Will this year's census result in a historic undercount?
Netflix released “Crip Camp: A Disability Revolution” in March, a film which won the audience award at the Sundance Film Festival and critical acclaim from reviewers.
A project of Barack and Michelle Obama’s Higher Ground Productions, the film follows those who spent their 1970s summers at Camp Jened, a place where inclusion was the rule. Many of those campers went on to become leaders in the disability rights movement, taking bold action to bring about legal changes that paved the way toward the Americans With Disabilities Act.
But the activists who put their lives and livelihoods on the line know the fight for inclusion is far from over. We talk to the makers and subjects of the film, and to a young local activist who is carrying the fight forward.
Produced by Lauren Markoe
KOJO NNAMDIYou're tuned in to The Kojo Nnamdi Show on WAMU 88.5, welcome. Crip Camp was what the kids who went to Camp Jened in the 1960s and 70s called their summer paradise. Set in the Catskill Mountains, Jened was not a fancy camp, but for many it was the first place where having a disability didn't make them an outcast. Many Jened campers went on to become leaders in the disability rights movement.
KOJO NNAMDIToday we're going to talk about the evolution of that movement, which is animated in a documentary called "Crip Camp: A Disability Revolution" that was produced by Barack and Michelle Obama's production company and released by Netflix in March. We're also going to hear from a younger leader in the disability rights movement. Someone who is taking the fight for inclusion to the next level right here in D.C. Joining me now to discuss this is Jim LeBrecht, Sound Designer and Co-director of "Crip Camp." Jim LeBrecht, thank you for joining us.
JIM LEBRECHTSo glad to be here. Thank you.
NNAMDIYou co-directed this documentary, "Crip Camp: A Disability Revolution," with Filmmaker Nicole Newnham. How did you get the idea for the film?
LEBRECHTI've been working in documentary film as a sound mixer for over 20 years. And I've had the pleasure of working with Nicole on three of her past films. And as she was wrapping up her last film, "Revolutionary Optimist," you know, we had lunch together. I was pitching her some ideas about films she might make around disability, because I've also been more and more politically active as I get older in my life.
LEBRECHTAnd I kind of at the end of our conversation after pitching these different ideas, I kind of went, you know, I've actually always wanted to see a documentary about my summer camp. And I think I said it sheepishly because, you know, as she told me, she thought everything thinks their camp is special. But when I started talking about this place, she kind of went, What? What? And, you know, I just believe there was a connection between the camp and the disability rights movement.
LEBRECHTAnd as it turns out, you know, it's obviously true.
NNAMDI"Crip Camp" begins with extensive footage of you as a teenager and the other Jened campers playing baseball, strumming guitars in their bunks and talking about what it's like to live with a disability. Where did you get that footage?
LEBRECHTWow. Well, it actually was pretty tough to track down, but there was an organization or a group of video collective called The People's Video Theater that had started in the very early 70s in New York City. And they just happened to bump into some people from Camp Jened at a gas station near the camp. And their whole thing was trying to take this new technology of portable video and bring it to, you know, marginalized communities.
LEBRECHTAnyway, I remembered that these folks had been at the camp. I remember that given I had a camera strapped to the back of my wheelchair and somebody pushed me around campus. I gave a tour. And I just only remembered that it was the group called "People" in it. Nicole wound up sleuthing for a couple of months finally found a reprint of an old video magazine, and was able to kind of make the connection to Howard Gutstadt and Ben Levine.
LEBRECHTAnd as it turned when we connected with Howard, he lived just across the bay in San Francisco from us in Oakland. And they were in the process of getting these 45 year old tapes transferred finally to video. And as it turns out it was just this incredible gold mine. You know, they had five and a half hours of this video. Ben Levine, who had been holding on to it had moved 17 times over the course of the years. And, you know, even though we didn't have a tape to play it, you know, he just didn't throw the stuff out. And here it is. You know, this incredible opportunity to take what they wanted to do and so many years later say, we'd like to -- you know, we'd love to use this footage in a documentary.
NNAMDIWhat an amazing story. "Crip Camp" is the name given by campers, not the actual name of the camp. Can you talk about that nickname?
