Disability, Visibility and the COVID-19 Crisis

Podcast Interview with Alice Wong

Alice Wong is a disabled activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project® (DVP), an online community dedicated to creating, sharing and amplifying disability media and culture created in 2014. Alice is also a co-partner in four projects: DisabledWriters.com, a resource to help editors connect with disabled writers and journalists, #CripLit, a series of Twitter chats for disabled writers with novelist Nicola Griffith, #CripTheVote, a nonpartisan online movement encouraging the political participation of disabled people with co-partners Andrew Pulrang and Gregg Beratan, and Access Is Love with co-partners Mia Mingus and Sandy Ho, a campaign that aims to help build a world where accessibility is understood as an act of love instead of a burden or an afterthought.

Today, she joins EIC Brandy Schillace on the MH Podcast to discuss increasing accessibility for people with disabilities, and how the present pandemic is both creating new challenges, but also opening new possibilities. Alice is the Editor of Disability Visibility: First-Person Stories from the Twenty-first Century, an anthology of essays by disabled people, coming out June 30, 2020 by Vintage Books.

Listen to the podcast on Soundcloud.

Read the transcript of the podcast below:

 

BRANDY SCHILLACE: Good morning, and welcome back to the Medical Humanities Podcast. This is Brandy Schillace, Editor in Chief. Today, I’m very excited to have with me Alice Wong, who is a disability activist, media maker, and consultant, and also the founder and Director of Disability Visibility Project, which is a community partnership with StoryCorps. We’re really excited to have Alice today, because in the light of the COVID-19 coronavirus outbreak, I think disability visibility becomes even more important.

Alice, thank you for being with us.

ALICE WONG: Oh, thank you so much for having me, Brandy.

BRANDY: I’m really excited to hear from you. I wonder if you could tell our listeners a little bit about Disability Visibility Project just to get started.

ALICE: Sure thing! I started out initially as a oral history project with StoryCorps, which is a national oral history non-profit. But now, it’s an online community dedicated to creating, sharing, and amplifying disability media and culture. So, I have a blog, I publish essays, I have a podcast. I dabble in a lot of things.

BRANDY: And what’s sort of your main goal through the Disability Visibility Project? Because I know there’s a lot of different wheels turning for you. What is it that you hope to achieve most?

ALICE: Well, I think the main goal is to provide a space: a space for us to tell our stories, a space for us to find each other, and a space for us to really mobilize. So, there’s a lot of activism. There’s a lot of storytelling. You know, it’s all interconnected. And I think one of the latest things I’m doing I’m really excited about is that I’m the editor of a new anthology that’s coming out this summer called Disability Visibility: First Person Stories From the 21st Century. And it’s available now, and it’s really been a labor of love. There’s gonna be 37 stories by disabled people from the 21st century that I’m just super, super proud and excited about.

BRANDY: That’s wonderful. You know, one of the things that came across to us last year during our push for global health Humanities at MH was how often we end up hearing about people but not hearing from them.

ALICE: Mmhmm.

BRANDY: So, I think this is really important. Because having discussions with and hearing from people in the community, as opposed to a kind of top-down anthropological telling about them is critical for really understanding what the situation is like.

ALICE: Absolutely. And I feel like this is a broader discussion about kind of who gets to be in this field. I mean, we think about academia. We think about the Humanities and how difficult it is for so many people to make it through higher education and professional education too.

BRANDY: Mmhmm.

ALICE: So, I think there’s a lot of kind of room and a lot of space that’s necessary in order for more diverse folks to be part of these conversations and to be the decision makers.

BRANDY: Yes. Absolutely. Plus, I think one of the interesting points that you just brought up is about the difficulties of access. Our focus this year at Medical Humanities has to do with access broadly considered. And I recall, when I was a professor years ago, having a student who had asked if they could take online classes because of, I believe at the time, I can’t remember what the issue was, but they couldn’t come to the classes. And at the time, the university said, “We’re unable to do that.” We simply couldn’t do that.

