Queering Neurodiversity with Kevin Gotkin
Audio engineering by Hasan Insane
Captions TBD
Episode Three of “Dreaming Different” is a conversation with former professor/disability rights educator and current access ecology practitioner and disability arts organizer, Kevin Gotkin, about the intersections of neurodivergence and queerness.
This dialogue will introduce and explicate the term “neuroqueer” and explore how we can view the world through this framing of fluidity.
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“Neuroqueering is this process of unfolding and pulling back the layers of this ableist, sanist onion that is the world.”
—Kevin Gotkin
Transcript
Jezz
Welcome to Dreaming Different! I'm your host Jezz Chung and today's guest is Kevin Gotkin. I'm so excited for this conversation about neuroqueerness, about just who we are in general, about access magic, about terminology and language that Kevin has taught me. I'll start off with a visual description of myself today. As you know from previous episodes, I am Korean, I have long black hair currently pulled back into this slick pony. I am wearing a lime green one-shoulder top and I usually wear fun makeup around my eyes. Today I have these green gems, it's like light green and neon green gems in the shape of a flower. And I have one around each of my eyes. And I'll pass it off to you Kevin for your visual description.
Kevin
Hello hello this is Kevin. So I am sitting in the growing sunlight of Brooklyn, Lenapehoking. I am a scruffy white person, I have kind of a mustache thing happening. I'm also in the green scenario with you, I'm wearing a bright kind of neon green shirt. My favorite color. And I'm wearing a beanie that is like black and white tie-dye and I have over-the-ear headphones and there's a brick wall behind me with a text-based artwork by an artist named Jen White-Johnson and it says “creating more anti-ableist spaces.”
Jezz
Yes, we love Jen White-Johnson, also a guest on this audio series. I want to start off by sharing with the listeners and the readers how we met and the impact you've made on me in the time that we’ve known each other. I think it's actually been, as we're recording this, about a year since we met. We met at this nightlife safety forum that Oscar Nuñez of Papi Juice organized. It was after something tragic that happened in New York City queer nightlife and we came together to talk about safety, and I think this is a topic that both of us have been talking about separately and we think a lot about. I remember I came to the forum a little bit late and I didn't get to hear you speak at the beginning and as soon as the forum ended, one of my best friends Yanni came up to me and said “Jezz you have to go meet this person over there because they were talking about everything that you always talk about and I think that you really need to meet” and so I saw who my friend Yannik was pointing to and you're wearing this green outfit. It was like neon green actually. Whole outfit head to toe, I think you had a matching mask. And I was like immediately, you are my people. And I just came up to you and then we were probably just like kiki-ing about our love for color and sensory joy and then talking about sensory safety and all these things. And since then, we've just kind of kept in touch and you brought me into work together on this Disability Pride Month event with the Lincoln Center in July of 2022. “An evening of access magic” is what you called it. And even that language…this is truly I think the biggest impact you've made on me…you've introduced me to so much language that has been so illuminating for me in terms of how I want to contribute to and learn about the legacy of disability justice. And you have an amazing newsletter Crip News where you've been curating news about disability arts and politics. And everything you write about and all the work that you do is like this portal to me. And you talk about magic a lot too. So I just love that you approach access through a creative and artistic lens, through a communal lens, and just all that to say, I think meeting you was a moment of magic and I'm such a huge admirer of the way that you think and the experiences that you dream up. And so excited to talk to you about access and neurodiversity and queerness and wherever else this conversation takes us.
Kevin
Ah, oh my gosh, I'm smiling so widely. Yeah yeah yes I am so grateful just to be in your presence Jezz and to have connected with you. Yeah, there's like a mind melt. There's a synching up that happens with rad neurodivergent babes that you meet out and you're just like oh my gosh we have been sifting through the same things, privately maybe alone or with other people, and then when you connect it's like when a raindrop slowly descending a window hits another one and they move together. That kind of speeding up of wow, yeah.
Jezz
Wow, I love that visual.
Kevin
It feels very magical for me too and I'm so so grateful to be here with you.
