Alice Wong is the founder of the Disability Visibility Project.

Alice Wong is the founder of the Disability Visibility Project.

“The coronavirus pandemic in the United States has disrupted and destabilized individual lives and institutions. For many disabled, sick, and immunocompromised people like myself, we have always lived with uncertainty and are skilled in adapting to hostile circumstances in a world that was never designed for us in the first place,” Alice Wong wrote for Vox back in April. “I am tethered to and embedded with a number of things that keep me alive: a power wheelchair, a non-invasive ventilator that is connected to my chair’s battery, a mask that goes over my nose attached to a tube, metal rods fused to my spine. How I sound, move, and look elicits pity and discomfort by many in public. This is the norm.”

Now, on the 30th anniversary of the Americans with Disabilities Act, Wong joins us to discuss living as a disabled person in an ablelist society, how ablelism compounds during a pandemic and the work she and many others are doing to bring the first-person stories of disabled individuals to light.

“Disability Visibility: First-Person Stories from the Twenty-First Century,” which Wong edited, features 37 pieces from activists, authors, lawyers, politicians, artists and everyday people as they grapple with the joys and challenges of the modern disability experience.

Produced by Julie Depenbrock

Guests

  • Alice Wong Editor, "Disability Visibility: First-Person Stories from the Twenty-First Century"

"Disability Visibility" Excerpt

Staying alive is a lot of work for a disabled person in an ableist society, and that work has been a big part of my forty-six years on this planet. I grew up seeing very few images that looked like me in books, film, or television. In that absence, how does one realize that something is even missing? Last year there was a photograph that went viral—a young girl in a wheelchair, transfixed by a beauty ad featuring a woman in a similar chair. The two ultimately met in person, and their story made me wonder about my own childhood—how my worldview would have changed if I had seen someone like me as a glamorous, confident adult. As I grew older, discovering a community of disabled people and learning our stories gave me a sense of what is possible.

Transcript

  • 12:32:02

    KOJO NNAMDIWelcome back. It's been 30 years since the American's With Disabilities Act was signed into law, bringing with it sweeping changes for millions, from ramps and service animals to closed captioning and equal pay. But as disability rights advocates will tell you, the fight for accessibility has always been as much about humanity and dignity as it is about public accommodations.

  • 12:32:23

    KOJO NNAMDIJoining us to discuss living in an ablest society during a pandemic and to talk about her work editing the anthology "Disability Visibility: First-Person Stories From the Twenty-First Century," is Alice Wong. Alice Wong, thank you so much for joining us.

  • 12:32:39

    ALICE WONGThank you for having me, Kojo.

  • 12:32:41

    NNAMDIAlice Wong, there are 37 pieces featured in this collection. What can you tell us about the voices you're working with to elevate with "Disability Visibility"?

  • 12:32:52

    WONGWell, these are all really different people. They're activists, writers, artists, everyday people. They all have something to say. And I think the one thing that's the thru-line of all of these essays and different pieces is that each person has something that's really personal, political and powerful.

  • 12:33:21

    WONGSo, I think it's really important that disabled people speak for themselves. They have been for a really long time, but I think there's also a bit of history of disabled people be spoken for or advocated for on their behalf. And, you know, it's really overdue that we talk anything about this body, that it is, that there are actual disabled people.

  • 12:33:58

    NNAMDIAlice Wong joins us by Skype. When did you begin collecting these essays, and when did you know that you had a book on your hands?

  • 12:34:06

    WONGWell, I feel like (unintelligible) a real fan of, you know, disability culture (sounds like). You know, part of it was (unintelligible) you know, just not seeing enough and wanting more my entire life. So, (unintelligible) informally, you know, I started with (unintelligible) of course (unintelligible) articles and websites and podcasts. So, you know, I have bookmarks on my web browser that I -- really complicated. There's folders of all sorts of articles and just interesting tidbits. And really, I'm just doing it for myself and also, you know, as a reference. You know, just in the future, somebody asks me, hey, you know, have you thought -- I'm looking for this. Do you know of any? (unintelligible) So, in a way, it's a little bit of my own personal library, right. And, yeah, I think I've had a lot of pieces that's definitely been on my mind. And these 30 pieces is just a very small sample, but it's something contemporary today about, you know, the 21st century experience of disability. So, this is just a sample, but it's really -- I think it says something about the times that we're living in.

