Disabled Lives Matter


May 27, 2021

Disabled Lives Matter

Season 1, Episode 13

Co-Hosts: Nadine Vogel & Norma Stanely

Guest: Bonnie St. John

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

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanely... yay! 

Nadine Vogel: Hello, hello everyone, this is Nadine Vogel your co-host of disabled lives matter, and of course I am with my co-host Norma.


Norma Stanely: Great. Hi everybody, it's been great to be here and I’m so excited about today's show.


Nadine Vogel: Me to, because we have, and let me, let me just say this, we have what others have said, one of the most five, no, one of the five most inspiring women in America and this woman I’ve known a really long time, and let me just tell you ditto ditto ditto so with that Bonnie St. John. Hey Bonnie, how are you.


Bonnie St. John: I’m great thank you what a great topic.


Nadine Vogel: I said an important topic, and one that we can't do without you so let's just get right into it um you had a I think it was your right leg amputated at age five.


Bonnie St. John: That's right, it was a birth defect, so the growth was stunted before that I had braces, so I never had a normal leg, I was in and out of hospitals from the time I was born, you know, up until I was 18 I had surgeries and spent months at a time in the hospital so yeah.


Nadine Vogel: So, let's just start right with a bang right. That happens yet you've become you became the first African American ever to win medals in winter Olympic competition, you took home, I believe, a silver and two bronze medals in the 84 winter Paralympics. How the heck, oh see look hey isn’t that cool.


Bonnie St. John: So, for those of you who are listening I’m waving my medals at them.


Nadine Vogel: Waving her metals and if I could reach and grab them I would but since I can’t, so Bonnie how did that happen, how do you go from being a five-year-old who has your leg amputated to this medal winning athletes.


Bonnie St. John: So, I’m black and there weren't a lot of black skiers and I had one leg, but I went into sports, which is a lot more normal now than it was back when I was doing it, which was a few decades ago. It was not a normal thing, but one of the hardest parts about that whole story is my family had no money you know it's hard to ski on one leg is really hard to see with no money. I had to raise money, I had to my end we were in San Diego my mother stayed in San Diego the whole time I had to find a way to get to Vermont and to find a way to get to Colorado. I spent a couple of summers on a glacier in Oregon. I had to find my own apartments my own airline tickets the money you know it's like if you are going into sports as a boy and football and you're good you're going to get recruited you're going to get taken places you're going to nobody's recruiting one legged black skiers in San Diego. I had to find my own resources and get my own self there.

Norma Stanely: wow.


Bonnie St. John: It’s a crazy story, isn’t it Norma. It’s a lunatic story.


Norma Stanely: What a blessing that you were able to find a gift, how did you know that you would be a skier did you always have a goal to ski is that something just came about because you just decided to try it.


Bonnie St. John: So, a friend of mine in high school Barbara Warmat invited me to go skiing with her family over Christmas vacation she gave me a coupon stick notebook paper and threw up a coupon for one week of skiing. And now, so she invited me, but I needed special equipment, so I had seen Teddy Kennedy Jr on TV skiing and he had those little outriggers right, so I knew I needed those, and I didn't have any winter clothes I’m from San Diego I didn't even have mittens you know nothing. And so, I got a pair of Ski pants from the Salvation Army. Because I again, I had no money and I, and they didn't have a jacket that fit me, but I found one at Kmart in the same color as the pants which was a scary color. And I hunted around for the equipment, but I finally ended up borrowing it from the President of a club of amputees that skied so I had to be resourceful I had to be very entrepreneurial. To be able to even go skiing and then, when I went with barb poor barb you know she could have skied anywhere on the mountain right, but I was on the bunny hill falling and falling and falling and falling I wasn't even moving anywhere.


Norma Stanely: Wow. That’s tenacity.


Bonnie St. John: It took me three days, so you have to understand anybody who's listening if you've been skiing you know you snowplow right, they tell the kids pizza pie right it's a snowplow when you need to slow down well if you're on one ski you can't pizza pie, there ain’t no pizza pie for one leg. So, I, so I had to learn how to turn you know do a hockey stuff to be able to slow down it took me three days to learn how to do that because I couldn't pizza pie.  So for the first three days I couldn't stop I was on the bunny he'll just crashing into men, women and children.


Nadine Vogel: You didn't discriminate who you ran into.


Bonnie St. John: No. There was this one woman, I remember I slammed into her and knocked her down and she's looking up at me and she says, I only have one leg, and she says I’m sorry.


Norma Stanely: She got in your way.


Bonnie St. John: She felt bad.


Nadine Vogel: That's right well bonnie you know it's interesting because we were talking in a in a previous show about role models. And that you know the children today who have disabilities, whether they are born with them, they acquire them, they need role models. And, and you are that role model right because you show that nothing is impossible and to that end, you know for those listening so not only is Bonnie you know, but an award also winning medal winning skier. She served as the White House director of National Economic Council during the Clinton administration; you had a Rhodes scholarship I think to Oxford while you were going to school at Harvard, so you know you, you're such an underachiever I just.


Bonnie St. John: it's funny it's funny you say that because I went back to the hospital, where I had my leg amputated to talk to some of the kids that were in the hospital, I told them all these stories like what you're saying Olympic medals Harvard and stuff. And at the end of my speech, there was a mother there who was with her son and he was badly burned over 90% of his body. And she said to me that her question to me was yes all that's really great, but will my son lead a normal life. And I kind of froze up in that moment, because I, you know I just like I didn't know what to say. Will my son live a normal life, I finally blurted out no, aim higher, aim higher. And so, you know I didn't get a normal life, but I did extraordinary things and I think as a disabled child, you often just wish and hope for a normal life, I tried so hard to be like the other kids and I really confused in my head the difference between normal and perfect.


Norma Stanely: Yes.


Bonnie St. John: I thought that normal kids are perfect so, for example, like kicking a soccer ball. I was kicking a soccer ball in the backyard with my brother and I, and I finally got so frustrated I said Wayne I can't, I can't make the ball go where I want you to have a rubber foot, because I stand on my real foot and I could kick with my fake foot and I said I can't my fake foot can't control the ball I don't I can't control where it's going to go this is this is hopeless, and he looked at me and he said everybody has trouble controlling where the ball goes. And so, I often confused normal with perfect. I thought, people with two feet can make the ball go wherever they want it to. Well, no it's not like that, so there were so many things like that in my head that I thought normal people were perfect and normal is not perfect normal is way overrated you know so for disabled people aspiring to be normal is crazy don't aspire to be normal, be great.


Norma Stanely: Amen.


Nadine Vogel: Well, it's all about perspective.


Norma Stanely: That's right.


Nadine Vogel: It’s about perspective and how your perspective is or changes, and you know Norma, like me, you know we have adult children with disabilities, and you know our perspectives are different because of our roles in our kids’ lives different than you know our daughters’ lives. And I think that it's something that you know it's about making shift in perception and making shifts into your point, what's acceptable what's normal what's better than what's typical you know words matter.


Norma Stanely: Yes.


Nadine Vogel: Words create images, and we act on those images. So, bonnie you know, one of the things that you do fast forward a little bit today is you're a leadership expert. And you train leaders in corporations and other organizations, so when you're doing that, how do you convey to them how these words matter, especially as leaders.


Bonnie St. John: And are you thinking about words about people with disabilities or.


Nadine Vogel: It could be anything could be anything.


Bonnie St. John: it's funny to Norma and I are both black to and the word for black has changed so much over time right, we were negro we were colored we were Afro American, which is a hairstyle.


Norma Stanely: Absolutely.


Bonnie St. John: Then it went to African American which was kind of interesting because then it's like you say Polish American or Chinese American it was like oh yeah let's say where you're where you're from on the planet, that makes sense, but then that stopped working because corporations that have international people kept saying African American.


Norma Stanely: Right, I’m from the Caribbean.


Bonnie St. John: So yeah, so we went kind of back to basic black.


Norma Stanely: That was the same thing with the disability community because Special Needs was something that everybody said then differently abled.


Bonnie St. John: Back to disability. I went to the UAE and when I landed, they have a term oh now I’m not gonna be able to remember when in the airport there's a special line, and it has the picture of the symbol, with the wheelchair, but it says it says something different. Do you remember what it says Nadine, It says like people with special abilities or something.


Nadine Vogel: Yeah, it did, they have one in India as well same the same thing.


Bonnie St. John: And I loved it and I took a picture of it and I sent it to my friends who are who are in the disability community and they hated it.


Nadine Vogel: Right.


Bonnie St. John: And they said, you know that's like a euphemism that's like you know and I’m plus, I think, because we've worked so hard to imbue the word disability with power and interest in diversity it's sort of like don't take that away from us we've worked really hard to empower that word.


Nadine Vogel: Absolutely, so you know if you're talking to business leaders and they are interested in maybe hiring individuals with disabilities or they have individuals with disabilities in the workplace, which we know they do, even if they think they don't. And they're wondering how best to communicate at a level that's appropriate and nondiscriminatory and then, when I say nondiscriminatory I don't mean from a compliance standpoint but from an inclusive standpoint, what is it Bonnie that you would share with them.


Bonnie St. John: I guess, I guess, one of the things that is good is, if you have ERGs to start an ERG or affinity groups, whatever you call them business resource groups to start one for people with disabilities. And you know, the etiquette is to say, people with disabilities, not disabled people but because we're you wouldn't say a cancer, you know you say a person with cancer right so it's a person with a disability. So, if you can start a group an affinity group for that you can get them to start discussing what words do you want to use what feels comfortable in our culture and so they let them be self-determining. Now, what I’ve heard from a lot of companies, is they like these groups to sort of spontaneously start somebody comes in and says, I want to start the group, and then they say we don't make group start, we just support what's there and often the disability group never starts. And it could be because people are covering it up people don't feel comfortable so you're sort of asking for the chicken or the egg well until a group forms and people get more comfortable nobody wants to raise their hand and say they have a disability and everybody's hiding it so waiting, whereas like that policy might work great for the women's group let's get the women to start it. But it's not necessarily going to work well for the people with disabilities group, you may need to go out and make sure it starts and that could be a comment on your culture to if people don't even feel comfortable enough in your culture to start the group to say, well, you better start the group that's not really a good way to address it.