Jezz
Ah, amazing. Well this brings us to our first question that I've been asking every guest.
What are you thinking differently about lately?
Kevin
Ah, so much. Yes, so so much. Maybe also just a little bit of background about me. I've been thinking differently about how to do a little background. Because I am always wondering like who am? Where do I go to describe who I am? And there was one time a few years ago when I was like— why don't I just take the question as my identity. So I do sometimes go by “who girl.” Just like the uncertainty— the mommy of the house of uncertainty, as I like to say sometimes. I think for me also describing my background…I could resort to all of these institutional affiliations which then kind of just lends itself to a very careerist approach. And I'm a disability organizer and the experience for most people of disability in the U.S. is not being able to meaningfully participate in an accessible workplace. So then when we're out here naming our affiliations with workplaces, I just find it kind of runs counter to solidarity and how we should be focusing more on anti-professional connections.
But maybe I will just kind of name some of the places I've been just ‘cause it is helpful. So I was an academic until just like a year and a half ago, that was the world that I was in. I started ten years ago. 2012 is when I entered disability community in the academic world. So disability studies was this field that I discovered and I stayed in that world and was dreaming of being a professor forever and I just kind of started getting agitated. I wanted things to move quickly and I wanted there to be more meaningful, broad work and I think I slowly identified, I'm an organizer, maybe more than a professor or a scholar. And so I moved out of academia and became an organizer and that term is actually very messy so sometimes I say I'm a disorganizer and actually maybe messing shit up is more important than organizing it. But I also love the way when people identify themselves as community organizers or as organizers, it's this rich legacy of activist work. There are so many different kinds of organizers. If we were all just organizers, if we could all have the bandwidth to just focus on things that are happening for us, what an incredible world we would live in.
But I have been thinking differently about what it means to be an organizer. I think when I left academia, I needed to latch onto this other thing and I wanted to describe myself well but I didn't really know [how]. It was always just unsatisfying to meet someone new and be like, I don't really know what it is that I'm doing, I'm kind of in the art world, I like to teach, I like to facilitate, I like to study, and what is it? I came out with this really intense interest in being identified as an organizer. I'm organizing. And it was very plainly served to me that I was deputizing myself to do all this work that maybe wasn't actually for me to do and what I needed to do as an organizer was actually just figure out what has been happening before I got here and figure out what old knowledges our communities already hold. Like organizing seems to suggest we're going to build this new thing and construct so much new stuff but I’ve learned, in community, that that buries a lot of stuff that is already there and we're just ignoring in our rush to do something new. So I think I want to identify the thing I'm thinking differently about is maybe being almost an organizer. Like maybe I'm almost organizing. And so the stuff that I'm working on right now is figuring out how to get artists guaranteed income checks. I'm working on a guaranteed income program right now and also an artist employment program. And I feel like there's so much newness and so much that I'm learning every day that I want to bring humility and curiosity into my work. And so I'm thinking differently about how we identify professionally, how we identify in community, how we name, in truth, what we're doing in the world and how we're doing that and how we can do that with the least amount of harm and the most amount of possibility for building collective power.
Jezz
Yes, oh I love all that and I love your intentionality of language because that is a form of care. To be careful about the language we use to really think about what does this mean? What does the term organizing mean? That's something that has been become really ubiquitous within maybe the social circles that we're a part of in New York and the worlds that we're a part of. And I really like your point about how organizing can be information too right? Organizing people, organizing experiences, which as your work in academia as a professor, that's what you are doing— organizing information and sharing it and also organizing as a term of addressing needs, understanding what those needs are. And in order to understand what those needs are, we do that research and that sifting through history of what is the legacy that we come from, of queer liberation, of disability justice, of abolition, of transformative justice. All these things, we are almost organizing ourselves within the future, to the past, present, and future of this work. So that's a really beautiful kind of seed to plant in people to think about: what am I organizing within my life too? How am I orienting myself? Is another question that comes up with what you share. I think all of this is a form of queering organizing too. It's queering organizing. It's queering the future. It's queering the past, the present. And I want to talk to you about the term neuroqueer because when I was talking to you about neurodiversity in general, I asked, “do you identify as neurodivergent?” And you said, “I actually identify with the term neuroqueer” and I'd heard it before but I want you to kind of share how you discovered this language and what it means to you.
