness in all four limbs, but that that was what they deemed so I knew I couldn't compete against in that in that field but yeah I thought. about it.

Nadine Vogel: yeah because I think that that's also kind of a defining moment right, how do I continue if folks aren't an athlete before they get injured, I think it's probably different like for me, you know I tried to be an athlete but i'm not.

Nadine Vogel: I wonder if, because you were an athlete before you had that strengthen you, you have you know I think you had so many of those physical you know mental qualities that you just had to pull out. Which is in a way.

Joe Rhea:  It defintely helped.

Joe Rhea: That definitely helped.

Joe Rhea: That I was, I was driven. motivated.

Joe Rhea: Competitive really competitive and just to kind of prove everybody wrong.

Nadine Vogel: yeah I love it I love people that try to.

Nadine Vogel: Prove everyone wrong and are successful not just try.

Nadine Vogel: Successful so i'm curious Have you ever gotten back at those Doc initial doctors and folks that said no never huh.

Joe Rhea: No that was so long ago, but it would have been funny to do that.

Nadine Vogel: Well, you know what I liked the reason I asked the question.

Nadine Vogel: Is because my own personal situation with my daughter, they said she'd never walk talk all these different things she spent three months in intensive care when she was born and I made sure that they not only got photos but they got to meet her.

Nadine Vogel: As a young adult who is you know walking talking applying to colleges doing all these things, and for me it was more about not hey look, you were wrong or hey Look how great she is but.

Nadine Vogel: I want you to change your perspective.

Norma: Absolutely.

Nadine Vogel: I want you to think differently and not be so doom and gloom yes, sometimes that is the outcome.

Nadine Vogel: But, can you imagine.

Nadine Vogel: If you really think like she for you, Joe where you have a completely different mental attitude right that you're going to make it, no matter what, if they could potentially embrace that.

Joe Rhea: Sure sure.

Norma: Well it's so important and the way they break it parents, I think it should really think a little differently about how they give them a little hope, I mean don't come, I mean you know mix reality, with the hope. In some way, in my opinion.

Nadine Vogel: Right cause otherwise they're like you know I find that it's like a self.

Nadine Vogel: fulfilling prophecy for them see I told you you would never walk.

Joe Rhea: You know I.

Joe Rhea: You know, I think that i've done a lot of thinking about this.

Joe Rhea: And they want to give you the worst case scenario to kind of cover their butts if you. know what I mean.

Joe Rhea: So if you don't get any any better than they say look I told you, but if you gain then they're like that's just you know lucky you you've got more than we thought.

Nadine Vogel: Yeah.

Joe Rhea: And yeah I was.

Nadine Vogel: There got to be a balance, I don't know.

Joe Rhea: I agree.

Norma: I agree there should be a balance of some kind, but.

Nadine Vogel: I think they need some special mental health training themselves.

Norma: I agree with you.  You know. for our children. You want to give them.

Norma: Some idea that you know that you have to work hard to get them to where they need to be the same time. Let them think.

Nadine Vogel: Right right.

Norma: That there is a possibility.

Nadine Vogel: Absolutely. Joe you were 14 I mean you were you were in that formative stage right.

Nadine Vogel: yeah especially a boy athlete oh my gosh um well, so we need to go to a very short commercial break, but when we come back, we will come back with Joe Rhea and have some more really cool stories we'll be right back everybody.

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

[COMMERCIAL]
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Voiceover:  And now back to our show.

Nadine Vogel: Hello everyone, this is nadine vogel and I am joined by norma stanley your co host of disabled lives matter hey norma.

Norma: Hey.

Nadine Vogel: This has been such a cool show talking with Joe Rhea.

Norma: Yeah.

Nadine Vogel: Joe you you're you just one amazing guy for a lot of different reasons, but especially because you have really made it your mission in life, to make a difference in other people's lives right.

Nadine Vogel: and

Joe Rhea: Yes.

Nadine Vogel: that's you know talk about paying it forward right, and I know that you do that, in a variety of ways, including you know speaking and so forth, so i'm wondering if you could share with our audience all the different ways, you do that.

Joe Rhea: Sure um well I started out just as a waiter server for many years, this doing through sharing my story someone suggested I get into public speaking.

Joe Rhea: And I really didn't know how to do that I got involved with the Foundation called Think First, which is a brain and spinal cord injury prevention foundation.

Joe Rhea: Speaking to kids K through 12 within about a month, they made me their lead speaker and I did that for about nine years where I spoke to about.

Joe Rhea: 150 times a year to kids in Kansas city K through 12 and then through that I developed a collegiate program for athletes and you took what I learned and called program Bars, Cars and Catastrophes, this is pre Uber and Lyft.

Nadine Vogel: {Laughter.} I love it. Was it bars, cars and catastrophes right? 

Joe Rhea: yeah 

Naidne Vogel: I love it.

Joe Rhea: yeah.

Joe Rhea: We have another. 16 to 25 year olds suffer brain and spinal cord injuries more than than any other age group, and they do most often in car crashes.

Joe Rhea: And then you factor in alcohol and then there's falls and diving and fighting all the thing the young people do so I just developed that Program.

Joe Rhea: And then through there I started getting into doing programs on mental health and overcoming adversity and.

Joe Rhea: i've done that i've looked into corporations and goal setting and peak performance and then during covid which kind of killed everything.

Joe Rhea: I was able to finish my book and publish my book called When Life Knocks the Hell Out of You, Beat the Odds, and so I was fortunate to get that done that only took me about 20 years to finish.

Nadine Vogel: Okay, so yeah just a little time so let's let's kind of dissect we haven't you have a little time so let's dissect each one so i'm going to start with the book and we'll work back.

Norma: Yeah.

Nadine Vogel: Let's start with the book so When Life Knocks the Hell Out of You. 

Joe Rhea: Beat the Odds

Nadine Vogel: Beat the Odds. So tell us just give us an idea, because I, I suspect, people are going to want to order this book and i'm going to have you tell everyone how to order the book so let's talk about the book sure.

Joe Rhea: Sure um.

Joe Rhea: Believe it or not, I started handwriting the book in 1998 to set because I had so many people say you should write a book, you should write a book and i'm like.

Joe Rhea: i'm 28 years old, I mean or how how much of a story do I have, but apparently they thought I had a good story, so I started writing what i'd gone through and.

Joe Rhea: It sits there for a while, then you put it on you know, a word processor, and then it's not a computer and then the right anyway.

Joe Rhea: Finally, I met somebody That was a publisher here in Kansas city and she said, you know send me a chapter, you know, everybody thinks they have a book and.

Joe Rhea: I was like Okay, I sent her, the whole thing anyways she gets back she goes, this is really, really good and i'm really shocked I wasn't expecting much, and so she was able to help me get it published but it's really the.

Joe Rhea: The journey of my emotional physical recovery from 14 through the end of college to Vail and ultimately discovering what was my really the purpose for.

Joe Rhea: Why, I stay alive and what I wanted to do when you know, since I couldn't be a professional athlete or achieve those dreams and goals, which are really important to me.

Joe Rhea: What was the reason and, ultimately, it really was I always knew that I could be a father and that the last chapter of the book is called Molly it's about my daughter.

Joe Rhea: And the day she was born I knew that it was no no longer about me it was about her, and it was just the best thing ever.

Nadine Vogel: that's that's really fabulous so before we go into my other questions, how can folks get the book.

Joe Rhea: Sure it's currently on Amazon, you know just plug in the title When Life Knocks the Hell Out of You and it'll pull right up there's the book format, you can do a kindle unfortunately it's not in.

Joe Rhea: audio yet that's my next goal.

Joe Rhea: You go to my website Joe Rhea, excuse me, joerhea.com.

Nadine Vogel: Okay.

Joe Rhea: You can order it through that as well too.

Nadine Vogel: Excellent Okay, because I know our listeners are going to want to immediately want to do that so let's work backwards, then i'm going to start with Think First so tell us a little bit about Think First because it sounds really cool for kids.

Joe Rhea: Sure, it is the national program it's a nonprofit it's I think it's probably in almost all 50 states it's like I said it's a national brain and spinal cord injury prevention program used to be called Heads Up.

Joe Rhea: And then they changed it to Think First and they go to K through 12 and they really what they do is they have a lead speaker who comes in and set a tone.

Joe Rhea: Then they bring somebody who's in a wheelchair he's been paralyzed somebody who has a brain injury they're called voices and injury prevention.

Joe Rhea: And they share their story about what they've gone through, because ultimately brain and spinal cord injuries are preventable on in most cases, from wearing a seatbelt or speeding drinking and driving making good choices thinking first about what you do.

Joe Rhea: Should I dive into this pool before I jump in.

Joe Rhea: You know check the deep end and.

Joe Rhea: You know, make sure it's the it's the deep end versus the shallow end or before I do or dive into a creek Maybe I should jump in feet first and make sure it's not two feet deep instead of 10 feet So these are things and I loved it I just after nine years and 150 times a year.

Joe Rhea: I just wanted to do something else.

Nadine Vogel: yeah, no, no, but I think it's great and so, for those of us, you know for the listeners out there, they have young children.

Nadine Vogel: Um.

Nadine Vogel: That are having these kinds of experiences that I just I wanted them to know about Think First absolutely so now let's go to bars cars and catastrophes I just I just love the name.

Norma: Great title.

Nadine Vogel: The name, you know when I when I hear that name I just I think of fraternity parties.

Joe Rhea: Exactly. that's kind of what I thought of you know, but ultimately, I really spoke mainly to college athletes.

Joe Rhea: They think they're invincible you know they're in shape, you know they're as strong as they can be they finally get the weekend off to go party and then they really.

Joe Rhea: You know party hard, then you find out a lot of them have are depressed so they drink and do other things.

Joe Rhea: So I just really wanted to give them some really good information and some ideas and share my personal story.

Joe Rhea: about what happened to me, and so that they can make good choices in their life and understand that, even though they think they're strong as they can be that they're still vulnerable.

Nadine Vogel: Yeah.

Joe Rhea: and to think about the their decisions, because often they can be catastrophic in nature and that decision doesn't just affect them does it, it affects their family everyone they love and if you become disabled it affects everyone in your in your path for the rest of your life.

Nadine Vogel: Right, they also could use that Think First.

Joe Rhea: Exactly. You know that was the tie in.

Nadine Vogel: yeah no absolutely.

Joe Rhea: I just wasn't able to call it Think First.

Nadine Vogel: Think second.

Joe Rhea: Exactly. Think again.

Nadine Vogel: Think again. Oh, I like that one think again there you go um so you know it's it's interesting, I think that you know mental health issues are the most stigmatized of all disability types in our society, and I find that.

Nadine Vogel: college students athletes, you know they even more so they are right and they're hiding out.

Nadine Vogel: Any thoughts or suggestions you know, to help these folks it's just they're at they're at these crucial stages in their lives, and they just need to be able to acknowledge what they're experiencing.

Nadine Vogel: And you know whether it's the College, the university the family, people are just pushing it down bury it.

Joe Rhea: yes.

Joe Rhea: yeah i'm sure I thought a lot about this I mean for, especially young boys first it's suppress it, you know suck it up, but even for girls nowadays I think we're afraid to admit that we need help.

Joe Rhea: And then we can't handle this on their own, that if we actually go and say hey I can't do this it's a sign of weakness but asking for help, really is a sign of strength, it takes a lot of courage to admit.

Joe Rhea: That you need help and it's okay to do that, I mean for me I wasn't getting any joy out of the things that I loved and that was a telltale sign.

Joe Rhea: I was angry all the time was another sign that I didn't know this at the time I didn't know that my anger was a mask for depression.

Joe Rhea: And so I had to learn these things, and so really I speak about these things to students and college athletes and.

Joe Rhea: And I get them to think about if they're in the audience and they're feeling that they're having these thoughts, you know they know if they're struggling.

Joe Rhea: That it's okay to go to your coach or and say hey you know I think I need to talk to somebody because, believe me when I say this.

Joe Rhea: The first time I saw purpose and she said to me it's okay to feel the way you feel.

Joe Rhea: I lost it I literally started bawling because I hadn't heard that it was like a huge weight was lifted off my shoulders, that it was okay to be pissed off at the world about what happened to me.

Joe Rhea: But with that said what she made me realize and i'm glad she did it's not okay to allow those emotions to run your life and they were running my life, and they were making my life very difficult and unsatisfying, and so I was glad I went and asked for help.

Nadine Vogel: So how do you how do you how do you do that, how do you, what do you have to do to those emotions don't run your life.

Joe Rhea: well.

Joe Rhea: Its first acknowledging them acknowledging that they are, and I mean we have to be brave enough to look at ourselves and say.

Joe Rhea: Am I doing the things that I love I'm I getting up and going to you know out with my friends, do I enjoy these things, am I staying home all the time, do I want to sleep all the time.

Joe Rhea: These are telltale signs, but you it's taking the first step it's making decision that I need to go and ask somebody to help me through this process because what I learned is that if you're depressed and I mean clinically.

Joe Rhea: depressed it's not just you can get over it it's a chemical imbalance, it really is, I mean, and believe me when I say this depression can be more debilitating then paralysis.

Joe Rhea: Now, when i'm you know paralyzed if you're happy you'll get up and go do wheelchair basketball you pay attention you'll do these things, because you're happy, but if you're depressed you don't want to do anything and there's times, where I never wanted to get out of bed.

Nadine Vogel: Go ahead norma.

Norma: No.

Norma: I've been through that and didn't even realize it and.

Norma: never really wanted to dress really I want to sleep all the time I didn't realize that's what it was.

Norma: And I was in my you know.

Norma: Early 50s 40s time.

Norma: So yeah you know I finally was able to work my way through it. I didn't know I needed help or how to get help it just kind of went away, but once it went away I realized, there was a period of time, where I was not myself it wasn't me didn't I didn't know it.

Nadine Vogel: Right yeah.

Joe Rhea: Go ahead i'm sorry.

Nadine Vogel: No, no, please go ahead.

Joe Rhea: I was going to say in that aspect of feeling tired all the time that's another sign as well, especially for young people, you shouldn't feel tired all the time.

Nadine Vogel: Right.

Nadine Vogel: Right, but you.

Nadine Vogel: You made a point earlier about that it's a chemical imbalance.

Nadine Vogel: Yes, say, and you also made a point earlier about you know, taking antidepressants and I think that in and of itself is stigmatized because people don't understand it's a chemical imbalance.

Joe Rhea: Correct.

Nadine Vogel: Right right and that you sometimes need to treat a chemical imbalance with chemicals I mean I hate to say it, that.

Joe Rhea: I say it's like a vitamin for your brain.

Joe Rhea: In essence, it really is your brains depleted of serotonin you can't put that you can't build it up on your own if you're clinically depressed and again, you have to be diagnosed.

Joe Rhea: You know can't just make you have to go see a therapist and let them diagnose you, but if you are then suggesting i'll talk to them about an antidepressant may not be for you, but it might be and.

Joe Rhea: You know, trust me when I say when you start feeling better again you'll notice, I mean they said it would take three weeks for me to feel it, I felt it in four days.

Joe Rhea: I mean, I really woke up and I was like yeah I feel happy.

Nadine Vogel: And it wasn't it.

Joe Rhea: wasn't high like i'm doing. drugs.

Joe Rhea: I literally felt happy and I hadn't felt like that in a long time and my roommate was like, you're weird.

Nadine Vogel: Well, but I also think you know you may I hadn't heard this vocalized before, but you said that you know the mental health of depression can be more debilitating than the physical disability.

Joe Rhea: Absolutely, it can. yeah.

Nadine Vogel: People don't people don't realize it they don't accept it, and again it speaks to the stigma right because people to your point earlier, I think you get over it, you know, but they see someone in a wheelchair, and they won't say oh we'll just you know get up out of the Chair get.

Nadine Vogel: get over it right.

Nadine Vogel: But.

Nadine Vogel: For you, I mean oh my gosh you you've experienced both on many levels and, obviously, you are the epitome of the camp that these are the people that choose to fight it.

Nadine Vogel: And not fight.

Nadine Vogel: angry fight but fight for themselves, fight for, to have their life back. I guess i'll say 

Joe Rhea: Yes, yes.

Nadine Vogel: You know and and, I suspect, because of the fighter that you are had you not gotten the physical piece back, and you, you are using a wheelchair or crutches you still would be the guy you are today. Because you're affecting so many.

Joe Rhea:  I think so. well, I definitely would have been a fighter.

Joe Rhea: yeah I mean the you know there's for the longest time, one of the things that really was difficult for me, and this is my bane of my existence for a while, is.

Joe Rhea: To look at me now you would never know, I was once a quadriplegic both good and bad you know you don't know it, but you don't, then you don't know what what i've gone through to get to this point.

Joe Rhea: I see somebody in a wheelchair playing wheelchair tennis and you think man that is amazing look at that person.

Joe Rhea: You see me playing tennis i'm just some guy playing tennis right and that was hard for me, because I, you know, and then I would feel bad because I wanted recognition and that made me feel bad about myself that I even thought like that.

Joe Rhea: I saw guy win an ESPY his name is Kevin everett of the buffalo bills he broke his neck playing football was paralyzed was all over ESPN a year later, he was one Yes, he walked on stage.

Joe Rhea: Every professional athlete you could think of stood up and was crying and applauding, and here I was angry and jealous, and then I felt so bad that I was jealous of this man of this well deserved ESPY.

Joe Rhea: That made me feel bad about myself, because he deserved it, but I wanted that and these are the things that would go through my head and torment me and then here it was two years, where I won an honorary ESPY which was pretty cool.

Norma: Awesome.

Nadine Vogel: we're gonna get you a T shirt says, I once was.

Joe Rhea: I actually had a T shirt made which says former quadriplegic.

Nadine Vogel: See there you go.

Joe Rhea: Yeah, I did.  

Nadine Vogel:  There you go. 

Joe Rhea: I don't know if it's vanity or not. so.

Nadine Vogel: You know what it does it doesn't matter, because at the end of the day it was your experience.

Norma: Nice.

Nadine Vogel: It was your life experience and it's made you who you are today.

Joe Rhea: Absolutely.

Nadine Vogel: We can't deny that right we can't we and we shouldn't we shouldn't forget that I think that that's really important and it's probably a great note to end on since oh my gosh we are out of time, I never understand how 30 minutes flies the way it does.

Nadine Vogel: But um. Joe Thank you so very much. Again. 

Joe Rhea: Thank you for having me.

Nadine Vogel: Again, JoeRhea.com right to.

Joe Rhea: R-H-E-A. It's actually Joe Rhee-ah.

Nadine Vogel: Rhee-ah.

Nadine Vogel: I can't, wow.

Nadine Vogel: Rhee-ah, I'm sorry R-H-E-A.

Joe Rhea: Now, you're not the first one that's butchered it.

Nadine Vogel: But shame on me becuase I asked and I still butchered it.

Nadine Vogel: But this would be the website to get your book, maybe if there's someone's out there interested in booking you as a speaker so please Thank you so much for joining us today.

Nadine Vogel: norma as always.

Norma: Can't wait to get that book. Yeah great great show Thank you so much.

Joe Rhea: Thank you for having me.

Nadine Vogel: Thank you for joining us on another episode of disabled lives matter more than just a podcast we are a movement bye everybody.

Norma: be blessed.

Joe Rhea: bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

S2-Ep20_Elaine_Katz

Season 02, Episode 20
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Elaine Katz

 

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone and welcome to another amazing episode of disabled lives matter we are more than a podcast we are a movement and, of course, as always, Norma Stanley my amazing co host is joining me.

Nadine Vogel: Morning norma.

Norma: Good morning everybody. Great to see you.

Nadine Vogel: yeah so norma, we have an exciting show today, because we are going to be speaking with Elaine Katz. hey Elaine.

Elaine Katz: hey nice to be with you.

Nadine Vogel: i'm so glad you joined us so i've known elaine a really long time not they were old we just know each other a long time.

[Laughter.]

Nadine Vogel: She oversees Kessler Foundation's comprehensive grant making program and its communications department, so if that doesn't sound like a big enough job.

Nadine Vogel: Just to put it in perspective during her tenure at the at the foundation I think Elaine you've brought in you've had you've had like almost $50 million awarded. For the program.

Elaine Katz: Grants we've given out. yes.

Nadine Vogel: Oh my Gosh.

Norma: Yes, great.

Nadine Vogel: Right, I mean yeah so she's a force to be reckoned with so.

Nadine Vogel: let's get started. so Elain there are so many questions I have for you, oh my gosh um Well, first of all, just for those who are not familiar with Kessler, can you just give a little brief about what Kessler is and does.

Elaine Katz: Sure, so it's great to be with both of you.

Elaine Katz: And Kessler Foundation changes the lives of people with disabilities through medical rehabilitation research and funding our employment initiatives, our research works in the area of cognition and mobility for individuals with disabilities such a stroke and traumatic brain injury. muscular sclerosis.

Elaine Katz: And what we try to do is improve daily functioning and independence and we just by doing that we test new interventions and gather data which can improve the treatment, I head our Center for grant making as nadine mentioned.

Elaine Katz: we've awarded more than $50 million, or, as we say invested more than $50 million in organizations that.

Elaine Katz: work on, employment for people with disabilities we've done training grants we've done job creation, both in New Jersey, where we're based and nationally.

Elaine Katz: And we hope, by improving the participation rates of people with disabilities in competitive integrated employment and that's really key to us, and that by leveraging our dollars and human capital, we can really create some new ideas and models to move the needle forward.

Nadine Vogel: So I love that you said competitive.

Norma: Yes.

Nadine Vogel:  integrated employment because you know, not all employment is created equal let's put it that way.

Nadine Vogel: So, but before I because, again, I have some questions but let's just start with that so when you say competitive and integrate let's be really clear what that means versus just let's hire people with disabilities.

Elaine Katz: Well, what we're trying to look at and what we hope for is yes, you may get an entry job.

Elaine Katz: That pays minimum wage which that's the competitive part that you're in the competitive workforce, but that also it's a position where you can move that you're not stuck in that position for a very long time, even if you're starting at a fast food.

Elaine Katz: position then hopefully you can move either within that organization or you can move to another position.

Elaine Katz: Working with people without disabilities that's the integrated part side by side and have the same opportunities training onboarding just like everybody else.

Elaine Katz: And I think it's really important that you know people with disabilities have the choice to move into jobs that they're interested in, we often don't see people with disabilities being asked what would you like to do where would you like to work.

Nadine Vogel: Absolutely and I think that you know, a big impact to this to it well for everybody, but especially people with disabilities is the everlasting covid.

Nadine Vogel: It just won't go away and specifically what i'd love to focus on.

Nadine Vogel: Is long covid right so long haul covid is a real thing.

Nadine Vogel: I believe that some of the aspects of it are protected now under the A-D-A and its impact, so therefore it's impacting employment can you talk about that a little bit.

Elaine Katz: Sure, so you know, in the beginning of the pandemic, the American University Centers on Disability, which is a A-U-C-D had estimated at that time they're probably 105 million Americans.

Elaine Katz: Who were going to be affected by covid either with disabilities.

Elaine Katz: or older Americans adults and what actually also fill in that group that people don't realize it's all the caretakers you know all the caretakers and families.

Elaine Katz: That were in shared living situations where people with disabilities were also really at high risk.

Elaine Katz: And we saw that really the highest proportion of that group with the initial hospitalization especially individuals from diverse communities, and you know as that progressed.

Elaine Katz: Now we've been in the pandemic with vaccines and everything else but it's a lot longer I think than anybody ever predicted.

Elaine Katz: And we're seeing the emergence of long covid or long haul covid whatever you want to call it, and really it's an umbrella term for all kinds of physical and mental disabilities.

Elaine Katz: health issues that happen after four months, so you may recover and then you know, four months, six months eight months later it's still kind of lingering and you know, according to the CDC.

Elaine Katz: They looked at it last November and there's at that time there were like three to 5 million Americans so roughly one in five Americans over. eighteen.

Elaine Katz: were affected by this, so you know it's really a real issue and it's a real issue being brought to the disability community.

Elaine Katz: Because there are questions, as you mentioned nadine. we just celebrated the 32nd anniversary Americans with disabilities, which you know that legislation was created to protect people with disabilities and all kinds of situations, but it's not really clear right now.

Elaine Katz: If covid is covered, although you know recently the Department of Justice and also health and human services.

Elaine Katz: came out with some guidelines that long covid long haul covid is covered under the titles of the A-D-A so you know it's very, very confusing and it's confusing to employers it's confusing to people.

Elaine Katz: And it's real moment for you know disability advocates who now all of a sudden have this whole new group of people who really are people with disabilities, who never consider themselves having disabilities.

Nadine Vogel: Right. right.

Elaine Katz: Now, disability can happen to anybody at any time.

Nadine Vogel: Right and and The thing is, if I thought about that right is and norma, you and I talk all the time that disabilities can happen to anybody at any time, but now I think people are start trying to believe it.

Norma: I think so.  They have no choice but to believe it now.

Nadine Vogel: Right. they weren't believing us too much before so so as a result of covid some folks have been saying that you know there's there's tremendous opportunities for employment because of this remote work telecommuting.

Nadine Vogel: I'm mixed you know I thought and norma I would love to see what you think you know I always thought yes wow we've really come into our own now right but i'm finding that there are many organizations, I spoke with one yesterday.

Nadine Vogel: That said, they're looking to hire two people with disabilities one's part time one's full time they can't be remote, they have to be in the office and I was like really what, why are we back to that again.

Norma: Yeah.

Nadine Vogel: So Elaine I mean what are you seeing, with this.

Elaine Katz: Well, you know we did a survey of employees and people who are working with disabilities in.

Elaine Katz: 2015 and at that time you know we really asked a lot of questions and found people were just striving to work, so we know people with disabilities really want to work.

Elaine Katz: And they're overcoming barriers by training and all kinds of things education that they would go to work and in 2017 we did a supervisor study and there was.

Elaine Katz: You know nothing like remote work and at that time, we found part of that study that was difficult to ask for accommodations and get accommodations.

Norma: Yup.

Elaine Katz: But you know still people with disabilities want to work and employers wanted to hire them now, we have this whole beginning of the pandemic and everybody was remote so.

Elaine Katz: The idea that employers could make these accommodations for everybody, and we always knew they were doing standing desk and I have to computer screen, I mean.

Elaine Katz: they're always doing some sort of extra things for employees who asked, but now you know they actually help people set up.

Elaine Katz: computer systems at home and cameras and phone system, some of them gave money towards that so.

Elaine Katz: We knew remote work could be an equalizer for everybody, but now, as you mentioned we're seeing people go back to the office so in including my own office, where you know we have four days a week in, and we have one day a week we could work remotely but.

Elaine Katz: You know, so we saw when you work remotely that you know the transportation was minimized people who needed breaks during the day could easily take it.

Elaine Katz: But now that employers are asking everybody to come in, you know what's going to happen and let's be clear remote work wasn't for everybody, but.

Nadine Vogel: Right.

Elaine Katz: it's really mean for people with disabilities, because all of a sudden if you're working I mean forget the fact that want you in the office but.

Elaine Katz: If.

Elaine Katz: The opportunity to work remote and you're one day, and most of your team is in right or you know how are they going to evaluate your performance are you going to be seen as a less. person.

Elaine Katz: Working because you're not visible there's a great quote quote that came across by a from an Australian report that says.

Elaine Katz: presence without participation can be more isolating the no presence at all so.

Nadine Vogel: I agree.

Elaine Katz: You could be physically present without being included and that's what you know we're really you know are you going to get promoted are you going to get the right projects.

Elaine Katz: And it's you know now we know we could all after accommodations but now the question Now the question is going to be, do you have to be in the office and why are employers, insisting on it, which you know that's still to be determined, I think.

Norma: Isn't there a big issue with people finding gaps to begin with, so you would think that they would look towards the community of people with disabilities to try to fill some of those gaps in employment and Labor  shortages, that they are finding in so many different industries.

Elaine Katz: So that's that's kind of the question is that.

Elaine Katz: You know, employers want to find people they want they're looking at people who've been formally incarcerated returning citizens they're also looking at people with disabilities all kinds of population they never considered before.

Elaine Katz: But they don't often know where to find the people where to get the people.

Elaine Katz: We recently did a project with the SHRM Foundation, which is the philanthropic arm of the Society for Human Resource Managers.

Elaine Katz: And what that is is really creating a certification calling Employing Abilities at Work, and that was developed with global disability inclusion and we funded the project and what it enables employers to do is have a place to, and it's free you don't have to be a member of SHRM.

Elaine Katz: And you can go there and take this 10 hour course with seven modules and really learn how to onboard people with disabilities.

Elaine Katz: And it really helps employers and those in HR really get some training.

Elaine Katz: On a very individual basis, and also but, more importantly, what I think it's going to be good for is people in the field, so what we haven't talked about is.

Elaine Katz: Those nonprofit agencies who place people with disabilities oftentimes they don't know how to work with employers.

Elaine Katz: They don't always have the means to hire consultants, like nadine, to to work with them to work with employers, so this free platform will allow them to go in and really understand how a corporation on boards people hires people, so I hope they take advantage of this as well.

Nadine Vogel: Well that's it that's a great spot for us that we are going to move to commercial break, so, nobody leave everybody stay tuned we'll be right back with my co host Normal Stanley and I guess Elaine Katz, be right back.

 

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

[COMMERCIAL]
If you're familiar with Springboard Consulting Disability Matters Events.  You won't want to miss out on the 2022 Disability Matters Asia-Pacific Conference & Awards Live-Stream. It's happening November 9 & 10, and it's being hosted by Manulife.  So, don't miss out! Visit www.consultspringboard.com for more information. Again, that's www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: Hello everyone welcome back to disabled lives matter, this is Nadine Vogel your co host along with Norma Stanley.

Nadine Vogel: And today's guest is Elaine Katz from Kessler Foundation so Elaine you know it's interesting before before break what you were talking about with you know, providing training and giving guidance.

Nadine Vogel: What, we keep hearing from companies is flexibility it's all about flexibility we're completely flexible but we're really not.

Nadine Vogel: So, and I think you know, for what you said earlier and I hear it all the time, is that people with disabilities, you know.

Nadine Vogel: have always been hesitant to disclose because of you know, have they'll be treated they'd be the first to go, so now to your point before about if they're the ones asking to work from home and everybody else's in the office you know it just further can isolate them.

Nadine Vogel: So what is this definition, I may we have a new definition of flexibility, I don't know what do you think.

