A disability rights advocacy podcast that brings together advocates, policy makers, and people with disabilities to talk about the issues facing the disability community.
Episodes
Wednesday Oct 30, 2019
Wednesday Oct 30, 2019
Happy Halloween! What's scarier than trick or treaters being denied candy? Ableism. And probably finding Freddy Krueger in your closet but today's episode is only covering the ableism behind the Blue Pumpkin buckets movement creeping its way across social media.
Disclaimer
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access at advocacy@able-sc.org
Transcript
Boris: Happy Halloween to all you ghouls, goblins, creepies and crawlies from your friends at the Access Aisle. I’m Boris Klaric and it is my solemn duty to prepare you for the frights that await you for this year’s Halloween festivities. That’s right listeners – there is something going on in your neighborhood. And I’m not talking about that one house down the street that always gives out toothbrushes and floss – oh no no no. I’m talking about the fear that’s turning small town America’s pumpkins blue. Take it away local news clip.
Local News Clip: You may be seeing some blue pumpkins mixed in with the traditional orange this year. Blue pumpkin candy buckets are meant to raise awareness that a child or a teenager may have Autism and in some cases may be nonverbal so they may not be able to say the traditional Halloween line “Trick or treat”. A mom from Hawaii posted what she calls her Blue Bucket Message on Facebook, saying her 3 year old has Autism and is nonverbal. Last year candy givers waited for him to say “Trick or treat” in order to get a piece of candy and she had to keep stepping in to explain. This year she hopes the blue buckets will be an automatic message to people.
Boris: There’s a lot to unwrap here with a very slim chance of a nougat center but let’s start at the origin. A mom whose 3 year old had trouble saying "Trick or Treat" at the age of 2 and felt inconvenienced by how often she had to volunteer her child’s disability to strangers in order to get free candy from them. Since when are we expecting 2 year olds to be able to trick or treat on their own or understand the economics of how costume investment impacts chocolate returns? Is this town in Hawaii so engulfed in the traditions of Halloween that they’re throwing lit jack o lanterns at kids that don’t utter the sacred three word phrase in order to get their pharmacy brand candy? If it’s neither of these things than it’s probably just another media-fueled opportunity for people without disabilities to take insignificant action on behalf of people with disabilities with no actual thought for what those people want. While this isn’t really an example of inspiration porn – it follows the same ableist recipe of focusing on the deficits of the disability and completely excluding the disability community’s input. It’s an opportunity for people without disabilities to do something they can congratulate themselves for but doesn’t actually do anything good for the disability community. Much in the same way that hating candy corn is not a personality – picking up any old cause that comes across your timeline does not make you an effective advocate. Lets keep it real: children with Autism do face unique challenges. Studies have shown that kids with Autism are significantly more likely to experience bullying than their peers. Making a vulnerable population wear something that identifies them as vulnerable has literally never been a good idea in the entirety of human history and has often times been a first step to even more problems being forced upon those populations. If you want to help a child who has trouble with verbal communication get some free candy there are other more effective means than singling them out. First, if you’re the responsible adult travelling with the kids, you could just say “Trick or Treat” for them. You could make a sign with “Trick or Treat” written on it and give it to kids who are nonverbal, shy, or just straight up don’t want to talk to strangers for the sake of a fun size Snickers. And for the candy givers – if a group of children comes to your door on the evening of October 31st, they’re not there to get your response for the census or ask about your satisfaction with your internet service provider. They want some candy. Give the kids some candy and go back to your Nightmare Before Christmas sing along DVD.
Friday Oct 04, 2019
Friday Oct 04, 2019
Happy #SCPride! To help us celebrate the 30th annual Famously Hot South Carolina Pride event, we spoke with Daniel and Ruby of globally known drag troupe, Drag Syndrome about their art, their travels, and the empowerment of drag.
Disclaimer
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access at advocacy@able-sc.org
Transcript
Boris: My name is Boris Klaric and you are parked in the Access Aisle.
Boris: Good Morning and thanks for joining us today. I’m going to be speaking to Daniel and Ruby from the world renowned Drag Syndrome. A touring group of drag kings and queens who’s stage performers are all people with Down Syndrome. Thanks for speaking with me today and for all the great work you do in helping spread the message of inclusion and pride all over the world through your art.
Daniel: Yes. That’s what we do. And what I must say from the beginning is… You know our starting point is art so this is what we're here for is to perform, is to create art. It can be dance, it can be drag, it can be ballet, it can be live art, performance. And then suddenly what happening, is stateside suddenly you become either advocate or an activist and we want to get back the conversation to the arts. To the performance, to the culture of what we do so not everything that somebody with disability does will be.. make waves and will be talked.. And then the art will disappear. The conversation has to surround the art and performance and the career that the artists have. And again this is something that when we see...when we travel the world and we see sometimes that people; instead of looking at the art first, and the craft first, there is always this label of the disabled. And its a bit boring for us because it’s not – it’s celebrated anyway. It’s unapologetic. And this conversation first about disability and then the art is a bit boring, especially for the artists that work with us, because they do what they do, they don’t really care about what people think about them, if they think that they’re special needs, disabled, or Down’s syndrome, or whatever, this is not their concern, their concern is to really, perform really well, on interesting stages and platforms. So the conversation about disability.., You know, people now see that disabled artists are interesting. There is a new wave of artists with disabilities in Europe that is doing incredible work, refreshing, interesting, insightful. That what we call mainstream audience actually really engage and love it and the disability is like another layer it's not just, it's there just like any person that have layers of their personality. It's not over dramatic, its maybe can be bonus and I think a lot of people want to divert conversation that people with disabilities are not enough to be a mainstream artist or as high quality artist as everybody else wants to be. And this conversation we were very happy that what happened in the states kind of raised awareness that people actually see the disability rather than the person and this is a bit boring way at looking at people because even if you look at disability if you look at down's syndrome, every person with Down syndrome is so different from one another. They have totally, totally different vibes. And same with other group of people, and I think dociarty have to learn that the word disability of somebody with disability doesn't mean anything about the person and it’s interesting to see all this coming and making us see that they actually have personalities and they there and they are successful as they are because they are very, very talented and very magnetic and any kind of artist you have to have these qualities to be successful artists. So you know, for us, this conversation suddenly we had to kind of get out of our artistic skills and start talking about what the art they are producing is actually affecting society and culture we didn’t want to kinda start a conversation but the conversation is by us performing and really enjoying and fulfilling our careers and suddenly you're asked to kind of justify what you do because somebody disagree with you or see disability as very limited or somebody with a disability, intellectual disability, any disability, is not a whole person, being dependent or that they are holy people, very angelic, untouchable and not real. Sot this extreme but people with disability in a place of everyone interfeing their lives without knowing them without really care its all assumptions trying to kind of some people suppress the disability community bc it's uncomfortable. So, in that case people i think missing out on great new voices with been here for long, throughout our journey we meet a lot of artists with disabilities, activists and they have minds that are so interesting the conversation we have with people we met is refreshing insightful it’s so beautiful and what we try to say is oh my god, you have to listen because it’s quite exciting, and you have to get outside of yourself and what you think about others and we living in a world where everything were everyone is criticizing everyone whether its disability, if it’s color, if it’s race if its gender and everybody thinks that they can say whatever they want about people and they can decide for them whether its good or bad or what it should be and I’m glad that a lot of people with disabilities are really stubborn people. I really like this trait for a lot of people with disabilities that suffered a lot of kind of repression and learned to be independent are super stubborn and quite loud and very clever. And i really like this voice
Boris: I would assume it contributes a lot to the art to have a strong voice like that.
Daniel: Absolutely! That’s what I’m saying. If you will see a lot of artists with disability here in Europe, their work is extraordinary. Their voice is loud and very clear. and very clever, and very refreshing and this is adding to art and culture and society and to people who like aesthetics and culture and art, This is always a conversation that needs to happen. It’s a good thing and annoying thing, and again always when you have disability you have to promote it and explain it a part of, and this society will know it really doesn’t matter. And so while working on this project , you always have to champion something, though all you want to do is just to have a party and explore, and to travel the world it’s coming with a message without us wanting this message to be what we are, They’re first of all amazing performers.
Boris: Oh yeah,. I think though with powerful art and just quality art that you guys are apart of and you guys get to not just share locally in the U.K. but to take and show the entire world a type of art like that, I mean it’s just a matter of time that I think, showing something like that to so many culture starts just a domino effect,.
Daniel: Yes, yes, What do you think Ruby, Is it nice to go to different cultures to perform in different countries and different cultures. Why it so important?
Ruby: It’s great to show the world, perform to our fans,. And everybody loves us. No haters, no protestors.
Boris: One of the things I’ve been talking about with Daniel, a little bit about how you got started, do you want to talk a little bit about what kind of brought you into the group, and why you wanted to pursue this as a career?
Ruby: Well I’ve always dressed like a boy and my sister found him online and I wanted to do drag. And I came to him and Daniel’s like “Oh my god, I’m in Drag Syndrome, How amazing is this?” With so many people and so many friends. It was great to be part of it.
Boris: Awesome. So you’ve been on the road a lot?
Ruby: Yeah.
Boris: So when you’re travelling on the road do you get the same kind of welcome at every place. Does every show have the same kind of energy?
Ruby: Sometimes. When we went to America we had a meet and greet about Drag Syndrome, But everyone was clapping and everyone was cheering. It was great. Everyone always loves us. And we deserve to be able to perform and make everyone’s lives easier. And if they hate us mate, get away from my face.
Daniel: Yeah I think she’s right. Everywhere we go we get really warm perception.
Ruby: And sometimes we have bad receptions too with certain people. Like in America for instance, there were lots of protesters and it was terrible for us.
Boris: Did you kind of expect that coming to America
Ruby: Not, no. I never thought that’d happen but when it did I was like “Oh god, are you serious?” I was shocked.
Daniel: The organization that invited us, we had great warm welcome from them. They all came to the airport to cheer them and they sent a limousine to take them to their hotel and and there was supportive press, so we did get a good welcome as well. Negative and positive
Boris: And that show sold out if I’m not mistaken
Daniel: yes, the show sold out in three hours. Then we were asked to an ankle? show that sold out as well.
Boris: Ruby, what stands out to you as the most memorable performance you’ve ever done.
Ruby: Definitely Berlin,
Boris: Oh yeah? What was special about Berlin?
Ruby; Well I met the guy of my dreams (unsure) and the crowds were wild. And they loved us so much.
Daniel: What else did you like about this gig?
Ruby: I just told you, Pansy?.
Daniel: What else
Ruby: The crowds, the food, everything really. But especially being with Daniel, he’s perfect.
Daniel: Yeah right.
Ruby: You are, Daniel. Some days you and me will argue, some days we’ll stop.
Daniel: What other gigs did you like?
Ruby: I liked Cardiff. (unsure) as drag queen. He was brilliant,
Daniel: What’d you like about your performances?
Ruby: My performances are amazing. They are mindblowing because I’m always bendy. They’re crazy with a wow factor.
Daniel. What else, what other gigs In al the gigs what did you enjoy best
Ruby: Well you know, the audience, the drinking, the hanging out with (unsure).
