Disability Talks: A conversation with Rachel Gray

I wanted to try something different this month and bring you a piece of joy in the form of a conversation with my friend, Rachel Gray. Rachel is a wonderful multimedia artist and writer as well as the artistic director of BEING Studio, an organisation that supports artists with developmental disabilities who are working in visual art and creative writing.

Audio:

Links

You can find out more about Rachel’s artistic portfolio on her website, www.rachelelizabethgray.com, her Instagram @halfhacoffee, and listen to SPEAK, the podcast she co-produces for BEING Studio that centres the stories and voices of artists with disabilities on the podcast’s website, www.beinghome.ca/speak.

You can find Aimi Hamraie and Kelly Fritsch’s open access paper here: Crip Technoscience Manifesto

Transcript

Hello, everyone, it's Elaina Gauthier-Mamaril, the voice behind the experiments and philosophy block. For this month's entry, I wanted to try something new and post a conversation I had with my dear friend Rachel Gray about Aimi Hamraie and Kelly Fritsch's 2019 paper "Crip Technoscience Manifesto" and how our relationship to disability has evolved over the years. Rachel and I have been friends for over 15 years, and, as a result, this is more of a captured conversation than a formal interview. It may also be useful to note that, although we draw on the similarities in our experience, Rachel is neuroatypical and I live in an episodic disability. Without further ado, I hope you enjoy my conversation with Rachel grey.

Elaina Gauthier-Mamaril: Hello, my name is Elena Gauthier-Mamaril. And I'm here today with my friend Rachel Gray. And I want to discuss the crip technoscience manifesto paper with Rachel, because I've been coming into disability studies and crip theory recently, but I've been living with a chronic illness for many years. And Rachel and I have had multiple discussions around disability and what it's like to be disabled. And I just really wanted to capture our conversation together.

Rachel Gray: I guess my background and approach in this paper is that I was diagnosed with dyslexia at a really young age. And so disability was a really big part of my identity growing up and a huge part of the way I experienced the school system. And then there's a whole period of my life after I graduated from post secondary education where I kind of just stopped thinking about these things or is like a weight was lifted, because it didn't seem to apply to my life in the way that it had previously. But I've been working at a studio space called being studio, which is a community for artists with developmental disabilities. So through that I became more engaged with conversations around Disability Justice, and kind of through my position in that community, I started reevaluating some of my thought processes around my identity as being disabled or having a disability. So I'm kind of still in a process of figuring out I guess what that identity means to me. And then how, how it influences how I relate to to these topics like Disability Justice.

E: Yeah, so basically, we we have a lot of lived experience, but we're relatively new to thinking about it in these terms for sure. So we are not approaching this text as as experts, but we are in a way, but maybe not as academic experts on disability studies. And just to give a bit of context, the crip technology manifesto addresses the relationship of technology and science in relation to disabled people, and specifically addresses it not in opposition, but in contrast with maybe more mainstream liberal disability studies, and with certain kinds of feminism, as well. So it's not just discussing disability studies versus abled bodied discourse, but within disability studies discourse itself. And so I thought I would just start with the four core commitments of the author's place in the paper, and we can jump off from there and discuss. So the first commitment is that crip technoscience centres the work of disabled people as knowers and makers and basically the the authors are arguing that people with disabilities are designing in their everyday life, they have to adapt to their environment, or to the social situations in which they engage. And so, although they may not be designers professionally, they employ design ideas in the way they approach the world. So Rachel, is there anything that makes you think of in your own experience?

R: I think one of my major questions from this section was a lot of the examples are based in physical interventions. So people building on wheelchairs are adapting, you know, devices that exist to make them work better for their bodies. And it made me curious about like learning disability or cognitive disability, where the differences that you're addressing, they're internal, they're not as visible and the tools that you use to manipulate your environment are also intangible. And I'm curious about what happens when the intervention is invisible, like even to you.

