Fireside Chat with Judy Heumann [TRANSCRIPT]
ELISA LEWIS: Hi, everyone. Thank you for joining us today for a very special fireside chat with Judy Heumann. My name is Elisa Lewis. I’m from 3Play Media and I’ll be moderating today.
I’m a fair-skinned woman with dark brown hair. I’m wearing a black t-shirt that says 3Play Media both in English and in American Sign Language.
Judy is a lifelong advocate for the rights of disabled people. She has been instrumental in the development and implementation of legislation, such as Section 504, the Individuals with Disabilities Education Act, the Americans with Disabilities Act, and more.
Judy has 20 years of nonprofit experience working with various disability organizations, including being a founding member of the Berkeley Center for Independent Living and serving on a number of nonprofit boards.
Judy has also written a memoir, been featured in an Oscar-nominated documentary, and produces a podcast called The Heumann Perspective, which we’ll talk about a little bit more later on. So please, everyone, join me in welcoming Judy. We’re so happy to have you here today.
JUDY HEUMANN: Thank you. It’s great to be with you.
ELISA LEWIS: So as everyone, I’m sure, knows, and as we kind of covered in that introduction, Judy, you’ve had an incredible career. I’m really excited to dive into it. We have lots of questions prepared for you today.
But to start, I’d really love to really begin the conversation at the beginning of your journey. So you began using a wheelchair at a young age. Can you share with us what it was like to experience disability as a child?
JUDY HEUMANN: So it’s a very interesting question. I experienced being a child. And given that I had polio when I was 18 months old, I really had nothing to compare it to. So my experience growing up was as a disabled child.
I think it’s different for other people who acquire their disabilities when they’re older, even when they’re kids, when they have a memory of what it was like to maybe travel in their communities, where if they had an invisible disability or visible disability, it didn’t really impact them.
But for me, I began really recognizing that I did things differently than other people when I was pretty young. You know, I couldn’t walk up and down the steps. I was carried upstairs to the bedroom. Then a ramp was built so that the wheelchair could be pushed into the house and I didn’t have to be carried in.
And then eventually my parents built a bedroom on the first floor so that my mother wouldn’t have to be carrying me up and down, because my father went to work at like 3:30 in the morning, and got home at 7:00, 7:30 at night. So we needed a bedroom and a bathroom on the first floor.
So those are things that, as I got older, I began to understand more why they were happening. And then of course in the neighborhood that I grew up in, none of the houses were accessible. It was like a middle class neighborhood in Brooklyn. And the houses were not large. But they all had stoops and two to three to four steps to be able to get into those houses.
And then they all had steps to go upstairs, where in those days, you live in a house to be three bedrooms and one bathroom, and that was not at all uncommon. In today’s standards, people are like, oh, my God, how could that be? But it just was.
So I think when things really started to happen in a way that made me feel really different was when it was time to go to school. Because before that, as I was saying, somebody would pull me up the stairs, my mother, my father, a neighbor, somebody.
But when my mother took me to school and I was denied the right to go to school because I was considered a quote, “fire hazard,” I didn’t really understand at that point what was happening. But I clearly knew something was happening because my friends that were my age were beginning to go to school and I was staying home.
And so I would say as I got older and was able to really begin to understand more clearly where the barriers existed that didn’t allow me to enter. So I’d say, my parents, friends, others were reasonable accommodation by lifting me up into someone’s house.
My mother, when she took me to school to register me, she was pulling my wheelchair up the steps. My parents weren’t even asking for anything. But that’s where I began slowly to understand the discrimination that disabled children like myself were facing.
And I think, really, very little thought given from the educators about the inequity that was happening or the long-term impact of having children not receiving appropriate education. So every kid in the neighborhood went to school for six hours or so a day.
Until I was in the fourth grade, the middle of the fourth grade, I didn’t go to school at all. I had a teacher who was coming one day a week for an hour and another day for an hour and a half. So in a week I received less education than my brothers or neighbors or family members did in one day.