ALICE: Mmhmm.

BRANDY: Now, in light of coronavirus, we see actually, it is possible! All the universities have had to go to online learning and distance learning. And I know that there’s a lot of difficulties and problems with that. But could you tell us a little bit about what that’s like to, on one hand, be demanding access, and on the other hand, seeing access come only when we’re in these crisis times?

ALICE: Yeah. It was really very bittersweet and ironic because I think for so many people like myself, we’ve been asking nicely. We’ve been demanding. We’ve been asserting our rights under the Americans with Disabilities Act. And yet, for so many of us, having these very simple different ways to participate, whether it’s an online class, whether it’s a Zoom conference, whether it’s doing something by email versus by phone, these are things that disabled people have been fighting for years if not decades. And very often, the response has been, “It’s a burden,” right? Or, “It’s a hardship,” or “We just can’t. It ruins the integrity of what we’re trying to do.”

BRANDY: Ah, yeah. I’ve heard that.

ALICE: Yeah, of course. And as we see now, once a little class of non-disabled people have their lives interrupted, and once they have something that they take for granted that’s taken away from them, suddenly, things materialize. And suddenly, everybody’s discovering the wonders of Zoom.

BRANDY: [laughs]

ALICE: And it’s really odd. And I think, without going too salty, I’ll just say that I really do hope that after this pandemic, that the upside will be that all these institutions and organizations maintain these options and rely on them, you know? Because I think access adds value for everybody, and if we can just maintain this rather than returning back to normal.

BRANDY: Mmhmm.

ALICE: Because I think about wishing that normal would return, and I really hope that listeners realize that normal wasn’t great for a lot of people.

BRANDY: Exactly.

ALICE: You know, post-pandemic, hopefully—because there will other pandemics. There will be other major crises—I think my little hopeful note is that people are more mindful and that they start kind of building in access with everything they do.

BRANDY: Mmhmm.

ALICE: And that’s my hope!

BRANDY: Mmhmm. And I think too, I think in terms of access also, job interviews and conferences. You said academe is a very difficult—I’m sort of academic-adjacent, I suppose. I’m not actually in academe myself. But to be able to go to conferences is very experience.

ALICE: Mmhmm.

BRANDY: And it’s not just, I mean there’s these issues of access that are monetary, that are physical, that are even trying to go to job interviews and things like that. And I’m just seeing it could, it could lead to a leveling of the playing field. But what often happens is the minute technology becomes available that could level the playing field, it ultimately is re-used in favor already of the majority. And so, I’ve seen a lot of talk online about how, in the midst of this crisis, when disabled lives ought to be even more visible, in fact, they’re being threatened and sidelined. And this goes all the way to the issues with ventilators and other things. And so, I have the hope too that things will get better on the other side of this, but there’s always this fear that if we slow down at all in what we ask for, it will still be used against us instead of for us.

ALICE: Oh, sure. I think this is where cooptation is very real. And I think we can see this right now with the medications that the president is promoting, like hydroxychloroquine. Because there are people with chronic illnesses who actually need it now, and they’re facing shortages. They’re not gonna have, because all these really ridiculous folks are hoarding it and prescribing it when it’s not even a proven treatment.

BRANDY: Right.

ALICE: So, that’s an example of something that’s already there for people who need it. But like, for example, alcohol swabs or hand sanitizer and all these fools are just hoarding and buying up stuff that will really take away the very really needs of disabled and sick people.

BRANDY: Mmhmm. And that’s before we get to the concept of shortages of ventilators.

ALICE: Yeah! And there’s all kinds of shortages, but I think if we even think about the most basic thing, about food, the fact that for myself, I cannot go out and buy groceries. I live with my parents. They’re both older as well. So, we’re a high-risk family, and these online grocery services are completely overrun. And I’ve had delays on my orders like two or three weeks. It’s just very, there’s no kind of way to prioritize.

BRANDY: Mmhmm.