Elaine Katz: I think we do have a new flexibility of a new definition of flexibility, I also think that flexibility is really here to stay, I mean I just see that, on my own staff and people working at Kessler Foundation, with or without disabilities we're just named as one of the best places to work.

[Yay!]

Elaine Katz: and I'll find out our ranking in the fall, but what part of it, you know some of the comments we heard is that, yes, you know.

Elaine Katz: The place is clean and people were good during covid and all those kinds of nice management stuff but still some of the comments were yes we'd still like flexibility so.

Elaine Katz: I you know I think the mindset coming out of covid and you see the great resignation too I mean people, all of a sudden people are up ending their lives they're deciding to move to new positions, which is a whole nother discussion, we can have nothing at nonprofit agencies.

Nadine Vogel: Yes.

Elaine Katz: But I think people really want flexibility in their lives, and I think it's spilling over not only their personal lives but into their business lives, and I think it's still to be determined what's the definition right now we see an employer by employer.

Nadine Vogel: Right.

Elaine Katz: You know, and I also heard, there was an article recently and.

Elaine Katz: One of the national newspapers that talked about its regional so in some regions of the US.

Elaine Katz: or in smaller cities like Pittsburgh, people are all in our offices, but in like New York and L.A. people are still not in their offices, so it may really depend where you're living and what's the philosophy in the place you're living.

Nadine Vogel: yeah that is that I hadn't thought about it, regionally, have you norma I.

Norma: yeah that's true that's interesting.

Norma: I was in.

Norma: New York and it seemed to have more people coming back to the office than here in Georgia tell you the truth.

Nadine Vogel:  Really.

Norma: Interesting. yeah.

Nadine Vogel: So that that is that is interesting, but you know this this great resignation and norma you brought this up earlier as well.

Nadine Vogel: You know I think we're seeing it in certain industries, more than others and it's not that i'm not concerned about all industries, I am but i'd like to focus on what about.

Nadine Vogel: Elaine, are we seeing this on the nonprofit side that the agencies that are serving directly serving the disability community, my concern is, I feel like we're starting to see less staff in those places, and that is a concern.

Norma: Very much so.

Elaine Katz: yeah I mean we talked about in the beginning, that they were the the direct service professionals those individuals who really have expansive work working. mainly.

Elaine Katz: With individuals with developmental disabilities can work often times 24/7 in an individual home, in a group home.

Elaine Katz: You know around the clock care they're providing and socialization they're driving people to appointments oftentimes they're working developing.

Elaine Katz: skill building so those individuals are actually more during covid a lot of them left during covid or a lot of them, you know, took a break from work and then came back, but that industry had been in a crisis before covid.

Nadine Vogel: Got it.

Elaine Katz: We saw low wages, very little training high expectations high hands on and they were trusted I mean, these are the trusted people who are working with loved ones family members.

Elaine Katz: And they really have a good deal responsibility, so you know, in the great resignation direct service professionals really you know we're leaving a lot.

Elaine Katz: mcdonald's we're paying higher wages or some other fast food chains Lowes you know all the home buildings, you know retail is just much higher fast food was much higher and people were leaving.

Elaine Katz: And these agencies when direct service provider has a service and they're connected to a nonprofit agency that agency is require getting a reimbursement from the state usually for.

Nadine Vogel: Right.

Elaine Katz: Some service delivery those rates have not increased so with inflation, the cost of running a nonprofit organization which we often don't think about the cost individually of direct service providers living with inflation.

Elaine Katz: You know, there was there were a lot of people leaving I know in New Jersey we're seeing a lot of rotating staff.

Elaine Katz: So people in other positions other vocational vocational supervisors job developers they're kind of moving to another agency, also in this time because of increased opportunities so some of the smaller agencies are losing staff to bigger service agencies.

Nadine Vogel: Do you think we're going to be able, do you think we're going to see like a consolidation, where you just you know those little nonprofits just aren't going to be able to survive and it's going to roll up to the bigger ones.

Elaine Katz: I think that happened during covid and there was always some reports of agencies closing and consolidating and with inflation everything else, I think, so I mean what covid. 

Elaine Katz: You know, at least I know New Jersey and somewhat nationwide what covid really pointed out to is the nonprofit agencies serving people with disabilities.

Elaine Katz: Especially on the employment side we're not prepared to do remote services and we had provided a lot of emergency grant funding during the first year of covid and we bought a lot of computers, you would think we were buying computers for clients no we're buying equipment for staff.

Elaine Katz: The staff did not have the right kind of a computer or a camera to do a remote service delivery, you know a lot of client a lot of people with disabilities now have phones.

Elaine Katz: But you know it's hard to do a service delivery or teach something if you yourself are using the phone as well.

Nadine Vogel: Right, well, we found, I can tell you that you know at Springboard we got a lot of calls from parents working at our clients companies who said, who have children with disabilities.

Nadine Vogel: And during covid, you know the children weren't getting their physical therapy their speech therapy occupational therapy and they were trying to get the therapist to do it, you know via zoom and you know, especially with a child, with a disability, if you're not touching them, you know.

Norma: Yes. It is not the same.

Nadine Vogel: It was very, very difficult and you know my older daughter, who has disabilities was in the hospital for actually a few months, and just the nursing shortage.

Nadine Vogel: And what they were able to do, and you know it used to be they didn't like, especially if it's an adult child for the parent to like stay in the hospital room.

Nadine Vogel: They were like oh no please you know stay forever because we took some of the burden off what they had to do and it's just a little scary actually it's very scary especially in a hospital environment.

Elaine Katz: Well that's true, and then you know we talked earlier about long covid so right, you have all of these people entering a disability service delivery system that weren't there before and with staffing shortages and increasing costs and access.

Elaine Katz: You know it's hard for people to get services and then for people who already are there feel like somebody else's crowding them out in.

Elaine Katz: Some aspect, because now everybody's competing for limited services where so it's it's really going to be challenges for our health care and service delivery system, as we move forward.

Nadine Vogel: Yeah.

Nadine Vogel: It is, I want to switch gears a little bit while we still have some time to talk about your reports you put out these amazing research reports, the national trends and disability employment and i'm wondering if you could give us the latest and greatest.

Nadine Vogel: For what's what you're seeing.

Elaine Katz: Right, so our.

Elaine Katz: nTide report, which we call that for short.

Elaine Katz: it's really a joint report that's produced by Kessler Foundation and the University of New Hampshire and it comes out the first Friday of the month, which is.

Elaine Katz: Jobs Friday and it looks at numbers from the Bureau of Labor statistics in Washington.

Elaine Katz: But they're not identical to them, but it takes their statistics and merges male and female, and looks at how it affects people with disabilities and without disabilities, if you really want the latest and greatest and you just tuned in for tomorrow, because tomorrow.

Elaine Katz: I don't know when this is airing but every first Friday of the month is jobs right.

Elaine Katz: So you know, in June of this year in our report, we saw that employment really increased slightly.

Elaine Katz: From May to June for people with disabilities, but it really has been reaching an all time high you know we talked about the great reset.

Elaine Katz: resignation but during covid and continuing we have seen increased Labor participation rates of people with disabilities, why because oftentimes they were in essential jobs.

Elaine Katz: They were cashiers they were working in supermarkets and working in fast food they were delivery, so they stayed working oftentimes.

Elaine Katz: You know, over the past couple of years and, in fact, their participation rate now is almost where it was pre covid it actually it is where it was pre covid compared to when you look year over a year, with people without disabilities.

Nadine Vogel: okay well that's that's promising.

Norma: Wow.

Elaine Katz: Yes. It's very promising.

Norma. And moving in the right direction.

Nadine Vogel: in the right direction and and and are there, certain industries certain job types like are we seeing any trends there.

Elaine Katz: You know, we don't look at that type of data.

Elaine Katz: So I really can't answer that question but.

Elaine Katz: What we do think is that part of the high participation is also because of inflation.

Elaine Katz: We suspect, because you know it's encouraging everybody in a family who can work can work, whether you can work part time or full time you know anything contributed to income will help when you know you have high inflation.

Nadine Vogel: yeah absolutely and what about we had talked to a couple years ago about you know people with disabilities in college.

Nadine Vogel: And i'm wondering if you feel that covid has had an impact on that at all.

Elaine Katz: You know I think with remote schooling that individuals with disabilities who might not have considered higher education are.

Elaine Katz: Looking at it, we really haven't done much work in that, but you know before covid we did a survey and it did show that.

Elaine Katz: young adults with disabilities who are going through both a two year school and a four year school were taking advantages of all the opportunities.

Elaine Katz: Just like students without disabilities, the only real difference is they weren't focusing on the tech fields like science math.

Elaine Katz: What they call the STEM fields and that could be a real problem, as the job growth in the U-S, as we see it, it is, is becoming highly technical.

Elaine Katz: You really can't almost do any job, including you know punching in your timeclock that doesn't use a computer.

Elaine Katz: So it's really important to get those types of skills we're coming out with a new survey in the fall that's really step up to our supervisor survey we do it in 2017.

Elaine Katz: we're looking at the data, right now, but what that survey did was trying to compare how supervisor looked at hiring people with disabilities pre covid.

Norma: Wow.

Elaine Katz: To what happened duringcovid so that gets to what we talked about earlier is the accommodation questions are they onboarding more people are they finding more people what's happening in the workplace, so we're really excited hopefully that will come out in October.

Elaine Katz: Which is Disability Employment Awareness Month.

Nadine Vogel: yeah.

Nadine Vogel: One of the things that you bring up about you know the technology, I had a conversation goes back a few months ago with an occupational therapist she works with adults with disabilities.

Nadine Vogel: And one of the conversations we were having was how do, how do we get the O-Ts, the P-Ts, the speech therapists.

Nadine Vogel: When they start working with the children, the young children to incorporate technology more into the therapies.

Nadine Vogel: So that at a very young age, these children are getting more comfortable with technology, you know and and almost keeping up with their non disabled peers if that's possible.

Nadine Vogel: So I don't know if that's like a thing or not I mean she and I were just having a conversation Elaine your thoughts on that one.

Elaine Katz: I know they are using some technology, as you mentioned, I have a friend who's a speech pathologist and during covert she did have a home setup and she was working with.

Elaine Katz: You know the client she had who are children who are on computers and using computers and part of what she was doing was teaching some you know usage of computers so.

Elaine Katz: I do think some of the bigger hospital systems, I know we've done our research side have used some robotics and you know computer type things as part of therapy, but that really goes to.

Elaine Katz: You know, teaching I there is actually computer training for girls young girls there are you know it's more computer clubs and getting.

Nadine Vogel: Right.

Elaine Katz: young children with disabilities mainstreamed and we're talking about integrated into some of the boys-and-girls clubs and other places where they do have some training and teach courses after school or on the weekends in technology.

Nadine Vogel: I think it comes down to you know we've been talking about the workplace right and accommodations I think it comes down to these these after school programs that you're talking about and clubs.

Nadine Vogel: getting them to understand accommodations of the students, so we can get them, you know it's just like we found in colleges right students with disabilities don't aren't exposed as much as their non disabled peers to internships.

Nadine Vogel: Right so again it's, we have to push the needle but start it I guess at a younger age, I am hating to say this, but we are out of time I that that half hour just kind of flew.

Nadine Vogel: So Elaine any any last words of wisdom you.

Nadine Vogel: You want to leave our listeners with.

Elaine Katz: I think it's important that we, when we talk about competitive integrated employment, that we do focus on that and try to provide as many opportunities of that.

Elaine Katz: But when we're talking about integrated or inclusive, I think the idea of including people with disabilities in all aspects of the Community, besides employment to your point about socialization and clubs in government that's also very important.

Nadine Vogel: Okay, well, thank you so much for joining.

Nadine Vogel: us today.

Norma: Yes. Thank you so much.

Nadine Vogel: If someone wants to get in touch with you, or with Kessler, how should they go about doing that.

Elaine Katz: They can just email me at E-K-A-T-Z ekatz@kesslerfoundation.org.

Nadine Vogel: Great well, thank you. 

Nadine Vogel: norma. Thank you.

Norma: Thank you so much.

Norma: Another great session

Norma: Another great one. yes.

Nadine Vogel: Absolutely. And to our listeners, thank you for joining us on another episode of disabled lives matter we are more than a podcast we are a movement see you next time everybody bye bye.

Norma: Be blessed.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

S2-Ep19_Sheri_Byrne_Haber

Season 02, Episode 19
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Sheri Byrne-Haber

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello and welcome to the podcast disabled lives matter i'm Nadine Vogel one of your hosts I am joined by my fabulous co host Norma Stanley.

Norma: Hello everyone.

Nadine Vogel: And we want everyone to remember that this is more than a podcast, this is a movement and I absolutely think that you will agree, after hearing today's guest Sherry Byrne that you are going to agree with us so sherry, welcome to the show.

Sheri Byrne-Haber (she/her): Thank you, glad to be part of the movement.

Nadine Vogel: Absolutely absolutely and you know you have done so much, I think you have helped create the movement in many ways, so maybe we could start just tell our audience a little bit about your background because it's I think it's fabulous.

Sheri Byrne-Haber (she/her): Sure, so i've been in the field of digital accessibility for about the last 12 years before that I was an advocate for the Deaf.

Sheri Byrne-Haber (she/her): kind of an eclectic educational background I started off in tech with a degree in computer science.

Sheri Byrne-Haber (she/her): And then I became a lawyer, thinking that I was going to do, intellectual property and then I ended up going into accessibility, because of my daughter losing her hearing, so I do have a congenital mobility problem I use a wheelchair for getting around longer distances.

Sheri Byrne-Haber (she/her): But yeah i've been you know living eating sleeping and breathing the disability movement literally since I was born.

Nadine Vogel: Literally exactly so you know let's just get right into this People with disabilities are discriminated.

Nadine Vogel: They are discriminated in so many different ways and and what's so disheartening to me.

Nadine Vogel: You know my company springboard, this is what we do right we help companies mainstream people with disabilities in all aspects so that they're not discriminated against, but I feel like you know we barely move the needle.

Nadine Vogel: So, can you talk to us about at all the ways, you see, people with disabilities discriminated.

Sheri Byrne-Haber (she/her): Well, you know some of it is unconscious bias and some of it is a little bit more overt.

Sheri Byrne-Haber (she/her): You know if you don't buy accessible software you're inherently discriminating against your employees with disabilities, because they may not be able to use it.

Sheri Byrne-Haber (she/her): People with the hiring managers that are frequently not trained on how to interview people with who are neuro diverse.

Sheri Byrne-Haber (she/her): In particular, you know if you're looking for I contact a firm handshake that's not going to work for hiring people with disabilities that's automatically going to discriminate against them.

Sheri Byrne-Haber (she/her): You know, some of them are subtle discrimination i've seen is especially in the job of employment area, which is where i'm particularly active.

Sheri Byrne-Haber (she/her): Is an applicant tracking systems if they're looking for gaps in resumes and automatically rejecting those people that's automatically going to.

Sheri Byrne-Haber (she/her): impact, people with disabilities, because they're going to have more likely to have gaps they're more likely to be laid off they're more likely to have medical conditions that force them to leave their jobs and and deal with the conditions before they can go back to work.

Sheri Byrne-Haber (she/her): You know and and some of it is just you know, out of fear I can't tell you how many times i've been in the grocery store in my wheelchair, and you know the you know some child points to me out of curiosity and the mom says Oh, shhh and they run to the next style right, you know they you know.

Sheri Byrne-Haber (she/her): People are indoctrinated to a very early age, that disability is negative disability is bad and they are not taught that people with disabilities matter or the people with disabilities can thrive.

Norma: That's right.

Nadine Vogel: Absolutely I mean Norma and I both have adult daughters with disabilities and we see it all the time don't we norma.

Norma: Absolutely it's it's maddening.

Nadine Vogel: yeah and you know this issue you bring up the unconscious bias I, I have a just a personal thing that.

Nadine Vogel: I think biases I don't believe in unconscious bias, I think people consciously are bias, but.

Nadine Vogel: It may be because of that mom that told them just to shush right how they grew up how they the inexperi inexperiences they didn't have it doesn't mean they're trying to be mean it's just that they don't know like you said they.

Nadine Vogel: don't have the training and the understanding and you know it just you know it, for me, even I I went through this issue with elementary schools were when they started teach teaching foreign languages and teaching like Chinese and German and Italian why aren't you teaching sign language.

Nadine Vogel: Why why isn't that.

Sheri Byrne-Haber (she/her): it's taking a long time for sign language to get actually recognized as.

Sheri Byrne-Haber (she/her): A foreign language credit.

Norma: Absolutely.

Nadine Vogel:  Exactly.

Sheri Byrne-Haber (she/her): But it wasn't until some of the major schools like Princeton the Ivy league's like Princeton and Cornell started doing it that everybody else went oh well if they're doing it, we should do it too.

Nadine Vogel: Absolutely absolutely so I want to come back to your comment about the applicant tracking systems, so do you have a solution to that.

Sheri Byrne-Haber (she/her): um I don't know that I do you know the the software companies are you know, like.

Sheri Byrne-Haber (she/her): JESSICA rabbit they say well we're not bad it's just how we're used that makes us bad and you know you hear that from social media you hear that from from a lot of different companies, you know I would prefer that companies not offer options that allow people to discriminate. right.

Nadine Vogel: right right.

Sheri Byrne-Haber (she/her): That you know that's that's my way of thinking, you know short of that all you can do is education or you know, a big lawsuit.

{Laughter.}

Sheri Byrne-Haber (she/her): that's that's the one, nothing will teach a company faster.

Sheri Byrne-Haber (she/her): That what they're doing is wrong than having to shell out a bunch of money on legal fees and settlement agreements because it turns out what they did was wrong.

Norma: right.

Nadine Vogel: right.

Nadine Vogel: And then, and you know what's interesting to me that when I see that i'm always like Okay, so now, the other companies, especially at least within their industry they'll get it now I still don't see that.

Sheri Byrne-Haber (she/her): They will, or they won't most most litigation doesn't go to trial and most end up in confidential settlement agreements so unless it's the E-E-O-C or the Department of Justice suing I would say, probably only about I mean my best guess would be maybe one in 100.

Nadine Vogel: Ugh.

Sheri Byrne-Haber (she/her): lawsuits filed you ever hear about.

Norma: Wow.

Nadine Vogel: Norma this is not good.

Norma: not good at all, you know, I was in a situation not to long ago where.

Norma: Somebody was going to a restaurant a brand new restaurant and the way the seats were situated my daughter's wheelchair we could not maneuver to the table that it was a birthday party and I sharing with the manager, can you please you may need to provide me these things.

Norma: And its a manual chair, can you imagine if it was a power chair.

Norma: And I found out from some of the guests who were there, who I guess didn't know we were coming no you're supposed to call you're supposed to call the restaurant first. I said, no you're not.

Norma: We should be able to come into any.

Norma: restaurant, we want to.

Norma: yeah they actually thought that's what we should have done, and we were the one messing everybody's party up. Because.

Sheri Byrne-Haber (she/her): Oh well, let me tell you a story them so two days ago.

Sheri Byrne-Haber (she/her): So recently.

Sheri Byrne-Haber (she/her): I was flying back from Denver.

Sheri Byrne-Haber (she/her): I called the shuttle company they advertise on their website, they were A-D-A accessible, I called the shuttle company and they're like oh yeah we're gonna have that shuttle ready for you, when you get here.

Sheri Byrne-Haber (she/her): I got there you know, of course, they only had one shuttle right, not all the shuttles were A-D-A.

Sheri Byrne-Haber (she/her): accessible and it was at the airport and the guy decided to take lunch.

Norma: Oh wow.

Sheri Byrne-Haber (she/her): Right so um you know that you know, this is the reason why and and, yes, I have filed a complaint with the Department of Justice and with the company and flamed them on Twitter and everything else.

Sheri Byrne-Haber (she/her): But you know, sometimes you feel like you're you're spending your entire life doing that.

Nadine Vogel: Don't that.

Sheri Byrne-Haber (she/her): because nothing was made for us and people rarely think to include us.

Norma: Absolutely.

Nadine Vogel: And it's true and I think you know, because you were talking earlier about employment issues, even if we think of the interview process I would love to hear your comments and your thoughts.

Nadine Vogel: On just the discriminatory practices that set people with disabilities up for failure, right from the interview.

Sheri Byrne-Haber (she/her): Well, you know, first of all interviews, I think I can only speak from tech because that's where and a little bit from previously being a lawyer interviews tend to be really long blocks of.

Sheri Byrne-Haber (she/her): Contiguous time you know, sometimes i've heard of blocks of interviews as much as six hours that can be very difficult, if you have a fatigue related disability or if your neuro diverse.

Sheri Byrne-Haber (she/her): You know the biggest problem I see is that.

Sheri Byrne-Haber (she/her): People who are doing the interviewing can't put themselves in the position of the person that they're interviewing so they don't understand.

Sheri Byrne-Haber (she/her): What a compen compensatory skills or things that people have developed like you know I might be interviewing.

Sheri Byrne-Haber (she/her): The the place, I happen to work is a 2.2 miles square campus right so somebody might look at me and my wheelchair and think well I don't know how she's going to get around here.

Nadine Vogel: right.

Sheri Byrne-Haber (she/her): um so you know there's there's.

Sheri Byrne-Haber (she/her): there's discrimination what wherever you go there's discrimination in how the interviews are set up, you have to request captioning frequently it's not automatically turned on.

Sheri Byrne-Haber (she/her): The.

Sheri Byrne-Haber (she/her): You know people who are.

Sheri Byrne-Haber (she/her): Do or neuro diverse or who have disabilities frequently you know have competence issues from the way that they've been treated in the past, so it's very difficult to come into this.

Sheri Byrne-Haber (she/her): You know projecting confidence and so when when people are ranking the candidates, at the end of the day, unless it's a job, where they're specifically looking for somebody with a disability, you know frequently we're we're ranked.

Sheri Byrne-Haber (she/her): Lower in the priority list, yet the other issue is many people hide disabilities, yes 70% of disabilities are invisible.

Sheri Byrne-Haber (she/her): And there's a great Harvard Business Review study about how that impacts.

Sheri Byrne-Haber (she/her): Employment in that the employees are much more anxious and much less engaged because they're worried about being outed.

Norma: Yes.

Sheri Byrne-Haber (she/her): and i'm making air quotes around that word.

Sheri Byrne-Haber (she/her): about having a disability, and then you get into the catch 22 where because you haven't disclosed you can't get accommodations so you can actually get fired.

Sheri Byrne-Haber (she/her): For the the performance issues associated with your disabilities, in order to get protected, you have to.

Sheri Byrne-Haber (she/her): make it known and ask for accommodations and that's a very difficult step for some people to take and it's a very difficult step.

Sheri Byrne-Haber (she/her): For people who grew up outside of countries that have protections for people with disabilities, I work with a lot of people from India, for example, they have a very different concept of disability in India.

Nadine Vogel: Yes.

Sheri Byrne-Haber (she/her): Then we do in the United States.

Nadine Vogel: Absolutely. I've I've we've done a lot of work in India and you right it's very I mean from the language to the accommodation expectation everything.

Sheri Byrne-Haber (she/her): Yeah.

Nadine Vogel: very, very different so for those listeners that have yet to disclose to their employer and maybe because they don't even know what they can ask for what's possible.

Nadine Vogel: Right, because we have listeners in different countries, you know, do you have like I hate to say, like the top three or top five or things that you want to make sure folks know they can ask for.

Sheri Byrne-Haber (she/her): So accommodations typically break down into three categories there there's processes there's tools and there's facilities right so processes are things like.

Sheri Byrne-Haber (she/her): You work from home full time or you work six hours a day, instead of eight hours a day um or you get you know your time off from three to five every other Wednesday for some type of medical related appointment.

Sheri Byrne-Haber (she/her): tools are, for, if you have dyslexia, for example, you might want grammarly.

Sheri Byrne-Haber (she/her): grammarly is a great tool to help people who are writing documents make sure that everything is in the correct order and grammatically correct but it's about $100 and it's not I mean it's cheap for a company it's not necessarily cheap for an individual.

Sheri Byrne-Haber (she/her): So there's lots of tools, you can ask for screen readers or magnifier or anything having to do with with software related to disabilities and then finally there's facilities modification so. any facility

Sheri Byrne-Haber (she/her): that was built.

Sheri Byrne-Haber (she/her): Before the Americans with Disabilities Act, and so, as they are renovating buildings.

Sheri Byrne-Haber (she/her): they're adding in electronic door openers they and they added them to the buildings that I use the most frequently so that just you know it's not required under the A-D-A but I was really struggling and.

Sheri Byrne-Haber (she/her): And so they did add those to make it easier for me to get in and out of the building and get in and out of the restrooms.

Nadine Vogel: Right right well that that's perfect because I think people really sometimes just are not sure what they can ask for or they're uncomfortable because they don't see anyone else, having that disability right and having that accommodation.

Sheri Byrne-Haber (she/her): Right well accommodations are supposed to be confidential so.

Sheri Byrne-Haber (she/her): Unless.

Sheri Byrne-Haber (she/her): Somebody talks about it.

Sheri Byrne-Haber (she/her): you're not necessarily going to know what other people are doing.

Sheri Byrne-Haber (she/her): And then the other thing is you don't necessarily get what you asked for you, if you ask for a BMW solution, but it can be solved with a you know Prius you're going to get the Prius right.

Sheri Byrne-Haber (she/her): And, but because the point of an accommodation is is solving the problem it's not necessarily getting the most expensive thing available to solve the problem.

Nadine Vogel: Exactly.

Nadine Vogel: Perhaps, so we need to move to a commercial break, but when we come back Sheri I really want to get a little I hate to say controversial, but I really want to start talking about.

Nadine Vogel: Discrimination, as it relates to some of the more recent changes we've seen in our country, such as the undoing of Roe V Wade so for everyone stay tuned don't go anywhere, this is going to be an exciting discussion.

Nadine Vogel: Be right back.

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

[COMMERCIAL]
If you're familiar with Springboard Consulting Disability Matters Events.  You won't want to miss out on the 2022 Disability Matters Asia-Pacific Conference & Awards Live-Stream. It's happening November 9 & 10, and it's being hosted by Manulife.  So, don't miss out! Visit www.consultspringboard.com for more information. Again, that's www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

 

Nadine Vogel: Hello everyone and welcome back to this evenings episode of disabled lives matter we are more than a podcast we are movement, I am here today, as always with my co host Norma Stanley.

Norma: It's great to be here.

Nadine Vogel: Yeah. And today, we are talking with Sheri Byrne Haber and we've been having a fabulous conversation about you know just people with disabilities in the workplace.

Nadine Vogel: Some of the discriminated discriminatory practices that we see all kinds of accommodations folks plans for, but we want to change the topic a little bit.

Nadine Vogel: Um Sheri is the author of a popular medium blog called this This Week in Accessibility and in this blog she summarizes legal cases and issues facing people that implementing accessibility programs.

Nadine Vogel: One of the things and how Sheri, and I actually first engaged with with some of the latest legislative changes to Roe V Wade.

Nadine Vogel: And we know that this is a topic that people are very feel very strongly on both sides um today's conversation is going to be about the impact on women with disabilities so Sheri take it away because I just this just tears at me.

Sheri Byrne-Haber (she/her): Sure, so you have to start with the baseline that women with disabilities already experience discrimination and healthcare.

Sheri Byrne-Haber (she/her): women with disabilities are more likely to be in state funded insurance programs, which are just generally lower levels of quality.

Sheri Byrne-Haber (she/her): There is discrimination associated with weight, there is discrimination associated with you know, being a person of color who's a woman with a disability it's all intersectional it all adds up over time.

Sheri Byrne-Haber (she/her): But then, in particular with with with the Dobbs decision, which is the one that overturned Roe V Wade.

Sheri Byrne-Haber (she/her): You know there's a couple of really important statistics to understand for women with disabilities, you know, first of all women with disabilities are five times more likely to be sexually assaulted.

Norma: Yup.

Sheri Byrne-Haber (she/her): Then women without disabilities, especially women with intellectual issues.

Norma: Yes.

Nadine Vogel: Yes.

Sheri Byrne-Haber (she/her): mental health issues so that's a pretty significant concern.

Sheri Byrne-Haber (she/her): So they're more likely, you know to be pregnant, not through any desire of their's you know some women with disabilities have conditions that they don't want to pass on to their children, so they may have some autosomal dominant.

Sheri Byrne-Haber (she/her): Genetic condition, where the.

Sheri Byrne-Haber (she/her): Child is 50/50 whether or not they're going to have the same medical condition that they do, and so that's a significant issue.

Sheri Byrne-Haber (she/her): For there but there's all kinds of other side effects as well, so you know we I hear a lot there's this woman on on linkedin that I follow I'm spacing out on her name.

Sheri Byrne-Haber (she/her): But every post that she has she says when a black women are four times more likely to die in childbirth, why aren't we doing anything about this well women with disabilities are 11 times more likely to die in childbirth, why aren't we doing something about that.

Nadine Vogel:  Oh, my gosh.

Sheri Byrne-Haber (she/her): and then again intersectional a woman of color with a disability is probably even higher than than the 11 times more likely.

Nadine Vogel: Oh my.

Norma: Absolutely.

Sheri Byrne-Haber (she/her): women with disabilities are more likely to be in poverty, and so they are not always able to take care of children, even if that was.

Sheri Byrne-Haber (she/her): Even if they didn't want to end the pregnancy and then you look at the there's all kinds of secondary side effects so there's discussion about how does the Dobbs decision impact.

Sheri Byrne-Haber (she/her): In vitro fertilization that's going to directly impact women with them infertility conditions which can be tied to disabilities.

Sheri Byrne-Haber (she/her): Women with rheumatoid arthritis are already reporting that they can't get their prescriptions refilled.

Sheri Byrne-Haber (she/her): One of the drugs that's most commonly used it's the cheapest drug out there, totally safe been on the market for like 30-40 years it's one of the drugs that they use to induce miscarriages.

Nadine Vogel: {gasps.}

Norma: Wow.

Sheri Byrne-Haber (she/her): and so pharmacists are refusing to refill it.

Nadine Vogel: Ugh.

Norma: Ugh.

Sheri Byrne-Haber (she/her): in the trigger states.

Norma: Domino effect.

Sheri Byrne-Haber (she/her): Some of them have had these prescriptions for years and years and years, and you know I can speak from personal experience when Covid started.