And so I think that really, obviously not when I was six or seven or eight, did I start thinking about the long term implications. But as I was getting older, I was definitely beginning to start thinking about why was this happening and what needed to happen.
ELISA LEWIS: Absolutely. Thank you for sharing that. So your childhood experiences with discrimination, it sounds like, really had a huge impact on your view of the world. And because you were so young, it sounds like your parents were really involved with this. What was the role that your parents played in kind of shaping your commitment and involvement in disability rights?
JUDY HEUMANN: Well, my parents, like many parents then, and many parents today, even though we have many laws in place now, and in other countries where the right of children to go to school is still not happening as it should. So parents of their children need to play an important role in helping to ensure that kids get to school, that they’re getting the support they need to learn.
And when that wasn’t happening, my parents were looking at alternatives, what to do to be able to get me into school. And at that point in New York, I don’t know how many children with disabilities were not in school. And I wouldn’t have been counted as not being in school because I was getting two and a half hours a week of education.
But by 1975, when there was a national law on education for disabled children, the government said that there were at least one million children out of school. So my parents really were learning about what they needed to do to try to help me get into a program which I eventually did. I was on a waiting list. And my mother got a call from me to come down and be screened.
So it’s really important to understand if you’re a non-disabled child, your parent takes you to school at whatever the age of education is required. There is no screening process. There is no decision being made about, can this child come to this school? And that was definitely not the case of education for disabled kids.
So my mother took me to school for this week. There was no transportation provided. At that point, the parent had to stay in the school. So if the parent was working, they had to not work so that they could be there while their child was being assessed.
And theoretically, the school could say, no, this was not the right placement. But that’s not what happened. So I did get to start going to school when I was nine. But my parents continued to play an important role because my mother learned that at that point in time, now we’re talking about the ’50s, none of the high schools in New York City were accessible.
So my mother and other mothers were organizing to get the board of ed to make some of the high schools accessible, because otherwise what happened is you went back on home instruction.
And so I was learning by what my mother was doing, people she was talking to, friends of mine. Now that I was in school, my parents became friends with some of the other parents. And we would visit their homes. And they would visit our home. And so you’d hear people talking about what they were doing.
So I was really learning by watching what was happening. And then I was the first kid from my special ed classes to actually go to high school. The other kids stayed in the school until they were 21. And then they went into something called sheltered workshops, which were and are not good places. And many of them are being closed down in the US and Europe and other countries, Canada, looking at other ways of employing people.
But yeah, so my parents were my role models. And I think in many ways, myself and my peers were kind of ratcheting it up. We were ratcheting it up because we were benefiting from something called television, which now more and more people don’t necessarily watch television.
But in the ’50s television was just coming in. And so it was really a wonderful opportunity to look and see what was going on, like the civil rights movement, with the women’s movement in the ’60s with the anti-war movement.
And we were learning from other people about how they were discussing issues like discrimination, what was going on, cases like Brown versus Board of Education, which was a very significant case making school segregation illegal.
So all of that learning that my friends and I were doing really allowed us to start thinking about the changes that needed to be made. And I think you were going to show a clip from this movie called Crip Camp.
Now let me just say before you show it– so the film is called Crip Camp. It was an Academy Award-nominated film for best documentary in 2020, right? Or ’21? 2021, 2021. And you’ll see in this film, in the clip, it’s a camp for children who have disabilities and young adults.
And many of us went to the same elementary school. And a number of us stayed friends when we went on to high school. So I think you’ll see in this clip something of what I’ve started to talk about we can talk more about after.
ELISA LEWIS: Yeah, perfect. I will go ahead and play the clip now. Let me just share my screen. And then we have some questions to learn more about your experience at Camp Jened.
[VIDEO PLAYBACK]
– What? You want me to tell them what happens? Well, two people got crabs and they were spreading.
– We were all very hyper about it.
– I have to go shower some people. I’ll see you later.
– I wanted to be part of the world, but I didn’t see anyone like me in it. I hear about a summer camp for the handicapped run by hippies. Somebody said you probably will smoke dope with the counselors. And I’m like, sign me up.