LEBRECHTWell, you know, Camp Jened -- it was the name of the camp, but, you know, the use of the word "crip" is something that not everybody in the disabled community, you know, likes or accepts. But for me and a lot of other folks it's kind of a shorthand, but it also kind of is an identity. You know, we're taking back the word "cripple. " And when you are kind of hanging out with folks if they -- Corvid Etchel was in the film -- Corvid says to me years ago, Did you go to Crip Camp? As opposed to saying, did you go to a summer camp for people with handicaps, you know?
LEBRECHTAnd it's just like this shorthand that says, you know, you're politically aware and this is kind of who you are. And, you know, now it's kind of part of my lexicon, you know, when let's say I'm going to the movie theater. I kind of say, well, I hope they have some good crip spots out front. You know, as opposed to handicap parking.
NNAMDICan you describe your disability for us and what life was like for you growing up?
LEBRECHTSure. I was born with spina bifida, which has varying degrees of severity for folks. I was born with a whole in my back and so I can't feel from the waist down. So I've never been able to walk. But in fact, my parents never moved out of a split level house. So I climbed up and down stairs until I left for college, which really served me incredibly well in that I knew how to navigate with or without my wheelchair pretty well.
LEBRECHTGrowing up especially in the days before the ADA or even the HEW504 regulations, you know, I definitely felt at times like an outcast. But I did have some friends that were really -- you know, thank God I got a chance to get into trouble because I had friends, you know. So you know, I mean, maybe we forget some of the worst parts in our lives and choose to remember the good stuff, but it wasn't easy and part of it was just access and stigma and prejudice. You know, people seeing you in a wheelchair and thinking that you're incompetent. But fortunately as I've gotten older and times have changed things have gotten better, but there's still a long way to go when it comes to stigma and, you know, the barriers we still face.
NNAMDIJoining us now is Judith Heumann, an International Disability Rights Activist and the former Director for the Department of Disability Services for the District of Columbia. Judy Heumann, good to talk to you again.
JUDITH HEUMANNVery nice to talk to you, Kojo.
NNAMDIIn the film we see you as a very young woman at Camp Jened, and then later as an activist leading sit-ins and addressing congressional committees. Were the seeds of your activism planted at that camp?
HEUMANNActually I think the seeds of my activism were nurtured at the camp, but they began earlier than that. When I started going to school in Brooklyn, New York, I was in segregated classes. Meaning the classes were just for students who had disabilities. We were in a school with four floors and most of the students didn't have disabilities. We weren't learning from the same curricula as the non-disabled students and there were very low expectations for what would happen to those of us in these special ed classes.
NNAMDIJustice Shorter is an Advisor to Disability Advocates and the Co-organizer of a recent Disabled Black Lives Matter event. Justice Shorter, thank you for joining us.
JUSTICE SHORTERThank you so much for having me, Kojo. It's a pleasure to be on.
NNAMDIJustice Shorter, you are 30 years old, same as age as the Americans with Disabilities Act, but you say the fight from inclusion is far from won. What are you still fighting for?
SHORTERRight now at the moment, black disabled lives. And that is the entire reason why myself along with my co-organizer Carrie Gray decided to organize a group of fierce, committed and phenomenal black indigenous people of color along with many of our supporters on June 6 to join the protests for "Black Lives" and an end to police brutality. We know that around 30 to 50 percent of those killed by the police are believed to have some sort of disability, mental health consideration or access or functional need. So we wanted to come out to say that Black Disabled Lives Matter. And that is a thread that is a part of this wider conversation around Black Lives Matter.
NNAMDIJudy Heumann, let's listen to an archival clip from "Crip Camp" in which you are addressing a federal official sent to appease you and others demanding rights for the disabled.
HEUMANNEvery time you raise issues of separate, but equal the outrage of disabled individuals across this country is going to continue. It is going to be ignited. There will be more take overs of buildings until finally maybe you begin to understand our position. We will no longer allow the government to oppress disabled individuals. We want the law enforced. We want no more segregation. We will accept no more discussion of segregation, and I would appreciate it if you would stop shaking your head in agreement when I don't think you understand what we are talking about. (applause)
NNAMDIJudy, that last line, which prompts the applauses is one of the most quoted lines from the film. Why do you think it resonates with people so much?