Kevin
Yeah, yes. Well, I love that you mentioned the way language organizes. And I think about that a lot, I'm someone, and maybe this is the academic energy in me, like a lot of academic work is trying to find the language and sometimes I worry that it's a lot of distraction because people are like, “here use my term” and well do we have to use that, what if there's so many terms and we're all actually trying to name the same thing. Why does it matter if we use this or that. People hold so much fear around the right kind of language. So sometimes I'm like, well it's maybe less important that we decide what particular thing to call this and make sure that we're anchored in values that align. There's an artist and organizer Cyrée Jarelle Johnson that has taught me a lot about that. The politics of language and disability is very important and there's been a lot of activism around language. But sometimes people, they want to attack each other for particular words and not for the larger ways that we're embedded in systems of violence and we…anyways.
Jezz
It's really…the language is kind of an opening for the practice is how I think about it. So then this language for me becomes a portal to the practice.
Kevin
Totally. Yes, yes, and I think that's it. If it's a portal, then it’s really important to create the right portals. Sometimes though I feel like people end with, especially in institutions, people are like, what's the right language we should put on our website. And I'm like wait wait wait wait wait, there's so many other things we have to talk about with this. So neuroqueerness, it has this real pleasure and satisfaction in finding that as a name. And being like oh my gosh that is the container for a lot of my experience. I think that is so satisfying for a lot of folks who have come to disability and come to identify as disabled through non-apparent disability experiences. So stuff that really evades like the huge regime of biocertification determination of who is and isn't disability. A lot of people not wanting to take up the term because they feel like there's people more deserving in some very abstract ways, right? And so people are like, well I'm not disabled right?
Jezz
Which is very similar to queerness too. People are like, oh am I allowed to [identify as queer] if my past experiences are not “queer?”
Kevin
Yeah, for sure we should be keeping tabs because we have so many finite resources that need to be distributed in ways that are genuinely oriented to justice, that is important. But yeah, I think I've found that also my experience, I can organize my life and organize better in my work when I do identify with the term and see, what does this really open up for me? So neuroqueerness has this satisfaction of being that thing that I've been trying to find. I should say, I would put neuroqueerness in this web of weirdness. So like neurodivergence terms like “mad” or even “crazy” that are being reclaimed from folks who use or have survived psychiatric systems, and folks who are doing autistic organizing. I also love the term bonkers. There's this web of these terms that neuroqueerness sits within and just to continue what we were just saying, I don't necessarily think we need to figure out the right ones or triage which ones should take priority because the many terms just reflect a wonderful variety of movement work and dreams that are out there. And people have really intense connections to one or another term and you know we should always hew to what people want to to be called in what language they're using to organize their lives. But I guess within this web of weirdness, I will say one organizing principle that I have found is that when we identify as neuroqueer, neurodivergent, mad, bonkers. We are sharing a desire to bring the weirdness internal, which is very different from the way that terms like mental illness have been deployed. You know, with really good intentions in many cases, but as a way of trying to separate this experience of a break from normativity from some like core to the person right? So you know there have been times in my life when it's been important for me to say, I'm sick, I'm sick right now, I do need to just recognize that I am in a flow with this thing that is acting on me. But. And you'll hear that a lot with folks who are doing mental health activism, folks who use “mental illness” or “mental health” as terms. It's really helpful to say: this person is not their neurodivergence. I get it. That's politically expedient, that is important work, strategic work. But the web of weirdness that I'm interested in does take that neurodivergence and makes it intrinsic, to say like— this can't be separated out from who I am. Neuroqueerness, being neurodivergent, that defines the way that I move through all of the ecologies that I'm and that is precious and important, something that can identify with, and it's not shameful. There should be no stigma around it. So those kind of models of weirdness from within that you want to cultivate right? Like to say, this name's why I don't fit in the world in many ways. This names that friction or this discomfort in the world. And you know, that's good, that's fine. I don't need to shape myself to fit in the world. Maybe the world is crazy, and I'm not crazy but the world is crazy. Look at the way these systems are designed, right? So that basically society is crazy. We're not crazy. That's a really important legacy for mad activism.
