{"id":2341,"date":"2020-04-30T10:00:41","date_gmt":"2020-04-30T09:00:41","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-humanities\/?p=2341"},"modified":"2021-07-23T09:44:25","modified_gmt":"2021-07-23T08:44:25","slug":"disability-visibility-and-the-covid-19-crisis","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-humanities\/2020\/04\/30\/disability-visibility-and-the-covid-19-crisis\/","title":{"rendered":"Disability, Visibility and the COVID-19 Crisis"},"content":{"rendered":"

Podcast Interview with Alice Wong<\/strong><\/p>\n

Alice Wong is a disabled activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project\u00ae (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.<\/p>\n

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\u00a0Disability Visibility: <\/em>First-Person Stories from the Twenty-first Century,<\/em><\/a> an anthology of essays by disabled people, coming out June 30, 2020 by Vintage Books.<\/p>\n

Listen to the podcast on Soundcloud<\/a>.<\/p>\n

Read the transcript of the podcast below:<\/p>\n

 <\/p>\n

\"\"BRANDY SCHILLACE: Good morning, and welcome back to the Medical Humanities Podcast<\/em>. This is Brandy Schillace, Editor in Chief. Today, I\u2019m 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\u2019re really excited to have Alice today, because in the light of the COVID-19 coronavirus outbreak, I think disability visibility becomes even more important.<\/p>\n

Alice, thank you for being with us.<\/p>\n

ALICE WONG: Oh, thank you so much for having me, Brandy.<\/p>\n

BRANDY: I\u2019m 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.<\/p>\n

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\u2019s 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.<\/p>\n

BRANDY: And what\u2019s sort of your main goal through the Disability Visibility Project? Because I know there\u2019s a lot of different wheels turning for you. What is it that you hope to achieve most?<\/p>\n

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\u2019s a lot of activism. There\u2019s a lot of storytelling. You know, it\u2019s all interconnected. And I think one of the latest things I\u2019m doing I\u2019m really excited about is that I\u2019m the editor of a new anthology that\u2019s coming out this summer called Disability Visibility: First Person Stories From the 21st<\/sup> Century<\/em>. And it\u2019s available now, and it\u2019s really been a labor of love. There\u2019s gonna be 37 stories by disabled people from the 21st<\/sup> century that I\u2019m just super, super proud and excited about.<\/p>\n

BRANDY: That\u2019s 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.<\/p>\n

ALICE: Mmhmm.<\/p>\n

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.<\/p>\n

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.<\/p>\n

BRANDY: Mmhmm.<\/p>\n

ALICE: So, I think there\u2019s a lot of kind of room and a lot of space that\u2019s necessary in order for more diverse folks to be part of these conversations and to be the decision makers.<\/p>\n

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\u2019t remember what the issue was, but they couldn\u2019t come to the classes. And at the time, the university said, \u201cWe\u2019re unable to do that.\u201d We simply couldn\u2019t do that.<\/p>\n

ALICE: Mmhmm.<\/p>\n

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\u2019s a lot of difficulties and problems with that. But could you tell us a little bit about what that\u2019s like to, on one hand, be demanding access, and on the other hand, seeing access come only when we\u2019re in these crisis times?<\/p>\n

ALICE: Yeah. It was really very bittersweet and ironic because I think for so many people like myself, we\u2019ve been asking nicely. We\u2019ve been demanding. We\u2019ve 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\u2019s an online class, whether it\u2019s a Zoom conference, whether it\u2019s 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, \u201cIt\u2019s a burden,\u201d right? Or, \u201cIt\u2019s a hardship,\u201d or \u201cWe just can\u2019t. It ruins the integrity of what we\u2019re trying to do.\u201d<\/p>\n

BRANDY: Ah, yeah. I\u2019ve heard that.<\/p>\n

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\u2019s taken away from them, suddenly, things materialize. And suddenly, everybody\u2019s discovering the wonders of Zoom.<\/p>\n

BRANDY: [laughs]<\/p>\n

ALICE: And it\u2019s really odd. And I think, without going too salty, I\u2019ll 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.<\/p>\n

BRANDY: Mmhmm.<\/p>\n

ALICE: Because I think about wishing that normal would return, and I really hope that listeners realize that normal wasn\u2019t great for a lot of people.<\/p>\n