– (SINGING) Freedom, freedom–
– Come to Camp Jened and find yourself.
– There I was. I was at Woodstock.
– You wouldn’t be picked to be on the team back home. But at Jened, you had to go up to bat.
– Even when we were that young, we helped empower each other. It was allowing us to recognize that the status quo is not what it needed to be.
– The world always wants us dead. We live with that reality.
– At the time, so many kids just like me were being sent to institutions. It was just a continual struggle.
– Most disabled people like myself are unable to use public transportation.
– We needed a civil rights law of our own.
– A rehabilitation program has been vetoed by the president because it was cost prohibitive.
– We decided we were going to have a demonstration.
– You get the call to action. To the barricades!
– A small army of the handicapped have occupied this building for the past 11 days.
– So many people from Camp Jened found their way into the building.
– The FBI cut off the phones. The deaf people went, “we know what to do.” That’s how we communicated to the people outside the building.
– The Black Panther Party would bring a hot meal.
– We were like this.
– We are the strongest political force in this country.
– We will no longer allow the government to oppress disabled individuals. And I would appreciate it if you would stop shaking your head in agreement when I don’t think you understand what we are talking about.
– What we saw at that camp was that our lives could be better.
– If you don’t demand what you believe in for yourself, you’re not going to get it.
– (SINGING) I sailed for pleasure–
– Would you like to see handicapped people depicted as people?
– Excuse me?
[LAUGHTER]
[END PLAYBACK]
ELISA LEWIS: So definitely recommend watching this. For those of you who have not, it’s a fantastic documentary. Hold on, I think something’s playing. YouTube always wants to go on to the next video. Sorry about that.
So I wanted to ask you, Judy, how did your time at Camp Jened, featured in Crip Camp, help you to develop the skills that are necessary or were necessary to becoming a leader in the disability rights movement?
JUDY HEUMANN: You know, I think, unfortunately, I can’t see the faces of those of you who are on this today. And I can’t ask you a question where I can see your hands. But I typically will ask how many of you went to camp. So whether or not I can see it, raise your hands. The other issue is– huh?
ELISA LEWIS: I was going to say, or feel free to use the chat window to let us know if you’ve been to camp. There is a virtual raise hand feature. And a lot of people are putting their hand up.
JUDY HEUMANN: And I presume that most of you really liked the camp, whether you have a disability or not. And I think one of the reasons why kids like camp, if it’s a well-run camp, it gets you away from your family, you’re learning new skills, like how to make more decisions for yourself, how to say yes and no, how to create new skill sets that you maybe wanted to try out before.
That’s what camp was for me and my friends. It was really little things for me, because I need assistance in getting dressed and undressed and going to the bathroom and doing– at that point, I wore braces, getting my braces on and off.
So when I was at home, I had two brothers. They were younger than me. And so for example, in the morning, when it was time to get dressed, my mother pretty much had decided what I was going to be wearing. And even if I didn’t want to be wearing it, she’s like, oh, can’t you just wear it, I’m really busy.
And that was nothing unusual. It wasn’t because of any emotional feelings she had towards me. It was she was raising three kids enough in similarity and age that she had to move on to the next thing.
But when I went to camp, the counselors did not pick out what you were going to wear. It’s like what do you want to wear? And so simple things like, what was my day going to be like? Was I going to need to change later on? All those things were really new experiences for me.
And what began to happen also as we were getting older, because I started going to camp when I was about nine. And remember that disabled kids then, and in some cases still, go to camp longer than non-disabled children, because we didn’t then, and have more now, but not enough opportunities. So I went to camp through high school.
And what was happening as I was getting older, when I was in high school and going to camp, and with my friends at school and talking on the phone, were basic questions like, oh, we’re in high school, what’s next? Are we going to go to college? What are we interested in doing? Do we see other people out there who have disabilities like ours? Are they in a variety of fields? How are we going to get to work? Transportation isn’t accessible. I don’t drive.