Sheri Byrne-Haber (she/her): Two of the drugs that I was on from my rheumatoid arthritis all got confiscated for Covid trials and I had to go off my rheumatoid arthritis drugs cold turkey, and I was miserable, it is not a good place to be.

Norma:  Wow. 

Nadine Vogel: That's that's. 

Norma: That's. staggering I mean, I know that my daughter who's 33 and you know sexual activity is not on her radar but just even getting a G-Y-N exam is challenging.

Sheri Byrne-Haber (she/her): Sure.

Norma: because she's in a wheelchair, and you know she's just not going to sit for that.

Sheri Byrne-Haber (she/her): The doctor's office don't have joists.

Norma: They don't.

Sheri Byrne-Haber (she/her): to transfer people they don't have tables that can hold more than 250 pounds, you know it's it's.

Sheri Byrne-Haber (she/her): You know, there are starting to be more regulations that are coming out from the government specifying that but then, yes, the same thing as a disabled bathroom right.

Sheri Byrne-Haber (she/her): You know, you can be compliant again making air quotes and have an accessible bathroom but if there's somebody in there with a stroller and i'm out here with a wheelchair trying not to have an accident that doesn't help me that much so, you know, having a single accessible room.

Sheri Byrne-Haber (she/her): Is that you know compliant, but not sufficient.

Nadine Vogel: Right, so if wow. what, if anything is being done or can be done behind the scenes, right now, relative to the Dobbs decision in helping folks and the government understand the implications here.

Sheri Byrne-Haber (she/her): You know it's a really good question, I know that some of the national disability organizations are starting you know fundraising campaigns and letter writing campaigns, I've talked to people.

Sheri Byrne-Haber (she/her): who have not been able to get their drugs refilled and pointed them to Mark Cuban's website which does sell methotrexate, which is the drugging question.

Sheri Byrne-Haber (she/her): and told them look get an out of state prescription get it filled here and then get it mailed to your House now will the state state government of South Carolina eventually pass laws, making even mailing of drugs.

Sheri Byrne-Haber (she/her): To their state illegal possibly what happens if you don't have the money to pay for the outside methotrexate and for the outside referral.

Sheri Byrne-Haber (she/her): So you know fundraising advocacy campaigns that's that's really where we're at right now, I mean the decision is only slightly over two weeks, and so.

Sheri Byrne-Haber (she/her): I think people are still not really understanding that this is more than about you know stopping people from having you know abortions when fetuses are viable, this is, this is about controlling women and controlling women through through all these.

Sheri Byrne-Haber (she/her): Side effects that I discussed.

Nadine Vogel: Right well, and you know shame on the big pharmas. I mean they should be willing to take a stand and say I mean don't they have any role in this.

Sheri Byrne-Haber (she/her): You know I hadn't thought about it from that perspective um a lot of the drugs in question have been around for a while and so they're generic.

Sheri Byrne-Haber (she/her): And and they're not big profit centers I know there's only one manufacturer of the injectable methotrexate because when they had a quality control problem.

Sheri Byrne-Haber (she/her): Due to a hurricane, all of a sudden, there was a shortage and they asked all the people who were on it, can you switch to the pill form, so that we can use this special injectable.

Sheri Byrne-Haber (she/her): For kids with leukemia where the injectable was the only thing that they could take they couldn't take the pills so that's a problem because.

Sheri Byrne-Haber (she/her): You know there's just not not a lot of money in generics, the money is in you know what they're advertising on TV.

Nadine Vogel: Right well you know what I mean so many things bother me.

Nadine Vogel: You know this whole issue you know let's talk let's back it up to Covid right, so when government was pushing you know the Covid vaccine right and people were saying well I don't want to take the vaccine my body my choice blah blah blah, how is this different.

Nadine Vogel: How is this different.

Sheri Byrne-Haber (she/her): I don't I can't I can't split that hair, you know I just don't understand the people who can.

Sheri Byrne-Haber (she/her): retain the cognitive.

Sheri Byrne-Haber (she/her): You know clash between those two positions.

Nadine Vogel: Right.

Sheri Byrne-Haber (she/her): Right, you know my body my choice with Covid vaccine and your body my choice.

Sheri Byrne-Haber (she/her): with pregnancy.

Nadine Vogel: Right it just. It makes no sense and and and obviously this they're not thinking women with disabilities, because they're not even thinking women in general, but to your point well, first of all, the statistic that you quoted women and with disabilities 11 times more likely to die in childbirth.

Nadine Vogel: I gasped at that.

Norma: yeah.

Nadine Vogel: I just got to that. you know I think of my older daughter, who you know talks about having a child some day she's 31 she has you know all these disabilities and i'm thinking oh my.

Nadine Vogel: gosh now is that because of the quality of the treatment of the level of care that they're getting.

Sheri Byrne-Haber (she/her): I don't think it's necessarily tied to that I think it's um you know, women are more likely to have autoimmune conditions, especially women of childbearing age.

Sheri Byrne-Haber (she/her): That is linked with blood clots, and so I think a lot of the you know I actually my deaf daughter's third grade teacher died.

Sheri Byrne-Haber (she/her): A couple of days after her third child was born from a blood clot that came from an autoimmune condition that she had so I suspect that I suspect, maybe I hope that it's it's not necessarily people deliberately discriminating against us it's more that um you know we we are higher risk.

Sheri Byrne-Haber (she/her): in general.

Sheri Byrne-Haber (she/her): You know I have type one diabetes it's very difficult to manage your diabetes when you're pregnant.

Nadine Vogel: Right right oh my gosh that is.

Nadine Vogel: And I also think this issue of you know, women with intellectual disabilities.

Nadine Vogel: Um the you know succumbing to rape and in all of these just awful issues right, much more so than someone who doesn't have an intellectual disability.

Nadine Vogel: You know that what was the situation just recently of the 10 year old that got raped, a 10 year old child and they wouldn't allow her to have an abortion she had to go across state line.

Norma: Yep.

Sheri Byrne-Haber (she/her): Or the there was a story, a few years back, about a woman.

Sheri Byrne-Haber (she/her): I want to say it was in Arizona, who was in a coma.

Norma: And yes, I was just thinking.

Norma: About that yeah.

Norma: yeah she was raped by one of the.

Norma: People who work there.

Norma: yeah she end up getting pregnant and giving birth, you know.

Sheri Byrne-Haber (she/her): With no prenatal care so you know that.

Sheri Byrne-Haber (she/her): You know.

Sheri Byrne-Haber (she/her): that's that's another thing you know people with disabilities, we don't like going to doctors, because we do it more than everybody else so.

Nadine Vogel: So so help us here Sheri, as you know, we only really have a couple minutes left for our listeners, who have disabilities for our listeners who don't have disabilities what what kind of guidance should we be giving people to help move the needle and change some of this.

Nadine Vogel: All of this.

Sheri Byrne-Haber (she/her): The Dobbs Dobbs did not make abortion illegal.

Sheri Byrne-Haber (she/her): Right Dobbs said it was up to the States to decide whether or not abortion was legal and then of course we had all these states with trigger laws that said if Roe V Wade got overturned automatically abortion became legal in that state.

Sheri Byrne-Haber (she/her): So what people have to do is they have to either work within the confines of their state trying to get out there and elect people who are going to overturn those laws internally with their states or they have to move to States that are are going to protect women's rights.

Nadine Vogel: But that you know the problem is that changes by the day and they think one state is OK, and then you see the needle.

Sheri Byrne-Haber (she/her): It can alter over time and it's all about who's in power.

Sheri Byrne-Haber (she/her): You got to get out there, and you got to vote if you're if you're to disabled to go to the polls, then you gotta vote, you know you got to register absentee and and vote absentee because without that we've got nothing.

Nadine Vogel: yeah.

Norma: And they're trying to change all those laws also.

Norma: You know how you can actually get the vote in.

Sheri Byrne-Haber (she/her): Well that's that you know that's that's the group in power, trying to hang on to their power.

Norma: Um, hmm.

Nadine Vogel: but yet resulting in another discriminatory practice.

 

Norma: Yes.

Nadine Vogel: It right, I mean it kind of just keeps coming back it's like full circle so well.

Nadine Vogel: I hope that all of our listeners that you all heard Sheri you heard the things that we're talking about today and that you will take action on Sheri if someone wants to reach out to you, relative to your blog what's the best way to do that.

Sheri Byrne-Haber (she/her): So I just moved my blog to substack and my blog is called Access Ability so.

Sheri Byrne-Haber (she/her): Those two words um with with the A for ability, instead of the I, which is how it's spelled for accessibility and i've got a fairly unique last name Byrne hyphen Haber so you can find me on linkedin fairly easily as well, where I was just named a top voice for social impact, by the way.

Norma:  Awesome. 

Nadine Vogel: i'm not surprised.

Nadine Vogel: i'm not surprised and.

Sheri Byrne-Haber (she/her): Well. i'm really glad that linkedin recognized disability, as part of social impact that that was.

Sheri Byrne-Haber (she/her): That was.

Sheri Byrne-Haber (she/her): That was my biggest takeaway from that.

Nadine Vogel: And and for our listeners if you're not following Sheri right now go do it, I I have started to, and I think the the points that you make the conversations that you start, just like what we're having here so important, so Sheri. Thank you so very much for joining us.

Norma: Yes. Thank you very much.

Nadine Vogel: and

Nadine Vogel: I wish you the best of luck in.

Nadine Vogel: Everything that you're doing and I would very much like us to stay in touch.

Norma: Yes, please. 

Sheri Byrne-Haber (she/her): Appreciate the invitation and thanks for chatting with me.

Nadine Vogel: Absolutely norma another great episode. Se you on.

Norma: Yes. Thank you again and we just you know, we look forward to bringing you more content like this moving forward so disabled lives matter and don't you ever forget it.

Nadine Vogel: Absolutely. Alright everybody take care bye bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

S2-EP18_Nadine_and_Norma

Season 02, Episode 18
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: 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. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hey Norma.

Norma: Hey Nadine. Great to see you. You're gorgeous.

Nadine Vogel: Well, thank you dear. 

Norma: Good morning gorgeous.

Nadine Vogel: It's unintentional, but I'll take it if I can get it.

{Laughter.}

Nadine Vogel: Toall of our listeners Norma and Nadine here to welcome you to another episode of disabled lives matter we are more than just a podcast we are movement, and let me just tell you today's today's discussion is going to move you.

Nadine Vogel: Right norma it's gonna move you.

Norma. Absolutely.

Nadine Vogel: So for those who don't know I have an adult adult daughter, with significant disabilities that she was born with. She's 30 years old and actually in really good health but.

Nadine Vogel: She fell into some ill health and needed surgery so she went in for surgery, and it was supposed to be they said two to three days Okay, not a problem.

Nadine Vogel: Well, that turned into 10 because of complications went home two days came back for another five complication.

Nadine Vogel: went home again and then had even more severe complications and went back for another 12 so my rule with both my girls as my younger daughter has issues as well, is that, if they ever go in the hospital I move in with them and I don't leave until they leave.

Norma. Um hmm.

Nadine Vogel: And norma.

Norma: i'm sure you have the same feelings.

Norma: Oh, absolutely.

Nadine Vogel: Right, I think everybody in the hospital needs that advocate with them.

Nadine Vogel: Even if they are a great advocate, but especially us, you know our daughters, they have disabilities, they really need us there.

Norma: Yes. Absolutely.

Nadine Vogel: We went to the administration of the hospital, we got in writing.

Nadine Vogel: special permission, I want to get some writing ahead of time, so they couldn't kick me out after visiting hours.

Nadine Vogel: You know I had I had to give a clinical reason they wanted clinical reasons why I had to stay so, I gave it to him, they they approved it so not a problem we were there, but I gotta tell you, you know i'm going to write a book someday that just says, I got shit to say.

Norma: {Laughter.}

Nadine Vogel: Cause when it comes to.

Nadine Vogel: Well, I should say, that about a lot of things, but when it comes to disability, being a parent of a child, with disability and especially against the medical care norma I bet you to have shit to say.

Norma: Absolutely and like your daughter my daughter is generally healthy oftentimes when they have some medical issues, the attention and the detail to making sure that they find whatever it is not there.

Nadine Vogel: Right. I mean.

Nadine Vogel: It goes from like one extreme to the other, I mean, and this is not to say we haven't had some really great experiences. with the surgeon.

Nadine Vogel: and other things, but oh my gosh oh my gosh you know at one point, and I'm all over the place right, but on one of the admissions they thought Maybe she had on one of these infectious diseases, so they have protocols for you we had a gown mask the whole bit so one of the key.

Nadine Vogel: Things to know if you have that is that the person has like uncontrollable diarrhea.

Nadine Vogel: Well for two days, three days, she hadn't even gone to the bathroom so that should be a sign.

Nadine Vogel: She doesn't have that.

Norma: Exactly.

Nadine Vogel: She finally does go to bathroom the nurse has the sample sends it down.

Nadine Vogel: The nurse comes back up a few hours later, and says you're gonna kill me.

Norma: Oh, oh.

Nadine Vogel: I labeled the sample wrong, we have to start all over again.

Norma: Are you serious. No way.

Nadine Vogel: yeah we can't let her out of this sterile.  I was like i'm gonna kill you really and, by the way, just you really think she has.

Nadine Vogel: Oh, my gosh then we had and by the way in one wing of the hospital, for I would say, you know 20 of the 30 days it was absolutely fabulous it's actually an oncology floor.

Norma: Hmm.

Nadine Vogel: And they were just amazing there, but we were in more of the general floor ay,ya,yay we had a we had a nurse one night, who are one day she was a she was only like one day a week, and she was so flustered so flustered.

Nadine Vogel: And, to the point of she got wind that you know I knew a lot about not i'm not a licensed nurse or doctor I could just play one on T-V.

Nadine Vogel: So she learned that I had a lot of knowledge, she got so flustered with things at one point, like she was giving me stuff to give to Gretchen orally not a problem, she. hands me a

Nadine Vogel: freakin thing a syringe and says, you know, can you put this in the I-V and I was like.

Nadine Vogel: Okay, really, really no.

Nadine Vogel: I cannot she goes i'm just so flustered i'm busy i'm like okay not my problem, not my problem and the thing that really drives me let, let me just say what really drives me crazy and I know this is for anyone out there, that has a disability, that is living with a lifelong disability.

Nadine Vogel: Is if you go into a teaching hospital, where they have the residents.

Norma: Um, hmm.

Nadine Vogel: Now, I have the utmost respect for what they have to go through to become doctors but I refer to the residence is the minions okay.

Norma: Yeah.

Nadine Vogel: Oh, my God, I mean they have to respect if someone has a disability, they're 30 years old, they have to respect this person really knows their body.

Norma: Yes.

Nadine Vogel: They know what they need they know if something is different right. so my daughter has issues with her veins I mean like really bad. issues.

Nadine Vogel: Where to get a vein, even just for blood, they have to use an ultrasound.

Norma: Oh wow.

Nadine Vogel: Special tech, they can only use the ultrasound and get it.

Norma: Hum.

Nadine Vogel: So.

Nadine Vogel: Bad veins oh everybody says that.

Norma: Oh.

Nadine Vogel: I know, everybody says that.

Nadine Vogel: But she gets a lot of blood test she knows I know.

Norma: Um, hmm.

Nadine Vogel: I don't just stick i'm really good i'm gonna look, we don't need the machine.

Norma: Oh.

Nadine Vogel: Right now, this is ready to second this back to the hospital and I said, you have a you have records, you could see we had to have vascular come in because of the veins.

Nadine Vogel: No no i'm good i'm good i'm like she's not a pin cushion so I had this damn nurse, who said we don't have anyone in the E-R right now, who can do the ultrasound so we're going to send up a paramedic who really knows how to do.

Nadine Vogel: The how can in the entire E-R, this is a major major hospital doesn't know how to use the ultrasound really.

Nadine Vogel: They bring one of the E-R doctors over he says, you know I think I can do this i've tried I'm not great, but I tried it before i'm like you're gonna try this.

Norma: You think.

Nadine Vogel: My daughter is so sick you're going to add this so.

Nadine Vogel: Let him do it said can't do it, even with the ultrasound so I said well nobody's touching her so I don't care if we have to sit here until tomorrow, this is a huge hospital someone has an ultrasound someplace you're going to do it.

Norma: Um, hmm.

Nadine Vogel: So we're waiting there, and all of a sudden this doctor this walk by a few different times says, are you guys Okay, do you need anything.

Nadine Vogel: I said no we're not okay I explain the situation he says well i'm head of the E-R he said, I know how to do that I train the doctors on how to do that, we have the ultrasound down the hall.

Norma: What.

Nadine Vogel: So I.

Nadine Vogel: Your nurse is saying he goes you maybe you miss understood.

Nadine Vogel: Like no you think because she has a disability, she miss understood what was being said you think cuz i'm like the crazy mother i'm misunderstanding, I don't think so, I said you get that nurse over here now.

Norma: Um, hmm.

Nadine Vogel: And I made him get her over.

Nadine Vogel: And said could you explain to him what you told us and confirm that you said blah blah blah blah.

Norma: Right.

Nadine Vogel: She got really quiet.

Nadine Vogel: And I said.

Nadine Vogel: Or did you just lie to us because you think she has disabilities she's not going to know the difference.

Norma: Right. Oh my God.

Nadine Vogel: So she says, well, I wasn't we have protocol and I can't just get the head of the E-R just because you want somebody that's right.

Nadine Vogel: I said you have to respect your patients number one and not assume that if someone has a disability or looks like to have a cognitive disability that they don't know what they are doing.

Norma: And yet the advocate is right there, her mother.

Nadine Vogel: Right, right. I was crazy. so he's like you know what i'll take care of it and so she was like you know protocol this and that, so I can't i'm not allowed to just go to here so then you guys have a bigger issue and I told the E-R doctor I said so, you could tell she lied to me.

Nadine Vogel: hey do you think she can validate why she liked to me, ultimately, she reports to you and works for you, so what are you going to do that.

Norma: Hmm.

Nadine Vogel: Hello.

Norma: Okay.

Nadine Vogel: Right, so that was the first admission. The second admission was also a disaster, but that was the second admission for the first one, we came in and it was straight to surgery.

Nadine Vogel: The third admission come back in through E-R the surgical team is waiting they know who we are, but you have to go through the E-R first anyway.

Nadine Vogel: So I was really excited we get there, the head of the E-R different guy says, I read all the notes, I know you know we have to, we have to get a line in her I know she's really a hard stick he said i'm going to get someone who's really good with the ultrasound.

Nadine Vogel: Great they learn the guy comes with the ultrasound.

Nadine Vogel: So I think he stuck her four times, even with the ultrasound he couldn't get it.

Norma: Wow.

Nadine Vogel: Right, so I said we're done not doing this anymore, so he said, let me get the head of the E-R. Fine get the head of the E-R.  Head of the E-R says.

Nadine Vogel: I think I can do this, let Let me try i'm like, why are you trying I said put a damn line in her neck right put a central line.

Nadine Vogel: Oh, we have you know their standards we can't just put a central line in because there's risk of infection, I was like well how much risk is there to keep sticking my daughter who's in severe pain with 101 fever.

Norma: Yes.

Nadine Vogel: Developing sepsis from a surgery.

Norma: Jesus.

Nadine Vogel: Really.

Norma: Um, i'm so sorry.

Nadine Vogel: But then I said call vascular team down, let them do it they can do it they've worked with her before oh that's what we call they won't come down they don't think it's an emergency, we need to determine and they leave at three 3:30 and it's three o'clock so you know.

Norma: Oh, my goodness.

Nadine Vogel: Again, like do you treat all your patients like this, or just patients that have disabilities.

Norma: Okay.

Nadine Vogel: And maybe you think crazy mom is here and.

Nadine Vogel: I was crazy, can I just tell you, in the end they stuck her eight.

Nadine Vogel: Times eight. different times.

Nadine Vogel: Black and blue all over.

Norma: Oh my Goodness.

Nadine Vogel: And remember. she just got out of the hospital so she was already black and blue.

Norma: Yes.

Nadine Vogel: And then he said all right we're gonna do a central line I was like so what i've been asking for for hours.

Norma: all the time.

Nadine Vogel: He said, well, we have to meet criteria so what's the criteria almost kill the patient doing what you're doing so you can do that.

Norma: Isn't that's something.

Nadine Vogel: I don't feel like you do this to everybody.

Nadine Vogel: Unbelieveable. Yes.

Norma: What did he say I mean, how do they justify that.

Nadine Vogel: We say Oh, we have to justify it because it's that's our rules it's criteria, and I said I think that's yours i'd like to see, I said, can I see it in writing, it has to your hospital everything has to be in writing and documented can I see the documentation.

Norma: Um, hmm.

Nadine Vogel: We don't just keep that out, I mean.

Nadine Vogel: I run the E-R I know what it is.

Norma: OK. Hmm.

Nadine Vogel: OK. So.

Nadine Vogel: You go through all of these crazy things.

Nadine Vogel: Why, you came to the hospital in the first place.

Norma: yeah It makes you really incredibly nervous about having to go.

Norma: To the hospital.

Nadine Vogel: Absolutely.

Norma: I have a girlfriend she just came out and she she has issues she doesn't have disabilities but she does have a lot of health issues, and if you don't advocate for yourself and tell them.

Norma: about your body and what's going on and what you know about handling and what you can, and you know your blood type and all these things they don't really even read the notes. Not too long ago I actually had to go to the emergency room I had swallowed a chicken bone. {slight chuckle}

Norma: And I told them, you know, and throat was all sore and I told them that what had happened they didn't put that in any of my notes and we're treating me as if I had a heart attack they wanted to give me an aspirin they want to take all this different stuff. They didn't read the notes. I told them what had happened.

Nadine Vogel: Right.

Norma: And they never put it in the notes so they're assuming because I was feeling chest pains that it was.

Norma: A possible heart attack.

Nadine Vogel: Right.

Norma: How really scary is that.

Nadine Vogel: Absolutely, And you know like, there are certain drugs Gretchen you know my daughter can't take because of allergies and so it's like they don't believe her or she was exaggerating so tell me precisely well, what was the reaction and how long ago, did you have that reaction and.

Norma: Hmm. Wow.

Nadine Vogel: When she was going in for surgery so she spent three months in neonatal intensive care unit and she's a lot of medical trauma right in her years.

Nadine Vogel: So. it's very upsetting when she goes in she's very nervous about going for surgery.

Norma: Sure.

Nadine Voge: So I said you need to give her enough medication in pre op.

Nadine Vogel: So that she's out because if she sees she take her in the O-R and she's seeing everything it's really bad.

Nadine Vogel: We know what we're doing and I said look she has a lot of anxiety, she has post traumatic stress that's all medical related you know we know what we're doing.

Nadine Vogel: You know and when I finally and I said oh my God, this is 500 times, you are the medical expert I don't take that away from you i'm my daughter's expert and Oh, by the way, she's her own expert.

Norma: Exactly.

Nadine Vogel: So we have to, we have to come together and collaborate and listen.

Norma: Yes.

Nadine Vogel: Now i'll tell you i'm just on so many things, but I will say fast forward 3rd admission we're getting discharged.

Nadine Vogel: Where i'm sitting with her waiting for the you know the resident to do all of the you know all the medications right.

Norma: Yeah.

Nadine Vogel: Give us the orders to go home, this is so funny that the charge nurse comes in the room and hands me her cell phone and she says the doctors on the phone for you and I said for me why.

Nadine Vogel: So the resident gets on the phone, he says.

Nadine Vogel: Before I write these orders, I want to go through, one by one, all the medications I want to make sure that you're on board that i'm in the right medications the right dose and I was like oh my gosh mission accomplished I have trained one resident.

Nadine Vogel: Out of the gazillions that are out there on how to do this because I will tell you check this out first she was on she developed fluid around her heart as one of the complications.

Norma: Hmm.  

Nadine Vogel: So. she needs heart medicine.

Nadine Vogel: we've go home, and this was after the first admission we refilled the medication and we noticed that it says, I think it says two pills a day.

Norma: Hmm.  

Nadine Vogel: And she was in the hospital she was getting one.

Norma: Okay.

Nadine Vogel: So nobody said anything that changed.

Norma: Right.

Nadine Vogel: But I was all nervous so.

Norma: Hmm.  

Nadine Vogel: So I tell the pharmacy and they said well that's the order so like all right, so I had her so my daughter, called the cardiology department three times left messages with the issue we didn't get a call.  This is a.

Nadine Vogel: Major hospital so okay let's call the surgeon's office, because it was the surgeons resident that wrote that order.

Nadine Vogel: We don't hear. So we go into the hospital we're in the E-R and the surgical team comes down and the first thing I said was I said, you know before we get any further, I said, I have a question and we explained what happened.

Nadine Vogel: So one of the doctors and he's such an idiot I actually told his boss the senior surgeon, I actually thought he was a resident he's such an idiot.

Nadine Vogel: So, because he seems like he knows enough like he's still in training.

Norma: Right.

Nadine Vogel: So I asked him about the heart medicine so his first reaction was.

Nadine Vogel: I don't know i'm not a cardiologist you need to call them we don't we don't deal with that and I said well this doctor's name is the doctor on your surgical team who wrote. The prescription.

Norma: Hmm. Um, hmm.
 

Nadine Vogel: So I hope you know about that.

Norma: Okay.

Nadine Vogel: And then we and Gretchen explains that you know the difference and he's like.

Nadine Vogel: I don't know about this area, what do you want to take one did you want to take two.

Norma: Huh.

Nadine Vogel: That's medication, that borders on medical malpractice.

Nadine Vogel: Did you just say that to my daughter.

Norma: wow.

Nadine Vogel: Is it because she has disabilities, and your like well whatever 

Norma: Yeah, exactly.

Nadine Vogel: Maybe it is and maybe it isn't.

Nadine Vogel: but either way, I wanted to lose my mind.

Norma: Absolutely. Even like you said borders on malpractice and doesn't make any sense, and that's what's so so scary about it because, like you say.

Norma: You know you're daughter has disabilities, but she's perfectly capable of you know, sharing she knows herself she knows her body, she knows, and she has you who knows, so why would they even doubt.

Nadine Vogel: I mean really there's almost no words and then we had a situation where all this happened a few times so she has issues with swallowing so we know like major narcotics like you know you when she's under anesthesia they have to be careful right.

Norma: Um,hmm.  

Nadine Vogel: So she stays away when she's in pain from things like.

Nadine Vogel: morphine because it can shut everything down.

Norma: Sure.

Nadine Vogel: she's in pain and she asked for Motrin.

Nadine Vogel: and she said maybe you could just give me like you like three motrin, like something a little stronger like a strong version of motrin.

Norma: Yes.

Nadine Vogel: We don't have an order for motrin, but we can give you morphine.

Norma: What.

Nadine Vogel: i'm like.

Nadine Vogel: Okay, we have an opioid crisis in this country.

Norma: Yeah.

Nadine Vogel: Right. We have a drug crisis.

Norma: Yeah.

Nadine Vogel: You are giving people hard drugs, you have someone here who knows her body and is asking for motrin.

Norma: Um, hmm.  

Nadine Vogel: And your pushing morphine.

Norma: Wow.

Nadine Vogel: I can't count how many doctors, and how many nurses. did that.

Norma: interesting.

Nadine Vogel: I was like morphine motrin which one.

Norma: Morphine. Isn't that addictive.

Norma: wow.

Nadine Vogel: And then, when she said she couldn't do the morphine and they're like well how about oxycodone i'm like.

Norma: Oh, my God.

Nadine Vogel: Now again The good news is Gretchen you know my daughter knows her body, and she knows, she knows the medications she knows the side effects, she was very clear with them when she could and couldn't do.

Norma: yeah.

Nadine Vogel: it's a gamble.

Norma: scary wow.

Nadine Vogel: And then, you know when she takes the drugs and she's like more out of it, and then it affects like her speech.

Norma: yes.

Nadine Vogel: Then you have a mask on the nurse has a mask on. right.

Nadine Vogel: So it's more difficult to understand her.

Norma: Yes.

Nadine Vogel: so again, it really occurred to me if I wasn't there because she would ask for something or they asked her a question and she'd respond.

Nadine Vogel: And what what like they didn't understand.

Nadine Vogel: and

Nadine Vogel: Okay, then find a way to understand, so instead they would just looked to me, I was there that was fine. What I wasn't there.

Norma: What if you weren't there.

Norma: Yes.

Nadine Vogel: Right. So, and so many of them I was like hello, you need to figure out to communicate with the patient.

Nadine Vogel: Yes, I went into the lounge down the hall, and I actually took a picture of it.

Nadine Vogel: I should, we should post it on here, because it was a photo of a poster that they have kind of all over the floors and it talks about language interpretation should anyone need it.

Norma: Um, hmm.  

Nadine Vogel: It had every damn language on it, but do you know it didn't have sign language.

Norma: Wow.

Nadine Vogel: Not that my daughter understands sign language, but that wasn't the point.

Norma: That's not the point.

Nadine Vogel: Right, at this point, it really wasn't the point, it was just like.

Nadine Vogel: The point of this whole conversation we have to have the medical community understand that disabled lives matter.

Norma: yep.

Nadine Vogel: Right. And and just because someone is disabled does not mean they are less than.

Norma: that's right.

Nadine Vogel: That should not mean that communicating with them is less important.

Norma: that's right.

Nadine Vogel: Or that their outcome is less important, I will say from the senior surgeon his team, you know, he did not see her outcomes less important, but just in general, like. You know it was making me crazy.

Norma: Right.

Nadine Vogel: So when they come in every few hours and do the vitals, right. They do blood pressure, heart, temperature, and they do saturation you know and Gretchen's great I mean every single time, what is this number what is that number what is that number.

Nadine Vogel: So they finally got to realize that they had to turn the machine towards her when they did it so she could see it.

Nadine Vogel: And what I realized was unless you're asking they don't they don't want you to see it.

Norma: Um, hmm.  They don't.

Nadine Vogel: They turn it towards them they don't even tell you what it is.

Norma: Right.

Norma: that's right and if you're not asking any questions they're not going to provide any information.

Nadine Vogel: Right. And, and you know my husband now we had 13 years of in home R-N care for my older daughter was 13 years my younger daughter was five years, so we had a period where we had R-N's around the clock for both girls in my house right so we've learned a lot over the years right.

Norma: Yes.

Nadine Vogel: Separate from hospital stays the R-N's trained us to do so, we know what questions to ask, we know what different levels mean and it's interesting because you have to get over this hump with these folks.

Norma: Yes.

Nadine Vogel: They almost look at you like, why do you know this, why are you asking.

