Disability Visibility: First-Person Stories from the 21st Century

Rebecca talks with editor Alice Wong and contributors Rebecca Cokley and Patrick Cokley about “Disability Visibility: First Person Stories from the 21st Century,” an anthology of contemporary essays by disabled people released in June. Subscribe to Off-Kilter on iTunes.

“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 46 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?“

Those are the opening words to the introduction of Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong, a dear friend and a longtime friend of the show. The book, which is an anthology of contemporary essays by disabled people, was released late last month, just in time for the 30th anniversary of the Americans with Disabilities Act, which we’ll mark on July 27th.

So to celebrate Alice’s book release, and bring a much-needed disability lens to the issues of the day, Rebecca sat down with Alice Wong, plus two extra special guest stars for this week’s pod: Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress and Patrick Cokley, administrator of the Lead On Update, both contributors to the anthology.

This week’s guests:

  • Alice Wong, Editor of Disability Visibility: First-Person Stories from the Twenty-First Century (@SFdirewolf @DisVisibility)
  • Rebecca Cokley, director, Disability Justice Initiative, Center for American Progress (@RebeccaCokley)
  • Patrick Cokley, administrator of the Lead On Update (@angry_negro)


REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas.

“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 46 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?”

Those are the opening words to the introduction of Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong, a dear friend and a longtime friend of the show. The book, which is an anthology of contemporary essays and contributions by disabled people, was released late last month just in time for the 30th anniversary of the Americans with Disabilities Act, which we’ll mark later this month.

So, to celebrate Alice’s book release and bring a much needed disability lens to the issues of the day, I’m thrilled to be joined by Alice Wong, plus two extra special guest stars for this week’s podcast, Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress, and Patrick Cokley, administrator of the Lead On Update and a contributor to the anthology.

Alice, and Cokes, and Patrick, thank you so much for taking the time to come on and to celebrate this book release.

ALICE WONG: Thank you. I’m so thrilled to be here!

PATRICK COKLEY: Thank you for having us.

REBECCA COKLEY: Always a fun time to be back on Off-Kilter.

VALLAS: [chuckles] Oh good. There we go. 100 percent Cokley representation.

Alice, I’m going to start with you, before bringing in Cokes and Patrick, to really kind of situate the book here. Tell a little bit of a story behind Disability Visibility. Why did you decide to edit this book? You tell a story in the introduction, which I was quoting from in the opening, about a picture of a girl in a wheelchair that went viral last year, and that’s really just kind of the beginning of the story.

WONG: Yeah, and I think I’ve wanted to create something that I haven’t seen yet. And I feel like this is part of the way all of us are trying to create the future that we want. So, I think a lot of my upbringing, I was just so used to not seeing myself, and it really was until later I realized, oh, gosh! This is really problematic, and most of the representation is not that great to begin with. And as we all know even today, there’s still a lot of feature films and television that feature actually disabled characters played by non-disabled actors. So, the challenges are still there. And I think books, and especially essays, first-person stories, really have a way of capturing the lived experience. And again, this is we’re missing lived experience in the broader culture in our society. And that’s what I really wanted to put forward and offer in this anthology. And the thinking behind it was really about 21st century stories. I really wanted to present a snapshot of the last 19 years. I mean, this is just the beginning of our century, and we’re one-fifth of the way through. And there has been some fantastic work by disabled people, some stories and really important ideas and issues. And this is my way of curating 37 pieces that are all personal, they’re powerful, and they’re very political. And those are all the three things that I tend to gravitate towards.

