Intergenerational Disability Advocacy with Judy Heumann

Episode 47 March 07, 2021 00:51:46
Intergenerational Disability Advocacy with Judy Heumann
Freewheelin with Carden
Intergenerational Disability Advocacy with Judy Heumann

Show Notes

Intergenerational Disability Advocacy with Judy Heumann hosted by Carden Wyckoff


Who is Judy Heumann?

Judith (Judy) Heumann contracted polio in 1949 in Brooklyn, NY and began to experience discrimination at five years old when she was denied the right to attend school because she was a "fire hazard." Her parents played a strong role in fighting for her rights as a child. Heumann determined that she, working in collaboration with other disabled people, had to play an increasing advocacy role as she and others experienced continuous discrimination because of their disabilities. She is now an internationally recognized leader in the disability rights community and a lifelong civil rights advocate. As a Senior Fellow at the Ford Foundation, she is currently working to help advance the inclusion of disability in the Foundation’s work and is leading a project to advance the inclusion of disabled people in the media.  

President Obama appointed Heumann as the first Special Advisor for International Disability Rights at the US Department of State, where she served from 2010-2017. Prior to this position, she served as the Director for the Department on Disability Services for the District of Columbia, where she was responsible for the Developmental Disability Administration and the Rehabilitation Services Administration.

From June 2002- 2006, Heumann served as the World Bank's first Adviser on Disability and Development. In this position, she led the World Bank's disability work to expand the Bank’s knowledge and capability to work with governments and civil society on including disability in the global conversation. From 1993 to 2001, Heumann served in the Clinton Administration as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education. She was also responsible for the implementation of legislation at the national level for programs in special education, disability research, vocational rehabilitation and independent living, serving more than 8 million youth and adults with disabilities.

Heumann graduated from Long Island University in Brooklyn, NY in 1969 and received her Master’s in Public Health from the University of California at Berkeley in 1975. Her goal in life is to continue to advance the rights and empowerment of ALL disabled people around the world. She is also currently building an online presence through The Heumann Perspective which can found on FacebookYouTube and Twitter.



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Episode Transcript

Speaker 1 00:00:04 Hey, and welcome to freewill. And with carton podcast, I'm your host carton, white cloth wheelchair warrior and disability advocate based in Atlanta, Georgia. On this podcast, we believe in creating an accessible world, strengthened by supportive allies to build inclusion and belonging. We share stories from people with various disabilities and I'll break down barriers for the disability community. If you like what you hear in this episode, Jake, please rate, review and follow this podcast and share it with a friend. You can DM me on Instagram at freewill and with carton. If you want to come on the show or give feedback, please download the app. I access life. It is a mobile app that rates interview places on the built environment to break down barriers and transparency on the bathroom, interior, harking. And anytime you go into a new place, you can find the mobile app I access live on Google play and the Apple app store use the referral code card in my name when signing up C a R D E N I access today's guest is Judy human, who has a lifelong advocate for the rights of disabled people. Speaker 1 00:01:16 She contracted polio in 1949 in Brooklyn, New York, and was denied the right to attend school because she was a fire hazard at the age of five. She now is an internationally recognized leader in the disability rights community. You can read her book being humid and see her as the lead role in the Netflix documentary Crip camp, which shares the stories of disabled teens out of camp in the 1970s and how they help spark the disability civil rights movement. Judy was a founding member of the Berkeley center for independent living and then served on its board of directors from 1973 to 1993. The center for independent living was the first of its kind in United States and helped to launch the independent living movement nationally and globally in 1982, Judy cofounded the world Institute on disability with ed Roberts and Joan Leon, a nonprofit that works to fully integrate people with disabilities, into communities around them, be a research policy and consulting efforts from 1993 to 2001, Judy served on the Clinton administration as the assistant secretary for the office of special education and rehabilitative services in the department of education, she has played an impactful role in the development and implementation of major legislation, including the Ida section five Oh four, the Americans with disabilities act and the convention on the rights of persons with disabilities. Speaker 1 00:02:47 She's also responsible for the implementation of legislation at the national level for programs and special education, disability research, vocational rehab, and independent living serving than 8 million youth