May 19, 2020
May 19, 2020

Disability Power Series: Judy Heumann

A conversation with human rights activist Judy Heumann. In the spring of 2020, Judy appeared in the documentary Crip Camp and also released her memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Following the New York School board banning Heumann from being a primary school teacher, she became engaged with disability rights activism leading to the passage of the Americans with Disabilities Act. She went on to work in the Clinton Administration and serve as the Special Advisor on Disabilities Rights for President Obama.


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>>EMILY BLUM: This is Emily Brumm speaking, executive director of ADA 25 Advancing Leadership. Thank you everyone for joining us this afternoon including so many Advancing Leadership members and those who made a donation to support the accessibility of this program special and series.

Quick and most important a note on disability. We sent out a guide on accessing key features in Zoom including both CART and ASL interpreters. But if you have any challenges accessing these, please the. Those of you who may be unfamiliar with ADA 25 Advancing Leadership, we are a network of positive disruptors all people with disabilities who are using our power to create an equitable and inclusive society. We believe our experiences, ideas and leadership as people with disabilities are vital to achieving justice. Thank you for attending our disability power series and today's conversation featuring lifelong human rights activist, Judy Heumann. Judy's recent memoir, Being Heumann, is a fascinating portrait of her life and the disability rights movement. And this week the audio version will be released featuring the Tony award winning actor Ali Stroker. Judy is joined by Tuyet Le. Tuyet is an Advancing Leadership Member, current nonprofit consultant, and former executive director of Asian Americans Advancing Justice Chicago.

A few housekeeping notes and thank yous before we begin. Please join the conversation. Submit your questions via the Q&A function at the bottom of your screen. Later my colleague Alex will be posing your questions to Judy and Tuyet. This is being recorded so we can share it with those who are unable to attend. A big thank you to our sponsor and board member Ann Manikas for making this and other events possible and accessible. Lastly, if you are a person with a disability living in the Chicago region and are interested in joining our community, we want to hear from you. In the chat box we'll put a link to the website and how you can become a member.

And with that, I'm going to turn it over to Tuyet and, of course, the incomparable Judy Heumann.

>> TUYET: Thank you so much, Emily. I'm extremely excited. Just as a visual description for folks, I'm an Asian woman wearing black glasses and my background is a flowering tree. Judy, I'm so excited to talk about your book. I found your stories so honest and inspiring and a master class in community organizing. That's my background as well so I have tons of questions for you. But it was also incredibly illuminating for a part of American History that I was never taught and yet it so profoundly changed the trajectory of my life as a disabled person. So because this is a disabilities power series, my first question for you, Judy, is how did you become such a badass?

>> JUDY: I think in many ways my mother was a badass that she would never acknowledge she was a badass. She was very active in -- it's something that she learned, right? My mom and dad are Jewish and my mom was sent out of Germany when she was 12 years old to live with relatives in Chicago actually, that she didn't know. And my dad left Germany when he was 14 and he went to Brooklyn. Their story is great. They met in Philadelphia and did all of their communication, including getting engaged, through the mail. And they got married in 1946. I was born in '47 and had polio in '49. So my parents, like even parents today, really learned at that point that things would not necessarily go the way they wanted. The difference in 1949 was we had no laws in place. And when my mother tried to get me into school when I was five, I was denied the right to go to school because I was deemed a fire hazard. And the book will explain a teacher came to my house twice a week for two and a half hours. So I think my parents were gradually learning that they wanted to be able to give me a good education, that the system was not on a parallel track with them. I got into school when I was 9 years old in the fourth grade. But I think the first time my mother was a badass in today's language was when she organized with the other parents, primarily with women, because at that time if you were a wheelchair rider, you didn't go to high school, you went back to home instruction. My mother and other parents organized and the city made a number of high schools accessible throughout the city. So there were those kinds of incidents that happened throughout my life where my mother and my father basically did something that they weren't used to. And then my mother, I went to Long Island University in Brooklyn, but then I went to Berkeley, but in that period of time our neighborhoods were being redlined, meaning that there was a big scare going on to get white families to leave our neighborhood saying that property values were going to go down and my mother was active in a local organization and was fighting the banks. So it was those kinds of things. It wasn't just in the area of disability. She never was a person who wanted the limelight. She was always someone in the back, going to meetings and speaking up. So I really think that and my dad really, at some point I realized that I had to get over my wanting to run away, that something bad would happen. I talk in the book about a couple of incidents that happened that really made me feel very uncomfortable, like I wanted to disappear, like could the Earth open up and suck me up. But when I was in college and decided I wanted to be a teacher and then was denied my right to be a teacher in writing because I couldn't walk, I think that's really a very pivotal time in my life that I had to make a decision. And I was lucky I found an attorney who called me to interview me about a book he was writing. And I asked him if he would represent me and he did.