And I’m basically a fan, you know. I’ve always been a fan and a real hype person for like people that I’m just, people I just feel more people should know about. And I think that’s what drives a lot of the work that I do with the Disability Visibility Project, which started six years ago, which is pretty wild. And it kind of graduated and still, following to other media and platforms with the Disability Visibility Podcast, which started in 2017. So, this was kind of just the natural progression to add. In 2018, I self-published a small anthology called Resistance and Hope. And that was really my first experience as an editor of collected work. And these are all 17 stories: 16 essays by 17 disabled people. And it was all a meditation on the relationship between resistance and hope. And that anthology came out of a theory and fear and anxiety after I election day 2016 because like, what do I do? How do I respond? What can I do to bring forward our culture, our community and our points of view on this? Especially since resistance became this word that’s used over and over again, and resistance didn’t start in 2016. Queer people, disabled, Black and brown, Indigenous people have always been resisting. So, that was really my kind of response to the time.

And fast forward to today, this anthology is a little bit different in terms of the scope, but it has a very similar intent in terms of this is what disability culture looks like. And it’s just the tip of the iceberg. There’s just so much out there, but it’s really, hopefully an invitation for people to learn and to want to learn more and to want to expect more. Did I answer your question?!

VALLAS: Well, and there’s a lot there because you’re telling a lot of the kind of story of what got you to the place of editing this book. A big part of that was the Disability Visibility Project, which you mentioned. I mean, it’s wild that it’s been six years. You launched it in partnership with NPR’s StoryCorps back in 2014. And then that flowed into your work on Crip the Vote, #CripTheVote, which we should talk about as well. But before I bring in Patrick and Rebecca, who I would love to comment on that as well, particularly given that we are in an election year, and it’s creating a lot of convening space that also is kind of parallel and related to a lot of the work that this book does, one of the words, one of the themes that really flows throughout your introduction is the word “community.” You talk about community being political, community being magic, community being power, community being resistance. And community, in so many ways to me, is sort of the through line of a lot of the work that you have done as you’ve built platforms, as you’ve created anthologies, as you’ve created hashtags, as you’ve created spaces for disabled voices and disabled storytelling: all of that has created community, which a lot of which has actually been online and really significant for people who lacked connection to other people like them. Talk a little bit about that story behind #CripTheVote and the role of community through all of this work leading up to this anthology.

WONG: Yeah. Thank you for that. You know, just personally for myself, I think I really found myself through finding community. And I think that’s been the big question in my life as I got a little older. As a young person, I just was without community. And I really learned about who I am by being connected to others, and that’s why I have such gratitude and a real sincere love for the disability community. There’s a multitude of communities. There’s not just like one monolithic, U.S.-based community. But I’m definitely part of multiple communities. And with #CripTheVote, I think this is just a way of creating a space that didn’t exist before even though there were people who deeply cared and talked a lot and shared and expressed their interest in civic and political participation. But there wasn’t a way to kind of organize it. So, 2015, in the winter, this was a time when there were so many candidates, and very few were talking about disability or even saying the word “disability.”.

And I’m friends with Gregg Beratan and Andrew Pulrang, and the three of us have never met in life, we’ve never met in real life. And we were friends on Facebook and on Twitter, and Greg, he messaged Andrew and I one day and said, “Hey, what do you think about the three of us trying to do something for the 2016 election? Like something about disability and the presidential election?” And we had a few meetings. We had some discussions, and we didn’t have any resources. We’re not, we’re just three individuals who are just kind of nerds about politics. And we thought hey, we’re all on Twitter. Why don’t we just see what we can do starting with a live tweet. And our first event was live tweeting a Democratic debate in February of 2016, I believe. So, I came up with the hashtag, #CripTheVote, and it was kind of purposely a riff on Rock The Vote, just something very short, something that I think would be memorable, a hashtag for people to remember what they are so they can use them.

And we were intentional about the word “crip.” And clearly, a lot of people don’t like the word. A lot of people are uncomfortable with the word, both disabled people and non-disabled people. But talking about culture again, the work “crip” is a very political and cultural identity. So, this tag really signifies — at least this is my intention with that tag — that this is something for us and by us. And you know, just I think it resonated with a lot of people, and they were, people were ready and hungry to participate. And I think this is, we’ve always been present. I think it’s just giving the outlet and the space for us to really fully, fully be present. And that’s been a beautiful thing to see.