Norma: Exactly they always miss trust, the ones who actually are educated about their own health.

Nadine Vogel: Yes, have you noticed that. 

Norma: I have.

Nadine Vogel: And I'm just like.

Nadine Vogel: I not a doctor, but I play one on TV okay.

Norma: Um, hmm.

Nadine Vogel: I mean really so like when they did um cat scans or MRIs you know they'd say you know, so the results are, and you know you get the results in the chart online everything I said that's fine, I want to see the image.

Norma: Yes.

Nadine Vogel: And they're like well, I remember one one doctor I think we were still in the E-R maybe said, well, are you really going to know what you're looking at, and I said actually I can read a cat scan I can read an MRI.

Norma: Um, hmm.  

Nadine Vogel: I can read an E-K-G yes I actually can.

Nadine Vogel: Any other questions.

Norma: i'm sure that's surprised him.

Nadine Vogel: Right, so when they did it.

Nadine Vogel: At one point, they did like a second cat scan of the lungs and so they weren't gonna show it to me and I said i'd like to see it, I want to see if the fluid is gone down and like they looked at me like and then they looked over to the doctor like and said is that okay.

Norma: No can she see that.

Norma: Right. 

Nadine Vogel: And then I made a comment about where I saw the fluid going and part of the one collapsing, and it was like I like no one said anything because they were, how do we respond to her.

Norma: Right.

Norma: and have a sign in for patients right they said that we ought to have certain rights.

Norma: But they don't really expect you to know anything about your own health and if you do.

Norma: They want you to act like.

Norma: What they had you sign.

Norma: That you don't know anything about your own rights.

Nadine Vogel: Norma that that is exactly it because it's it's based on their criteria.

Norma: Yes.

Nadine Vogel: or their definition of rights and it's also based unfortunately on their bias.

Norma: Yes.

Nadine Vogel: You know that if someone visibly looks disabled.

Nadine Vogel: And actually if they think there's a cognitive disability at all, which which with Gretchen there is not, but if they think there is.

Nadine Vogel: They just go into like auto mode.

Norma: Um, hmm.

Nadine Vogel: Right. And the one thing, the one thing I love about the teaching hospitals is i'm on a mission when I'm there with Gretchen i'm on a mission i'm going to educate these doctors.

Nadine Vogel: And i'm not educating them on medicine. I'm I'm

Norma: Right.

Norma: You just wanna.

Nadine Vogel: i'm just curious did you find norma when when Sierra was young right when you had we were working with pediatric specialist it was different the pediatric specialists who work with kids with disabilities and they really know how to engage with the parent.

Nadine Vogel: And with the person with a disability.

Norma: Yeah, because they are dealing with babies mostly.

Norma: As you age it changes.

Norma: I don't know why.

Nadine Vogel: Like calling for it, you know so one of the doctor, she was calling for one of the specialist that's not a new patient.

Nadine Vogel: But the doctor, she was seeing retired, so he said, you need to see this one specialist she she at this point, she was losing a pound and a half a day.

Nadine Vogel: She called she explains the whole thing had surgery all this, I really need to be seen, well, we can try to squeeze you in in the middle of August now, this was like the first of June.

Norma: No way. Ugh.

Nadine Vogel: I said Okay, if this person loses a permanent half a day, between now and then you don't have to worry she'll be dead.

Norma: And they didn't notice that I mean.

Nadine Vogel: Well here's the response i'm really sorry but that's all we can do.

Norma: Oh my God.

Nadine Vogel: Oh my God, tell me that's not medical malpractice.

Norma: So, how did you change their mind.

Norma: Did you have like yelling and scream.

Norma: What I do is that I threaten to call the media.

Norma: You know, i'm getting ready to call ABC, CBS, you better do something.

Nadine Vogel: So here's what I, so I did that on one occassion.

Nadine Vogel: And here's what I got it got it so we're in Florida right and I got met with you know, during covid.

Nadine Vogel: A lot of people moved to Florida move so so we were already overcrowded with people who are aging and having to deal and everybody came down due to Covid and then they didn't leave, so now we have double and triple the amount of people with the same amount of staff.

Nadine Vogel: And i'm like.

Norma: Yes.

Nadine Vogel: I do understand that I do.

Nadine Vogel: But think about what you're saying to me.

Nadine Vogel: Just think it's like telling me okay she's bleeding to death, she may be has or we can see her in six hours, like, I mean it makes no sense.

Norma: None.

Nadine Vogel: Then it makes no sense, so what you know what you and then, so I went to some her other team of doctors to say.

Nadine Vogel: Can you do me a favor can you place a call for us here's what's going on in this office and they said no problem, but then they came back and told Gretchen we tried and they won't listen to us either.

Norma: So, can you imagine you're an advocate for your daughter, you are making sure and she's making sure can you imagine with people who don't know what to ask for and what to say how many people are basically dying.

Norma: Because they don't have people, who fight for them, and people who you know we can make them listen, because we know how to do that, but the ones who are really at their mercy that's a scary thought.

Nadine Vogel: We had a situation where, when they were trying to do all the sticks so she has some very contracted left arm and hand and she had surgery, when she was like five.

Nadine Vogel: And so, no needles nothing goes in that arm right, because we don't know how things are going to react, and I remember the head of the E-R saying.

Nadine Vogel: Well i'm going to go up high above the surgery we're not going to go anywhere near where she had surgery on the on the lower arm or the hand and I said well but isn't the upper arm connected to the lower arm.

Norma: yeah.

Nadine Vogel: I mean I don't have to be a doctor to know yeah this phone connected was used to be a song, I think we were kids right.

Norma: Okay yeah.

Nadine Vogel:  you know. the ankle bones connected to the.

Norma: exactly.

Nadine Vogel: Things things travel, no no  no i'm going to do it, like in a certain spot it's going to be fine, how do you know that are you a neurologist.

Norma: wow.

Nadine Vogel: I mean really I could, as you can tell, I am ranting i'm sorry to our listeners.

Norma: No.

Norma: But you need to you need to write.

Norma: An article about all of this.

Nadine Vogel: Oh i'm writing a damn book.

Norma: Absolutely a book, but at least start with an article um and wow what that's just crazy to me.

Nadine Vogel: Right and actually I do want to write an article, you know what even though was here in Florida, and I will go to.

Nadine Vogel: Any patients here. I want this in the New York Times. and the Wall Street Journal.

Norma: Absolutely.

Nadine Vogel: I want we need to change this.

Norma: Put an opinion piece they seem to use opinion pieces very quickly.

Norma: But definitely you need to write something about what you experienced you and your daughter because that's that's just inexcusable to me.

Norma: And it just shows from a from a you know a lot of bigger level that things have fallen through the cracks that should not be able to when it comes to our Community.

Norma: is bad enough with the general Community but in our communities, it's like we're just throwaways that's not going to happen for parents like us that's just not. going to happen.

Nadine Vogel: And there has to be research, by the way, I think it was done in Boston maybe a couple years ago and the doctors actually in this research and survey acknowledged.

Norma: Hmm.

Nadine Vogel: yeah they viewed patients with. disabilities.

Norma: Um, hmm.

Nadine Vogel: You know, differently um you know and then look the system, just the system anyway in teaching us the right, so you need something you go to your nurse your nurse sends an email or some communication to the. resident

Nadine Vogel: Right and then just wait for the resident to get back or the resident has to go to the other doctor like by the time you get what you need you know. God only knows.

Norma: Right.

Nadine Vogel: The other thing that made me a little crazy was they have computers right in the room and that's where when the nurse comes in that's who's on you know checking everything giving.

Norma: Yeah.

Nadine Vogel: The doctors in the morning when they do their rounds.

Nadine Vogel: I would assume and again this is just me, maybe, maybe some hospitals actually do it this way when they do their rounds they come in the room, the computer's right there.

Nadine Vogel: to write the orders anything comments changes, whatever do it when you there no they round with all their patients around the hospital and then they sit down and write the orders.

Norma: well.that's crazy, you could be dead.

Nadine Vogel: Thank you.

Nadine Vogel: Right you remember at nine in the morning, what you said to the first patient at seven in the morning.

Norma: That doesn't even.

Norma: no

Nadine Vogel: Right, and you know the funny thing is when the senior doctors there, and all the residents, I do laugh so he'll say you know, to do something and in unison, all the hands go down right.

Nadine Vogel: to write it.

Nadine Vogel: But it and I, you know i'm very well, I really don't have patience, but when it comes to this, I try not to yell and scream I really try to be calm.

Nadine Vogel: And so, one morning it was like just blowing up blowing up blowing up, and so the the surgeon came in, with his team of residents.

Nadine Vogel: And he saw I was like I was fuming and he said Okay, well, we gotta go I said no, no, you can't go, I have a list a mile long that we're going to address and we're going to address now.

Nadine Vogel: he's like I have to get the surgery, so I understand that, but you know what we already had surgery so we're we're ahead.

Nadine Vogel: in the order, and this is a major issue, so he Let he let.

Nadine Vogel: The team go, he said, all right, let me, let them go i'll be back in you know, in a few minutes, let me just do whatever it is here to do next, I said okay.

Nadine Vogel: I figured I wasn't gonna see him, for you know kind of him, but to his credit 10 minutes later he came back he came back by himself.

Nadine Vogel: And he said, you know nadine he said i've seen you every single morning right every single morning for days and said i'm I could tell you were really pissed off.

Nadine Vogel: And I said yes, I was and here's why, and I kind of you know just went through the litany of stuff and he said well that's why I came back and I came back by myself and again, to his credit.

Nadine Vogel: He picked up the phone right, while we were there, made a couple of calls Okay, but when I was mad about is he should have done this with the residents there because it would.

Norma: So he could teach them.

Nadine Vogel: Be a learning for them.

Nadine Vogel: Exactly

Norma: Exactly

Nadine Vogel: It's not just about teaching them clinical skills they have to have these other skills.

Norma: right.

Nadine Vogel: Ugh. I just.

Norma: well.

Nadine Vogel: It just makes me crazy.

Norma: it's just another thing to add.

Norma: To the litany of things that we have to do as advocates as parents. and as people who are.

Norma: Trying to make a difference in this crazy.

Norma: Space we call society.

Norma: And and healthcare is a major issue, I saw something on when I was doing a little research prior to getting on today about you know my you know mount Sinai hospital big hospital New York and they actually have something it talks about tips on you know communicating with people different disabilities.

Nadine Vogel: Yes, I've seen it.

Norma: It's pretty cool but those those are actually general things that everybody knows.

Norma: correct. It's not medically focused.

Norma: Exactly.

Nadine Vogel: And I gotta tell you and I know we're running at a time our listeners are probably like oh Nadine please stop.

Nadine Vogel: But, but the thing is is.

Nadine Vogel: The companies springboard right we work with corporations with hospital all kinds of institutions to educate to train it's all about mainstream people with disabilities.

Norma: Yes.

Nadine Vogel: As part of that for years years.

Nadine Vogel: i've tried to get major hospitals, especially the teaching hospitals to allow us to come in and deliver disability etiquette and awareness.

Nadine Vogel: To the residents to the new nurses right and we're always Oh, we don't have time no budget you know every reason why not, and it just frustrates the Dickens out of me, and especially with something like this, I just you know if you don't have enough stress.

Nadine Vogel: This just as like you said a whole other layer and and because of what I do professionally even more stress because i'm like I don't understand how I can get these institutions to understand how important this is.

Norma: It's they just don't care and we have to make them care.

Nadine Vogel: Right and they're in the business supposedly of caring.

Norma: You would think, the reality is, I mean you just experienced how much they don't.

Nadine Vogel: I know I know so anyway, I I thank you for letting me rant today Norma.

Norma: No. I appreciate it. I need to have you come back and do a little more ranting on my program. So I'll call you about that one.

{Laughter.}

Norma: Because this is such an important topic, people are dealing with on a daily basis nobody's really talking about.

Norma: In in the media in the you know there's so many things and I do my.

Norma: tips tools and conversations for busy parents of children with special needs, and this is a topic that we can discuss and just share your experience and really know that let people know that we're not putting up and we're not going to stop until they fix it.

Nadine Vogel: And again it's not the first hospitalization I you know.

Norma: It's not.

Nadine Vogel: I know how it goes, but the thing is, I would have hoped in all these years, things would have improved.

Nadine Vogel: And and they haven't.

Norma: that's the whole point.

Nadine Vogel: And there not you know, unless we go unless they allow a springboard someone to come in and really make some meaningful change change is not going to just happen.

Nadine Vogel: In the end.

Norma: No.

Nadine Vogel: right, it has it has to be, it has to be institutionalized you know they talk about all criteria have to stick so many times before we do this let's add this to that criteria.

Nadine Vogel: That they need to know so you know, I just want to challenge for anyone who is listening to this.

Nadine Vogel: If you know of someone who runs a medical school and nursing school and you can forward this to them and have them reach out, please do so if you are someone with a disability and has had similar experiences, or you have your a parent of someone with a disability share. Write in. Tell us.

Norma: Yes, please. 

Nadine Vogel: If you are in the medical field.

Nadine Vogel: Yourself and you agree or disagree with what they're saying you know reach out to us we'd love to interview you include you in, and you know as i'm saying that.

Nadine Vogel: See that's where we should. I don't know is going to be willing to do that because we'll probably beat him up, but let me think about that, because that might be good to have some doctors on here. Some hospital.

Norma: Absolutely.

Nadine Vogel: administrators, or you know something like that.

Norma: Absolutely i'll look around too and see who we can find but yes please, we would love to get an understanding of their perspectives cause i'm sure I mean, I'm sure it's challenging in what they're dealing with you know all the pandemic.

Nadine Vogel: Right.

Norma: Fall out and all of that.

Nadine Vogel: I know.

Norma: But at the same time.

Nadine Vogel: But at the same time, we are here and we need them.

Norma: Yeah.

Nadine Vogel: Right well with that everybody, thank you for listening to my rant to Norma's. Norma's support of my.

Nadine Vogel: Norma will do another one where you can rant you pick a topic.

Norma: Okay {laughter.}

Nadine Vogel: And another great episode of disabled lives matter disabled lives really do matter, this is more than a podcast it's a movement it's an important one, and we look forward to talking with you next time bye bye everybody.

Norma: bye bye be blessed.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S2-Ep17_Ryan_Niemiller

Season 02, Episode 17
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Ryan Neimiller

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

 

Nadine Vogel: Hello everyone, this is nadine vogel your co host of disabled lives matter we are a podcast but actually we are more than a podcast we are a movement, and I am joined by the fabulous norma stanley my co host. hey norma.

Norma: Hey. Hi. How is everybody doing today.

Nadine Vogel: Well, I gotta tell you I am riding high high high high today and not because of a substance.

Nadine Vogel: But i'm riding high i'm riding high because we are interviewing Ryan Niemiller Ryan was born with a disability in both his arms, he is a self proclaimed cripple threat of comedy how cool is.

Nadine Vogel: that many of you may have.

Nadine Vogel: seen him on america's got talent, or some other world stage, because he is always on the road performing Ryan, thank you for joining us today.

Ryan Niemiller: Absolutely, thank you for having me I always love how people have to say self proclaimed because before you got to know who I am.

Ryan Niemiller: If someone just says he's the.

Ryan Niemiller: cripple triple threat they're going to be like what. ooh.

[laughter]

Ryan Niemiller: i've done that to people before when when they say that, like he's the cripple threat and i'll be like we just met how.

Ryan Niemiller: dare you who told you to call me that.

Nadine Vogel: Right and especially on a podcast called disabled lives matter right that would really be. interesting.

Ryan Niemiller: Exactly.

Nadine Vogel: So ah. you know, but you know what.

Nadine Vogel: i'm going to ask you about your childhood, and I'm going to ask you a bunch of questions, but before I do that talk to us about cripple threat of comedy. How'd that come about.

Ryan Niemiller: Yes, so that name originally um so i've done comedy now for about 16 years I have a background in theater But my main dream, when I was growing up was always to be a professional wrestler that was.

Ryan Niemiller: That was my first love of what performing.

Ryan Niemiller: Was.

Ryan Niemiller: was watching wrestling as a kid I fell in love with it, I still it's one of my favorite things in the world, to this day that I did not outgrow that.

Nadine Vogel: Like some people do I just love it.

Ryan Niemiller: makes me so happy so that was the name I thought of when I was going to be a pro wrestler and I trained to be a pro wrestler for about two or three months and it's really hard on the body it's not you know people always be like all that stuff's fake.

Ryan Niemiller: Like no it's scripted.

Ryan Niemiller: that's a very different thing there, there are beating the tar out of each other it's rough on the body.

Ryan Niemiller: But I loved the cripple name or the cripple threat name so much that I just kept it when I started doing stand up by this transition did that way and it's kind of stuck with me, ever since.

Norma: cool.

Nadine Vogel. it's a very stickable name, I like that.

Ryan Niemiller: Yeah I was actually shocked when I did america's got talent that they allowed me to refer to myself as that because you know they're they're very you know it's a big budget show that has a lot of advertising dollars in it.

Ryan Niemiller: So I was worried that we're gonna be like.

Ryan Niemiller: Because like when someone like me says cripple it's like empowering it's part of you know i'm using that word to empower.

Ryan Niemiller: myself when other people hear it, though.

Ryan Niemiller: You know able bodied people, or whatever you want to say when they hear a lot of people get like oh I don't know if this is.

Ryan Niemiller: OK, but fortunately, they Let me run with it and it worked out for me.

Nadine Vogel: Correct, no absolutely.

Nadine Vogel: So my question, Ryan is, you talked about your childhood wanting to be a wrestler what was that childhood like.

Ryan Niemiller: my childhood was very it's always hard when I say this, some people kind of turn an eye a little bit, but like growing up a lot of people assume like the disability would have been the hardest thing I had to deal with, but for me it was kind of the least of my concerns in a certain way.

Ryan Niemiller: But my parents did their best, but you know my dad had some issues with alcohol and stuff like that, so we were joking before we got on the air i'm an old trailer park kid that was kind of my upbringing.

Ryan Niemiller: We had six of us packed in a single wide trailer money was always difficult.

Ryan Niemiller: You know I didn't own a bed until I was in college just to kind of give you an idea of just sort of how it out worked for me, so you know that that part for me.

Ryan Niemiller: I think those were more of where my strength came from a lot of people always want to assume like oh I bet having a disability was hard i'm like no like surviving That was the hard.

Ryan Niemiller: Part. The disability it didn't help you know that had its own challenges, but for me it was like Okay, we got it we got to deal with all of this over here first so it's.

Ryan Niemiller: That the bright side of having a an upbringing like that, though, is that I know now as an adult when things are going better for me that, if anything, does happen, I can survive I got this you know. I might be wrong about but.

Nadine Vogel: Right.

Ryan Niemiller:  We can get through.

Nadine Vogel: Well, and I think, certainly the humor helps right so when or how did you know that you were is not just funny but hysterical.

[laughter]

Ryan Niemiller: Well, thank you for that that your words, not mine your words.

Ryan Niemiller: For me it honestly was around the same time it's like you know age four or five it was part of that survival instinct that you kind of get you kind of pick up because my hometown was maybe 3000 people it's a little town called DeMotte, Indiana.

Ryan Niemiller: it's about as big as it sounds.

Ryan Niemiller: Just a really tiny little.

Ryan Niemiller: Farming town, and I was the only person who had anything like what I have you know, I was not.

Ryan Niemiller: amongst a lot of other disabled peers.

Ryan Niemiller: So to speak so and I think we all can remember this isn't just for people with disabilities, but all of us know, like you remember, being a kid kids are mean you know like kids are.

Nadine Vogel: They can they can be very cruel.

Ryan Niemiller: So I had to learn quick like i'm the only one that looks like this that makes me a target.

Ryan Niemiller: I got to figure out how to make sure I don't get bullied.

Ryan Niemiller: And I just luckily was born with this kind of just quick wit and once I sort of learned that like if I make the jokes first whether it was about me or if I roasted them, you know, in some way. first.

Ryan Niemiller: they'd be like oh he's really funny we like him we don't need to pick on him because he's funny.

Ryan Niemiller: And, and that was sort of originally it was survival it wasn't any thought that I, you know when you're five years old, I wasn't like i'm going to be on america's got talent, or whatever you know.

Nadine Vogel: [laughter]

Ryan Niemiller: It's just. Being funny makes me feel good you know, and when people laugh it's like it's being a good center of attention and then just as time went on, I was like oh.

Ryan Niemiller: I always when I say this, it always sounds more sinister than I mean it to, but if you're funny people will do whatever you want.

Ryan Niemiller: You know, like like if they, like you, and you can make them laugh they're more willing to like you know work with you, and once I kind of figured that out there is power in this sort of transition into comedy and then 16 years later we're here now.

Nadine Vogel: No that's that's so true, I mean my my daughter's my daughter's 31 and has a myriad of disabilities, and I can remember the terrible bullying and things that she had to deal with and it's.

Nadine Vogel: You know it's kids are mean. It's uh I don't even know how else to say that kids kids are just mean but but.

Nadine Vogel: My concern is that kids grow up they become adults and we have adult bullies as well, so i'm curious What was your experience at A-G-T relative to that.

Ryan Niemiller: For me, you know growing up, I you know I mentioned, I never really was bullied because I kind of figured out.

Ryan Niemiller: How to be the funny guy.

Ryan Niemiller: That's how I was good, so I never got bullied I had way more trouble with the adult version of bullying I think than I ever did as a kid and and i've never been i've never been concerned with anyone calling me names like when you're an adult and someone calls you a name, whatever like.

Ryan Niemiller: That that doesn't affect me.

Ryan Niemiller: Personally, but I was dealing more with the stuff that like you don't really know how to prepare for as a kid you know, like when I started getting into the workforce people not wanting to hire me because they assume. that.

Ryan Niemiller: Oh, you have a disability, you can't do these jobs, what I wanted when I started getting interested in dating you know it takes a very strong individual to be with someone with a disability, because it's a different world if they haven't experienced it before.

Ryan Niemiller: And for a long time, like.

Ryan Niemiller: I understand that now intellectually, now that i'm married and kind of gone through the journey, but when you're first just like hey I think she's pretty, why does she think i'm disgusting.

Ryan Niemiller: it's not my fault, you know you start to have these these thoughts that you're dealing with so that was a lot worse for me was getting into the real world, so to speak.

Ryan Niemiller: and learning that and and A-G-T for me was kind of the culmination of my journey of accepting all of that.

Ryan Niemiller: Because having.

Ryan Niemiller: You know this is something I always try to tell people with disabilities who might not have made it in the journey, where I have yet is I had to learn that it's okay to be angry about it.

Ryan Niemiller: Because that's because I think we're always told when we have disabilities it's usually well meaning but people will tell you just be positive just be happy.

Ryan Niemiller: You know everything will be fine and that started to make me feel like I would try to do that and things weren't.

Ryan Niemiller: Changing you know things weren't being different so It made me feel like I was a failure, like, I was doing something wrong like I was the problem and once I got to the age and like a point in my life, where I acknowledged like.

Ryan Niemiller: hey it's okay to have a rough day every now and then.

Ryan Niemiller: You can have a day, where you're.

Ryan Niemiller: You know where you're mad about having the disability, you know what i'm having the days, where, for whatever I call them my crippled days, where i'm just dropping stuff more than I normally do or for whatever it is, like the buttons on my jeans just will not button, no matter what I.

Ryan Niemiller: do so i'm wearing sweatpants.

Ryan Niemiller: Today, you know those things still happen, and even though i'm good like i've had to give myself permission.

Ryan Niemiller: To to be like okay today sucks I wish I didn't have this today and that's okay tomorrow will be a different day we'll tackle it again.

Ryan Niemiller: And once I kind of got that into my brain that it was okay to do that, that, let me really take off and then A-G-T was sort of the big kind of the crescendo of that it was the the final product of me getting there.

Norma: Awesome. Wow well, I mean you've done so much so, what is your style of comedy, what is your favorite form and who was some you know some of your role models.

Ryan Niemiller: So for me my general i'm a storyteller is what I do it's a.

Ryan Niemiller: little bit of it comes from laziness so yeah.

Ryan Niemiller: If I just tell jokes and stories that have happened to me in my life I don't have to sit and think okay What do people think is funny.

Ryan Niemiller: If I just tell you things that I. like.

Ryan Niemiller: You know, so my style of comedy is just keeping my my eyes and ears open and paying attention and be like oh this person did this, this is funny to me let's talk about it.

Nadine Vogel: Right.

Ryan Niemiller: My. Probably the two biggest influences that I had comedy wise before I started, especially one of them is Dave Chappelle.

Norma: Um, hmm.

Ryan Niemiller: You know.

Ryan Niemiller: In any current controversies.

Ryan Niemiller: Notwithstanding just talking from a performance standpoint I think Dave chappelle was always he was like my example of he was like the end.

Ryan Niemiller: of any conversation about a topic.

Ryan Niemiller: And most things like yeah before a joke would become hacky, so, like if Dave chappelle is talking about Michael Jackson Michael Jackson jokes are done now.

Ryan Niemiller: If he's talking about you know he.

Ryan Niemiller: always had the final say.

Ryan Niemiller: you're not gonna top that.

Ryan Niemiller: And, and then the other person I always loved was Jim Gaffigan.

Nadine Vogel: And he actually grew up.

Ryan Niemiller: he's a little older than me, but he grew up in the same area of Indiana I did so, he was sort of a role model and that way that i'm like okay just he came from here, and he successful so being from this place, does it, you know disqualify me from success it's not an excuse you know I can go out there.

Norma: Right.

Nadine Vogel: So. Ryan, 

Nadine Vogel: So Ryan I one of the things I find challenging when it comes to disability is the need to always be inspirational.

Norma: Um, hmm.

Nadine Vogel: Right, no matter what you're doing professionally and i'm just curious if you've ever if you see yourself, or have ever seen yourself as inspirational or whatever your reaction is to that when people feel that way about you.

Ryan Niemiller: I will be honest that's that's never why I got into what I got into.

Nadine Vogel: Right.

Ryan Niemiller: Even when I was a kid I always found it so pompous when somebody would say i'm going to be an inspiration like who are you you don't get to make that call.

Ryan Niemiller: People are either inspired by you orr they're not you know you don't get to decide.

Ryan Niemiller: That that's the thing it's like it's like you can't just decide i'm gonna be i'm gonna be handsome well that's kind of how you know you are you're like that, just like the world, you know.

Ryan Niemiller: there's certain things like that so.

Ryan Niemiller: I never looked at that and I i've always to this day i've always hated it that there's this assumption that you have to be that.

Norma: Right.

Nadine Vogel: Right.

Ryan Niemiller: Now.

Ryan Niemiller: When I got into comedy and even like when I got onto A-G-T, which was a long term goal of mine.

Ryan Niemiller: I wasn't getting on the show thinking okay now so people are going to see it they're going to be so inspired by my story and they're going to try to do this i'll be honest i'm kind of just an attention whore.

Ryan Niemiller: And I like when people laugh at me I like being the center of attention, you know, like.

Ryan Niemiller: it's It makes me feel good.

Ryan Niemiller: To be that guy.

Ryan Niemiller: But then when I started getting like after I was on the show and I started getting emails and tweets and D-Ms and that type of thing.

Ryan Niemiller: From people with disabilities or parents of children with disabilities who are like hey, thank you for being one of us that's representing the Community in a positive light, I realized there was there is some power in that so you know I i've never wanted.

Ryan Niemiller: To be treated like an inspiration I don't that's not i'm just a guy trying to get through and i'm trying to succeed in the world that i'm in, but it does matter to people.

Ryan Niemiller: And you know i'm that's why i'm always very careful that i'm real when I was on A-G-T I was very clear that I did not want to be inspiration porn my job, my job wasn't to be oh wow.

Ryan Niemiller: Look at him, he can dress himself like yeah most of us, you know we can like people with disabilities are adaptable it's not.

Ryan Niemiller: You know, impressive because you learn how to do a.

Ryan Niemiller: thing you know that you just did it, so I was always very clear that I never wanted to be a disabled comedian I wanted to be a comedian who happens to have a disability, that was a very important.

Ryan Niemiller: distinction for me.

Nadine Vogel: Love it.

Norma: Yes.

Nadine Vogel: that's a great that's a great point for us to stop and move to commercial break and we'll be back in just a minute with the minute with the Ryan Miller, stay tuned everybody.

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

[COMMERCIAL]
If you're familiar with Springboard Consulting Disability Matters Events.  You won't want to miss out on the 2022 Disability Matters Asia-Pacific Conference & Awards Live-Stream. It's happening November 9 & 10, and it's being hosted by Manulife.  So, don't miss out! Visit www.consultspringboard.com for more information. Again, that's www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

Nadine Vogel: We are back today at disabled lives matter we're talking with Ryan Niemiller, you may know him from america's got talent or any place on a comedic world stage he's also known as the cripple threat of comedy we are having this fabulous conversation and.

Nadine Vogel: You know, one of the questions that jumps out for me Ryan is, you must over all these years you've probably had some amazing.

Nadine Vogel: moments amazing you know events, but is there one or two that just stand out for you is you know you would say, these are my proudest these these really rise to the top.

Ryan Niemiller: I mean it's probably the most obvious one is probably my run on america's got talent, you know, especially you know I ended up getting third place overall in my season.

Ryan Niemiller: And number one that's tough for any comedian to do on that show it's that shows not really designed for comedians per se, because a lot of people don't think comedy is a talent.

Ryan Niemiller: Because if you're good you're good at it, it just looks like you're talking you know even if you hate juggling if someone's good at it.

Ryan Niemiller: You can.

Ryan Niemiller: You can tell like okay they're doing something you know.

Ryan Niemiller: comedy not so much.

Ryan Niemiller: But, but for me that was such a culmination of a long journey, for me, not not not to I don't want to get to like sappy or or negative about it, but in the entertainment business it's still very hard to break through if you have a very noticeable physical disability like I do.

Ryan Niemiller: You know it's not something that you.

Ryan Niemiller: Can you can hide when necessary, or whatever they said, you know so.

Ryan Niemiller: I tried to I even tried to get on america's got talent for five years before they said yes, and it was sort of like breaking those walls down that like you know just because I have this doesn't mean that like.

Ryan Niemiller: People are going to react negatively to it or judge you and an unfair way So for me to finally break through and.

Ryan Niemiller: You know, get to be one of the few people with the limb difference, who got to be not only on television but put in a positive light I wasn't that inspiration porn we were talking about before the break you know, it was this guy is just funny and he did well.