All these kinds of very basic questions, that then were resulting in our recognizing that things were not as they needed to be, and that we really were beginning to have to think about what barriers existed, and what do we think about it. And what are we going to do about it?
So it was not that the camps or programs had leadership programs. It was just that it was natural for us to be having these discussions, throwing out ideas, and then as we were getting older, looking at ways of implementing those ideas, small and large, either at camp or at home or in the community or in school.
And I think that, again, I want to reflect on what we were seeing on television and reading in the newspapers about all these social justice issues that were being addressed, and noticing that we were not a part of them as disabled people, noticing that there really wasn’t a movement of disabled people except for disabled veterans who you would see, and our really deciding that we needed to do more than depend on our parents, that our ideas were really more out of the box.
Our parents are trying to get us into school. We were looking at jobs. They were looking at jobs too. But we were looking at things like, well, we would like to be able to study such and such.
And then like in my case, when I wanted to be a teacher, my friends with disabilities said don’t tell the agency that’s going to support you going to college that you want to be a teacher, because we don’t know anybody in a wheelchair who’s become a teacher. So tell them you want to study whatever it is they want you to study.
And at that time, many disabled women were studying either social work or speech and speech therapy. So I said, I was going to major in speech therapy, which was fine, and that I would minor in education. And nobody ever asked me why I was minoring in education. So I took classes to be a teacher. I couldn’t do student teaching because I wasn’t majoring in it, and worked with friends on setting up an after school program.
And then did numbers of different things, but applied to become a teacher, took the required tests that I needed to take, all offered in inaccessible buildings. And I had to be carried up flights of steps for my oral and flights of steps for my written, and my medical exam, flights of steps. But the doctor failed me on my medical exam.
So that was really, for many of us, was I just going to take that? Or was there something that I was going to do about it, which is what I did. We sued. And luckily was able to find attorneys who could represent me. And the board of ed gave me my license. And I taught for three years.
ELISA LEWIS: So I do want to ask you a little bit more about your experience as a teacher. But first, I wanted to ask a follow-up question about your experience at Camp Jened. It seems that so many people who were at Camp Jened ended up being involved in the disability rights movement to one degree or another.
And I noticed that the decision to become an advocate seems to be a conscious choice that goes beyond being an individual with a disability. What was it like for you to make this decision? And what were some of the greatest challenges to being an early disability rights advocate?
JUDY HEUMANN: So I’d say a couple of things. One is I don’t ever feel like I made it choice. I guess the one place where I feel like I did make a choice, which was not on whether I would be an advocate, but when I was denied my teaching license, the choice was, was I going to try to get an attorney to represent me? Or was I going to just leave this as a story I could tell of discrimination that denied me the right to teach? And for whatever reason I decided not to do something.
That ultimately did not come to pass because an attorney contacted me and offered to represent me. And so I had no excuses after that not to move forward, and in fact felt that if I didn’t accept his offer, that that would be a real failing on my part, and a really bad example.
So I think it’s fair to say that many of us feel like we are examples for others and that where we fall short– I mean, I can speak for myself– one of the reasons I feel it’s so important to keep pushing is we look at each other. And we learn from each other.
And we, for me, I get my energy, in many ways, from others, and knowing that it’s collective, people who experience similar barriers, who are fighting for similar changes. And we can show that our collaboration is making a result. I think you can see that in the film.
And then in reality, with laws like– a number of laws like Section 504, the regulations finally getting signed, the passage of the Americans with Disabilities Act, and other laws and implementation of laws, where it really does take a group of people who are trying to make changes, both for ourselves individually, and more broadly.
So my mother, she was becoming an advocate, as I was saying earlier. Now, did she decide one day she was going to be an advocate? No. What she decided was she wanted to make sure I got an education like my brothers.
And as I got older and my friends got older and we were forming an organization in New York, many of our parents were very supportive of what we were trying to do. So it was really expanding our advocacy and changing who the leaders were as we got older. It was no longer appropriate for parents to be advocating for their adult children. It is in some cases. But it’s really making sure that the voices of disabled people as we get older are the predominant voices.