SHORTERBecause disabled people have been oppressed, and I think the activities for the demonstrations in 1977 and "Crip Camp" and moving forward when we can come together and acknowledge this form of segregation and second class citizenship and we can express it, people are applauding because we're saying things that people have been feeling, but haven't expressed or haven't heard people express.
NNAMDIHere's Rachel in Virginia. Rachel, you're on the air. Go ahead, please.
RACHELThank you. Hello. I'm a commercial driver. I drive disabled people, and I loved the documentary. I love that it shows all of these people just as people with the same needs and lives as able-bodied people. Often I think people misjudge them, and think just because someone has a physical disability that their intellect is, you know -- I don't know, affected. And in my experience it's not. And I love these people and I love that they're being seen in a light that they deserve. Like that last lady said, not segregated, you know, not different. They're just normal people.
NNAMDIThank you so much for your call. We've got to take a short break. When we return we'll continue the conversation. I'm Kojo Nnamdi.
NNAMDIWelcome back. We're talking about the documentary "Crip Camp" documenting the disability rights movement with Jim LeBrecht, Sound Designer and Co-director of "Crip Camp." Judith Heumann is an International Disability Rights Activist and the former Director for the Department of Disability Services for the District of Columbia. And Justice Shorter is an Advisor to Disability Advocates and the Co-organizer of a recent Disabled Black Lives Matter event. Speaking of which, Justice Shorter, recently you and Activist Carrie Gray organized a Black Disabled Lives Matter event here in the District. What is the idea and why did you organize it?
SHORTERWell, we wanted to be out there. I gave Carrie a call on the Sunday before we went out. So kind of a week before and I said, listen, I know you are also paying attention to what's going on, but, of course, we wanted to figure out how we could both be out there. Carrie uses a prosthetic limb and I am blind. And so we just decided to go and to be each other's support. And while we were there we garnered a ton of attention and reporters even came up and said, what are you doing here, as if being disabled somehow completely separated us from our blackness and being involved in this issue.
SHORTERAnd we decided that there must be other people who are just like us, black people with disabilities, black indigenous people of color with disabilities who wanted to be out in this space. And so we decided to build what we wanted to be a part of and that was having people of color with disabilities being able to come out and be a part of the larger protests for black lives, which is what we did in six days.
SHORTERWe organized over 100 people to join us on the ground and about 40 people to help support us remotely, because as people with disabilities we show up in a number of ways, right? Some of us are out there physically in person on the streets. And others are providing assistance and support that is equally helpful, but just in a remote capacity.
NNAMDIWhere and when was it?
SHORTERThis was on June 6 and this took place at the White House. So we met around five blocks away from the White House and we all kind of came together. We discussed the different supports that would be made available for folks. So we had sign language interpreters. We had medics who were available. We had legal observers. We had scouts who would go out ahead of the crowd with brooms to push aside debris and glass or anything that could puncture of the wheels of someone's wheelchair.
SHORTERAnd we also discussed, you know, a couple of other things that people might just wanted to aware of in terms of if people were arrested and what should we do. And if people had any additional accommodation requests, right? Because that's what it means to have a group of folks who just have a really diverse range of needs. And so we wanted to make sure that folks felt as comfortable as we could in a space that was quite unpredictable. On the day that we were going out, it was on June 6, and there were thousands of people who were called to come out to the White House on that day for what was deemed Blackout Saturday.
SHORTERAnd so we wanted to be a part of that larger effort. And we wanted people to be as comfortable as they could be before we headed out. And once we had those conversations we all marched over to the White House and we were chanting and signing. And just a part of this larger event and it was absolutely amazing to have all of us there. And we were received as such once we arrived at the protest.
NNAMDIWell, guess what? We have an audio clip of that event of disabled and non-disabled people chanting on a street close to the White House. Let's listen to that clip for a minute.
NNAMDIJust a short of that chant, "Sign her name." Who does that refer to and what was happening while people were chanting it?
SHORTERYeah. So we connected with Black D.C. Deaf advocates and they were there with us in person. And we said, listen, we want to make this as accessible as we can. So how can we make sure that you all are included in this process?" So we came up with, "Sign her name" and "Sign his name." So if you go out to the protests you'll constantly hear folks saying, you know, "Say his name." "George Floyd." Or "Say her name." "Breonna Taylor." And of course, "Say her name," is a movement -- a larger effort that has been spearheaded by Professor Kimberle Crenshaw in recognition of all of the black women who are killed by police violence, but who are not equally recognized.