>> TUYET: Wow! Yeah, there are so many ways that you were connecting with people and all of these things coming together right around you. There are so many things that resonated with me because we actually have a lot in common. I also had polio at a young age. My family came as refugees from Vietnam. Even though that I have identified as a person with a disability, I don't know if I would claim that I had disability pride until very recent. And definitely now because I think it's partly a lack of role models. So I think just having you and the book and the movie Crip Camp, right? I think there's a community to identify with that has pride. That was really exciting.

>>JUDY: I think the issue of lack of role models is people always ask me who was my role model. And honestly, there were no women around. My mother, you know. Mrs. Roosevelt, President Roosevelt, but not any disabled people at that time. I didn't know any. I knew really very few disabled men or women at that time. Now I think it's so important that we're all role models. I think everybody, you know, Emily, and everyone else, we're role models to other people. And I think what's very important is we also feel a responsibility to mentor people. It's not just to be a role model abstractly, but really to, I think, help people because of what we didn't have when we were growing up. I think it's been important, at least for me and I'm sure for you too to really help fill a void.

>>TUYET: Yeah. And I think most of my work has been in the Asian American community so I think there's a lot of parallels of not having role models as I was growing up. And then just the ways we talk about being invisible, right? Being defined by others and resisting all of that. So I had that in terms of my disability and my Asian Americanness as well. So it was just amazing to read another person's, like the things you went through and were feeling. The beginning of the book, you start out by noting that you were very resistant to writing your story. I'm curious, especially after this note about role models, how do you feel about it now that it's come out? What are you seeing as people's reactions?

>> JUDY: I very much appreciate people's reactions because they're very similar to what you said. I think for disabled people, they see themselves in the story. And what we tried to do, because I wrote the book with Kristin Joiner. And what I really wanted to do was to be as simple as possible. And to tell the stories as authentically as possible so that other people could put themselves either into the story or could start thinking about how to tell their own story, which I think is ultimately very important. We need to tell our stories on a regular basis so that the more we tell our story, the more we both help other people and I hope the more the media really gets involved with recognizing that the disability know community is underrepresented. In every aspect of media. But our stories are as rich as other people's stories. And our absence is a major problem. So I think one of the important parts about my book and Crip Camp is that people are both seeing themselves but also saying why didn't I know these stories.

>> TUYET: Yeah.

>> JUDY: And as people who have responsibility and capacity in media to tell these stories, I want that to be happening more. But I also feel that it's really important for those of us with disabilities and allies to really be more demanding of the media. I think we really need to be holding the media accountable. And when we talk about, as you were saying, Tuyet, not seeing yourself, the absence of self, that's very important. And I think advertising agencies, Amazon, Netflix, all these networks, really need to see that we have got buying power and we don't like the way we are not being represented or when we are being represented, how frequently we're being misrepresented.

