Podcast

Interview Date | May 19, 2020

JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit. 

What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.

The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.

As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate isabled voices and perspectives in the midst of the COVID-19 pandemic.

[peaceful music slowly fades into chill guitar music]

JUDY: Thank you, Chris and Jill. I really appreciate this opportunity. My name is Judy Heumann, and I’m older than both of you. I’m 72 two. And I always tell my age now because I’ve done a lot of things in my life, and I couldn’t be 26 having done what I’ve done. I think what’s kind of interesting about my life is I was born in 1947, and at that point in time, we looked at getting a job I think, like in Michigan with the auto industry, and you know, you’ve got a job. And it would be a job for your whole life. I didn’t really know what my job was gonna be, but I kind of thought when I got one, it would be for my whole life. Which is not what happened.

So, I’ve got a very, I think, interesting background. I’m a former school teacher. I grew up in Brooklyn, New York. I got my job after having to sue the Board of Education because they denied me my license ‘cause I couldn’t walk. That’s really when I started getting more active in working on strengthening, developing the disability rights movement. I’ve been involved in helping to stand up a number of disabled people’s organizations: disabled in Action in New York City, which still exists today. Then I left Brooklyn to go to graduate school in Berkeley, and I got involved in the beginning stages of the Berkeley Center for Independent Living. So, I was one of the founders of CIL and have been involved in the development of the U.S. and international Independent Living Movement. I was one of the founders, with Ed Roberts and Joan Leon, of the first international public policy institute called the World Institute on disability in Oakland, now it’s in in Berkeley, California.

And then after working in the DPO world and serving on a number of boards locally and nationally, I was offered a position with the Clinton administration. So, I worked, basically, for two terms in the Clinton administration as the Assistant Secretary for the Office of Special Education and Rehabilitative Services. When I left that job, because the Democrats lost and Bush became president, I then got a job working at the World Bank as their first Special Advisor for International disability Rights. I was there until 2007 and then became the Director of an agency in the District of Columbia called the Department on disability Services, which was a newly-created department that had two program areas under it: rehabilitation services and services for people with developmental disabilities. And then in 2010, I went to work in the Obama administration as a Special Advisor for International disability Rights until we lost the presidency in 2016.

And then I was kind of a little bit not sure what the heck was gonna happen. Because I was sure I had a job when Hillary was gonna win, but she didn’t. So, then the Ford Foundation, under Darren Walker when he became president, was really moving forward on a very strong social justice agenda, but it excluded disability and was really taken to task for that. So, as a result of that, I think he’s done some amazing work in really turning the foundation into one which is truly becoming a more inclusive foundation across the foundation. And I was offered a fellowship. And so, for that fellowship, I did research looking at the issue of why disability is not integrated into media, significantly behind and in front of the camera. And I had a convening with about 26 organizations and individuals, both working on disability and in cultural diversity in media, and then produced a paper called A Roadmap to Inclusion: Changing the Face of Disability in Media. And have, for the last couple years, with support from Ford money continued to be working on this project.

And then a couple years ago, I started working with a woman named Kristen Joiner on a book, which came out in February of 2020, called Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. The audio comes out today. It’s done by Ali Stroker.

CHRIS: OK. OK.

JILL: Nice.

CHRIS: Nice. Really nice. Oh, that’s great.

JILL: Yeah. I didn’t feel I had the energy to be able to read the book because of my breathing.

CHRIS: Sure, sure.

JUDY: She played me in Drunk History.

CHRIS: Yes, right. Of course. Of course. [laughs] That’s awesome.

JUDY: And then also, was working with the Crip Camp crowd on the film that came out in March of this year called Crip Camp. And so, what I tell young people is, just work hard and try to dream your dreams and take risks. Because I never thought of myself as someone who would go from New York, Brooklyn, where my whole family was, to Berkeley, California. Then I came to D.C. to work for a senator. Then I went back to Berkeley to become the deputy of CIL. And then I came back to work in the Clinton administration.