Jezz
Exactly!
Kevin
Just to look at the social construction of sanity and who's been claimed to be threateningly irrational or unreasonable. Like it usually tracks with people who are experiencing forms of oppression along the lines of race and gender and queerness and transness, class, nationality, religion. All of this tracks. And then you have to at a certain point realize like wait, there's all of these groups that are suddenly being told that we're crazy so doesn't this kind of suggest that medicalization of things like mental illness is inextricable from all these forces of dispossession and oppression, you know? So there's this kind of intersectionality that is at the heart of this, what I would think of as, a web of weirdness in these terms that we're using.
Jezz
Yes, and all of this, you know, to summarize what you're saying is questioning oppression. Questioning the conditions of oppression instead of the symptoms of oppression. What you’re speaking to so much just reminds me of the illuminating feeling I got when I discovered the medical versus social model of disability. And you know, medical model of disability kind of being focused on pathologizing people which, for people unfamiliar with that term, it's just kind of like putting a disorder and a mental illness and naming things like oh you're this and you're this and you're this and categorizing and labeling people as, this is your disorder or disability. And then the social model of disability encourages us to question the society that actually disables people, the society and the social constructs and the systems that we live within that prevent people from accessing buildings or information or community or healthcare. And something I struggle with consistently as I'm informing myself in more of this work, and as I do, I'm very big in sharing in real time my learnings online and I think the effect of that is, then people start reaching out to me for consulting work or different kind of work or speaking and they want me to talk about this and then I struggle between, how do I make this language accessible, in terms of…this is so new for a lot of people, because…well to be frank, ableism is just so ingrained in our society. I think that is something waking up to and that is something I'm really adamant on saying as often as I can because we've collectively, especially with the summer of 2020 and all these social movements that have been happening, kind of awakened collectively to systemic racism. But we have not really awakened to systemic ableism because I hear it in the everyday language that people use all the time. So I guess that to say, it's interesting, the pull between, how do you know people like you and me who are really deep in this and are committed to this and are really exposing ourselves to and awakening ourselves to different frameworks to think about disability and to think about our bodies and our minds and the connection to each other. And really, I think all of this is also a very much more empowering way to look at the ways that we move through the world. Which kind of again is like, when you describe…can you summarize again? Of neuroqueer divesting from blank and blank at the same time.
Kevin
Yes, totally. I mean what I was going to say is that what you just said is kind of like your neuroqueering ableism, in how you're describing. You know how I said I was kind of an almost organizer. You know who’s 100% an organizer, like no qualifications? Ableism. Ableism is such a good organizer in that it's difficult to even recognize the ways that it organizes, you know. It's just such a powerful force. So this term neuro queerness really, it started actually as a verb. So we've already kind of been bandying it back and forth as an identity category. But that's the most recent development. Let me just kind of give you what I have discovered as the kind of used history, a little bit. And just the qualifications to say, I don't love origin stories and sometimes I realize the way people have come to talk about the history of a term really tracks reputational networks and who has access to these forms of resources that can amplify and then solidify a particular narrative. So just to say, there could be so many other ways that neuroqueerness has come into the world and yeah, I think it should be a collective project for us to try to access those. But an important kind of citational history here is that a scholar and organizer named Nick Walker, she describes herself as “queer, trans, and flamingly autistic,” introduced this term neuroqueerness in a paper in grad school in 2008. But she also learned that it was also independently discovered by Athena Lynn Michaels-Dillon and Remi Yergeau. All thinking about neuroqueer, neurological queerness. So it was introduced, like the word queer was, as a thing that twists and tilts the status quo. I really love thinking about what is queer, like what does that really mean? I go back to a text from 1993, this kind of mother of queer theory Eve Sedgwick