Transcript
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.
00:00:33 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 health care 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 Hi, this is Aimi Hamraie, and I’m here with Sulaiman Khan, who is an independent consultant, speaker, and writer, and founder in chief of the disability consultancy, This Ability. Welcome Sulaiman. Sulaiman, what’s your take on Coronavirus and disability?
00:01:49 Sulaiman The virus itself is not scary. It’s the ableism and people’s attitudes that is even worse, because here in the UK, what has happened in the past week is that they’ve passed legislation, a Coronavirus legislation. And with that it also made it easier to not help disabled people, basically, and try to loosen up the categorizations. And basically, there’s a whole heap of guidelines for the NHS. So basically, disabled people are the ones that are most likely going to die, and it gives the NHS the right to decide that. We can do some third [inaudible] and just then, like, you know people might not be allowed ventilators, if they’re disabled, and that’s all, quite rightly—so, there’s quite a lot of concern amongst the disabled community in the UK and now in North America—in America, as well. There’s a lot of issues around how people are being treated and—as well, and…. 00:02:53 I think also just the fact that most people, for the first time in their lives, are just getting a slight glimpse of what it’s like to be disabled in this environment. And it’s like, “Oh yeah, we understand now.” They had no clue. And in the UK there’s a conversation, which is quite funny, last week, that said, “Oh you can’t live on ninety four pounds a week?” Well, in the UK specifically, we’ve been forced to live on less than that, you know, for ages. And we’re not allowed to save money, because then they take that away from our care packages, and things like that and that’s been challenging as well. So it’s been quite a—an emotional rollercoaster, but I think what’s really helped is like, the disabled community, people—amazing people like yourself, and others in the disabled community—that drives this really incredible supportive community, so that’s really helped, to have people to talk to and to engage with, to social media and things.
00:03:55 Aimi Yeah. For sure. I just want to highlight a few of the things that you pointed out, that I think are not as obvious to non-disabled people. That, even though in this case, all these people are becoming disabled in certain ways, ableism is persistent. There is still the devaluation of disabled people through these kind of things where medical systems get to decide who survives and who gets care. And then also, that disabled people really have been providing support for each other for a really long time, and we know how to do that because we have been doing that all along. And so, our preparedness in this moment, at least in terms of community and care, is very different than what a lot of non-disabled people are facing and doing. For example, we engage in a lot of mutual aid. And we have our own protocols and scripts that we already follow around remote access.
00:04:55 Sulaiman Absolutely. I think that’s, you know, hitting the nail on the head—that disabled people are very resilient. They know how to include, they know how to look after each other. Disabled people are really good at like creating and building resilience, and even when that is the case, even in this whole pandemic crisis around the world, non-disabled people are still not including us in the conversation. And like, this is what I do, there’s all these things that are, “How to organise a digital workplace,” “How to do this,” and all of these online livestream conferences and, like, remote working. And even though non-disabled people say it much better than I will, but you know, we’ve asked for that, but you were like, “No, you can’t do that, you can’t do that.” 00:05:43 And now everything is possible. And yet, you know, I think—it literally, I think—you were saying, how we value ourselves, and how we value disabled people. Because disability is like the world’s largest minority. It’s a diverse, incredible global family, yet the way we’re treated on a day to day basis—and even more so in this whole crisis—I think it sort of reflects quite badly on society.
00:06:14 Aimi Yeah, absolutely. So if society were to listen to disabled people and to learn from our resilience and our strategies, what specific things do you think would be transferred in that? Or what would people start doing differently?
00:06:36 Sulaiman They would have a dark sense of humour, to start with. They would just chill out, I think, they wouldn’t be so stressed and so intolerant and so hateful, that would be the first thing, I think. But again, I do—I can’t speak for all disabled people, I think, you know, just like anybody, disabled people can be complete assholes as well. I don’t think by being disabled, we’re there to inspire the whole world. I don’t think that’s the case. I do think the world has a lot to learn, in terms of our resilience, in terms of our creativity, in terms of even how we’re able just to be really a good problem solvers. And, you know, a lot of disabled history… you know, that society is benefitting from is not known, even amongst the disabled community, because we’re kind of pushed to the side and not allowed to even have our own narratives. So I think that would be a huge benefit to the world and to society, just to include us and listen to us. 00:07:40 And you know, just engage with us as people, rather than objects of, you know, inspiration or objects to just be put on the cover, or just to be looked at. I don’t have time for that narrative, anymore. Because my own experience of disability is kind of an up and down story. So, I have a condition called muscular dystrophy. It’s a progressive muscle wasting condition, so as I get older my muscles get weaker. And for the first ten years of my life, here in London, I had to go to a special school, and always in every single day, it’s in lesser environments, I didn’t actually learn to read and write until I moved to America when I was ten. And very quickly, even though I was in special education, they put me into mainstream schools and in mainstream classes. And the whole time that I was in America, because I had such a negative experience of disability for about the first ten years, I totally rejected disability and disabled people, just because I was quite fearful of it. And then when I moved back to London in 2006, I completely embraced it and I’m so glad I did. You know, I met great people like you, I met great, other incredible people, you know, like Liz Jackson and Alice Wong, and so many other—Rosemary Frazer—lots of other different, incredible disabled people around the world. And I think, you know, that’s—something that needs to change is, you know, this hierarchy that we have within the disabled community. And we need to stand up and support each other against the world and a society that really doesn’t want us to be united, and really doesn’t want us to live or even succeed. And I don’t really have time for that narrative anymore, really.