Ryan Niemiller: So, to make the top three for that, and especially with you know, I was on the season that Cody Lee won who is another represent.

Ryan Niemiller: representative of.

Ryan Niemiller: You know the disabled community, so the fact that, like two of the top three of our season, where you know people on the team.

Ryan Niemiller: You know, for lack of a better phrase was that was an amazing honor to be a part of that and it showed that I had been right.

Ryan Niemiller: You know, all those years, when I was entertainment and getting told no by people who are like yeah nobody wants to see a gimmick.

Ryan Niemiller: You know how they would describe but nobody wants to say you know that's not going to last you can't do that, to know that, like just being myself, I was correct It made me feel.

Ryan Niemiller: Both vindicated and just I couldn't have been prouder for that run.

Norma: Awesome.

Nadine Vogel: Right no that makes sense for sure so i'm curious you know we talked about sometimes how disabilities impact us negatively um but then sometimes they give us quote unquote a leg up in some ways, do you feel that and, if so, what was that beneficial side of the disability.

Ryan Niemiller: yeah yeah So for me, I mean talking about the negatives, I think there's there's always the obvious ones, you know there's certain things that.

Ryan Niemiller: You know i'm pretty self sufficient I i've been able to live by myself, for years I travel by myself, like i'm fortunate I have that, but there are certain things I can't do and and.

Ryan Niemiller: it's always hard because, like it a lot of context people don't want to hear about what you can't do they want to hear about what you can what you've overcome what you've you know taken care of.

Ryan Niemiller: So there are there are those negatives, but, for me, I i've always tried to and it took me a while to get there, but nowadays, I always try to.

Ryan Niemiller: Put the positive spin on it, because there there's a lot of things that I think are very much beneficial for me like.

Ryan Niemiller: For instance, it might have been hard to break through in comedy because of my disability, but now that I broken through there's nobody else, like me, I am incredibly unique so i'm not competing with other individuals who have this because this i'm one of one. When it comes to that so.

Nadine Vogel: [laughter]

Ryan Niemiller: that's that's very beneficial in that regard and then just sometimes just finding those little little things on the road that I can use it to my advantage because.

Ryan Niemiller: I don't think it's unfair to say that a lot of times disabilities have a big disadvantage with how people are treated how you know situations are set up for us, so there are certain situations that I that I milk it a little bit to get back.

Norma: Um, hmm.

Nadine Vogel:[laughter]

Ryan Niemiller: let's say if i'm flying.

Ryan Niemiller: And I accidentally checked in too late, so now, I have a really bad boarding position where i'm going to have to get a middle seat next to the bathroom or something like that.

Ryan Niemiller: When I get to the airport i'm like hey i'm gonna need a little bit of extra time getting on the.

Ryan Niemiller: plane, do you think I could get that pre board and they're like oh absolutely.

Ryan Niemiller: Mr Niemiller you know.

Ryan Niemiller: That there's enough negative things,that we have to deal with that, I think, occasionally getting those positives is it's something i'm not too proud and my wife.

Ryan Niemiller: Who does not have a disability, she she loves that I have that.

Ryan Niemiller: Power as well.

Ryan Niemiller: Especially, if we're running late.

Norma: Awesome. And that's so important.

Norma: I think you know take advantage of situation when we have the  opportunity to do so i'm know whenever i'm pushing my daughter, and her wheelchair, I have no problem getting to get on the plane first.

Norma: Because they let us on first.

Ryan Niemiller: Exactly and they way so i've had some people tell me that, like Oh well, that's not fair i'm like if I gave you the long list of things that that we deal with that aren't fair to us.

Nadine Vogel: Right.

Ryan Niemiller: Yeah yeah I always tell people, some people think it's unfair that I had I joke about my disability they say it's easy and i'm like well if you don't want me to tell jokes about but disability tell people to hire me for a real job without having any issues.

Ryan Niemiller: That you know, like like, let me just be judged on my merits when I tried to get employment, then i'll do whatever you need to I like I always tell people that I wish I we didn't have to talk about this.

Ryan Niemiller: You know, like like like you're all fantastic, but I wish that is a podcast like this didn't have to exist.

Ryan Niemiller: I wish it was just Oh, we have a disability, but we're still functioning members of society that can contribute like that's fine.

Ryan Niemiller: We don't have to talk about this it's.

Ryan Niemiller: Not a big deal but we're not there yet so.

Ryan Niemiller: yeah we're gonna have to deal with. me telling a few arm jokes. [laughter] you know.

Nadine Vogel: Well, you know Ryan that so true, I mean.

Nadine Vogel: So I run a global company called springboard and we work with corporations on mainstreaming people with disabilities as employees as candidates as customers and I always say that, like the best thing that can happen is we get put out of business because businesses finally get it.

Norma: Yes.

Ryan Niemiller: yeah I always tell people that and I even said this when I was you know i'm fortunate that like with what I do now, I don't have to work that nine to five anymore.

Ryan Niemiller: But I always tell.

Ryan Niemiller: People you would it would be to your benefit to hire people with disabilities, because.

Ryan Niemiller: Number one we are gonna work hard to prove ourselves we're going to prove that we are are capable and worthy because we just want that same respect so we're going to work hard for that respect.

Ryan Niemiller: And I touched on it a little bit before but too we're very innovative and we're very adaptable, you know, like there's.

Norma: Resourceful.

Ryan Niemiller: yeah exactly a lot like.

Ryan Niemiller: yeah there's a lot of things I can't do with my hand or I shouldn't be able to do.

Nadine Vogel: With the disability that I just figured out.

Ryan Niemiller: Because when you learn problem solving skills you're like Okay, you know there's been plenty of times, where i'm like all right, I am out here, I can't get my jeans back button i'm in a public restroom right now I can't go out there.

Ryan Niemiller: With my pants down what do I do, and then you figure it out like it makes you very resourceful I think.

Ryan Niemiller: You know, like obviously I I was always realistic to I wasn't trying to you know with my disability I wasn't trying to unload trucks or are things that we're going to be physically taxing that wasn't going to work, but like I can be a cashier.

Ryan Niemiller: You know I can do that, like this.

Ryan Niemiller: And i'm resource i'll figure it out, I people should just like look at look at alternate like things that you might not consider hiring people for because we'll we'll figure it out and we'll do we'll do a good job.

Norma: Absolutely.

Nadine Vogel: Absolutely well, let me, let me, let me, let me ask you.

Nadine Vogel: How to give one piece of advice, maybe two or three pieces.

Nadine Vogel: To individuals with disabilities.

Nadine Vogel: Whether, whether because they want to go into comedy or show business, or just life in general, what What would you say to that.

Ryan Niemiller: We touched on it a little bit earlier, but I think acknowledging your circumstances is one of the most important things that I had to learn.

Ryan Niemiller: And, and knowing what your reality is I always feel that us with disabilities, we have to be honest with ourselves, at the same time.

Ryan Niemiller: You have to you have to know what you're personally capable of then acknowledge what the world thinks you're capable of and kind of see where those meet in the middle.

Ryan Niemiller: And I will always push this i'll reiterate this again is just allowing yourself to fail and be sad sometimes and be upset the phrase, I like to use is it's okay to be mad it's not okay to stay mad I.

Nadine Vogel: Oh I like that.

Ryan Niemiller: I think that's very important because you'll be told by the outside world who doesn't understand how disabilities work.

Ryan Niemiller: Just be positive just be like Oh, you can do anything you can do anything, when I was five Oh, you can be anything you want Ryan well i'm not going to be a major league baseball pitcher Am I. Nope.

[Laughter]

Ryan Niemiller: That is not going to happen, but you know, so we can't do everything but there's going to be something we can do better than everybody else and it's.

Ryan Niemiller: Being okay with failing trying to find what that was you know I my lifelong dream is to be a pro wrestler I failed at that.

Ryan Niemiller: But it led me to theatre, which led me to comedy which I excel at so I had to be willing to be disappointed and fail and try things that might not work that might have been what you wanted to do and and understanding that.

Ryan Niemiller: Sometimes, what you want to do your disability might make impossible and that's Okay, because there's going to be something you're going to be great at.

Ryan Niemiller: You just have to be honest with yourself and and take the time to learn and be willing to fail on that journey, so you can be mad don't stay mad.

Norma:  And that applies to everybody.

Ryan Niemiller: Oh yeah yeah.

Nadine Vogel: I was just going to say that Norma.

Nadine Vogel: it's like.

Nadine Vogel: It is everybody could figure that one out my God, you can you know we can have world peace.

Ryan Niemiller: yeah yeah I just I always thought of as again that's why I never i'd never if i'm lucky enough to have kids you know i'm an uncle Now I will never do this to my nieces and nephews just I think it's very it can be very dangerous to tell a child that they can do anything they want to.

Nadine Vogel: Right.

Ryan Niemiller: Because that let that set you up I I was so disappointed in myself so often as a kid when people well meaning.

Ryan Niemiller: But people would say hey you can do anything, and then I try something, and my disability made me fail at it, so it made me feel like I was, I was like I screwed up.

Ryan Niemiller: Like I was useless like I didn't do it, so I think telling any kid you can do anything is unrealistic because you're going to set them up for disaster but telling them hey try things.

Ryan Niemiller: you're going to suck at a lot of them we're humans, we suck at most things, if you think about it it's like realistically if we got to try everything you could possibly do I would be terrible at almost all of them.

Ryan Niemiller: But there's gonna be a couple things that I am great at that's what you got to find just keep trying until you get that.

Norma: Fail forward.

Ryan Niemiller: Exactly.

Nadine Vogel: Well like Norma said.

Nadine Vogel: That's a message for everyone, I this this session just flew I cannot believe we're out of time.

Norma: Yes.

Nadine Vogel: We are.  Ryan, thank you, thank you and thank you for taking the time to speak with us for being so just darn funny.

Ryan Niemiller: Thank you.

Nadine Vogel: For for not only you know, informing our listeners, but really entertaining them at the same time, so we are grateful for that and Norma Thank you once again for being my fabulous co host.

Norma: Thank you.

Nadine Vogel: And we'll see everyone on another episode of disabled lives matter bye-bye everybody.

Ryan Niemiller: Thank you all. Take care.

Norma: Be blessed everyone.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S2-Ep16_Dona_Harris

Season 02, Episode 16
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Dona Harris

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel one of your host of disabled lives matter we are a podcast but actually we are more than a podcast we are a movement and, as always, I am joined by my fabulous co host norma stanley hey norma.

Norma: How are you.

Nadine Vogel: Good norma I know you and I have been waiting for this interview to talk with Dona Harris.

Nadine Vogel: Dona Harris has done a lot of things, but, most recently, she has founded a business and she's the CEO and executive director.

Nadine Vogel: of an organization called.

Nadine Vogel: Great day Family Connections hi Donna, how are you.

Dona Harris: i'm great nadine, how are you.

Nadine Vogel: I am good i'm even better because we're talking now today so, can you tell us a little bit about Great Day Family Connections.

Dona Harris: Well, I call it Great Day Family Connections, a family enrichment program and it took me a long time to even get to that.

Dona Harris: But basically it's because as families, I think we've lost the ability to communicate and we're taking we have taken the ability for parents to be those first teachers out of their hands and as well as stop them from.

Dona Harris: what's the word i'm looking for for taking leadership, you know there's so much history that that parents aren't sharing with the children anymore.

Dona Harris: And values and morals and how to communicate, you know how to take care of their own personal finances and things like that that we've left up to the school systems and we left up to community at large.

Dona Harris: And I call it, this bring it back to the household you know that time and I will sit around my grandmother's kitchen table with my mother and my cousins and we'd have these family discussions that you just don't see or hear about anymore.

Nadine Vogel: Right right well you know it's interesting that you say that because norma and I both are special needs moms.

Nadine Vogel: And you know we've had conversations that you know, especially when our girls were younger they're adults now, but when they were younger.

Nadine Vogel: How we would you know, in the school systems or to the doctors say we are the experts on our children right ready listen to us, so I really excited to hear about the organization so.

Nadine Vogel: You know, tell me a little bit more tell listeners a little bit more about what was behind it, what obviously this didn't just happen overnight you woke up one morning and said wow this is needed.

Nadine Vogel: Was that what was that genesis to get there .

Dona Harris: Oh it's an interesting journey.

Dona Harris: So I always remember my family time and, two, three things in my family and my life that I keep.

Dona Harris: is one that my mother used to get on the floor and play Jacks with us, I have a sister.

Dona Harris: And my mother told us how to play Jacks so I always remember sitting on the floor to playing jacks and my father taught us how to ride a bike and how to play cards and so playing cards, we were supposed to be learning numbers because we played poker we played.

[Laughter]

Dona Harris: Um you know you name it, there was a card game that we played it so we also played um and then I remember one time it was raining and every Memorial Day, we would go out to flushing meadow park i'm from New York so we'd go out to flushing meadow park.

Nadine Vogel: Me too and I used to go to flushing meadow park.

Dona Harris: All right and you're how you would ride the surrey bikes right.

Nadine Vogel: Yep, yep.

Dona Harris: And so. And we would always get the.

Dona Harris: surrey and my parents and it was just such a great time and my cousins would come well one particular time, it was pouring.

Dona Harris: And, of course, you know as a kid you're.

Dona Harris: disappointed. so my mother took a blanket and put it out on the living room floor and we had a picnic and she turned the shower on and put us in a bathing suit.

Dona Harris: And would run back and forth, you know, like we were in a sprinkler.

Dona Harris: And I just remember that and I just remember how much fun that was so over the years when I you know went to school and graduated and you know blah blah and.

Dona Harris: I remember, working with women who were substance abusers and I was working at grady memorial hospital here in Georgia and that's when it was called grady memorial hospital.

Dona Harris: But I had to work with women who were pregnant substance abusers and I worked with them postpartum so after they had their baby.

Dona Harris: And I worked out of the neonatal unit because i'm a social worker so i've worked out of the neonatal unit, and I did parenting programs.

Dona Harris: And now, in New York, I used to work with foster care and adoption, so the irony right, so here.

Dona Harris: I was in foster care and adoption, when I was in New York and i'm training foster parents and everybody, and now I moved to Georgia.

Dona Harris: And i'm working with women who have substance abusers and those are usually the ones that you're taking the babies from. right.

Dona Harris: But the goal was for them to get well enough that their babies can go home.

Nadine Vogel: right.

Dona Harris: And so that was a whole different mindset and then I realized I did a one of my trainings was on playing and I asked them I said, what are the things that you like to play when you were growing up, and they didn't.

Norma: They didn't have any memories.

Dona Harris: If you didn't know how if you don't know how to play how you're going to teach your children how to play.

Dona Harris: Right, and so we set a date and the next time I went and we played and we taught them how to jump double Dutch we play Jacks I bought in bat and balls I bought in all of my favorite things that I like to do when I was a kid.

Dona Harris: and as an adult but I did all of those things that when I realized that you have adults who don't know how to play.

Dona Harris: Then you have children who don't know how to play and I think what happens is that so many people think oh you just go out and play, but there's so many social skills involved in that.

Dona Harris: You know you learn turn taking you learn patience you learn teamwork, you know there's so many things involved in that kids miss and so fast forward I ended up working at the school for the Deaf the Atlanta area school for the Deaf.

Dona Harris: Loved where I love parents I love working with parents, because if you can change the way a parent perceives.

Dona Harris: Their household that's going to help that child, so I never really sat down and counsel with the kids because i'm like well about to put them back in the same environment what difference does it make.

Norma: Right.

Nadine Vogel: Right right.

Dona Harris: So I worked with the parents and realizing that over 90% of them don't communicate with their children or don't know how to communicate with their children or communicate with their children minimally.

Dona Harris: And because they haven't learned sign language or you know, some of them have would they would do home signs.

Dona Harris: Which is fine if that's your mode of communication, but how do you sit down and talk with your deaf child the same way, you talk with your hearing child and so now.

Nadine Vogel: Right.

Dona Harris:  you have to ask yourself. who's teaching.

Dona Harris: Your def child, you know your values and your morals and I would have parents called me up and say you know someone's on my family died, can you talk to them about death.

Nadine Vogel: Wow.

Dona Harris: Well my idea of death may be different from your idea death, you know or my idea of um when they should start dating may be different from your idea and so helping them have those conversations and I have a very dear friend.

Dona Harris: and her name is Kinga and she has organization called great day and we've been friends forever and she is a counselor.

Dona Harris: And we're used to always talk about how i'm like you do this Counseling, but you really need to have a family component and we talked about it for years, and so she says to me well, you need to open it up and i'm like you know what I am I am I am you know you put it off put it off.

Dona Harris: So she went for my business license and she named my program and so that's how it became great day family connections and.

Norma: You combined your your expertise and your passions.

Dona Harris: Right.

Norma: Nice.

Nadine Vogel: yeah that's that's great I mean the whole the whole concept of language, accessibility and communication, I mean you're right, you know when you have someone else communicate on your behalf, how do you know what they're conveying.

Dona Harris: Right.

Nadine Vogel: And how do you know that it's it's what your bel. like you said, your belief system your spirituality your everything.

Dona Harris: Right.

Nadine Vogel: I mean norma I don't know about you, but I can't imagine someone doing that, with my child.

Norma: Right. exactly.

Norma: And you know just observing.

Norma: You know, sometimes when their children around other people you know, there may be things that you say that they've conveyed that wouldn't necessarily be something that you would do it, you wouldn't do it that way.

Norma: No, no, I think it's important to for the kids understand where the hearing impaired or not.

Norma: How they can communicate with their parents and get what they need to get.

Dona Harris: Right.

Norma: Even if even if they're non verbals.

Dona Harris: Right, and I think one of the problems that happened with parents is they don't have that opportunity to grieve.

Nadine Vogel: Right right.

Dona Harris: um and that's another thing that I address in my program is having that opportunity to grieve to know that no your child is different, but different, is not, different is not bad because we're all different.

Dona Harris: Right.

Norma: yes.

Dona Harris: We all and and I tend to not use the word disability.

Dona Harris: That much because you know, as I say, we're all disabled in something.

Dona Harris: You know.

Nadine Vogel: right, right.

Dona Harris: so whereas you may say, well you're hearing and you can talk, but I can't sign, I can but i'm just saying you know you know.

Dona Harris: and that's a skill that's a learned skill and so to look at what the child brings to the table and I don't just focus on deaf children because they have siblings and I think is too often that we and i'm gonna use the words segregate.

Nadine Vogel: Our families.

Dona Harris: You know, deaf child goes here in child goes here, and you know.

Dona Harris: But no, this is about coming together and learning together and learning your history learning about literacy, whether it's books or financial literacy learning.

Dona Harris: about your health and health history things that we don't we no longer have conversations about so that's what the program and this program is called legacy and that's what is, you know that we do building our legacies and see where are legacies are going to go.

Nadine Vogel: Well you know what's interesting Dona is my older daughter when she was a baby she was unable to communicate verbally.

Nadine Vogel: And she's not deaf and doesn't have hearing loss, but as a result of her disability had trouble with that.

Nadine Vogel: And so they taught her signs basic signs that she could do, and they taught us, the signs because we couldn't communicate she was you could see how frustrated she was getting.

Dona Harris: right.

Nadine Vogel: But then what happened was she was learning the signs quicker than we were.

Dona Harris: yes, yes.

Nadine Vogel: Then we had frustration all over again, because now she was communicating but in a way we couldn't completely always understand.

Nadine Vogel: So it's an interesting balance that you know you talk about in terms of really working with the parents, I think that that's that's so important, and you actually have a program I believe called hands up.

Dona Harris: Yes, yes So yes, I do see sign language classes and I have various levels of sign language classes and, recently, someone had asked me about doing one, for children so i'm thinking about doing like a summer camp.

Nadine Vogel: wow.

Dona Harris: And I think it's important, especially when you have siblings that the siblings learn how to how to communicate.

Nadine Vogel: yes, yes absolutely.

Dona Harris: Well, I don't want siblings to become the interpreter for the child I don't think that's appropriate.

Dona Harris: But I do definitely want parents to learn how to communicate and I want people in the Community, because the more people that communicate.

Dona Harris: Even if you just learn basic it open so much door so many more doorways for that child, you know, to know that hey I have a sensibility and it's okay.

Dona Harris: You know that people still want me to be engaged because there's so many really great programs out there, that are not available to children who are deaf or hard of hearing.

Norma:  Yes.

Nadine Vogel: You know what's interesting, intersting that you bring that up but norma I know you have some questions.

Nadine Vogel: We have to run quickly to commercial break as soon as we come back why don't norma I'll turn it back over to you and you just bring us back and start with some questions so Dona hang on to our listeners, we will be right back with Dona Harris stay tuned.

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

[COMMERCIAL]
Are you familiar with Springboard Consulting.  If you are, you are certainly aware of our annual Disability Matters Awards. This year, 2022, we will live-stream our Europe awards on July 26 & 27, that event is being hosted by Barilla.  And later this year, our Asia-Pacific awards are being live-streamed on November 9 & 10, and that event is being sponsored by Manulife.  Don't miss out! For more information visit www.consultspringboard.com.

Voiceover:  And now back to our show.

Nadine Vogel: Hello everyone, this is nadine vogel and joined by my co host norma stanley and we are interviewing Dona Harris today and talking about her amazing organization, the great day family connections norma i'm going to turn it over to you.

Norma: Well, I just had a couple of questions because i'm and I think because of.

Norma: Dona at an event that we were together that she kind of enlightened me and there was a there was a couple of things that I wanted to share about that.

Norma: there's a difference between American sign language and typical sign language, could you explain it and then the question is, you know, have you had an opportunity to interact with the Sign1News organization and it's something that you might.

Norma: be interested in because they actually communicate the news via for deaf deaf and hard of hearing people and they have the interpreters as well as the signers and all of that and it's connected to CNN and that's something that you've ever looked into.

Dona Harris: Okay, so I may answer your first question. Okay.

Dona Harris: So so American sign language is different from what I teach okay so it's basically an asl it has its own format and its own syntax.

Dona Harris: I teach what what.

Dona Harris: It has various names, but one of them is pigeon okay so basically or Conceptually Accurate Signed English is more typical and I do that because I feel it's easier for families to learn.

Norma: um hmm.

Nadine Vogel: Right.

Dona Harris: than to learn asl. so you can't talk and sign if you're doing an asl and it's very difficult to write you really it's not a written language, it is a signed language.

Dona Harris: I teach C-A-S-E because.

Dona Harris: I can talk and sign at the same time, eventhough you shouldn't but it gives it helps children to learn sentence structure.

Dona Harris: And I think that's important that they learn how to write well.

Dona Harris: And how to put things in a format, but it's called Conceptually. Accurate Signed English because.

Dona Harris: If I was going to sign my nose is running, it will be different, the way I was signed it in asl vs I was signing because such in in what they will call S-E-E. Signing Exact English because in Signing Exactt English to sign for run is like a person running and our nose runs more like a faucet.

[Laughter.]

Dona Harris: Right.  Well at least conceptually more than it does as a person running and so.

Dona Harris: that's why I say I teach Conceptually Accuracy Signed English because I want families to feel more comfortable instead of saying okay now did I put this in the right order is this, you know just think about whether or not they can visualize what you're saying.

Norma. Right.

Dona Harris: That's a lot easier and so that's what I teach.

Dona Harris: I do not proclaim that I teach asl because I don't okay.

Dona Harris: To answer your other question.

Dona Harris: I know of Sign1News, and when I was working at the school, I had the you know the opportunity to meet them when they were just beginning.

Dona Harris: I have not had an opportunity to speak with them, or have any type of interchange with them, but I definitely promote it and I definitely encourage it, you know because I think it's wonderful that there is that service that's out there, you know and for anybody who's interested in i'm sorry.

Nadine Vogel: No. Go ahead.

Dona Harris: No, I was just gonna say, and I think it's great because it not only did they give you information on what's going on in the deaf Community whatever, but for the Deaf Community to be able to know what's going on in the Community in their own language.

Dona Harris: You know.

Nadine Vogel: And I, and I want to take that a step.

Nadine Vogel: Further, though, going back to what you said earlier Dona it's not even it's even bigger than that it's then those siblings.

Nadine Vogel: and family members.

Nadine Vogel: Right, who now can watch the news and engage participate with their siblings who are deaf or hard of hearing or have hearing loss.

Nadine Vogel: and actually do so in a very inclusive way, I also think that by doing that and doing what you're doing it, it does educate it educates the general public about inclusive.

Nadine Vogel: And, and we need more of that we need so much more of that in so many ways.

Nadine Vogel: Because what i've learned and norma, I think you and I have talked about this is that you know when the child is excluded when they're in school and they're excluded from activities and other things, the parents tend to be excluded as well.

Dona Harris: that's true.

Norma: yes. and we don't like that.

Nadine Vogel: No, no, no, no, not at all and so.

Nadine Vogel: What you're doing is is bringing people together in a way that goes beyond language right it goes it goes beyond it's really more about inclusive engagement and community, and I think that's really what you're trying to get out if I if i'm hearing correctly.

Dona Harris: No you're absolutely right and and you know you you touched on, because you said you're excluding the Community, but you exclude it in your own family.

Dona Harris: You know.

Nadine Vogel: Yes yes.

Dona Harris: You have a child who has a different ability, the family excludes you because they're like.

Dona Harris: Okay, what do I do and I don't know if I could take them with me or they may not take the other sibling or if the child is deaf, then you have one parent usually who learns how to sign, and so much the other parent.

Dona Harris: But what is that teaching that child, you know how do they evaluate how they feel valued, you know.

Nadine Vogel: right or not.

Dona Harris: Right and I have seen so many young children as they grow up because the school started at age three and it can stay until age 22 and i've had conversations once they hit teenagers, tells you how long I've worked there,  teenagers and they didn't want to be engaged with the family anymore.

Norma: Wow.

Dona Harris: And then the family was upset but what pattern, did you set and not to say that you're not loving, not to say that you're not providing for them, or anything like that, but there is a picture in the deaf community that they'll use a lot and it's called Deaf Pet.

Dona Harris: So it's like a picture of a child sitting on the floor looking at these adults.

Dona Harris: Having these conversations back and forth, you know, and I was saying, and not be trying to be disrespectful in any way, but if I call my cat my cat will come. and if I tell my cat to stop doing something they'll stop doing something, but can I sit down, have a meaningful conversation.

Norma: Right.

Dona Harris: You know and that's what you want, you want to be able to have meaningful conversations with your children, no matter what their ability is you know you want to be able to do that.

Dona Harris: And deafness is the one disability that you technically have to learn another language.

Dona Harris: Now of course science has bought about cochlear implants and things like that, then you know give abilities and then you have some.

Dona Harris: parents who teach the children to be oral which is cool I don't say you have to use to have to do, that the only thing I have, I say you have to have a relationship with your child.

Dona Harris: You know you have to form that bond that they feel that they're valued and loved and treasured that they're just as important as anybody else in the household.

Nadine Vogel: Right and Dona i'm just gonna go back here, and you said about meaningful conversation with your cat if you figured that one out we can have a whole other interview.

[Laughter.]

Nadine Vogel: I just wanted to put that out there okay.

Dona Harris: But you think about it. I mean I don't know how old is your daughter is.

Dona Harris: But I think I look back at my life with my parents, we had meaningful conversations until I became an adult.

Dona Harris: But until I moved out I didn't realize.

Dona Harris: That all the things that my parents did for me wasn't the norm right, you know it wasn't the norm, and so, then I can remember calling my mother up when I was working at grady and saying oh I just need to let you know how much I really value all the things you and dad did for us.

Nadine Vogel: Right.

Dona Harris: You know, because when you hear the stories of other people.

Norma: Oh for sure.

Dona Harris: You know, and the things that they goes through, you know, I would have used drugs to you know.

Nadine Vogel: Right.

[Laughter.]

Dona Harris: But you don't get that appreciation until after you've removed yourself and gone through some other you know life experience.

Nadine Vogel: Right right. no absolutely and you know and another thing you said too I want to come back to about you know, sign language truly being another language.

Nadine Vogel: It frustrates the dickens out of me and norma you and I have talked about this you know grades you know K-12 when it when they're offering Spanish and Italian and German as a another language or even in many universities, why aren't they offering sign language.

Dona Harris: Well now, they are.

Dona Harris: Now they are so now.

Nadine Vogel: Is it standard.

Dona Harris: Yes, yes, yes, now.

Dona Harris: Now.

Dona Harris: I won't say that all the schools offer it i'm not going to say that.

Dona Harris: But it is viewed as a second as a foreign language.

Nadine Vogel:  Good.

Norma: Wow.

Dona Harris: Georgia state offers it I think Valdosta offers it and it may be, you know some other schools but yeah, it is viewed as a second language, yes.

Nadine Vogel: Well, it is about time.

Norma.  It is.

Nadine Vogel: It is really about time well, this has been wonderful i'm.

Nadine Vogel: You know it's it's interesting to me when I hear what you know the things that your organization does, let me ask you this, how do families know about you how did they come to learn about you, how can we have the help other families know about you talk just a little bit about that.

Dona Harris: Okay, so it's like I said, this has been a journey.

[Laughter.]

Nadine Vogel: It always is.

Dona Harris: So yeah so my organization, I have finally found my place, so to speak.

Dona Harris: Okay, and so the legacy program will start in June.

Dona Harris: And we're going to start off.

Dona Harris: Basically, with talks just lunchtime talks that I called home talk and it's called Engage N Eat, and so we will start that on in June, and I think I have it for Thursday afternoon in June, because, like, I am a care provider, and so I had.

Dona Harris: A work around scheduling and things like that, so that i'm not impacting you know my father in any kind of way.

Dona Harris: right and then.

Dona Harris: The legacy program i'm hoping that will start that in the fall and that will be a 10 week program with activities.

Dona Harris: Based program so basically i've been doing word of mouth i've had you know i've worked with a lot of people and so i've done word of mouth and friends and things like that, as my program builds and then I have an event that i've done this would be my fourth year doing it's called Silent Town.

Dona Harris: And I used to have it in March and I moved it to November, because November is national communication month.

Dona Harris: And people would think and I send it up just like have you a Community so even when we did it on zoom for the first year due to Covid. we set it up as a Community, and so you have stores, we have restaurants, we had a post office everything you can find in a community, the key to it is you can't talk.

Dona Harris: So it didn't matter if you knew sign language, because you couldn't sign because supposedly no one else should know sign language so basically is to figure out how do you communicate to somebody else, how do you get to know. Other people.