Daniel: Which gig do you remember a favorite place which you loved, loved, loved
Ruby: Berlin!
Laughter
Daniel: Berlin tour is the last tour.
Ruby: I loved it!
Boris: Well, that just sounds like a true artist in that your last one is always you best one.
Ruby: yeah
Daniel; That’s correct.
Boris: Ruby do you feel like drag empowers you?
Ruby: Oh yeah, definitely.
Boris: How did you first get into drag?
Ruby: Well you know, I was watching RuPaul's Drag Race on Netflix and I was so into it and so my sister found Daniel online to get me into Drag and I loved it so much. Oh god I’m such a king and I loved it.
Boris: I know you said before that your skills are unmatched. That your the best at what you do. How did you hone those skills over time?
Ruby: Well you know, I did it for a long time. Since I was a kid, since I was in (unsure) schools (unsure). Everything like that. Yeah everyone goes, “Oh my god, you're so good. Can I dance with you ``''No you can't because your too drunk.”
Boris: Do you feel like there were any obstacles or anything that made it hard for you to get to where you’re at?
Ruby: No, no, I love it.
Boris: So you found what you loved and you’ve been doing it ever since, pretty much.
Ruby: Yeah, I just love being a performer and being in drag. And my process when I dance, I do pole dancing and all that stuff. That’s how I get my dance moves to make me more flexible as always.
Boris: Did you go to like a dance school?
Ruby: No not really, but I did do ballet at the royal opera house in London. And I was really good because Daniel’s like “Oh my good, Ruby, you’re so good.” So I once did ballet and it was so awesome. I had a private ballet class in my house (unsure) I became the best person that you’ve ever seen.
Daniel: yeah, work it. Why not?
Boris: Absolutely, Absolutely. So Ruby what if I'm just coming to a show for the first time, I don’t know anything about it. I’m just coming for the first time, all my friends say it’s great. I want to come. What is something you want me to get from you performance?
Ruby: Inspiration. Because when you look at the performers and drag, and you might think, “ Why they're doing drag ” Why are they people...well not people, to me people are drag. If you love drag come to our show, love us, be our biggest fan, come in contact. But if you hate drag, hey, get lost.
Laugher
Boris: I would love to see you guys come back to the US. I’d suspect that you guys would sell out again, very, very quickly.
Ruby: oh yeah.
Daniel: Oh for sure. Yes there is a lot of interest, and mainly, a few people with Down syndrome contacted us saying they would love to meet us and love to collaborate with us. In the first show, in Grand Rapids a member contacted us before and say that he really wanted to join us so we met at the half time and he went on stage and performed as one of us.
Ruby: yeah
Daniel: He was absolutely great…
Ruby: He was a Brilliant Dancer
Daniel: Brilliant dancer, yes. Another guest artist joined up on stage and then we got a load of requests from performers in the states. So in the near future we probably will come again. We met amazing people, very interesting…
Ruby: Oh yeah, Lady Dior!
Daniel: Yeah we met great other queens and we sold out two shows with great audience, who were really interested in performance and culture so it was a very successful even. I know it’s not representing America what happened. This kind of disclination, indirect discrimination happens everywhere around the world. It’s not a national thing special to the states. But what we learned is that there are actually people judging people without actually knowing the facts and interfering with people’s life negatively when they don’t know anything about them, what they want and what they need. Also we learned that a lot of people with disabilities don’t have a loud enough voice and because of that, people are living their lives, they make their lives poorer actually. And separating and giving people with disabilities more space in society, is again, kind of trying to push away. And if you give artists a chance they develop what’s called art, and bring something new to audiences.
Boris: Ruby, do you feel like including people with disabilities is important for drag?
Ruby: Yes it is. It’s really good to encourage other people who have disabilities to come on the stage and dance with us.
Boris: Is that something that happens at a lot of your shows, that the audience performs?
Ruby: Yes, it has to be. We need to encourage other people with disabilities to be part with us and they can dance with us, like we have in America.
Boris: And so this has happened worldwide, like whenever you travel. That you’re that inclusive that anybody that wants to come and celebrate and be a part of your art gets the chance to?
Ruby: Yeah
Boris: And how does that make you feel to see people want to be a part of what it is that you’re doing?
Ruby: Well it feels really nice to meet people out and about and for the disabled, it’s important for all of us. Because if they come and face backstage to see us and what to dance with us your always welcome to.
Daniel: It’s something, again, for us a person is a person. So of course there is around a small people with visible and invisible disabilities. For us it’s the norm. This is how we roll. And we don’t apologize and talk about it too much and that surprised this is how it is and how wonderful it is and missing out. Diversity is spice of life and we have a lot of spice and thats why we're surrounded by people with different disabilities. That means we have very colorful people around us and its fun all the time . And again every disability is so unique and every person’s own disability is so unique. It’s always very exciting, you don't meet the same person again. That's why on this tour we meet hundreds and hundreds of people, very interesting people. And what personally I’ve learned, is that again, every disability is so personal that I usually ask when I meet somebody their specific disability and their specific thing and then you realize this kind of universe, this unique person with their very unique universe, and a very unique way at looking at things. And by working with this company, we meet what's called disability, and for us it’s so normal. And when we get asked too many questions about disability, its like you talk about something that you do every day. And now, suddenly you have to talk about the mundane. For you, it's the mundane, for others, it’s too intense, a big topic, something you...I guess that’s the way of the world, but I think if you hang around with us and see us performing you’ll understand that art and disability is such an amazing combination.
Boris: Yeah,I’d agree. Ruby, you got any additional thoughts on that?
Ruby: Yeah I do
Daniel: Go for it.
Boris: The stage is yours
Ruby: Thank you. I’d love to encourage other people with disabilities, mental health, or anything like that, if they want to come and see us perform, they always are welcome to. I just want to say, You guys are making our dreams come true. Making us a really good time and having a good time with us. And if you want to go out for drinks some time we can all go out for drinks as a group.
Daniel: Anything else?
Ruby: That’s it. And one thing about the haters.
Boris: Yes, please address them
Ruby: If the haters hate us, then carry on hating us. Who cares? We all performers, we’re all disabled, we all got the right to be who we are, and live our lives in drag, perform on stage and make everyone love us. And if you come to our show, the haters’ you'd see that we are not just people in drag. You’ll see that we are professional artists. That is what we are about. We’re all professional artists all working as performers, and that's what we are.
Monday Sep 02, 2019
Monday Sep 02, 2019
On this episode Boris is joined by his boss's boss and the executive director of Able South Carolina, Kimberly Tissot to discuss the challenges facing parents with disabilities and what the Persons with Disabilities Right To Parent Act did for South Carolina's families.
Disclaimer
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access at advocacy@able-sc.org
Transcript
00:00 Boris Klaric: Good morning, my name is Boris Klaric.
00:03 Kimberly Tissot: And I'm Kimberly Tissot.
00:08 BK & KT: And you're parked in The Access Aisle.
[pause]
00:12 BK: On the Access Aisle we’ve talked a lot about the rights and protections of people with disabilities under the Americans with Disabilities Act, but there are still discriminatory state laws that confuse efforts to end different treatment based on a person’s disability status. Here in South Carolina as recently as two years ago, parents with disabilities could have their children removed and parental rights terminated just because they had a disability. The good news is, in South Carolina disability rights activists stood up and worked alongside legislative partners to bring about the Persons with Disabilities Right to Parent Act and with me today is one its architects, Kimberly Tissot.
00:47 KT: Thank you. Yeah, yeah. So I think a lot of folks who have disabilities, men, women, everybody, there's always a desire to be a parent. Sometimes that course to become a parent can be difficult. It could be difficult in a variety of ways, it could be because somebody's disability is directly impacting somebody's ability to actually naturally carry a child. It's also moving forward with going to the next steps of adoption. And then also sometimes when parents with disabilities do have their children, there are difficulties with what the outside folks, the community thinks that they're capable of doing and sometimes their rights are violated.
01:37 BK: Absolutely. So what brought you into that realm of advocacy that you really wanted to help parents with disabilities?
01:45 KT: Well, I have a physical disability and I've had one since I was two. I had cancer and some of the side effects completely kind of wiped out my ability to naturally have a child. But... So I always wanted to be a mom. I knew whatever it was, I was gonna be a mom. So I... We did a number of things once I got married and we did a number of things with going to fertility clinics, tried surrogacy, got a egg donation, a number of things, and all of that failed. And when we went to go adopt, we decided to adopt from our state because we did know that there are a lot of children in our state that need forever homes.
02:32 BK: Absolutely.
02:32 KT: And we could be one of those forever homes and so we felt like we were ready to be a parent and when we went to our state's child welfare system, the first session of learning about adopting, we were told that people with physical disabilities like myself are not allowed to adopt. Of course, I always laugh and tell people, "Well, they did not know who they were messing with." You never know who's a disability rights advocate out there. And so I did a little bit of investigating within the system and learned that this was not a policy of theirs, that this was just a staff member's perception of who can and can't adopt a child from the state's child welfare system. So we did do some pushing back. Luckily, we do have federal legislation that protects the rights of people with disabilities, so we were able to pursue the adoption process. We were very lucky and we did end up with a very young baby. And he's nine years old today and is adopted. But it should have never... It should have never been a fight, especially when there's so many kids that are waiting to have families. But the perception of what I can and can't do because of my disability got in the way. And I heard stories and especially in my role as the Executive Director here, we heard that children were being removed from very great parents.
04:17 BK: And sometimes at birth.
04:18 KT: At birth because of what they, what doctors and nurses thought a person is not capable of doing. And so we just kept hearing horror stories and we did some digging into our own state law and learned that we actually had a law in South Carolina that said that people with disabilities could have their child removed and their rights can be terminated simply on the basis of who they are. So obviously that was a huge rights issue, but also violated the Rehabilitation Act of 1973, which states that any state agency, federal agencies receiving federal funds must accommodate people with disabilities and provide equal services which includes adoption and foster care. And it also violated the Americans with Disabilities Act. So we decided to move forward with writing a law that would remove any type of discrimination for the rights of parents with disabilities and prospective parents. So anybody who's wishing to become a parent, we wanted to make sure that their rights were protected.
05:33 KT: And our first bill actually died in the Senate just because of some politics. They were trying to tack on bills that did not really relate to the legislation that we wrote. But that, the first bill was very complex because it did include reproductive health. So any type of protection for individuals needing assisted reproductive treatment. So like your IVF and surrogacy and all of that. So that first bill failed and we decided to do a more simple bill that would just protect the rights of anybody who might go into the court system either through Department of Social Services or divorce situations, a family court, that would make sure that no one is losing their child because they have a disability. And it also, we wanted to make sure also that the Department of Social Services, was adequately providing services to parents with disabilities so that they can keep their child. So if there's an example that Department of Social Services was to become involved in a family's life, and the mother or father had a disability, The Department of Social Services has to show reasonable effort that they provided reasonable services with accommodations to be able to reunite that family.
07:01 BK: And that's based on this specific individual's needs and the kind of supports that they would need for their specific family and child and what they would want.
