Transcript
Dr Jay Dolmage in conversation with Dr Aimi Hamraie
[Start of recording]
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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.
00:01:29 Aimi This is Aimi Hamraie and I'm thrilled to be here with Jay Dolmage, who is Professor of English at the University of Waterloo and founding editor of the Canadian Journal of Disability Studies. Jay is also the author of a book about disability and eugenics, called Disabled Upon Arrival, as well as the books Academic Ableism and Disability Rhetoric. Welcome, Jay!
00:01:54 Jay Thank you for having me!
00:01:56 Aimi Yeah, it's so great to have you here. I feel like you are someone who I have been in, like, mental conversation with, for a long time, because we also both work on universal design, and we're sort of in similar academic worlds. But, as we were just observing, before the recording started, this is the first time we've had, like, a face-to-face conversation, so I'm really excited to talk to you. So, let's just get right into it. What's your take on what is happening right now with the Coronavirus pandemic and disability?
00:02:34 Jay Sure, so… I think there's a lot of really—there's two things that I see happening at the same time. The first is some really scary things. People are dying, obviously, and I think that there are actually in some cases… eugenic intentions behind some of the policies that are being created. There is also a kind of passive eugenics that's happening, around the ways people value different lives. And, at the same time, there are affordances that are being made for people. So, you know, it's this very strange situation where, like, there's increased access to a lot of things, at the same time as there are these unbelievably scary threats at the same time. 00:03:34 So, I don't know. I don't know exactly how we proceed, except that, like every day, I'm thinking about those threats? And… also sort of—the other trend that I'm sort of seeing is like, people who are in power right now in general, if I can kind of paint with broad strokes, they wanted to be in power for particular types of reasons. They didn't want a crisis like this. They're unbelievably ill-prepared to handle a crisis like this. And they're not looking to the right people for advice about handling a crisis like this. So—and I think, most pointedly, they're not looking to disabled people. They're excluding disabled people from these conversations. And so, there's a lot of lobbying that needs to be done to get the right people into these rooms or into these conversations or phone calls. 00:04:37 I don't think that there is much consideration of equity, period, in most of these conversations. And that's at universities. That's at provincial and state government. That's within hospitals. That's on all levels of decision-making. And so, there is an actual opportunity here. Because these leaders don't want to be—this is not something they're familiar with, or comfortable with, to say, “You need to listen to the right people,” and I'll give one kind of more hopeful example. At least in Canada, there had been some triage protocols that were leaked, most prominently one in Ontario, that really were saying that disabled people would not be taken care of. There also have been cuts to the kinds of assistive supports that are needed for disabled people just to get the care they need on a day-to-day basis. They're not getting support or in-home care. They're not getting translators. 00:05:34 They're not getting all kinds of things. So, in response to the noise that got made around that, there's now an advisory group that's federal, that includes a lot of prominent disability advocates, self-advocates. That's great. The problem is the decisions aren't really getting made on a federal level. They're getting made provincially. But I think having that kind of, like, disabled ombudsperson in every case is so important. Because otherwise, we're going to default to the ways that the healthcare system generally operates, and we know that it's an ableist system. And it would be very efficient in kind of carrying bad ableism out?
00:06:18 Aimi Yeah, great. Thank you so much. So, you have written a book about the history of disability, immigration and eugenics, and I wonder if you could just take us back historically a little bit, and share anything about the history of eugenics and how, you know, eugenics emerged, and what some of the practices were that you think are relevant for analysis in this moment?