00:09:34 Aimi Yeah, for sure. So have you been having any experiences during this coronavirus pandemic that have changed something about your life or the ways that you interact with other people or access to resources?
00:09:52 Sulaiman My resources are getting harder and harder to get, in terms of PPE, personal protective equipment. That has been challenging for me to get personally, for my carers and things, and what’s kind of changed is the kind of, you know, more emphasis and prioritising on my health, in terms of things like hiding and how important it is for my health and things like, you know, making sure I don’t go out and am good to my health 00:10:21. And that’s really hard. The last year or two I’ve kind of changed in that anyway. I was just not going out as much as I used to, just because of my deteriorating condition. And actually, just because I work from home some days, doesn’t make me less valuable or less worthy of anything. And the whole idea of being, you know, productive, only if you’re busy and on the hustle every day, I think that needs to change and we need to value people as people. 00:10:49 And just because, for example, just because I’m laying down and talking to you, you know, on the internet, doesn’t mean make me less valuable or less productive. It means that I am able to do work in a way that works for me. And I think, in society, and disabled people need to recognize that, actually—what is the best way how you work and how you live, and just support people to do that, really.
00:11:12 Aimi Definitely. So like, you know, before the pandemic, all sorts of work over the internet was severely devalued or didn’t count. And in some cases, it still does not count. Like some people are being forced to go to work now, and told that they can’t work remotely. And I wonder if you think that that is going to change through the way that work has to be online now. If the pandemic ends, will people—as by default, appreciate online work and remote work more? Or will they have a different kind of perspective? What do you think is going to happen?
00:11:58 Sulaiman I’m kind of optimistic. I would hope that, you know, people actually start to see the benefits for people, you know, to actually engage. So for example, somebody like me who physically gets very tired, to sit a long day in the wheelchair, which I can’t do anyway. If I had the opportunity, for example, to livestream a conference and get paid to do that, I could travel anywhere in the world. So that would open up huge potential personally to me and other disabled people. But what I do think is, unfortunately I don’t think anything is going to change. Because seeing something like, you know, people saying online and stuff, “Oh, I can’t wait for things to get back to normal. Once it gets back to normal, it will be okay.” But normality is what started this whole thing in the first place. 00:12:47 People acting like—you know, not valuing everybody, not treating people like people. Particularly in disability and design, I think, it’s something that we don’t recognize. The importance of technology as a tool to really empower disabled people to live freely and independently. It’s just really is hard to explain how much independence it gives you. We’re so un-independent as it is, and dependent on people and things that, you know, are not our fault. And so I think—I really hope things will change. But even, I’m quite sceptical in terms of how people are reacting. You know, and I think we have to change that mindset of even, as I said earlier, constantly working and constantly having to prove that we’re being productive and I think that’s part of the issue. Even in this time, during the whole crisis, people still want to write, like three hundred books in, like, a week. They’re like “I’ve come up with a great idea.” 00:13:51 Like, no, no no. They need to rest, recover, and recharge. You can’t, you know, you can’t always be like that. 00:13:58 For disabled people, in particular, I think this is a time for us to all unite together and actually, you know, say, “Actually this is what we can offer the world and we need to be, valued and respected as such.”
00:14:13 Aimi You brought up technology and dependence, and slowing down and not being so productive all the time. So, are you finding ways that disabled people are using technology not to be productive but to do other stuff, in general or right now during this pandemic, that are interesting?
00:14:35 Sulaiman I don’t know, I think that for me I’ve been finding—I can only speak from my own lived experience. So, the thing about me is that even though my muscles are, like, getting weaker as I get older, my brain is like three hundred miles an hour. And so I always want to go, go, go and do like ten things at once. And technology has always been a huge—I actually have quite a love/hate relationship with technology, because of like—yes, it makes you independent, but even right now I’m laying on a massive air mattress, which is a huge piece of technology. Even to go out I have to get into a power wheelchair, which is again, a huge technology so I can’t disconnect and be by myself. And at night I have a ventilator, and things like that. So, it’s this—that idea of like, actually disconnecting from technology is not really possible for me, or many disabled people. What I do like to do using technology for my enjoyment, like I like a lot of podcasts and audio books and things like Kindle, as well. You know, I read a lot of e-books. So that—so, I’m kind of trying to do that a bit more than I used to, in terms of using my creativity and my time in positive ways rather than using technology just to hinder me and stuff.