and adults with disabilities. She's a world traveler, influencer game-changer and activist, and one of my sheroes. And I'm so looking forward to interview her on this episode today, enjoy, Hey Judy, thanks so much for joining the podcast freewheeling with Cardin. I'm really excited that you're here today. How are you Dan? Speaker 2 00:03:25 I'm doing good. Thanks so much for inviting me. Yeah. Speaker 1 00:03:28 Wonderful. And I know you are a powerhouse of a disability advocate. A lot of people know you from Crip camp, but also helping to pass the ADA and the rehab rehabilitation acts that passed throughout the years and kind of wanted to start back from the beginning of where that initial support came from. And I know family was really important to you and we both have really incredible moms that don't take no for an answer. So talk a little bit about that. Speaker 2 00:04:01 So I'm 73 years old and unfortunately my parents have a blessed memory passed away in the nineties, but they were like your parents and like so many other younger disabled people who were fortunate to have parents who learned how to become advocates because my parents certainly were not like born advocates were Jewish. My parents grew up in Germany, they lost their parents in the Holocaust. And my mom was sent out of Germany when she was 12 to live with family that she didn't know in Chicago. And my father was sent to Brooklyn, what he did now, some of the people there, but nonetheless, they were kind of making their way in the world. And they met in 1945, got married in 1946. And I was born in 1947 and they didn't really know any other families who had disabled kids. They certainly didn't know anything about right. Speaker 2 00:05:05 Cause really at bedtime, the issue of rights for disabled children and adults were beginning to be discussed more, but certainly not in a way that the average family was learning. And so I had polio in 49. My brother was born a month after I had polio. And when I was five, my mom took me to school and uh, pushed my wheelchair to the neighborhood school. And I was denied admission to the school because the principal said I was a fire hazard. So I didn't really know what that meant. And I think in a very real way, my parents didn't really know what that meant, except that I wasn't going to be going to school. And the first, second, third half of the fourth grade, the board of education in New York city provided a teacher coming to my house for one day, for an hour at another day for an hour and a half. Speaker 2 00:06:10 And I think today that's something that people don't relate to because some of the big issues we're looking at our kids being in school, being an inclusive settings, but knapsack that, like I said, time, there were at least a million disabled children that the government acknowledged were not in school at all. And they didn't have any data on the number of kids who are not getting appropriate educations. And that data didn't come about until the seventies. So this was in the sixties. And then finally I did get to go to school in the middle of the fourth grade, but again, it wasn't in my neighborhood school and it was classes for disabled kids. It was a regular school, but the classes were in the basement and they only had disabled kids in the classroom. So you can see really at that period of time, from an inclusive perspective where kids are going to school socializing that wasn't happening, but my family was great. And so I was very included in our neighborhood, in Brooklyn and with our family. So between blend till after three o'clock in the afternoon, it was just basically me and my mom. And then when I was nine years old, I finally did start going to school. Although the education wasn't good Speaker 1 00:07:44 That you're a fire hazard and is something that sadly continues to happen. I was at the theater here in Atlanta, and I was told that I had to get out of my wheelchair because I couldn't have the wheelchair in the aisle. And this reoccurring theme that continues to happen. We see over and over again, is that feeling of being left behind or that feeling of you're out of place. And what are some of those thoughts that you have and how we can go about working to change those attitudinal barriers? Speaker 2 00:08:25 When that happened? Speaker 1 00:08:28 Sadly, I had, I was with my sister and she, we obliged to what they said, and I think Speaker 2 00:08:35 Wheelchair seating in the theater they'll just file a complaint. Speaker 1 00:08:41 We didn't actually. And so that was something that we could have done and should have done, but in the moment I think it was just so embarrassing. And really, we were really taken aback that we were told that, and my sister was just like, come on, let's just do, it's fine. I pick you up all the time and there's no problem. They're like, and they'll take your scooter away. And that was the time when I was still transitioning in and out of a scooter. And before I started using a wheelchair full time. And so it was, it was okay for me to be able to stand up and get out of it with assistance. But now, if someone were to tell me that you're in the way I would have been like, heck no, I'm not moving. Speaker 2 00:09:23 I think it's a really important issue that you raised carton. And I have a funny story to tell you, it was in the eighties when I was living in Berkeley and it was before the ADA. So the Americans with disabilities act makes it illegal to