  • 12:35:52

    NNAMDIWhat is the Disability Visibility project?

  • 12:35:58

    WONGWell, it's something I started about six years ago. It is funny that it's coming full circle now, with the 30th anniversary. (unintelligible) Because in 2014 I was just, you know, one person trying to think about, oh, you know, the 25th anniversary of the ADA was coming up the following year. And a lot of disability organizations were, you know, gearing up for this very large event anniversary. And I didn't know what I should do and, you know, I thought, well, we have to do something, but I wasn't sure what. And I'm a fan of StoryCorps, which is the national (unintelligible) project. And I went one of their events, they talked about how they traded partnerships, and how many people (unintelligible) to record their own histories. And the lightbulb went off, and I thought, oh, I could do a trading partnership. And (unintelligible) stories and editorials. You know, my friends did (unintelligible) through Facebook and Twitter to go to StoryCorps, because, you know, for so often disability history, you know, first of all, people don't even know it. It's not even taught in classes, and very often, it's probably documented by non-disabled historians. So, this was an opportunity to empower all of us to create our own history. So, fast-forward to 2020, you know, we now have 140 oral histories recorded with StoryCorps. May of the folks who participated elected to have it archived at the Library of Congress. So, we have a small, little collection of the zeitgeist of what it's like to be disabled in the United States. You know, that's for the future, that's for the present. That kind of really makes me happy.

  • 12:38:32

    NNAMDIIt's very exciting. We're talking with Alice Wong. She's a disability activist, media maker and editor of "Disability Visibility: First-Person Stories From the 21st Century." She joins us by way of Skype. Alice Wong, in the introduction to "Disability Visibility," you talk about what it takes to stay alive when you're a disabled person in an abler society. Tell us about your own experience. What are some of the things that have kept you going in a world that you write, quoting here, "it was never designed for you in the first place"?

  • 12:39:04

    WONGYeah, I feel very, oddly, alive right now. You know, I'm 46 years old and, you know, I can tell you, when I was born with my disability, you know, the doctors told my parents, like, you know, we don't know the future. She might not live past 30. So, I (unintelligible), you know, I couldn't see my future.

  • 12:39:33

    WONGSo this (unintelligible), you know, is not unusual for a lot of disabled people. I'm told time and time again that, you know, that they have (unintelligible) expectations. I think that's one of the most difficult things I experienced (unintelligible) disabled child (unintelligible) adult. It just, you know, I knew I was different, but there was really the attitudes by non-disabled people that really disturbed me and just angered me. And, you know, they didn't see me as me. And I think that's part of the whole idea of we live in a world that really wasn't, you know, built for you.

  • 12:40:24

    WONGAnd what I mean built, I'm talking about not just physical actions, but really about social and cultural belonging. And, you know, it has a lot to do with that. Just disability representation (unintelligible) culture, but also due to just, you know, being marginalized in social and public spaces. And that's something that, you know, I've definitely experienced most of my life. And it was really a (unintelligible) community, you know, by people where I really felt and seen and heard.

  • 12:41:12

    NNAMDIWhen did you discover a community, and what effect did that have?

  • 12:41:21

    WONGI think it was everything. I think so many people feel that way, you know, that they see someone or something (unintelligible). And it's kind of a lightbulb moment, that you're not alone and that you're part of something bigger. I didn't feel that way until maybe I was a young adult, and then I read (unintelligible). You know, I subscribed to magazines, Independent magazines. There was one called (unintelligible), and there was one called (unintelligible) magazine. And these were publications by disabled people, and they wrote about politics, about disability rights, about activism. They just really opened my eyes. There are people doing really, really bad-ass things. There were bad-ass disabled people all around me. But I'm, like, wow. How do I do this? This is a better route. This is a better way. There are so many ways to be. And I think that's (unintelligible) make sure that everybody feels seen and heard. I think we all deserve that.

  • 12:42:58

    NNAMDIHere now is Cordelia in Herndon, Virginia. Cordelia, you're on the air. Go ahead, please.