07:12 KT: Absolutely, absolutely. And it has to be individualized, which is also in the wall that it's not just a one-size-fits-all, cookie cutter approach to being able to teach parents with disabilities how to parent. And we have to remind folks, and it's really a sad situation, in what, we're in 2019 approaching 2020. We have to remind folks that people with disabilities are no different, they may just do things a little bit differently, but it does not take away their right to be a great parent, and sometimes their supports look a little bit differently but everybody, people with and without disabilities, they all parent differently.
07:54 BK: No two families look the same.
07:55 KT: Not at all, not at all. And so we do have to keep reminding folks that. So just because a mother with a physical disability, cannot physically carry a child around the grocery store does not mean that they can't wear a harness or they... A carrier, not a harness, [chuckle] or it does not mean that they cannot push their child in a stroller. And that's how I was able to carry my little one around when he was a baby, as I pushed him in a stroller using my crutches.
08:28 BK: What we've seen a lot of times when we're looking at other court cases, there is a pending court case out in Kentucky, where a child was removed at birth from a parent based on not only the presence of a developmental disability, but they factor in that parent's IQ score. How often does IQ come into play?
08:51 KT: It comes in to play all of the time. IQ scores really mean nothing. It allows you to get services, it allows you to be eligible for services, but it should never be used against you in anything that you do. And research also shows that if a parent has "a low IQ score" that the evaluation process should be different to evaluate their ability to parent. So it should be more in-home assessments. Watching the parent actually parent the young child or the teenager. And so we are seeing a lot of discrimination on the basis of somebody's intellectual disability and we've got to continue proving, you cannot just hire a psychologist to do a standard parenting evaluation because they are... A lot of times they are biased, they do think that the parents because of their IQ score, they cannot see past their ability to learn new things, to be able to parent, to nurture that child. And so we're having to do a lot of education with the way that our Department of Social Services is hiring these evaluators. Unfortunately there are only two qualified evaluators in the country and they are not in the state and so it does require a little bit of additional funding, but being able to pay an outside evaluator to come in to clearly assess a Parents' ability is priceless.
10:39 BK: It's a justified expense to help keep communities intact.
10:43 KT: Right, and it's something that the Department of Social Services should be doing because they do need to also prove that they have provided so much services to make sure that this parent is reunited with their child, and so getting an outside person to come in who is qualified is critical, but IQ scores does not tell you, does not set the tone to how you will be able to be a parent.
11:09 BK: And even looking at the diagnosis of disability itself, do you think that two people with the same type of disability are living in the same way.
11:19 KT: There is never that situation, so there's a lot of stigma out there that people with autism are all the same. No, absolutely not, people with my disability, which is I have one leg, we all do something differently. I walk on crutches, probably a lot differently than anybody else with one leg and I do not use a prosthetic. And so, everybody does something differently, so it should never be a cookie cutter approach, there should never be a folder for, oh, parents with intellectual disability, let me pull this brochure out to learn about what they can and can't do. It's very individualized.
11:53 BK: So we've talked a little bit about the things that the law does and the kind of drafts that you had to go through and changes. What are some things that the law does not help with?
12:06 KT: So at the moment, it does not help with the assisted reproductive health piece. So if a woman is needing services, reproductive health services like egg donation or surrogacy, that they have rights within those clinics. So that is one thing that we are missing and that would probably be a second piece to this legislation eventually.
12:31 BK: Okay, so if I am a parent, a current parent or prospective parent with a disability and I want to kind of explore my options, how would I get started?
12:42 KT: Yeah, absolutely, I mean contact your local Center for Independent Living, contact us. We can... We can talk through all those options and look at everything that is possible. If you have a goal to become a parent, we will help you achieve it, one way or the other, and it could be fostering to adopt, it could be looking internationally, it could be a number of things, but it could also be carrying your own child. A lot of folks with disabilities also do not know that they could have a child biologically. And so, we are here to be that support as well.
13:16 BK: And conversely, if I'm a parent of a child and I have a disability and I feel like my rights haven't been respected and I haven't received the supports that I'm entitled to, what steps would I take to make sure that those rights are respected?
13:32 KT: Absolutely, and I would tell folks to contact us, contact our organization, and we can look at seeing if their rights are being violated, seeing if services are being provided effectively. And if not, we can always file a complaint with the Department of Justice, if somebody's rights are truly being violated.
13:54 BK: Absolutely. So we see... I think, it's pretty clear all the good that can be done for communities at large with legislation like this. How common is this type of law nationwide?
14:06 KT: It is not. So we were the 13th state to get legislation that specifically protects the rights of parents with disabilities. And so, there has been more since, I think, we had three bills in the nation that passed last year, so folks are catching on really quickly. So it is a little bit of a movement right now to look at the rights of parents with disabilities.
14:32 BK: And what kind of advice would you give to parents in states that don't have this legislation?
14:38 KT: I would make sure that they make this known, make the issue known to the protection and advocacy systems, to Centers for Independent Living, and be that change agent, making sure that the state is reacting and getting legislators involved. Because I know that when we wrote the bill, a lot of legislators were appalled that South Carolina had legislation that said a child could be removed on the basis of disability. So making sure you share that story, pointing out that the law is bad and it is discriminating. And I think a lot of folks will listen to you on that. If there's never abuse or neglect, there should be no reason why the Department of Social Services is even involved. And that's still happening today though. Even though we do have legislation, we still have to keep making sure that folks are following it.
15:39 BK: Absolutely. The next step after passing legislation is always making sure that enforcement is consistent, and I'm sure anybody that's been following the ADA is well aware of that.
15:49 KT: It's a ongoing process. So I do know that our state does have a... Our state's child welfare system does have policies and procedures in place when working with parents with disabilities, but it's an ongoing training need for them as well. So making sure that we are changing perspectives within the Department of Social Services too, because a lot of folks, just like how I was discriminated within the agency, it's perception.
16:14 BK: Yeah.
16:15 KT: It's somebody's idea of what they think that you can and can't do.
16:20 BK: Okay. And what are some things that the average South Carolinian can do to help change that perception that professionals have towards people with disabilities?
16:30 KT: I mean, really educating. Just keep educating and have families. Let's show everybody that we can be parents and we can be successful parents. And I love hearing stories where daycare centers are changing their roles because they're realizing, "You know, we do have parents with disabilities. So I think we need a ramp out front of our building." And so, learning how to comply with the ADA, because they're seeing more parents with disabilities. And also, the neat thing about our legislation is that it is cross-disability. It's not just one disability. There is some legislation throughout the country that is happening where it's only protecting the rights of blind parents, and we want to make sure that it is cross-disability, because research shows that people with any type of disability can be a great parent. And we've got to make sure that we're protecting their rights.
17:27 BK: Awesome. Well, thank you so much for your time. I think this has been very enriching.
17:33 BK: Yeah, yeah. Well, thank you Boris.
17:35 BK: Not a problem. And for those of you listening at home, thank you so much. You can subscribe to our podcast. It's available on anywhere that podcasts are including, Spotify and Apple Podcasts. So go find us, subscribe and stay up to date on Advocacy for People With Disabilities and Able South Carolina.
Monday Aug 19, 2019
Monday Aug 19, 2019
On this episode we explore the untold history of the ADA with Dr. Lex Frieden, one of its architects. Curious how the space shuttle Challenger, a New York prisoners union, and Oral Roberts helped shape the ADA? Find out in this episode!
Disclaimer
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access at advocacy@able-sc.org
Transcript
00:11 Boris: Well, thank you for joining us today. With me is Dr. Lex Frieden and many people consider you to be one of the founders of the Independent Living Movement in the United States. Can you recall the moment that you heard that call to be an advocate?
00:32 Lex Frieden: Well, yeah, I think that was shortly after I broke my neck. I was in a car wreck in 1967, I was a freshman in college at Oklahoma State University, I had been there just a few weeks, and it was coming up to the Thanksgiving break. I had not been home, my home was only about two and a half hours away, but I'd not been back home since I'd been away at college and was looking forward to the break. Typically, most students would take a week off there, even though Thanksgiving fell I think on a Thursday. And on Friday, as most of us were getting ready to go home, I went to my psychology class and the instructor there said that she was gonna fail anybody who didn't show up to her class next Monday. Most people were gonna ditch whatever classes they had that week to spend the whole week away at home, but she said anybody who missed her class would fail the class. Not just lose the points for the day, but she'd fail them because she felt like she had to be there and therefore, the students had to be there and she didn't want anybody to skip on her class.
01:51 LF: So we were kind of upset about that, everybody who was in her class that afternoon were kinda upset. She did do us the favor of saying, she... Then we can come to any of our sections. If we wanted to show up at her 8 o'clock morning section, then we could go there and leave for our vacation, but that meant there were two days that we missed of the vacation and we had to stay there at school. So a few of us decided, as adult 18-year-olds might do, that we were gonna spend the weekend without going to bed and drinking our way through the various bars in the town that sold to underaged students. And we made it to about midnight on Sunday when we had a head-on collision with another car and everybody jumped out of the car, I was in the middle of the back seat and I couldn't move, I couldn't move my arms, I couldn't move my legs, I thought I had two broken legs and two broken arms. That was a bummer.
02:55 LF: I learned shortly after that, that I had a broken neck and wound up going through surgery and rehabilitation and so on. I had the good fortune to be rehabilitated at TIRR Memorial Hermann, where I now have a laboratory and where we have our independent living research utilization program and I was a patient there at TIRR for three months. And when I left I applied, not to go back to Stillwater because the campus there was totally inaccessible but there was a new college in the town, Tulsa, where I lived. And it had been built new, built from scratch by the evangelist Oral Roberts, and it was totally level entrances everywhere, wheelchair access, elevators in every building. They were even, and this was remarkable at the time, video taping all their courses. And I thought, "Well, if I have to miss class one day, that's gonna be a perfect opportunity for me to watch one of the video tapes and catch up.
04:33 LF: So I applied to go to school there and received a letter stating that I was not to be admitted and I called the dean Of Admissions who spoke to me and I said, "I think perhaps you got my... I got a letter that came off the wrong stack. I know you process these quickly. And perhaps an assistant, a secretary might have picked the wrong one up and put it in my envelope." And he said, "I'll get your file." And he said, "No, no, Mr. Frieden," he said, "You've got the right letter. You'll not be admitted to our school." And I said, "Well, if I could, did you get my grades from high school?" He said, "Yes," he said, "I saw you were a good student." I said, "Did you see I was valedictorian of my class? I had straight As." He said, "Yes, yes, yes, good student," he said. And I said, "Well, did you see my college admission scores? I was in the top 5% elimination." And he said, "Well, you're a good test-taker, too, Mr. Frieden." And I got to thinking, "What could possibly be wrong?"