And I still live in D.C. today. I’m married. I have a great husband. He’s from Mexico. His name is Jorge Pineda. We have no children, but we have 14 nieces and nephews. He’s got a big family; I have a small one. So, that’s a little bit of who I am. And I’m on a lot of boards.

CHRIS: I really, I wanna pause on that part of the story in which your life became literally an open book [chuckles], and you introduce us, the public, to your inner thoughts and your life in the book. But then, of course, that gets completely animated in a way that well, I don’t know if it was unexpected, but it’s been amazing to watch the Crip Camp revolution happen through Netflix. And how has that been for you? You know, and we’ll get into COVID-19 and the timing of Crip Camp, your book, and COVID-19 and why that’s such an interesting matrix of events happening all at the same time. But maybe if we could just, if we could start by you telling us a little bit about how it’s been to get the public to look into your life like that. I mean, Trevor Noah, The New York Times, you know, all the things that you’ve been doing, how has that been?

JUDY: Well, I have to say, last week, there was a quote of mine with the word “stymie” in the Merriam-Webster Daily Word, and that, to me, was, it completely flummoxed me. Because I have no idea how that happened. And then Time magazine, I was the women on Time magazine for 1977. Those two things and Trevor Noah, I think, really have been events that happened that I really had nothing to do with. And so, I think what a lot of this really means is that there is a growing recognition that there is a disability rights movement.

And I think when we look at Crip Camp, I was at Sundance with Jimmy and Nicole, the directors of the film, and the audiences were very large the first night. There were about 1,200 people in an overflow room, and then the film was shown 12 times. But I left after Sunday. And I would say that the biggest comment that people made, ‘cause there was a Q&A interaction, was, “How come we didn’t know this story?” I know that people were genuinely asking the question. But for me, given that anybody in that room either is a filmmaker or involved in making documentaries or watches documentaries, for those who make documentaries, not to know about this story—I don’t mean the Camp Jened story, but that there was a disability rights movement and is a disability rights movement—I think really indicates that people weren’t looking. You know, the woman that I wrote Being Heumann with, her name is Kristen Joiner, and she lived in Berkeley for a period of time, good number of years. I think her own admission, she really knew nothing about the disability rights movement.

And so, I think one of the questions now, when we look at COVID-19 is, what will make people look at this issue differently, and will they? I think the one, not one, but one of the positive things that you’re doing and others are doing is really having opportunities to more forthrightly tell people’s stories. And I think it’s great that Ford is one of your funders, because it really is an indication that the Foundation understands the importance of supporting work like your work, and that it’s a part of the culture that needs to be supported, and that major foundations like Ford need to be seen. Because getting money from the Ford Foundation for DisArt obviously is something which is important. People in the philanthropic community know the Ford Foundation.

And I think one of the other important parts of what Ford has done, again under, Darren, is work on setting up this President’s Council. And the President’s Council is composed of, at this point, 15 major foundations. And those foundations, in joining the council, agree that they will be working on how to integrate disability into their work. And so, I think it’s a real multiplier effect.

JILL: Yeah. Just while we’re talking about the Ford Foundation, interestingly, this project came across their desk through our newsletter. They came back to us and said, “Wow, this looks like a really important project, to like you’re saying, to tell the stories. What’s your budget?” To us, that was validating. It fits right into what you’re talking about: they’re paying attention to the stories. They want to hear them. They want to get them out. And it seems, from our experience, they want to get them out in direct rather than subtle ways. They want to dive right into the issues.

JUDY: And I also think it’s an indication that they’re hiring staff who have knowledge about disability, some of their staff. But there’s definitely been training that’s been going on for their staff and the way that they’ve been working on accountability within the Foundation. I mean the Foundation doesn’t really, they don’t put out requests for proposals. They saw your work, as you said, and then reached out to you. So, I think that’s a real important statement both about your work and about their work.