ELISA LEWIS: So you helped achieve a lot of firsts, both for yourself and the disability community. Among several, you mentioned one of them being becoming the first teacher in New York to use a wheelchair. You were also the first special advisor on disability rights for the State Department, and the first recipient of the Henry B. Betts award. Is there a kind of first that you are most proud of?
JUDY HEUMANN: Well, I think in many ways, becoming the first teacher. What I was proud of is that, as a community, we were able to come together and really make this story, which initially was about a person, me, who was denied a job.
But how, when you look at things that happened, there was an article in the New York Times. And that article got in there because of somebody that I knew who was a journalism major, and got a reporter to write an article.
And then I don’t know how the editorial got written. But so the article was on a Wednesday. The editorial was on a Thursday. I got a call from Roy Lucas, an attorney, on Thursday, and from The Today Show on Thursday to go on on Friday.
So those things were firsts for me, and firsts in the case of the teaching position. And I think it was the support that I was getting from many people who wanted to be teachers, wanted to be seen as having the qualifications to do what other people did, where there wasn’t any fanfare. There wasn’t fanfare about becoming a teacher.
When I was becoming a teacher, there was an insufficient number of teachers. They were begging people to come in, to take certain classes and then come in to teach. But if you had a disability, nope.
So I think there were all these different things and opportunities that, like when the newspapers were calling for interviews and television, things like that, radio, one thing that I did in conjunction with my friends was really not just to talk about me and the teaching issue. But rather to be able to talk about the overall experiences of discrimination that disabled people were facing in education, employment, housing, transportation, health care, et cetera.
So that we were casting a larger net to really help both the disability community, many of whom were not yet a part of the movement, to know that there was a movement being created, that it would be great if they also aligned with. But also to allow friends and family members and others who were experiencing discrimination of friends or family, and having people talk about it.
You know, people would stop me on the street, call out from their car. And very it was kind of interesting, because it was evoking thinking and a discussion that really hadn’t happened before. So all of that, I think, was very important.
And I have a book out also called Being Heumann and a younger version, a youth version, called Rolling Warrior. And I think those books are full of stories, as are many books that are written by disabled people. And I think this is not a market for disabled people. But telling one story– stories are difficult, in many ways, to tell, because they can be painful.
So I think, for me, it’s always been important to be as truthful in storytelling so that other people can, whether or not they express it, but can relate to it and think about it, because I think the more we can express our anger, frustration, willingness to fight for change, whether you’re a woman, whether you’re a Latino, or LGBTQ, or whatever, people need to understand what happens when people experience discrimination. And we need to be examples for others on what we need to be doing, leading by example.
ELISA LEWIS: As you mentioned, it’s really important for members of the disability community to be seen, and to your point, for their stories to be shared. In addition to the book that you just mentioned, you also have a podcast and a YouTube channel that aim to share the beauty of the disability community. Can you tell us a little bit more about your project The Heumann Perspective and what you cover in there?
JUDY HEUMANN: So I worked in the Obama administration, as you mentioned earlier. And I, like many others, believed that Hillary Clinton was going to be the next president. And so I was not looking for another job. I was a political appointee. So I knew that if Obama lost, I would need to get another job. But I was pretty sure that Hillary was going to win. So I hadn’t been thinking about a job.
So when she lost, I had to really start thinking about how I was going to recreate myself. And I’ve always been involved with social media, and thought it could be interesting to look at ways of helping to educate both the disability community and the non-disability community about disability-related issues.
So I met this really wonderful woman named Katherine Salinas, who had studied– her undergraduate was in international development, although they never studied anything about disability. But she also was pretty good in social media.
So we started the company Judith Heumann LLC. And we started planning to do this podcast. And so we’ve been doing the podcast since, oh, ’19, ’17. And I guess it turned into a podcast last year. We were doing Facebook Lives.