discriminate, but only if the entity is getting money from the government. So until the Americans with disabilities act was passed, a movie theater owner was not covered. And there was a theater in Oakland, California that was doing the same thing. It was saying, if you used a wheelchair, you had to get out of your wheelchair and transfer into the seat. Well, two of my friends and myself, neither of us could transfer. None of us could transfer. So we decided that we were going to go to this movie theater and we would basically force them to have to do something more publicly. Speaker 2 00:10:21 So the three of us went, we also went with some non-disabled friends for friends that didn't have visible disabilities. And we've developed this plan that we would try to get the tickets would go inside. And if anything happened, the other people we would with we're going to be going sh. So when we went in, they weren't going to sell us tickets and we made them sell us tickets. And they said they were going to call the fire department. And we said, good call the fire department. So we sat in different parts of the theater and fire department came and we all work at the center for independent living and worried about and gave them our cards when the fire department came in and they started talking to us and our friends are going, so it was disrupting the movie. And, uh, as the end of the movie we left and they took out of the theater because they knew that we were serious about it, but we were older than you. Were you, how old were you when this happened? Speaker 1 00:11:30 Um, so about five years ago. So I was 20. Speaker 2 00:11:34 Yeah. And that feeling is the one that I really relate to that feeling of embarrassment and humiliation, and also that was happening for your sister. So, and I've had that experience where I'm somebody who I'm close to and something happens and there isn't an automatic support. And so you're kind of left in the lurch. So I think this example of the movie theater, somebody years after the ADA, I'm so sorry about that. But the actual feelings that you're talking about are ones that happen to us many days a week, where someone says something looks at at a certain way. It says something about the stabled people in general, where, you know, makes us feel well. I don't want to say it makes us feel lesser, but it does. I think forced us to come back into a reality that we at least speaking for myself that I wish didn't exist. Speaker 2 00:12:50 You know, I wish we were living in a world where we could talk about these things in the past and how they're no longer existing, but they still do. And I think talking about it as you are, is very important. And I hope that the people that are listening to this program, that you and I are very similar, we believe that storytelling is important. If we didn't believe storytelling was important, you wouldn't be doing this. And I wouldn't be doing the human perspective and other things. So telling these stories, getting aha moments, whatever they are for you, it's important for, I believe for us to think about it, to be able either publicly articulated or even just in our mind to rerun the incident, how we felt, what we did, what we wished we would have done, what we can do now, how we can share that and empower others. Speaker 1 00:13:52 Yeah. I, I definitely resonate with the fact that the storytelling is so critical because it allows people to be vulnerable. And that allows those that are listening to be empowered, to want to share their story. And we see that time and time again, when there's that feeling of safety and trust that you can share your deepest and darkest experiences of discrimination and isolation with someone who gets it. And what you're saying about the, just the vernacular and the word choice that people who are uneducated on how to talk to people with disabilities, it's, it's really, it does make you feel less than in my opinion. And one of the ones that really, I think, strikes a chord with me is, so what happened to you? And I, I've never met this person in my that's the first thing that comes out of their mouth. And I don't think we really realized that that's actually really harmful and hurtful, um, that we see from time to time again. And I think you also experienced that in your book, you described a situation where Arlene was pushing you down the sidewalk, and there were a group of boys coming up to you and, you know, asking, you know, are you sick? Are you sick? But you also moved over to the side to let them pass by as if you were you, you didn't want to be a burden or you didn't want to be, uh, thought of as you know, trying to push against the barrier. Speaker 2 00:15:34 How did you find moving over? I don't think so. I think the reason, Oh, no. The reason we moved over as we were walking in the middle of the sidewalk and they were coming towards us. And so we were going one direction. They were going to the other and my friend was moving back because I wasn't pushing, my friend was moving too, just so there was room for them to pass. And that's when the incident came up. Got it. Got it. Yeah. So, I mean, sometimes I agree with you. That can be happening. I, I think so if we could split, but we're just discussing the boy asking me as I'm sick and people asking what's wrong with you or what happened. And the reason I do that is are you sick for me? When I was like a bed eight years old was a real awakening that other people saw me