00:06:48 Jay Yeah, there's a part of the book that I—I mean, so, in a lot of the historical work around eugenics, or even the ways that eugenics gets taught, for instance, in like a North American history class, it really is treated as something that was—that began in Germany, that was really implemented there and is a kind of artefact of the past. More truthfully, it was begun in North America, became really successful as an idea and a series of laws, and policies, and broad implementation in North America. Nazis based so much of what they did on admiring what Americans were doing with eugenics. Eugenics was this huge research network that was funded and founded by American and Canadian universities. 00:07:44 So, it borrowed that legitimacy from Higher Education, and Higher Education built itself on eugenic research. And that's a long story to tell and that's—you know, the book does that. I'm working on another project now that's called, simply, you know, Academic Eugenics, that does more of that tracing of how—of how woven into the fabric of academic research eugenics was. It was also very, just popular! And the truth is, it's really never gone away. I understand why historians want to believe that it's gone away, because we would all like to believe that. But it transformed and camouflaged itself as a variety of other things. You know, there's a point in the book; people sort of believe that if they're willing to admit that American eugenics really happened, then they isolate it to the mid-part of the 1920s, when we had these anti-immigration laws. But then, we also had anti-miscegenation laws. 00:08:47 And we had—you know, these things sort of spread out. And instead of being based at Ellis Island, a lot of these things began to be based at the American-Mexican border. And, you know, we went from this control in particular locations, like Ellis Island, to this remote control. They picked up the border and sort of laid it down, all across the country. And I think those eugenic ideas still very much structure so much of what we do. And it's upsetting to admit that, and it's not something people want to admit. But it's so important, right now, to name eugenics when we see it. And so—and what we're seeing right now, in, kind of, racism against Asian-Americans; it's what we're seeing right now in some of the newer stories coming out around race and COVID, it's so imbricated 00:09:43 in the healthcare system—the idea of “triage,” and which bodies are valuable. 00:09:50 So, these things are eugenics and then we have to call them that. If tracing those things to historic policies helps, to make that case, then okay. Whatever we need to do to make that case.
00:10:05 Aimi Yeah, absolutely. You're really highlighting for us, too, that we may all have been taught that the hierarchical ordering of life somehow ended with, you know, the end of World War Two, or something like that. But so many in the United States—and I'm sure in Canada too, it's not really a geography I know a lot about—so many eugenic policies continued and even escalated in the aftermath of World War Two and into the present. And, you know, where I live, there are still district attorneys giving, you know, young mothers shorter jail sentences in exchange for sterilization and things like that. That's happening in 2020. So, I'm so glad that you highlight these connections to race especially; to the border; also, to incarcerated people; to racial histories of red-lining. 00:11:01 And something that I really love about your book, and my students always love this when we read your book, is this kind of attention to the spatiality of eugenics, too. And that includes these, like, geographic spaces and also architectural spaces, like the public health sort of processes of vetting people at Ellis Island. And it's been on my mind a lot, as we're social distancing, too. So, I wonder if you have any thoughts about that. Like, how eugenics relies on putting people in particular spaces and what implications that has for the people themselves.
00:11:43 Jay Yeah, absolutely. So, yeah, that's so interesting. I hadn't really made that connection, but it's so present. So, at Ellis Island, they had this thing—and Anne-Emanuelle Birn writes about this—but this thing called the “Six Seconds Physical.” Which was this idea that when you came through the processing there, somebody could look at you and within six seconds, make a decision about what kind of stock—biological stock you were. And that some people were particularly better at that than others. But also, the idea was that once you had been looked at that way; once you had been looked at in that way, you learned how to look at others that way. And I think the physical distancing thing is such a profound drama that gets played out over and over again, of us giving one another six-second physicals, and using this kind of very limited grammar; very limited vocabulary for how we would do that. 00:12:43 Which of course, is necessary to do—to make those kinds of snap judgments. So yeah, I think—I wonder if I could sort of put that challenge to listeners, just to think, how have they kind of taken on that role? Of using that same gaze, that same medical gaze, that might have been used of themselves, right? And using that on other people. You know that people are now looking around and making judgments of their neighbors. About who's—these are sometimes really good, profoundly important judgments about who might be at risk, and how to protect those people from risk. But they're also very much often, like you said, a biological hierarchy of, like, “Where does this person fit on that hierarchy?” And we've never lost that. It's never gone away. But there is something to be said about how profoundly and publicly we're seeing this, now. 00:13:45 And that we have to pause and say, “This is how disabled people have experienced being looked at, for their entire lives.” And, “This is how they have been isolated in geographical spaces, for their entire lives.” And now that puts them at such a—at a much greater risk. A risk that the general public is only beginning to just, kind of, in a much smaller way, understand. And it's like—then, you can't go back. We can't go back. So that if there is some broader shared understanding of how dangerous that kind of way of looking at people is, then we have to understand the fact that some people have lived that way their entire lives.