E: Yeah, that's a really good point. And on rereading this paper had really struck me how much 95% of the examples are all have physical disabilities, and they briefly discuss people with autism, or people with the like dyslexia, things like that, like neuroatypicalities, but the focus of the paper is very much like look at these people who've learned how to build and adjust their wheelchairs, or who have resisted waiting for government structures to make sidewalks accessible by smashing the sidewalks are by bringing their own ramps with them. So that is a very material in the fence way to approach what they call hacking and designing. And I understand why you would do that for the sake of the argument. But do you have an example of ways that you've hacked things that aren't material?

R: Yeah, see, that's the thing is, is I what I find is that the tools that you're using what you You certainly do develop, because they are not external to you, and they don't have an audience, it's very hard to remember that they exist, like at a certain point, they become an extension of thought, they just become part of the way that you navigate and the energy effort, the even the existence of them becomes invisible, even to me. So I can think of certain strategies and a lot of the stuff from when I was learning how to read originally, that stuff is more tangible, you know, that stuff is like, I don't know how much of this actually helped. But it's things like tracing letters and shaving cream or feeling like sandpaper letters, or, you know, just tonnes and tonnes of flashcard exercises, or, you know, a physical intervention, like a card with a window in it, that you drag over the text to keep your eyes on a steady line. So things like that are are tactile, and you can also see the effort that goes into them.

But that I think, was one thing that contributed to, to me having the sensation that my disability had gone away, or also wasn't real, which is something that I encountered a lot in my education was just this kind of constant burden to prove the reality of that experience. And then I had this sort of personal experience of being like, wait, none of this is as hard as it used to be, like, I can't seem to be able to navigate environments without asking for interventions. And so is that was that real, like what happened and I think that kind of the perspective being only yours and only in, in your mind can really contribute to this sensation of, of unreality. So I think a lot of the ways that I operate now, it's just it's so much part of my experience that I have a hard time detangling it or comparing it to the way that other people might approach?

E: Yeah, that's really interesting. Because in a way, even though our disabilities stem from different places, we both share this experience of having invisible or non apparent disability. So our history and our narrative is very much informed with a lot of disbelief. And in a way, gaslighting of people like well, you don't really feel bad. That's not that's not really real. And that also makes you believe that Well, okay, well, if I'm having a better time now, it must just be because I've kind of overcome that part of myself. And but as you say, you've just gradually adapted and you've developed coping mechanisms and ways to navigate things, but because you don't have to ask for help. You're just like, "Well, okay, I must just have adapted and it's fine". Something that came up in the text, it was just, it appeared once. But it was the mention of crip time. And I've been recently reading more about crip time and the idea of when your body or your mind doesn't follow the chronology of what's expected.

So one example is with developmental disabilities, even just in that title of the idea of developmental, it's like, well, at this age, you're supposed to be doing this. But so if you're not, then you're asynchronous. And the idea in the example in the paper is this person going to the hospital for their cancer treatments, and kind of refusing to pay the exorbitant parking fees, because they're like, "Well, I'm not going here for entertainment, I should be able to park here for as long as my treatment is required". So you're kind of imposing a tax on the fact that my time oversteps what you believe is a reasonable amount of time to park your car. So I kind of relate to hacking in that sense of like, most of my hacking is negotiating how to fit my trip time being like, "Okay, if I have a four hour shift, and my job this afternoon, I have to rest for X number of hours to be able to show up" or like, "today, if I cook myself lunch, I won't have the energy to shower", or you kind of have to do these trade offs. And there are trade offs that only make sense to me. And even for me, I can't really even compare to what happened yesterday. So yes, you do gain experience in that way. But the experience you gain is being able to adapt in real time to their priorities of that day. And so yeah, that's it like, I'm not a wheelchair user. So I don't have to learn how to build the wheelchair adapt existing models to myself, but I kind of need to adapt time. That make sense?

R: Hmm, yeah, yeah, absolutely. The most, I think that the examples that are clear, to me are things from when I was in an education system, because the other side of this is what kind of environment you are in and how rigid it is. So my current work environment is, it's like a culture of flexibility. So that makes it easier for me to operate. But things like memorising names for a test, like I would do in university, that that was something first of all I would avoid, so I could take a class where you didn't have to do that, I would do that. But I do remember things like, especially if the names aren't, like names I'm already familiar with. Like, I just, I can't remember them. So what I would do is split the word into syllables. And then I build a narrative around each syllable. So the syllable becomes like a figure in a story, or an exclamation that that's bigger than makes and you walk yourself through the story. And then you go back and put each syllable in. And I would have to do that for like, 30 words.