Nadine Vogel: Absolutely, and I think that you know that that goes back to, and we have these conversations about corporate culture and people's comfort right with just difference in general and leaders have to be comfortable with difference, including Oh, by the way, leaders with disabilities, which we could have right it doesn't matter. Right, the person with the disability is not always the entry level person. We have to go to commercial break, but what I want to do when we come back Bonnie, I want to talk a little bit about and go back to the Olympics little bit and talk about the museum the Olympic Paralympic museum, because I think that's pretty cool and I’m not sure if enough people know about this yet.


Norma Stanely: I certainly didn't, I would love to hear more about it.


Nadine Vogel: Okay, so, ladies and gentlemen, we'll be back in just a minute with St. John




Nadine Vogel: Well, hello everyone and welcome back to disabled lives matter, not just a podcast but a movement. Norma and I are here today with Bonnie St john and having an amazing conversation about so many different topics. Bonnie let's talk a little bit about this, what I think most people don't know this new Olympic Paralympic museum.


Bonnie St. John: So, it's in Colorado Springs and it is really exciting what what's kind of exciting to me, is it is the first time we've had an Olympic Museum in the US, so it is, it is showing all of the history of the Olympics in the US and our Olympic teams and athletes and everything. But it was created as an Olympic and Paralympic museum. And the US Olympic Committee actually rebranded themselves as the US Olympic and Paralympic Committee and the museum is yeah and it's so funny, I’m so for years it's been the usoc it's hard for me to say the USO PC. But I love that the museum never got built until that real alignment had happened, and so they're not retrofitting Paralympians into the museum It is everything is just done that way and there's some really great multimedia stuff too like there's a segment where you can run a race against an Olympian so it's like you're in a you get in a starting block and you run, and they have a video of the Olympian or Para Olympian an literally run against you.


Norma Stanely: That’s awesome.


Bonnie St. John: I mean there's so much cool stuff there, so my joy, the fun part for me is I yeah, I got to be one of the voices in the museum when you walk around and like you push a button and it tells you about the exhibit some of the exhibits, you're going to hear my voice so it's me.


Norma Stanely: Very cool.


Bonnie St. John: The other person who does it so it's half me and half this other person who is john neighbor he's male and female he's white I’m black he's like six foot seven and I’m five to. Because he's a swimmer are tall because they can reach the other end of the pool faster right and he's a summer athlete and I’m a winter athlete so we're like as different as you can be and so the diversity in that museum is just incredible. And you get to hear the different voices yeah, I would totally encourage you to go.


Norma Stanely: Definitely want to check that out.


Nadine Vogel: Yeah, what I love about it as you're describing it is while the diversity is amazing what I’m taking away from it is the inclusion.


Bonnie St. John: Inclusion Oh, and that means, that's built into everything so as you're going through the museum to, the way you, you can I guess you can listen, or you can do Braille on the exhibit everything's very inclusive in the way it's designed it’s in what do you call that inclusive design.


Norma Stanely: Universal Design.


Bonnie St. John: Universal Design, thank you it's so again because they only opened it unfortunately, they opened it during the middle of the pandemic I have not actually been there myself yet, but um but it's because it's done now it's very now so it's very inclusive it's universal design it's so great.


Nadine Vogel: And Bonnie you are telling us about a documentary on Netflix I think it’s called rising.


Bonnie St. John: Rising phoenix yeah so go on Netflix and watch rising phoenix and it's a documentary about the Paralympics and they feature several athletes and I remember one of them is a Slavic I don't know if she's Russian who immigrated here and she's dispensing but she's both of her arms are somewhat amputated and she sits in a wheelchair and does fencing But she is stunningly beautiful and she's scarred on her face too, but beautiful the way and you realize that beauty is about the way you carry yourself. Because she carries herself like I am the most badass beautiful woman you have ever seen. And then there's a black man who was in a war zone that he grew up in and has a disability and he runs track and the photography in this thing is so incredible they show him doing a long jump in the sand coming up in slow motion and it's just it's luscious photography it's a great story, and then they do some background things where they go into the start of the Paralympics and how that got going and what some of the history is and it's just a great I watched it with my whole family, and you know, even though I’ve been in Paralympics we all learned a lot to. I highly recommend rising senior trip camp, we were talking about kripke camp to, great piece of information about the history of some of the people who became leaders in the disability rights movement. And sort of how they got empowered as children going to these camps, and I think that opportunity to have exposure when you're a teenager to other people with disabilities is really important. I started skiing at about 15 and that was the first time I was around a lot of people with disabilities and as you're forming your identity and your sense of self-worth and all that that was really important to me and those memories came back watching that that you know is that for them, they were going to camp and doing sports, for me, I was going skiing and doing sports and meeting people with all kinds of disabilities arms legs wheelchairs it was very empowering.


Nadine Vogel: We definitely have to go back and watch.


Bonnie St. John: We're giving people homework here.


Nadine Vogel: I know, I know, but it's important homework. So, you know, in the time we have left bonnie I want to also touch on and go back to what I said before that. You know you travel the globe you're a keynote speaker business owner you're an author of seven books on you train as a leadership expert with blue you have your company's blue circle leadership. You know what's interesting for me is some of the folks is that we talked to they think you know I have disabilities and therefore I work in the field of disability. You have disabilities but you don't really work in the field of disability, which I think illustrates a really important point. That just because you have a disability, does not mean that's where you have to do your work and whether it's nonprofit for profit, you are an amazing contributor to today's corporate leaders talk to us a little bit about that, please.


Bonnie St. John: Thank you and I agree with you and I celebrate the people with disabilities who work in the field of disability, we need you there too. But you're right we don't have to be limited to that we have lots of ways to contribute, and so our company blue circle leadership does leadership development. And our sweet spot that we were we really went deep into was multicultural women in corporate America. So about five years ago, we started delivering a ot of virtual leadership training programs for people for multicultural women. And we expanded on that that is really grown and now we have programs that have multicultural men in them, we have programs, we have one now that has its for ERG leaders, so we have LGBT we have people with disabilities, we have men, women veterans everything, so it but being able to deliver virtual leadership development, especially during the pandemic became a really important option for people and we were really good at it, because we had been doing it for years. It allows you to provide customized training. Oh, another thing we do is leadership development for women in tech, you know, so we do we do very specialized things to address special needs, special needs and people and leadership and so getting to do that is really gratifying and we've had to push the barriers on a lot of technology I’ve had to hire a lot of programmers. We hire people who facilitators in addition to me so accessing a lot of experts in different areas to package together, something that really helps companies to grow and leverage their people.


Nadine Vogel: That’s so important that Norma and I have even had conversations about you know, helping leaders lead. And that’s what you do.


Bonnie St. John: Actually, what's interesting too is during this whole year of the pandemic and black lives matter. You know, first of all, the virtual became very important because we were all in lockdown and then during the black lives matter social justice movement, the fact that we were really equipping minorities to be successful became an important part of the conversation. And we had alumni Association for everybody who's been through our programs and the alumni association during 2020 started doing these safe space conversations because we were finding our grads were really getting stressed during the social justice movement because their companies were shoving them out front like oh here you explained it or hear you. And they were in pain, you know, and we had a lot going on during that so we were giving them support so that they could help their companies to meet the challenge and so yeah, it's been really rewarding work that we get to do.


Nadine Vogel: Well and I think that you know, your most recent book right micro resilience, you know you talk about how you can make small changes small shifts that will have a major impact on your focus on your energy and that's something I think we all needed before the pandemic, but certainly while we're in it and beyond, more than ever, so these fabulous books.


Bonnie St. John: Thank you yeah, I’ve been doing a lot of speeches on micro resilience during the pandemic and it’s very evidence-based hacks so really small hacks that you can do that help your brain to be less exhausted, I know about you, but I’ve had so much brain fog in this whole quarantine pandemic thing and helping yourself to be have more energy and to be able to make better decisions. And to be rooted in purpose, one of the ways to stay resilient is to stay rooted in purpose and you know it's an easy thing to say, is yeah, I have a strong sense of purpose but how do you let purpose give you energy at three in the afternoon on a Tuesday when you're tired. So, giving people hacks operation a lot of hacks that you can take action on that help you to really draw on your resilience and increase your resilience.


Norma Stanely: Awesome I look forward to reading that book.


Nadine Vogel: Well, Norma, I don't think you should let it get away with just that I think you have to share one of those hacks with us and our listeners.


Bonnie St. John: Gosh there's a lot of fun hacks what one of them, and this one is so easy, you can do it with your team at work, but you can do with your family you do with your kids is to have a first aid kit for your attitude. You can make your own first aid kit, and this is something you know you can do as a team building event. And to think about you know what is it that would help you turn your attitude around and people put chocolate in our you can put in you know, inspiring pictures or quotes or something like that. I have a note that my mother gave me that says cherish yourself and she had that old fashioned penmanship. My mother passed away a number of years ago, but it says cherish yourself and my mother, she had to go to segregated schools, so she lived she grew up in Florida, and she had to walk past the beautiful school for white kids and go another mile to the rundown school with no textbooks for black kids. So, I know I get chills when I say this, she went on to get her PhD and to become an educator and to turn around some of the ghetto schools that that were you know not working for kids. And so, it was like and she said she was interviewed in many newspapers and she said it's like getting to go back to that rundown school, I was forced to go to and make it better. And so, when I see that note that says cherish yourself, you know it's like whatever you're dealing with today, you can kind of put that in perspective and say so, what can you put in your first aid kit that would help you to get perspective on you know okay, so my computer is having problems today, I can do it, I can deal with that right.


Nadine Vogel: So, you know I went to college in the south, so when you said that I was thinking well, maybe like a nice jug of some southern moonshine.


Bonnie St. John: Put it in perspective, you know, this is my first aid kit, Emergency moonshine.


Nadine Vogel: I gotta take a picture and send it to you.


Bonnie St. John: What would you put in your first aid kit, Norma.


Norma Stanely: You know um I don't know probably like you say some quotes I love quotes food I’m a foodie something that I love to eat I don't know I really don't know.


Bonnie St. John: My faith is important to me to and fun fact Nadine we were talking about Barbara Warmath who invited me to go skiing for the first time. One of the side benefits gifts of the pandemic is I’ve been going to church with Barbara so she lives in Chattanooga Tennessee but she's going to virtual church in North Carolina. So she invited me to go to the same so we're going to virtual church services together this wonderful church that has really interesting people and I get to see Barbara Warmath on a Sunday.


Nadine Vogel: Very cool and I, you know and going back to you know the note from your mom I mean it sounds like you know what she's saying is it doesn't matter what happens to you in life it's what you do with it. What you make of it.