differently than I saw myself. Speaker 2 00:16:32 So I think I saw myself and I see myself as someone who normally uses a wheelchair. That's just who I am. You know, just like some people like to wear pink and others like to wear green. It's just who we are. And this acknowledge this statement of are you sick meant that he not only saw me using a wheelchair, but he saw that meaning that I was sick and the word sick is something which is negative. When you're sick, you don't go to school when you're sick as a kid, you know, you stay away from your friends. You're isolated, you has to get better, but I wasn't going to get quote unquote better because that's who I was now. And there's other issue of people ask you what's wrong or what happened? I know, I understand what you're saying. And I have many, many friends who feel the same way. Speaker 2 00:17:34 Like you don't even know me. Why are you asking such an intrusive question? And I guess the way I've dealt with it in my mind is I answer the question because if a child asks you, you know, why are you in the wheelchair? We don't feel well, I don't feel negative about answering because it's an honest question. And they're wanting to ask us questions so they can move on. And in many ways I feel well it's inappropriate and makes many people feel uncomfortable. And therefore, I think it shouldn't be something that people say, not even the second thing, but you know, something when you're getting to know somebody better, that that can come up in discussion. But for me, when people ask me that question, I think of them as a three or five-year old. I think, you know, this is a question that you had when you were a kid. Speaker 2 00:18:37 Maybe you didn't see as, or your mother or father pulled you behind what we call the paper, the potato chip bag, don't look. Um, and now they're in a dump and they never got to ask the question. And so now they're asking it, and they're now thinking about it as an, in an age appropriate way. Like, how would you feel if someone asked you something like that before they really knew anything about you? So I think it's an important discussion because I mean, another thing that in the, in the seventies, when I was living in California, one of the universe medical schools had a program on sexuality and they included disabled people in the program. So we were, uh, lectures and part of the broader program at UC medical center. And there were quite a number of, of Dan said, some of us who were involved with the program for being asked to go and speak at like community colleges or universities on sex and disability. Speaker 2 00:19:48 And I always knew that if students didn't ask us more intimate questions about sex and sexuality, that they really weren't into it. They really weren't going deep enough. But I was just a friend of mine one day who was from another country, but I was giving one of these talks and someone asked a question about positioning and I just spoke about it. And later on, he said to me, how could you do that? It's so personal and private. And again, for me, it just was, I felt like most people are not going to discuss it. It really, the first time I did it in a more open way, it was a little jarring for me. But on the other hand I felt, okay, now the question is out, you know, do we have sex? Which I think is a big issue because people don't think that we're sexual that again, like the question of, you know, what, what happened to you. Speaker 2 00:20:59 It's certainly not something it's completely inappropriate in a normal setting to have those discussions so abruptly. But as I said, I do think about the fact that when we're invisible in the media, as an example. And so there aren't examples of disabled people doing things like other people are doing. They still have this misconception of who we are and they don't see us as being equivalent to them. And therefore, I think many people don't think about how would Kardon feel if I ask, I don't even know your name. So how would this woman with the purple sweater feel by my asking a question like that? I was in an elevator once with a good friend of mine. And we were both working at the world bank and this guy came in the elevator and neither of us knew him. And he said, so what happened to you? Speaker 2 00:22:04 And my friend, like kind of ripped him one and said I had polio. So, I mean, yeah, I think this is very personal and I really respect how people respond. And I think for the non-disabled the audience and also for some disabled people with different disabilities, I think they have the same questions because they haven't met people with all types of disabilities. So how do we have, you know, a bigger discussion like we are now that people really can understand how hurtful this can be and for some people and how it's invasive in a way that doesn't happen for non-disabled people that don't really know why I've always felt like I typically will answer those questions, except that I've always, as I said, but, well, these people who aren't adult body clearly still have a child's mindset Speaker 1 00:23:14 Set, a lot of really great points on representation and sexuality and all the things. Yes. I do think we're severely lacking in all of those. When you going through middle school, sex education, did you ever see a person with a disability in any context? Absolutely not. And that's the problem, right? Because we don't have that growing up in our early education. And what do