SHORTERAnd so we wanted to make a complement of that same theme of saying the names of people who have been killed. But we wanted to do so in a way that was accessible. So we decided to go with "Sign her name," "Sign his name." So we were signing the "B" and the "T" for Breonna Taylor. And we were signing the "G" and the "F" for George Floyd. And that was also accompanied by a series of videos that a young black deaf woman by the name of Megan Shanks helped us to organize.
SHORTERAnd that were launched on the very same day. So again, these are things that are happening behind the scenes. There's also wonderful advocacy that's not happening on the streets. But she helped us to organize a series of videos where black deaf folks are signing the names of other black people who have been killed by police violence. And those were being circulated along certain websites as well.
NNAMDIJim LeBrecht, I'd like you to respond to the first caller who said that having seen "Crip Camp," because she drives people with disabilities understands exactly how people with disabilities have the same emotions, the same feelings, the same experiences that others have. Was that one of the points for making this movie?
LEBRECHTWell, I think that, you know, the hope was that -- well, really Nicole and I our real hope was that we could reframe how people thought about disability and people with disabilities. Not just for the non-disabled, but also for people with disabilities. And I think that -- we're getting a sense that we're accomplishing that. And I would say that, you know, yeah, why wouldn't we have the same, you know, desires and needs and abilities as anyone else to, you know, to feel, but also, you know, to participate in, like Justice is talking about here is like look at what she and Carrie were able to do in six days. I mean, my God, you know, I could barely make a scrambled egg. My hats off to you so much.
NNAMDIHere now is Mary in Vienna, Virginia. Mary, you're on the air. Go ahead, please.
MARYSo what I wanted to bring -- you asked what it's like to have a disability. I have Multiple Sclerosis. And first of all I really appreciate it when folks that I know or don't know offer to assist with something. They ask and let me decide whether I need assistance, and then they help me out if I need help. That's fantastic. But there's also a very large percentage of the population who decides without discussing it with you that they need to do things for you.
MARYAnd it puts you in a really weird situation, because I've had strangers -- I've been walking down the street with bags of groceries and strangers have just taken them away from me. And decided they needed to carry them for me. All sorts of things, but that's one small example. All sorts of things like that and that just makes me nuts. I'm like, okay, can you just -- I appreciate the idea. Can you just ask first, rather than assuming."
NNAMDII hear you. Justice Shorter, I think you've had the experience of people asking if you needed help going to the bathroom.
SHORTERYeah. So people will often ask me for help with many things. But as a black blind woman, I'm always kind of very aware of my surroundings. But not everyone who offers you help is necessarily someone you want helping you with certain things, right? So you just really have to be mindful and constantly vigilant about the people who are around you and those folks who tried to offer assistance more often than not it is individuals who just simply care. And they just want to help in some way, which is lovely, but I agree with the caller. Simply ask before grabbing someone durable medical equipment like their cane or their wheelchair.
SHORTERThose devices are often very expense and they also are, you know, very coveted and appreciated by the people who use them on a day to day basis to maintain their independence and mobility. So just grabbing those devices or pieces of equipment without asking is definitely something that is frowned upon. So just ask first.
NNAMDICan you tell us about your disability, Justice, and how long have you been living with it?
SHORTERYeah. So I am blind. And my vision began to -- I began to lose my vision at a very early age of five or six or so. And that was attributed to glaucoma. But vision began to worsen when I was around 14 years old. And that's when I officially became legally blind and I began to lose more vision from that point on. So I've kind of had to learn how to advocate for myself at a very young age. And so when I was listening to "Crip Camp" it just flooded me with memories of myself in camp at 16 years old, you know, as a junior in high school.
SHORTERAnd I had a slightly different experience, though, because although I was also surrounded by a group of funny and fierce young people, I was the only person who had a visible disability that needed additional accommodations from the staff there. But I learned very early on the importance of interdependence, community and solidarity. And I learned why I needed to advocate for myself or people with disabilities.
NNAMDIGot to take a short break. I'm Kojo Nnamdi.