Norma Stanely: Always.


Nadine Vogel: How you believe in yourself that really matters and.


Bonnie St. John: And she really struggled with it too it's not like she was just like Pollyanna like okay we're positive you know. If we're going to get real here, she was actually suicidal at various points, you know she had a lot of depression, but she fought it and struggled to stay positive and so I’m sorry I interrupted you.


Norma Stanely: Look what she did with you and help you then become what you became.


Nadine Vogel: Absolutely, you know and it's you know it's funny I as you were saying about you love quotes and so forth, one of the things that I never thought of it is my first aid kit but It has been in my wallet since my older daughter, since the second day of her birth and it's a poem called welcome to Holland written by Emily Pearl Kinsley she was a writer on sesame street when her son was born severely disabled. And my daughter with Gretchen was in the NICU for three months, and they assigned you know, a, I guess, a call it like a peer mentor someone who went through this and she handed me that poem and it had stayed in my wallet. And I share it I copy it is okay Emily gave you permission to put it in like gazillions of places thankfully. And but at the end of the day, what it is, is that you know you plan to the trip to Italy. Your child's born with disabilities, you find yourself in Holland you can't ever go to Italy, and your grief with that you can't but what you learn as a Holland is a beautiful place. Windmills and tulips and you really come to appreciate it and I probably put that poem at least once a day, here we are almost 30 years after she was born.


Norma Stanely: I’ll have you share that at my Mother’s Day event.

Nadine Vogel: So, Bonnie, oh my gosh you know I could talk to you for ever and ever and ever, and so we will have to have you back so we can talk more, but I think that you so clearly illustrate the purpose that we have here with this podcast which is disabled lives matter.


Bonnie St. John: Thank you, thank you for doing this.


Nadine Vogel: For helping us make us this a movement and for all our listeners take to heart everything Bonnie said, because you too can make a difference whether for yourself a family member or friend a Coworker, because disabled lives do matter.

Norma Stanely: Absolutely.


Nadine Vogel: So, Norma, take us out.  


Norma Stanely: it's been another great show thank you guys and we look forward to talking with you again very soon.


Bonnie St. John: This was great you guys, bye.


Norma Stanely: Thank you talk to you soon.


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May 20, 2021

Disabled Lives Matter

Season 1, Episode 12

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Chris Downey

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

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

Nadine Vogel: Hello everybody, welcome to another amazing episode of disabled lives matter, this podcast is not just a podcast but rather a movement to show that people with disabilities do matter and joining me is my co-host, Norma Stanley.


NORMA STANLEY: Hi everybody.


Nadine Vogel: Hey Norma how's it going.


NORMA STANLEY: It’s been a beautiful day I hope as well, where you are.


Nadine Vogel: Absolutely, absolutely and we are joined today by Chris Downey, Chris is the President of architecture for the Blind, Welcome Chris.


Chris Downey: Hi there. Hey, Nadine. Hey, Norma


NORMA STANLEY: Hi, how are you.

Chris Downey: Doing great


Nadine Vogel: I am so glad to have you join us, so you have been an architect, I think, for over 30 years. You probably started when you were like I don't know five.


Chris Downey: But yes, I got my first degree in architecture in the beginning of well graduated in 1984 and I’ve been working ever since it's taken a break, to go back to Grad school but it's been a non-stop Hall, and in working architecture and studying architecture since 1980.


Nadine Vogel: Now, if I recall correctly, you lost your sight in 2008.


Chris Downey: Got it yeah 2008.


Nadine Vogel: So please tell us you know a little bit about that, and your background and how you transitioned as an architect, even without site, because I think most folks if they're not familiar with blindness or visual impairments are probably wondering how the heck are you doing that.


Chris Downey: Yeah, I was kind of wondering that at first to it was a situation that was not expected, it was the unintended consequences of surgery. And I had not given it any thought and even as the as my sight, it failed started failing two days after the surgery and then next time I woke up, it was all gone I still didn't think that you know the blindness would stick that would be my new normal and it wasn't until a week and a half later that the doctors said there's nothing more they can do and it wasn't until then, that I was like oh, I guess that's it. And, and so, for the first time that day I started really dealing with it. And, and to make matters worse, within six hours, I was visited the hospital room by a social worker who came by to do deal with all the logistical things of registering of the state and social security all these things you do, and our opening sort of introduction said, and I see by your chart that you're an architect, so we can talk about career alternatives.


Nadine Vogel: Oh, my gosh.


Chris Downey: Yeah, so it was like it hadn't even been a day, not even half a day and I already was being presented with you.


NORMA STANLEY: You can’t do that anymore.


Chris Downey: Yeah, so that got my attention. That was disturbing and started like on any level, why on earth would anybody say that so quickly. Especially someone sent there to help out.


Nadine Vogel: Right exactly a little more training perhaps.


Chris Downey: Yeah, yeah but you know, but it was an interesting situation where, where I had recently sold the shares of my partnership to my partner and went to work as a managing director of a sort of startup and sort of architectural space doing prefabricated modular homes that were green sustainable really exciting work and I was to run their architectural office for that work and I’d only been there for less than three months, so the job description was very much still in mind, I could just go down the list that night of all of the job, my duties job description, and I could just check off the box, I could do this kind of this like it oh yeah I don't know about that one. Or probably, but it might take some time to get there, and so I got through that list it was like I can do 60-70% of what not description and then there was a handful of things that I thought I could do, but was going to need some training and some others I was like I have no idea how that's going to happen, but that gave me the confidence to, and partially with the by then I already had 20 years of experience.


Nadine Vogel: Right.


Chris Downey: So, I had a lot to build on, and so it was easier to see how I could stay engaged, to me the bigger question was how to be fully engaged and in a meaningful way that sort of kept me and sort of the creative side you know there's a lot of texts there's a lot of information, data management, all sorts of things that are tech space, but it was a creative thing of how to do that, that was, you know what about that, that was a big part of my passion for being an architect, so that was the critical question.




Nadine Vogel: So, there’s two parts to this right, so one is how you're suddenly thrown into this world and trying to figure out how to make this work, but how about this new employer of yours. What was their reaction and response.


Chris Downey: Well, you know it was, many would say you know losing your sight as an architect would be like the worst thing ever and I have friends that are architects, would say that to me when they would come to visit. But then when I really get down you think about it, you know they're architects by their personality by their traits characteristics by their profession that's a creative profession in the creative professions you value different perspectives different ways of looking at things in fact you're really kind of trained to tackle those to seek out those alternative ways of looking at things so in many ways it felt like, and I think they sensed and I think that the founder of the company, she was like one of the first one out of the box saying you're going to get this you know I’ve got all the confidence in the world that you can take this on and not just cope, but really do well and find sort of meaningful things within the profession and so she was she was supportive the office was very supportive and I wanted to you know they were very it's an energetic very optimistic opportunistic place, and so I was lucky in that regard to have that.



Nadine Vogel: I'm glad she wasn't you know, like the social worker.


Chris Downey: Yeah, that would’ve been very different.


Nadine Vogel: Very different exactly, and you know it's funny when you say about you know the creative part of this because I’m in the process of building a house right now and it's under the second or third house that I’ve built in my adult life and you’re right I rely on the architect, not just took to drop those blueprints but I rely on the architect for perspective yeah on all kinds of things and that really does reflect and revolve that creative process, so I think that that's interesting and think out of the box, I think that that's probably the biggest thing I rely on him for. So today, I believe that your specialty is universal design.


Chris Downey: Yes, universal design and I sort of expand that beyond to sort of user experience design. For the blind and visually impaired well maybe there there's being out in California, in the San Francisco Bay area I’m sort of surrounded by technology. And there in technology there's a lot of interest in user experience design and which I found kind of curious because an architecture it's all about in theory it's all about the people occupying the space occupying the building, the city, whatever it is. And it's all about that human inhabitation of the space and architecture had been teaching that a lot was big part of the profession in the in the 70s 60s and 70s and we had sort of drifted away from that and, to the point where it just really wasn't a major conversation in in the schools and in the profession and so much of it was built on the image, you know picture in the magazine the view from the street, whatever it was that image and, and so it really moved away from, whereas in technology they were really embracing that sort of human experience the user experience within the technology, the devices and not that they're perfect but there there's like major. All the major technology companies have you know entire departments in really, really powerful investment in people and people with disabilities. In that space really exploring it and trying to improve upon the experience of the broad spectrum of people that would engage in that technology and that device whatever and so yeah, I it's sort of a nod to them it's like the lesson, okay, they took it that baton architects, we need to take it on and take it back or take it with them and really sort of pursue those same things and part of it is theirs in universal design or thinking of it is inclusive design yeah that is really the critical thing it's about really trying. And I, these days I tend to prefer talking about is inclusive design about really including everyone within the space because it's not sometimes it's not that one thing one solution works for everybody. If you think about the high low drinking fountain well that's the perfect example you know, there are those that need to roll up to the lower drinking fountain or are shorter stature and that's the right size if that's all that was there myself if I’m you know I’m six foot four inches tall, if I have a bad back a moment or it's in a got a weird tweak that day I’m not going to be able to bend down that low to get to the drinking fountain so that's why they have the high low drinking fountains so. In user experience design yeah, I’m really trying to focus in on sort of the different user experiences, but through that lens of an inclusive design trying to find ways to really include the greatest broadest spectrum of people in the users within their environment.


Nadine Vogel: No, I think it makes a lot of sense, Norma, go ahead.


NORMA STANLEY: I know I love this because that's something I’ve always wondered about you know for real estate investors and people in developing you know complexes I know, even with the you know the active senior type of developments they have coming up for the aging population, but are they including the opportunities for people with disabilities to be able to access places like that I don't see enough of that happening and I’m really excited about what you're talking about in terms of universal design because that to me is like a really great market to really build on to use the word.


Chris Downey: And it's funny even within that market there's a lot of if it's handled well, it's in all in terms of compliance with accessibility regulations which. You know oftentimes a developer, or even an architect might think of that is like the gold standard within the disability community yet that's really that's the floor, yeah.


Nadine Vogel: Right, exactly.


Chris Downey: And that's in many cases, if you think about a senior living Center Assisted Living Center any number of places that simply is not enough. Right, that's just that's just keeping you out of the courts.