ALICE: So, it’s very, it’s very frustrating. Because there are other people who clearly do have options, and yet they’re clogging up lifelines that a lot of us have no other choice to use.

BRANDY: Right. Exactly. And it comes down, again, to you said earlier that when the people with disabilities have reached out before to ask for accommodations, they’re told that it’s inconvenient. And I think in some ways, some of the—for instance, online ordering of groceries—people are doing that for convenience, not necessarily because they have to. And so, you have yet another situation where convenience and inconvenience are very interesting words to parse in the middle of a crisis like this.

ALICE: Yeah. I think one person’s inconvenience or one person’s convenience is one person’s life or death option.

BRANDY: Mmhmm.

ALICE: I feel like this is another thing that’s such a message of privilege. If we even think about the way testing is organized, it’s very much about car culture.

BRANDY: Mmhmm.

ALICE: And you think about all the people that take buses or people who don’t have access to transportation. How do they get tested? And I think these are all these different kind of questions about how things are designed and who they’re really centering. And very often, they’re not centered on the most marginalized.

BRANDY: No, no. And I think that’s one of the reasons that we didn’t, we chose the word “access” to focus on rather than talking about it in a smaller way ‘cause access can mean many different things, is the moment we try to limit it, we realized access is a part of everything. Access is a problem everywhere you look, whether it’s health access, food access, access to spaces, access to care, access to shelter. You know, this is such a big issue, and I think we have, many able-bodied people, have the privilege of ignoring, not thinking about access.

ALICE: Mmhmm.

BRANDY: Not thinking about immobility, not thinking about these things. And they resent being forced to think about it suddenly in their own lives, and they just want it to be over. When in fact, it’s a real opportunity, I think, for us to make disability visible.

ALICE: I really hope so. And I think that this is, it’s not meant to make people feel guilty or defensive. But it’s just an acknowledgement that there are different ways of living and existing, and we all have a role in expanding access. We all have a role, as allies and as disabled people, to create access for one another. And I feel like if there’s one message I could share, it’s that we all have this capacity to create access and that we have power to do that.

BRANDY: Yes. Absolutely. That’s wonderful. Are there any resources or directions you would like to guide our listeners to while we’re on: any websites or book projects or other things that you might want people to check out?

ALICE: Well, folks can find my work at DisabilityVisibilityProject.com, and I’m also part of another projected Access Is Love. And this is a campaign by Mia Mingus and Sandy Ho and I, and this is a website with different resources on making your events accessible, on how to do your social media in accessible ways. But it’s really promoting the idea that access is lot more than just a afterthought. It’s a lot more than just compliance to a law. It’s actually a form of love.

BRANDY: Mm.

ALICE: When you actually care about the people around you and about your community, you will fight for access.

BRANDY: That’s beautiful. I love that. We’re gonna go ahead and put many of these links on the blog post that will accompany our post today, and we will also be putting up a, a….

ALICE: Transcript!

BRANDY: Transcript! Thank you. [laughs] We’ll also be putting up a transcript of today’s talk. And I really am excited to have you on. I hope that we can have you on again. Any last words for those facing crisis because of the coronavirus? Any words of comfort for those with disabilities or words for their allies?

ALICE: Well, I think it’s definitely a scary time, and I think as we’ve seen, sometimes there’s that phrase, “We’re all in this together.” I think it’s, while I do agree the overall idea of it, I think we absolutely have to acknowledge that certain communities are hit by this in far greater numbers. And I think this is, again, an opportunity to really do some serious reflection about the systemic inequality and systemic racism and ableism in our culture, not just in the medical system, but everywhere. And I think this is really difficult questions, but I think these are things we have to talk about.

BRANDY: Thank you. Thank you so much for your work with Disability Visibility Project. Again, this is Alice Wong, who is a disability activist, media maker, and consultant. And we’re so happy to have had you on today.

Listeners, please do join us on the blog and in the journal. And again, thank you for listening and being part of our conversation.

 

 

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