you think that we should be doing to those teachers to start teaching disability culture and inclusion? My mom's a teacher, she's a fifth grade teacher and she was really surprised that there just really isn't any discussion about disability history and the movement of the Americans with disabilities act. Speaker 2 00:24:02 Well, I think it's happening slowly. And in some States it's really being driven by younger disabled people like in West Virginia and California, a number of other States where they've lobbied at the state level and gotten a disability history as a requirement to be taught in the schools. So I believe it really needs to be a combination of younger, disabled people, older, disabled people, educators in general. And you know, I, I also think that this issue of representation in general is something that as disabled people, we talk about it, but I think I was more seriously. You know, you think about things more seriously, one day then another, but last night I was looking at the issue of, um, diversity on television and in advertising and in movies. And, you know, as I said earlier, I'm 73 years old. So television really was just coming in in the fifties. Speaker 2 00:25:20 And you know, when you look at what's gone on in the last 50, 60 years in television diversity, racial diversity, sexual orientation, diversity, religious diversity on and on. It may not be yet where we want it to be. But when you look at disability compared to any of those other groups, we are just not there. I mean, it is so infrequent that we are seen or heard. And I think representation is very important. And I also believe just like the story we were telling each other earlier about how we felt in the movies theater, it's important to allow disabled people to feel that it's okay to discuss how they feel about lack of representation. Because I believe if we're more public about the absence of appropriate representation by disability, by race, by sexual orientation, religion on and on, um, people continue not to think about us, right? Speaker 2 00:26:40 They, they just, they don't think about it. They don't miss it. We're the ones who miss it. I mean, I get honestly more and more angry at the lack of representation, not just for younger people, because I think in the disability community, we really need to recognize the fact in a meaningful way that many people acquire their disabilities when they're older. And because we don't really talk about disability and nuts from an intergenerational perspective, I also feel that, you know, you've got this huge percentage of people who didn't have a disability thought about those of us with disabilities and a way where they were afraid of us afraid of becoming like us. And we've never at deep enough discussions about how disability is a normal part of life. And from my perspective that you need to be, you need to be acknowledging that for many reasons, but one is, what do you want your future to look like? Speaker 2 00:28:03 You know, do you want to be when you're 60, 70, 80 years old living in a nursing home or a more restricted setting because home and community based services are not provided in a way that are affordable and enable you to live your life as you wish. So I think the broader we can make our movement, not just with the 61 million disabled people of which, you know, if, if we had 10 million disabled people speaking, like we are speaking, that would make a tremendous difference. If we allowed the industry to see that we were not going to purchase items, we're not going to go see films where disabled people are not represented. We're, non-disabled people are playing roles of disabled people on and on. I think we would have an impact. And we started this part of the discussion, really looking at elementary school and how there's nothing really in a meaningful way about disability. And I do think it is a critical issue. There is work being done on it, but it's so slow. And so I really feel as you do that, we need to have our foot on the gas. And we need to allow people to understand the adverse effect of not seeing oneself and learning about oneself in a way that makes us a normal part of life. Speaker 1 00:29:47 And I, to your point, I think it's more than just having a seat at the table and the representation, but being able to craft the scripts and the storyline and the setting so that you are incorporating people with disabilities in day-to-day activities, and they're not being portrayed as this inspiration or this really tragic, sad story. And they died the end or Speaker 2 00:30:17 Kayla person. Speaker 1 00:30:19 Yes, exactly. And the other thing that I think we're lacking are those subconscious and the background setting in the themes where we're not really highlighting the elevators in the ramps and like the sec and showing this separate but equal access in the sidewalks or accessing a place. And what that lens looks like when a person with a disability say, goes to the movie theater and their seat, and they're filming them, going into the movie theater and their seat is all the way at the very back, like the, that the camera needs to move with the eyes and the, the way that the person with the disability actually goes about their everyday life, because that's the true story. Speaker 2 00:31:09 Yeah. And I think that, and, you know, you can tell movies that were made in different time periods, where the curb cuts and they weren't curb cuts that something that you