VALLAS: Rebecca Cokley, would love to bring you in here just a little bit. There’s a lot more to get into in this book, and I would love to delve into some of the specific essays and contributions, one of which actually you are a contributor to, Patrick. But before we go there, as we talk about Crip The Vote, and it’s now been around for a number of years, has really created significant space for conversations that focus on a disability lens applied to the issues of the day that are often being debated on the debate stage. But without disability as a lens, it’s been incredibly important as not just a source of community, but also as a platform to create a spotlight and to share information so that the tremendous bloc that are disabled voters — one in five to one in four Americans right — can be informed and can bring that as they think about what it means to cast a ballot.

Cokley, I would love to hear you talk a little bit about the significance of thinking about disability as a lens in an election year that is also the year 2020, the year of coronavirus, the year of so much that has been cast in terms of survival rates or mortality rates, but that almost never is actually discussed with a disability lens, erasing the people who may be in the tens of thousands, hundreds of thousands, even at the end of all of this, who are now newly joining the disability community. This is something you have been talking extensively about and which is inherently political in a moment like this.

R. COKLEY: Thanks, Rebecca. You know, it’s something that I think about all the time. And the first thing that I would really want to say upfront is that to me, Crip The Vote is, short of the conversation back in the ’80s that Lex Frieden had on the West Executive Driveway at the White House with George H.W. Bush the day of the Challenger explosion, where they decided that they were going to work on the ADA, Crip The Vote is the single most important political moment for the disability community. The creation of Crip The Vote was a game changer and continues to be a game changer. And I think it’s reaffirmed to me every time I’m talking to a campaign or somebody who’s starting to run for office, and they bring it up to me before I bring it up to them. And I think that was, I remember actually the first person who said it to me. And it was Julian Castro’s campaign that were like, “Oh, we totally watch Crip The Vote. Like anyone who doesn’t watch Crip The Vote doesn’t have their finger on the pulse of the disability community.” And it was just like, wow! I didn’t have to bring it up first! And oh, my god. This is cool. I can’t wait to tell Alice about this later, you know? And so, I think the fact that it has become a go-to tool and resource for folks in the political space is, it’s a monumental achievement. We haven’t seen anything like that before to that degree. And I don’t think it always gets the amount of kudos and credit that it deserves, though we here at Off-Kilter are obviously huge Crip The Vote stans.

When I think about this moment and particularly COVID, it really is true that the only way we’re going to get through this, the only way we move past this and can even think about — and I hate the phrase “a new normal.” Like we really, it’s in the list of phrases I think we need to retire — but when we think about life through COVID, we really do need to apply a disability lens. And to me, thinking about the fact that this will probably create the biggest boom in the disability population post-AIDS and HIV in the 1980s and before that post-sort of the mass acknowledgment of PTSD for folks that came home from Vietnam. This is a game changer. This is a societal changer. And what we know is every time there’s some sort of monumental event like this, historically, we end up seeing disability policy and frankly, the social safety net shift and change as a result of it. You know, the challenges that we’re currently facing, obviously, is we have an administration that doesn’t want to change. We have an administration that is fundamentally trying to hurt people and hit people who are already vulnerable, put them into a position of even greater vulnerability by the decisions that they’re making on a daily basis. Whether it’s about whether or not we open schools, whether it’s about providing adequate amounts of PPE and supports to frontline staff and people with disabilities who need those supplies at home, the discussion of COVID is nothing but political.

And when I have conversations with people, and they’re like, “Oh, this isn’t a political thing. This is something else. This is a cultural moment. This is a healthcare thing.” And it’s like, you have lost your — I’m trying to make sure that I’m monitoring myself for ableism right now — you are from outer space if you believe that this is not a political moment. And that there is not a fundamental impact on both the political nature of our country, but also the rules and governing bodies that we claim to live by, these values that we espouse ourselves to as citizens of the world as we sit and watch people in congregate settings — whether they be nursing homes, whether they be prisons, whether they be psychiatric institutions or internment camps at the border — die because of a lack of government action.

