Transcript
Alice Wong in conversation with Dr Aimi Hamraie
[Start of recording]
00:00:11 INTRO [Various overlapping voices] Contra* is friction. Contra* is nuanced. Contra* is transgressive—good trouble. Contra* is questions. Contra* is collaborative. Contra* is a podcast. It’s a space for thinking about design critically. Contra* is subversive. Contra* is texture.
00:00:32 Contra* You are listening to Solidarity Chats: a special section of the Contra* podcast on disability, design justice, and the life world. These episodes, recorded during the COVID-19 pandemic, focus on disability, eugenics, and mutual aid. We’re hoping to capture some of the conversations that disabled people and our allies are having about issues such as healthcare infrastructure, medical triage, eugenics, and technology as it is unevenly distributed across the population. These episodes are also going to come out at a different rate than the regular Contra* episodes, so please make sure to subscribe on Google, Apple, or Stitcher so that you don’t miss any.
00:01:28 Aimi I’m so thrilled to be here with Alice Wong, of the Disability Visibility Project, who was also a guest on Contra* in season one. And we are going to talk today about the coronavirus. So, Alice, I’m sad that these are the circumstances under which we’re coming back together to talk, but I wanted to make sure to highlight your perspective, because I think you have a lot of really important things to say about what’s happening right now. So, what’s your take on how this coronavirus pandemic is affecting disabled people in this moment?
00:02:10 Alice Well, thank you for having me back on. I think it’s really, you know, important for us to all try to have these important conversations together right now. And I think, as you said, I think there’s multiple things happening. The pandemic really has, you know—for a lot of us—we’ve been ready and prepared for this in a lot of ways that nondisabled folks haven’t really understood or prepared for 00:02:47. So like, living under great uncertainty and great instability is not new, and again, mostly in terms of just 00:02:57 whether it was living under this administration, or way before that. 00:03:05 So, like, I think disabled folks, sick folks, immuno-compromised folks have always had these kind of survival… wisdom and resources and know-how, like, since the beginning of time, so it’s—in many ways, it’s our time. In a very ironic way? But also just, hopefully, a really—it’s also a very scary time, because as we’ve seen in these times of crisis or times of emergencies, where all the bigotry jumps out, right? Everybody’s—we see so much racism and just, you know, ableism, ageism and just, you know, straight up xenophobia as well. So like, this is also a very, I think, very crystallizing time where we really see our place within this larger society and our relationship to the state. 00:04:12 Because, clearly we are not a priority as a marginalized group, and clearly our body-minds are seen as disposable and just… almost thought of as collateral damage under this guise of high risk or vulnerable populations.
00:04:35 Aimi Yeah, absolutely. I’ve been just watching as, you know, we’re confronted with a crisis that disabled people actually have a lot of experience and answers for. And yet, disabled lives are being put in jeopardy in so many ways, including this idea that there are scarce resources that should be diverted from disabled people and chronically ill people, to people who were previously non-disabled and now have the coronavirus. And I wonder what you think about those arguments about scarcity and resources?
00:05:16 Alice Yeah, I mean, you know, I made a reference to a piece by Sam Bagenstos, who’s a professor at the University of Michigan, and he wrote a piece recently, where he just wrote a few lines saying that you know, scarcity is a construct. You know? It’s a result of societal decisions, and I would say that, just to add to that, you know, it’s a result of political decisions. And, you know, clearly when you have marginalized communities that have never had the same political power and access to be part of the decision-making process, this is how we end up in these situations. You know, I think a lot about who’s at the table, when they come to like, all these healthcare systems creating these, you know, protocols and guidelines. 00:06:16 You know, whether you’re a public servant or a doctor or a bioethicist, you know, we’re not really involved in anything 00:06:31, you know, or not—we’re really not represented. So again, this is a—there’s really—there’s a very explicit need to try to have powers that we don’t have. But also on the flip side too, we have so much power as well just in different ways, right? It’s often not valued and not seen. And I think that, slowly, people are seeing the power that we have in terms of just looking at the amazing amount of mutual aid that’s happening on the ground, by disabled people, for disabled people. 00:07:17 That’s been a really beautiful thing to see. Also just a lot of people pushing back against these narratives, whether it’s online through Twitter or just, you know, podcasting. Or just, you know, people speaking out. People writing. People really sharing their stories, which I think is such an important thing to do because there is such an imbalance. There is such a disparity in what is seen and what is shared.