see more visibly, but you don't, as you were saying in the movie theater, see the accessibility in there and just naturally having, you know, people going into the movies and somebody's using a wheelchair or cane or whatever, and just going in with the crowd and sitting down naturally and seeing where that person might go. So this natural kind of movement isn't there, but I also feel that the hurt and the pain that we were discussing about the incident in the movie theater or in the restaurant or at the job or wherever, that is something that I feel is important for people to hear and feel it's not just to be empathetic, but it is to actually begin to relate to the discrimination behind that, you know, telling you that you've got to get at telling you and me. Speaker 2 00:32:24 And cause that's definitely happened when I was growing up all the time and all the time, my father would take me out of the wheelchair and put me in a seat except on Saturdays. When we went to our movie theater in the neighborhood and allowed me to stay in my wheelchair just because we came all the time, but it's discrimination. And I think it's a word we need to use more frequently. That act was discrimination. It was that only a violation of the law, but it was discrimination and it was not seeing you as a human being. And I think that's really the point that we are needing to get across to other disabled people that we have rights. We need to demand those rights. And other people need to understand when they are violating the law, but also from a humane perspective, you know, putting themselves in our position and recognizing how would you feel if this is what was happening to, you know, to your daughter or to yourself. And I think too frequently, these acts keep people from coming out from doing things where they feel they may get a negative response and they don't want to deal with it. And for me, I think what we really are saying to people is be empowered, expect that it may happen when it doesn't happen. That's great. But if it does happen, understands that it is okay to come back with a response that allows so much to know you're not going to accept what they're doing. Speaker 1 00:34:10 Yeah, yeah. This, the symbolism that I remember reading really, uh, in your book stuck with me, of you sitting outside screaming Arlene's name until someone opened up the door and came down because you didn't have the equitable access to get into her house. And I feel like I'm that kind of person, a lot of times sitting and calling and raising my voice and saying, please see us, hear us and, and, and waiting for someone to come and actually acknowledge the fact that we are people and that we exist. And, um, thinking about, you know, where are next steps and how do we transform that physical state of waiting on the outside and, and continuing to move forward. And what are some of those things top of mind for you, if there's like an ADA 2.0 or other issues that we should dismantle. Speaker 2 00:35:13 So if we can take this example of part where we look at the issue of housing, uh, there are by and large, I don't believe any States that require that renovation of housing, construction of new housing. That's like individually owned be accessible. And if, you know, there are various housing laws that for certain types of housing that's being developed in federal and non-federal money above a certain number of units, they have to be accessible, blah, blah, blah. But when you think about one of the ways that people socialize is to housing, right? You get invited over to your friend's house. Well, I don't know about your neighborhood, but the neighborhood that I grew up in Brooklyn, our has had a ramp that my parents built on it when they sold the house, the people who bought it, took the ramp out that to me, when I went and saw the house a couple of years ago was astonishing because Speaker 1 00:36:24 I wonder why if they thought it was ugly or no one would use it all of the above. But, um, Speaker 2 00:36:31 But the bottom line is this couple, wasn't a young couple. They were in their forties or fifties. So, you know, that thinking about possibility of meeting a ramp for themselves or having a friend or relative to come over. So I think housing is another area where we need as a society to recognize that having is more than a place for one family, the lip, it's a place where you invite friends and family to come and by not having housing that is accessible. It not only potentially denies the buyers of the home, not to be able to stay in place, but it also excludes many other people. And, you know, we get into this whole discussion of when you're using your own money, you know, you shouldn't have to build things in a certain way. I think we need a different discussion. I think we really do need a discussion where we can get a broader sector of society to recognize the importance of accessibility or what we really could be calling universal design. I mean, it takes depth. Another issue that we still know, we look at disabled people as having special needs, right? And I think, you know, you and I, and hundreds of thousands of others, Speaker 1 00:38:16 What is special about it? And it was just needs Speaker 2 00:38:21 By calling it special around disability. It's kind of the kiss of death. I hate that I hate to special needs. So, but you know, when we look at our lives overall and that we need to be doing, we need to be more organized. We need to feel