E: So it's like creating 30 sort of absurd stories in order to kind of work your way through very elaborate mnemonic device extremely, extremely elaborate.

R: Yeah. And it's really not sustainable, which is, you know why I didn't take many classes where you had to do that. But I guess that would be an example. So I would look for ways to turn things into stories. I guess another thing that has really happened is that technology has just evolved in so many ways to make my life so much easier than it was originally. You know, like the the word processing makes things so much easier. The thing that I'm really interested in now is like, I think that originally, at any time, I'm typing text, like I'm translating from auditory to written. So I'll speak out loud as I type, and then I like, go back and read and then I speak out loud. And that process has collapsed more and more with time. So I don't need to read as much out loud, I don't need to say as much out loud, I can kind of mumble under my breath. So it's easier to type in my face than it used to be.

But something that I've become more interested in is the capacity of new technologies. And I think also an interest in certain groups in flexibility to allow me to communicate in different ways. So I'm just starting to experiment with submitting like auditory cover letters as opposed to written ones. And like that is so interesting to me. I'm like very early on in this process, but a way in which I can use my audio recorder, I can access language in the way where I'm speaking and as I'm speaking, new ideas are coming out and like pouring out of my mouth. And it's like combining with energy and tone. And it's I can take that kind of conversational aspect that's unique to speech. Maybe it's not unique to verbal speech, I can take that kind of talking version, and I can also work on what are some really good lines and then I can listen into it. And then I can clarify I can rerecord. But it's like opening up this path to a kind of communication that I've never engaged in before, which is the medium that I like, maybe not the absolute most. But in terms of like, expressing myself, for the purposes of something like a cover letter and that kind of representation, I can, yeah, bring, bring the speech part bring a sort of like more reflective quality, because I think that's the advantage that text has is that you, you can go back to it, you edit, but with recorded technology, and like audio editing, which I'm just learning about speech can have that capacity as well. So I guess this is not so much an example of internal manipulations that I'm doing like, under the surface to succeed in any kind of environment.

But I've become more interested in asking for an intervention, and then looking at what kind of path might open up from that request, which is very exciting to me, because, yeah, it is it's very generative, right, you know

E: It is so exciting! And it's interesting, because another point in the paper is this idea of access us friction. And this idea of disabled people want to and sometimes have to engage with, like certain technologies and the importance of having that, but then, you know, you have to come full circle, and what you've just told me, you had to had like a very structured kind of learning experience. And then you kind of walked away from that being like, okay, I've learned enough, and then you've realised, okay, but I could improve how I engage in my job and engage in my life by doing the shifts and using technology that is available, but maybe using it in a way that is not mainstream or is not advocated for, in general, and what you're discussing with the audio cover letters, I find really fascinating, because it's kind of merging the benefits of an interview, and a written statement together. And as someone who would much rather have any kind of oral exam versus any kind of written when you're put on the spot, and that specific instance of like stress, being able to access them verbally, I think, is really interesting. And I've recently discovered blind TikTok and it's just been immensely enjoyable. But also, how does a blind person like read texts was like, well, it's text to voice and like, like, it'll read it to you and others that change your entire approach to using technology. But also, this particular content creator was saying that she would rather send her friends and family members voice memos. Like she can, she has, like, the appropriate technology to be able to type. But it's kind of this idea of like, well, I'll just use voice memos. And then both of us are cited. But we have our individual reasons for a while, like sometimes, we've created environments, specially professional environments, like you're talking about cover letters, I assume for jobs or grants and residencies, as an artist and in the professional environment has to be, you have to be able to communicate in writing, and how that is a barrier for a lot of people. Or at least like, you know, we've both gone to structured like, education, we've both gone to university, so we can do it. But it's just because you can just because you can assimilate. Doesn't mean that's the best thing for us.