>>TUYET: Yeah, absolutely. You know, so we had a short conversation before this and we were talking about storytelling, but that in a lot of the stories in your book you reference too is that they come with pain, right? Especially as people with disabilities or people who are at the margins, right? But often those are the most powerful stories, right? And the ability to express that vulnerability. Can you talk more about what would you say to someone who is hesitant to tell those types of stories, especially publicly, telling their own stories?

>> JUDY: So I would say in the privacy of your room, the privacy of your head, start thinking about important parts of your life that you haven't shared. And you're talking to yourself. So don't hide anything. And I think then trying with other friends or writing it down or however you want to express it, sharing some of those stories and seeing people's reactions. I think in the end, for me at least, it's an empowering experience. And I feel like many people that I know, when we encourage people to tell their stories, it also makes that person a richer person not only recognizing themselves and being able to say things that they were afraid of saying, but I also think it enriches your friends and your family and people you don't know. Because I did an interview yesterday with a woman who was doing the interviewing who is working for an organization and she's a wheelchair user. And she was hired and the bathroom was not accessible. And you know, she was the only disabled person in this group and it was difficult for her to really be speaking up about it. But she's been able to do that. And I think being able to speak up about it and really getting them to make a bathroom accessible is very important. Because I know too many people who will not drink and won't go to the bathroom because they can't do it themselves, because the bathroom is not accessible. And no one understands that you can go for like a day without drinking or you don't drink between these and these hours. Most people have no clue about that. And I think it's those kinds of things that are very important for people to understand what do we, as disabled people, regardless of our disability, what are some of the things that we have to do to try to fit in. And things that are fixable, like this organize never should have rented a space that didn't have a wheelchair accessible bathroom or before they moved in, they should have made sure it was wheelchair accessible. You can pick a disability and whatever the issue may be, when we have to feel ashamed or afraid about speaking up about things that are the truth. I also think it's important to talk to other people on the margins and find out their stories. When groups are moving from the margin into creating their own organizations or becoming a part of the workplace or community, whatever it may be, how did they feel? What were some of the issues that they were offended by when people said certain things or they were afraid to speak out because they thought it would make them appear to be less a part of the group? I think the discussions that we are talking about happen to marginalized people all the time. And it happens to women all the time too.

>>TUYET: So in the book there are so many instances where it's really clear that you are almost obsessed with being inclusive, right? And networking and things like that. One of the things I thought was so fascinating was during the historic sit in that you had, your meetings would last until like 3:00 in the morning so that everyone would have a chance to communicate their ideas and what they thought. So that's a real practice in organizing, right, that patience? And you even see it when you're 18 and try to figure out whether people wanted lasagna or not.

>>JUDY: I think that scene is hysterical.

>>TUYET: Yeah! Tell me how you developed that practice and that patience.

>>JUDY: Well, you know, honestly, sometimes you're patient externally and not patient internally. It's like I know I need to do that because it's respectful but inside you may feel differently. But I think, again, I think my parents had a lot to do with it. And also I think in part it's because I think that for myself and for many other people, and I think you see this very much in the film Crip Camp, one of the reasons we're respectful of each other is because we value each other. And we knew that it might take someone longer to say something or to process something or whatever it may be, but in the end, it was a contribution that was worth waiting for.

>>TUYET: You were practicing equity. Right?

>>JUDY: Yeah, to give it a name.

>>TUYET: Yeah, just giving people the space that they need, right? Not just hurrying at your pace.

>>JUDY: And also giving -- it takes me longer to do a lot of things. And so I think it's also trying to lead and live by example.

>>TUYET: Yeah.