VALLAS: Well, and Alice, the last time that you were on Off-Kilter we were talking — this feels like almost a different lifetime. It was back in March or April, right — we were talking at the very early edge of that pandemic about the topic of healthcare rationing, which was very much starting to be debated and very explicitly in the context of potential ventilator shortages in hospitals as a potential result of the coronavirus pandemic. This is a very personal issue for you because you are a vent user in daily life. And I have to say, I was really struck in sort of starting to page through your new book and kind of getting a sense of the structure and the table of contents and the types of essays. The leadoff essay in the book is by a lawyer who is no longer with us, Harriet McBryde Johnson. It’s an essay that was originally published in 2003 where McBryde Johnson is debating a Princeton professor who thought people like McBryde Johnson effectively shouldn’t exist. It’s a modern-day discussion effectively, a disability eugenics continuing to exist in this century, something that people who are listening might think well, no, that’s something from prior eras. Or is that even really something that ever happened in the United States? That particular essay leading off this anthology just felt so incredibly timely, given the recency of this debate, which should never have been a debate, about healthcare rationing in the context of this pandemic or in any context! Talk a little bit about your choice to lead off the anthology with that essay. And then, Patrick, I’m going to bring you in because I know you have a lot of thoughts about this essay.

WONG: Oh, thank you. So, the order of the essays happened, I think, the winter of late-2019. So, the manuscript was almost pretty much done in November, December of last year. And I did not realize that the pandemic was coming around the corner, but the purpose of this essay by Harriet McBryde Johnson, placing it at the very front and the very first thing was very intentional by me. Because number one, this was an essay that changed my life. It was an essay that I read when it came out. It just resonated so deeply with me and how I felt like she was bringing to life for the public, for so many broader audiences about the very real, the real…the realities that disabled people face. And as you read in the very first sentence in my introduction about, you know, it’s not easy being disabled in a non-disabled world. I think Harriet’s essay brilliantly, really complexly depicted that. And I think I don’t expect every reader to finish the book or start it from beginning to end. But that if there is one essay that they read, I do hope it’s Harriet’s, because it captures so many things that are pretty evergreen in terms of accessibility, about interdependence, about the way that we are still seen as disposable. I think we have disposable and hidden and unvalued, undervalued for centuries, if not millennia.

Just to bring in what’s going on now, as Rebecca mentioned earlier about congregate settings, one thing to come out of this conversation and these events, especially with uprisings regarding racial justice and protesting against police violence is the fact that people are learning about abolition. And I really do believe that abolition of congregate settings and of systems that don’t work is the future. It’s something that we have to grapple with now, because there’s no point, just like congregate settings, like any sort of nursing home, assisted living, psychiatric hospital, no amount of money or staffing is going to fix it. So, I’m really kind of glad that these times that we’re in right now is making people think about this and hopefully think a little bit more deeply about these issues.

But I do believe that Harriet’s essay is just, it’s breathtaking. It’s a punch to the gut. And I really, for people who are non-disabled reading this, I want this to really be an eye opener. This is like it is some real talk. And, you know, I really do hope that for people who are disabled, that they never had learned about Harriet and read a book kind of about her life because she is a disabled ancestor. And I think Rebecca and I have talked about this quite often, is the fact that there’s so many reasons such as the medical-industrial complex, white supremacy, all of these things where people don’t actually often get to reach an older age. There’s so many of us that know people who died of way before they should’ve died. There’s people who should still be with us today. And I do want to mention that one of my dear friends, Stacey Park Milbern, she died just several weeks ago, in May of this year. And she is one of the contributors. And it’s kind of ironic, but her essay was about disabled ancestors, and she’s now one of my ancestors, one of our ancestors. And you know, it’s just it’s a little bittersweet with this book coming out because I know that she would’ve enjoyed it. I know she would’ve loved it. And I think a lot about her. And I think about the people that are with us now, and how can we celebrate us now while we’re alive, not until we’re dead, and finally people are like, oh! I didn’t know all these things that this person did. I want people to appreciate and lift us now, while we’re alive.