R: Yeah, yeah, absolutely. And I think that's the most exciting thing that has been emerging for me recently. Because I think as I was navigating education systems as a kid, anytime you ask for help, or actually maybe this is especially relevant while I was in university, because I would ask for some kind of adaptation, like maybe an extension on a paper, or don't count spelling for like an in class exam, something like that. And it's such a pitch, you know, so you're like, pitching yourself and like, how genuine you are and how you're really, you know, you're a student who cares, you know, and, and it's interesting that I understand why you think this gives me a special advantage that would be so unfair to everybody else, because it's not uniform. But here, listen to my counter arguments. And, and then if they say, yes, they've done you this enormous favour and so you're like, you know, you have to then really be like, thank you, you know, and I always felt like this pressure to be so visibly grateful, and then to be like, so good.

So because basically, if asking for help, that's bad. So if you can avoid doing it and really like the idea, even when I was granted help, it's like, we'll give you help now. So that way you can develop to a point when you will no longer need to ask for it and I think I still had an idea that

Like at the very least asking for some kind of intervention and a system, some kind of exception or adaptation that was for me, but it's not like it is not just for me. That's the thing that's really this big revelation like, because if we can normalise other forms of communication, if you can get an adaptation like that, like it just opens up more space, it opens up space for new kinds of things to exist new voices to enter, that path might be more comfortable for somebody else. And so it's not selfish. Like, that's how it was always presented as selfish, or I feel like there's another word for it, too...

E: It's just being "difficult". And I think that's also gendered because we're both women of being like, having to bother people to adapt to you. Especially I don't know, I won't speak for you. But like, for me, as a young woman, it always seemed like something I have to apologise for, which is for like, "Oh, well, everyone else seems to be doing fine. So I'm asking for special treatment."

R: And then there's also this idea that, you know, you're in this protected world in education. So I get this constantly, while I was in high school, that's like, well, "We'll give you these adaptations now. But just so you know, when you go out into the world, this is not going to be there anymore. And we need to prepare you for that." And then also this idea to that, like I, I really got the impression that I was some, like, I wasn't as good as other students, which is why I wouldn't do as well. And I was asking for special treatment so that I could do better. But if I ever did, well, it was because someone else had granted me permission, you know what I mean? Like, and if I, if I was a regular person who was given those things, I would do even better. So it really made me value my way of thinking and approaching things. Because it did feel to me like, well, it is easier for other people. And if they did get extra time, they probably would do better on the test than me.

E: It also positions asking for accommodations as a zero sum game. Because, as you were saying before, like it's not necessarily just for me. And it's not only for other disabled people, but like, let's look at what remote working has done during the COVID pandemic. And suddenly, people are like, "Oh, actually being flexible kind of benefits a lot of people". And this is something that disabled people have been asking for for years, but now able bodied people were forced to enter it. And you're just like, "Well, if I'm asking for something for me, it could be an indication that we could improve upon what's the norm".

R: Absolutely. And also, if you make space for more diverse forms of expression to be recognised as valuable, it diversifies your vocabulary. You know, like, it just seems there's an obvious gain there. But what I would come across over and over and over again, is this idea that justice comes from uniformity. Yeah, you know, like, so if you ask for anything different than you are disrupting justice. And it's, you've taken out part the fairness of the entire system.

E: And related to that, if you are seen, as someone who is living an injustice, because you are living a disabled life, then the best way to correct that is to make you as close to everyone else as possible, so that they don't need to change. But you have to work really, really hard so that no one will notice. And it's this idea, while you were talking about kind of being trained with the idea of like, well, this is all to prepare you for the real world and made me think of my experience with diagnosis. And in a way, I still believe I'm really lucky because my doctor diagnosed me with chronic fatigue syndrome and really believed in it. And so at least from her, I did face a lot of disbelief and gaslighting I have from other medical professionals, but like I was very lucky that my main by primary caregiver like believed in me and my experience, however, because once you have a diagnosis, there's not much you can do. Like there's no cure. And at that moment her reaction to try and comfort me was to be like, "Well, you know, it might go away. And you know, it might go away". And then for the first like maybe even couple of years after my diagnosis or just kind of like okay, well, it's bad now, but it might go away. And then eventually you realise that That's no way to live. You can't just like live your life being like, well, maybe one day I won't be disabled anymore. You're just like, how do I learn to adapt to that and then how do I relate to my disability in a way that is not actively self destructive.