00:14:31 Aimi Yeah, that's a really important point about institutionalization and who has already been forced to social distance or removed from the public, under this logic of, like, “social contagion,” or something like that? Which is a very eugenicist idea. And I've been talking to a lot of prison abolitionists lately, too, who are kind of making some more arguments about incarcerated people and, you know, really, this question of who is able to even social distance, right now? That relies—like, the ability to choose to do that relies on certain structures of, like, home ownership, or housing access, or voting rights, or perceptions that you are even a citizen. And, simultaneously, I've been reading a bunch of articles about how institutions are places where COVID cases are happening and just kind of being excused, because they're—the life contained in those spaces is already so devalued, or so excluded from the rest of the population. 00:15:42 And, all of those—like, you said something earlier about, kind of, like, intentional versus unintentional forms of eugenics. And it's just so striking to me how, in this moment it's in part because we are socially distanced, but in part because we have been conditioned to not perceive and have access to people who are institutionalized. That like, all of those deaths are erased and really depoliticized. And I was thinking about that especially, when, in Washington state, an early outbreak in the US was in nursing homes. And no-one was talking about what kind of place a nursing home is, and the sorts of violence that happens there, right?
00:16:27 Jay Absolutely. Yeah, and that's so, like—so, if I can kind of, like, place a marker down on a couple of those things, that we have to pay attention to forever. One of those things is the spaces in which, you know, elderly and disabled people have been relegated to, because of defunding. Right? But also because of an industry that thrives and profits. So, those things are happening at the same time. In the province of Ontario, you know, there are—the big case here is in Bobcaygeon, where there is a senior care facility that is just—you know, has been completely decimated. In a very small Northern community. Well, that's because the Premier of Ontario wants to privatize care. Right? And has defunded care. 00:17:26 So—and there is no accountability for these private institutions. And they are profoundly unhealthy places. And we need to go back and look and examine them all. Right? And we need to go back and look at the funding decisions that were made just last Fall. Right? That made it so hard. The truth is it costs less to have home care. That some of my family has been involved in for years, since the deinstitutionalization of the biggest—the big provincial institutions in Ontario. And I work with survivors of those institutions. But it costs less to have home care. Very little! But there's no avenues for doing it because the contracts have been given to these larger healthcare providers. Another piece of that, that's related, you know, now people in Canada—I'm not sure what the programs are in the States, but there's a federal program for people to kind of replace lost wages right now. And you can sign up for it and almost anybody can get two thousand dollars a month. 00:18:28 Well, the Ontario Disability Support Program is capped right around a thousand. So, we need to remember, every single person who cashes one of those two-thousand-dollar checks needs to know: we were telling disabled people their lives were worth half as much, when they needed help. And if they knew all the other red tape around that? That created situations where those people couldn't seek work if they wanted to, because they would invalidate themselves for those supports, or for the healthcare they needed? So, in any case, I think we have to, like, put a marker down on that. And every single person who cashed one of those checks needs to come back around and say, “This can't happen.” Right? Every person who, you know, right now is at home in a safe environment needs to understand that people are now trapped in very unsafe environments. And their family is not allowed to visit them, and they can't leave. And that the workers who work there are walking out, because they're paid so poorly. 00:19:29 A lot of them before this, were having to work at multiple places to make enough money—which is a public health concern. Anyway, so, I think though there are going to be a series of these things where we really need to lay that marker down and say, “This cannot go back to—to this system. We can't go back to this, now we know.”
00:19:51 Aimi Yeah, one hundred per cent. Are there specific projects or efforts that folks who are listening to this or reading the transcript can support to be in solidarity with disabled people?