NNAMDIWelcome back to our conversation about "Crip Camp" documenting the disability rights movement. Patricia writes, "Thank you for covering this awesome documentary. My late husband Steven Diaz was not at the camp, but made a couple appearances, because of his participation in the 504 sit-ins at the federal building in San Francisco. One interesting fact about the disability protest was that it was made possible, because of the support from the Black Panther party who supplied food to the protestors. It was an awesome example of how disenfranchised groups can support each other for justice."
NNAMDIJudy Heumann, what was the relationship of the disability rights movement to the civil rights movement now that we've heard a mention of the Black Panther party?
HEUMANNWell, both at the National level during the 504 demonstrations and during the Americans with Disabilities Act efforts there was growing connection between the Civil Rights Community, the Leadership Conference on Civil Rights at the national level and in the 1970's, there was a member of the party named Brad Lomax, who himself had Multiple Sclerosis and the party became engaged with the activities with the 504 demonstrations, because of Brad. Because Brad was involved in setting up the demonstrations, he came with us to Washington D.C. with the Black Panthers that came in and supplied food for people who were in the building for the 27-day demonstration, making sure that people had three meals a day.
NNAMDIDo you remember, Judy, where you were when the Americans With Disabilities Act was signed in 1990? What has it meant to you and other people with disabilities in the years that followed?
HEUMANNWell, I'd been very active in moving the ADA forward, but the actual signing, I was in my office in Oakland, California at the World Institute on Disability. But I had been one of the people who testified at the joint hearings in 1988, I believe it was, and had been back and forth from Washington to California lobbying at that point for -- with members of Congress.
HEUMANNIt was a fantastic feeling when the ADA was finally signed, because it really was a bipartisan effort. But it also was an opportunity for disabled people to come together across the United States regardless of the type of disability we had, and be able to both express the types of discrimination that we were experiencing. And I think really puts forth the demand that we needed equal rights. And that the ADA was going to ensure that the public and private sector would no longer be able to discriminate based on disability, and that there were remedies if we felt that we had been discriminated against.
NNAMDIJim LeBrecht, let's talk a little bit more about "Crip Camp," the film. How did Michelle and Barack Obama get involved with this project? And what was your reaction when you heard that they were backing "Crip Camp?"
LEBRECHTWell, we have a wonderful executive producer, Howard Gertler who had been a producer on "How To Survive a Plague" which is a rather amazing documentary. And he had read about Higher Ground starting and had a chance to talk to one of the principals there, Priya Swaminathan. And at first she was saying that we're not taking pictures from anybody. We're really new. Our sales agent wound up getting our trailer to her.
LEBRECHTAnd she got back a hold of us and said, look, I don't know what you guys have done, but I've watched this thing twice. I can't stop thinking about it so we need to talk. So Priya came up to Berkeley where Nicole Newnham and I have our editing room. And we spent the day together going over all -- a lot of that footage and just talking. And when she left, about 15 minutes later she called us from the parking lot and said that, you know, we'd like to work with you. And it was just an incredible moment.
LEBRECHTAnd, you know, they really -- you know, she said, we're going to roll up our sleeves. We're going to work with you. And the president and Mrs. Obama looked at some of the cuts. We got some notes back through Priya, you know, about the film. But, you now, in the long run it was just -- I mean, you know, your heart kind of, you know, just starts pounding just knowing that, my gosh, that, you know, what an incredible endorsement for what we were trying to do. And just realizing that it was going to bring a great deal of visibility to our film and the message of our film.
NNAMDIIt's my understanding that President Obama himself showed up to something called "Virtual Crip Camp" just a few days ago. What happened?
LEBRECHT(laugh) Well, you know, part of any really good documentary especially is a strong impact campaign. And we hired two incredible women, Andrea LaVant and Stacey Park Milbern to lead this. And these are two women who are very much involved with disability justice. And said, here, you know, design a campaign, you know, for us. And one of the great things that developed was kind of a virtual camp for during the summer where we gather online for an hour-and-a-half every Sunday, 5:00 Eastern to talk about different topics.
LEBRECHTSo last Sunday, it was about, you know, organizing. And as a surprise to everybody, President Obama came onto the Zoom call right at the top. And it was really quite remarkable for a lot of people. Judy joined us right at the end. But the thing that was really quite remarkable, I mean, just hearing him talking and listening and, you know, being able to have conversation, was that when he began he did what, you know, all of us do in these situations, where we just describe ourselves and where we are.