VALLAS: [sighs] I want to send you best wishes, and also to all of you, for all of the people that folks have lost, in particularly recent months. There’ve also been a lot of really significant losses for the disability community this year, and just want to acknowledge that.

Patrick, I would love to bring you in to comment a little bit on that incredibly powerful essay that Alice was just speaking about. But Alice also referenced the recent and ongoing uprisings around police brutality and structural racism within law enforcement and so much more. And in many ways, you are one of the signatories on a letter, which is included in this anthology, which could not be more timely, given that current conversation and the erasure of disability and disabled Black lives from so much of that conversation. So, I would love for you to spend a little bit of time actually telling the story behind the letter from the Harriet Tubman Collective that appears in Alice’s anthology, which sends a very strong message about this current moment, even though it was written prior to the events of the past month or so.

P. COKLEY: Sure. You know, I think that there’s one of the really powerful things about the anthology that Alice has pulled together is its lasting power and the cultural engagement that it has the ability to create across our multiple communities. When I grew up in the libraries of my father and my grandfather, there were anthologies such as this on their shelves like Liberation or African Congress or Talk That Talk that really attempted to capture not just a singular moment, but all of, or a broad range of, the relevant thought that was going on in the quest for freedom and inclusion and justice and Black identity. And I think that in a disability sense, this anthology is very much, well, not just a disability sense, I think this anthology is very much on par and will be easily listed to those texts. And not just because of its discussions about disability, but because of the multiple discussions that come out. And I think the inclusion of the text from the Harriet Tubman Collective discussing the engagement with the Movement for Black Lives is very important to that end.

We mentioned earlier that there’s always been sort of this discussion or this idea that the disability community has this sort of monolithic identity or that there is sort of a one universal experience, and that’s the only piece that identifies you as a person with a disability. What Alice has done in gathering all of these different essays and all of these different perspectives is really shine a light on what a lot of us working in multiple communities know, that it is a multifaceted, diverse, and engaging pool of individuals that are striving not just toward justice, but striving toward inclusion, and really doing things in which they are attempting to bring that inclusion to the forefront in multiple spaces, sometimes in our own personal spaces and sometimes out in the broader sense of the world. The discussions that the Harriet Tubman Collective had specifically with the Movement for Black Lives was tied first, to the desire that I think is mentioned in several different essays about freedom throughout the book, which is that if one of us is to get free, then we all have to get free.

The events that had started taking place even as far back as Ferguson motivated a significant number of Black activists with disabilities and activists of color to want to be more involved in that movement and make sure that disability wasn’t lost in that discussion. And so, I think if you go and read that statement, you’re not only reading the desire of activists with disabilities to ensure that disability was part of this movement and part of the way to make sure that freedom was there for everyone, but also a lot of the disappointment and rage and anger, as well as the hardcore desire for change that existed in the hearts of a lot of Black activists when, again, we get to a place where we see a part of our identity that’s important being purposefully erased or left out. Specifically being our disability identity or references to audism, references to, frankly, types of other-ism, homophobia, queer identity, and really casting away this idea that we can only advocate for one piece of our identity at a time. And so, a lot of those things came to bear as you had activists going out with good faith, looking to be a part of the movement, and then finding out that even though they were approaching some of these things with good faith, they were not able to bring their whole selves to the table.