00:20:11 Jay Sure. So—and one thing maybe I could put up a couple of the links, when we circulate it—but one thing, just in Canada, would be Arch Disability Law. They're the folks who are going to stop some of these things from happening. Because when these protocols—for example, the triage protocols—come through officially, there are ways to stop them through the courts. And rapid action will be required to do that. We still have a judicial system. So, to me, that is one of the biggest things we can do: is fund the folks who will bring these cases. And in Canada, Arch—it’s just A-R-C-H—Disability Law, they've been involved for a long time. They're not like, a perfect organization or anything like that, but they are the lawyers who are going to do this. And there aren't a lot of lawyers who will. 00:21:09 And so, maybe I can think and look for some similar—or you could help me find some similar venues in the States? Because I think that that's going to be the mechanism through which in the short term, we stop some of these things from happening. Because I think right now, in terms of visibility and the arguments that need to be made, people are doing a very good job. And one of the best things I can say is, if you have the spoons for it, re-circulating the information right now is really important.
00:21:43 Aimi Yeah, it is interesting how these disability law organizations are really at the frontlines of this, right now. And another sort of… space or set of tactics that I've been talking to folks a lot in these episodes that I'm recording is mutual aid, which is a more grassroots sort of effort. And disabled people are leading that, in many places. Are there any mutual aid projects that—
00:22:11 Jay Yes.
00:22:12 Aimi —you are involved with, or driving inspiration from right now?
00:22:17 Jay So, some of that stuff is being organized in Canada and Ontario, because the—even the kind of federal aid that's getting out is so slow to get out. And so, I would look to—so, I would look to organizations, local organizations, SSAHs, which are Special Services at Home agencies. Community living. Sometimes they're called “Extend-A-Family”. These are—but I think, organizations for community living are the places that support people to live on their own. They also support some things like group homes and places like that. And that's where I think, a lot of support is needed. So, looking to your local ACL, Association for Community Living, CACL is the Canadian body, but there's one—like, I guess I'm speaking only to Canadians right now, but there's one in your neighborhood. 00:23:18 And, so, being able to help and support them is one way to get—to get resources to people who need them, more quickly than the government will. The government does not care, right now, about disabled people. They're getting this money to middle-class taxpayers first. And those people are almost all going to pay the money back in taxes. So, it's an unbelievably inefficient way to get resources to people who need them now. So—I think my dog's just about to come up, she's trying to sit right beside me. I think your point is a really important one, that mutual aid is really important right now. We can't rely on State or federal governments to do this, yeah.
00:24:00 Aimi Awesome, thank you. Any final points that you want to impress on our audience? Your dog is very cute, by the way.
00:24:10 Jay She finds the most comfortable place to sit, wherever she goes! She's an expert. So, yeah. Well, I think one—the main thing that I would say, is what I've already said and sometimes it's worth repeating. But calling these things “eugenics,” when we see them. The truth? There will be a lot of apologies. Right? There will be a lot of people saying, “No, that's not what I'm trying to do,” that, “No, that's not what I'm trying to say. I'm just trying to explore this scenario,” or, “I'm just trying to talk this through,” or, “Think this through.” And that's really—that's how eugenics works. Eugenics is really most powerful as an idea. And it's really contagious as an idea. Especially for temporarily able-bodied people, because it says, “You're going to be fine.” And that there are other people that you can array around you as a kind of force field. And that is just tremendously dangerous, and wrong. Ethically wrong, scientifically and medically wrong. And we really are all in this together. And so, that's the biggest piece for me—is stopping eugenics even as an idea. And calling it that is really very important. There's, like, rhetorical work to be done and ideological work to be done. Just as much as there is work to be done that's really tangible and material, and legal, and political.
00:25:44 Aimi Thank you so much for that call to action, Jay! This is a perfect place for us to wrap up. Thanks for talking to us! It's been great.
00:25:52 Jay Thank you very much for having me! Yep.
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