But we tell stories of people who are interesting, in my view, people who have all different types of disabilities. It’s mainly disabled people that I interview. It can be one person, two or three people that were interviewing at the same time about issues in mental health, transportation, parents, being a parent, disabled parents, LGBTQ issues, issues on religion.
Really, the topics are very broad. I’m looking for people who I believe will be interesting for the audience. The audience will learn something. And most importantly, they’re going to be learning about the diversity of issues and people who are part of the disability community.
And they’ll learn about how people have been both advancing their own lives, but also working collaboratively with other people. So we do the podcast. We have two podcasts a month. And then we take those podcasts and we edit them into YouTubes.
So you can go online. You can get it on Spotify. You can get it all the places where you normally would be getting this. And I would love to hear your thoughts about it.
ELISA LEWIS: Thank you. And we can certainly share the link out to the YouTube channel and the podcast in the chat as well. So I heard you speak in another interview about allyship, and how being an ally to the disability community is really similar to being an ally to any other minority group.
JUDY HEUMANN: Or majority group, like women.
ELISA LEWIS: Yes. This really resonated with me. And I’m wondering if you can share a little bit about how non-disabled individuals can work with disabilities to be respectful and helpful allies.
JUDY HEUMANN: I think there are many, many ways this can happen. I would say, on some level, the simplest way is to read more, to look more, to look at do you have friends who have disabilities? How long have they had their disabilities? Did you know them when they had their disability? After they acquired their disability? What were your views? How did things change?
In one case, you’ll hear people who acquire a disability talk about how friends that they had before would disappear. So are you one of the people who disappeared? Are you one of the people who stuck in there and were helping, in an appropriate way, the person that you knew who might have acquired a disability, temporarily or permanently?
Read books by disabled people. Be more critical in looking at how disability is presented or not presented. What kinds of stories are you reading? So for example, I would say, looking at the New York Times over the last three years, they’ve really upped their game and have, on a monthly basis and more, articles and op eds that are being written by disabled individuals on a gazillion issues, allowing you to learn from those individuals what their views are on a certain subject.
And because of the breadth of what is being written, really allow you to get a better understanding of what it is that we are trying to address on a regular basis. And you, as a non-disabled person, or a temporarily able-bodied person, can be looking at how do you fit into this.
I would say, looking at organizations in your communities, are you supporting them? Do you know about them? Are there some groups that are doing work that you think are particularly good? Do they need volunteers like on their boards to do various things? Are you financially contributing? How are you learning, I think, is so very important.
And if you have friends with disabilities, which everybody has, really getting to know that person a little more and learning from them about things that they’re doing and what role you could play.
The reason why I was mentioning earlier, the ability, we’re looking at minorities and majorities, so women are the majority population in the United States, and face all forms of discrimination and bias in many, many areas. Now, women of color may be experiencing more than women who are not of color. So what are women who are not of color doing to support women of color in jobs and housing and whatever it may be?
There’s so many opportunities to learn and support. I think in the area of disability, what we want is for people to really learn about what we’re not. We don’t want to be seen as amazing people, inspirational people, for doing things that the non-disabled person would typically do.
So getting up in the morning is, as a rule, not an inspirational thing for anybody. Now maybe once in a while, there may be somebody, for whatever reason, it is inspirational. But the reality is we want to be treated like everyone else.
And I think another very important issue is disability is so broad. And we think frequently of disabled people as only being those where you can see one’s disability. And what’s very important, I believe, is that people are learning more about who disabled people are.
So people with depression, anxiety, bipolar, diabetes, lupus, cancers, severe back injuries, deafness, hard of hearing, blindness, low vision, on and on and on, knowing broadly about the barriers that people are facing, and looking at where you as a non-disabled person may be involved through your work, you’re a hiring manager, you’re in human resources, you’re working on a team, where they may be someone who has a disability who doesn’t feel comfortable talking about it.
You may know that there are people with invisible disabilities who don’t want to declare because they’re afraid of bias, discrimination, limited opportunities. Like, be asking. Be talking. Be thinking. Be supportive. I think all of that’s what good allyship is about.