05:45 LF: I said, "Did you see that I had a scholarship, the presidential scholarship that'll pay my way through college?" You don't have to be concerned about my family not being able to pay the tuition." And he said, "No, no," he said, "that's good that you have that scholarship." And I said, "Well, are you sure you gave me the right letter?" And he said, "No, no, I'm sure." I thought about it for a minute and then I thought, "Well, it may be they're trying to dissuade students from coming there, who are gonna be distractions to the other students or maybe they're dissuading students who might need help from the other students and therefore distract them from their studies. And I said to him, "You know, I have many friends who are students there on the campus, classmates and friends who would be happy to help push me from one building to the other if my motor stopped and who would be glad to help me." And he said, No, that's not the point. The point is you don't meet our qualifications for admission to the university. And I, at that point, I dropped the telephone; I was holding a phone that was connected to the wall. When I dropped the phone, it fell on the floor. I didn't speak to that person again. My mother walked by me, I was in the kitchen, she said, "You need me to pick up the phone?" And I just shook my head, I couldn't speak to her. I couldn't tell my mother, my father, my sister, I couldn't tell anybody that I had been turned down for admission to the university because I had a disability.
08:13 LF: It was embarrassing to me, at that point, it was disheartening, it was frightening, it was a pit in the stomach. And I've often said, particularly to groups, and I'm speaking of people who I presume must have experienced discrimination because of their race or other characteristics. I've often said, "I don't honestly believe people can understand or appreciate discrimination, unless they felt it in their gut." It's not something you can describe and articulate with words and that's what I felt. It just, at some point, you can say, it left an empty spot. At other points, you can say it was disheartening but you can't describe that feeling. And that was the first time in my life that I ever felt... I was told that I couldn't do something that I knew I could do on a basis of a characteristic for which I had no control. And that's probably the best definition I can give for discrimination, people are prevented from doing something that they can do simply because of a characteristic that they have about which they have no control.
09:37 LF: So I was depressed, I was... I didn't know what I was gonna do. A couple of weeks later, my father, who just mentioned this experience at his workplace, came home and he said, "We ought to go and explore the University of Tulsa," which was across town. I said, "Dad, we've been by there, that's an old school. Like Oklahoma State, they've got old buildings, they've got steps on all their buildings, they're trying to emulate an Ivy league school with all the steps in the Ivy and all of that. It's not gonna work." And he said, "Well, Tom, down at the office, graduated from there, and he knows the dean and he'll call the dean of students up there, and maybe we can just talk to him. Wouldn't that be okay?" And I said, "Okay, fine. I mean, whatever, it's not a big deal to me." And so we drove the next afternoon to the university. I got out of the van in my wheelchair and we couldn't get up the curb, couldn't get out of the parking lot. There was no way to get out of the parking lot onto the sidewalk, much less to the dean's office, which was up a floor.
10:57 LF: And the dean came out there on the parking lot, introduced himself. And he brought another dean, this was the dean of students, he brought the dean of education, Dean Fernow and Dean Harry Stephens. And the two of them said to me, "We've looked at your resume, you'd be a great student, you're the kind of student we're trying to recruit here and we'd love for you to be here." And I said, "Well, I don't really imagine myself in an environment where every place you turn, every place I'm supposed to be, there are steps." And he said, Dean Stephens said, "Well," he said, "the students here are good students. They'll be glad to carry you up the steps." And I said, "Well, I appreciate that. But to have students doing that every class I go to, all day and all week and all semester, to me, it just wouldn't feel right. I, frankly, would be afraid of my own safety after a while, and the safety of those students who were lifting me, it's a long flight of steps. And to do that over and over again, just doesn't make me feel like a good thing to do."
12:21 LF: And the other dean said, "Look across the U there. Clear on the other side, you see that construction?" And I said, "Yes," 'cause there was some building going on there. He said, "That's the first building we've built in 15 years on the campus and that building is gonna have a level entrance and it's gonna have an elevator on it. Would you consider going to school? Because we have that building? And I said, "Well, that's great. What will you teach there?" And the other dean said, "Oh, that'll be Biology." And I kinda chuckled and said, "Well, that won't be me 'cause I'm not interested in biology and I doubt that I would be a very good student." And the first dean said, "But wait, we're not married to that. Take the catalog, figure out what courses you want to take, call us and they will be in that building."
13:30 LF: And to me, that was like an awakening, that was like a miracle. They used to say the evangelist, Oral Roberts had miracles, but I never saw one at Oral Roberts. And this one across town at the University of Tulsa, they made the miracle. And that lesson has stayed with me all my life. I've used that as an example before and quite frankly, that was an example that we used in the ADA, the battle for the ADA. I used that example more than once in senators and house members office when they ask about, "What does this idea of reasonable accommodation mean?" And in the 1970s, I think about 1974 when they were working on the regulations to the Rehabilitation Act of 1973, that included Title IV and Title V. The first ADA, really. They invited me to Washington, the Labor Department had a committee that they appointed to give recommendations into the regulations. And we were sitting around the table and somebody said, "What do we call this when we're finding a substitute that's reasonable?" And I said, at the time, "Well, here's what happened to me at the University of Tulsa and I would consider that to be a reasonable accommodation".
14:57 LF: And that phrase kinda caught on obviously and was incorporated into the ADA section, if you will, of the Rehabilitation Act, the first non-discrimination of protecting people with disabilities. So the experience that I had in Tulsa, after my neck was broken, probably framed the rest of my career and that experience was enough to motivate me to study, at the time, the Architectural Barriers Act of 1968, the Rehabilitation Act of 1973, to work on the regulations, to help found the American Coalition of Citizens with Disabilities. Judy Human, whom we've interviewed, Ed Roberts, whom I've had the ever little pleasure of meeting. [15:55] ____, whose passed for many years, a woman named Diane Latin, a man who recently passed, Elmer Bartels. A group of us got together with Fred Fay in Boston, Massachusetts and agreed to form an organization called the American Coalition of Citizens with Disabilities. That was about 1974 and we kept that organization together pretty well. Frank Bowe, we hired a deaf man who had graduated from New York University as our executive director and Frank was a great leader until his unfortunate passing seven years ago. So that's a long answer to your question.
16:51 S1: This year, we're gonna be celebrating the 29th anniversary of the ADA. So I wanna talk to you a little bit about the years that led up to its passage. You were originally appointed the Executive Director on the, what we now know as the National Council on Disability, by President Reagan in the early '80s. What was your experience working inside the Reagan Administration?
17:13 LF: You have to back that up a little bit because I had been in Texas and working nationally with the ACCD. And I had met a man named Justin Dart and sort of educated him on the disability movement, the Independent Living Movement, and he became an advocacy leader, as you know. And Justin's father had been one of the primary funders of the Reagan campaign. They lived near one another in California. And Justin benefited from that relationship to his father, who by the way had disowned him some years before. But Reagan didn't know that. And so President Reagan, when he was brought a list of people to be on this presidentially appointed counsel as members, selected Justin Dart to be the vice-chair person. And the council needed to hire an executive director. They needed an executive director was included in the law. It was newly formed. Before the '83 amendments to the Rehabilitation Act, the council had been just an advisory body in the department of HEW.
18:32 LF: But as a result of a number of dynamics, the council was made an independent federal agency. And so they had the opportunity to hire fresh staff, starting with an executive director and Justin recommended me. And the other council members agreed to interview me. So I flew to Washington, did an interview. The council members who were on the committee were pleased with me. Thought it would be great to have somebody from outside the proverbial beltway to come in and lead this new council. Well, they recommended me to the president and everybody thought it was a done deal, I was gonna move to Washington, be the executive director. But a few minutes before all the papers were to be signed in The White House, the Director of Presidential Personnel got a message that Lex Frieden was not a Republican. He was a Democrat. In fact, he was a delegate to the competition, Mondale. I was working as a Mondale delegate. Had been to Democratic Conventions before that and nobody had asked me. When they interviewed me, they never asked me, "Were you a Republican or a Democrat?" It didn't make any difference. I was a leader. I was a professional. Why would that have made a difference? They didn't think so. They didn't ask me. And I didn't feel compelled to volunteer and who cared?
20:07 LF: So the presidential personnel guy gets this message and he's a little shocked and he calls the chairman of the panel, Mrs. Parrino says, "You're sending a recommendation over here to the president to work for him and the guy worked for the competition, what are you doing?" And she said, "Well, I don't know anything about that. You need to deal with him." So the guy calls me and he says, "Mr. Frieden," he said, "We're not gonna be able to carry through this appointment unless," he said, "you have somebody call who can vouch for you and they need to call right away, probably within the next 30 minutes." And I'm thinking, "I don't understand, I don't know what I'm supposed to do here. Here they've given me 30 minutes to get a recommendation and yet, they've already interviewed me and been through this vetting process."
21:10 LF: And I thought for a minute. I was sitting in my office and I thought about who I might know that could recommend me and tell the President that I was safe? And I remembered a woman who had made my bed and the beds of some of my colleagues when we lived in a kind of communal living situation a few years before, people with paraplegia, quadriplegia living together, sharing an apartment setting. And this woman had been, I remembered, the wife of the owner of one of the television stations in Houston, Channel 13, his name was Willard Walbridge. And he was kind of a famous guy, and I knew Mrs. Walbridge, and I thought about calling her. But then I thought, "Well, I don't have time to talk to her and explain it. I'll just call Mr. Walbridge. I'd never met him, never talked to him, I'm just gonna call him and tell him the deal."
22:10 LF: And so I called there and I spoke to his secretary, kind lady who said, "Well, I'm sorry Mr. Frieden, I'm sure Mr. Walbridge would like to hear your story." I told her why I was calling, and she said, "But he's busy right now. I'll get him to call you when he's finished with his meeting. It should be in the next five or 10 minutes, and I'll tell him what the call is about." And I said, "Well, do you think he... " I was just kind of curious at that point. I said to the secretory, I'd said, "Well, do you think maybe he knows the President?" And she said, "Well, judging by his mail, yes, he does." [chuckle] And I'm thinking, "Well, boy, oh boy. What... This is the best cold call a salesman ever made." [chuckle] So I never heard back from Walbridge and I didn't know what to think about that, and haven't thought about anybody else. And I remembered from Tulsa, from going to church there and being in the community, there was an oil man named Robert Parker who was very politically active. And as I recalled, he was a Republican and I had met him at the church. He was a family friend of ours.
23:26 LF: And so I called Mr. Parker and spoke to him, and Mr. Parker said, "Yes," he said, "I know the President." He said, "I'll put in a call for you." And I said, "Well, here's the number of the personnel director who called me." He said, "Okay. Well, I'll do that." So I waited a few minutes, and the 30-minute hour came across and the phone rang, and I didn't know who it was, and it was the director of Presidential Personnel. And he said, "Well," he said, "start packing." And I said, "Excuse me?" He said, "Well, I guess you're coming to Washington." And I said, "What happened?" [chuckle] And he said, "Well, a guy named Parker called me, that was fine," he said, "but your buddy Walbridge talked to the President." And I said, "Excuse me? I gave him your number." He said, "Well, he apparently didn't have time for underlings. He called the President." And I said, "Well, what did he say to the President?" He said, "It was a short conversation." He said, "He told the President there wasn't a good Republican in Texas who hadn't first been a Democrat."