more confident in who we are. We need to understand what our rights are and we need to look at what more needs to happen, what additional laws we need. And I would say that one of the big areas is home and community-based services. I would say housing as we've just been discussing, not just for new housing, but also the ability to renovate housing, you know, to put a ramp in, to make a bathroom accessible things of that nature, where there's typically no funding available for that and education, obviously. And in that regard like for children, young adults, I think we need more money going into programs. Speaker 2 00:39:27 So parents can understand what their rights are and can be advocating more. I think centers for independent living and other community-based groups need to be receiving more funding to ensure that people understand their rights. If they have access to services that these organizations can really heavily be involved in addressing city and County and state, as well as federal public policy and budgeting. And ultimately I think the breadth of our community by disability, by age, by race, et cetera, really makes us an amazingly powerful community that I think really, as it moves forward, our movement positively impacts all other movements and we're all learning. And I think we need to learn quicker. Speaker 1 00:40:29 Yeah. Housing. That is a huge topic right now, especially for me. I live in an apartment independently right now. That's where I'm at in my progression. Who's to say where that's going to change in five years, but I pay a ridiculous amount of money in order to live in the middle of the city so that I can access the grocery store by myself so I can access healthcare if I need it and whatnot. And when I was looking, um, so our city of Atlanta released their housing, some supplemental supportive housing and affordable housing. And they're all on the outskirts of the city. And the fact that we have horrible issues with sidewalks and transportation and whatnot. It just an issue that I face. I have to pay a lot of money in order to be able to live independently and access this, all of the things that I need to live my life and my parents right now are looking to downsize all the kids moved out of the house many years ago, and they want to downsize into a much smaller house. Speaker 1 00:41:29 And they have been looking and looking and looking for months and months, trying to find a house that would be even remotely accessible for me in terms of door widths and frames and hallways and whatnot, and just being a little bit more spacious. And it, they just don't exist. And looking, I was doing my taxes the other day and the amount of money that Georgia provides as a stipend. If you do decide to model your model, your home is only up to like $500, which that's that's that that'll barely buy you a ramp. And yeah, so yeah, just a lot of issues. And I think what we can, what we're learning from you and previous generations and where we're going in the future generation, my generation and other generations that come after me is just continuing to speak up for change and just continue to press forward working with those local legislators, but then working to empower the people with disabilities to fill those positions so that they can convince others that it's important. Speaker 2 00:42:43 I mean, I think that, you know, one of the values of discussions, you know, between you and me and others is we are intergenerational. We have experiences that I had years ago that most people don't experience today, which is great, but then we have these experiences, which we continue to have. And, um, I assume that you have a good job and you're earning a decent living and that money is enabling you to fades or personal assistance. I don't know if that's true, but for me, it certainly is true that in the last 30 years, I've been fortunate enough to be able to have jobs that were paying me a decent living and a substantial amount of the money that I earn. I paid for personal assistance. And I pay exactly, as you were saying, to live in this city, um, where I'm near public transportation and stores and other things that other people, if they don't have the money can't afford to live, where we're living. Speaker 2 00:43:50 And, uh, the subsidies that are provided in this case to personal assistance are basically means tested. And so in many, many States, the amount of money that you can be earning is not that much. And so it really puts people in a place where they have to choose between working and being able to take care of their basic needs. And so again, this issue of intergenerational discussions is really important so that people see that personal assistance, as an example, is something that people need that enables us to be able to live our lives much more like other people, but that it is more expensive, right? Because we can't, we don't drive or we don't wish to drive. I can't drive. I don't know about you, but more in-depth discussions that are going on intergenerationally to deal with those of us. Who've had our disabilities when we were younger. But for the other people who are getting older and acquiring a disability, and this story that you just told about your parents is a very important story because it's not just your family, right? Your parents have three kids, normal things are happening. People are moving out of the home, they want to downsize, but you're their daughter. And they want you to be