ELISA LEWIS: Thank you for that perspective and such good advice. In your eyes, what are some of the biggest challenges that disability advocates are facing right now? And do you have any advice for them?
JUDY HEUMANN: From my perspective, it’s important to have allies with others, and to be able to identify other people who are having similar experiences who you can be working with. It depends on your community. It depends on the type of disability.
So for those of us with physical disabilities, one issue right now is the shortage of people to provide personal assistance, and how the weakening of the system and the fact that there isn’t sufficient money being put into the system, is having an adverse effect on many people, who may consider themselves to have a disability or not.
Frequently, older people don’t consider themselves to have a disability. But if they’re needing things like shopping or driving or helping them read their mail, or writing checks, or whatever it may be, it’s very likely they do have a disability. But they don’t want to identify it.
I think recognizing that you’re not alone is very important. And there is something I forgot to say. When looking at causes of disability, I would say we need to be very concerned about the issue of the environment, because one of the adverse effects that’s happening as a result of pollution, global warming, is not only famine and migration, but it’s also causing disabilities like respiratory issues and others.
So I think on the one hand, it’s very important that we look at disability as a normal part of life. On the other hand, it’s also very important that we are looking at what we can be doing to help ensure that we are living in a healthy world. And a healthy world is one that we should all be really, truly invested in.
So for me, things like voting are very important, making sure that we fight back against states that are passing repressive laws. I’m very concerned about this Supreme Court and the recent overturning of Roe, not just because of the issue of disabled women who may want an abortion, need an abortion medically, or whatever it is. But it’s also because the issue of choice.
I fervently believe that women need the right to choose whether or not they’re going to use contraception, whether or not they’re going to bring a fetus to full development. Those are personal decisions that people need to make.
And the more the general community understands that these issues are of concern to disabled people like non-disabled people, the more we’ll understand how we’re like everybody else.
I mean obviously, I think another concern I have is around gun legislation. I think guns not only cause murders, but they cause all forms of disability. And as a society, we are not really prepared to help people get the kinds of long-term supports they need. So I think at the end of the day, you have to believe that you are making a difference. And that the more of us working together, the more difference we can make.
ELISA LEWIS: Absolutely. I think this concept of intersectionality between advocacy groups is really amazing. We did see this actually in the Crip Camp film, where multiple civil rights organizations are working together across racial, gender, socioeconomic lines.
A question had come in kind of asking if this is something that was sort of a one-time possibility, or if you think that this kind of working together, this intersectionality, is possible and could happen again.
JUDY HEUMANN: I think it is happening now. I think it’s happening more now than it did then. Certainly during the 504 demonstrations, there was a very conscious effort made by those of us that were organizing the demonstrations to reach out to as many groups as possible who we had been working with over the years that were from a very diverse community and enlisting their support.
People frequently will talk about the Black Panthers, who really enabled the demonstration to go on as long as it did because they brought food every day. Now, that came about because one of the organizers of the Black Panthers himself had multiple sclerosis.
And so it was this connection to the fact that people with disabilities came from many different communities. And people had been working– I mean Cesar Chavez had sent a letter to the National Organization of Women. Many other groups in the Bay Area that were supportive of rights and justice-based activities supported the demonstrations that we were involved in.
So I would say now there’s more going on than ever, in part because the BIPOC community of disabled people have, over the last 10 years or so, really been coming together in a more powerful way, organizing within their communities also to be a part of making sure that appropriate representation from diverse communities was happening, that their voices were at the leadership tables in the area of disability in other places.
So it’s not yet where it needs to be. But I would say definitely it is advancing and getting stronger.
ELISA LEWIS: We have a couple attendee questions coming in. We’ve gotten a lot of appreciation kind of in the chat and in the Q&A for your commentary on what disability is. One attendee would like to point out that they struggle with identifying or with what it means to identify with a disability.
They mentioned having chronic health conditions, things like anxiety, and that they feel like they don’t want to assume they can call themselves disabled when other individuals maybe have much more challenging or serious disabilities.