Nadine Vogel: Right, exactly, and you know it's funny we're so I meant to a building a home, and we have put an elevator in the home and there's no one in my family right now that requires an elevator, but I can have a friend that comes over next week, that would require an elevator. And even the island in my kitchen, we want to make we wanted to make sure that you could pass through on either side, it was enough room. For someone who perhaps uses a wheelchair or someone, perhaps it just is walking with a cane or a Walker and has a caregiver walking side by side with because you know I’m not getting any younger I like to think I am but I’m not and you know this could it could be me, that means that or it could be a friend or a family member whom ever, and so I have a concern about this, you know companies or professionals managing to the bottom. Managing for compliance the check the box and that's why I’m so glad you know, Chris that you're talking about inclusive design and variance because everybody talks about being inclusive I Norma knows, I have a saying that you know diversity is about you know, inviting someone to your party inclusion is asking them to dance.


Chris Downey: Right.


Nadine Vogel: Everybody talks about it, but I’m not sure they always know what that means, especially in your industry.


Chris Downey: Absolutely and you know and full disclosure I didn't have a full appreciation of it before I lost my sight and the disability community and got to really experience it from a different side and I would like to think that most architects most developers most planners would prefer to kind of learn that and get a sense of it, rather than having to experience it personal. You know there's something to learn it and I think that's where having that inclusive it, you know, to me, one of the biggest challenges I like to put out to the architectural profession is to encourage, and there's a lot of push for diversity within the profession and that's been focused on diversity ethnic diversity racial diversity gender diversity and Lord knows, we need more diversity across all those things in the profession, but also within sort of the people with disabilities, because you're the best teacher is that person next to you, and they are far too many architects. In this world that don't have people with disabilities in their office it's not part of their lived experience.


Nadine Vogel: Right absolutely well we are just at that time for commercial break so just stay tuned and for our listeners will be back in just a minute with Chris Downey and hearing more about inclusive design and user experience, Norma, we'll see you in a minute.


COMMERCIAL BREAK: Thursday, May 20, 2021 is global accessibility awareness day. The purpose of global accessibility awareness day is to get everyone talking thinking and learning about digital access and inclusion and the more than 1 billion people with a disability. Springboard understands this, and while many are interested in making their website and Internet sites accessible to candidates employees and customers with disabilities you’re either, one, not sure how or where to begin, two, concerned that you don’t have the in-house expertise to support the work or three, fear that the process is quite costly. This is when springboard comes to the rescue. We have a dedicated team that focuses solely on digital accessibility and usability and our experts can guide you on how and where to get started and can offer options to fit all budgets.  to learn more contact us today at info@consultspringboard.com or visit our website at www.consultspringboard.com


NORMA STANLEY: All right, well you know I wanted to ask you, Chris this whole situation you know, like you said, the floor is just a basic thing that that that Ada, you know, requires people to do, but when you're talking about potential students and people who wanted to go into architecture, what would you recommend them to study, what would you recommend them to do to be become part of the industry that you're in and architectural firms who might want to hire them what would you say, would be a place where they can all come together and make something happen.


Chris Downey: Well, in many ways for tackle that right, right from the heart go for the juggler. For the creative space, that's what makes their world spin and gets them excited and, within that creative space the, way too often the thought is that these regulations, this different way of approaching it is limitation within that creative space. And I’d like to open it up to think about no it's actually about releasing the creative space bringing more people into the discussion different ways of looking at it and also different ways of imagining the space and thinking about things in a different way and and I actually had an opportunity, a few years ago, a couple years ago to participate in a program that was sort of spearheaded and the idea came from the dean of the bartlett school of architecture in London. He was curious about what the profession had been missing, by the fact that they had never had a student that was blind. And it just not been part of the profession and not been part of their academics. And he wasn't thinking about how to open up the profession to the blind per se, but more what are they missing. From the understanding of architecture from the creation of architecture, because it had excluded that perspective from that creative process, so I really think that's a remarkable position. And something, a position that I think more and more schools need to think about in terms of who's not at our table who's not sitting at our desk who's not sitting there in our in our design juries in the studios and what are we missing by not having that voice, what are we going to do about it.


Nadine Vogel: Right, that's probably the more important part right what are we gonna do about it, and what should they be doing.


Chris Downey: Yeah, so there's a lot of effort, like, I said to diversify, but this has to be part of that diversification awareness and strategy of reaching out to people and I'm sort of life. Sometimes I get asked the question of you know I’ve I had 20 years of experience, two degrees in architecture was a licensed architect before I lost my sight now about a young student who's blind that wants to go into architecture, what about them. And you know that's it's a really good question and it asks a lot of the professors it throws them deep into they're uncomfortable which is the creative space, you know when you have to be really creative it's because you're uncomfortable because where you are isn't quite right because they need to really solve something. So, here's a different way of thinking about architecture, here's a different you know require different way of presenting it talked about it, he didn't just throw an image up on us on a screen and then talk about it is if everybody understands it. And so, how do you communicate that, how do you how do you have those conversations but it’s a really. You know, by putting it into the creative space and getting them to think more broadly about the profession and about who they're designing for what's it about it's not if all it is about designing the privilege few or you know pretty privileged norm, or the average what's thought to be the average condition. Then that's a bit of a fallacy and that's something I sort of grown to really appreciate through having lost my sight. Is that you know it's It is like having a disability, having that kind of see change in your life that's basically like that's like a true essential confirmation of the human experience. That affirms our humanity and through that there's so much to gain and to offer, so it really needs to broaden the way architects are thinking about space who's inhabiting who's using who's benefiting from him and not how to accommodate them right to really include them, as you said, you know how to yeah it's not enough to just go to the party or open the door it's how do you get in there and dance and just be like everybody else and another way I like to think about is something that I came across in the, of all things, disability awareness merit badge handbook I was leading for my son's scout troop in there, it said that a person with a with a disability and they could question some of the language. I’ll excuse that, but I think the point is worthwhile, you know, a person with a disability isn't Is you know defines it a person with different conditions, but that that person isn't handicapped until a barrier is put in their way. Absolutely and to with a couple things that come from that. One is it's like the idea, the question then is well who puts those barriers there we offer those barriers it's architects it's planners it's developers it's inspectors that look the other way, you know it's any number of things. But also, most importantly, it puts the responsibility on architects and it's something I actually had psychiatrist once talk to me about architects and he said, you know in our training we get license we, we have to part of the oath we take the requirement we follow is to advocate for our patients and ours. In the people do architects to take over the responsibility of advocate advocating for their users, I never heard that before. Not part of the certification that's not part of being a licensed architect you look out for the health, safety and welfare, but to advocate for the you know the broadest range of users of people that hadn't least the hadn't been presented to me.


NORMA STANLEY: Right, that's so awesome and tell you the truth, that goes across all industries.


Chris Downey: Yeah.


Nadine Vogel: Absolutely, because if not for my architect my builder my doctor my whoever advocating on my behalf my understanding, my unique needs then what's the output or outcome going to look like and I think to, and you know, Chris you're a perfect example of this is that the disability community is one of those private clubs that anyone can join at any time. Right, you never know when you never know how and the longer you live, the more likely in some way, shape or form, people will join it and so it's really advocating for life for people. because you might not need this today, but you could need it tomorrow. So that's, that's really important I am I think a lot of folks and especially architects don't think about that and again, I think it's also the way you're speaking to this Chris. Right, that it's inclusive design I love putting inclusive instead of universal. Understanding the seven principles of universal design, but perhaps coming up with a term like inclusive that are non-disabled counterparts to better relate to.


Chris Downey: yeah, and that's so, it's hard to argue with that it's right universal is somewhat abstract it's not quite as sort of immediately human. As the term of inclusive. So, there's a lot of power in that different language, but you know there's are some things like the principles are universal design. I really value those because as a code as a way of thinking it's not a code it's not codified but it's asking questions and posing some things that you really have as architects and designers you can't just look at the reference and comply with it, you got to think through it it's asking you to think. You know how you know is this is this providing equity and use it as if providing you know perceptible information yeah is that enabling the size and space for you to, and there's so many different ways of looking at it when I first did as someone who has recently blind. I was like I’m not seeing a whole lot in here specifically about the blind, but the more and more I dove into it more and more, I was like this is this is really remarkable there's a lot of depth here and one example is like a tolerance for error.


Nadine Vogel: Yes, yes.


Chris Downey: And that's it from the side of that experience I good experience, I had a somewhat painful experience I had once was when finding it's easy to find the first step to you know for a stair going down my cane finds it no problem, then I want to find the handrail so I went to the right side to find the handrail and boom there's the wall and I run yeah but my knuckles up against the wall and it felt like a cheese grater. It was like sharp all these sharp points on it and I had to drag up that to find where the handrail was it's like okay well without sight you can't be visually precise level of precision that sight affords yeah that's the privilege of sight, if you don't have that if you can't be that precise you might have you know imperfect vision or my some of my friends refer to as imperfect blindness low vision conditions and your site is deceptive or your you don't have as much control of your extremities if you reach out for something you need to allow for that imprecision you can't just assume everybody's going to hit that hand rail and avoid the horrific surface you just put behind it.


Nadine Vogel: Absolutely and understanding to, that there are individuals whose disability is temporary. Whether it's sight or someone you know, is it a cast for six months, I mean, whatever it may be.


Chris Downey: Yeah, or just somebody coming carrying boxes or groceries home and all sudden your arms are all full and you can’t grab the doorknob if you have a lever the handle perfect. That lever handle is there because of Ada REG requirements, but, and you can have no disability whatsoever, except for that moment that you're carrying those groceries and then and then last year and astronaut, you can float it in the antigravity space you kind of need some flexibility.


Nadine Vogel: Absolutely, and you know you know it comes down to barrier of thought, if I believe that people with disabilities don't need certain things, or that this is not important to people with disabilities and I act on it and I’m an architect or designer well then, there you go that right.


Chris Downey: Yeah, or the thing that oh they're not gonna be here.




Chris Downey: Whenever I hear that whenever I have a friend john me oh, you know this doesn't sound like a good hike for you like yeah turning on okay, the debate is over, I’m going.


Nadine Vogel: that's right that just makes you mad.


Chris Downey: Trying to decide for me that it's not safe it's not right and they're not allowing me to come to that conclusion I’m going.


NORMA STANLEY: Absolutely, like to say I don't like, for my daughter to miss out on anything and she does not talk or walk. But you know I want her to be a part of everything that she can be a pride of so I totally get just talking about don't assume anything about what a family member, individual, can do.


Chris Downey: I create a space expanding what you think about what people can do.