So, the statement is very much about explaining how these things should be taking place, what the importance is of inclusion of disability, but also the dangers that are faced if we allow any sort of movement to start to blossom and grow that specifically sacrifices the needs or identities of any of its members, because that in itself is a red herring. There is a belief that well, we’ll get freedom for this one group, and then we’ll work on the freedom for other people later. We have a long history where we show that doesn’t work. It didn’t work in the development of the ADA. It didn’t work for women’s suffrage. And it’s not a way to move forward effectively on these issues of systematic racism. So, if we are to get free, then we all have to get free. And that means that we have to create movements that are inclusive of our multiple identities. So, I encourage anyone to read that statement from the Harriet Tubman Collective and learn about the different perspectives, even inside of those groups of advocates, about what they were trying to do and where they were trying to go with a sort of a new form of disability inclusion.

VALLAS: And the statistic, to me, that just that bears repeating in this current moment, because it just seems to be missing from so much press coverage, from so much of the conversation, is that estimates, although we need much better data on so much to do with disability, but particularly disability within the criminal justice system, 60 to 80 percent of police-involved killings are of people with disabilities. And so, that intersectionality of being Black and disabled being something that’s just so incredible, really important and timely to be talking about and rather than only lifting up one aspect of that identity, as you’re describing, Patrick.

Alice, to go back to you for just a moment and to the book, it seems to me to be very much at the same time both for disabled people and for non-disabled people. The dedication to the book reads that it’s to your “younger self and all the disabled kids today who can’t imagine our futures. The world is ours,” you write, “and this is for all of us.” But at the same time, the book very much, and the introduction to it, you really kind of offer multiple, very specific messages that are very clearly for non-disabled readers, messages about a sort of mix that you want to call bullshit on, like it’s too hard to find disabled writers, right? Something that you’ve been instrumental along with s.e. smith and Vilissa Thompson and others in creating networks of disabled writers to be able to connect people who don’t know how to do better with sort of a Rolodex at their fingertips. You also talk about the need for greater representation in the publishing industry. And you lift up this incredibly stark statistic, that according to a 2019 survey, that there’s almost no disabled people represented in publishing: 11 percent versus 89 percent identify as disabled versus non-disabled. And in publishing the greatest disparity among race and ethnicity, gender, sexual orientation, you say very explicitly, we need disabled people in these jobs, or else we’re not going to see our stories told. With all of that sort of as an effort to summarize some of the many messages that you kind of throw together for non-disabled readers, how did you approach bringing together an anthology that is simultaneously for both of those audiences, if I’m right in that read? And what are you hoping comes from it on both sides?

WONG: Yeah, I mean this is definitely a tricky thing. It was quite a dance in terms of what do I center? What am I centering? And for me, I think one of the things that was most important in this book, and it sounds very, very narcissistic, but it’s, does this book please me? I think it’s just it does. So, first, I want it to be something I was proud of, something I felt good about releasing into the world like a little baby and watching it grow. And I was very explicit, I think, in the introduction, saying that this is… it should be very clear, hopefully, to the readers that this is intentionally centered on disabled lives and that this is not going to be a Disability 101. We’re not going to hold your hands and write in a way that placates to what we presume is the broader audience. And again, this is a reckoning happening in publishing, right, that the default assumed audience is white, middle class, non-disabled, cishet people. And I think that for a long time, publishing has gone by these conventions, and they’ve always geared what they publish and who they accept, who they hire based on what they think the audiences want.

And I personally am trying not to listen to those kinds of impulses in my mind about will this be successful? Will this sell? You know what? It’s like, this is something that I believe I personally take pride in and that I do think it brings some joy and comfort and also hopefully something that people who are disabled can really connect with. That, to me, is a priority for me. At this is all done with a spirit of bringing people in. You are welcome to our center. I’m not going to move my center to get the mass market, you know? I’m just, I’m not interested in that. I want to re-shift the focus on us. And hopefully, people understand that, by look, you can see that very clearly in the way that the book is structured and in the content itself. But I do think this is a time of reckoning of many, many fields, and the fact that publishing is incredibly white and incredibly non-disabled is part of the problem of why we don’t see stories that are authentic and why we don’t have people in power as editors and all throughout the entire publishing industry who should be involved, whether it’s copy editing, creating book covers.