CHRIS: We’re currently working on a project with Tom Olin and his photographs. We have an exhibition of his photographs called Access is a Civil Right. And it was really the first time that Tom’s photos were put into a gallery setting rather than simply for newspaper and newsprint. And that exhibition now is being expanded. We’re in conversations with the Birmingham Civil Rights Institute to bring that there and to explore intersectionality in particular with Blackness and disability. And looking at that, Ford is really excited about that project. And so, we’re working with a couple different artists, and we have a curatorial team that we’re working with. And if we do get the funding that we hope to get it, there’ll be opportunities, I think, to bring the Crip Camp narrative to that and your own narrative to that, and thinking in particular about the intersections between Black Panthers and us during that time. But also the ways in which the sort of heritage of civil rights is shared between cultures. And that in itself, we’re hoping, will elevate and demonstrate this idea of disabled community and disabled culture. That’s really what we’re hopeful about. Yeah.

JUDY: I think, it’ll be important as we, as a culture of disability evolves that we’re able to see it not as a monolith.

CHRIS: Yes.

JUDY: Because it is different—

CHRIS: Mmhmm, mmhmm.

JUDY: —depending on our communities. And I think the ability for people to look at some of these issues more deeply and being able to publicly display what people are creating is very important. I’d love to see this goes forward and do some more work with you on it.

CHRIS: OK. Well, we’ll keep you in the loop as all of that begins to progress. We’re hopeful that people in the Civil Rights community, in the African-American culture, will also be excited about it.

JUDY: And the Latino community and the Asian community, the Native community, blah, blah, blah.

CHRIS: Absolutely all. Yeah, people of color, yeah. Yeah, yeah. Exactly. Exactly.

JUDY: I think it’s great that your photos are gonna be captioned in Spanish and English.

CHRIS: Yeah.

JILL: Yeah.

CHRIS: Yeah, yeah.

[chill guitar music break]

JUDY: I wanted to talk a little bit about COVID and our, I don’t know if “expectation” is the right word or hope that people will learn from this about disability. And that disability is something that a) many of us don’t aspire to being non-disabled people. We’re happy with who we are. And that much of what we experience which adversely affects our lives individually and collectively as a community, is because of the lack of recognition of who we are as people. And now, I think laws like the Americans with disabilities Act and Section 504 and many other federal and state laws are making some very important changes in the built environment, and there are more opportunities for disabled people in education, higher education, and in employment. But on the other hand, I think we still have not seen the changes that many of us would believe should’ve been occurring now, where people are looking both at our movement and us as individuals in an equal way. You know, we do things, in some cases, differently than some of them do. But nonetheless, being respectful, learning about people, and learning about friendship and employment and how our aspirations are, by and large, very similar to others, that’s very slow

And I think on the one hand, I shouldn’t be surprised about that. Because when we look at like racism and anti-Semitism and homophobia on and on, it takes generations and generations to create those degrees of -isms. And so, just giving someone a book or putting someone on a TV screen or in an article or sitting next to you, whatever, won’t make the dramatic changes that we would like to believe. But as I said, I do believe that changes have happened.

I was thinking about this issue in the last couple days, ‘cause there was a radio program that was produced in New York with WNYC about polio. And I had polio. And there were epidemics of polio in the United States and around the world. There’s been a little bit of information out there. Sunday Morning had a little piece about polio a couple of weeks ago. It was a fine piece, but it really only spoke about the U.S. And I have the privilege of traveling a lot around the world, and I meet very few younger people who had polio in the U.S. We’re pretty much an older group, 40s and up. And even those within their 40s, I met a woman yesterday. She came from Vietnam. But when I go to Africa, when I go to Asia, there’s still a lot of polios. And they’re not teenagers anymore, but I’m still meeting people in their 20s and 30s.