Nadine Vogel: Well, and Chris, I think you're a perfect example of that beyond being an architect, is it true you're a competitive rower on a crew team.


Chris Downey: Yes.


Nadine Vogel: Let's talk about that one.


Chris Downey: Yeah, it was. Something I never did sighted. And, about a year into having lost my sight had a friend who lives in downtown Oakland new Jack London Square, and he called me up and he said hey there I just found out they're starting a new a new men's crew team down here in the estuary. I talked to the coach he's up for-giving it a try with you, you want to do it, and I was like sure I don't know why not I’d actually had a friend who is blind, who was competing crew before she lost her side and then she picked it up again and so she had encouraged me to give it a try and when she realized I was 6’5, 6’4. And, and I was an avid cyclist she was like oh, you need to try rolling so anyway, I had that kernel that little thing thought in the back of my mind and it's as I got into it it's you know it's the perfect sport if you're blind and, in fact, a lot of teams it's a common practice for them to do drills with their eyes closed when they're all in the boat together. A big part of it is to is to listen to all your pay attention to all your senses, you need to hear the motion in the boat, you need to hear the blades catching the water. You need to hear the movement up and down as they slide on the seats; you need to feel things in the boat, you need to feel the set so that you know it's not tipping to one side or the other right in there it's an incredible multisensory sport, you have, there are times when the wheels come off and you got mayhem in the boat yeah, sight can kind of help out. But I can figure it out and, and the better you get the less likely you get mayhem in the boat. And it really, it's a remarkable thing I get in about I put my hand on the boat I go with it walk into the water get in and at the boat I’m just another guy just another button to see and it's all about whether I’m contributing whether I’m matching up and you know we've got some advantages in the blind experience you really get to really focus in on proprioception your awareness your body in space muscle memory. All these other experiences sound rhythm movement and there's so much to work with, and it is fabulous being out on the water, where you can just reach out, and you know just a couple inches away yeah there's water.


NORMA STANLEY: That’s awesome.


Nadine Vogel: Well, I think, if anyone illustrates what this podcast is about right Norma, that disabled lives matter, it is you. I mean architect you sing in your choir you're a cyclist you're on the road you're on the crew team. I’m not sure if there's anything you don't or can't do. But I know that our listeners are going to be so much better off for hearing this podcast and Chris you know from a business standpoint, if we have people listening to this that you know run museums run offices, want to learn more about how to work with you how best can we reach you.


Chris Downey: They can reach me through my website: www.arch4blind.com so it's architecture for the blind.


Nadine Vogel: Well, Chris Thank you once again, Norma this has been another great episode.


NORMA STANLEY: It sure has, thank you Chris.


Chris Downey: Well, thank you Norma, thank you Nadine.


Nadine Vogel: Absolutely for our listeners we look forward to speaking with you again on next week's episode of disabled lives matter. More than a podcast it's a movement, and we want you to join us, see you soon.


NORMA STANLEY: Have a blessed one.


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



May 13, 2021

Disabled Lives Matter

Season 1, Episode 11

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Joe Travolta

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

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

Nadine Vogel: Well, hello everybody I am Nadine Vogel your co-host of this podcast disabled lives matters, and as I’ve said many times over, this is not just a podcast this is a movement and helping me in this movement is my co-host, Norma. Norma say hey to everybody.


Norma Stanley: Hi everyone, welcome to disabled lives matter.


Nadine Vogel: Yeah well, you are going to find our listeners that disabled lives really do matter when you hear from our guest today. Joe Travolta, Joe you know you you've been a teacher and you know, in many ways, I think you still are a teacher, but what I’d love to do is have us start with just some background, you know talk to us about how you came to be what you do today, which is with inclusion films and partnership with options for all and futures explored and working with kids with disabilities and adults with disabilities, but I think it all goes back sometimes to how we start so Joe take it away.


Joe T: Absolutely well thanks for having me here today and yeah, I came from a town in New Jersey kind of a blue-collar town, and I promised my dad growing up that I would go to college and finish it. I didn't want to go to college, but I promised him, I would go. So, we came from a blue-collard town, we had a tire shop that I worked at and I loved working with my dad. My dad was the most inclusive, kind man that I’ve ever known. And the gift that he gave to us as kids was inclusion and diversity, everyone was welcome in our house. Everybody was the same, what all religions teach my father had naturally. And as I said, I promised I’d go to college, so I did, and I finished it and my dad was always the underdog. When I was going into teaching the field that was open was special ED and two of my good friends growing up were special needs.

So, I just kind of was a protector of them, you know I mean we teach each other, but nobody else was a lot like that. And I went into that field and I taught for a short period of time, because I was putting all my money back into the kit. As I said, I promised my father I’d go to college, I went to William Paterson, two year college then I transferred to the state college, it was Paterson State at the time, and I think it sounded too much like a prison, so they changed it to William Paterson that's my feeling and I wanted to go into teaching and special ED teaching was the hot, there were a lot of jobs in specialized teaching so that was the track that I got on and I got my degree and I taught for a short period of time. There just wasn't enough money for me to survive because the kids in the school systems need some needed some, I taught in an orphanage for children so I was literally using my paycheck to buy supplies and do things that I really loved it and I knew I would get back to it and I come from a showbiz family, but when I was teaching back then I used theatrics. My mother was a drama teacher, all my brothers and sisters were in theater I was really the last one to go into it. But I, I learned that way I had this theory about kids watching TV. If you could, if you watch they watch TV for four or five hours and back then the only have three stations back in the late 60s early 70s and my theory was if they could sit and watch TV for five hours and not get bored and know all about it, if I could make my lesson plan that interesting and teach by drama, you know, I would perform, I would perform my lessons, but it was a lot that all you know all day because I had I had like you know 15 kids on 15 different levels and I, so I started singing and I got a record deal and actually in Atlanta Georgia Norma, my  first visit was to that city, because I had a number one record at the station down there and I went down to visit, and you know it was a whole different you know coming from New Jersey to Georgia and 1978 was a was a very different just very different and I love going down there, it was right at that time that CNN one stared. So, I started after music from there I was I started acting but I always was writing and creating projects and eventually got into producing and then directing and I think it's the reason I do what I do now, I didn't want to direct. I had this project that I wanted to do and the guy that was funding it said, I would really like you to direct I said I want to direct when and what he goes no you do, because you know how to work with people. As a producer whenever there was a problem iron stuff out whatever it was. Because even the first movie I stared, I got to know the craft services, I got to know the PA’s, I wanted to know what everybody did. And what I loved about filmmaking is you have all these people working together for an outcome and it became like a family and when the production was over, everybody went on their way, but during that period of time you felt like you were part of something. So, I'll get to that a little later.


Nadine Vogel: Well, and I think that's important because you have created something, something quite big and something quite meaningful and definitely what I would consider a family like no other. So, I’m wondering if you could share a little bit about what you're doing now.


Joe T: Yeah, well eventually I knew I would get back to it and there was this group called the entertainment industry, no, the entertainment experience, and I was directing a film and the producer asked if I could put some of his kids in the film. And I said yeah sure no problem, and I said, you know this is kind of cool I’d like to do this. Not with specialize ed in mind, but with teaching kids because I loved it and I had an office to do my production company, and then we could teach kids and my daughter had a film festival at Chaminade high school out in West Coast California she asked if I would help her with her festival, and I said yeah, I said I’ll get you publicity and I’ll give you camps to give away an acting lesson and whatever. And an article was written in a newspaper called the acorn and it mentioned that I was a former special ED teacher and two parents with children with special needs autism approached me and said hey would you open your doors to special needs, because the doors are being shut. Nobody gives them an opportunity they're not included, and this was in 72 73 and I said sure, I said, you know why not, I have the teachers I love this you know we can do it. And in that same conversation, one of the mothers wanted her wanting to know first son could submit a film. I said sure if he's in high school, those are the rules. You just have to be in high school in the area, and I said what's the film about and she said it's about what it's like to be autistic from an autistic kid’s point of view that's really cool. I said well why don't you send me the film and I’ll get it in the film festival, and she said he doesn't know how to make a film he's never made a film before I go okay well that’s a problem. So, I met with him at all kids six five with big blonde curly hair and not that interested, very articulate, very high functioning. But I saw the whole demeanor changed when I said all right I really like this idea, this is what I’m going to give you a camera man, I'm going to give you an editor you have to do all the work you have to get the people that you want to interview the moms the dads the aunts the uncles. And the kids on the spectrum and you have to conduct the interviews and then I’ll mentor you. So, I you know we did that and, as we were cutting it together man, this is kind of cool. I called the Daily News out here in California and they love the story so much they did a feature about it. Then the week that we were we were doing the festival, we were expecting like 50 people. They ran another article, the day of and we had 500 people come. ABC news came down and they covered it, and that was where it really we had been doing classes for special needs, but this little documentary I got a call from Oakland University in Michigan and said hey we hear you doing camps for special needs kids, you know, would you consider you know we just got a grant. I said well how much of a grant did you get. I said ok, I'll call you back in five minutes, so I called, and I figured out how I could do it, I said why don't I come and run it. And that was the start that was like 2006 and then in 2007 I took that camp concept and created an adult program for adults with developmental disabilities and it's a filmmaking program and we've been doing that since 2007 and we have seven studios around the state of California and they go year-round, and our big push now is to employ folks that are nuero diverse.


Nadine Vogel: Absolutely, wow, that's you know I’ve kind of known the story, but hearing you tell it and just you know I’m captivated is if I knew nothing about it. It's such an amazing story and what we're gonna do now is just a quick commercial break but when we come back let's talk about that let's talk about the employment of people with disabilities and specifically those on the neuro diverse spectrum. So, everybody hang on to your hats we'll be back in just a minute with disabled lives matter and Joe Travolta.


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Nadine Vogel: Hello everyone and welcome back to the second half of this evening’s episode of disabled lives matter, I’m Nadine Vogel your co-host with Norma Stanley. And today's guest Joe Travolta. And just before we went on break Joe you were talking about how it really came to be that these camps that that you run for people with disabilities film camps and specifically on the autism spectrum have really transition to this issue of employment, and what that means, so I wonder if you could talk about that a little bit.