who identified that the word queer itself means “across” and there are these different root words that mean transverse or to twist or athwart. So there's this kind of like twerking spinning twisting thing, nonlinearity. So when queerness and when neuroqueerness are introduced in these academic settings, it's a thing that you're doing to show the kind of contingencies, the design of neuronormativity and heteronormativity, and the way that those things are connected. So one of the definitions that Nick Walker has put out that I really love is: neuroqueering is the practice of queering, subverting, defying, disrupting, liberating oneself from neuronormativity and heteronormativity simultaneously. So that's just to think like wow, just to share I guess on the personal level the way this works for me, the way I realize like oh gosh those things do my experience of queerness and my experience of neurodivergence are linked is through the process of being involuntarily medicalized as a child. So yeah, I was not really offering consent for some pretty intense psychotropic interventions like in my mind but also then in my body mind, like I couldn't distinguish even my mind from my body. When I was for example, switching medications and going through those like really intense withdrawals in fifth grade class, where my mind would be totally jostled for a second because it would feel like all the blood was being sucked out of my body and then pumped back into it. And then I would later be like, what the fuck was that? And my doctors would be like, that’s just withdrawal honey, don't worry, that's just what happens with SSRIs. And yeah it got intense, and I'll just mention, encouraging everyone listening to just take care of yourself if you need. Pause, breathe, whatever you need to do. Yeah, not long after this kind of involuntary medication, medicalization, I attempted suicide. I think a lot of the ways that I was bullied really intensely, like very targeted, heinous, harmful shit, was along both lines— that I was this queer little boy, this little flamboyant, bring in the faggotry in ways that were not cool, that were like just not with everything, you know it was always out of sync even when I didn't want to be so marked as outside, I didn't find that I wanted to just be smoothly integrated into a new school, and there was the queerness, the flamboyance, at the same time of me not really knowing like how to act socially and I would study people for how they would do very casual, mundane, ordinary things. You know, how people would stub their toe. I would like really fixate on, how do you do these things that should be candid and should just be kind of like authentic. And I always was like, I need to study because I don't know how to act, you know. And I think there was some madness, there was some neurodivergence, that was completely inextricably entangled up with my, at that point it was kind of pre-queerness or it was queer because it was pre-identity. So yeah, I was as a little kid, kind of neuroqueering the scenarios that I was in. I was like bringing a markedly different kind of energy that was often marked as a threat. That's kind of why I feel like I was medicated, like just make him kind of fit in like calm him down right? Like what if I had maybe queer teachers, they would have been like oh yeah, look at her. She's killing it. You know like maybe it wasn't weird unless of course there's this neuronormativity and heteronormativity that overtakes.
Jezz
All of this, what it brings up for me is almost this venn diagram of forced resilience that queer folks and neurodivergent folks have to develop. A forced resilience, right? Like to be constantly deemed as not normal, that’s what the divergent in neurodivergent means, like not normal, outside of the norms, outside is of what is considered normal. Because there really is no such thing as normal and normalcy is an illusion. But it's this forced resilience of consistently trying to keep yourself alive. I mean I really relate as someone who's experienced very intense symptoms of depression, anxiety, ADHD since a child, like chronic symptoms. And I think when you have those thoughts, those feelings, that just kind of constant voices in your head, the intrusive thoughts, and also the lack of support. The lack of institutional support, educational support, familial support, community support, all of that. Then you are just forced to then—flip side because you know I'm very careful about the way I talk about resilience because it's this forced narrative upon queer and disabled folks— I think the flip side of that is curiosity. That's the beauty of it for me, because then the resilience turns into, which is what I hear so much of in what you're saying, I mean the fact that you've infoshared, I use the term infoshare instead of infodump because it's softer and it's not dumping, like share with me, I want it I know, right? It's not a dump. It's a share, I’m receiving it so openly.
Kevin
Um, yes yeah, who says this is a dump? Yeah!