LEBRECHTAnd so -- and, you know, so, you know, saying, well, you know, I've got gray hair, much grayer than it was a few years ago. And, you know, and it is kind of a way of saying that I am -- you now, I'm with you. I understand what this -- you know, I understand what it takes to be a true ally when, you know, you do something like that. And all I can say is that, you know, I was looking at Twitter as this was going on and people are going, he described himself. So it was remarkable.
NNAMDII'd also like to talk a little bit about Stacey Milbern, because Stacey Milbern was a very important leader in this movement, who just passed. Justice Shorter, care to talk about Stacey?
SHORTERWell, you know, I -- Stacey was obviously a phenomenal advocate who did a lot of work, as Jim mentioned, around disability justice, a phenomenal artist and activist. And there's actually a quote by Stacey that I use in a ton of my work now in terms of the mindset. I do a lot of work around disaster and emergency issues and looking at even policing as a crisis in America. But one of the things that she mentions is that "nobody is coming to save us so we continue to save ourselves and other around us."
SHORTERAnd I kind of keep that quote near and dear to my heart, because it really motivates me "to be the change we hope to see," but to also build the world that we want to be in. A lot of us learn very early, as individuals with disabilities, the necessity of self advocacy and how it's needed in order for us to survive.
SHORTERYou have parents right now of black children with disabilities, not only having the conversation that all parents are having of black children about, you know, policing and the real threats that black people have to contend with. But those who have children with disabilities are also having conversations about how their behaviors and how their equipment and how their characteristics, all of which may be associated with their disabilities, how those things can be misinterpreted as a potential threat when interacting with police officers.
SHORTERAnd so these conversations are happening right now, again, to equip young people with the tools that they need to advocate for themselves and to keep themselves safe and to come home at night. And I think those are the types of conversations that are happening all across the country, but it is also the very thing that's fueling the work that many black advocates and activists are doing across the country in alignment with Black Disabled Lives Matter.
NNAMDIHere now is Deborah in Bethesda, Maryland. Deborah, you're on the air. Go ahead, please.
DEBORAHHello. Thank you so much for producing the documentary. I'm eager to see it. My brother-in-law has spina bifida and he's in his fifties and became a special ed. teacher from his wheelchair and counselor. And is an amazing example of someone with a disability, who did not let it be a handicap.
DEBORAHMy question is, what would you recommend that we can do as citizens and as parents, perhaps of young children -- he shared some stories about having parents point out to their children things about him that were inappropriate and did not teach them how to say the right thing and interact appropriately with him. So what can we do to educate ourselves and to inform our children and become better citizens and better educated about how we should behave and what we should do?
NNAMDIFirst you, Jim LeBrecht and then you, Judy Heumann.
LEBRECHTI mean, I think maybe there's, you know, two things that come to mind immediately. One of them is that if you have a child with a disability, you know, be careful about over protecting that kid and that everybody has disappointments and failures in life. And that that's an important experience for any child to experience.
LEBRECHTAnd I think that, you know, parents -- I mean, I think that there's ways that kids can be curious or ask questions that are respectful. And there are other ways that, you know, they can treat you like you're a sideshow. And I think that, you know, your parents -- it's important for parents to kind of, you know, look at how a kid may be engaging with someone like myself, you know, on the street. And I'm fine letting them talk to me about my chair or who I am or anything.
HEUMANNThank you very much for your question. First of all, I think it's important that people recognize that disabled individuals are a part of the diversity community, and that we experience disability discrimination on a regular basis. And depending on the disability that one may have, the discrimination may be more significant.
HEUMANNI think, as we were hearing from Justice and the rates of murders of black disabled individuals, many with hidden disabilities, we must recognize the racial diversity, the ethnic diversity, the religious diversity. But I think we have to stop looking at disabled people in kind of a whitewashed way. We are wanting to live our lives like everyone else, but it's not just the physical barriers that exist. It's ablest views that people have been brought up with.
HEUMANNWe're not seen in media, we're not in children's books, we're not -- "Crimp Camp" is a fantastic film which is a documentary showing lives of some people in a period of time. But once that disappears, where are we seeing disabled people in advertising, in documentaries, on TV programs and others in a positive way, really learning about our stories?