00:07:56 Aimi Yeah, absolutely. Yeah, if disabled people have been doing things like mutual aid for so long, it’s just part of what we do. Leah Lakshmi Piepzna-Samarasinha, in their book Care Work, actually says, you know, “This is like—for some of us, we don’t even have a name for this because it’s just what we do all the time.” And I’ve been thinking about that a lot—these ideas of disabled people helping each other thrive, checking in with each other, and how this is really part of disability culture. And it’s really antithetical to the, sort of, individualist culture that characterizes non-disabled worlds. So, suddenly we have this whole skillset that we’ve been practicing for so long in preparation for something like this, that can then be shared with other people as well.
00:08:55 Alice Yeah, there’s such a generosity and abundance, I think, that’s, you know, something that I’ve seen and experienced as being part of the disability community. That’s—you know, just makes me feel so warm and just—it really keeps me going, knowing that people have my back, I have their back. But, you know, again—this is where, you know, people with often the least are often giving the most. And, you know, what really disturbs me, of course, is you know all of these kind of like, nondisabled, middle-upper class folks just hoarding all the, like, toilet paper, just like, you know, all the food and also just—you know, again, medications, right? Medications that certain disabled people need just to live and yet, you know, certain medications are now in shortage. Ventilators are in shortage. You know, even people with asthma, you know, inhalers are in shortage. That is incredibly harmful and this—part of this individualistic capitalism: “I’m going to get by while I can.” And that ethos is just, you know, it’s really shitty.
00:10:38 Aimi Yeah, absolutely. I think a lot about how, in disability community, one of the ways that we care for each other is by really, like, checking in and listening to what we need in order to be able to be present. And so like, you know, for me, as somebody who has a lot of chemical sensitivities and chemical injuries and asthma, I’m pretty accustomed to being like, “I can’t be around you if you’re wearing essential oils or fragrances.” And also being able to trust my disabled comrades that, you know, they’re going to take that seriously and create access together. And what I’m really just like, blown away by right now is that there’s this global effort in some senses to decrease—mitigate risk for vulnerable people by staying home, which is really good. And yet there are still some people who do not do that because there hasn’t been cultivated a sense of collective responsibility yet, for them. 00:11:39 Or they think that they’re the exception. Or that it’s fine if they, you know, go to the park and hang out with their friends in close proximity and it’s not putting anyone in danger. And I think a lot about the #AccessIsLove project that you have been doing with Mia Mingus and Sandy Ho. And just the ideas that if we shift toward thinking about accessibility as an act of love and generosity and hospitality, then we have to decenter our individual and often like selfish desires, right?
00:12:16 Alice Yeah, and I think this is again, if there’s one small silver lining to come out of this pandemic, especially for non-disabled people, it’s this notion of interdependence. Which is a—first of all, within disability justice, it’s the fact that, you know, you’re not individual islands silos. And I really hope that—you know, as more—I mean, this is another thing that really bothers me, this pet peeve of mine is that, suddenly when younger people get sick, it matters. When it’s younger, “healthy” people… suddenly they’re the ones being hospitalized. Oh, like—"Oh now we’ve got to take this seriously.” And again, this is just another example of who is centered and who is valued in our society. 00:13:15 And this emphasis on young, healthy, non-disabled people as the people that need to be protected first—at the cost of older adults and disabled people who are—just because we are a high risk, suddenly we are obligated to bear the brunt of it. I mean, I think it was a lieutenant-governor or someone in Texas talking about like, “Oh grandparents are willing to sacrifice for the next generation.” I’m just like, you just volunteered that, kind of… very eugenic and ageist assumption that older people are just going to be more than willing to sacrifice their lives for their grandchildren. 00:14:09 And I think that’s also just incredibly dangerous, especially thinking about this road ahead and the consequences of these, you know, protocols and guidelines… by health systems. Because, yeah, there’s going to be very difficult decisions ahead of us whether it’s, you know… whether we like it or not. But really, what kind of values are going to be reflected in those documents? Because—and practices? And maybe that’s another thing that hopefully people are really, seriously taking some time to consider, even though things are very urgent and there’s probably not that much time for reflection.