I think about the epidemic and you think, well, you know, President Roosevelt was the president for four terms. Even though they hid a lot about his disability, you know, in the end, I think most people really knew about him because of the March of Dimes. I mean, he was the face of the March of Dimes. So, I am curious to see what is gonna come after the pandemic, when people are gonna be able to come out more, when eventually we have a vaccine, etc. Because when you think about the polio epidemic and when you think about the COVID pandemic, I think for those people who will have a disability as a result of the virus, I think part of the aversion is we acquired our disabilities in a time of fear, people being afraid of dying. And I think that’s ultimately it. And then for those of us who haven’t died, they fall then back into what they thought about disability before.

I was doing an interview earlier this morning, and one of the points that I was raising is, most people are not like you and myself, Chris. You had your disability from birth. I had mine at 18 months old. The majority of disabled people acquire their disabilities as they’re getting older. And those people grew up with what we could say are ableist views ‘cause that’s the society. And then one day, they become disabled, or they gradually acquire a disability, whatever it may be. They still have negative views or neutral views, not usually positive views of who we are. It’s not like, people say, “Oh my goodness. I would like to be like Judy and Chris. Get me a wheelchair.” Except for kids whose parents have wheelchairs, and then they wanna know when they’re getting theirs. I think this is something that the arts really could play an influential role in really digging more deeply into what are people’s views of those of us who have disabilities? I think helping people who acquire disability for whatever reason really look at what did they think of us before, and now that they’re us? And how can they contribute to really helping the broader societies more directly look at these issues and how it impacts the person who acquires a disability. What happens when their friends and others, they no longer be there for them? On and on.

But I think what you’re doing is really important and I hope can really, I was gonna say evoke, but I think even more than evoke, in a more pointed way, really stimulate and encourage a discussion that I think we don’t hear a lot about. I mean, the expression of disabled people is really important because I think our stories, both the joy and pain that we experience because we have disabilities and how we’re treated. But I really do think also speaking with other people who’ve got a spinal cord injury or whatever it may be, or depression or something that they acquired over the course of their life and what they’ve learned and how they can become more prominent teachers in a more timely way.

JILL: Yes, I think what you’re saying is really relevant to the interviews that we’ve had. I think you would agree, Chris, that as we’ve been having these interviews, we’ve interviewed probably 25 people, Chris and I are on a trajectory of growth and learning. So, each interviewee kind of comes with us on that. And what we have shifted a bit more, particularly with people who have acquired disability or maybe acknowledged their disability identity later in life, is how that happened. There’s the role of mentors, the role of role models, people talking very openly, like you were just saying, that their perception of disability prior to their disability, that they were ableist, and they realize that now. And they are doing important advocacy work. And I would say the people that we’ve talked to most recently are younger people in their 20s who are doing that work, who have acquired disability. So, I don’t wanna speak for Chris, but we’d agree. I guess I’m saying all this because we’d agree, and this is what we’re hearing in the conversations that we’re having with people. And part of our impetus to interview people who are both like yourself, well-established role models, to be able to speak to the people listening who are newly disabled or newly coming into their own disability. But also people who are doing their own little maybe Instagram feeds or own personal advocacy work. Like we’re saying each story’s important across that gamut. That’s what this is about, is really helping the next person.

[chill music break]

JUDY: I’m sure it’s gonna be a little bit controversial, but we talk about the disabled and the elderly. And my feeling is, so, now I’m in the category of elderly. I always find it interesting that elderly people, older people, the way things have been formatted, it’s, there’s a distinction. And by that, I mean regardless of your age, right, if you are needing assistance because you have a disability, you have a disability. Older people think, well, they don’t talk about their disability. They don’t want to acknowledge it. But let’s be real. It’s the majority of where we have our disabled population. It’s something that they’re kind of interesting changes that have gone on. One of the areas that I’ve done work on since the ‘70s is aging and disability. And I started doing that for a couple reasons.