Yeah, yeah, because for a long time, I didn't even identify as disabled. I was like, I'm chronically ill. And for me, in my mind, that wasn't the same, I felt I didn't have the right to claim this because I was in a wheelchair user or, you know, I didn't fall into the categories that I grew up thinking of as disabled. And also, I didn't know what accommodations to ask for. What do you ask for when you're just like, well, this is really tiring. Now I would say, "In this conference, we should have a quiet room where people can just go and like rest from being overstimulated." That would be an accommodation. But that took me years to come up with that, and to respond to that need, as opposed to like just forcing myself to be as quote unquote, normal in front of everyone else, and then spending all of my alone time recovering from trying to be normal.

R: Yeah, I think that it's really easy for coping strategies to just fall into self destruction. They're so closely knit. And I mean, on the one hand, that is what allows you to manoeuvre in the world. But I think there's an impulse to do that at your own expense. And I think it is really hard. Like, I don't know how this relates to kind of identity politics, but I think it is really hard to trust your own truth, if it's not validated by the world around you. And so anything that is happening on an internal level, I think there is this pressure, you kind of take on the perspective of the outside world to a certain extent, you bring that inside. And there's just a heavy degree of frustration, at least that's what I experienced, which is this kind of self destruction, which can come out as trying to adapt working extremely long hours or writing for me, like the way that I wrote, I put so much pressure onto the page, and then I would erase holes in my paper just from writing the words wrong, like over and over again, it becomes likeso dark. Yeah, absolutely. Yeah. And I think the people or the teachers around me would be like, "You got to stop racing holes in your paper."

Which, and I think they, they saw it as a concern, but it just comes on, like as an another "Wait, you know, like you really like I really was trying so, so hard". And then the the manifestation of the effort itself becomes a alienating factor in the experience as well. The effort makes people uncomfortable.

E:Yeah, I mean, we've had similar experience, I think like that. Also, in university, when you're like, "Well, everyone seems to be getting it faster when I seem to be having to put so much more effort". And that made me think of crip time in relation to all your audio books and things and, correct me if I'm wrong, but I believe like partway through your first year of university, you kind of gave up on them, because it's just, like, take so much longer to do it. And so you were like, either not do the reading, kind of skim it.

R: Yeah, yeah, I guess that would be another adaptation. But because I did have I had Kurtzweil. So it can read the text and I would just have to get my textbook, and then I had to bring it to the Disability Services, and then they would scan it, and then they would give me back the file. And then I could listen to a computer, read the file. And I would have to fill out a form with like the, the textbook information. And I really have a hard time like scheduling like that kind of, for some reason, especially at that time, bringing the textbook to this place and giving them the information and then coming back to like, pick up the sliced up pages, like all of that just felt very overwhelming. And then, for the end result, you get to listen to a computer voice read philosophical texts, experimental English novels.

There was a really interesting moment, or it's the end of "No Telephone to Heaven", I think was the title of the book. And there's a part where at the very end, where language just disintegrates like it breaks down. So it's the let the words come undone. It's like a really fascinating ending to the novel. And my computer's reading me this book and then it goes like "puhpuhpuhpuh-tatatTATA-ahtahtahtahtahathataht!" and I thougt my computer was mistaken. I don't know, it's a translation thing. And in that case, the translation of this story to a computer with identical inflection, it was just not very compelling. So I would sort of read sections of things, listen to sections of things. And then I would find notes, I used a lot of secondary sources. And then I would listen in classes. And between those things I would kind of construct, you know, like, what the material was. And then whenever I wrote a paper, I would pick a shorter book, and then I would read that, you know, and I'd like, listen to it, and then read the text at the same time. Yeah, yeah. It was not a not a great, great system.

E: For me the computer reading,YI've used it a bit, but mine was also randomly decide to not be able to pronounce common words like "the" and that it would be the "Rachel attended. T.H. E. interview."