HEUMANNSo I think that's really what's important. You need discussions in your families, in your communities that what are your views around disability? And I think quite frankly people are afraid of acquiring a disability. Disability is one of the only, except for aging, where people can acquire it. And the fear of not knowing how we live our lives, what we do when we experience discrimination I think really keeps people at a hands length.
NNAMDIHere now is Gary in Phoenix, Arizona. Gary, your turn.
GARYThank you. In a couple of days I'm going to celebrate the 47th anniversary of my paralysis. I fell out of a tree when I was 18 years old and injured my spinal cord. And in the seventies it was a very, very difficult time to function. You couldn't count, frankly, on finding a bathroom when you went out in public. Many social and other activities, you simply couldn't participate, because you couldn't get in. Employment was very difficult. There's a long list of things but it was just a challenge, because of these artificial external obstacles.
GARYAnd so I am in appreciation now of how far we have come and how much more possible it is to function as a wheelchair user. And my wheelchair itself is immensely more sophisticated and customized compared to what I started in. But through my involvement with the disability community I also know that the harder stuff is what's left to do. People are being institutionalized against their will. Very difficult to work -- you know, break into the workforce and access the healthcare. When I'm in the housing market, I have very, very, very little choice.
GARYAnd so what I see is that these things still derive from what Judy was just talking about, about the underlying core beliefs that our culture has about disability. And that does not lead to investing in independence and inclusion. With that said, people with disabilities have emerged to a substantial degree, because of the work what Judy and other leaders have accomplished over all these years. And my hope is that, because of this increasing visibility, these culture beliefs are going to start to come up to speed and, oh, these are real people, who are fully able to participate in society. And we should design our policy accordingly.
NNAMDIThank you very much. Talking about design, Judy, you often say that some of the best so-called accommodations for people with disabilities are actually just good design that also benefit the nondisabled. Could you explain, give us an example?
HEUMANNSure. And there's a word that many people are using called universal design. And it really has been relating to the physical environment, although I think conceptually it's something we can broaden. You know, but for example, elevators at the train stations here in D.C. When we go to take the elevators, you'll not just see someone with a disability going to use the elevator, but you can see many people with a broken leg or people with a baby carriage or shopping cart, whatever it may be, that makes it difficult for them to get up and down the stairs or the escalators.
HEUMANNI would call that universal design, something that originally came about, because of laws and disabled people suing and demanding that the trains be accessible. Now people expect it. As one of the other speakers mentioned earlier, bathrooms that are accessible, ramps, dressing rooms, schools that are accessible, universities that are accessible. Accessibility I'm talking also about sign language and captioning.
HEUMANNCaptioning is another great example, because captioning is something that was created for deaf people. But the reality is captioning benefits so many more people. If your first language isn't English, if you can't -- if you don't have an auditory issue, but you can't hear someone or they have an accent, captioning really is opening a world in many, many different ways. So universal design is thinking about what will benefit the entire society. And when we're looking at it benefitting the entire society, it will also benefit disabled people.
NNAMDIJim LeBrecht, let's talk about one of the more striking scenes in "Crip Camp," the capitol crawl. What was it and can you describe what the archival film from that historic day shows?
LEBRECHTIt shows a number of people approaching the U.S. capitol in a demonstration to draw attention trying to ensure that the ADA would be signed. A lot of the organizing was done by a national group called Adapt. And when you see this footage in the film, you see many people, who have gotten out of their wheelchair to climb, as best they can, up the stairs. You see people, who are climbing with their crutches next to them. And there's really probably the most emblematic, there's a young girl with cerebral palsy, who's climbing. And, you know, she's kind of going, you know, I don't care if it's going to take -- I'm paraphrasing -- I don't care if it's going to take all day. I'm going to get to the top.
LEBRECHTAnd, you know, every time I watch the film it's just chilling. And, you know, you get a little bit emotional looking at what people have done to really draw attention to our needs. And, you know, I got to say, people are putting their lives on the line back, you know, for years and right now. You know, going out to a demonstration in a wheelchair, you know, you have to -- you know, if things turn south very quickly you have to be concerned about whether you're going to be able to, in your wheelchair, just get out of the way or get to safety, but the issues are life and death.
NNAMDIIndeed, Justice Shorter, you were very concerned about protecting people at the Black Disabled Lives Matter event from the coronavirus. What precautions did participants take?