[laughter]
24:44 LF: And so that's the way I got to Washington. The President was moved by Mr. Walbridge who probably made a lot of donations to his campaign as well, and I was glad to have the opportunity to work with Sandra Parrino and Justin Dart and Joe Dusenbury and the whole array of 15 members of the council. And they, from the very beginning, wanted to do something to change the lives of people with disabilities. I was apprehensive at first. Anybody in the disability community would have been... Republicans didn't have a good record on disability. Reagan had never really talked about disability himself. Nobody knew what his attitudes were, but he did appoint 15 people, and among them, people with disabilities and parents of kids with disabilities. And those parents were, they were among the best advocates I've ever met in my life. There was a deaf actress who was on the panel, and there was a woman who owned a bank in California, and she was on the panel and she had two children with disabilities, and it just went on and on. These people knew what they were talking about and they wanted to do something radical and we proposed the ADA.
26:03 LF: Now, a lot of the disability community was not in sync with us on that. They, in the first place, didn't trust the Reagan Administration. They didn't trust the Republicans, in general. They wanted to amend the Civil Rights Act of 1964. That was not our approach. We had a different approach. We wanted a free-standing bill for people with disabilities. In fact, I had done some research and discovered that on several times, several occasions in the past, amendments to the Civil Rights Bill that included people with disabilities had been made and they were fought by the civil rights community. The civil rights community didn't wanna include disability in their law. And so it was our conclusion that, fine, we'll just make the Civil Rights law protecting people with disabilities, which is what we wound up proposing. And we had a deadline to report to the President on our findings, was to be a report making recommendations for laws, and our deadline was February 1986.
27:21 LF: So throughout 1984 and 1985, we developed our report. We wrote the 13-page draft of the ADA. We put that in a report called Toward Independence. We got input from many, many groups. We had hearings all over the country. Justin Dart drove his pickup around every state at least twice, having little dinner meetings with people and consulting with them. We did a lot of things to gain input over those two years and we had the report together. That was another story, by the way. We almost didn't get the report done on time because we didn't realize that the federal printing office is the only place you can get a federal report printed. You can't take it to Kinkos. [chuckle] You have to take it to the GPO, the General Printing Office, Government Publishing Office. We took it over there a month before it was supposed to be published and they told us their schedule didn't allow for us to get it published on time. It would be six months. And we said, "Oh, that's wrong. We have to get our report done on time." They laughed and said, "No federal report is ever done on time, so don't worry about it."
28:40 LF: And I said, "You know, I'm from Texas and things get done on time when somebody asks us to do 'em and we're gonna get it done on time." They said, "There's no way you can do that, with one exception." And they told us what the exception was and that was to have a... [chuckle] The work done by a federal penitentiary. That's the only exception in the law. And as far as we knew, nobody had ever used that exception. But I went to the federal penitentiary in New York, spoke to the warden, spoke... And get this: There was a prisoners' union. So I spoke to the prisoners' union president. And at this point, in order to get it printed, they would have had to work through the holidays at the end of the year. And so the prison... [chuckle] The prisoners had to vote whether they would take this contract to print this report. The prisoners' union president read to the prisoners some of the report. And they understood what it was about, the rights of people with disabilities, and they agreed unanimously to work weekends, holidays, overnight, whatever needed to be done to get this report printed and to us in time to deliver it.
30:06 LF: So we had, at the same time... This is December. We're making an appointment with the President to meet early February 'cause we intended to have our report done and take it to the President. The law said that it will be presented to the President. We were too naïve to understand that that meant put it in the mail with the address of the President on it, and the President never sees the report, you see? It all gets read by all the staff and all that thing. We thought it meant, take it to the President. So we made an appointment and darned if we didn't get one. You see, we were ready with our press release. We even hired... We used private funds that had been donated by some of the council members to hire a PR firm to organize this big blast we were gonna have after the President endorsed the ADA. And well, we were ready to go. We were all dressed and we had our press people waiting in a hotel across town. There were to be, I think, four of us representing the council, who would take the report to the President. And we were dressed and ready to go when the spaceship's Challenger unfortunate explosion on the launch pad and the... At that point, that was just a few hours before we were to meet the President.
31:37 LF: And this whole thing was scripted, the President was gonna say how glad he was to receive this report, to endorse it in a few words and it would have been beautiful. Ronald Reagan on the steps of The White House endorsing the ADA, and it didn't happen. The President's schedule was cancelled. We couldn't get another appointment. He was gonna be in mourning, no appointments or anything for the next few days. After that, the calendar was already packed, scheduled ahead. The only thing the appointment secretary could say was, "Have you tried the Vice President?" Which didn't give us much good feeling at that point. I mean, we were saddened because we lost those astronauts and we were... I can say doubly saddened because we thought for a moment that we had lost the opportunity to start a fire that would lead to the passage of the Americans with Disabilities Act, but it didn't happen. And then we thought about meeting with the Vice President, and the Vice President was George Bush and nobody had ever heard of him. I mean, at that point in time, it was like who knows who the Vice President is today? You only hear about the President, right? Who is the Vice President anyway? Half the people can't tell you.
33:01 LF: And that's the way it was then. But what else were we gonna do? So we said, "Let's, okay, meet with the Vice President." And I think it was the following week we went to the West Wing, to the Vice President's office there. And it was almost prophetic 'cause I don't know if you know who James Brady was, but James Brady was the press secretary to the President. And early in his tenure, there was an assassination attempt on the President at the Washington Hilton. And James Brady, the press secretary, got between the shooter and the President and took a bullet. And the bullet went in his head and he had a severe head injury and had difficulty... As I recall, he couldn't speak. He was famous for giving a thumbs-up to everybody he met, had a loving family and he... The President was so fond of him and respectful that he kept an office for him in the West Wing. And so Mr. Brady would come to work there and sit during the day and greet people and so on and so forth, and it was almost prophetic. When we went in that morning to see the Vice President, James Brady gave us a wave and a thumbs-up, and I thought, "You know, that's pretty cool."
34:31 LF: So we got to the office, outside the Vice President's office, and Boyden Gray, big, tall, drink of water from North Carolina. The President's lawyer, Boyden Gray met us and gave us a little briefing and said, "The President has read your report. We gave him a copy and briefed him yesterday." And he looked at me and he said, "You're from Texas, aren't you?" And I said, "Yes, sir." And he said, "Well, be sure to tell the President, the Vice President, you're from Texas, because he likes Texans." And I thought, "Well, that's kind of cool." We were also told by an assistant there that this was just a so-called photo op, that we would have 10 minutes with the Vice President. He would take the report, the photographer would snap pictures of us handing it to him. We'd do it in a certain part of the room in front of the fireplace, and then we'd be out of there. And we thought, "Okay, well this is fine. We'll have our pictures and we'll go and do what we have to do. At least we can say we delivered the report as we were supposed to do."
35:42 LF: So we were escorted into the Vice President's office and all showed where to stand for the photos, and we did that. That was me and Justin Dart and Mr. Milbank, Jeremiah Milbank, who had been the treasurer of the Republican Party and Mrs. Parrino from New York who was the chairperson. And the four of us went in and stood by the fireplace and the Vice President came over from behind his desk and he took the report. There's some pictures of that. And we were... You know, we nodded and shook hands. I didn't even have a chance to tell him I was from Texas. And we all started to leave and he said, "Well, wait, where are you going?" And I think Justin said, "Well, we don't wanna take too much of your time. We were told this was a photo op, but thank you very much." And the Vice President said, "No, no." He said, "Come over here to the desk and sit down." And I'm like, "Did anybody tell the secretary that? 'Cause she's probably got somebody waiting to come in here." But he came, took us over and showed us where to sit next to his desk and he went around behind it, and he said, "You know, Barbara and I read this report last night."
36:58 LF: And I'm thinking, "Are you kidding me? Mrs. Bush was up reading to you at night?" And he said, "Yeah, Barbara and I read the report." And he said, "This rings home to us." He said, "This report hits us at home because we have two children, one of them with a disability who died, Robin, and we miss her terribly." And he said, "And we have a son who has a learning disability, a reading disability. And we've been concerned about their schooling, how they might do in school and we've been concerned about what barriers they might face because of their disabilities." And he said, "What you've said in this report makes a lot of sense to us, and I wanna do everything I can do to support you on this." But he said... Now, this was kind of funny. He said, "You probably saw the article in The Washington Post this morning. The title of it is, 'Where is George?'" And that article, you can go back and read it, but it makes a big deal about Reagan is the President, Bush is just kind of a hanger-on over there. He does nothing. All he does is... When the President doesn't feel like traveling to a state funeral, he'll send George. And George goes around the world to these state funerals, representing the President and the United States and that's about all he does.
38:31 LF: So Vice President Bush said, "You know, as you read, I'm just the Vice President. So I'll give the report to the President. I'll tell him that we met and that I would recommend that, and I'm sure he'll be supportive of it." But he said, "If in the future I can do anything more to help you, I'm gonna be there for you." And you know, you talk about, thinking ahead a little bit, he became the President within two years. Two years later, he was the President of the United States. And the first speech he ever gave to a joint session of Congress, what did he say? "I wanna see in my term an Americans with Disabilities Act pass that will protect people with disabilities from discrimination." Now, he did not name the ADA, but he did say, "I wanna see a law that will protect people with disabilities from discrimination." That's very... I mean, you know, you think about politicians making promises and stuff. This guy said, [chuckle] in that meeting in February of 1986, "If in the future there's anything more that I can do to help you, I will." And darn sure did, he do it. And he stayed with it until he signed it. So not many people know that whole story and many of them listening to this might have tuned out already, but it's a good story.
40:00 S1: It is. So it's been almost 30 years. It'll be 29 this week since the ADA was passed. Where do you think we are in terms of your original expectations in 1986, coming out of that meeting versus right now?
40:23 LF: Well, some of our expectations have clearly been exceeded, but we weren't clear of when. We should have been, but we weren't. We did not anticipate the World Wide Web. We didn't anticipate... We thought email would get better. [chuckle] We thought speech-to-text would get better. We even thought Text-to-Speech would get better but we never did anticipate what's happened with the explosion of electronic technology and communications. And so we didn't expect that. And then the question is would we have done anything different had we known it would happen? And that makes me think how well we did with the ADA because we tried not to make a law that really named all the ways one might discriminate or all those who might be discriminated against. That is, right there, that defines the ADA better than anything else you can do. It is a law that addresses discrimination on any basis, any basis that's tied to differences that may relate to disability in any way or that may be cast upon a person that has no control over it. So many different groups, I think, have benefited from the ADA that we didn't necessarily think of in the beginning.
42:00 LF: I will say this: We did have a lot of support from the gay and lesbian community when we passed the ADA and they were certainly aware of the implications of the ADA for people who were lesbian and gay. And I think that was important. We had the support of groups of veterans who had PTSD that hadn't really been defined as a disability at that point in time. We had the support of, at the time, finally when it passed, we had the support of the whole civil rights community. Maybe part of that was because we weren't messing with their law, but in fact, one of our recommendations in 1986 was that housing, laws that relate to housing be made to... Made clear that it should not... That it should include protection on the basis of disability. And as a result of that, the Civil Rights Act portion that deals with housing was amended in I think 1988. So the Fair Housing Act, which is a part of the Civil Rights Act, was amended and includes disability and that was a spin-off of our 1986 report. So we had an impact much greater than we thought on some areas. Among other areas, I must say I'm disappointed.