able to come and visit them whenever. Right. And so the restrictions that are being placed on them and you, and so many other families is something that's typically not thought about. Speaker 1 00:45:43 And they're also getting older. Right? And so those are other considerations, you know? So once intent, some of the parents are 62 ish, you know, in 10 years now they're thinking about, okay, well, we're going to need ramps. Are we going to need elevators? Are we going to need care lifts and toilet seat risers? You know, cause those are the things that are helpful as you naturally age. Right? I think the other thing, which is such an interesting parallel with kind of tying it all back to education, cause that's where it all started in something you were really passionate about was today, or back in the day, you, you were discriminated against and you were told no to go to school. And yet today, now we offer virtual learning because of a pandemic. But I don't think that would have happened if it weren't for the pandemic, in my own opinion. And we're changing systems, just the way that life continues to progress. And it's allowing the children with disabilities who, who can't get out of bed in the morning because the sensory overload or the mental health, or however long it takes to get, to get ready to get, to go to school. And now they get to be able to sit in their, in their bed and be able to be educated and empowered. And I think that that's really cool just to see the change in. Speaker 2 00:47:04 But I think there is a real problem. Many kids, Speaker 1 00:47:08 There are a lot of challenges to Speaker 2 00:47:10 Kids with and without disabilities are not succeeding because they don't have the support they need. I think the point that you making, which is important is that virtual activities are enabling things to happen. That we didn't necessarily, we weren't necessarily open to in the past. But I also think that those of us with disabilities, we have to be really careful because before the pandemic people thought, Oh, the panacea would be for all the stable people to be able to work out of our homes. And that has to be plagued by having to go to the office every day. And I don't think that's what you and I are saying. We want to be able to have flexibility, like our peers who need flexibility, but it shouldn't be that because Cardman Judy use wheelchairs. Oh my goodness. They, life is such a struggle. Let's let them just work out of their home all the time. Speaker 1 00:48:12 Oh yeah. Definitely not what I'm on. No, I definitely agree with the flexibility option and yes, there are, there are a lot of services that are left out. Things like captioning things like just being able to have that direct one-on-one attention that you need in order to receive the information and actually understand it and apply it Speaker 2 00:48:34 And to collaborate with people, you know, in your office and go have a cup of coffee and just chit chat about what's going on. Because really things like promotions in jobs are certainly partly based on productivity, but it also is, you know, how you get along with other people, how people perceive you, how they relate to you. And if you're not there, if you're invisible, I was talking to some people the other day who've been doing a lot of virtual work. And one of the people was saying, you know, in this group of people, a number of these people knew each other before the pandemic. And I came in and I didn't know anybody. And so the people that knew each other gravitated towards each other, not for any negative reason, but they didn't know me, you know? And so they weren't learning about me except in the virtual state for the number of minutes or seconds, we were able to give to people when I very much believe that there needs to be a combination. I really believe that interaction with people is that only beneficial for us as individuals with and without disabilities. But I do also really believe it helps with creativity. It helps sharing ideas, not just in a 30 minute period of time, but you could just pop over and say to somebody, or I was thinking about this, what do you think about that? If you don't do that virtually. Right. Speaker 1 00:50:10 And I think also for the disabilities that are visible, like you can't tell right now by looking at us that we use wheelchairs because we are, you know, shoulder up and that continues to reinforce the, the lack of representation out in public and seeing people with disabilities that have visible disabilities out and about doing their everyday lives. So, yeah, it's a, it's an interesting, now I'm thinking more about it and what you said it's, uh, coming up with new ideas and thoughts of, yeah, it sounds like a great idea in theory, but I think there's also other repercussion, bad things, you know, pros and cons with anything. So, well, thank you Judy so much. It's been such a pleasure chatting with you, just talking about family and education and representation and housing and all the things and where we can go from here and with intergenerational. So I very much appreciate it. Thank you for all the work that you're doing. Thank you for all the work that you're doing and that we're doing. And ultimately it's, we build off each other. So thank you for the work that you do. Thank you. All right. Bye bye. Speaker 3 00:51:25 Thank you friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.

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