Nadine Vogel: Nice.

Dona Harris: How do you find out know what their services are and people had a blast the biggest thing was getting vendors because i'm like well how am I going to talk, I can talk well you know.

Nadine Vogel: yeah.

Dona Harris: You know you're going to write. you'll put it in the chat when we had to go to zoom but that's that's my biggest event is Silent Town.

Nadine Vogel: So Dona just tell us, is there a website, or some way to get in touch with you.

Dona Harris: My website is greatdayfamilyconnections.org or you can feel free to email me at dona.greatdayconnections@gmail.com.

Dona Harris: um like I said we're we're changing some things we changing some of our logos were changing some of the activities we had on the website So I had to condense what I was doing too much.

Dona Harris: um what does a a mater of everything no how's that go.

Nadine Vogel: Oh yeah.

Dona Harris: master of none.

Nadine Vogel: yeah exactly yeah.

Dona Harris: I can remember how exactly it goes, but yeah. 

Dona Harris: You can be all over the place, but not doing any one thing well.

Dona Harris: And I decided it is important for me to do less and do it.

Dona Harris: Well, so that what we're going to do.

Nadine Vogel: Well, it sounds like you're doing a lot a lot and doing it all well, so thank you so much for. all you do.

Dona Harris.  Thanks so much for this opportunity.

Nadine Vogel: And your organization, unfortunately, we are out of time, so I just wanted to have our listeners know that again this was Dona Harris and Great Day Family Connections, we look forward to talking with you again soon and norma once again another. great show.  another great show.

Norma: Yes, it was.

Nadine Vogel:  So for our listeners, we will see you on another episode of disabled lives matter see you soon.

Dona Harris:  Thank you.

Norma: Be blessed everybody.

Nadine Vogel: bye bye everybody.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

 

S2-Ep15_Isaac_Zablocki

Season 02, Episode 15
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Isaac Zablocki

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel coming to you from disabled lives matters, this is more than just a podcast, this is a movement, and I am joined by the fabulous norma Stanley my co host a normal.

Norma: Hi, hey everybody.

Nadine Vogel: I am really excited today norma because we're going to be interviewing Isaac Zablocki.

Norma: Yes.

Nadine Vogel: Isaac is the director of the Israel film Center at JCC in Manhattan and there's just so much here to talk about so Isaac welcome to the show.

Isaac Zablocki: Thank you so much, thanks for having me.

Nadine Vogel: Yeah absolutely, so I know that you went to film school, this is, you know your passion your avocation your profession to tell us a little bit about let's start with the work that you do at the Israel film Center.

Isaac Zablocki: Well, I think all of my work really connects ah, I believe that film is a tool for is a form of education and a tool for change, I think.

Isaac Zablocki: When people watch films any kind of movie I mean even truthfully like mainstream movies too Hollywood blockbusters they change you as a person and that's what good art does and.

Isaac Zablocki: And that's a very powerful and a very important tool to have, I think, film in general is is really one of the far reaching and sometimes easily accessible for some in some ways.

Isaac Zablocki: kind of medium and you know a lot of people find it really easy to watch movies, most people like movies, and you know it's kind of like ice cream in my mind.

[Laughter.]

Nadine Vogel: I like that.

Isaac Zablocki: Yeah and then and and so, so all of the work that we try to do here at at the Marlene Myerson JCC Manhattan, which is the home to all of our film festivals.

Isaac Zablocki: is to see film as a tool for social change as a tool for change in general as an impactor as not not just entertainment sure entertainment's great I don't belittle entertainment I.

Isaac Zablocki: Think um let's think about how this really deepens our communities experience and and that connects really I think everything that we try to do and how we approach film.

Norma: awesome.

Nadine Vogel: Well, I think that's so important, because if we if we look at film, as you say, as as a way to change or influence.

Nadine Vogel: Not just entertain, but to do both, then I think we have to be extremely extremely mindful, the studios needs to be extremely mindful about what gets put out there, would you agree.

Isaac Zablocki: With great power comes great responsibility is that what they said about spider man or.

Nadine Vogel: Exactly.

Isaac Zablocki: Yeah.

Nadine Vogel: Exactly.

Isaac Zablocki: I think, yes I think there's there's the.

Isaac Zablocki: Art house movement that might and general movement that might need to try to find ways to balance out what's going on in Hollywood and.

Isaac Zablocki: I do believe that Hollywood is changing for the better, but I think yeah I think every filmmaker every producer every distributor needs to think about like How is this film making our world a better place.

Norma: Yeah.

Nadine Vogel: And, and I would assume when you say that you mean through the story, but then also through the actors and actresses that are portraying the characters.

Isaac Zablocki: What are the messages we're putting out there, what are we showing our world, how are we showing our world, is it coming you know, are we showing our world as a diverse place or as a as says the opposite, are we showing.

Isaac Zablocki: Our world with true authenticity or or are we, you know kind of phoning it in.

Isaac Zablocki: And, and so much more like what messages, how are we, you know who's the cool kid in this movie who's the bad kid in this movie and.

Isaac Zablocki: What is that saying to to our how our parents reacting how our parents behaving I mean life does not does mimic art in the case of.

Isaac Zablocki: movies for sure.

Nadine Vogel: Right. And what's the conversation we're having as a result.

Isaac Zablocki: Right right, how are we taking that further, how are we taking this deeper or are we just saying, are we sitting there and applauding and saying great that that we saw this, or are we actually taking action are we actually using this you know I think movie should be a starting point for a conversation.

Isaac Zablocki: Are we having are we taking it further and having those.

Isaac Zablocki: Discussions and sometimes I think movies can take us into into areas that we're not so easy to to approach.

Isaac Zablocki: One one program that we've been doing here as part of one of our programs is talking about death, you know that's a really hard topic to talk about.

Norma Stanley:  It is.

Isaac Zablocki: And let's show some movies that approach that that allow you to begin to have the conversation, and you know take us out of our comfort zones, a little bit and talk about you know some things that are that are really real. And right.

Nadine Vogel: No. Absolutely.

Nadine Vogel: No death is real, what do they say death and taxes right.

Isaac Zablocki: No good tax movies that's the problem. 

Nadine Vogel:  Yeah.

[Laughter.]

Nadine Vogel: Exactly.

Norma: Well, we're actually getting closer to movies, like Purge, I mean it's getting really scary out here.

Norma: Where art is imitating life or life is imitating art.

Isaac Zablocki: yeah.

Nadine Vogel:  That's true norma.

Nadine Vogel: Now Isaac. I think you spent time at miramax films. 

Norma: When you were at miramax did you find, as you were working in that space um an opportunity to.

Norma: to incorporate the disability community and is that something that would that interest came from is that is that where you um originated the opportunities to say how can we incorporate more people with disabilities in film.

Isaac Zablocki: I like to joke that everything I do today today is thanks to miramax because when I was there I learned exactly what I didn't want to do and.

Isaac Zablocki: want to be, and where I didn't want to be and it's it's it's like you know till this day now I don't know how many years later 18 years later.

Isaac Zablocki: I am still completely motivated by this notion, and I didn't even know about half about much of it seems that that all the stuff that was going on at miramax that.

Isaac Zablocki: is now kind of public you know I knew it was a bad place and I knew that wasn't necessarily the way I wanted to spend my life in working film and doing so, I wanted to do my work to have more meaning.

Isaac Zablocki: And, and I wanted to work in an environment that was.

Isaac Zablocki: Safe and accepting and.

Isaac Zablocki: kind and and.

Isaac Zablocki: brought out the right messages now.

Isaac Zablocki: I mean, I do believe that miramax is.

Isaac Zablocki: has brought some amazing films to the public and and i'm glad they they managed to out of all of that kind of.

Isaac Zablocki: Unfortunate environment they managed to actually do some good to this world both artistically I think there's great films out there and message wise great films out there i'm not criticizing the movies, they made.

Isaac Zablocki: But i'm actually even surprised that out of such a volatile environment that that that real goodness can come.

Isaac Zablocki: And and i'm grateful that you know I did not think about my work with ReelAbilities or disability work when I was there, it actually it was more like you know, I have to give my life more meaning and and find another way to approach film that's healthier that's.

Norma: So where did this impetus come from, for what you and when you started in incorporating and looking for opportunities to showcase the people disabilities and their lives and Community through film where did the impetus come from.

Isaac Zablocki: So I have a personal connection to disability, but, honestly didn't come from that it really came from the Cinematic side of things and seeing that if my goal is to.

Isaac Zablocki: To use film as a way to elevate voices that aren't heard enough possibly hardly heard at all, and then, then you know there's a lot of film programs, a lot of film festivals out there, we don't just need another film festival.

Isaac Zablocki: I would, I was feeling that there was a great need for more films on disability to have a platform to be celebrated to have those voices really get out there.

Isaac Zablocki: And it's been a real uphill battle for ReelAbilities, but then you look at where we are now and how much has changed, and what went on, with CODA this year, at the Oscars and.

Norma: Yes.

Isaac Zablocki: And you see that you know, a revolution is really happening and and and it's kind of like it's amazing to look back cuz cuz you know when we started ReelAbilities 15 years ago.

Isaac Zablocki: There was none of this going on there, there was you know only inappropriate representations in the mainstream but we're seeing a huge difference in in the submissions we get in the quality of the films and and really in the messaging too.

Norma: That's awesome I do believe we have to take a quick break and come right back, so we will come right back with disabled lives matter, and you guys stay tuned while we continue to speak with Mr Isaac Zablocki stay tuned.

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

[COMMERCIAL]
Are you familiar with Springboard Consulting.  If you are, you are certainly aware of our annual Disability Matters Awards. This year, 2022, we will live-stream our Europe awards on July 26 & 27, that event is being hosted by Barilla.  And later this year, our Asia-Pacific awards are being live-streamed on November 9 & 10, and that event is being sponsored by Manulife.  Don't miss out! For more information visit www.consultspringboard.com.

Voiceover:  And now back to our show.

 

Norma: And we are back with disabled lives matter and we are speaking with Mr Isaac Zablocki and he is.

Norma: Are you, what are the we were talking about ReelAbilities and why you thought it was an important you know important venture into an effort to go ahead and create these opportunities to tell the stories and filmmakers who aren't you know aren't embracing.

Norma: The disability community and all the all that's out there to be told, and so you said, but you also had a personal connection, what is, that personal connection.

Norma: To the to the Community.

Isaac Zablocki: I mean there's so much, but I mean I personally have and this is something I wouldn't have said 15 years ago and kind of like you know kept it to myself, because I thought I would never get a job if people knew that I had a learning disability.

Isaac Zablocki: my brother is physically disabled and my cousin's on the spectrum and it's just played a big part of my life from day one.

Isaac Zablocki: And and and kind of like I I was lucky enough to grow up in an inclusive world and and I recognize that not everybody is not everybody sees people with disabilities and I think.

Isaac Zablocki: that's part of what ReelAbilities tries to do is given opportunity for people with disabilities to.

Isaac Zablocki: to actually be seen and through movies it's a great way to do it because I, you know I gave my ice cream theory before, because you know you're coming to a movie.

Isaac Zablocki: and hopefully you'll you'll you'll come for the entertainment and stay for more and if you're from the disability community.

Isaac Zablocki: And you know have grown up in a diverse in the same company, the same kind of diversity that I grew up with then then finally there's a place for you to actually see your world see the world the way you see it on the screen.

Norma: Absolutely.

Isaac Zablocki: And not just not just some in the slanted way and I think I think.

Isaac Zablocki: Hollywood has hurt a lot I think Hollywood Hollywood in disability does not mesh perfectly it could there's no reason for it not to I think Hollywood.

Isaac Zablocki: Has has you know set up the a standard of what we see on the screen, that is not necessarily the reality and and keeps people in the reality.

Isaac Zablocki: In some ways out of reality.

Norma: Absolutely and that's one the reasons why nadine, and I do disabled lives matter to generate the the opportunity to share.

Norma: All the amazing stories that are out here that they tend not to hear about we're both also mothers of children.

Norma: with disabilities, so we understand that there's so much to be told, then there's so many there's so much there's just so much.

Norma: there's so much that we want to make sure we fill in the gap in our own little way.

Norma: Through the work that we do and as as parents and as advocates, and so we get excited when we get to meet people like yourself, who are taking their craft and making sure that the Community is represented in a way that they need to be represented, so we thank you for that so.

Isaac Zablocki: It's a pleasure.

Norma: Go ahead.

Isaac Zablocki: No. it's a pleasure, and thank you for your work it's it's you know, we need to have as many as many people in this in this campaign as possible.

Norma: Absolutely so what are some of your favorite moments with ReelAbilities and some of the projects and artists that you were able to discover through the process of the film festival.

Isaac Zablocki: Oh that's an unfair question on so many levels, first of all, there are so many great moments every year, every year, I listen i've run many film festivals annually, as mentioned before, and ReelAbilities don't tell the others, but ReelAbilities is by far i'll say the most impactful.

Isaac Zablocki: And every year, I am like blown away by the responses by the quality of the films by the the.

Isaac Zablocki: By the just events that happened there the conversations and and the reactions of the audiences it's really it's mind blowing and some of it is from.

Isaac Zablocki: I mean, I was, I was looking through an old email, the other day, and I saw an email that I wrote about about a about one year how our closing night because we attracted a we attract the disability audience, we had a dance party afterwards and inclusive dance party.

Norma: How cool.

Isaac Zablocki: A mother came over to me asking me for pictures of her daughter dancing for the first time in public.

Norma: Wow.

Nadine Vogel: Oh my gosh.

Isaac Zablocki: We provided a platform for that, and this goes on every year at the at the festival there's there there's audiences that are connecting for the first time audiences, who are veterans.

Isaac Zablocki: Who are connecting for the hundredth time and just really feeling that this is not like anywhere else.

Isaac Zablocki: We try every year to create a really inclusive environment, and that makes me really proud every year, and every year we have to learn, we are we're the most accessible film festival i'd say in New York for sure and.

Isaac Zablocki: And yet we are learning constantly and we are finding ways to make people feel more welcome.

Isaac Zablocki: This pandemic taught us that we taught we learned something like we used to run in over 40 locations throughout New York to be more accessible, you know people shouldn't just have to come into.

Isaac Zablocki: midtown Manhattan in order to see see a disability, film, we should go to them too and then, when we had our first virtual film festival we suddenly we're getting all these emails that that this that this is the first time they could attend ReelAbilities they've wanted to over the years.

Norma: Wow.

Isaac Zablocki: And audience members couldn't because of their disability, now that we're back in person we're keeping that.

Norma: Absolutely. 

Isaac Zablocki: We're keeping the virtual right. And we continue to hear from people their gratitude for, for you know, making sure that people can access, however, they can.

Nadine Vogel: Isaac this is.

Nadine Vogel: Nadine i'm hoping y'all can hear me.

Norma: Yes.  

Nadine Vogel: I had an amazing opportunity to attend ReelAbilities film festival in Manhattan number of years ago and it was interesting because.

Nadine Vogel: My company springboard we've had an opportunity to work with different film festivals, and by far by far you lead the way from the standpoint of accessibility.

Nadine Vogel: And really just every aspect of making sure everyone is comfortable, obviously including people with disabilities, one question that I had is.

Nadine Vogel: Do you feel being that you're affiliated with the JCC that there's anything from the Jewish community that impacts this in a slightly different way.

Isaac Zablocki: that's a big question, I mean I mean we constantly debate like you know.

Isaac Zablocki: The relationship there, I mean the the leadership of the JCC has made ReelAbilities what it is, and that's really been really great, this is not a Jewish film festival at all.

Isaac Zablocki: This is a be i'm happy to connect it to Jewish values, I think all the religion religions out there, hopefully have positive reviews of inclusion and and and making sure you know, I mean we're we were all made in the image of God and seeing the humanity and everyone.

Isaac Zablocki: But the truth is, this is about a Community effort and the JCC here in Manhattan has has really put an emphasis on disability inclusion, as well as other kinds of inclusion, but but i'm here to talk about the disability element.

Isaac Zablocki: And they and that's what allowed ReelAbilities to exist in place like this and they put the effort in and allow us to to to grow and expand even way beyond the JCC I mean ReelAbilities is in cities across the country and.

Nadine Vogel: That's right.

Isaac Zablocki: And it's it's really a much larger program than just a Community Center in Manhattan and.

Nadine Vogel: Right.

Isaac Zablocki: And that's something, because I think also came from, not every institution going to allow that to happen, but.

Nadine Vogel: Exactly.

Isaac Zablocki: the JCC really saw this saw this as going beyond just like you know its personal goals to seeing this as a much broader important topic to take beyond.

Nadine Vogel: yeah so so i'm curious if we were sitting down having the same conversation five years from now, maybe, maybe again 10 years from now, how would the conversation be different. 

Isaac Zablocki: Well.

Nadine Vogel: Or would it be. 

Isaac Zablocki: Well. I would imagine we would be where we are 5 or 10 years ago, as far as the quality and the mix, I mean I mean so much has changed the movement has changed the language has changed.

Isaac Zablocki: The concepts of inclusion, I have changed in the last two years in many, many ways and has become kind of at the forefront.

Isaac Zablocki: of a lot of people's agendas.

Isaac Zablocki: In five to 10 years from now, I mean i'm always saying I want ReelAbilities to become obsolete.

Isaac Zablocki: That you know disability and every other dis, and every other minority is fully represented appropriately and authentically.

Isaac Zablocki: In every field that you will not need a festival like this, the truth is, when I think about it is that maybe maybe they'll still be a place that needs to bring.

Isaac Zablocki: These films together and highlight them and kind of like like create a space for the disability Community maybe maybe we will be reaching the mainstream fully, but although i'm sure there.

Nadine Vogel: [Snicker.]

Isaac Zablocki: Will be work that needs to be done, but but also have a space, just to celebrate and to recognize.

Isaac Zablocki: A unique community that kind of most of its members don't even know that they're a part of it or don't even like to recognize they are part of it.

Nadine Vogel: Right.

Isaac Zablocki: So, so I think I think they'll still do that place from there, I didn't want to want to emphasize like one of the changes that's that's happened that I think is an important emphasis to I think there's a lot more inclusion, the question is, is the inclusion of quality and is it responsible.

Nadine Vogel: Right.

Isaac Zablocki: Those are things. That and and you know, anyone can decide what quality is there, these are subjective terms of quality and and responsible and responsible.

Isaac Zablocki: But, from my perspective, we want that's what we try to do at ReelAbilities and we're constantly evolving with that movies, that we showed at the very beginning of ReelAbilities we might not show now.

Nadine Vogel: Got it.

Isaac Zablocki: Because of our changing and evolving approach.

Isaac Zablocki: 10 years from now, some of these films, we might say, you know, this is, this is not how we. want to.

Isaac Zablocki: Present disability.

Nadine Vogel: Right right. so i'm wondering, as you talk about quality and responsibility How does that seep into I mean, I think it should be how doesn't seep into the film schools and and what's being taught today.

Isaac Zablocki: yeah yeah I mean that's that's where it needs to start filmmakers need to take this into account, need to be aware of.

Isaac Zablocki: First of all, authentic representation, you know, everybody a lot of people grew up on films that use disability and kind of a.

Isaac Zablocki: i'd say a way to to kind of like you know get attention and not necessarily to tell a real story of what of what disability looks like and and how it should be portrayed.

Isaac Zablocki: I think I think film students should be taking classes in this I go and some film schools throughout the year and talk about.

Isaac Zablocki: About especially they want to know about accessibility, how to make your films accessible.

Nadine Vogel: Right right.

Isaac Zablocki: So yeah you're making a your film and you're learning about how to write up a budget and and you have to know that that that just like you're putting money aside for color correction. 

Nadine Vogel: Um hmm. 

Isaac Zablocki: And for sound, put money aside for captions and audio description, so when you submitted think about this when you submit it to your first film festival, the first time, your film is going to be shown right now.

Isaac Zablocki: 99% of the films being submitted do not have any of that accessibility, which means the selection committee can't include somebody who's necessarily deaf or has.

Nadine Vogel: Right.

Isaac Zablocki: So these films aren't even being selected by the Community itself, which is something that we we try to do.

Isaac Zablocki: Within our selection process so, so this is something that really needs to change from the very beginning, people need to start start talking about how they make their films accessible.

Nadine Vogel: I think that that's so critical, because when you know I have opportunities to work with the studios you know, by the time it's at the studio this should already be worked out.

Norma. Absolutely.

Nadine Vogel: But then the studios are challenged right norma you know we hear from the studios about their challenge they don't know what to do and it just delays production, I mean it complicates the whole in an already complicated process.

Isaac Zablocki: there's a long yes there's something I want 10 year 5-10 years from now, I want all the films that come to ReelAbilities to already be captioned and audio described and fully accessible because right. now we're seeing the.

Isaac Zablocki: Numbers grow from year to year. it went from one. To three.

Isaac Zablocki: I want to be at the 10-20 mark in in five years.

Nadine Vogel: Got it.

Isaac Zablocki: I hope to see more of that I want people to actually use them, you know we we create.

Isaac Zablocki: We create captions for all of our films and then I see them going to film festivals across America and around the world and not using the captions because I mean that, even if a director asks, can you share it with captions film festivals will say no, no, no, we don't do that that's.

Nadine Vogel: Right.

Norma: Wow.

Nadine Vogel: And I know. I know.

Isaac Zablocki: And that's, of course, something that can be argued, you know you're you know you're showing foreign films with subtitles why can't you. show captions.

Norma: Absolutely. Exactly.

Norma: it's amazing.

Nadine Vogel: Exactly exactly well on that note, I cannot believe this, but we are out of time, Isaac it has been a pleasure, a.

Nadine Vogel: pleasure speaking with you today, I personally love ReelAbilities.

Norma. Me too.

Nadine Vogel: I'll get back in touch with.

Nadine Vogel: You because I have some ideas on how to promote it even further and i'm really excited about this so again, thank you for taking the time.

Isaac Zablocki: Thank you for doing this and, and please do do I would love to hear more on how this can be promoted.

Norma: Awesome.

Norma: Yeah.  I go to the one in Atlanta all the time, so I love it, so thank you so. Much. For all you do.

Isaac Zablocki: Thank you.

Nadine Vogel: Well norma, as always, thank you for being my amazing co host.

Norma: [Laughter.] And thank you for the opportunity.

Nadine Vogel: And to all our listeners.

Nadine Vogel: We look forward to seeing you on another episode of disabled lives matter they really do we are more than just a podcast we are movement, bye bye everybody.

Norma: be blessed.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

 

 

S2-Ep14_Alfacena_Millie_Barrett

Season 02, Episode 14
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Alfacena "Millie" Barrett

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

 

Nadine Vogel: Hello everyone i'm nadine vogel your co host of disabled lives matter, this is an amazing podcast but it's not just a podcast, it is a movement and helping me in this movement is norma stanley my amazing co host.

Norma: Hello everyone.

Nadine Vogel: hey norma I hear that we have a fabulous lady, we are interviewing today.

Norma: Yes, yes, Miss Alfacena Barrett and her everybody knows her as millie I actually know her as an amazing woman who has overcome so many different struggles and challenges and.

Norma: You know she actually adopted her nephew and you know he is a model and he rides horses and he does all kinds of amazing things.

Norma: And you know what I love about knowing the story is that they um you know she gives him life and vice versa, and so it's a beautiful thing to see, and I just wanted her to be able to share.

Norma: How she's done the things that she's been able to do over the years, with him, because he's you know millie just come on and say hi and just.

Norma: Come start telling your story.

Millicent: Yes, I am Alfacena Millicent Barrett and everybody affectionately call me millie because when I was growing up, they have problem calling Alfacena.

Millicent: So I was, I was brought up with my middle name instead and in shortened form of Millie. Yes, so I want to tell you first about my nephew/son, if you should say to me to anybody that your aunt calls you he will let them know that's not my aunt, that's my mom.

Millicent: So he lost both parents within a year his father died in 2006 of June and then his mother, shortly after his father died I got a call that she was diagnosed with cancer.

Millicent: put up a good fight, but she didn't make it so she died May of the following year, which is 2007 during that year was the time that I had surgery for my third cancer.

Millicent: And um there was no way for me to leave him in Jamaica, because he was in Jamaica they do have care for special needs but it's not spread wide in the country.

Millicent: I know there was a school, which was close by to them that they could have used but earlier on his mother did not choose to send him to that school she sent him to the regular school because he thought he that he would his speech.

Millicent: would be developed much better which didn't happen. Any how.

Millicent: lucky for him, he had a visa already so I told them to bring him to me, I was discouraged by my family members, because they know what I was going through.

Millicent: But it's like I can say that God had his plan, because when he came I met the right persons everybody that I needed in my life for that moment to get him settled in the US was.

Millicent: brought to my path so his adoption went through like a breeze they told me he had to be with me a year for his adoption to go through, but the person told me go ahead to the Court and get.

Millicent: custody um.

Millicent: not custody.

Nadine Vogel: Guardianship.

Millicent: guardianship that's right for him and getting him enrolled into school that was done.

Nadine Vogel: Millie, what type of disability does your son have.

Millicent: Oh sorry my son is 26 year old young man now with down syndrome.

Millicent: Okay, and his intellectual disabilities is consider moderate.

Nadine Vogel: Okay okay.

Millicent: When he came to me he has very little spoken language.

Millicent: It was very good of receiving the receptive language was good, but is, you know is. I missing the word now, his expressive language is very limited right, so any was like 11 at the time when I adopted him.

Nadine Vogel: Well you're you're thrown into the disability Community like overnight, what was that, like, for you.

Millicent: RIght. You know what when he was born with disability and it took me a while to remember that I used to go to a few meetings, even before so it's as if God was preparing me, so I had I got some pamphlets and i sent it to his mother, so when he came to me now.

Millicent: I wanted to find out everything that I need to do for him to progress.

Nadine Vogel: Right.

Millient: So I went to all the meetings inquire find meetings and go to different meeting I took him to a down syndrome doctor.

Millicent: have them getting fully checked out, and I said to him what level, he is and the doctor was like there's no level, and I was like because I know i've seen different features.

Millicent: Then I guess, I should say of down syndrome, so I thought it was a different level, he said, there was no different lever and.

Millicent: I asked a lot of questions I got him into school.

Millicent: And the class, he was in the teacher were very good they communicated with me they were the ones who introduced me to have him first back riding somewhere along the line and he loved it and for the first time.

Millicent: I think that was like two years later, so I realized that he was disappointed I recognize that feature on his face he wants to go riding that day, and it was too hot.

Millicent: And they call and say you know it's so hot to take the horses out and that look on his face tells me a lot and that he was very disappointed, even though he couldn't express himself.

Millicent: So in 2012.

Millicent: is like I got just like I tell my story, just like Abraham got a call to move to a place where god's gonna bless him that's how I felt that it's time for me to move because I was thinking about him what if I get sick.

Nadine Vogel: Right.

Millicent: What's going to happen to him, because I do have relatives in.

Millicent: At first it wasn't Georgia, as my brother is in Florida, and I was trying to move closer to him and he said they're planning to get a job in Georgia.

Millicent: And when I got off the phone I didn't even call him back and said, you know what i'm going to go to Georgia, because I have other relatives here and I have friends, who I grew up with that would be closer to him.

Nadine Vogel: That support system.

Millicent: Right, moral support.

Norma: Right, that you have to have.

Nadine Vogel: Right.

Nadine Vogel: So, how has your life changed since then.

Millicent: Basically.

Nadine Vogel: What have you learned about.

Nadine Vogel: You and the disability community.

Millicent: Yes, it's going to take a lot to say how my life has changed because when I adopted him I just gone through a divorce and I had a House so being divorce.

Millicent: I was free to do whatever I wanted to do to go wherever I wanted to go, so that got changed because now, I have to change my life to cater to him.

Millicent: And about his needs and can't go wherever I want to go I have to make sure, things are OK for him before I can plan to go anywhere luckily, for me, I got put out of my job at 2009.

Millicent: Because of my health so that made it easier.

Nadine Vogel: Right. 

Millicent: Yes. I didn't have to worry about childcare and and stuff like that, when I was in Delaware so i'd be there when he goes on the bus.

Millicent: When he just came I was still working so two years later, two years later, was when I stopped working.

Millicent: and during that time during that first two years his brother, he has an older brother, he has older siblings was living on the next street so I did have a support system, but they move away from Delaware to Texas, because of jobs.

Nadine Vogel: But Millie, my question is more about you know what have you learned about the disability Community having a having a son, you know and now an adult son with disabilities, what has that taught you.

Millicent: That taught me that they are as regular as possible, if you make it look and look for the resources that they need their life can be as normal, as any other child.

Millicent: He in spite of his barrier to language he was quick, he was smart he learns to do everything he's good, with his hands he's he's good with his eyes he's very observant so whatever you want to him to do you just show it to him, so I realized that they can do almost anything.

Millicent: Just as long as they have the support the support system.

Nadine Vogel: I also think that and norma you and I have talked about this and it's also based on expectations.

Millicent: Yes.  

Nadine Vogel:  Expectation that they're going to do all these things.

Millicent: yeah.  

Nadine Vogel: You force them to kind of live up to that expectation, so to speak.

Norma: Absolutely.

Nadine Vogel: Right and norma for you too.

Norma: you can't coddle them, you have to really.

Norma: put them to the test and let them see themselves as able to accomplish what you expect of them.

Millicent: Yes, that's what I realized because comparing to some that i've seen and with Vilair, they can be discipline don't let them do what they want to do.

Nadine Vogel:  Right.

Norma: They will manipulate you or try.

Millicent: yeah just like regular children just.

Millicent: Like, for example, when I was with his mom before she passed and they've came for a visit and we went to a store and he was running around and.

Millicent: She I said to her, why are you so upset normal children do that, and she was like he's normal which I get what she's saying.

Millicent: But that's what regular children do the mess around in the store and play around stuff because then he was very much younger than 11 you know So yes, they they can be as normal as ever.

Nadine Vogel: Right yeah and I, and I think when we you know refer to the children as being you know typical and how they compare to the typical child, you know one of my, one of my, you know things is.

Nadine Vogel: What makes that child typical like why why, if they have special needs are they not typical right that distinction is always is always bothered because I also think that that sends a message.

Nadine Vogel: And not a message that we want now what I find really I want to say fascinating and overwhelming knowing about millie is that when you were doing all this.

Millicent: mm hmm.

Nadine Vogel: You had just experienced cancer, for the third time.

Millicent:  Yes yeah.