Joe T: Yes, well before I was directing like two movies a year and the one thing that I was noticing, I learned filmmaking from being an actor I didn't go to school  for it, I went by seeing, the lucky thing was I stared in my first movie and I had never been on a set before so I was intrigued by it and I love the camaraderie and I’d want to know what the grip did what the electrician, there were so many, usually when you think of film you think of producing, directing, acting, and writing. Those four, but there's a world of jobs in filmmaking. There's accounting, there is set building, there's makeup, there's driving, there's food there's everything that goes into everyday life goes into filmmaking, so I thought to myself, while we had a slate of films that we are going to do, I said thinking to myself wanting to be a cool thing to start a workshop. Not for people we haven't gotten a special message yet so what, how great would it be where when I do a film someone can come on from day one, when we break the script down when we budget at when we schedule it when we go for locate casting. To be able to go through it and learn the way that I learned it all the way through postproduction. And this had always been in the back of my mind. And we're funded through the regional centers in California, they pay for the folks that are in the adult program. And I was in a meeting with them, one day, and at this time we're redoing camps and acting classes, so we weren't it wasn't down that vocational route. And in a meeting with the head of the regional Center she said we're going to have a tsunami of young folks with autism, they're going to be coming into the workplace and there's nothing for them she said do you have anything. And I said well as a matter of fact I do. And I pitched them the practical film workshop, and then in 2007 we did a pilot, and you know we took like 10, 10 young people with developmental disabilities and we created the script the concept of the program is to teach them each thing, but we develop a script and then we produce the script and shoot it and edit it. And then that project becomes the lesson plan, and you just apply all the things that you've learned, that's what it is today so then once we started, I started one in Bakersfield and my partners that did the camps, they wanted to start one where they are so we went up to the east bay and then Sacramento then options for all came into the picture and we develop programs with them too and that's what we've been doing, you know pretty much the last since 2011, 2012, so it's coming on 10 years that's all the other branches started developing.


Nadine Vogel: I think what, you know, Norma this clearly illustrates that Joe you know he walks the talk however you say that. Because it's really the work show that people with disabilities do matter and they can work in all of these aspects of the entertainment industry, the film industry, that you know I think people don't think about.


Norma Stanley: Absolutely, and I think so awesome that you know you coming from a famous family just in general that you even take the time to you know, to give of yourself the way you do because I mean that was something that came naturally to you, but it was still something that's so important to the community, and I just think it's a beautiful thing. And these camps, are they just in the California area around the country because I think we share our children with that.


Joe T: Yeah, well the adult programs are in California and they're year-round. The camps there from life like 10, 11 up to 21, whatever they when they age out but we've done camps in Florida weekend camps in Arkansas, New Jersey, Pittsburgh, Chicago and then Northern California, San Diego we've done them so.

Norma Stanley: We have to get you in Atlanta.


Joe T: Well, I’m actually talking to some folks in Georgia about doing something down there so yeah. And all well, in the film industry actually there was a movie called the poison rose that my brother actually stared in but the producers of that show, we've been friends, I got them started in the business. And John came on to the scene even before we had this conversation, but we sent five of our folks to Georgia to work on that film and they were there for I think a good month. And they stayed at a house all together. Two of them, and it was really nice because my brother kind of looked out for them while they were down there. He said they were the best crew members that they had, and we actually have a nice little tribute that he did to our folks and two of them became Union eligible.


Nadine Vogel: Isn't that fabulous. So, Joe, tell us if you will a little bit about your, I think it was just released in December, Carol of the bells. Because recollection is that I think 70% of the crew on that film was made up of the students that that you trained.


Joe T: Yes, yeah, again, about talking the talk and walking the walk, I have four employees that are neuro diverse and they're my best employees to be honest. You know they show up on time they're the first ones there they leave their early and they leave late and it's a great thing to see when you train somebody and then they apply what they learn. So, I went to my partners, and I said look let's do a feature, you know you have me as a director. I'm not going to get paid as a director, so you have my services for free, we’ll each throwing some cash and let's make a film where the crew is made up of people that we train so they're always talking about outcomes and the special needs feel. What the outcome from the camp what's the outcome from this well the outcome from this is that we created something competitive of value and showed that we did this in 12 day. You know, look at what we did in 12 days and you know we used we went through screen actors guild and we got a few names in their RJ Betty from breaking bad was our main star and Donna Pascal from Saturday night fever was in it. Donna Mills and Lee Purcell and really, you know, and the great thing was going back to why I became a director is I make it feel like it's a family.  If you're a PA you are as important as my biggest star or the or the cinematographer, everybody, and when you treat everybody like that they buy in, this is their film their a part of it and they're going to work harder and you know they're going to care about it and I, you know I’m tough, a little bit tough, because my expectations are so high, but the nice thing about the production company because we do documentaries, we do commercials we do PSA is like minor league baseball it's professional they get paid but it's where you can make a mistake, or you know you get to grow, you get to cut your teeth, so when I pitched I said to production company you're getting me you're getting my pros but at the same time, those monies you're going towards employment and if there's a format pro three of them will be folks that we trade show to wait for them to. To get ready for the fields and be ready to go.


Nadine Vogel: And what's amazing is, and I think that it should illustrate how talented these individuals are if that films like how the bells I mean it's been you've received awards they've been featured film festivals. This is not you know some charity side project, and these are just ok. This is important stuff yeah.


Joe T: Yeah, and they did a, we made 25 minutes behind the scenes that cox communication played all over the country and PBS picked it up so it's you know, I want people to see what I see.


Nadine Vogel: Right absolutely. Now I know that we don't have much time left, but I did want to talk if we could just a minute about the delivering the jobs campaigns, because you produce them.


Joe T: Yes, yeah, so two years ago they were delivering jobs as a partnership between Special Olympics autism speaks and best buddies. And the entertainment foundation that's been around for years they're the ones that are like putting this whole thing together and I get a call that they're doing this PSA and the PSA was a utopian world where it's a natural thing for people with disabilities to be employed. You know whether it's in a coffee shop whether it's an art gallery or whatever and they were making this big PSA at 20th century fox big Union shoot you know, there was a you know 7500 people. So, but all most of the cast that were featured were special needs, so I got a call they asked If I have any crew members that would want to work, I said absolutely, what do you need so they go, we need someone to grab we need someone in electric we need someone in craft service and the end of the day, they had six of our folks who are hired at Union wages for this day working. To me the PSA what was happening behind the scenes, because they were hired to do skilled positions. That was the story to me, so I said who's doing your behind the scenes and they said well, no one, and I said well, why don't you hire me to the behind the scenes I’ll interview all the kids the actors and everything and you'll have this beautiful thing. Because what they do is they take that behind the scenes and that's how they get the free advertisements they got sponsors from around, so it went so well that the next year they hired us to do the PSA’s, so I directed the PSA and the behind the scenes and again 70% of the crew was made up of our students. And it's doing really, really well, which was exciting to me because we didn't have the budget that they have. But you know and again it's getting that word out and Sharm is one of the partners there a what they call that. Their HR and you know that's the big thing with HR that's where the education is. They have to learn that it can work, and you know each time you do something like that, and people see oh wow this is kind of cool and you know and I don't lose anything from hiring the people that we've trained. I don't lose any of it. And how much do you gain, you know so that's it that they're more than students their teachers. So, they teach us you know they teach us tolerance, they teach us patients they teach us understanding and we need a lot more of that with what's going on in the world.


Norma Stanley: Absolutely.


Nadine Vogel: You know, in the corporate space we refer to it as reverse mentoring. Well, I am sorry to say that we are out of time. Joe, you know I am a raving fan, we’ve had many times and I just even more after this interview. Norma.


Norma Stanley: Thank you so much, I’m so excited about meeting. You know I’m a big fan of your brothers always have been, great dancer, but yeah, thank you for being on the show today.


Joe T: I gotta tell you a story really quick. The guy is from Georgia lease containers and his son is on the spectrum and he he's going to be coming to our program and the father said, you know I got to tell you something.  My son, he's a big John Travolta fan so he's going to ask you about john right away. So, I said don't worry about it, I said that's okay, so we did a zoom and before we even started his name is john to I said john I gotta ask you a question what's your favorite John Travolta movie. So, I took that out of it and boom he right away, it goes all of them all of them that's the right answer.


Nadine Vogel: Oh, what a great way to end today's session Joe, thank you for everything that you do.


Joe T: My pleasure. Norma so nice to meet you.


Norma Stanley: Thank you so much, let me know when you come to Atlanta.


Nadine Vogel: He already told me he’ll have to tell me when he comes down to Florida. Alright, well again, thank you all of our listeners for another great episode of disabled lives matter because it’s not just a podcast it is a movement and people with disabilities do matter. Right Norma.


Norma Stanley: Absolutely. See you next time.


Joe T: All right, take care.


Nadine Vogel: Thank you. Bye-Bye.


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



May 6, 2021

Disabled Lives Matter

Season 1, Episode 10

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: John Kemp

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

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

Nadine Vogel: Well, hello everyone and welcome to tonight's episode of disabled lives matter, this is not just a podcast, this is a movement. I’m Nadine Vogel your co-host along with.


Norma Stanley: Normal Stanley.


Nadine Vogel: My amazing co-host from Atlanta, we are having so much fun doing this on a weekly basis, and we hope that all of you listeners are having as much fun and learning as much as we are actually doing this, so today's guest is the amazing the wonderful John Kemp, a very dear friend of mine, and someone that I think will illustrate so clearly why disabled lives do matter on so many aspects of life so john welcome to the podcast.


John D. Kemp: Thank you Nadine and Norma it's very nice to be with you as well.


Norma Stanley: Thanks for being here.


Nadine Vogel: So, let's start with just you know, obviously you're President and CEO of Viscardi Center but you're an attorney I mean you've done so much do you want to give us just a little bit about who you are what you do what you've done.


John D. Kemp: I’d be glad to, and I have to say that I was born with my disability, which is a distinguishing feature for the disability movement is really about 17% of people with disabilities started their lives with a disability, and so, most people with disabilities acquired their disabilities along life's path. And that does affect I think how we look at life and how much people have to go through an adjustment if they acquire a disability and it's all sometimes very new in fact disability is usually new to everybody and their family members. I think there are some tremendous parallels to other movements, especially black lives matter and, as well as some very unique pieces to it but when I was a little guy, my mother passed away of ovarian cancer, when I was 15 months old and three months after my little sister was born, so my dad had three of us kids five years old 15 months old three months old and just kind of put his smarts on and decided that he was going to make my life as fulfilling and all three of our lives as fulfilling as possible. I went to regular schools; I had my difficulties in keeping up. And my dad actually distinguished between a disability and handicap for me at that point in time, this is, many years ago. But to really say that if people don't like you for the way, you are the way you were born, then you really don't need to like them. And it was you know they either have to see you as a person eventually get through it, helped them get through it, but they have to see you as a person or if they're never going to get it so anyway grade school high school Catholic schools have a lot of newspaper bumps in the back of my head for not paying attention enough. And then onto Georgetown and then law school out in Kansas and worked as an environmental lawyer and then get into the disability rights movement really early and stayed I’ve always stayed with it, since the 70s and so it's been a great, great part of my life.