00:15:03 Aimi Yeah, totally. Yeah, it feels like it’s really urgent right now to highlight the eugenic logics of those sorts of ideas about sacrifice. And, you know, there—we have so many examples of older folks and disabled folks being characterized as unproductive members of society, or the Nazi phrase was “useless eaters.” And so, it was like, if you’re not contributing then you ought to die so that other people can live. And, you know, we know how that story turned out and its persistence in our world today. And so, it seems especially important to agitate against it and disrupt it anytime it comes up.
00:15:52 Alice Yeah, and I think so much of this is also based on judgements of like our quality of life, you know? I think some of the calculus or, you know criteria is often based on like, prognosis and like how many years do you live with treatment, if you recover, for you know, one person compared to another person. And, you know, obviously if you’re older or disabled, you may not live as long if you have all the access to treatment and interventions. And, you know, somehow, because those pure numbers of, “This person might live seven years versus twenty years,” does that—I mean does that really mean that the person with fewer years shouldn’t have the opportunity to live? I mean, I think sometimes the metrics is just really messed up, where it’s just based on like, longevity, which really isn’t a fair measure, because I think as disabled people and older people are just still people, though 00:17:05; it’s really what you do with your time. It’s really about the quality of the time that you have left. And I think, for myself, personally, you know, I don’t take anything for granted right now. I’ve never—I’ve not taken anything for granted for quite a long time with my progressive disability as I really have become weaker over time, just because of the natural progression. I actually feel like, you know, ironically the most excited, the most, like… I’m really at my peak now! 00:17:47 Even though I’m really—if you look just purely based on paper, I’m at like, the most declined in terms of just, you know, functioning and all those biomedical kind of measures. But like, you know, I feel the most alive right now. And I think that’s something that never is going to appear on a questionnaire or on a protocol. You know, we lose so much of the… the qualitative aspects of what it means to be alive and what it means to want to be alive. I think that’s, you know, something that’s missing, and I think that’s why storytelling is so important to me right now.
00:18:36 Aimi Yeah, absolutely. It seems like all of the stories that you capture through your work with the Disability Visibility Project help to shape exactly the argument that you were just making about the importance of disabled people determining our own value of life. So, in the few minutes that we have left, I wonder if you have any predictions or speculations for the future? Or admonitions, or words of warning?
00:19:13 Alice Well, I think in terms of words of warning… You know, I wrote a piece a week ago and I didn’t really, you know, want to write it. But again, like, should I? 00:19:24 I think, I understand sometimes we feel compelled because of the world around us, and the circumstances around us. But, you know, I think right now, I think at this time and way before this time, you know, disabled people are the— are modern day oracles. You know, we’ve been telling the truth and trying to tell our truth forever. And whether or not people have been listening to us, or not. And if that’s—the one message I would say is that, you know, we have been telling our, you know, real talk about the world. And I feel like this is something that’s so needed right now. 00:20:12 And my hope is that as a lot of non-disabled folks kind of get a small inkling of everything they’ve taken for granted and just that this privilege they’ve had and their loss of—temporary loss of privilege at this point. Or, you know, this kind of temporary inconvenience—that they realize the kind of truth and the power of our truths. So, maybe that’s—that’s what I’ll end with, is that idea that we are the real oracles and, you know, hopefully people will pay attention.
00:21:02 Aimi Yeah, definitely. And I’ll just highlight an amazing piece that you wrote for the journal Catalyst last year as well, in which you speculated on a future in which disabled people survived the apocalypse and had wisdom to offer for looking back. So, thank you so much, Alice. This has been a wonderful conversation. I’m so grateful for you and everything that you do, and I’ll definitely be in touch.
00:21:32 Alice Well thanks for having me on, Aimi. And I think in these times, you know, it’s just like—all we have is each other. So, thank you.
00:21:43 Aimi Yeah. Grateful to be in community with you. Thank you.
00:21:50 Contra* You’ve been listening to Contra*, a podcast about disability, design justice and the life world. Contra* is a production of the Critical Design Lab, learn more about our projects at mapping-access.com, and be sure to follow us on Twitter and Instagram. If you’ve enjoyed this episode, please head over to Apple podcasts to subscribe, rate and leave a review. The Contra* podcast is licensed under a Creative Commons Attribution-Non-Commercial-Share-Alike-International 3.0 license. That means you can remix, repost or recycle any of the content, as long as you cite the original source, aren’t making money, you don’t change the credits, and you share it under the same license.
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