Jezz
As you're infosharing all of these terms and all this research you've done and even just the course of your life and what you've dedicated yourself to, I think so much of that resilience has turned into this curiosity and you know we have another episode coming up about disability superpowers and kind of flipping this narrative of disabled people are not to be pitied. We're actually leaders. We are visionaries. There is so much to learn from disabled perspectives and disabled wisdom. The wisdom that comes from having to develop that wisdom and that innovation and that curiosity. So I think it's really incredible and beautiful and just so generous that you've kind of taken those experiences and then developed your values so deeply around it too.
Kevin
I mean I feel like you're describing the collective movement of the term neuroqueer, right? There's the queering of it, that's that verb, that action that might not actually be so intentional. You know, it might just be these neuroqueer kids trying to fit in and experiencing these harmful things. But then we use those experiences and even before we have the language and find the language to then bring that inside. So that's where neuroqueerness becomes an identity for a lot of people who, one of the things that Nick Walker says is, you're neuroqueer if you neuroqueer. So that also opens up the possibility for all these kinds of oblique attachments for people to realize, maybe I don't have what I think of as the right credentialing to claim this. But actually if neuroqueering is this process of unfolding, pulling back the layers of this ableist, sanist onion that is the world. There's so many different ways to be involved with that. And I want to make sure that folks have a grounding in this term and also to honor the history of the organizing that has brought this more and more fully, more and more legibly and familiarized into the world. I'll just kind of quickly gloss the 8 points that Nick Walker proposes as a definition for neuroqueerness so I'll just go through them and that way maybe folks can listen with their own kind of curiosity born of enforced resilience as you're talking about and I don't know, maybe I hope, would imagine folks listening to this right now will find themselves in in this. So the first point is being both neurodivergent and queer, with some degree of conscious awareness and or active exploration around how these two aspects of one’s being intertwine and interact. So just activating that curiosity, that is kind of the first point— being curious about the 2 things: neurodivergence, queerness. It's also embodying and expressing one’s neurodivergence in ways that also queer one's performance of gender, sexuality, ethnicity, and or other aspects of one's identity. So being neurodivergent and that expressing intentionally or not, a kind of twisting or twerking of other kinds of performance of identity, especially gender, sexuality— that's a neuroqueer experience. The third is engaging in practices intended to undo and subvert one's own cultural conditioning and one’s ingrained habits of neuronormative and heteronormative performance. I think that's really important internal work to draw out the ways that we have tried to internalize the ableist status quo and undoing that, a really important kind of personal work. There's also engaging in queering of one's own neurocognitive processes by intentionally altering them in ways that create significant and lasting increase in one's divergence from prevailing cultural standards. I love that. Again, more personal work. Like get as weird as possible. Become the exquisite neuroqueer self. Okay, fifth point here is approaching, embodying, and/or experiencing one's neurodivergence as a form of queerness. For example, in ways that are inspired by or similar to the ways in which queerness is understood and approached in queer theory, gender studies, and/or queer activism. So yeah, the way I think you named this earlier, that there is a kind of inherent queerness to neurodivergence. Number 6: producing literature, art, scholarship, and other cultural artifacts that foreground neuroqueer experiences, perspectives, and voices. Like this, we have this moment right here we're doing that. And then producing critical responses to literature and or other cultural artifacts. And then the last one is working to transform social and cultural environments in order to create spaces in communities and ultimately a society in which engagement in any or all of the above practices is permitted, accepted, supported and encouraged. And I think that's the real call to organizing that is a definitional part of neuroqueerness, right? We've now identified all these ways that the world is designed around neuronormativity, heteronormativity. So now we need to build a different world that centers awareness as viable, beautiful, exquisite, generative, brilliant way to move through the world. So I hope folks feel like, okay now I have a little bit of a sense of what this term is and maybe you're thinking of all these other ways of what this could mean for you. But just to do a little bit of that citational history, shout out Nick Walker and so many amazing organizers and scholars who have brought this term in for us to to chew on and work with.