>>JUDY: You know, in our house where we grew up, we lived in a middle class neighborhood in Brooklyn. And when my parents bought the house, I didn't have polio. So they had to build, luckily my father was very resourceful and they extended the house and put on a ramp and a bedroom and a bathroom on the first floor so that I wouldn't have to be carried up and down stairs. When they did that, they really didn't have the right dimensions. So I could never get to my closet in the bedroom. The bedroom was small and we had a small bed that it was made because the room was small. And I could never go and check out the closet myself. The wheelchair couldn't get there. So I was always, like, dependent on my mother getting me my clothes. And I had two brothers. And they were younger than me. So she wasn't into dawdling, like we gotta get this done, they gotta go to school, I have to do this, I have to do that. I think that was a little bit of where I started learning about the importance of patience. I couldn't push my wheelchair, there were no motorized wheelchairs at that time. Things I did were done slower. I don't know, I think it was just something that happened. I didn't plan it. I think it was as much for me and is as much for me as it is for the people that I'm with, because as I said, I believe we all have things to contribute.

>>TUYET: Yeah, yeah. That's amazing. So one of the great parts of the book, there are a lot, but the 504 sit in was riveting. It could be a movie in and of itself and all great organizing stories are. I really cannot believe that I hadn't -- I mean, I more recently learned the story, but this should be in history books and taught. So 504 regulations, you were trying to get them to sign it. And the sit in lasts 28 days. It's probably the longest if not the longest take over of a federal building. What kinds of things were going through your mind when this is happening? Why do you think people lasted that long?

>>JUDY: 22 of us left the building and went to Washington, DC. There was a core group that was there for the 28 days. I was there for many days and then with this group we went back. I think people stayed because they recognized that they were a part of history. And by that I mean they were coming out as disabled individuals. Some people went in that were really involved in the movement. Other people came in who were relatively newly disabled. Or even if they weren't, they'd never in some way put themselves on the line. And I think it was really very, very important that people felt very accomplished at the end. They felt proud not only of themselves but of the group.

>>TUYET: Yeah. And I think what was amazing is that it didn't seem like anyone even thought that that was going to be happening, right? So many times, at least these days, people prepare to be arrested and they have all the stuff they need with them. But you brought your toothbrush, but other people were like wait, what?

>>JUDY: I think what happened, a few of us were thinking that we should think about the possibility that we are going to have to stay in the building. And what happened was, and you see this in the film and the book, when we had a committee that was very organized and had been working for four to six weeks in the Bay area, including a few people meeting with people from health, education and welfare in San Francisco. So there was a planned meeting to happen. And when we got there for the meeting, we fully expected that the regional director for region 9 was going to know what we were in there for. We were in there for what was happening for the 504 regulations, what were they looking at revising? We wanted an in-depth discussion. What happened was neither the regional director or any of his staff really had taken what we were doing seriously. So no one knew what 504 was, what the issues were. And I think people felt very angry. And I felt and Kenny Comb and others, we were completely blown away by the fact that they were so totally unprepared. So when we said to people we need to stay, will you stay because we thought oh my goodness, we are going to leave the building and we knew that what was going on was that in Washington, the secretary of health, education and welfare, Joe Califano was doing a serious review that would have potentially really weakened the regulations. And we were the strongest group in the country at that time, in the Bay Area. And yes, we weren't in Washington, DC so the coverage we were getting was not national in scope most of the time, but it was very much in the Bay Area and it was in other parts of the country from time to time and it was international from time to time. So I think the way we had the group structured so there was a communication group, a rec group, a media group, on and on, people had things to do and fully recognized that they had a responsibility. I'm really sorry, guys, I have got get off for one minute. I'll be right back.

>>TUYET: Okay. Well, we don't have a commercial to show you. Oh, well, actually, I will take this time to encourage everyone to put your questions in the Q&A section. I will be turning this over to Alex in a little bit so that she can read your questions out for Judy. So this will continue with her very shortly. So perfect! I just reminded folks about questions.

>>JUDY: Okay.

>>TUYET: So one of the things you talk a lot about and I've heard you with interviews say that one of your great attributes is networking. And I like to think of it as community building. Can you say more about the power of networks and doing that work?