  • 12:43:06

    CORDELIAYes. Hi. Thank you for taking my call. I was officially diagnosed with multiple sclerosis in 1986. I was on crutches, and this is before the ADA, and I encountered my first problem in trying to get to work on crutches. There was an entire art class on the sidewalk. When I asked them to move, they refused, and I had to go into the street.

  • 12:43:30

    CORDELIAHere we are now, and there's still a long ways to go. They shovel snow into the handicapped parking spots. They shovel snow into the ramps where the pedestrians cross. I had to call the town for help last year, because I was stuck. I could not get over the ice wall. There's people -- there might as well not be any kind of a fine for handicap parking. They still do that. It's very hard.

  • 12:44:01

    CORDELIAAnd the cross signals, I was hit by a car last year trying to cross. Somebody couldn't wait, and they went. And they only give you 20 seconds to cross. And when you are disabled, you can't sprint. So, I appreciate that we have the ADA, but people are still so wrapped up in their own thing, that they just don't pay attention that we are out of the crawlspace now. You know, we're out there trying to get around with everybody else and we need more help. And thank you very much.

  • 12:44:35

    NNAMDIThank you very much for your call. Alice Wong, I suspect that's the kind of story you've heard a lot.

  • 12:44:41

    WONGYeah, thank you so much, Cordelia, for sharing your story. And I'm frustrated, too, here we are 30 years after the ADA, and there's still so many people and so many institutions that don't comply with the ADA or just claim that they didn't know about the ADA. We even have people in Congress that are, you know, trying to water it down and weaken the protections. And I would just say that, yes, we do need help, but also, it is our civil right to have access. And I don't think it's a favor or something that we should be grateful for, that this is -- we belong in public spaces. And I think based on Cordelia's experiences, you know, what that says to me that's really missing is to have disabled urban planners, to have disabled people as our elected officials. You know, we just need more representation everywhere so that experiences like Cordelia's aren't dismissed or aren't seen as, you know, one-off individual experiences. You know, that they should be taken seriously.

  • 12:46:09

    NNAMDIWe got a Tweet from Katy, who writes: Alice Wong's book gives voice to the diversity within the disability community. What is her hope for how this book will be used? Does she have a vision for incorporating this into K through 12, higher education curriculum? I think that would be awesome, says Katy. What do you think, Alice Wong?

  • 12:46:30

    WONGWell, that would be a good idea for a second edition. I think, you know, this kind of anthology is definitely, I think, for older teenagers and adults. There are some pretty serious topics discussed and with a lot of (unintelligible) about it. I did put contact notes so that people are aware. But I do think there's such a space for K through 12, if there's a just across the board, across every subject to have more disability representation, disabled stories and, yeah. Wouldn't that be great to have a (unintelligible) for, like, elementary school (unintelligible) a children's picture book? You know, just these are different forms that are accessible to everyone. But, yeah, that's a great idea.

  • 12:47:41

    WONGHere's Amanda in Rockville, Maryland. Amanda, you're on the air. Go ahead, please.

  • 12:47:46

    AMANDAHi. Good afternoon. Thank you for taking my call. I was the first person with a disability right after the Americans With Disabilities Act was passed to leave special education and be fully mainstreamed into my neighborhood high school. And I was in a general education setting with my nondisabled peers. And I went on to college, and I have two college degrees. And I'm currently working in the field of disability training and advocacy.

  • 12:48:16

    AMANDAAnd I'd just like to say that we've come a long way, but we still have a long way to go towards equal housing and equal employment, and especially with transportation. I believe that all people with disabilities are capable of being included in a general setting, if they're given an opportunity. And we need to be given more opportunities to show how capable we are and not self-contained and segregated. Because self-containment and segregation did not prepare me for the real world, and it's not the real world. Thank you.

  • 12:48:49

    NNAMDIAlice Wong.

  • 12:48:51

    WONGThank you so much for talking about that. Yes, I do think that so many of us are still segregated. You know, it's really sad that after decades and decades of the fight by disabled people to live. In the community that you see right now during this coronavirus pandemic, people who are trapped in (unintelligible) are dying and infected at alarming rates.