Nadine Vogel: Right, I mean think it, you know norma, you know think how difficult it is, you have a child, born with a disability right you're not expecting it but could you imagine, having just gone through cancer three times and bringing all that in. All at the same.

Norma: Although I can't I can't and that's why I said that I really think people need to know that strength that you have to have gone through what you're going through and still.

Norma: Having the challenge of raising your son, who came to you know as a young boy, but who is you know needed all you needed all your help and how did you develop that strength. where do you think it came from.

Millicent: Well, that has to do with my faith in God.

Millicent: Because I got him when I deal with the third one.

Millicent: But after i've got and it was so funny in the year that I had to adopt him I had to get a clean bill of health which happened.

Millicent: And right after 2007 2008 the cancer return, one of the cancer return, because I have one the MALT lymphoma for me it's treatable but it's nagging it will come back time and time again, so it came back in 2008.

Millicent: And I don't think the doctor treated me properly that's my theory, because it came more aggressive in 2009 but like I said at that time, his brother was living next door, so I had a support system so.

Millicent: I was able to do, treatment and he was as long as his needs are met, he was quiet, he was helpful, he was very helpful.

Millicent: You could ask them to do things and he.

Millicent: would do it, he was a child who will keep his room clean that's what I loved about him.

Nadine Vogel: Wow.

Millicent: He would make his bed and his room had to be clean, so I didn't have any of that issue with him and he was helpful and oh go ahead.

Nadine Vogel: No, I was just gonna say we have to go to commercial break, but when we come back I norma I would love you know I believe millie has a book I would love to learn about the book and just.

Nadine Vogel: You know what let's talk about how you face cancer, not once, twice, three times, but if I understand correctly, five times.

Millicent: Five times right yeah.

Nadine Vogel: Oh my gosh. So for our audience, that alone should keep you at the edge of your seat don't go anywhere we'll be right back.

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

[COMMERCIAL]
Are you familiar with Springboard Consulting.  If you are, you are certainly aware of our annual Disability Matters Awards. This year, 2022, we will live-stream our Europe awards on July 26 & 27, that event is being hosted by Barilla.  And later this year, our Asia-Pacific awards are being live-streamed on November 9 & 10, and that event is being sponsored by Manulife.  Don't miss out! For more information visit www.consultspringboard.com.

Voiceover:  And now back to our show.

Nadine Vogel: Hello hello, this is nadine vogel I am joined by my co host norma stanley hey norma.

Nadine Vogel: Hi, and we are bringing to you another great episode of disabled lives matter and just before we went to break I I put a teaser out there, but it's not it's reality.

Nadine Vogel: That our guest today Millie Barrett has experienced cancer five times, while caring for a child, with a disability and now has written a book so norm i'm going to turn it over to you.

Norma: Well, you know millie, we really need to understand and would love to be able to share with our audience, how you did it five times. is it the same cancer, are they different cancers. What happened?

Millicent: Okay.

Millicent: No it's three different cancer, but I went through cancer five times the first one that I got diagnosed with was a blood cancer.

Millicent: The MALT Lymphoma for me is considered to be treatable, but it can come back time and time again and, for some reason it came back in 2008 and 2009. 2009 they thought they we're going to lose me because the lymphoma.

Millicent: was in my lungs and it was so bad that the day when I left work and didn't return um I had so much pain in my back and luckily my nephew.

Millicent: Had just had a baby, so he was next door, I was able to call him to go upstairs my house and get my breathing treatment, so that was the first cancer, then I end up having breast cancer and my doctor had said to me, because you had that cancer you, you are 10% likely to get another cancer.

Millicent: So that keep me on alert.

Millicent: I was very attentive to my body which everyone should do that if you have any changes in the body check it out.

Norma: mm hmm.

Millicent: Know your body that well.

Millicent: [cough] Sorry.

Millicent: and um.

Millicent: So I had a pain.

Millicent: One evening when I came home from working in my right breast and I just finished my mammogram.

Millicent: And they did call me back for an ultrasound and they came to the conclusion that it was just a cyst.

Millicent: [cough] I'm sorry something. is tickling my throat.

Millicent: It was a cyst.

Millicent: So I went to my doctor right away, I did not wait.

Millicent: When I went to him that's when we notice there was a mass on my breast.

Norma: Wow.

Millicent: And he made an appointment for me to go see the surgeon breast surgeon, I made the appointment and while we're waiting for that appointment my mom died.

Norma: Wow.

Nadine Vogel: Oh my.

Millicent: So I had to cancel that appointment head to Jamaica to bury my mom.

Nadine Vogel: Oh my gosh.

Millicent: Yes, and then, when I came back, I went through a full mastectomy they take a breath off and I tried for the reconstruction that didn't work, so I was doing well.

Millicent: After.

Millicent: The breast cancer and something interesting which I placed in my book, which i'll talk to you a little about three years later I got uterine cancer.

Norma: Oooh.

Millicent: Yes, which one of the medication that I was taking to prevent a breast cancer from coming back when I read that bottle, it said a side effect was uterine cancer.

Norma: Yes.

Millicent: But I had a full hysterectomy I had surgery I didn't go through chemo for that, but it was shortly after I had May.

Millicent: May was when I had the surgery, and then my nephew which is Velair my son now father died that June so those were the things.

Norma: That was like a roller coaster of life. circumstances.

Millicent: Yes, so when I used to talk to people about these things they said you need to write a book and i'm like write the book I used to have problem writing in school.

Norma: mm hmm.

Millicent: But when I got my when they lymphoma came back, and that was a struggle, because I had a girlfriend who said to me.

Millicent: Because if the doctor treat you so many times, sometimes these doctors, just like give up on you and I could not believe those weren't came through.

Millicent: Because the doctor like send me off to somebody else, and I was like Why am I going to that doctor that doesn't make any sense.

Millicent: And when I got to that doctor's office I kept the appointment because I had a relationship with that doctor, he said, why did he send it to me, and when he called his office, he was like.

Millicent: He's out on vacation I left that doctor's office and I came home and I start making phone calls luckily, for me, I had insurance that would take me across state line to get. care.

Norma: Good yes.

Millicent: Many people don't have that you know, so I called and I called like three different I call the lymphoma society, this time and they gave me this idea of doctors who take care of lymphoma and I want to put this in there before I go any further, if you have a cancer.

Millicent: Look, for the oncologist that specializes in your type of cancer. It's much better than going to a general oncologist.

Millicent: The doctor I was seeing first was a general oncologist so practically didn't know what to do so, I got to another hospital and they told me, I was going to get six treatments and praise the Lord I only got four and knocking wood until today i'm doing well.

Millicent: Like I told you, I moved to Georgia and start asking questions about my son So while I was being treated that's when I started my book.

Millicent: And it's like everything got revealed to me, I came up with the title, which is the Faces of Struggles, such as cancers are on the journey to God's Glory.

Millicent: So in my book it just didn't talk about cancer, it talked about divorce, because I was going through divorce, too and I call that I cancer too because it's like everybody was going through some form of struggle with marriages during that time.

Norma: And still are.

Millicent: I put a page in there about my son, because I said God must have a reason to have kept me and took his parents so God have a greater purpose for him.

Millicent: To keep me to keep leading him to where he needs to go, because I was the first one in my family got diagnosed.

Millicent: With cancer and since then my mom my dad my brother and sister in law, all died from cancer and i'm still here, yes, so I put that in my book, a page, let me see if I can find a chapter, that I still.

Nadine Vogel: You know, adding to all of his.

Nadine Vogel: you've lost your support system of your family.

Norma: Right, right.

Millicent: Yeah.

Norma: But the strength that you have and the determination and the will to continue to make sure that Velair had he needed to have to maximize his potential, despite what you were going through.

Norma: that's an added level of strength and courage and determination that you know truly has to have faith based situation because.

Norma: So many people today don't have half the challenges but give up on their children, give up on themselves and that's one of the things that we have to be so aware and try to see if you can connect with some of these people who lose hope.

Millicent: Yes.

Nadine Vogel: And whether and whether it's your.

Nadine Vogel: Religion or spiritual or anything that anyone believes in it doesn't even matter as long as it has the impact.

Millicent: Yes.

Nadine Vogel: Right, and it has the outcomes that millie that you have, because I, you have a big smile, you know people can see you, you have a big smile on your.

Nadine Vogel: Face. A big beautiful smile and and you know I can tell that you practice this mantra of life is good.

Millicent: Yes, yeah.

Nadine Vogel: And I think to norma to your point, you know people will have you know, an infection in their toenail and suddenly life isn't good.

Nadine Vogel: You know glass half empty half full and.

Norma: Definitely. It's perspective.

Nadine Vogel: Yeah Thank you that's the word I couldn't think of it. Perspective.

Nadine Vogel: That that i'm hoping that through this show you're giving everyone.

Millicent: Yes, that chapter about Velair I call it a special assignment I received from God.

Norma: hmm.

Millicent: I see it as an assignment.

Millicent: from God that.

Millicent: it's my duty and my place to make sure that he has everything he needs, and you know to cut to almost to the end.

Millicent: I was one of the person who was God for Covid because he was keeping me busy he has a busy schedule, he has work now he works two days a week is a working man and he loves it.

Millicent: He goes to work, two days a week, he goes to Bowling one evening he has writing one evening he has a church activity another he had a paint class I used to go to a placce for cheerleading.

Millicent: Whatever other Community activity, he loves to dance, he will dance, as long as the music is playing.

Millicent: And, not to mention Norma got me.

Millicent: Our connection the way norma and I met is.

Norma: Oh-oh.

Millicent: Yes we were, and then we have been friends, since that day.

Norma: He's an amazing model.

Millicent: Model.

Norma: An amazing model.

Millicent: That i'm still waiting to see him go on the world stage, because.

Millicent: That's where I think he'll really end up one of these days.

Norma: Yeah.

Millicent: He just loves it and then miss Sharon, let him do whatever he wants to do i'm trying to get him to do more.

Millicent: manly style walking straight down the aisle.

Norma: He does have a flare.

Millicent: He has a flare about it and they love it and he loves it he just and he loves to dress up so almost every Sunday he wears a suit to church.

Nadine Vogel: Wow.

Millicent: So I figured we could get suits to buy very cheap.

Nadine Vogel: um hmm.

Millicent: I go to the goodwill and get him suited out.

Nadine Vogel: Right.

Millicent: Like he has about seven different suits right now and.

Nadine Vogel: Wow. Isn't that amazing.

Millicent: He wears a suit Every Sunday to church and he loves when he received compliment about it.

Norma: Oh yeah they could tell when they looked and.

Norma: That's a lot of what we try to do like you said we tell the stories here.

Norma: On disabled lives matter and and hope that people can see that these communities that just like all of us that, just like everybody else, and we want our family members to live.

Norma: Their best life, just like we do and we got to do what it takes to make sure that happens because that's how we are, we are you know we have mothers were advocates, we are people who want to see see change positive for our community.

Norma: That's what this is about.

Millicent: What I realized is that.

Millicent: moving around the disability Community a lot of people didn't know a lot of stuff that are available.

Millicent: For them.

Nadine Vogel: Right.

Millicent: They like, how you know so much, but because I didn't birth, a child who was disabled I was gifted a child who was disabled.

Millicent: And like I told it's my responsibility for him to have the best life possible so I was going to meetings like once a week I had to go to meetings now because I kind of get what I need for him.

Nadine Vogel: Sure. Absolutely.

Nadine Vogel: Well Millie I just have to say, you know I know that that you feel very lucky.

Nadine Vogel: To have your son to have Velair but I gotta say I he's really lucky to have you he's really lucky, and I think that all of our listeners are better off because of hearing your story today.

Millicent: Thank you.

Nadine Vogel: So, unfortunately, we are out of time, I cannot believe the time.

Norma: It goes fast.

Nadine Vogel: I, but I just want to thank you.

Nadine Vogel: So much for for sharing your story for sharing about your book.

Nadine Vogel: and hopefully you'll keep in touch with us.

Nadine Vogel: And let us.

Nadine Vogel: know how things are coming along.

Millicent: Yes, well, thank you for having me, and now I can give you more of an update if anybody need information about the book.

Norma: Well give them the website real quick.

Norma: Was it.

Nadine Vogel: Right.

Millicent: It's on Amazon, but because I had to change publisher you have to get the one that is written by.

Millicent: lulu. Published by.

Millicent: lulu.com and you can go to that directly website lulu.com and get it.

Nadine Vogel: Okay.

Millicent: You can go to Amazon, but I rather you to lulu as you'll definitely find the correct one.

Nadine Vogel: At all thank you again millie and have a fabulous week.

Millicent: Thank you too for having me.

Nadine Vogel: Absolutely to our listeners.

Nadine Vogel: Thank you for joining us once again norma Thank you amazing co-host that I have and we look forward to the next episode of disabled lives matter bye everybody.

Norma: Be blessed everybody.

Millicent: Bye bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S2-Ep13_Shelly_Simmons

Season 02, Episode 13
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: Shelly Simmons

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel and I am your co host of disabled lives matter we are a podcast, but we are more than a podcast we are a movement and joining me in this movement is my lovely co host norma.

Norma: hi everybody.

Nadine Vogel: Hey norma how's it going.

Norma: it's going great going great looking forward to speaking with our guest today.

Nadine Vogel: Absolutely cuz I gotta tell you with all the crazy things going on in the world, we can take a breath and interview someone who is doing amazing things right all positive. So Shelly Simmons. Shelly, thank you for joining us today.

Shelly Simmons: Thank you so much for having me. uh this is something that's new for me, so I appreciate your patience.

Nadine Vogel: Absolutely so Shelly you're the executive director at the statewide independent living Council in Georgia so tell us first you know what does the independent living Council do, what is your mission.

Shelly Simmons: Well, the statewide independent living Council we are a federally mandated organization so every state and territory in the United States has a S-I-L-C Office what we refer to as "silk".

Shelly Simmons: It is our main responsibility to develop our state plan for Independent Living, and this is a guy that we work closely with with our Center for independent living.

Shelly Simmons: Who are the service providers in order to address some of the needs that are going on within our state, we also work very closely with our legislature.

Shelly Simmons: To help create policy change that will benefit individuals with disabilities and when Then again, we also work with some of our state agencies, like our vocational rehabilitation our GA advocacy office and our Council on developmental disability.

Nadine Vogel: Got it got it now are all um silcs as you call them are all of them, the same, since, since it is federally funded are all of them the same throughout the country in terms of the mission and what they do, how they do it.

Shelly Simmons: Well, the mission can be different.

Shelly Simmons: And again, that kind of comes up when.

Shelly Simmons: you're developing your state plan what your mission will actually be ours is just to make sure that individuals with disabilities are.

Shelly Simmons: included within and can equally participate within their communities.

Shelly Simmons: For each.

Shelly Simmons: So each silc office can have, and they all do have different mission plans.

Shelly Simmons: And again, that all depends on what's going on within their state.

Nadine Vogel: Okay, so, even though it's federally funded it's more state driven.

Shelly Simmons: Correct .

 

Nadine Vogel: Got it got it are there are there criteria to be able to make use of the services.

Shelly Simmons: Well, for us, we don't provide direct service we're not the direct service provider, ours is more of a policy driven entity so.

Shelly Simmons: We provide also support to our Centers for Independent Living, so we're just trying to make sure that they have what they need in order for them to work with the consumer or their or their clientele.

Nadine Vogel: So, can you tell us the difference between what you do and then what the centers do and how you're all related.

Shelly Simmons: Absolutely, they the centers are kind of umbrellaed under us again we're policy driven, so we will try our best to advocate and educate the legislature, on what the needs are.

Shelly Simmons: For the centers to be able to do business trying to make sure that we have the right funding in place so that the centers can do what they need to do, we will also take on larger issues again that will cover the entire state.

Shelly Simmons: Here in Georgia, we have nine centers for Independent Living, and most of them cover several counties and then we have an area that's not being serviced at all, and we call that the unserved, or the wide area, and so what i'd like to do is.

Shelly Simmons: i'm trying to make sure that the state has full coverage and so. Those are some things that the SILC office will do.

Shelly Simmons: And then again transportation housing, employment. Those are some of the biggest things that we deal with in most them SILC offices and then some some of the same.

Shelly Simmons: issues and barriers that people with disabilities face so here in Georgia, one of our goals and objectives is to make sure that we have affordable and accessible housing.

Shelly Simmons: And so we try to work with developers and try to see how we can work closely together in order for new construction to go up for not segregated housing, but more inclusive housing, but to make sure that these things are affordable and accessible.

Norma: That's awesome.

Shelly Simmons: Our Centers for Independent Living, they are the consumer driven entity, so the centers may actually provide five core services.

Shelly Simmons: Information and referral, independent living skills training, peer support, and i'm gonna i'm now gonna forget a couple of them transition for individuals who are either transitioning from my high school to adulthood and also nursing home transition, and the fifth core service.

Shelly Simmons: Oh. system and individual advocacy.

Nadine Vogel: OK.

Shelly Simmons: So somebody has an issue the center will work with them to help educate them on whom they need to contact and what they need to do in order to do that, but each Center also has its own unique.

Shelly Simmons: spin and services and, depending on the region will determine what other services are being provided, but all five see there are five core services have to be fulfilled within the nine centers.

Nadine Vogel: got it it's it's again just based on premise it's for adults right, so it would be 18 and over 21 and over.

Shelly Simmons: No, in fact, we have a kind of a model here from the womb to the tomb.

Shelly Simmons: For anybody newly disabled, or a parent who might be have a child with a disability and just doesn't know about the resources that are out there and available, so no, we will work with anyone.

Nadine Vogel: So and that's from a policy standpoint, as well as from a Center standpoint?

Shelly Simmons: Correct.

Nadine Vogel: Wow I I did not realize that, so you know i'm on my familiarity with independent living centers is more in California.

Nadine Vogel: In Florida and and so you're right they do, where I had no idea I thought every one was the same.

Nadine Vogel: So this is this is really amazing to know um and the policies that you develop I mean obviously the centers because they are consumer driven they hear directly from families from individuals with disabilities, so they know what's needed.

Shelly Simmons:  Yes.

Nadine Vogel: Right at that level from a state level from a policy perspective, how do you, do you kind of hear what's going on at the Center level that rolls up and that's how you determine what you all need to do, or is it a different process.

Shelly Simmons: Well, for us and for me what I typically done, I will hold.

Shelly Simmons: Excuse me, town hall meetings around the state and I usually do that in preparation of developing our state plan so i'll state plan is every three years, and seems like we all wish that we could change that to five years.

Shelly Simmons: Because as soon as you get going and one. It's time to develop another one.

Shelly Simmons: And that's where we are right now we're in year two, and so I will be sometime this summer early fall doing town hall events around the state.

Shelly Simmons: In a way of spreading that we have virtual options, now that we can hear from more individuals and then we'll take the top three or four.

Shelly Simmons: and try to develop our state plan around that my mom also had a really good relationship with our Center diretors and also fund monthly meetings with them were able to kind of determine what are some of the main things that we need to focus on

Nadine Vogel: okay.

Nadine Vogel: And just like you said it's from you know birth to death right it covers all ages now at the Center level is there any criteria either financial or otherwise that someone needs to meet in order to receive services.

Shelly Simmons: They just need to have a disability.

Nadine Vogel: Disability of any type.

Shelly Simmons: Of any type.

Nadine Vogel: wow.

Shelly Simmons: Well you know some of the other state.

Shelly Simmons: organizations like our Council on developmental disability they mainly deal with D-D-D.

Shelly Simmons: I should say developmental disability and.

Shelly Simmons: intellectual disability i'm sorry, you know we live in a world of acronyms I have to be.

Shelly Simmons: Concious of what I say i'm in some way but there's anybody now, we may not be able to provide say the right service, and we will make those referrals and provide resources, but no, there is nothing required other than having a disability.

Norma: Can I ask a question?

Shelly Simmons: Yes.

Norma: Somebody called me not too long ago about she has a daughter, who has physical and intellectual disabilities, she went to college and um.

Norma: In a car accident, and has been you know basically disabled ever since and she's in her 20s and her mother's trying to make the home.

Norma: Really comfortable for her sensory issues and things like that and she's having issues with the H-O-A in whatever she's trying to do, in her front area.

Norma: For her daughter and she's trying to figure out who she should talk to about that and I think I may have referred her to your organization, but I I can't imagine the H-O-A would be so.

Norma: They don't seem to really have a sensitivity.

Norma: to that.

Norma: And I was just wondering, is that something that your organization will help address or refer or How does that work because H-O-As.

Norma: To me a little bit intrusive but how does that work, I mean she's on her own property trying to put in something on her yard that her daughter would enjoy from a sensory standpoint, as well as i'm not quite all sure, but somehow the H-O-A is not happy with it, and they're not responding to her you know.

Nadine Vogel: H-O-As, H-O-As have a life of their own, I can tell you.

Norma.  Ah.

Nadine Vogel: But Shirley i'm just wondering if that wouldn't be a protection and advocacy.

Norma: right.

Shelly Simmons: It would even for here in Georgia, our metro fair housing. That could be an.

Shelly Simmons: issue that they will take on.

Shelly Simmons: And we will refer that.

Shelly Simmons: individual to them in order to get the.

Shelly Simmons: The proper and correct guidance on how to address that. Ah granted H-O-As have and mainly I believe that it can be, for you know aesthetics how and made to look or anything like but as a reasonable accommodation she just has to be willing to kind of apply for it.

Norma: Yeah.

Shelly Simmons: But the metro fair housing will be a good option for her. too.

Nadine Vogel: Yeah the HOA um because we've actually had some involvement with that and.

Nadine Vogel: to your point shelley you know they look at aesthetics, they look at other things, and say they have a responsibility to the whole place and because it's private and it's not public, they don't even have to they don't fall under the ADA.

Shelly Simmons: Yeah.

Norma: Wow.

Shelly Simmons: That's true.

Nadine Vogel: Which is even just crazier, in my opinion, but.

Shelly Simmons: And I and again i'm thinking will be, and it will just mean some advocacy work for her.

Shelly Simmons: To speak with some of her neighbors.

Shelly Simmons: To say hey you know, this is what i'm trying to do and find out what why, are they so opposed to this.

Shelly Simmons: She really just needs to get out there and speak with her and even possibly present plans on what it might look like.

Shelly Simmons: Cause, you know you you hear one thing.

Shelly Simmons: But to actually see it could be something else may not be as overwhelming as they think it mgiht be.

Nadine Vogel: Norma, i'm so glad you brought that up because you know that's a topic that we've not addressed. in the past.

Nadine Vogel: And one I think that we should actually think about maybe even having a session, you know, on that because.

Nadine Vogel: People really confused about that a lot of people live in condos and buildings that have associations and board of directors and most of we find don't know what their rights are.

Nadine Vogel: And where they can go to get help, so we are on at that point where we need to take a short commercial break so let's do that and for our listeners don't go anywhere, we have more to talk about with shelly simmons be right back.

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

[COMMERCIAL]
Are you familiar with Springboard Consulting.  If you are, you are certainly aware of our annual Disability Matters Awards. This year, 2022, we will live-stream our Europe awards on July 26 & 27, that event is being hosted by Barilla.  And later this year, our Asia-Pacific awards are being live-streamed on November 9 & 10, and that event is being sponsored by Manulife.  Don't miss out! For more information visit www.consultspringboard.com.

Voiceover:  And now back to our show.

Nadine Vogel: Hello Hello everyone welcome back this is needing vogel i'm here with my Pal my co host norma stanley.

Norma. Hey guys.

Nadine Vogel: And we are talking with shelly simmons today and having.

Nadine Vogel: Just a fabulous discussion about you know independent living Council specifically the one in Georgia, the statewide but also independent living centers and how they all work together um.

Nadine Vogel: You mentioned shelley before the break about housing.

Nadine Vogel: That you know, having appropriate housing having enough housing so i'm just wondering if you can elaborate either on that or on some other initiatives.

Nadine Vogel: programs that you think are really important that you guys are focusing on because I want to talk about some barriers that exist, and I do you think housing is one of those barriers, I think it kind of connects.

Shelly Simmons: Absolutely, in fact, most of the barriers that people with disabilities encounter they all intersect and housing, nothing can be more critical well.

Shelly Simmons: They have some other things, of course, but.

Shelly Simmons: housing and I don't know you know how familiar, you are with the the, especially in the metro area of Atlanta the landscaping has changed and it's changing. There are cranes all over the place and it's all for luxury housing.

Nadine Vogel: Yes.

Shelly Simmons: So people with disabilities are being forced out of areas that have little to no transportation.

Shelly Simmons: Less access to resources like the grocery store or maybe even family and that's because of housing has become so unaffordable for many.

Shelly Simmons: Although people disabilities may be working there's a large population are relying on fixed incomes their social security or SSI or anything like that, and so their options are very limited, and so it is our desire to work with.

Shelly Simmons: Various developers and try to really advocate for more affordable and accessible housing, especially for individuals who may have sensory or physical disabilities a lot of these units, do not.

Shelly Simmons: exist, and once somebody gets into a unit and if it happens to be within an apartment complex they end up staying there because the stock is so limited.

Shelly Simmons: They can't afford to go anywhere else, and so we're just trying to change that conversation not only with our city leaders, but also with various developers and saying that we can make this happen now.

Shelly Simmons: You know, we might be able to catch up.

Shelly Simmons: The demographic is changing people are living longer, you know, and so we need to be able to make sure that we can accommodate everyone.

Shelly Simmons: And and with properties that are mixtures regardless of your income, and you will be able to stay with somebody else and may be at the very top of the chain, and with that we really try to promote inclusion So those are some things that we're working on.

Nadine Vogel: Yeah with housing too. Norma, you know if you think about it, and you know i'll just speak for myself, I won't speak for you two, but I am not getting any younger.

Norma: Exactly.

Norma: We are all going to be seniors at some point.

Nadine Vogel: The population is aging.

Norma. Absolutely.

Nadine Vogel: I'm amazed when you bring up about accessibility right it's not necessarily just for someone who has a disability today.

Norma. Exactly.

Nadine Vogel: Or was born with.  It could be someone that has an age related or develops age related disability later in life, you know i'm amazed i'll just share, you know when I go to a hotel I travel a lot for business.

Nadine Vogel: And when I go to a hotel i'm amazed when they don't have the magnification mirrors right i'm like I can't see anything I can't lean over I can't see like something even as simple as that.

Nadine Vogel: Right and.

Nadine Vogel: Obviously, many others that I do think that this accessibility issue is so critical now i'm curious, how are the developers responding.

Norma: Right.

Shelly Simmons: We've actually, had a few developers that are very receptive there is one particular group L-D, as in dog D, G as in George was actually has various properties around our state.

Shelly Simmons: They reached out to us and, at the time, my housing coordinator and I we went to the property and was able to tour it and offer suggestions on more accessibility and they were very open to that in fact.

Shelly Simmons: I will be meeting with them on this Friday, they have a new property just outside.

Shelly Simmons: Our metro area well it's in the metro area, but just outside the city and it's in development and they've taken a lot of our suggestions into play, and also we're going to be meeting with.

Shelly Simmons: county housing authority Dekalb county housing authority to talk about waivers and or vouchers I should say.

Shelly Simmons: For individuals with disabilities, and getting together a waiting list for this affordable, accessible housing. So, they've been very receptive, then I think I may bring in a couple other people other developers to this meeting, in hopes of really seeing the need and again, as you were saying.

Shelly Simmons: Our people our aging, and I want to be able to age in place, and all that should be done in safe areas and.

Shelly Simmons: When developments that are new and clean are tearing one down and that's what that's what the narrative that we're. Trying to change. 

Nadine Vogel:  and you know for norma for you, for me, you know we're moms have adult daughters with disabilities and you know we would want to know that our daughters potentially could could live in these places.

Nadine Vogel: And I think it's an issue of of avoiding segregation as well, right, that you know it doesn't have to be and we don't want it to be a development of just people with disabilities.

 

 

Nadine Vogel: You want it, norma, I mean you want an integrated right.

Norma: absolutely.

Shelly Simmons: Absolutely 

Shelly Simmons: Absolutely and I think that's, the only way that we can.

Shelly Simmons: continue to learn from another one.

Shelly Simmons: learn from each other, continue to always learn and not completely lose our compassion for one another and that's the only way that's going to happen is to be integrated into the Community and.

Shelly Simmons: And just realize when people say Oh, you know, maybe I get around a little bit differently, but you know my desires and needs are exactly what yours are so yeah full integration absolutely.

Nadine Vogel: And it was about transportation right, because one of the challenges for people, especially with physical disabilities right they you know they want to.

Nadine Vogel: live in their own home and live in a nice new development, but we do find as new developments crop up, especially as we get further and further outside a metro area in particular, you know doesn't matter where we are in the country transportation. is difficult to access.

Norma:  yes, it's a real issue.

Shelly Simmons: Absolutely.

Nadine Vogel: So, is that part of this discussion that you take on.

Shelly Simmons: Absolutely in fact we've been able to work with.

Shelly Simmons: What they call A-R-C the Atlanta regional Commission, I have a really good mobility coordinator.

Shelly Simmons: And she pretty much covers everything transit mobility buttons on the plane a walkable sidewalks anything of that nature and, as you mentioned once we come outside the metro area there's very few options and so we're working.

Shelly Simmons: With the various counties trying to get pilot programs up or micro.

Shelly Simmons: Excuse me on demand transportation pretty much when you can you know make that call and be able to set up transportation within a couple hours.

Nadine Vogel: I mean, I remember I lived in Los Angeles, many years ago and and.

Nadine Vogel: They were very forward thinking for Independent Living centers and things at that time and i'm going back now like 30 years ago 25 years ago.

Nadine Vogel: And I remember, there was so successful, but then the transportation issue, because even even in the metro you know LA, especially in those days, there was no public transportation line at all and.

Shelly Simmons: LA is my home.

Nadine Vogel: Well, okay, we can have a conversation about that.

Nadine Vogel: So if you, you know just we only have literally like three minutes left four minutes left um but you know just looking forward.

Nadine Vogel: Next, you know one year three year what, what are the one or two things that really jumped out at you that that you need to be focused on because of the barriers either either, because the barriers that are out there, because the opportunities that you see.

Shelly Simmons: And unfortunately they just never seem to change, you know housing is still a big thing we actually have a program.

Shelly Simmons: With acronym of H-A-T, and it's Home Accessible.

Shelly Simmons: yeah Home Accessible Program and basically we received funding from our department of Community affairs to help.