>>JUDY: I think it's because I'm an extrovert. And it's also because I recognized early in my life, because when I finally did start going to school, I was going to school for a number of years with disabled children and went to camp with disabled kids. It wasn't until I was in high school, like in my sophomore year that I was taking all my classes with non-disabled kids. But my homeroom was with disabled kids. So I was really very immersed with disabled people. And we were thinking about many things. Our regular day-to-day lives and dating and things of that nature or not dating, experiences in non-disability communities, but we were also, over those years, beginning to think about how we wanted our futures. And we were recognizing that the world was not looking at us as they were looking at like our brothers and sisters. There was an expectation for our brothers and sisters, and it wasn't that there wasn't an expectation. My parents definitely had an expectation for me, like my brothers. I was going to go to school, I needed to get a good education. But when you talked earlier that we didn't have role models, that also meant we didn't know a lot of disabled people who were working. And when they were working, they were not working in many kinds of jobs. There were more narrow kinds of jobs that people were going into. So when we started to not only talk about teenage things but also started to think about our futures, we were beginning to recognize that changes were going to have to be made. And I think we respected and valued the fact that doing things together would benefit a larger number of people. I mean, for me, and for many of my friends, it's never been anything that we thought about doing on our own. People may do individual things, right? But at the end of the day, when we were looking at major issues like changing laws, changing laws doesn't typically happen with only one person. Usually you need to have many different people, right, who are both explaining what the problem is, coming together for the solutions, working with other people in the group that could be affected positively, working with people who have responsibility for making laws or policies or giving money or whatever. But the more we are together with a more unified voice, the quicker things may happen.

>>TUYET: Yeah, I think in organizing we talk about organized money has power, but organized people have power, right? So trying to connect.

>>JUDY: It allows people to see that they have power, that's a very important point. And one of the reasons why our movement has moved forward is because more and more people, when we get together in groups, learn that our experiences are not that unique from other disabled people. And we learn from each other. And we support each other. I think, for me, it's still very important to be able to talk to other friends who have similar experiences and get support from them.

>>TUYET: Yeah. Just what you were saying, I think a lot of times disabled people are deemed dependent, but it's really an interdependence because we have so much to offer and teach others. Like even making laws, like how do you know how to make them work well if you're not asking people who are affected. So there's this interdependent circle. And what I learned of that, right, that was really where a lot of power was coming from, that I wasn't always dependent. In fact lots of times people were dependent on me.

>>JUDY: Yeah, and I think really, I don't know for you, but my mother and father's side were all immigrants. And in the beginning we spent time together. Families really did things together on the weekend. My father had a butcher store with his brother, other cousins, everybody was in a certain field of work. We went to synagogue together, we got together on the weekends. And I think for me that was also something that was very important that the family did support each other. I think that's really the basis, at least for me in many ways, to really value that.

>>TUYET: Yeah, yeah. So I got a signal for one more question. In addition to your parents, you dedicate the book to Marca Bristo, who was the founder of Access Living and she was actually the person who brought me into the Disability Rights Movement. What do you want people to know about Marca?

>>JUDY: Marca is a phenomenal example of resilience. Marca acquired her disability when she was in her 20s. And in the very beginning, after she acquired her disability, she talked about how she was thinking that she was not going to be able to go down the same path that she was originally looking at, being a nurse, and was very fortunate that a superior suggested and supported her going to San Francisco and Berkeley to learn more about what was going on in the disability movement. And I think that was like the key for Marca coming forth with the person she was before she acquired her disability because she was a strong woman, she was a political woman, she was fighting for justice in many ways, even in her younger years. And so I think Marca also was a force to contend with. And again, she was a networker. She drew people to her. She was a good listener. She helped advance the movement in so many ways. She believed in independent living. She believed in people being able to live and work in the community making contributions. She respected the entire community. People with different types of disabilities, from different racial backgrounds, et cetera. And I think when you look at Access Living, you can see that she drew people around her who believed in that vision. And so, while unfortunately she passed away, I have utmost confidence that Access Living will continue to move forward and grow and allow -- I don't want to say it was her vision. It was a collective vision of the community. And she was one of the critical people who demonstrated her intellect, her ability to articulate issues, and her resolve. And on the other hand, like all of us, she experienced painful things where it took so long to make things happen. And then they didn't frequently happen as we wanted to, with philanthropy or whatever it may be. The philanthropic community has begun over the last number of years to slowly recognize the fact that it hasn't been including disabled people in the work that it's doing. And Marca definitely, in Chicago and other places, was one of the champions in that.