43:33 LF: The public accommodations, Title III aspects of the ADA have been fairly well-accommodated. What's frustrating to me is that people continue to build buildings without full access. They continued to violate the law when it comes to accessible parking spaces. I am frustrated by schools that don't provide adequate inclusive education in mainstream classrooms. I know that children with disabilities still are segregated. I know it's for so-called practical reasons. Some schools will defend that by saying they have specialists who are trained to treat and serve people with disabilities and therefore, they have them where they are best served. I don't think segregation is best served under any circumstances. And if I were the parent of one of those children, I would prefer that they were in a integrated classroom without a specialist if that was the option that I had. I would far prefer however, that the specialists were working in all the classrooms and I think they should be. I think all of those teachers should receive that training. So there are issues that still relate to segregation and full participation, but I'm disappointed it haven't been addressed in the area of housing.
45:01 LF: We don't... Despite the Fair Housing Amendments, there's not enough accessible housing and that many people are at nursing homes. Not because they can't take care of themselves outside the nursing home, but because they can't find a place to live where they can manage themselves. And that's ridiculous and we have to change that. That's the other thing that I think is important to say here. We are not now just 43 million people with disabilities, as we were in 1990. And now we're 53 million or 56 million or however many people there are with disabilities. Plus, 76 million baby boomers who will soon have disabilities. Plus, an array of other people who have been discriminated against on the basis of disability, even though they don't have disabilities. That being the excuse for the discrimination that occurs. So we're talking about a much larger segment of the community than we thought about when we were working on the ADA in 1989 and 1990. And I think all those people stand to benefit but they also have to be advocates.
46:16 LF: And that's the other thing I would say is that I'm disappointed that the aging community hasn't become more outspoken about the need for personal attendant services in the community, community-based services. They need to join the disability community and become more vocal about that. And if we join together, then we can affect the funding in Washington, we can affect the rules and regulations, we can be ensured that federally insured programs don't sponsor people in institutions or nursing homes. And nursing homes are institutions. So I don't care how you define it. The average length of... The average lifespan if you wind up in a nursing home is suddenly three and a half years. Okay? I mean it's a death sentence. Anyway, it's just wrong. And everyone will acknowledge, anyone that have any sense will acknowledge the community is a better option, but what are we doing to ensure that people have opportunities and accommodations in the community there? There we have gaps. And so we need to rally youth, the millennials are sympathetic but they haven't become activists yet. And we have a lot of challenges.
47:45 S1: Well, as a millennial, a lot of us are just now getting into positions in entry-level spots and in non-profits, like ABLE, where we can... We're starting to get our feet wet so we're out there, we're working, but we're... We've got, like you said, we've got a lot ahead of us and a lot to work towards and a lot working against us. But what in your opinion do you think will be the next big unifying fight that will bring people together for disability rights?
48:17 LF: Well, that's a really good question. It's hard for me say, because I'm biased a little bit by what I know. And what I know is that this aging and disability matter is a crisis of great proportions. And Bob Cosca, my friend and colleague for many, many years, Bob says, "When the old people start dying in the streets, the politicians are gonna start... Gonna come running and they're gonna wanna solve that problem." And next year is not only the 30th anniversary of the ADA, but maybe more importantly, to people with disabilities and advocates, it is a presidential election year. So I tend to focus my energy around, what are we doing to affect the election of a president who will be supportive of full participation, equal opportunity for people with disabilities, rather than celebrating 30 years of ADA? And in that regard, I do think that if the politicians figure out that if they can align all the disabled and aging people in America, they can get elected president. I'm certain of that.
49:47 LF: If you take all the old people and the kids that are trying to figure out how to care for their parents and love ones, and you take all the disabled people and the families who are concerned about them, and you work on a platform that would say, "We need community-based services that will enable people to work and be sure that their loved ones are cared for in the community and not cast away in a nursing home, that we can get help in the home, that we can get the community-based support services," that would be one platform that I guarantee you could win a presidential election. And I don't know if anybody has the wherewithal. When Bush, people don't know this... But the Bush campaign chairman was a young, he would, at that time, he would be equivalent to a millennial. He was from South Carolina, his name was Atwater, Lee Atwater, Lee Atwater. And Lee Atwater, young man, went to Bush and said, "I can get you elected President because I've done a lot of research on how the states vote, and what the issues that are gonna affect people's vote in the States are." And Atwater, according to some histories that I've read, was the first campaign manager of a presidential campaign who really used analytics to help the campaign figure out how to get the votes that were necessary to win the Electoral College. And that's where the Southern strategy began with Lee Atwater, in South Carolina and through the South-Eastern states.
51:29 LF: Atwater, at some point, figured out the disability message was a winning message. And that reinforced Bush's natural inclination to support disability. If the campaign chairman, had said, "Stay off that subject," it never would have been brought up. But Atwater said, "Anytime you get a chance to talk about disability, do it." And therefore, the night before the election, and you can go back and watch the tapes, like some of my students would do this. The night before the election, Bush paid for 30 minutes, the Campaign paid for 30 minutes on a national broadcast. And in those 30 minutes, Bush laid out what he would do if he were elected President. And he talked about this disability rights law. Atwater wrote that speech, and was responsible for that strategy. And I think if some strategists today, be that a candidate or a campaign chairman, or whomever, put together what we know now about the needs and soon to be greater needs of the community for services that we know best how to provide and what's needed, people with disabilities and disability advocates, that would be a winning strategy today.
52:56 LF: I'd love to see that happen. And if it doesn't happen, at some point, Bob Cosca's theory about people dying in the streets may be enough to rally the politicians, but that's almost too little, too late. Now I think we have the opportunity to make some significant changes in policy and direction and with leadership, we could really be a model for the rest of the world.
53:25 S1: Yeah. Well, thank you so much for your time and your insights, this has been absolutely fantastic. Is there anything you'd like to say in closing?
53:37 LF: Well, yeah. You've mentioned the millennials, I wanna give you one of the press secretary's thumbs-up, I really do, I love millennials, I love the Z generation as well. But I'm telling you that my students, most of whom are millennials, and my good friends, Maria Town just left Houston as the director of the Mayor's Office on Disability, and moved to Washington to be the Director of the American Association of People with Disabilities. Maria Town, Rebecca Cockley, you and others whom I know, you have to grab this opportunity and be leaders. And bring in with you the rest of the generation who is, I would say, probably this is the first, the millennials are the first generation that have the wherewithal, given all the technology, given all the knowledge, the good education, they've had and so on. And you have more abilities, more resources with which to change the future for Americans, people with disabilities, of mankind than anybody else has ever had. And frankly, some of you realize that, and you're not arrogant about it. Which I appreciate it.
55:08 LF: So it is a unique time in history for disability, with leaders like yourself and a unique time in mankind's history to change global warming, to change the way we accept one another as individuals and not according to some kind of tag somebody's put on them. This is the generation that can do that. So I'm... Put up a candidate for president, I'll vote for you.
55:43 S1: Well, I will get right on that.
55:45 LF: Alright. [chuckle]
55:47 S1: Once I'm 35, I will be on there.
55:49 LF: Alright, works for me.
[music]
Wednesday Jul 17, 2019
Wednesday Jul 17, 2019
In celebration of the 29th anniversary of the ADA - we've got a special interview with one of the most influential disability advocates of all time: Judy Heumann!
Disclaimer
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access at advocacy@able-sc.org
Transcript
[clip of people chanting "Sign 504" in the background]
[clip of Judy Heumann]: We want the law enforced. We want no more segregation. We will accept no more discussion of segregation. And I would appreciate it if you would stop shaking your head in agreement when I do not think you know what we are talking about.
Boris: Judy Heumann is a lifelong advocate for the rights of people with disabilities not only in America, but across the globe. She is most well known for her involvement in the 504 sit-in protests but has also served under two presidential administrations, led the World Bank's efforts to work with governments and communities on disability inclusion, and was also responsible for federal legislation for programs in special education, disability research, vocational rehabilitation and independent living. On this episode of the Access Aisle, I’m joined by Able South Carolina’s executive director, Kimberly Tissot as we learn more about advocacy from one of the most prolific advocates of all time.
Kimberly: First Judy, we really just wanna say thank you for leading the way for us. You have been the most consistent advocate throughout the years with, I think every piece of federal legislation that there is about disability rights. So from our viewpoint, thank you so much for making sure that we have basic rights as citizens.
Boris: Absolutely.
Judy Heumann: I think what's important to say is that I appreciate your comments. I think what's very important is that all of the legislation that we've been able to get passed... Now, I'm 71-and-a-half, whether it's at the federal or state level, and we have, as you will know, 50 states, it's all because of the efforts of many people. No one person does anything. And I've been really proud to be able to play a role in major legislation and bringing... I like to network.
Kimberly: Yes.
JH: For me it's like a big part of who I am, expanding this circle. And I think when looking at Centers for Independent Living as an example, you and your staff at the center, it's very exciting to see how leaders are being brought into the movement and how you're a great example. And sorry Boris, I don't know you that well. But Kimberly really over the years I think has been making a big difference in the work that's going on in South Carolina and more broadly. Congratulations on the award that you're gonna be getting from NCIL this year. And I think that illustrates the fact that no one person does anything. So I wanna thank you also.
Kimberly: Oh thanks. So you've been involved in so many pieces of legislation and you've been part of everything, I think again. And so Section 5O4, IDA, ADA, your international work even, and your business development work. And then, of course Centers for Independent Living and the disability rights movement. Tell me about the time when you first realized that you needed your voice to be heard. What was that moment like for you?
02:45 JH: I don't think there was a moment. When you're younger you don't... Regardless of disability, you're not really thinking about amplifying anything, right? You're just kinda living in your life. And I think what happened for me was something which was gradual. So in my experience in the 1940s and '50s was that we had no laws in place, and basic things like going to school... I use a motorized wheelchair, I don't walk, I had polio. At that point there were no motorized wheelchairs. I was using a manual wheelchair that my parents pushed because I wasn't strong enough to push the chair by myself. So when I was denied the right to go to school when I was five, obviously, there was nothing I was gonna be able to do, but I was learning from my family. And I think many of us can speak about the role of our parents who didn't really understand what discrimination was gonna look like.
Kimberly: Right.
JH: And even with our laws now and you were living during IDEA so it's interesting to hear at some point your story too. But for me, it was as I got older and realized that there were certain things that I needed to start doing. That I really... My parents were pushing for things that I didn't necessarily push for. One example for me really was when I was graduating from high school, and I was getting an award and I was supposed to be on the stage. And when my father went to pull me up the steps, the principal came over and said no, he didn't want me on the stage, I could sit in the front row and they would come and give me the award. And for me, that was like, "I'm leaving." But my father was, "No you're not." And he had a discussion with the principal and they let me on the stage, but I had to sit in the back of the stage.
Kimberly: Uh.