JUDY HEUMANN: So let me say this. What you’re experiencing and what you’re saying is not unusual. And identifying as having a disability is just that. You’re identifying and saying, I have a disability, it’s x, and it affects me this way. It may affect you in a minor way, sometimes in a more significant way.
But I really encourage you and other people not to kind of weigh, is my disability more significant than your disability? Because at the end of the day, what we– I think I can speak certainly on behalf of some people– the reason why it’s important to identify is to allow people to understand that when the CDC says there are 60 million disabled people, it doesn’t say there are 60 million disabled people, all of whom have this level of disability. It’s a very broad spread, as I’ve been saying.
So I think sometimes people have the concerns that you have. I think it’s how you represent it. So I really encourage you to talk about it. I have a really dear friend who had been in a very bad bicycle crash many years ago. And she– you could see it. Her back had been injured. She had a curvature. She had all these different things.
And yet she didn’t acknowledge her disability because she was like, well, my disability isn’t as significant as yours. But now I think she’s very much recognized that, for many reasons, it’s valuable for her to have acknowledged her disability. Also because it enables other people who may need a simple accommodation at work, to ask for it, otherwise to be afraid of not asking for it, and all different types of things.
But there’s no– when you look at the laws, whether or not you have a disability, which if you feel you are discriminated against, whether you would meet the test under the law is one thing.
So a disabled person is someone with a physical or mental condition which limits one or more major life activities. So you may have a disability that doesn’t limit one or more major life activities. But on the other hand, you may have a disability that limits one or more major life activities, which could enable you, if you felt you’d experienced discrimination, to file a complaint.
But I would like to say– I know I’m talking a little long-winded on this– I think it’s really important that if you are acknowledging that you have a disability, but you are afraid of saying it, that you just need to say it. And maybe you need to say it to people that you know, that you feel confident you can discuss it.
But it allows us to tangibly show the breadth of who we are and the impact that we can have as people come forward acknowledging their disabilities.
ELISA LEWIS: Thank you. It seems like a lot of people really appreciated the question and your thoughts around this. I think we could go on for hours. But we are just about at time and I think–
JUDY HEUMANN: If I could just say one thing– there’s a question here about a student being bullied. I would say you need to address it. I’m sure you are or you wouldn’t be writing this. I would look to one or more advocacy groups in the state that you’re living in.
Bullying is something that is not acceptable, should not be acceptable. And the leadership of the school must be held accountable. We cannot allow the leadership to kind of throw up their hands because they say your child has this or that. It needs to be an approach that allows your son to feel safe and allows others in the school to see that the leadership of the school will not tolerate bullying.
And the other person who wrote, “Massachusetts just passed a law giving learners with severe autism and intellectual disabilities greater access to public higher education, how do you see this influencing the lives of learners with and without disabilities?”
I think it’s amazing. And a very dear friend of mine, Julia Landau, has been working on this legislation for many years along with many other people. So I think it will have an impact, not just on those students who can start benefiting now from being able to move into higher education, but it also, I hope, will really allow people to look at the impact of students not receiving appropriate educations when they were younger because people felt they could not benefit.
So the whole issue of benefit is very important. And I think this very important piece of legislation will continue to have an effect both for students today and students coming through the system.
ELISA LEWIS: Thank you. And thank you for addressing those additional questions. Thank you, attendees, for asking such great questions. Judy, it was a pleasure to have you today. Thank you so much. We really appreciate you sharing your experiences with us, and really encouraging the future leaders of disability advocacy.
For those looking to learn more about Judy, again, definitely recommend her memoir, Being Heumann, an Unrepentant Memoir of a Disability Rights Activist. This is co-authored by Kristen Joyner. You can also connect with Judy on Twitter. And like we said earlier, check out her podcast, The Heumann Perspective.
Thank you again. Like I said, it was really a pleasure talking with you today. And we really appreciate all of your time.
JUDY HEUMANN: Thank you. It’s been great.
ELISA LEWIS: Take care, everyone.