>>TUYET: Yeah, thank you so much. I think they are going to ask questions from the audience, but Judy, it was such an honor to be able to talk to you today. I'm a super fan and super inspired at your book and everyone should buy the book and listen to the audio and watch the movie and do all the things that Judy tells you to do.

>>JUDY: Thank you.

>>ALEX: This is Alex. Our first question is from Jennifer. How do you distinguish between activism and organizing?

>>JUDY: Come on in. I don't distinguish. Well, you know, organizing, there's organizing on a large scale and you can be organizing your family to sit around the table, right? John, he's in the bedroom. Sorry. My husband's wheelchair needs to get repaired and the wheelchair repair person just came. That's what's going on. To me, organizing ... as I was saying, you can organize the little events. A meeting. It's being detailed. It's knowing what your agenda is. It's trying to make sure that you get the right people around so you can move forward with what your objective is. I think what is important is that we have a vision of what it is we want to achieve. And that big visions don't get accomplished overnight. There's a lot of detail that we have to be paying attention to. I talk about when I went from Brooklyn to California and started working in the very beginning of the center for independent living, I described it like being in a candy store, because at that point in time, as we know, there were no real laws that protected the rights of disabled people. And as we move forward, being able to get laws like 504 and eventually the Americans with Disabilities Act and the Individuals with Disabilities Education Act, we had to go from speaking broadly, talking about all these different problems. We had to be able to become more specific. So for me, it's like go in a candy store and pick out whatever you want, but if you decide that you really want to focus on a bus, it's one thing to say I can't get on the bus. It's another way when people come back and say, well, there's no way to make the bus accessible. Then it meant we had to get into the nitty gritty. We had to get people who understood construction of buses, who understood ramps and lifts, who were able to be able to fight back against the nay-sayers. And okay if we made the bus accessible, nobody or very few people would use it. We had to be able to demonstrate that they shouldn't be saying that we weren't going to be using the bus. That needed to understand that we hadn't been using the bus not because we didn't want to use the bus but because we couldn't get on the bus. So when I think about work that we did around transportation, and I think each one of you needs to think about a story that you have about how you organize something from small to large or how you were a part of a group that was working on something small that became larger. It doesn't have to be around disability. It can be around anything.

>>ALEX: Thank you. Our second question is from Bryan. Hi, Judy. Thanks for coming to speak today. I'm wondering, how is power a factor for you for raising disability awareness in society? And how does having power define overcoming barriers of struggling with a disability?

>>JUDY: I think about power in our movement as collective power. And I think about -- I mean, I guess I do use the word power, but I really like to think more about influence and knowledge. I really like to talk about knowledge and the importance of having knowledge on issues so that we can be prepared to counteract people who are not supporting what we believe needs to happen. Power is something that I think people can see. You know, when the fire department in Berkeley told us we were going to have to move our training program from the fourth floor to the first floor because if there was a fire it would be dangerous, and we decided no, we were not going to let that happen, we had power by being able to organize a lot of disabled people to go to the City Council. If it would have been a couple of us going and speaking to members of the City Council at that point, I don't know that we would have won. But we won because we were able to show the City Council that people were very concerned about what their vote might be. And ultimately people also were understanding that we voted. And so we showed our power through our actions. I hope that answers your question.

>>ALEX: Thank you. This is Alex again. Our next question is from Molly. Do you think the nature of organizing has changed in the age of digital media? How so?