JH: So, I think that after that when I went to college, I started really to come out a little bit from my shell and I really... When working with other disabled people, maybe I'm a little feistier than some people, and I'll speak up a little bit more. I mean I was in Brooklyn and everybody was a little feisty, but... So we all played our role. But I really began to realize, I guess the big aha moment for me was when I was denied my teaching license. And I really had to... 'Cause I couldn't walk, and that was explicitly what they had written. And so really it was at that time that I had to make a decision about whether I was just going to say, "Okay I didn't get my license," which I projected that I wasn't going to get 'cause there were no other people that I knew who were teachers who were using wheelchairs, or I was gonna have to do something. And so I guess the big turning point for me was that whole process.
Kimberly: Right.
JH: So it started when I was about 20, 21. I mean, I was definitely doing advocacy work before, but I think that's when I really recognized that I had to speak for myself in conjunction with other people who had disabilities working together.
Kimberly: Absolutely. I'm glad you actually spoke about how your father had a different idea for you and you had kind of a different perception. What advice would you give youth with disabilities now when they may be at different points with their parents?
JH: So first, I think it's important to give advice to the parents and I think it's important to start working with the parents as soon as their child has been identified as having a disability, because parents, in my view, sometimes get a bad rap. I believe it's really important. Not all parents, whether you have a disabled or non-disabled child, are equally good, but I think by and large most parents try to do the right thing. And having a child with a disability, there's certainly more out there for a parent to link up to other parents as compared to when I was growing up.
JH: But I think it's our responsibility as adults with disabilities to try to work with parent-training programs and other organizations that are working with parents to really speak to them about our experiences. And obviously my bias is that we're looking for opportunities for disabled people, children and youth, both to be in inclusive settings, but it's really important that they're able to also spend time with people of different types of disabilities because for me, being able to feel pride in who you are as a disabled person and being able to learn also from adults with disabilities, being able to share those experiences is really important.
JH: And I think we really need to help parents recognize that their child has a disability and hiding it. We're not talking about it from a negative perspective, we're talking about it from a positive perspective. The kids need to be able to be themselves, to be able to dream their dreams, to be given permission to have the dreams they wish, nothing is impossible today with the way the world is changing. But the mentality, the psyche of the children themselves and their brothers and sisters and their neighbors, I think that's all really important. So, work with the family, but really start working with the kids when they're younger...
Kimberly: Yeah.
JH: Not when they're teenagers. I mean, obviously, yes, when they're teenagers, but I think working with kids when they're younger, letting them ask the questions they wanna be asking, letting them get information. I think having peers or mentors who are older than they are, who they can call on the phone, go to events with, trust, who have a little more experience in life and can kind of usher people through, I think that's really important. 'Cause it can help really usher people into a future which they may not have dreamed about for themselves, or their parents directly or indirectly may have in protecting...
Kimberly: Yeah.
JH: Your child's right, and your kid to be heard again regardless of disability. So I think it's also important for parents to really be able to look at the future. And now I'm not just talking about the future of the child, but the evolution of what's going on in our societies, in technology.
Kimberly: Oh, yeah.
JH: And making sure that their kids are being taught appropriately in schools and learning what they need, coding and all types of things that I think too frequently disabled kids are not a part of.
Kimberly: Absolutely. We were just talking about this the other day just about how some of our PE programs are still exempt and what we need to do, because that's a basic... That's a health class essentially. And that's really important. Something that... We've watched you on a number of disability rights videos and giving testimony during the 504. I resonate with that, your statements during that time, and especially when you looked at the legislator and said, "Stop shaking your head," I understand.
JH: Actually, you know, he wasn't a legislator, he was... So there were two legislators there, but he was a staff person that was sent by the Department of Education...
Kimberly: Oh, interesting.
JH: To represent the department. And in some way, as I got older, I realized this guy was a poor sucker, [chuckle] 'cause I doubt that he even supported what they were doing. But nonetheless, he was out of his league.
Kimberly: Yeah, yeah, sure. But you know, I see that a lot. I see that with different disability organizations, state agencies, they have an idea of what people with disabilities go through, they think that they know, but they really don't and sometimes, a lot of times as you know, they speak on our behalf. Tell me what you think makes people with disabilities more powerful when we advocate versus when people without disabilities advocate for us?
JH: I think it's like any minority group. It's important to have allies work with us. But if the main spokespersons on women's issues are men, there's something wrong. But having women as the spokespersons and men supporting, I think that's important. We're looking at Latinos or African-Americans or Asians or whatever the group is. In the area of disability, I think the failure to have disabled people speaking on our own behalf really also continues this belief that we're not capable of articulating for ourselves.
Kimberly: Absolutely.
JH: And I think that's true for every other group too, but because the other groups really, it's been decades now, that they are by and large speaking on their own behalf, that in so many areas, we're coming late to the game. And so it's also important that disabled people, where necessary, are given the opportunities to learn how to write a speech, how to give a speech, how to feel confident, how to answer questions, how to deal in difficult situations of all ages and to help... I think, telling personal stories is very important. At the same time, I believe that telling personal stories can be very painful.
Kimberly: Yes.
JH: And so I frequently feel that when people tell their personal stories, they're not necessarily telling the deepest personal stories, which may not always be appropriate, it depends on the situation. But I do definitely feel like whether now we're talking about a child or an adult really learning about how to think about and talk about some of the more painful situations that have occurred in your life, things that you've done that have worked and how you felt empowered even... When I was living in New York, a number of years ago, I went to a restaurant with a group of disabled friends, and it was, we went to a, I think it was a Chinese restaurant, and there were like me and three or four other people. And the owner came over and said we couldn't stay. And then I said, "Well, call the police 'cause we're not leaving." And that was really empowering for me. You know, there are these moments where, "Where did that come from?" But of course he didn't call the police.
JH: But then there was another incident later on when I was in California, where we were trying to get a particular movie theater to remove seats because when we went to the movie theater, they told us we had to get out of our wheelchairs. And of course, we weren't gonna get out of our wheelchairs. If you wanna get out of your wheelchair, that's fine, but if you don't want to or you can't, you shouldn't have to. And so we orchestrated this whole event. We brought like, there were like three or four of us in wheelchairs, and then we brought a bunch of our friends. And we went to buy our tickets and they wouldn't let us buy the tickets. And then we demanded that they sell us the tickets. And we went to the lobby, and then we were going to our seats and they told us we had to transfer and we said, "No," and we said, "Call whoever," and we went inside and they called the fire department.
Kimberly: Oh my goodness. [laughter]
JH: They did. And so one of the people came over to talk with us and our friends started going, "Sh-sh-sh." You know, "You're interrupting the movie." We gave them our card and we all worked at CIL, and we said, "Call us, we'll set up a time to talk." They removed seats.
[laughter]
Kimberly: Yes.
[laughter]
JH: So but you know it's those types of stories where we planned it in advance, I think everyone that was involved it were pretty... It wasn't our first time around the block on things like this, but it was very important. And I think these types of situations where something is happening at the moment and you feel that it's wrong, or unjust, trying to deal with it as soon as possible.
Kimberly: Yes.
JH: Getting names of people, getting phone numbers of people, asking for supervisors, doing all these things that I think are critically important because then people start taking us more seriously. And knowing what you're rights are, I think that's really important that you know what your rights are and you know what they're not so that when you're asking for something, you feel reasonably confident that what you're asking for is not only just, but it's legally required.
Boris: So I wanna take it back to the signing of the 504. What were your expectations in getting that signed and did you feel like the fight was really over, once the ink dried?
JH: Well, what our expectations were... Well, historically, what happened was the law was passed in 1973, it was the Rehabilitation Act of 1973 was amended, which dealt with the typical Department of Rehabilitation Services, but also one very important part of that law was Title V. And in Title V... So, anybody watching this who is really into... It's not only history because it still exists today. Title V is where you have Section 501, which addresses the federal government and employment and 502 and 503 and 504. And 504 said that if an entity was getting money from the federal government, it couldn't discriminate against someone who had a disability. And as some people know, the law itself was like 42 words. And so, in order for that law, 504 to become a reality, it really was important that there be regulations developed that would answer a series of questions. What do you do? Are you gonna make every building that gets money from the federal government accessible over night? Who is someone with a disability? What is an accommodation? And so you can see that the 42 words statute then became a set of regulations that were many many pages.
JH: Now, those were developed because of leadership from the Department of Justice and people like John Wodatch who now is retired but is still actively involved in legal issues around disability in the US and around the world. And there were meetings that were held, where the Department of Justice employees, actually it was Health Education and Welfare at that time, where John and his team were learning about the different kinds of discrimination as well as what kinds of remedies could be expected. And so the draft regulations were weaker than we would have wanted but they were basically a set of regulations that many people felt were reasonable for the time and if they were implemented, would make a dramatic difference. And they did not get signed by the Nixon or Ford administrations. And so when Jimmy Carter ran for president, many of us supported him, and one of the reasons for the support was he said that they would sign the regulations in the form that they had been out for comment with the comments that had come back and then that wasn't happening.
JH: And so I think we... Our expectation was that the regulations be signed as they were and that we wanted no more compromises. So we knew very clearly that getting these regulations signed was only the beginning of a game or a third of the way into the game because then we were gonna have to be dealing with educating the disability community, educating all the leadership in the organizations, hospitals, schools, anything getting money through the federal government, state government, city government, on and on. We were gonna have to make sure that they understood what they were supposed to be doing. So it was really just the beginning. And here we are in 2019, and in 2018 I was giving a presentation up at Radcliffe in Harvard and a really nice Dean got up and talked about the ADA and how their obligations began under the ADA in 1990, and I got up and I spoke and I said, "Actually, these obligations came about in 1973." Now, I think this also speaks to, and I had an interesting discussion with a young disabled woman in the last couple of days who is attending a university where there are many universities in the United States, progress that's been made, but more that needs to be done.
JH: And she was telling me that one of the board of governors at this school, it was brought to her attention that there were issues on the college campus, and she said, well basically they didn't need to do anything until a complaint was filed, and I said to this young woman, "So has anybody filed a complaint?" And she said, and I completely understand what she said, "It's difficult for students to file a complaint because they're afraid of what's gonna happen while they're at school or what could follow them." Now I think what's important is that these students not feel alone but I understand what they're saying, but complaints against the university do not have to be filed by a student. They can be filed by anybody in the community. And so I think that's something we also need to be looking at is how can, for example, the Centres for Independent Living and other organizations that are working in local communities, work with students to really help advance remedies that may or may not have to come about as the result of the complaint, but I think there's a lot more to do.
JH: But I think Boris, the long answer to your short question, here we are 1973 to 2019 and as far as 504 is concerned, still a lot more work to be done. And again, I think when you look at the LGBT movement and the women's movement and others, they're much stronger than we are and so that's really an area that we have to be really continuing to work on is really becoming a stronger movement that is more diverse and where we can bring other movements that have not focused on disability into our movement to see the term intersectionality and how bringing all of us together is important, and that cases of disabilities that we are playing a pivotal role.
Boris: And on that subject of these other movements and that intersectionality, I think we're all very familiar with the power of the sit-ins of the 504. And I know I've watched that drunk history segment several times, but what gets lost in that narrative sometimes is the role that other civil rights organizations and other groups had. Can you talk a little bit about what kind of assistance and what kind of role other movements played during those sit-ins?