00:15:54 Aimi It’s interesting what you said about how disconnecting from technology is also not an option. That even though technology has—enables important things or is important for life, some people have, like, the privileges of being able to disconnect from it, and also, many people are characterized as excessively dependent. And so disability culture has been pushing back against that and saying, it’s okay to be dependent on technology. And right now I think a lot about all the people who are suddenly experiencing things like having migraines from being on the computer all day—like these things that, for some of us, are part of everyday life and there are these ableist expectations of culture that we’re constantly available, that we’re always checking our email, et cetera. And now that that is happening with so many people, there are these tensions and frictions over what happens if you say no to using a certain kind of technology or you set a boundary around how you use technology in the workplace or in other types of spaces.
00:17:03 Sulaiman And I think that’s very—that is such a great point, is that for disabled people, it is not possible for us to have, like, you know, a digital detox or technology detox. Because it’s almost our safety-net; it’s a luxury for anybody to completely disconnect. As I said, for me, if I want to go out into nature, I have to get someone to get me my wheelchair, my power wheelchair, and then get someone to drive me, and I can’t really be completely by myself, either. So again, how do I disconnect and create that headspace that I need. And so, technology is a tool, I think it’s also a safety net. I think, as you said, like, for example, checking emails, and then to have to check emails, like, three hundred times a day. It’s not because I want to, and I think that’s to do with the sense of isolation that disability brings to all of us and also internalized ableism as well. I think that has a lot to do with it in terms of, you know, how I feel about myself and how I feel about people—feeling valued in the world. I’m learning to get better at that, but I think that this takes time.
00:18:13 Aimi I really appreciated when we were corresponding before this call—in your email signature, you actually have a section. You know, after you have your gender pronouns and disability pronouns, you have this section that says, you know, here’s how long it’s going to take me to respond to your email and here’s why. And I thought it was such a good example of setting boundaries around technology and people’s—managing people’s expectations of it. I think a lot of people could adopt that as a practice. Something that I was doing before the pandemic was, with my personal email, I always had a vacation message on it that said, I’m trying to decrease my use of email so I’m probably not going to respond. And people really appreciated that. And if they knew me personally, they got in touch in other ways if it was important. And it really reduced the amount of interaction I had to have with email, which was triggering for me in a lot of ways. And so I really—I wanted to tell you how much I appreciated the model that you provided.
00:19:17 Sulaiman And that was, basically—I forgot where I saw it—I think it was through Mia Mingus, I believe? So it was just something I always think about. You know, for me, typing is so fatiguing, so—and I hate not responding to people. And it’s not that I don’t want to; it’s that physically I can’t. It takes me longer. It’s much easier for me, because of my disability, to talk than to type. So, for me, I was like, actually, I need to let people know it’s okay, you know, if I’m not responding to you. I see you.
00:19:51 Aimi Yeah. Are there any other things that you want non-disabled people to know right now, as we are going through this pandemic—about disability or anything else?
00:20:05 Sulaiman I don’t know where to start, that’s a really great question. Basically, I think one thing that I love, I love, I love, is that my great friend Rosemary Frazer, she is a disability rights activist for the last twenty-five years in the UK. She’s from Northern Ireland, and she’s hilarious. And she does a lot of disability rights campaigning in the UK. She was one of the people writing on disability legislation here in the UK in the nineties. She protested, and all kinds of awesome stuff. And she has a great quote that I love, love, love. She says, “Don’t be a disability pimp.” And I love that, because it kind of says, you know, “Don’t be a disability pimp.” I think that kind of says everything, you know, for non-disabled people. Don’t use us, don’t—you know, just hire us, engage with us, and just treat us like people. I think for me that’s the most important thing. And don’t expect us, you know, every single thing. 00:21:03 You know, we’re not here to inspire you, we’re not here to show you everything, or make you feel better about your lives. We’re just trying to, you know, survive. And we don’t want to survive, we want to thrive. [chuckles] So, it’s trying to change those narratives for ourselves. And, just, you know, I think non-disabled people, just need to know how to be much better, authentic allies and give us the space to tell our own stories and to be our own people, in whatever capacity that is, and however we want to live, or how we want to be. I think, it’s so important for all of us. And in particular for disabled communities, I think, you know, don’t expect us, you know, to tell you everything about disability. So I get asked all the time about like, “Can you tell me about blind people or deaf people?” I said, “No. I have no lived experience of that.” If you want to, I can connect you to some great people. So I think, you know, I think we’re not—if you’re in an organization I think it’s important for us not to be the sole representation of one point three billion people across the world, with different types of disability, I think. You know, like, anybody, you wouldn’t go up to them and just ask someone, “Tell me about your entire race or your gender.” It just wouldn’t work like that. So I think disability is still one of those things. It’s very complex, and it’s not a good thing or a bad thing, but it just—we need to just start treating people as people and respecting them, really.
00:22:41 Aimi Well, thank you so much Sulaiman. It was really awesome to talk to you and to learn more about your perspective.
00:22:48 OUTRO You’ve been listening to Contra*, a podcast about disability, design justice, and the lifeworld. 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 like 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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