Jezz
Ah, I appreciate so much the labor that went into laying those out and sharing that with us because it gives us a framework. I think that's why I am so curious about disability justice and movement work because it gives us a framework for us to orient our lives and for us to organize our lives, for us to design our lives. I study a lot of lifestyle design too which is just kind of creating elements of your life that center satisfaction. Like, is this satisfying to me? Even listening to you speak about all these terms and this language, it's very satisfying because it gives us possibilities and gives us alternative ways of thinking and seeing things and really shifting that power from outside of us to within us and say, actually this is a source of pride, this is a source of strength. And this is something to really lean into and kind of shout out loud. And yes that can be I think I would encourage people reading and listening to do this in safe spaces. I think for me in my journey as a late diagnosed autistic person, I've been in a journey of unmasking over the past few years which means having conversations like this, openly. And it means kind of identifying with different language and sharing that language out loud. It means just letting myself show up as I am, where I am, how I am, and that can be terrifying and I think it's a constant analysis of how safe I am. But language like this, when we talk openly about it and when we kind of bring the beauty of it as you've been doing, it becomes easier to find safety in it. Because I find so much safety in beauty. Like sensory joy and colors and shapes and all these things do bring me so much safety and a kind of ease in my body and satisfaction in my body. So, it’s nice to root in that. Also as you share all these things, it just reminds me of the creative process in general. I think of building the future as a creative process. Equity work and justice work and all of this work of transformation and change is a practice of art making and creativity. Which is messy and weird and it's fun and it's hard sometimes and it's confusing and you don't know where it's going, but there's something that continues to pull you and it's this constant listening to this drum of your intuition and all of what you've been sharing has been that and I think that's a way we can think about it too, when it feels daunting. Like, oh I have to do this or I have to learn about this or I have to unlearn this or I have to...no actually, we get to because this is what helps us think more creatively and expansively and fluidly and then that helps us also just love more fluidly and expansively too, and connect. And I think that’s kind of the source of all this.
Kevin
Yes, so much. And that's why I love one of the points in the definition of neuroqueerness about producing art and I'm looking on the wall behind you where you are, there's this incredible text based work. I think it's a quote by Toni Cade Bambara about “the role of the artist is to make the revolution irresistible.” And yeah, that is why a lot of my work is in the arts because I find that the aesthetics of access like how we actually use accessibility as a set of compositional tools. It's paint, it’s audio, it's video. These are actually materials. We often think of them as separate, here's the artwork, now we have to design this access thing then after the fact we need to make it accessible. But what I'm interested in is like your work. The way that you share the way you move through the world and especially like your makeup design, the artistry that is your embodiment. That encodes a set of aesthetics that are not just superficial, they are actually creating an aesthetic ecology that brings people in. That relational invitation, like come in, share this, let's proliferate all the different ways that someone might be experiencing this moment right now reading or listening and all the places you might be. If you are stimming right now, if you are in the tub right now, the aesthetics of this kind of being together are just the center of what's possible. Yeah, I think that's why I'm so focused on what artistry can mean when it is driven by let's say neuroqueerness and disability, madness, it’s because we're creating the feeling, the actual relationship of our embodiment to the revolution and we’re making it cozy as hell.
Jezz
Wow! Oh my gosh, yes. Yes, we are feeling our way into the future. I think about that a lot, like how do we not just work our way into the future, build our way, organize our way into the future, but feel our way into the future. I LOVE the language of the aesthetics of access as an invitation. Oh yes, because that is what I think when people are designing experiences, that's something to think about. That actually, access adds to the aesthetic pleasure of it. It adds to the enjoyment of it. It's not just this obligation or this chore or this have to or like a checkbox on some list. No, it actually adds to the fullness of the experience. And I wish that…I think that's a shift that I really want to plant in more people's minds.
Kevin
Yeah, there's never no aesthetics, there's never no artistry. It's just what kind and why don't we make it more beautiful and more able to share with others.