Shelly Simmons: With accessibility issues for individuals with disabilities and we make it very simple for people to qualify for home modifications, whether that is a new bathroom what the role is shower, winding doors opening up.

Shelly Simmons: modular ramps, and so we.

Shelly Simmons: were doing very, very well we've had a couple of hundred thousand dollars.

Shelly Simmons: But that has drop down to one hundred that was another thing that we were trying to educate an advocate more for because we have over 700 individuals waiting for home modifications.

Shelly Simmons: That simply cannot afford it so bad hundred thousand dollars doesn't go very far.

Shelly Simmons: Employment is a big issue for us as well.

Shelly Simmons: Especially by individuals who may participate in some of our waiver progreams you know their caps and such poverty levels that.

Shelly Simmons: You know, it almost doesn't make sense to go to work for people disabilities, want to work, but if they go to work and earn too much money then they're cut-off of that waiver so that's policy that we're trying to change.

Nadine Vogel: i'd like to lead that change.

Shelly Simmons: And I think a lot of things.

Shelly Simmons: You know we would like to see as well we're trying to model some other states like Washington State Maryland I think Arkansas might have a good Program.

Shelly Simmons: And somewhere in trying to do some of those things so it's always something about housing transportation i'm hoping that some of these micro transit pilots will be up and running.

Shelly Simmons: and

Shelly Simmons: county officials and state officials will see actually how you can add not only for people disabilities or people who are aging, but just for the Community as a whole to be able to access the resources within their own community so.

Shelly Simmons: i'm always something to do.

Nadine Vogel: always something to do so, we have about one minute left norma any final question or comment you'd like to address.

Norma: No, I just didn't have I had no idea of the extent of what you guys did that was really very cool and to learn about, and you know i'm looking forward to you know possibly checking out some of those programs for those senior citizens like myself.

Shelly Simmons: Absolutely, you reach out to us anytime.

Shelly Simmons: We're the best kept secret.

Nadine Vogel: There you go let's change that right.

Nadine Vogel: Now Shelly someone wants to reach you guys, how do we do it.

Shelly Simmons: Well, you can just visit us on our website at S-I-L-C-G-A.ORG or look up the independent living Council of Georgia, you can call us at 770-270-6860 and you'll be able to reach us at any time.

Nadine Vogel: And if someone is what if our listeners say Okay, I want to reach you guys, but I'm in Florida, would it be S-I-L-C-F-L.ORG.

Shelly Simmons: that's correct.

Nadine Vogel: Okay yeah I figured that out.

Nadine Vogel: For listeners depending what state you're in that's the formula to follow, I do hope that you will reach out to one of these agencies in your state, because it sounds like.

Nadine Vogel: there's some amazing amazing services that you all, provide that like you said you're the best kept secret and we gotta change that.

Nadine Vogel: So, shelly thank you so much for.

Nadine Vogel: joining us.

Shelly Simmons: Thank you ladies.

Nadine Vogel: Norma Thank you, as always.

Norma: Thank you guys look forward to the next one.

Nadine Vogel: See you next time on disabled lives matter bye bye.

Norma: bye bye everyone.

Shelly Simmons: Bye bye.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates.  The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast.  The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

S2-Ep12_DJ_Hear_No_Evil

Season 02, Episode 12
Co-Hosts: Nadine Vogel & Norma Stanley
Guest: DJ Hear No Evil

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone and welcome to tonight's episode of disabled lives matter. Yes, this is a podcast but it's more than a podcast You all know the answer it's a movement, and I am joined tonight by my fabulous co-host Norma Stanley hey Norma.

Norma: hey how is everybody doing today.

Nadine Vogel: Good i'm doing really great knowing who we are interviewing tonight, DJ Hear No Evil.  Well I just love the name just to. start.

Nadine Vogel: So Norma why don't you take us away.

Norma: Well I’m excited that we do have Mr. Anton DJ Hear No Evil Abraham, also known as the Silent Assassin, which we got to know what that came from.

Norma: He is a deaf DJ, who is here to breakdown some barriers and take the music industry by storm and I am loving every moment of that so I can’t wait for you to share what your life story is all about, thank you for being on Disabled Lives Matter today.

DJ Hear No Evil: yeah, thank you for having me. I am pleased that you guys invited me to tell.

DJ Hear No Evil: my story.

Norma: Absolutely absolutely well you know in reading your bio I have to say that we have something in common.

Norma: We’re both from Mount Vernon New York.

Norma: I grew up in Mount Vernon too. I actually moved there when I was 16 so I lived on North Lincoln Avenue I don't know if you know what that is.

DJ Hear No Evil: yeah I know. Yeah.

DJ Hear No Evil: yeah that’s where I lived most of my life in Westchester county.

Norma: Yes, yes, yes.

Norma: And you know they refer to Mount Vernon as Money Earnin’ Mount Vernon because so many celebrities have come out of Mount Vernon and you know people like Denzel Washington Sidney Poitier used to live there Ruby Dee live there.

Norma: And Heavy D. the rapper.

Norma: grew up there, my sister actually went to school with him so many, many um what’s his name, Al B. Sure came from Mount Vernon.

Norma: Yes, yes.

Norma: So I wanted to be one of those people one day, but nobody knows who I am but.

Norma: I love the idea that grew up in Mount Vernon with all those money earning people.

DJ Hear No Evil: That’s right. We have to represent our hometown you know.

Norma: You Mary J Blige is not from Mount Vernon, but she was from Yonkers.

Norma: It’s still Westchester county.

DJ Hear No Evil: yeah yeah, you can say that.

Nadine Vogel: Pressure, a lot of pressure on you.

Nadine Vogel: Just saying.

Norma: It’s a lot.  Well, you know I’m so excited to learn about your story you.

Norma: have done a lot in your career and in starting your brand as DJ Hear No Evil, first of all, how did you come across the name and how did you even get started in the DJ space.

DJ Hear No Evil: Okay, so DJ Hear No Evil was given by my fraternity, Alpha Phi Alpha

DJ Hear No Evil: Fraternity incorporated, which I pledged during college.

DJ Hear No Evil: So they gave me the name Hear No Evil.

DJ Hear No Evil: So I took that name, Hear No Evil as it represents who I am, i'm hard of hearing myself even though I could say I’m deaf. 

DJ Hear No Evil: I am hard of hearing in a deaf world and hearing world which I am in both worlds. So.

DJ Hear No Evil: I represent both. The old DJ name was DJ Ant, A-TON-Ant,  and my father was like what are you going to do with that name.

DJ Hear No Evil: I like that name, but that’s my government name, and I don’t want to use my government name.

DJ Hear No Evil: So as it, as time goes on, it was given to me by my fraternity, it represents who I am.

Norma: awesome.

Norma: awesome and so tell us you know.

Norma: Since you started this game, first of all, how did you get into the DJ space.

Norma: How did that begin.

DJ Hear No Evil: Oh.

DJ Hear No Evil: I started picking up the DJ-ing.

DJ Hear No Evil: At the age of thirteen.

DJ Hear No Evil: Because my father was a DJ himself.

DJ Hear No Evil: He was a DJ, he was a basketball player, he did a lot of stuff so I got into the DJ game because my dad would DJ events like a club, bar so forth, so I had to go with him to see what he does.

Norma: Okay.

DJ Hear No Evil: Or how he rocked the party, how he was meeting people, you know how did he was able to get more gigs.  In the local area and also outside Mount Vernon.

DJ Hear No Evil: You know, like in different states, so I’ve tried to pick it up from there since the age of thirteen so as time went on I practiced and started to have my own parties, and then had my own parties in college.

DJ Hear No Evil: My first freshman year. Yeah, it was my freshman year.

DJ Hear No Evil: Where I threw my own party at someone at the apartment, it was late, you know. 

DJ Hear No Evil: and the cops had come. 

DJ Hear No Evil: I’m sure you know at a party. 

DJ Hear No Evil: You know how that goes.

DJ Hear No Evil: So yeah that’s how I picked it up from my father.

Norma: Awesome. So it's a family business in a way.

DJ Hear No Evil: Yeah, basically.

Norma: That’s really cool and so, you said that your bio talks about you, using your hands to express yourself how do you say how does that work, because DJ-ing is an art.

DJ Hear No Evil: Um yes. I mean the movement is art.

DJ Hear No Evil: It’s a form of expression the way you can express yourself.

DJ Hear No Evil: It’s about how you rap, think about the night.

DJ Hear No Evil: the background or, whatever the case, might be, so that same concept, I let my hands speak.

DJ Hear No Evil: Because I don’t always speak on the microphone, I use my hands. So that tells the story.

Norma: Okay. Okay.

Norma: That's pretty cool so is that particular genre of music that gets you more excited than other types of music or is you just like whatever is out there.

DJ Hear No Evil: Well, I’m more into like hip hop.

DJ Hear No Evil: Yeah I pick up on the music of my family background my mother is Jamaican, and my father is Dominican.

DJ Hear No Evil: We do have some Hispanic family. some hip hop family and some you know, Jamaican family so I started picking up the different music and genres, I have to play different music and genres, because we need to be diversified.

DJ Hear No Evil: Like I mean if we go to a party, and nothing against, but if someone were to hire you to do a Bar Mitzvah.

DJ Hear No Evil: Nobody’s doing hip hop too much, but mix the music with pop music or rock-n-roll. So you have to have that in the folder.

DJ Hear No Evil: Basically what I’m trying to say is that we have to be ready whatever the matter. Yeah.

Norma: awesome, awesome.

Nadine Vogel: I have a question um my understanding is that you have won some DJ battles, I think, actually you've won two of them right, I think you the first Black Deaf hard of hearing DJ to win these battles which.

Nadine Vogel: sounds amazing.

Nadine Vogel: Maybe you could tell us what is a DJ battle.

DJ Hear No Evil: Okay, so.

DJ Hear No Evil: Those who are diversified battle about it. Basically what I did was get another DJ, with a regular turntable like this.

DJ Hear No Evil: Yeah I’m sure you’ve seen some movie called Juice.

DJ Hear No Evil: About a DJ battle, where they go back and forth.

DJ Hear No Evil: With the tricks.

DJ Hear No Evil: You know with the name calling or whatever is done going back and forth.

DJ Hear No Evil: Same concept.

DJ Hear No Evil: Same concept, so I battle against so my both battles were with about 20 DJs.

DJ Hear No Evil: 20 DJs, so I mean look at look it was pressure yes, but everyone knew I was nervous, but at the same time I still have the confidence.

DJ Hear No Evil: I had the confidence and was going on, and then you know like the rocket you know of 20 DJs, you know 10-9-8 whatever the bracket set and it came to  the final.

DJ Hear No Evil: Later to find out that I couldn’t believe I made it to the final.

DJ Hear No Evil: I didn’t think, I didn’t think I was going to win.

DJ Hear No Evil: Because I wasn’t sure of myself. So time goes on.

DJ Hear No Evil: I went to work in.

DJ Hear No Evil: Brooklyn.

DJ Hear No Evil: Which is in New York City.

Nadine Vogel: Yes. Brooklyn.

DJ Hear No Evil: I had to battle against a DJ from North Carolina.

Norma: Okay.

DJ Hear No Evil: So.

DJ Hear No Evil: He had made it to the final to battle against me. So I said okay.  He’s from North Carolina and I’m from New York City.

DJ Hear No Evil: So I have to represent. 

DJ Hear No Evil: New York City. And Mount Vernon I have to.  So I was going in, it was hard. It was hard..

DJ Hear No Evil: Until you get to the final round.

DJ Hear No Evil: And then, I didn’t even practice that part, I figured it would come out of my head, because I play the music in my head. You know what I’m going to do this, I’m going to play the music in my head. So I said, okay. and then I’ll put it in order with my remix and with some tricks.

DJ Hear No Evil: And got the people to go crazy because it just happens even though my mind was locked up.

DJ Hear No Evil: But I was going in and then you know from then I rocked. It was an amazing feeling, amazing feeling.

Norma: I’m sure.

DJ Hear No Evil: And then the second battle.

DJ Hear No Evil: It was in New York City as well.

DJ Hear No Evil:  but it was a good battle and captured the W.

DJ Hear No Evil: But then it was a little different because it was more party rocking. So it’s a little different. So same situations with the countdown.

DJ Hear No Evil: I wind up out of it. I did improve by the two DJ battles, but I did not win. I came in like in fourth place, and then in 10th place. Because I kept going.  I kept going until I won.

DJ Hear No Evil: Am I satisfied, no I am not satisfied, I want to win some more.

DJ Hear No Evil: So the reason I want to win some more is I want to try to break the barriers. So people like me the deaf and hard of hearing can do anything.  I’m not talking about to DJ, but in general.   

DJ Hear No Evil: Like to dance. A lawyer, business.

DJ Hear No Evil: You know TV acting, TV shows, movies, all that.  So we have to break the barriers so that people can use us and we can work together.

DJ Hear No Evil: If that makes sense to you.

Norma: Awesome, awesome, and so I would like to know.

Norma: See one of my questions is um. 

Norma: The obstacles obviously you had to deal with is that you are hard of hearing what kind of obstacles, did you have to overcome, to be able to get to where you are now you know after you won some of those battles.

Norma: You know now you’re a professional at it what kind of obstacles, did you meet as you were climbing the ladder.

DJ Hear No Evil: Well I would say the top two.

DJ Hear No Evil: One is communication. That’s number one, that’s very, I mean that’s where we had an issue with it, I mean it’s been going on for years. For years.

DJ Hear No Evil: And number two is my ear, so I don't hear everything so that’s why I have to use my eyes.

DJ Hear No Evil: So to communicate. So if I communicate with you I used them to read lips.  I can here too, but I can read lips. 

DJ Hear No Evil: So I can make sure it fits what I think is what you are saying. 

DJ Hear No Evil: So those are my top two I’m facing right now.

DJ Hear No Evil: So people are thinking, oh he’s deaf so put him to the side.

DJ Hear No Evil: No I’m ready to work.

DJ Hear No Evil: You know because I mean I have, I have been I’ve the mindset I'm intelligent, so use me. because I can make you money you can make me money so let’s do it.

DJ Hear No Evil: So that’s one of my top two strategies I’m breaking through right now.

Nadine Vogel: Yeah it is it you know it's in many ways it's not your barrier right it's the barrier of others, there are barriers of thought they can't get past because they know someone has a disability right they make X assumptions and they just can't get past that but, but you doing what you do.

Nadine Vogel: You force them to get past it.

Nadine Vogel: You force them to see beyond disability and I think that's what everybody needs.

DJ Hear No Evil: Right. Most definitely most definitely because we.

DJ Hear No Evil: all have different strategies, so we have to break the barrier, I mean it’s 2022 it’s not like it’s 1960s where Martin Luther King has to fight for our rights, now people want to put their news.

DJ Hear No Evil: in the digital age, because the news and social media is powerful. So work with us, we know what you are doing.  

DJ Hear No Evil: You know we’re not that dumb. You know.

Norma: Awesome so tell us. Who are.

Norma: Some of your favorite artists that you like to play, because obviously you do world music.

Norma: Because like you say coming from the Caribbean and the Hispanic community and the Latino community and so there's a lot of different types of music that you probably play, but who are some of your artists that you kind of prefer to to play when you're doing your DJ-ing.

DJ Hear No Evil: So.

DJ Hear No Evil: The DJs that impact.

DJ Hear No Evil: Making the difference, I would say, it’s hard to pick on, one of the top DJs, I would say is DJ Scratch. He’s from New York City. He changed the game and he kept the turntablism running.

DJ Hear No Evil: He DJs for the big artists like Busta Rhymes, LL Cool J, so forth, so he teaches where turntables and music actually are coming from.

DJ Hear No Evil: That will make me go more deep about the music. That is what my father taught me which is cool, but he did say that we have to understand.

DJ Hear No Evil: where the music comes from where it originates. So I, no doubt, started to understand more about that from DJ Scratch

DJ Hear No Evil: Now other artists like rappers, singers.

DJ Hear No Evil: You know, I have to say.

DJ Hear No Evil: Jay-z. Jay-z is a rapper.  He tells a story.

DJ Hear No Evil: He had more than 1 billion, he has a clothes business.

DJ Hear No Evil: he is a part owner

DJ Hear No Evil:: of Brooklyn Nets team.

Norma: Oh wow.

DJ Hear No Evil: So what I’m trying to say is. The sky's the limit.

DJ Hear No Evil: So there’s more than one thing you can do, because you can’t just focus on one thing. Because we have to have different avenues where you can add to your resume.

DJ Hear No Evil: So people can respect you for more than what you're doing.

Nadine Vogel: I have to step in, because we must go to commercial break I’m just summarize, but the conversation I’m not even paying attention to the time.

Nadine Vogel: We need to go to a quick commercial break so for our listeners stay tuned Norma and I and our DJ Hear No Evil we'll be right back.

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

[COMMERCIAL]
Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the BRG Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover:  And now back to our show.

Nadine Vogel: Hello to our listeners, this is Nadine Vogel I am joined by Norma Stanley we are the Co-hosts of Disabled Lives Matter and if you've been listening so far to our interview with DJ Hear No Evil, you know Disabled Lives do Matter and why so Norma I’m going to turn it back over to you.

Norma: Well yeah I mean there's just so many questions I actually want to ask but, you know.

Norma: In history, I understand there are some people in history that you really admire that you would like to you know share with people as to why you admire those people can you share a couple people in history that you admire and why that is.

DJ Hear No Evil: Oh the few people I look up to is.

DJ Hear No Evil: DJ Scratch.

DJ Hear No Evil: And my, my mother, my father, he was in the music game.

DJ Hear No Evil: All those people inspired me to work harder.

DJ Hear No Evil: I can’t give up.

DJ Hear No Evil: So because what I am really trying to say is that I cannot make any excuses. 

Right.

DJ Hear No Evil: If it’s there, I can get there, I just have to overcome my obstacles.

DJ Hear No Evil: So that’s how they motivated me and when I stay motivated for myself to get to where I need to be at.

DJ Hear No Evil: I’m talking about my life, my health, my mindset.

DJ Hear No Evil: The whole, everything.

Norma: Right and.

Norma: As your you know progressing in your your career and making such great name and reputation for yourself how are you being received from the community in general, I see you have a really big social media following How do people receive your work obviously you.

Norma: love it, but I would like to know what you think.

Norma: How do they respond to you when you do your gigs.

DJ Hear No Evil: So what I do is, I started with social media, I keep postings of my work.

DJ Hear No Evil: Not my work, but to make people aware of 

DJ Hear No Evil: deaf history, and I use sign-language. 

DJ Hear No Evil: and motivate everybody.

DJ Hear No Evil: by talking about the kids and.

DJ Hear No Evil: looking through their eyes and adding a hashtag, got my fraternity brothers, because they are all over the country. 

DJ Hear No Evil: And all over the world.

DJ Hear No Evil: Not just the United States I’m talking about, all over.

DJ Hear No Evil:: And in the deaf world too so that's how I got a lot of people come to check my work.  Not just myself, I have them look at other deaf composers, so I get their name out there as well.

DJ Hear No Evil: You know, so they'll make it and I’m not trying to be selfish, but at the same time, I have to show my work too.

DJ Hear No Evil: Cause I'm trying I'm trying to make it too.

Norma: That’s right, that’s right.  I’m not mad at’cha.  That’s what you gotta do.

Nadine Vogel: You know.

Nadine Vogel: You know it's interesting a comment you made early on keeps kind of swirling in my head a little bit, which is about you know, using your hands to express.

Nadine Vogel: And I keep coming back to this concept, because obviously for someone who is deaf you do use your hands to express, but I don't think that people equate it and realize that for a DJ.

Nadine Vogel: Right if not for your hands, how will you, you know express this and I just this takes me to a whole other discussion about you know, have you ever.

Nadine Vogel: Oh, my gosh I don't even want to say taught a class published a book or wrote an article I don't know I just feel like there's something here.

Nadine Vogel: To a teachable moment for people to really understand the concept of expression and expressing with your hands beyond just what people will think of in terms of sign language so I'm sorry to derail a little bit Norma but it's like it just.

Nadine Vogel: Keeps coming back to me, as this is really important.

Norma: I agree.

DJ Hear No Evil: Yeah, yeah I definitely I definitely agree with that because everybody has a different way to show and  express their story. And not just to move their hands.

DJ Hear No Evil: There is one female who is blind. She’s from Mount Vernon too, but she’s blind. So she can tell her story.

DJ Hear No Evil: You know, a basketball player I think he didn’t graduate from high school yet , but he is hearing, but he’s playing with one arm.

DJ Hear No Evil: I can’t remember his exact name, but.

DJ Hear No Evil: He got it he got it, excited because everyone got it.

DJ Hear No Evil: So he plays with one arm and that’s amazing.

DJ Hear No Evil: You know what I mean, so everybody has a different kind of niche.

DJ Hear No Evil: That can show their talents.

DJ Hear No Evil: There’s no excuses for not doing.

DJ Hear No Evil:: Oh, I can’t do it, but no, we have the ability to do it.

Nadine Vogel: Right, right.  Absolutely I just said that's that's just so interesting Norma you know I feel like it's something we need to explore even further.

Nadine Vogel: Another time but I, this is an important concept.

Norma: Absolutely, the DJ industry, the DJ-ing industry is huge, I mean Beyonce sister Solange is a DJ was a DJ. Khalid there so many really, really.

Norma: Big name, DJs out there, that I didn't even realize there was so many and they do all these international type of gigs is that something that you aspire to be a part of that group.

DJ Hear No Evil: Oh yeah.

DJ Hear No Evil: every night.

DJ Hear No Evil: I mean, that’s one of my biggest goals. you know I mean my goal is to be one of the top DJ producer

DJ Hear No Evil: In the world. So like, it will be amazing for me to do it working up to get there, I mean, even though I’m well known, but at my status, I am still working to get there, but I have to find a way to get to where I need to be at. Right now, it’s all about who you know nowadays

DJ Hear No Evil: I when I say about who you know it’s about connecting, networking like you have to go out to talk to people and then meeting people letting them know about who you are and you never know who might get back to you.

DJ Hear No Evil: It could be one out of one million people walking to you and then they’re calling you, hey youneed to come to the big event.

DJ Hear No Evil: Oh, that would be amazing. Then going over there, and it starts there, and then you work your way up.

Nadine Vogel: So when you.

Nadine Vogel: So when you perform at the Grammy awards Okay, you know, Norma, you and I can say.

Nadine Vogel: Hey the Disabled Lives Matter podcast to the Grammys.

Nadine Vogel: Ha, ha, ha. One-stop shop.

Norma: Absolutely, absolutely. That is so cool.  Now you teach you teach sign language and have done that around the world really in different countries and in different places in the US to teach with the American sign language workshop and how does that work and do you still do it.

DJ Hear No Evil: So I’m not

DJ Hear No Evil: teaching A-S-L.

DJ Hear No Evil: Yet.  In the future I wouldn’t mind.

DJ Hear No Evil: What I do is I do motivational speaking so I talk to people about my life.

DJ Hear No Evil: I was teaching, but I was teaching about deaf history, so that is the difference.

DJ Hear No Evil: So I’m teaching them more about finger spinning, how to use a turntable along with sign-language, all of that. So that’s the difference.

DJ Hear No Evil: But would I like to teach people to learn A-S-L, absolutely. It would be nice to communicate with people in A-S-L so we can, so the reason I would want to teach them is so that we can combine into one world instead of separate worlds. Deaf World, Hearing world, no.  The need to be into one world.  That’s how we are going to improve our communications.

DJ Hear No Evil: So yeah I wouldn't mind a few people who want to know more about American Sign Language.

Nadine Vogel: So you know Norma, I'm thinking we should introduce him to the folks at Sign1News.

Norma: Absolutely, absolutely.

Nadine Vogel: They can do a story on him.

Norma: Absolutely, I will make sure that Karen knows about you and um.

Norma: I am thinking that would be something that can.

Norma: Definitely happen. Absolutely.

Nadine Vogel: Are you familiar I don't know if you're familiar with Sign1News, but it's a news station and front of camera behind camera everyone is deaf and it's all you know, like CNN type news and and they have amazing stories and you should be on there.

Nadine Vogel: We’re going to help you get to the Grammys.

DJ Hear No Evil: I mean, I don’t mind, I’m down for that. You know what I mean, I'm open minded like that, you know making an impact, you know.

Nadine Vogel: So I'm curious if, if, two things I have one question first, which is, if you could have a, if you could meet your younger self today if you got introduced to your 10 year old self.

Nadine Vogel: What would you tell him.

DJ Hear No Evil: wow.

DJ Hear No Evil: that’s a good question.

DJ Hear No Evil: I mean a very good question.

DJ Hear No Evil: I mean, if I meet my 10 year old myself, I’m I can’t tell myself everything because that would mess up the future.  But what I can tell is that he needs to stay focused. 

DJ Hear No Evil: Focused and work hard.

DJ Hear No Evil: Don’t get distracted.

DJ Hear No Evil: because when you get distracted you lose the passion.

DJ Hear No Evil: You’ll lose the focus for wherever we need to be at. I mean because I was a kid, I could have gotten into the bad things I mean I almost did I mean good thing is my grandfather talked to me and stopped me and said okay focus you know what I mean.

DJ Hear No Evil: So too will tell myself work hard.

DJ Hear No Evil: Stay focused. You know.

DJ Hear No Evil: Meet with the right people.

DJ Hear No Evil: Because getting mixed up with the wrong crowd will mess up your life and mess up your mindset. And everything that you dream about.

DJ Hear No Evil: That’s something I would tell my 10 year old self. Just like that.

Nadine Vogel: And I, and I guess your advice would be probably similar for an up and coming a younger DJ that you know someone that aspires to be you and to do what you're doing I presumed then the advice would be pretty much the same.

DJ Hear No Evil: Yeah, yeah, yeah most definitely. Most definitely.  I mean.

DJ Hear No Evil: It’s amazing because my life is very interesting, you know, even though after I graduate from college my life is interesting as a whole.

DJ Hear No Evil: So I’m able to do this, and I’m able to do that. Oh wow, so I thought about

DJ Hear No Evil: learning new experiences.

DJ Hear No Evil: And how you get better from that.

Norma: Absolutely.  So what did you major in in college What was your major.

DJ Hear No Evil: I graduated with a media-marketing and accounting I have two majors, I graduated with bachelor degrees, I have master certifications 

DJ Hear No Evil: So I have a bachelors and masters.

DJ Hear No Evil: yeah. Yeah.

Nadine Vogel: That's an interesting combination marketing and accounting.

Nadine Vogel: Usually the people in marketing was nothing to do with the numbers.

Nadine Vogel: And the people doing the numbers want nothing to do with marketing.

Norma: Exactly. That’s interesting.  I, I am one of those people who want nothing to do with the numbers.

Nadine Vogel: Right, right, me too, I know.

Nadine Vogel: But you know I it's an interesting combination, because, in part, that really helps you beyond beyond DJ running the business of DJ-ing.

Nadine Vogel: That really gives you some great background to be able to do that as well.

Nadine Vogel: Right. Yeah because.

DJ Hear No Evil: I would definitely like to be a hip hop mogul like Jay-z or Diddy, or Russell Simons,.

DJ Hear No Evil: So I can bring my deaf community out there.

DJ Hear No Evil: And help them to explain how to do it right. And then they can go ahead and do their own thing.

DJ Hear No Evil: While I’m pursuing my own thing as well.

Nadine Vogel: Right, right.

Nadine Vogel: Awesome, awesome, very cool.

Nadine Vogel: Wow Norma, This is like amazing.

Norma: Yeah I really enjoyed learning more about you DJ. What part of Brooklyn are you in. Or do you still live in Brooklyn.

DJ Hear No Evil: I live in Mount Vernon, New Rochelle.

DJ Hear No Evil: But I travel a lot.

DJ Hear No Evil: I tend to go D.C., Washington D.C, and then Atlanta.

DJ Hear No Evil: Texas, Florida, I travel a lot. Depends what kind of event I’m doing.

DJ Hear No Evil: BecauseI’m unable to say no that’s too much because I’d rather stay outside the comfort zone.

DJ Hear No Evil: You gotta be comfortable with being uncomfortable. 

Norma: that's right.

DJ Hear No Evil: So I’d rather strive a lot, and go outside.

DJ Hear No Evil: get some experience also expanding my brand.

DJ Hear No Evil: I just got back from Jamaica. Two months, what’s today, this is.

DJ Hear No Evil: March.

DJ Hear No Evil: I got back from Jamaica about. Four or five months ago.

Nadine Vogel: Ah.

DJ Hear No Evil: So I was DJ-ing in Jamaica, it was a nice experience.

Norma: Nice.

DJ Hear No Evil: So I DJ’ed there, I wouldn’t mind to DJ in.

DJ Hear No Evil: Europe.

DJ Hear No Evil: That’s where the big money comes in.

Norma: Yeah.

Nadine Vogel: Well okay. We’re going to have to keep talking because you know my company works with you know companies around disability and we have events in different parts of the world, and when we get finally get rid of Covid, hopefully, and we can go back to our in person events we just may be reaching out to you.

DJ Hear No Evil: So you have my email. Instagram or whatever.

DJ Hear No Evil: So you can reach out to me.

Nadine Vogel: Well, you know what let's let's do it let's close on that note, if someone is listening to this and it looking to book an amazing DJ how do they get in touch with you.

DJ Hear No Evil: So.

DJ Hear No Evil: If you want to reach out to me to DJ or as a motivational speaker, you can reach out to me on my Instagram or by email. So my Instagram is @djhearnoevil one more time, @djhearnoevil

DJ Hear No Evil: And my email is bookingdjhne@gmail.com.

Nadine Vogel: Okay.

DJ Hear No Evil: One more time bookingdjhne@gmail.com.

Norma: Okay, great.

Nadine Vogel: For all our listeners you heard it here.

Nadine Vogel: If you need a DJ, this is the guy to call or to email or however you want to get in touch with him.  Norma, thank you. Wasn’t this amazing.

Norma: Yeah, thank you so much, I really learned so much about the craft.

Norma: And looking forward to seeing you again very soon.

Nadine Vogel: Absolutely so to our listeners, I know you enjoyed this is much as we did, and we look forward to seeing you and speaking with you on another episode on our next episode.

Nadine Vogel: of Disabled Lives Matter more than a podcast, it is a movement and Norma, thank you so much, so we have Norma Stanley and Nadine Vogel till next time bye everybody.

DJ Hear No Evil: Thank you for having me.

Closing comment:  [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday.  Have a great week!

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