And I also think in terms of that survey, I think we all know that because there isn’t that same visibility of disabled people, the actual numbers of disabled people who are working in this industry is probably higher, but they don’t identify for many reasons. So, these are all kind of inter-related, right? I think until we move the culture forward or people feel fully embraced as they are, we’re not going to get parity.

VALLAS: I have to say I wish I had all day to talk with you guys because I have like 18 other things that I wanted to talk about. But we only really have a few minutes left. Alice, as you’re talking and, you know, I’m someone who believes very strongly in manifestation, so to help you manifest one of the goas in your introduction, I feel like we should give voice in this podcast to a call that you make for a disability-centered imprint at one of the big five publishers that’s led by disabled editors. You note that this wouldn’t fix everything, but it would be a hell of a start. So, I would love to give some voice to that and get some energy flowing towards it as something that I agree is incredibly long overdue.

But in the last couple of minutes that I have with all of you, I’d love to just sort of just have a kind of a lightning round closing of what your one — I don’t want to ask people to pick favorites — but one piece from the book, a contribution or a concept or a thought that was particularly moving for you that you would want to leave with our listeners who hopefully are going to, after they listen, go and check the book out. We’ve got information about how you can find it on our nerdy syllabus page, of course, on Medium. But would love to sort of offer that question to each of you, given that there are so many wonderful and rich and diverse parts of this book. So, again, not asking you to pick favorites, but one that you want to share and close with. And Cokley, I’ll go first to you.

R. COKLEY: It’s actually kind of, it was timely when this book came out because we ended up redecorating our kids’ rooms. And so, we were moving furniture around and turned our home office into our daughter’s bedroom. And as we were moving stuff around, I found this ginormous white bag from Kinko’s that quite literally could have fit like four Little People in it, it was so big. And there were a bunch of giant photos in there, and they were photos of Ki’tay Davidson. And they were photos that his partner, TL Lewis, who’s a contributor in this piece, and his best friend, Allie Cannington, had procured for his memorial service several years ago. And at the time, after the memorial service, they had asked me to take them with me because I was the only person with a car. And there’s a lot about the passing of Ki’tay that’s, there’s, I mean, we could do hours just talking about Ki’tay. But the ability to pick up this book and visit with friends who are no longer here is really powerful. I mean, Alice, you referenced our friend Stacey, and I met Stacey Park Milbern when she was in high school. And I met Ki’tay when Ki’tay was in undergrad, and I had literally just had Jackson a few weeks before that. You know, Harriet McBryde Johnson is gone. Just to be able to reach over to your bookshelf and quite literally visit with your friends, I think, is a powerful thing at any time, but especially given the time that we’re in.

And as you said, Alice, which I think is particularly important, we don’t have a lot of elders. In other communities, elders are in their 80s and 90s. That’s a luxury we don’t have in the disability community. And being predeceased by your mentees and your proteges is a much more common reality. And so, to me, that was the most beautiful thing about this particular collection.

VALLAS: Patrick, I’ll go next to you, and then, Alice, you’re going to get the last word.

P. COKLEY: Sure, of course. You know, I think one of the great things about the collection is its diversity. In addition to the discussion from the Harriet Tubman Collective, you have Jen Deerinwater’s piece about what it means to be an Indigenous person and the unique ties to disability that you have as a part of that community. As well as Jeremy Woody’s story, about the significant numbers of individuals in prison and how a lot of the folks with disabilities, those are people. And I think TL Lewis referred to prisons as the new institutions, at times. So, you know, there’s a lot of sort of really wonderful pieces in here that I think will be mainstays for disability identity. I very much, you know, I got sucked in during my first read where I said I’m just going to read the first piece. And after Harriet McBryde Johnson’s, which was really salient for me also being from South Carolina, you know, I realized that a couple of hours had passed, as I sort of done as Becca said and casually revisited old friends and lines of thought and flipped ahead to see who else that was going to be in there.