When I was getting my Master’s in Berkeley in public health, my professor was on the board of an organization called the Over 60s Health Clinic. I was invited to be on the board, and it was a real—I mean, I was young at that point, right? It was 1977 or something. I was about 30—but what I really began to see then was the creation of programs for older people that younger disabled people have been trying to dismantle. So, you look at nursing homes. You look at adult day healthcare programs. You look at these various models where people with similar disabilities—of course, they don’t call them disabilities—are being brought together and not being supported in the community to either stay living in their own home or to be able to live in the community, in an apartment or whatever it may be and get the kind of supports they need. And I woke up one day and I’m like, oh, my God. We’ve been fighting against segregated classrooms, segregated transportation, segregated, segregated. And yet when you look at what’s going on in the community for older people, that’s what’s being set up! And we don’t talk to each other, right? Like AARP, until later in the 1990s, maybe in 2000-something they would never advertise so much a scooter, a cane, never. Because they never wanted people to see older people as being weak, frail, of all these words, terrible, terrible words.

I remember when I saw the first diaper being advertised on TV, I couldn’t believe it. And I wear diapers on airplanes because they’re not accessible. And so, I was talking to one of the distributors one day, and I said, “What’s going on with the diapers?” And they said, “Well, a lot of people have diabetes, and incontinence is one of the issues with diabetes and other things.” So, you could see that the market has been changing: scooters and canes and things like that. But the Gray Panthers—which is a group that I also was involved with, they were active in the Bay Area in California and came out of Philadelphia with Maggie Kuhn—they were a group that really owned and acknowledged disability as a part of who they were. And I think that was very important. But I think as a movement ourselves, we need to continue to really be reaching out to these various communities and really having more serious discussions about who they are.

I mean, for me, I wanna get people in their 30s and 40s really being knowledgeable and supporting what’s going on around city planning in their towns, in their cities, in the state. You know, people need to be looking at how housing is linked to where you live or don’t live. Looking at money that needs to be provided so that you can modify your home; you can stay in your home. And looking what personal assistance service is or isn’t. And getting people not to be thinking about it for my mother or father because I can’t do it as a child. But really looking at it as something that is fundamental, that people who need personal assistance services should be able to get it, not just to be able to function in their house, but to be able to get into the community, to work, to live their lives, to go shopping, go to the movies, whatever, things that right now no one is doing. But, yeah.

CHRIS: I wanted to complicate things just a little bit, if I could. You know, DisArt and disabled activists really all over the world, especially in Europe, though, have used the concept of a disabled culture as a leveraging point. And of course, that’s something that you talk about in your book and sort of coming to a realization of that culture. And yet, the cultural membership of a disabled culture is always something that people bring up: so, who’s in the culture, who’s not in the culture. I mean, there are nuanced ways of thinking about that, and we would love to hear. Because here we have like this question of aging is really important. So, you have people who are newly disabled who are sort of realizing that the disabled political community exists. But there are some who know that it exists and have decided not to be part of that culture. How do you think about disability culture today, especially during the COVID situation?

JUDY: I think this is a complicated issue. The reality in whatever country it is, we’ve been, in finding each other, we’ve been identifying common threads that we’ve been defining as a culture of disability. And it’s in the very, very, it’s nascent where we are right now. So, you know, you’ve got Asian culture, Jewish culture, Black culture. But even there, there are all these subdivisions. Latino culture on and on. You know, it depends on where your family is from, what you grew up with, what your traditions were in your families. I think for many people who have disabilities, we didn’t grow up with a culture of disability in our family, let alone in our communities. I think we need to look at ourselves as, as I said, creating. And the diversity of our community is broader than the diversity of any other communities, really. We’re all ages, we’re all types of disabilities, we’re all races, all languages, all religions, all sexual orientations. We’re everywhere! And yet, when I grew up, I was the only disabled person in my family. I don’t know. Did you have other disabled people in your family?

CHRIS: I had a brother. Yeah. I had a brother.

JUDY: The same disability.

CHRIS: Yeah. Yeah. And, Jill, you had mental illness in your family as well?

JILL: Yeah. It’s part of our family. It’s part of conversations that we have in our family.

JUDY: But in many ways, I would venture that it was a different conversation in Chris’s family with he and his brother than in a family where people have psychosocial disability. But nonetheless, I think the issue is the real need to be able to talk about striving for a culture. What is culture? Why is it important? And how do we bring the voices of people both within their own communities, and then more broadly? And I think that’s very important.