BRANDY: Exactly.<\/p>\n

ALICE: You know, post-pandemic, hopefully\u2014because there will other pandemics. There will be other major crises\u2014I think my little hopeful note is that people are more mindful and that they start kind of building in access with everything they do.<\/p>\n

BRANDY: Mmhmm.<\/p>\n

ALICE: And that\u2019s my hope!<\/p>\n

BRANDY: Mmhmm. And I think too, I think in terms of access also, job interviews and conferences. You said academe is a very difficult\u2014I\u2019m sort of academic-adjacent, I suppose. I\u2019m not actually in academe myself. But to be able to go to conferences is very experience.<\/p>\n

ALICE: Mmhmm.<\/p>\n

BRANDY: And it\u2019s not just, I mean there\u2019s 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\u2019m 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\u2019ve 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\u2019re 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\u2019s 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.<\/p>\n

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\u2019re facing shortages. They\u2019re not gonna have, because all these really ridiculous folks are hoarding it and prescribing it when it\u2019s not even a proven treatment.<\/p>\n

BRANDY: Right.<\/p>\n

ALICE: So, that\u2019s an example of something that\u2019s 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.<\/p>\n

BRANDY: Mmhmm. And that\u2019s before we get to the concept of shortages of ventilators.<\/p>\n

ALICE: Yeah! And there\u2019s 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\u2019re both older as well. So, we\u2019re a high-risk family, and these online grocery services are completely overrun. And I\u2019ve had delays on my orders like two or three weeks. It\u2019s just very, there\u2019s no kind of way to prioritize.<\/p>\n

BRANDY: Mmhmm.<\/p>\n

ALICE: So, it\u2019s very, it\u2019s very frustrating. Because there are other people who clearly do have options, and yet they\u2019re clogging up lifelines that a lot of us have no other choice to use.<\/p>\n

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\u2019re told that it\u2019s inconvenient. And I think in some ways, some of the\u2014for instance, online ordering of groceries\u2014people 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.<\/p>\n

ALICE: Yeah. I think one person\u2019s inconvenience or one person\u2019s convenience is one person\u2019s life or death option.<\/p>\n

BRANDY: Mmhmm.<\/p>\n

ALICE: I feel like this is another thing that\u2019s such a message of privilege. If we even think about the way testing is organized, it\u2019s very much about car culture.<\/p>\n

BRANDY: Mmhmm.<\/p>\n

ALICE: And you think about all the people that take buses or people who don\u2019t 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\u2019re really centering. And very often, they\u2019re not centered on the most marginalized.<\/p>\n

BRANDY: No, no. And I think that\u2019s one of the reasons that we didn\u2019t, we chose the word \u201caccess\u201d to focus on rather than talking about it in a smaller way \u2018cause 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\u2019s 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.<\/p>\n

ALICE: Mmhmm.<\/p>\n

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\u2019s a real opportunity, I think, for us to make disability visible.<\/p>\n

ALICE: I really hope so. And I think that this is, it\u2019s not meant to make people feel guilty or defensive. But it\u2019s 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\u2019s one message I could share, it\u2019s that we all have this capacity to create access and that we have power to do that.<\/p>\n

BRANDY: Yes. Absolutely. That\u2019s wonderful. Are there any resources or directions you would like to guide our listeners to while we\u2019re on: any websites or book projects or other things that you might want people to check out?<\/p>\n

ALICE: Well, folks can find my work at DisabilityVisibilityProject.com, and I\u2019m 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\u2019s really promoting the idea that access is lot more than just a afterthought. It\u2019s a lot more than just compliance to a law. It\u2019s actually a form of love.<\/p>\n

BRANDY: Mm.<\/p>\n

ALICE: When you actually care about the people around you and about your community, you will fight for access.<\/p>\n

BRANDY: That\u2019s beautiful. I love that. We\u2019re 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\u2026.<\/p>\n

ALICE: Transcript!<\/p>\n

BRANDY: Transcript! Thank you. [laughs] We\u2019ll also be putting up a transcript of today\u2019s 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?<\/p>\n

ALICE: Well, I think it\u2019s definitely a scary time, and I think as we\u2019ve seen, sometimes there\u2019s that phrase, \u201cWe\u2019re all in this together.\u201d I think it\u2019s, 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.<\/p>\n

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\u2019re so happy to have had you on today.<\/p>\n

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

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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\u00ae (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 […]<\/p>\n

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