>>JUDY: I think digital media has certainly given us an opportunity to be able to get our messages out much more broadly and also has enabled many people who previously couldn't participate the same way to be able to participate. So I think we see a greater diversity in our messaging. I think we also need to recognize both in the United States and in countries around the world that social media has not reached everybody yet. So I think it's another issue that we're talking both about accessibility, affordability of technology in social media and also recognizing that the power it has is great. And we need to ensure that no one with a disability is being denied the right to access, to be able to use social media because of lack of accessibility or lack of access. Lack of training, I think that's another whole issue that people need to be able to be trained on how to use technology. We need people who can really help people gain the skills that they need. So obviously there's also a downside in social media, especially with erroneous information that's being put out. But I think at the end of the day as a society, we really have to fight to make sure that these incredible tools are able to be used responsibly and not to coerce people and not to put lies before the public.

>>ALEX: Thank you. This is Alex again. Our next question is from Bri. Judy, I just began reading your book and identify so much with the psychological experience of your early years. Like you, though I was clearly disabled to everyone else, it took me many years to actually see myself from the outside as disabled because I saw no one that looked like me in my community. By the time I acknowledged that I was disabled and found a disability community I had many years of internalized ableism to break down. I'm curious about your experience as internalized ableism and how you see it show up in the community and advocacy work you do?

>>JUDY: Thank you very much for sharing this. I was trying to talk a little bit about it before. You know, for me, I have been working in the disability movement for so many years that I confronted personally many of the demons inside me or things that happened to me that really pained me to be able to make myself speak up and speak out in many ways. And again, I think it's very important that you share the part of you which is still emerging, because now that you've found the disability community and you're getting support from it and giving support to it, you don't have to be on a fast treadmill. You can be on a path to continue to look at how you want to be changing. And ultimately you're the one who makes those decisions. How far do you want to go? What role do you want to play? How do you want to discuss your stories? How do you want to go back possibly and say things to people who maybe offended you by the way they treated you? I think all these are very important components of our life and continuing, in my view, to be engaged with other disabled people who have similar visions of where we want to go, I think, is very helpful.

>>ALEX: Thank you. This is Alex again. Our next question is from Terry. Judy, you said in the film and in your book that you would not begin a meeting until an ASL interpreter was present. Are there occasions when you have not insisted absolutely on providing accommodations that were needed for someone to participate? If so, how was that negotiated? If not, were there regrets?

>>JUDY: In meetings like the ones we were having in the building, we always had an interpreter. If there were -- we had interpreters with us. So we weren't having to bring interpreters from the outside. When I first started doing the YouTube program I do called The Heumann Perspective, I was and still am doing a number of interviews a month that we post. And at the very beginning we would post the interview and state that we were going to be posting it with captioning like in a day or two. But that didn't feel right. Ultimately what we've done is only post with the captioning. So I would never say never, but I try. And I think the other thing is people in our community try to keep us all honest. I think as our movement gets stronger, we recognize the importance of everybody's voice. And so we do our best to be able to make sure that people are not excluded.

>>ALEX: Thank you. Our next question is from Whitney.

>>JUDY: Let me say one other thing. I think the other issue that's very important is our movement is made up of a diverse population of people. And so it's very important, again, getting back to what I have been saying, that each person within the group needs to be able to be talking about what they need to be able to fully participate. So as a group we're trying to move forward so that all modes of communication are able to be brought to the front.

>>ALEX: Thank you so much. This is Alex again. The next question ties into that in terms of invisible disabilities. It's from Whitney. I'm not only someone who identifies as a person with a disability, but I've also spent my whole adult career working and fighting for the disabled community. Every once in a while I encounter fellow members of the community who overlook my non-apparent differences and become very hostile towards me about how I identify in my place in the community. With your extensive work, how do you stay positive about the cause when you experience this type of discrimination from others within the community?