JH: Yes, it's a great question. So one of the reason why the 504 demonstrations were so successful, was that at that point in time, in the disability community, we were already working with other movements. So we were working with the labor movement, we were working with the progressive religious community, Cesar Chavez and the Farm Workers, and the Black Panthers and Glide Memorial Church and which was a very progressive church in the Bay Area. People knew us. And I think what was important is people trusted us. We had really been working on developing alliances where we as the disability community would support other groups when things were happening, they would support us. And we had already started in Berkeley at the CIL in Berkeley and I think at a San Francisco CIL and others. Working with other groups around city budgeting and county government budgeting where we collaborated together. So we weren't allowing government to kind of pick us off. And so we had relationships developed there, and also we had been working with Legal Aid on issues around accessible buses and transportation and various issues. So the people from the disability community were respected as knowledgeable people who cared about diversity and, like other groups, were really advocating for change.
JH: So I think that was really very helpful. So we really didn't have pushback from people in our communities during the demonstrations, and we had people who were supporting. If you go back and look at some of the historical documents, there were city councils around the state that were passing resolutions in support of the 504 demonstrations. And the governors, out of the Governor's cabinet, Ed Roberts was the director of the Department of Rehabilitation. And so he was talking to other heads of departments and one of the departments sent mattresses down and blankets down so that people didn't have to sleep on the floor. And in the film called "The Power of 504", which is... It's 18 minutes and you can see it on YouTube, and you'll see that the mayor at that time, Mayor Moscone, was trying to get showers put in to the bathroom, so that people who were staying there could get showers. And of course he wasn't successful on that but they were trying, at many different levels. And we had food that came in because different organizations, brought in food.
JH: We had medical people there because there were a lot of people and someone could get sick or something could happen. And it was... I think what was really very important about those days was that it was cross-disability. And I think that was a unique time for deaf people and blind people and physically disabled people, and we had some parents who had disabled kids, in the building to really, what I like to discuss as breaking bread together. So it was really, I think, very, a very important time.
Kimberly: So this year... This month we're actually gonna be celebrating the 29th anniversary, we're getting up there, of the Americans with Disabilities Act. And I know that we have so, such a long road ahead of us. But what do you think is the most significant impact the ADA has made so far? And what do you think is next?
JH: I think that the ADA has had a very profound effect on certain areas. So the build environment, transportation, I think those areas we can definitely argue have been dramatically changed. In as much as between 1990 and today, all buses are accessible and if they're not, they're big time exception to the rule and complaints being brought against whatever the entity is. And I think we are seeing, going beyond accessibility, we are seeing more disabled people getting jobs. I had a very interesting conversation last night with a friend of mine who works for a bank in California, a big bank. And she has a disability herself and she was... And she's one of the vice presidents, they have lots of vice presidents, but it's still a senior position, and she's one of them. And that's really enabled her, amongst other things, to be able to be bringing other disabled people into the workforce. So she's not on interviewing committees or hiring them but she's getting people in positions to do recruitment, to recruit disabled people, and she deals... At least 50 people, since she's been there for the last couple of years, have been brought in and the numbers of people identifying as having a disability have gone up from below 1% to a little above 3%.
JH: And she was telling me about another colleague who has a disability, he works for another big bank out of New York where they're having similar success. So I think the important part of that story is when minorities, women, others come into government or business or set up their own businesses, we typically see that people bring in people from the communities that they represent and that diversity also expands. So the absence of disabled people or the absence of people who have disabilities but don't identify is an issue, the more disabled people that we can get into positions of leadership the more we can get people who have invisible disabilities to be able to speak up and to acknowledge that they have a disability, I think really a lot of what we've been discussing, relates to... We talk about 56 million people with various forms of disability. The Gay Pride Day Parade in New York had four million people. Two years ago I was the Grand Marshal at the disability pride parade in New York and there were about 2000 people.
Kimberly: Man.
JH: So I think we need to really continue the work that we're doing and allow people to feel that we should be proud of who we are and what we contribute.
Kimberly: Absolutely, absolutely.
Boris: So where do you feel like that opposition to the disability rights advocacy and all the things that we're talking about, what do you think the root cause of that opposition to that advocacy comes from?
JH: People don't necessarily wanna change, by that I mean the person or the entity that we are saying needs to change, they don't wanna change in general. In some cases, tell me what to do I'm happy to do it, in some cases, it's why and how do I do it, so I think there are a variety of reasons. But again at the end of the day it's... We need to be dividing our voices, we need to be able to really talk about the changes that have been made as well as the changes that continue to need to be made. I think when we look at issues like personal assistance services and employment and separating the two, but employment is clearly a critical issue, there are many people out there who are qualified to work and are not getting jobs for any one of a variety of reasons.
JH: There are in-roads that are being made as we've just been discussing but we need to really continue I think... We talk a lot about the numbers of people unemployed which I think is important but I actually think it's really important to talk about the people who are employed, who have different types of disabilities, who are making contributions, who can be interviewed and be the voice to say, "This is how I got my job, these are the forms of discrimination that I experienced in the beginning, this is what I was able to do," or, "I experienced no discrimination. I was just looked at for my qualification. I got the accommodations that I needed," or any one of a number of issues. But I think talking about both the problem and the solution and things that are happening and really getting people into senior positions.
Boris: Yup.
JH: And I think holding, whatever the entity is, accountable and for me that means meetings with leadership from within the organizations and from outside of the organizations. Talking about a university, universities are not just there to address the issues of people on campus, universities are there also to serve the community. So things like accessibility, admissions policies, drop-out rates and disability studies, all these things are important issues. Many universities around the country for the last number of years have working groups which are addressing issues around diversity. If you go on to many of these college campuses and ask them for their report and ask how disability was included, in some cases you will be pleasantly surprised but in many cases you will not be surprised because there's very little, if anything, there. And that's where I think students and others need the support of the community to say that you're invested in a state school, it's your tax money that's paying in part for the state school, and you wanna be able to to hold them accountable.
37:58 Boris: Absolutely.
38:00 Kimberly: And diversity is a hot topic and we talk about that a lot around here. There's a lot of diversity initiatives from other organizations and then when we ask about disability they're like, "Oh, I haven't thought about that," well, yeah, we're part of that discussion. But it's just so funny how everybody has different perceptions of what is included but it is our voice that changes that when we're there.
38:27 JH: And I think that means that we also have to have people who can get engaged. As we're getting more organizations to recognize that disability is absent from what they're doing in the area of diversity or even if it's an organization that is made up of a particular diverse population, getting those different groups to really have opportunities for discussions about, "Maybe you already are including disabled people and you don't know it." And I think I, speaking for a minute about being Jewish, because there's been a push in the Jewish community as a result of an organization called The Ruderman Foundation in Boston to really... And it didn't just come from the foundation, 'cause it's really something that a number of the synagogues around the country have been dealing with since the '80s, but I think it's been more in earnest since like 2010 as have a number of Christian organizations and I think in some of the Muslim communities also.
39:52 JH: But having discussions, which are not always easy discussions about what it feels like to be in a religious community where you are not seen as an equal. I gave a summer talk one year and said... And I gave a story about, "Okay, your daughter or son tells you they're in love and they're bringing someone home to introduce to you and they have a disability, what do you do?" And, you know, that typically wouldn't be well how do they get along and what are they looking for in work and blah, blah, blah. It's really looking at the disabled person in a negative way.
40:34 Kimberly: Right, right.
40:35 JH: Why is that there and what do we need to do to change that? So yeah, I think as we're looking at coming upon in 2020, the 30th anniversary of the ADA, I suggest things like go to your public television stations, your NPR, now, and find out what could you all be working with them on so that they can be highlighting what's going on in the communities, so they could start doing some programming now. And thinking about your local NPR, and your local PBS it might be interesting to see if you could get something focusing on what role did South Carolinians play in the passage of the ADA?
41:28 Kimberly: Yeah, that would be awesome.
JH: But you kinda need to speak... Start speaking to them, yesterday.
Kimberly: Yeah, yeah, I know... [chuckle]
JH: I think as we've been discussing, looking at the historical role that every state played in this, I think could be very important than maybe on the evening news or whatever some of the local events are and even if they show films over a month, like I hear they show films on Saturdays, they're usually national films. But I just think, yeah, there's kind of interesting possibilities of what local stations could do that really could talk about what role has the ADA played in their lives as well as what more needs to happen? I really appreciate doing this.
Kimberly: Yeah, we really appreciate having you and just a final advice that you would give to the disabled community. What advice would you give them to begin being part of the movement and making change?
JH: People need to feel welcomed. They need to feel that they're joining something which will be of benefit to them, and that they can contribute to and everyone's got a certain amount of time that they can give. And I think ultimately it's really on a one-to-one basis and a group basis, having people with different types of disabilities being involved in reaching out and really talking about issues that make a difference for people. And I think of people with psychosocial disabilities, and learning disabilities, and epilepsy and diabetes, really allowing people to understand the breadth. And it's a lot of work but you may wanna look at having some kind of a parade next year which would bring not just disabled people together, but bring this coalition of groups together to celebrate the 30th anniversary of the ADA and it could be an opportunity to get these other organizations involved in committing to helping put it together to bring people to the parade, and including people or speakers to really embellish not only the good work that's been done, but what more needs to happen.
Kimberly: Absolutely, we do something similar with over 30 different organizations, we host our advocacy day at the state house and it's a beautiful demonstration because that does show how we are stronger together with a cross disability representation as well, that we can make change that way. And so when we come together, it's really magical 'cause there's also disability hierarchy within our own community that we've got to... We've got to change. Our barriers are no different from individuals with intellectual disabilities. We still face employment and transportation. I think that's been the same barriers for years and years and years, so but that's a great idea, we can easily create something off of that event as well during that time.
JH: And I think being involved in... Well, ensuring that the community is represented by the diversity.
Kimberly: Yeah.
JH: Racially, linguistically, dealing with issues around migrants because South Carolina definitely has immig... Well, we're all immigrants.
Kimberly: Right.
JH: I love asking people, "Where is your family from?" And they'll say, "Michigan." Like, "No. Where is your family from?" And people frequently do not know where their family is from. I'm first generation, so I know that 100% of my family is from Germany and why we left because my parents left because of the Holocaust. And people need to know their origins, they need to, in my view, really dig into why did your parents come here, or your grandparents, or your great-grandparents, what were they leaving? What were their experiences? And to be more respectful of people who are coming from other countries who in many cases they're fleeing persecution and remembering that everyone's story may be different, but this country, it was natives that lived here and we came and did all kinds of things in taking over the land. But I think our history, disability history, and all histories are really important for people to understand.
Boris: Yeah.
Kimberly: Mm-hmm.
JH: Yeah.
Kimberly: Yeah, yeah.
JH: Well, it's very nice to see you Boris and very nice to speak with you again Kimberly.
Kimberly: Yeah, and thank you so much.
JH: Thank you for your audience, it's been great.
Boris: Thank you.
Kimberly: Thank you. Thank you.