Nadine Vogel: So, thank you John, can you share with everyone on what your disabilities are.


John D. Kemp: Certainly, I was born without arms or legs off at the elbows and the knees, so I don't have elbows and I have one of two knees, and so I wear prostheses. And when people look at these, especially when I get on a plane, they say something like you know they make hands now don't you, you know. This is the, this is the power of television and communications, you know, everybody has seen the latest gizmo and gadget that's up, and so they want to tell me that, so it does start the conversation. And I know I could probably get hands, and I could get all these high-tech things and I bumped into a door jamb and it doesn't work and I’m miles away from my technologist who's going to repair it, so I kind of like my good old school stuff that works all the time and can be self-repaired it really doesn't define me.


Nadine Vogel: I get that a lot that although someone's disability maybe a big part of who they are, it never should define them that's I think that people need to really come to understand that and I’ve heard you say John, that life is a series of transitions and a little bit about when you say that because I know that when you said that you've also said it's not about the transition itself, but rather how you navigate those transitions.


John D. Kemp: Right, you know Nadine, having federal law transition planning as a requirement under the IDA for disabled students, so when they turn 14, they're required to school districts are required to offer them transition planning services. Because I as part of the Viscardi Center run a school here for medically fragile kids who have absolutely intense medical needs technology needs in the rest we start transition planning in kindergarten. So if a kindergartener says, I want to be a firefighter, we say, well, what do you think it's going to take to get be a firefighter and they look around, I think I like I don't know you know. But it we start we start them thinking about what it is going to take, and we really work early on, about making sure that they get as good an education, as they possibly can get because for a lot of people with disabilities, especially severe disabilities and education is going to be an important component of the rest of their lives, so, you know, getting as much as they can, as part of it. The transition, I just want to go back to your first moment there and say we're always transitioning we're always transitioning so you know it's funny that IDA says at 14 get a start talking about transition planning well, going I remember my first day of going to kindergarten that was a huge transition, I was crying the whole way I didn't want to go to school, I love being at home playing. What’s the school thing I have no idea what that's all about. And then, it was you know to high school and we moved from one part of the country to another, and people had to get to know me as a disabled kid in school in a Catholic school and then to college at Georgetown and you know just on and on it's always, we're always transitioning.


Nadine Vogel: Absolutely and Norma, I mean you know your daughter has significant disabilities So how are you feeling about this.


Norma Stanley: Well, I was just wondering, you know my daughter doesn't talk she was born with cerebral palsy she has um you know challenges in terms of her you know intellectual capacity, I was wondering, she was in she was in special education, she wasn't part of a typical program. How did you handle and how was there a lot of bullying back then as there seems to be today with children with disabilities, especially know the ones that are visible? Kids today, I don’t seem to think that they are very sensitive when my daughter was young, which is 30 years ago, it seemed to be so much less sensitive. What was it like for you and how did you and your father handle that.


John D. Kemp: I think you're right Norma and I’m, sad to say that you know and I’m sure you are today to observe it because we should be evolving into a much more sensitive more accepting more tolerant society and, especially, as people become who they really are and they're out and proud about who they really are and we've just seen a guy that was on one of the TV shows say that you know, he was on a dating show and he ended up admitting that he that he's gay it's like there’s nothing wrong with being gay there's nothing wrong with being different there's nothing wrong at all. But yes, I did get some bullying and it was really hurtful and I come back, and my dad would give me the kind of the pep talk and put things into perspective. But you're I do think you're right and honestly, now that you're going to think this is really weird i'm not i'm outing my own students here. But we have an Anti-bullying program at a school where there are only kids with disabilities really severe medically fragile kids attending here and they will believe each other and I look at it, I go I literally sit down with them, and I say really, you know if they're you know you of all people and me, we should understand what bullying feels like and we should never do this power play on other people. It is unfair and it's unjust, so I give them the web, for they are we have programs, but we, we have lost ground in this area and I couldn't agree more with you it's not good, and hopefully by programs like lives matter all lives matter disabled lives matter Black Lives Matter that we are trying to get back to a point where we're educating people about everybody brings value to this world.


Norma Stanley: Absolutely, one of my challenge and know how much of this is taught, is what I wonder, because it doesn't happen that you just don't pay other people of other ethnicities, they don't they're not born that way you're not enough born with it in have any everyone thought and happen, we can teach it both kinds of things that are keeping us separated from each other, is there a way to teach it do you think.


John D. Kemp: I absolutely think discrimination is taught I think power playing is taught. I think we've gone through an era, please forgive me for being a little political here we've gone through four years of a bully President, who really did not set a good example for this world and all the sudden we've got white supremacists, primarily males who think that they're better in some way and they're threatened in some way by anybody else getting a fair piece of the pie. And it's just nonsense, but we did not get good leadership, and I think it starts with leadership and, second, stating your values clearly. And being very clear about what you will tolerate what you will not tolerate and taking action on it, so we stop it, we stop it where we see it and we take appropriate corrective action you know you praise in public, and you, you talk to people privately about what it means, but it this this has to be managed and stopped and it has to be leaders that represent our value structure.


Nadine Vogel: Absolutely, because what we're seeing is you know it's permeating into the workplace. And, and you know I always say bullies grow up. They still believe it comes across a little bit different but it's still bullying and harassment and I'm not sure how to stop this other than John, you know with education and doing what you can, and I think that it at Viscardi I mean obviously you're a role model for these children. But, talk about you know your journey to this school because I think if I recall correctly, you told me that you had met Dr Viscardi at some point so can you tell us a little bit about that and the impact.


John D. Kemp: Absolutely, it is it's one of those really wonderful, you know happenings in my life, and I grew up in Bismarck North Dakota right so, we have two seasons in Bismarck it was it was winter in the fourth of July that was it alright so and I’m walking around on artificial legs on snow, like all the time. And I get picked to be the national Easter seal poster child because I went to an Easter seal camp, when I was seven and at nine they wanted me to go around the country and they saw I got picked I go to Chicago go to the bank with the keynote speaker is Dr Henry Viscardi and he's five foot seven wearing artificial legs and he gives this incredible speech about the inequality that people with disabilities face and he's taking his speech and he's ripping in shreds and he's throwing it in the air and he’s 42 years old and my dad puts his arm around me because I’m going to be presented as the next the next national poster child and he goes, you can grow up to be like him someday. And I’m nine years old, looking at this guy and fast forward to 10 and a half years ago and I’ve chosen to be the fourth CEO of the Viscardi Center. It was called abilities then, and we changed the name to honor Dr Viscardi the school is named Henry Viscardi school and you know, he was a man way ahead of his time. And a very fair and very firm guy and a very charming guy so I’m just honored to carry his legacy forward and very, very proud to have known him.


Nadine Vogel: So is that what got you to leave your law firm in DC and take this on was it just so such an amazing opportunity, what else was behind that.


John D. Kemp: Well, there's, there's a little bit more my very good friend, Paul Hern who is very active in the disability rights movement and Grad graduated from the Henry Viscardi school. Went to Hofstra which the scarf Viscardi himself had helped make accessible 40, 50 years ago. And the school was one of the three or four in the country that were really physically accessible to people with who needed physical access, So Paul and I became fast friends, when we were in our 20s and we were traveling around the country giving disability rights speeches and we'd always end up at the same place and then we'd end up in the bar having a beer together and we, and we were always having a lot of fun and we ended up in Washington DC together in 1990 and we're both running organizations and so when this eventually came open this has always been a beautiful position that a lot of people in the disability movement have known about. But it's it was Dr Viscardi than two non-disabled people and then this came calling to me and I said this this place has got to be run by a person with a disability, we have 400 employees three corporations, they have a school, we have an adolescent and adult services, we have an international oral health program, a Center for disability entrepreneurship, we're doing a lot of stuff and it's got to be led by to me it's got to be led by someone with a disability.


Nadine Vogel: Absolutely well on that note what we need to do now is just take a short commercial break, but I want people to stay in their seats don't go anywhere, because we have more to share with you from John Kemp, be back in just a minute.


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Nadine Vogel: Ladies and gentlemen, welcome back to tonight's episode of disabled lives matter. Norma I are here today with John kemp and really talking about real issues for people with disabilities and clearly to illustrate that disabled lives do matter, so Norma take it away.


Norma Stanley: I would just want to and you're just describing you know what the Viscardi Center does and all that it's doing for the disability population and the people that you serve, and I was just wondering, is it true because I’m from New York, and it seems that New York is like miles ahead of other states when it comes to providing services for people with disabilities, a separate issue the subway system seems like they have it together they kind of thought things through and providing services, but a lot of other states do not I’m in Georgia. Oh, my goodness, speak a little bit about that.


John D. Kemp: I will Norma, you know the toughness and the resilience of new Yorkers and you know it's they're never satisfied with the status quo, and I think that's a really big positive and that's what most advocates, especially with disabilities should adopt. You can't just accept where you are because we're still not equal yet and New Yorkers are not afraid to speak up, even though they may not get their way they're fighting for it and they're fighting forcefully. So, they understand politics young disabled people understand the power of politics, and I think we're seeing more young disabled people getting into politics in New York, and I think our leaders without disabilities really respect the Disability Rights vote and the movement this is starting to grow across the country and eventually I know a bunch of great leaders of disabilities in Georgia they're gonna go to leadership spots and you would be one of them. Our voices have to be heard our issues have to be heard.


Norma Stanley: Absolutely, absolutely getting louder and we do have some great leaders here in Georgia, I just happen to notice at New York my daughter was born to be added to nurture and notice it and then move back to New York, but no, I want to learn and share, we can share with the people here.


Nadine Vogel: Right, John I think you're right, I mean the issues, not only have to be heard. They have to be listened, they have to be acted upon you know people can, can’t just listen, you know hear this information, and then, when they walk away it's like they never heard it. And so the things that you're doing that the organization is doing are really illustrating this so can we just touch a little bit on this guardian project for accessible oral health. Because right, this clearly shows that disabled lives matter, but it also shows that there's something missing here that is so important that we touched on, so what you touch on that for us, please.