SHORTERWell, everyone had a face mask. We also had a number of people bring donations so we had everything from additional face masks to gloves. We also had a couple of other things that were more specified to the needs of the individuals there, right. So we had individuals bring donations that consisted of mini fans, because it was around 91 degrees outside that day. We had noise cancelling headphones for individuals, who may be overly stimulated by the shear sound. It was so loud out there at the time.
SHORTERWe also made sure we had megaphones to make sure that people could hear us. And then if they, you know, were separated from the group for any number of reasons, that they would be able to get back to us, because, listen, we came out there for one central message and that was to make it very clear that there are a number of ways that black people are criminalized while simply living in this country.
SHORTERWe have heard about jogging while black in relation to Ahmaud Arbery. We've heard about birding while black in relation to Chris Cooper in Central Park. And so we were there to say being disabled while black should never serve as justification for discrimination or the use of deadly force. And that is a thread that weaves very tightly through the current Black Lives Matter movement in this country.
NNAMDIHere is June in Gaithersburg, Maryland. June, you're on the air. Go ahead, please.
JUNEHi, as someone whose disability falls into the category of invisible or hidden, I've often wondered whether the -- I feel (unintelligible) there's a big difference between the ways in which we, whose disability (unintelligible) category experience challenges around people in an ablest society working (unintelligible) versus what seems to be almost the opposite kind of challenges that people with more noticeable disabilities experience challenges. Seems like they're opposite kinds of challenges and I'm wondering if that gets in the way of unity and solidarity in disability rights work.
NNAMDIJune, if it's not too personally intrusive, would you mention what your disability is?
JUNEWell, I have post-concussion syndrome which has been challenging after a number of concussions.
JUNE(unintelligible) diagnosed with ADHD depression anxiety...
NNAMDILet me ask Judy Heumann about that.
HEUMANNIf I understood your question correctly, June, around differences, I agree. You know, one of the points I was making earlier around the ability for us to get (unintelligible) regulation signed and the Americans with Disabilities Act passed and signed was the fact that we have not, as a community with such diverse disabilities, really known each other as well as we need to. And so we tend to socialize with people, who have disabilities like ourselves.
HEUMANNOne of the important parts of the movement is the fact that we are consciously looking at who is not participating within the movement. And that deals with race, but it also is dealing with disability. So it's dealing with people, who have psychosocial disabilities, intellectual disabilities, diabetes, other hidden disabilities. And it really does require for all of us to be able to learn from each other, to speak up about how we feel being excluded and not understood by the disability movement itself. So I think your point is a very important one and one that I believe the movement is slowly addressing.
NNAMDIWe only have a little more than a minute left, Justice Shorter. Did you see "Crip Camp?" What did you think of it?
SHORTERI did. I listened to "Crip Camp," because it also came with audio description for all of us blind folks. And, again, it just continued to emphasize the point that, you know, activism is something that a lot of us get started with very early on. It is something that many of us are still doing right now and there is no shortage of ways to get out there and to get involved and to make sure that you are a part of these larger movements that are taking place, or that you build the movement that you want to see happen, whether it be in your community or on your campus or in your city or the country at large. So I encourage people to show up in whatever ways is most accessible and most convenient for you.
NNAMDII know that, Judy Heumann, you have a book out this year. It's called "Being Heumann." I'm afraid I don't really have the time to ask you much about what it is. Finally, Jim LeBrecht, "Crip Camp" was shown at the Sundance Film Festival at the beginning of the year, but the pandemic prevented it from getting into theaters. In 30 second or less, how big a blow was this for the project?
LEBRECHTIt was a mixed blessing. We were meeting so many kind of people as Nicole and I went town to town with the film. But with people organizing and watching it online on Netflix, you know, we can have gatherings at which we don't have to worry about being able to fit all the wheelchairs into the movie theater. And so, you know, we're meeting people. It's worked out well.
NNAMDIThanks. Jim LeBrecht, Justice Shorter, Judith Heumann, thank you all for joining us. Today's show was produced by Lauren Markoe. Coming up tomorrow we'll be taking a little break from The Politics Hour. We and The Politics Hour, however, will return next week. Until then, have a good weekend. Enjoy the holiday, stay safe. I'm Kojo Nnamdi.
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