CHRIS: I think some of the things that we’re continually thinking about and talking about with other people then is, you know, yes, we’re striving for that culture. The culture is already here. In some ways we’re discovering it, right? Who gets to define it? And obviously, it’s us. But, yeah, the participation question is really interesting.

JUDY: I think it’s us and history.

CHRIS: Mmhmm, mmhmm. Yeah.

JUDY: I mean, I think as we move forward more looking at the inclusion of disability in media, if we can look at, and if we can be having more discussions across our communities and really begin, I think, to have some more definition of what is culture, what makes up culture, and what do we have, and how do we share it, I think there’s some very serious issues that need to be continually discussed. And I know there are people that are working on that. Culture is something, for me at least, it’s been created over centuries, right? And not everybody wants to be identified within the culture. And I think in disability, we should not assume that 56 million people wanna be identified as having a disability.

[chill music break]

You know, one of the creations that arts and culture can have is, and why I think the work that you’re all doing is so very important is, because it allows people to see and listen and discuss how people do or don’t identify with what’s being presented. Because not everybody is gonna agree, nor should they. And I think healthy discussion is very important. And the richness of culture is very important. And how different cultures treat people who have different types of disabilities. There are just so many areas discuss. So, I think Disability Studies is very important. I also very much believe that Disability Studies should not be an island unto itself. That sisability needs to be integrated into Gender Studies, into Black Studies, Latino Studies, Asian Studies on and on. And that if we’re just continuing to keep Disability Studies as something that’s kind of off on the side, then I think our ability to really create and expand what we’re calling culture, Disability culture, is not gonna mature as quickly as it could.

But I think all of us should feel proud about the fact that, in a little way, each one of us has really, I think, helped bring to light and to surface these kinds of discussions. And when programs like this don’t just speak to ourselves, but get out to other people who will be learning from what we’re saying, I think that’s really the way this discussion kind of can seep more into other discussions.

That’s what art is all about, right? Art is the expression of so many different people expressing who they are. And I think programs like this and what I do with The Heumann Perspective and others, we’re still very small, but I think people are interested in what we’re saying. Some people are interested in what we’re saying. And then they can bring that forward to their dinner table, to their office, to their interview, to their religious community or dancing group or whatever it may be.

JILL: As I think about what you’re saying about community and how we each experience it differently and have different entry points to our own understanding of disability culture, one of the projects that we worked on with a couple artists in Grand Rapids in this past fall was called Critical Infrastructure. These artists, with DisArt’s collaboration, created what they call an accessible amphitheater. So, it’s this physical structure that had a stage, ramp. Everything was successful, different levels and layers of seating and opportunity for people who were using wheelchairs to people who had sensory concerns could kind of find their own place within this structure. And then within that structure, it had a stage that allowed for different programing to take place. And what we liked about that is that, going back to your statement about not only speaking to the same people always, when you create spaces that feel different and the people who join those spaces may look different or experience life different, we believe as an organization that that’s where community is created. And then relationships are formed and conversations happen. And then more people are at the table and on and on. So, for us, we like the stories, but we also like the systemic change through physical space and gathering.

JUDY: Yeah. Right. You know, you change the physical environment, it allows more people to come in, and it also allows people to learn about the role of the physical environment that’s accessible or not accessible. So, I think all of those things are very important. And then I think also, we need to move beyond the physical environment. Because the physical environment is very important for everybody, but the physical environment, are people accepted who put headphones on when they’re in different environments? And how do we allow communities where that’s happening for people to understand there may be lots of different reasons why that person has a headset on? But it shouldn’t be that we automatically say headset bad. So, I think one important part of what’s been going on is, as our movement expands so that, you know, for example, 20 years ago, you didn’t really have an active community of disabled people with autism.