John D. Kemp: I sure will and I appreciate you, bringing it up and with a daughter that has cerebral palsy and may affect her ability to have to receive good quality care oral health care we've learned that it's there are so many people across the spectrum of disability that have difficulty getting access to good oral health care. Whether it's autism on the spectrum there or people with cerebral palsy just finding and getting a doctor a dentist who will see you. And it's taken a lot of litigation and maybe short of litigation, a lot of advocacy to get the American dental Association and the profession to pay attention to us as patients and way too often people with intellectual and developmental disabilities are bust into in in groups, big buses, I mean I’m literally saying buses bus to a an emergency room of a general hospital waiting in the waiting room all day, to be put under general anesthesia to have their one checkup and there dental care provided once every one and a half to two years, well they've got problems that have built up, they are sick. It affects heart lungs brain it affects your whole body, if your mouth is clean the rest of your body's going to be cleaner. So, it is just entirely irresponsible that this has gone on so long and we said we're going to fix it, and that means changing the reimbursement rates for Medicaid for adults to get services and dentist to get paid appropriately if the financial reason is, I only get one unit of reimbursement. And I might have to see this child with autism five times, and then the natural reaction is I’m going to refer this person away or I’m just going to deny. Now they're under an obligation to refer to a dentist who will see them and they can't just deny the services but it's optional for adults over 21 to get dental services on a state-by-state basis only 17 States require, have adopted a dental health care for adults with disabilities, all children up to 21 gets service dental services.


Nadine Vogel: Unbelievable, what at 21 they suddenly you fall off the cliff.


John D. Kemp: Exactly like what’s so magical about 21. Your teeth are all fine for the rest of your life, no.


Nadine Vogel: Right, I never understood it is so many things that this country says, you know what either 18 or 21 X happens and I’m thinking I don't understand who picked that number out of the air and decide, you know, for instance, you know children with disabilities, you can be on your parents healthcare till age, I think it's 26. What happens in 26 poof you know when Gretchen turned 26, she didn't suddenly become a different person and her disabilities didn't suddenly go away, I just I just don't understand.


Norma Stanley: And to tell you the truth, we have a Center here in the Atlanta area that they're overwhelmed this is a nonprofit and they'll overwhelmed to try and come to try to help people, not just in Georgia South Carolina, they can’t find consistency to take care of their children and like you say after a certain age, you know they don't they just fell off the cliff altogether so it's just really sad that you say only 17 states right now.


John D. Kemp: You know, to the to the title of your program Nadine, this is the devaluation of people with disabilities, when there are policies that are allowed to exist that make it an optional service, oral healthcare under Medicaid for adults with disabilities, that is devaluing in public policy that's just intolerable.


Norma Stanley: You know the same thing goes on for sexual health for people with disabilities, for woman particularly.


John D. Kemp: Absolutely. When these busloads of kids go into the hospital and get their general anesthesia and debt and oral health care needs, they're also dealing with the Ob gyn services for women and giving them haircuts. It's like wait a minute, this is like cattle you're treating people like objects and one. Every year and a half to two years you're going to bring them in put them completely under and then do these things that they should normally get on a regular much more regular basis and on a preventive basis as well because.


Nadine Vogel: It's beyond me that we are in 2021 and these things are still allowed to happen, I mean look how many organizations are still paying people with disabilities below minimum wage significantly below minimum wage, I mean and still getting away with it, no less. And again, I know another whole topic. But the John, another thing I wanted to ask you about is people with disabilities, not as employees of companies, and we can talk about that. But as entrepreneurs as business owners, as people that can provide for themselves and in doing so, actually provide for others, as opposed to the other way around, so can you touch on that a little bit.


John D. Kemp: Oh, I love ya. I love it I love you for phrasing it and Norma, I know this sparked your interest as well. You know this was the gap that some organizations and schools sporadically would address very on a on a very good and basis that was entrepreneurship. by people with disabilities to be a person with a disability, an entrepreneur that was always a consequence of discrimination in the marketplace and the world in the workplace couldn't get a job. I get too much pride I’m going to go back home I’m going to open up my garage or my fourth bedroom or third bedroom and I’m going to fix hearing aids or wheelchairs or I’m going to do something to sell on eBay I don't know what I’m going to do, but I’ve got too much pride and I need to I want to make some money. Well, we've sort of tried to lift that whole area up and create a very dynamic robust curriculum. That is an eight-month long program that's sitting on top of a fully accessible platform, so that, as we deliver this through social through social media through technology to people across the country, and we have said, 12 to 15 people in each year's cohort we're in our second year now. And so, anybody with any kind of disability can participate in this program and we will adapt the Program as much as possible to make sure that it fits their needs, but the idea is believing in yourself believe in your idea. Give them tactics and access to funding or capital and credit and take away some of those barriers and start removing some of those barriers that allows them to flourish, you know, we did a shark tank kind of a thing called a pitch fest at the very end in October August November of last year of 2020 and we had contributions so that every person got something but somebody got $25,000 winner with their idea cooked out another was this and they range from the ideation stage to a business that's maybe making half a million dollars to a million dollars, but they want to replicate it in another part or franchise it and they didn't know how to do that part of it so it's from startup to wherever you are in your journey as a as an entrepreneur it's great I love I love it all.


Nadine Vogel: We need to get you know somehow; we need to get this program to be featured on shark tank how cool would that be.


John D. Kemp: Wouldn’t that be great.


Nadine Vogel: That's my new my new idea, I have a couple people I’m going to call, we need to talk about it.


John D. Kemp: That is great I love the idea, and you know I think they that it would obviously get it to the general masses because that's what people need to realize is that an entrepreneur is an entrepreneur. But if you have a disability and you're denied access to capital and credit which, may I say, is a is a function of policy. Which devalues people with disabilities, so you have to spend down your assets to qualify for Medicaid right and social security.


Nadine Vogel: Yep, two-thousand dollars.


John D. Kemp: So that's all you're allowed to keep so that's only that's all you so from a public policy standpoint, it is devaluing the lives of people with disabilities by making it so difficult and then you're going to start a business with $2,000.


Norma Stanley: Right, and this is another area of intentionality with black people because we don't get the same opportunities for attending and capital as typical businesses and so that's part of, and woman, in general, but again there's another intersectionality moment where it needs to be some change.


John D. Kemp: So right Norma so right, you are so right, you could change out the words and the and the impact is the same public policy is devaluing black lives and women's lives and people with disabilities lives yeah.


Norma Stanley: An entrepreneur is an entrepreneur why can't we all get along.


John D. Kemp: Rodney was right. His question was right.


Nadine Vogel: Well, and the thing is, is that if we enable like you're doing if we enable individuals with disabilities to show their ability. Right, to become successful entrepreneurs to work in not just entry level positions but management and senior level positions and companies. They then can serve as the role models for others coming up. Right, and I think that's one of the challenges that we have and one of the beauties John with you because you are that role model. You know, we need more, we need more and you're working to do that, but I think that's part of the problem is that you know, do we see ourselves. If you're someone with a disability, how do you see yourself in the future, will you look at others like you, in some way, shape or form and when that's absent you start devaluing yourself I, in my opinion.


John D. Kemp: Absolutely right, right and you know this, the Viscardi Center is run as an entrepreneurial business, we are entrepreneurial in every decision we make. Are we going to be able to pay for this, how are we going to generate revenue, how much how much loss, are we going to absorb before we can cross over to making a profit and when do you cut your losses and stop so we do run this as a as a business and entrepreneurial business but it's like a social enterprise.


Nadine Vogel: Well, I happen to know that some of our podcast listeners are in Hollywood and do have connections to shark tank so just putting it out there Shark Tank should come calling or  we need to call them The other thing I’m thinking about again, because this is so important is maybe what we do John if you're in agreement is, we have some of your entrepreneurs, some of these individuals that have become successful with their disabilities and we interview them either on this show we put them on my TV program The Nosh again to illustrate to have more of these role models out there, that people can see.


John D. Kemp: We have incredible people I’m telling you I’m blown away by just watching how they progress through the year and then that pitch fest and how well they can present in seven minutes or six minutes, they get with their slide decks and their videos in there and what they're what they're talking about it's it would be they'd be great interviews.


Nadine Vogel: I love that, because then you know I want you, this is a saying that I know that a lot of people have used over the years on, rightly so, nothing about us without us with people with disabilities, so when we talk about disabled lives matter we should be talking to people with disabilities to clearly show, and I think that we have done that on just about every show we've had since it started the podcast. Right Norma, that’s something you and I have been committed to from day one.


Norma Stanley: Absolutely. there are so many great stories out there that have not been told, and we want to help share some of those amazing stories of successful people who are overcoming challenges and making it happen, and nobody’s really talked about it, you know, in the mainstream so we want to bridge that gap.


Nadine Vogel: Because I don't want, I don't want our podcast on to come off as inspirational. I want it to come off as impactful. We want to see change as a result of what people are hearing about and listen so, so in that in that vein, and I know we are running out of time John share with us a few closing comments, you’d like to make relative to how people can impact and influence change whether it's policy it's entrepreneurship any of the things we talked about today.


John D. Kemp: first thing I would say is that people with disabilities need to love themselves and they have to respect themselves and they have to feel that they're righteously worthy of being every in every place and in every activity always and if they take on that, then they can be of service to others, and they should accept the fact that they're going to be role models and that young people especially are desperate for role models to be able to look up to and to talk to, and they need to be accessible and make themselves available to talk to talk to young people and other people, a lot of newly disabled people even seniors who are newly disabled who don't know this world and it's a transformation, it is a transition and that we should be obligated personally I am to help everybody get along. So that's where I would start and I feel like this program does that very, very well and I really appreciate being on and being able to talk to both of you about my thoughts, but to share and listen to what you're saying as well, so thank you.


Nadine Vogel: Well, thank you John. Norma, I think this has been our best interview yet.


Norma Stanley: I’m loving it it's just I mean some extra like you said that was the goal of this whole process, and you know, making that necessary change and that's what we all want to be able to do.


Nadine Vogel: So again, thank you John. Thank you, Norma, you're an amazing co-host and another episode of disabled lives matter, we look forward to talking with all of you next week, on another episode. Remember it's not just a podcast it's a movement, and we need you to all be part of it see you soon bye everybody.

Norma Stanley: Bye-bye.


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