I think one of my favorite pieces, however, though, that I’ll reference was the one by Maysoon Zayid, specifically because it talked about the intersection of being Muslim and fasting, as well as having a disability, and also reminding us that there is levity and laughter and love in all of our communities. And sometimes, managing your disability, you do just have to laugh. And so, that was really great.

VALLAS: And Alice, it would be deeply unfair to ask you to pick any favorite parts of this book, but any sort of closing pieces that you want to leave us with or sort of closing selections that you want to point listeners to.

WONG: Oh, thanks for that. So, I think as Becca mentioned earlier, the piece by Stacey and also the piece by TL Lewis are absolutely, I take, gems and really give us, give the readers, a sense of the people that have really changed the world and who are no longer with us, but we can remember them and honor them. And for people who are discovering Ki’tay and Stacey for the first time, I really do hope that they want to learn more. So, I think the piece that I would recommend that wasn’t mentioned yet is the piece about the joy that comes from being together. It’s like us right now having this conversation! The very last piece in this book is by s.e. smith, and the title is The Beauty of Spaces Created For and By Disabled People. So, in a lot of ways, I was very specific about starting with Harriet’s being incredibly dense and serious and complex but also leaving the very end of the book about this sense of joy and magic and this kind of thing that you feel when disabled people are together, which I think in a lot of ways is like this book as well. This book is a space. Each one of these essays are actually in dialogue with one another. And there actually are quite few interconnections if people read every essay. But there are a lot of the similar names and references. So, I hope that people enjoy discovering and diving deep.

VALLAS: I’m going to close with some of the closing words in your introduction, Alice. You write, “Disabled people have always existed, whether the word disability is used or not. To me, disability is not a monolith, nor is it a clear cut binary of disabled and nondisabled. Disability is mutable and ever-evolving. Disability is both apparent and non-apparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is socio-political, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.” You continue, “As a marginalized person, I don’t feel it’s enough to keep saying, ‘Hey, pay attention to us. We’re here! We exist! We’re just as human as you!’ I want things to improve,” you write, “even while grappling with this impulse, with the tension between ‘subject’ and ‘audience.’ I want to center the wisdom of disabled people and welcome others in rather than ask for permission or acknowledgement. Harriet McBryde Johnson wrote that storytelling is an activity, a shared experience, not an object. Collectively, through our stories, our connections, and our actions, disabled people will continue to confront and transform the status quo. It’s who we are.”

It’s been such an absolute pleasure and honor talking with all three of you this morning about this incredible book. And congratulations again, Alice. It’s just truly an achievement. And it’s just been absolutely wonderful speaking with you on Off-Kilter about it. Alice Wong is the editor of Disability Visibility: First-Person Stories from the Twenty-First Century. That’s, of course, the title of the book. You can find it on our nerdy syllabus page. Rebecca Cokley is the director of the Disability Justice Initiative at the Center for American Progress, also one of the contributors to the anthology. And Patrick Cokley is the administrator of the Lead On Update and also a contributor to the anthology, that Harriet Tubman Collective piece that he was just speaking about. Thanks so much to all of you for taking the time. And just again, another round of congratulations, Alice, on this incredible book.

WONG: Aw, this was a lot of fun. Thank you so much.

VALLAS: And that does it for this episode of Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas. The show is produced by Will Urquhart. Transcripts are courtesy of Cheryl Green. Find us on the airwaves on the We Act Radio Network and the Progressive Voices Network, and say hi and send us your show pitches on Twitter @OffKilterShow. And of course, find us anytime on iTunes or wherever you get your podcasts. See you next time.

Off-Kilter is the podcast about poverty and inequality—and everything they intersect with. **Show archive 2017-May ‘21** Current episodes: tcf.org/off-kilter.