R: I know. And like one thing I did enjoy though, is I just felt like it was all my prep my own private jokes, like there was like no one else around. That's funny. And I wish there was somebody else who could hear this just be like, snickering to myself in my room listening.

E: But I remember when you told me you were using that software on Spinoza's "Ethics". I was like, "No, Rachel. No, no! This is not a linear piece!"

R: That's the problem. Yeah. And I honestly don't know kind of how you adapt text like that, like I found philosophy extremely difficult to interact with, because you can't listen to just somebody reading it. Because I just can't keep up with the ideas like I'm like, What? And then you go back like what like, you hit the 20 seconds backwards mark, you listen to it again, you're like, what like, and this there's no way to kind of... audio does move in one direction, and you can back up, but for things that require really going over them with a fine comb and pulling things out. I do find it's a difficult translation. But in terms of adaptation, that is a benefit to a lot of people, I find the emergence of podcasts and how much people love audiobooks. Now, like, for one thing, now I can interact with the news! I remember being a teenager and "I'm like, I am sort of, like, I want to read newspapers, because I am interested." And then trying to read a newspaper, I'm like, nope, no, no, this isn't gonna happen.

No, but I can listen to now podcasts that tell me about things that are going on in the world, I do care. And I am interested. And I just think that's so interesting, the way it's transformed, you know, like, people listen to podcasts, as they're exercising as they're doing dishes, they do it for their commutes, like the ability of audio to be brought into other spaces is something that it's obviously had mass appeal. And then also maybe this idea of it as a different kind of antidote to loneliness, I think it's kind of interesting, the fact that someone has voices in your ears.

But since I was a kid, and you know, the way to access audio materials would be to go to the library and get the cassette tapes, you know, and those books were so expensive to purchase. So like I would not own my own, but just going and and renting them. It's just amazing how much that has changed. And also I think attitudes towards listening has changed because of that as well. Because Yeah, I had teachers who I would say I read a book, and then it would come out that I had actually listened to the book. And they're like, why did you say you read it? You clearly didn't you didn't read it. I do remember coming across the idea often that just like you can't absorb listening the way you can if you're like sitting andso I was kind of like coach through that by several teachers, that would be like, at the very least, you should be following with your eyes while you're listening, because you just can't absorb information to the same extent that way, which is a really interesting idea. And one thing I really found interesting, too, is and this is one specific person, I don't know how I feel like it is a fairly widespread idea, or at least was at that time that you put writing at the top of communication. And then like speech and talking would be below that. And my teacher really did say like, like writing is the sort of higher form.

E: And hierarchy.

R: Yeah, it sure is. Yeah.Yeah, yeah, absolutely. So I got that idea. And I also remember, even at that time thinking, like, how can you detangle those things, because all these papers and books that were that were reading as it's like highest forms of expression, those came out of conversation, people talked about those ideas, but they're not, they're not separate. And I think that the extent to which our communications styles they're all wover together, but will often separate them out or put them in very distinctive categories and hierarchies. I think we don't know how to do categories without creating hierarchies.

E: It's like it with the paper saying that crip technoscience is committed to interdependence, as political technology. And like, I feel like everything we've been discussing has been that like the various connection, how our communication styles are interdependent how we engage with standards, whether it's in a classroom or in the workplace is interdependence. How important to this to have social recognition for our experience. You know, when people talk about feeling seen, that is game changing, but it's so hard to explain, like, what does that mean? realising that, "Oh, I'm not alone, labouring here on the side trying to fit in." It's like other people have relatable experiences and how important that can be for one's own relationship to our hacking and our coping mechanisms. Well, I really want to thank you for joining me in this conversation today. I was really excited to talk about you. And do you want to let people know where they can find your work or your work at being?

R: Yeah, so you can find out about being at beingstudio.ca or beinghome.ca is where we're housing our kind of COVID specific online project. So that's where you can find our podcast, you can find online magazines. And then for my personal work, you can find me at Rachel's with grey.com. And I'm also half a coffee on Instagram.

E: Thank you very much! Bye!

R: Bye!

E: Thank you for joining Rachel and me today. Please let me know if you enjoy this format and drop any questions in the comments.

Transcribed by https://otter.ai