>>JUDY: Well, first, I think it's important that you feel comfortable to be able to either express that feeling of alienation to the group or to someone in the group that disrespect of someone because the disability is not visible, people don't understand how it impacts you is something that we need to make sure is not ignored. So I do think that looking at ways of trying to discuss how you're feeling and how you want things done respectfully is very important. I also completely understand that you can't necessarily do something like that on the spot. But I do think it's a very important issue because as our movement becomes more diverse, where numbers of people have disabilities that are not visible. And one of the issues I think is people really need to understand how different disabilities impact people. Everybody is different as a human being, so it will have a different impact on you as a human being. But if we don't know enough about the types of disabilities and how they can impact people, I think it's really important that we are learning so that we can, in the end, hopefully recognize that alienating people like yourself adversely effects the movement overall.

>>ALEX: Thank you so much, Judy. And thank you to everyone who submitted all these questions. We are five minutes until the end, so this will be our last question. And it is from Sophia. How do you think the current COVID-19 pandemic might change the future for people with disabilities?

>>JUDY: Well, I would say for people with disabilities and the society overall. A) I think there are going to be people who acquire disabilities as a result of contracting the virus. Two, I think we have to be very concerned and proactive about what is happening now as the virus is active and affecting people to make sure that disabled people understand how to protect themselves and as much as possible, are a part of the discussion to make sure that workers are getting appropriate protection and that. And that as disabled people we are experiencing as limited exposure as possible. I think it's also an opportunity for us to really talk about the horrible things that are happening to people in nursing homes and other residential settings. Access Living and other disability rights groups in Chicago, Illinois and around the country, we have long fought against institutionalization for many, many different reasons. And clearly what's happening right now, we're seeing that we were right. The system needs to change. We need to make sure that people are not living in these residential congregate situations and that workers are getting appropriate salaries so that the jobs they're performing are respected jobs and can be provided in a meaningful, collaborative way. I think we also need to very much be looking at what's going to be happening with the budgets. The federal budgets, the state budget of Illinois, the city budget of Chicago, on and on, because this is costing, it's having a big economic impact on our country and around the world. And we really, I think, need to be scrutinizing and demanding from our elected representatives that we look much more carefully at our budget and where our money is going and how the money needs to be coming into the community. For improved education for everyone. It brings up issues around the prison system, providing more money for education, reducing the prison population, and it has to do, in my view also, with the amount of money and we have no idea how much money is being spent on military. Huge, billions, billions of dollars that we now need to be looking at. Let me say that the virus is affecting everyone. There are people that are being more adversely affected. People who are poor and have multiple disabilities, poorer healthcare outcomes, we need to be addressing those issues, not just now where we are talking about the higher rates of black and Latin people dying. But we need to really be focusing on the importance of healthcare in the United States for everyone. And we need to make sure that the discussion of healthcare, adequate healthcare, is not taken off the table. There are going to be another 20, 25 million people who are losing their healthcare because they had healthcare from employers. We also need to become more knowledgeable. We need to really be talking amongst ourselves about the systems that we believe need to happen. And we have to hold our elected representatives and people running for office accountable.

>>EMILY: Thank you! Thank you Tuyet, thank you Judy, thank you for your stories, your reflections and your insight and your call to action. I heard it. I hope you did too. Thank you to all of our guests who joined us today. And a big thank you to all those who donated. You make this and other virtual events accessible. If you haven't read Being Human. Be sure to order your copy via IndieBound, support your local book store, there is no better town than now. Before we conclude this event we have a few announcements. Join us for Crip Camp, building power to create culture change. And Chicago artists and social justice advocate Revecca Torres. And in partnership with real abilities to [Away from mic] Chicago. Also join our network of positive disruptors. If you are a person with a disability living in the Chicago region and are interested in joining our community, visit become a member. Please consider contributing to our program at ADA 25 Slide into our DMs. Follow us on Facebook, Twitter, linked in and -- with that, have a great evening. Thank you so much.

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