I mean, even now, there’s discussions about the term “self-advocates.” I personally feel like “self-advocates” labels people with certain types of disabilities. You single them out because you know who you’re talking about. We’re not talking about Chris or myself as self-advocates. So, I think that’s a discussion which is going on. Making sure that for me, people who have different types of disabilities aren’t singled out because they have a different type of a disability. They may express things in a different way as individual people or as a community, and all of that’s very important. And I’m respectful for that. But we shouldn’t be labeling people ourselves, or we need to revisit things. Because I think the term “self-advocate” really started coming about in the ‘70s when the voices of disabled people with intellectual and developmental disabilities were really coming forward. So, really, I think it was the professionals that we’re giving the label “self-advocates” to distinguish them from the professionals. But that discussion is now going on.

And what’s important about these kinds of discussions is that they’re happening. And I think we also need to look at where are other discussions of culture outside happening? And are we a part of those discussions? And again, I know it’s happening in some places, but I think really, the issue is we are creating culture and disability. And we also need, I think, to be learning it in the broader context of cultural development from other groups who have done this so that we’re not making a cookie cutter out of it. But we can be learning from other people.

CHRIS: And that’s certainly part of our narrative as a community. You animate this so beautifully in your book, but the whole idea of disabled civil rights activists learning and fighting alongside with the Black Civil Rights Movement and the Women’s Movement, that narrative is in our history. But I sometimes worry that we’ll forget that our culture, too, we are a welcoming, interdependent, accommodating community, but we are still fighting. Like we’re still fighting. And I think that that’s—

JUDY: When you say “fighting,” what do you mean?

CHRIS: Well, we’re still…disabled people are doing the actual work as well. I mean, I just don’t wanna get eclipsed by other elements of the historical story. Because I think, if I can be so bold, that part of what made you emotional or what makes me emotional too when I think about the fact that people aren’t grabbing onto this idea of culture, part of what we’re feeling there is, again, like that that initial value of the disabled person, that should be ground zero. That we’re still not getting that, right? And that continues to be something that we are all fighting for. And DisArt does that with art, like you’ve been saying. I mean, we try to create these conversations in communities. And as Jill will attest, most of the time people come and they are meeting a culture that they didn’t expect to meet. They’re meeting artists and people and seeing things that they have not seen before. And hopefully they walk away with, right away, with a new understanding of disability because of that expression. But there are times in our work where we have to make some pretty hard decisions about what to push forward and what not to push forward, because that’s a heavy weight, you know. If we say that art, disability art, is a representation of this culture, it gives it a lot of power, a lot of power. And so, we have to constantly weigh what’s gonna bring people into the conversation in a way that doesn’t offend them or doesn’t surprise them too much or doesn’t feed off stereotypes. And so, it’s complicated work. It’s complicated work, but it’s really important to us. Yeah.

JUDY: Well, thank you for doing this. I want people to listen to your programs and see your art and do more than listen. I want them to look at how it impacts their lives and how they can integrate it into their storytelling, whether they have a disability or not. You know, I’m an extrovert, so I talk about storytelling verbally. But whether it’s written or painted or drawn or with words or whatever, I think, I mean, what’s important, you know, you’ve got more than 120 submissions at this point. And I think that’s really telling that people are doing this work, or they, for the first time are sharing something with you. But there is a real growing community that’s coming out of this. And as I said, we need to learn more about ourselves. We need to learn more about other people within our community. We need to learn more about what is culture. How do we define it? And how are we contributing to it? And what our mission is 10, 20 years down the road. And I think also, one of the important things is being able to maintain the documentation of the work that you’re doing. Where will it go in the future? Who will hold it and will make sure that what you’re creating does survive? [chill music plays through the next few sentences]

CHRIS: Thank you for spending time with us, Judy. You’re one of my heroes. It’s great to be with you. It’s really wonderful to have some time, and we’re just so grateful.

JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.

Music: “I got 99 broadswords but this one isn’t one (store’s theme)” by Komiku. (Source: FreeMusicArchive.org. Licensed under a CC0 1.0 Universal License.)