  • 12:49:27

    WONGAnd, you know, (unintelligible) prisons, nursing homes, assisted living centers, detention centers, psychiatric hospitals. And, you know, one thing that's, you know, so dangerous about segregation is that people are rendered invisible. If we don't know their stories, they're not able to tell us what's going on. And I think right now, you see the rush to restart the economy. You know, so many people, including brown, black, indigenous people, you know, we're all considered disposable by the society. You know, just, oh, these are just part of the losses. You know, (unintelligible) this is absolutely, you know, just disturbing -- you know, disturbing to me. And I think this is why we have to keep fighting to be visually in public and involved in our society.

  • 12:50:48

    NNAMDIYou wrote your own first personal essay for Vox back in April. Your opening sentence, quoting here, "it's a strange time to be alive as an Asian-American disabled person who uses a ventilator." A few weeks ago, we had lifelong disability rights leader Judy Heumann on the program to talk about the ADA and the Netflix documentary "Crip Camp," which chronicles the disability revolution leading up to the passage of the Americans With Disabilities Act, 30 years ago this week. I wanted to play a clip from that documentary, where Judy voices something that I think is particularly relevant to this conversation. Here it is.

  • 12:51:24

    JUDY HEUMANNYou know, on the one hand, I'm sitting here feeling like I should say everything is wonderful. And I don't feel that's at all what we talked about. And I'm very tired of being thankful for accessible toilets. (laugh) You know? I really am tired of feeling that way, when I basically feel that if I have to feel thankful about an accessible bathroom, when am I ever going to be equal in the community? (applause)

  • 12:52:02

    NNAMDIAlice Wong, I'm wondering what your response is to Judy's words here.

  • 12:52:06

    WONGWell, you know, Judy is, you know, one of the leaders that's just such a pioneer. And I think, you know, for me (unintelligible) of people from the other generations (unintelligible) equality is one thing, but I'm really interested in justice. I think, you know, I want justice for all of us. And I think, you know, overall, the ADA is not (unintelligible). You know, it's not going to change people's attitudes. It's not going to (unintelligible) make our cities and towns and states more visible. It takes a moral and political will to make change. And it takes a culture change, too.

  • 12:53:10

    WONGBut I really want us to think about justice as the end goal, and oftentimes this justice is intertwined, which everybody knows this. You know, I think this is really important, as we think about our wellbeing and our freedom. It's all tied into one another. So, we have to fight for everybody.

  • 12:53:38

    NNAMDIYou say that eugenics is not just a relic of World War II. In what ways do you see this playing out today, and during this pandemic, in particular?

  • 12:53:48

    WONGOh, boy. I'll give you the two-minute answer.

  • 12:53:54

    NNAMDIIf you can do it in one minute, it would be even better.

  • 12:53:59

    WONGYes, yes. Well, I think, in this pandemic, we've seen the (unintelligible) quality of life has been used to deprioritize certain people that are high risk. And for high risk, they're also talking about people with disabilities. And, you know, we had that ventilators, health care, you know, treatment for COVID really needs to go to those that are most deserving, that those who will survive, those who have the best chance to live. And so many of these metrics or criteria are based on (unintelligible). Yeah. I'll just leave it at that.

  • 12:54:53

    NNAMDIAnd I'm afraid that's all the time we have. Alice Wong is a disability activist, media maker and editor of "Disability Visibility: First-Person Stories From the 21st Century." Alice Wong, thank you so much for joining us.

  • 12:55:04

    WONGThank you so much, Kojo.

  • 12:55:05

    NNAMDIToday's segment with the chairman of the D.C. Police Union was produced by Richard Cunningham. Our conversation with Alice Wong was produced by Julie Depenbrock. Coming up tomorrow, an investigative story about the District's response to coronavirus cites missteps and a heavy toll on communities of color. Plus, some black-owned restaurants are getting more support since the Black Lives Matter movement gained traction, but will it last?

  • 12:55:26

    NNAMDIAnd finally, join me tonight at 7:30 for a virtual Kojo In Your Community event. My guests will explore how low-wage workers have been affected by the pandemic. Find more details and register now at WAMU.org/events. But hurry, registration ends at 5:00 p.m. Until then, thank you for listening, and stay safe. I'm Kojo Nnamdi.

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