Jezz
Yes, that! Oh, that is the way that I want to approach accessibility. It’s that, and you just summarized it. Oh wow. Well, okay I think it's time to wrap up. I think we've given people sooo much to sit with and chew on and digest and process and I know if I were listening or reading this, I would just want to probably like lay on the floor for a good 20 minutes after and just think about…I'm a big, I need space to integrate and process and you've been so generous with everything that you shared. So I really encourage people to integrate, after this ends, if you have some time, please just sit with this. Because it really has a power to transform so much of the way that we practice our everyday values and relationships and how we work and how we create. So I really encourage that with people and final 2 questions I have for you and the first one is: what is some language you use to advocate for yourself?
Kevin
You know, I am someone who is non-apparently disabled so a lot of folks without knowing me will relate to me as an abled person and I think that gives me in a lot of ways a lot of strategic opportunities to recode how people even think that they can identify what disability is. So I feel like I need to write a little bit more about this and make it a full intentional strategy but a lot of the language I use, I have a kind of stealth politics around it. So in some spaces, I'm involved in one community of folks who gather in sanctuaries far away from cities and are feeding each other and connecting with the land and in that space, I could come out and be like “let's do disability justice” [but] actually it's already happening here. There's a lot of queer elders here, you're fearing out how to make them comfortable— that's disability justice. And this is what I do instead, I'll say “I would like to begin a campaign in this community to vanquish our common enemy of uncomfortable seating.” And people think I'm kind of kidding and then I'm like, I'm not kidding. We're going to gather around this fire tonight and maybe we're going to do some ritual and why are we expecting to be uncomfortable? What's the problem with getting as cozy as possible and why not do what your body-mind needs to feel really really good, you know? So sometimes the language I use for advocating for myself and with others is naming what disability justice helps us dream up in terms that are very different from the way people usually react with fear or anxiety to the language of disability because there's so much legislation, there's so much regulation around disability, which is great. That's a mark of the success of the disability rights movement. It also has created a major public consciousness around whether I'm doing something right or wrong, am I going to get sued, is this going to open me up to liability? You know liability becomes the overriding effect that people bring to thinking about disability. So if you come in and you say “none of this is compliant, this seating sucks, someone could sue us.” Everyone's going to be on edge right? It's gonna be just prickliness everywhere and that's the opposite of coziness. So I think a lot of times I deploy this kind of like yeah stealth language where I just bring people directly into the work of allowing everyone to get what they need. I ask this of myself, I ask this of other people, “do you have what you need?” A lot of times, people who think that they have no needs because their needs are just so consistently met will be like “yep I'm good, thanks babe.” You know like, got it, got my water, got what I need. And I'm always like, just take a second, maybe it's a little more difficult or maybe you don't know. Maybe it's going to change. Do you have what you need, and maybe you've actually built a person that you are today because you've never actually had what you needed and it's hard for you to even imagine what it would mean to have what you need. So these are the kinds of questions that I try to, the language that I try to proliferate outside of the usual kind of domains of recognizable disability language. So that people find a side door into the same house. The house of access, basically.
Jezz
Yes, the house of access calls for abolishing uncomfortable seating and asking for people's needs. Love that. Okay, love it, love it. And my final question for you is: what do you want the future to feel like?
Kevin
[Deep sigh] I think it's just more coziness. I had this amazing thing that happened to me where someone invited me to a project that's called “Artists-in-Presidents” which I was like okay, what does that mean? And this artist Connie Hawkaday day invites people to address the public as if they were president. So kind of imagining what if we had an artist for president. It was really difficult for me to do because I just don't really live for electoral politics. I am all about supporting the organizers who are focusing on increasing voter access and that's amazing, but I don't really think elected office is where a lot of the change that I'm imagining is going to happen. Just happens more 1 on 1, directly meeting people's survival needs, it’s outside of major systems. So it was really tricky, I was like what would I actually say if I were addressing. It really short circuited a bunch of things and when I finally found my way, the speech that I wrote and we also worked with this amazing speech writer, we really had to kind of transform into the political arena which so many artists have never done, that was part of what this project is about. And I just called for coziness to be a political practice. And think about whose coziness has always been threatening, whose coziness has always been difficult, who can buy coziness? You know there's a market for coziness and there’s people buying it up, enormous amounts of coziness that they do not need and other people have never even imagined what it could be like to just relish in coziness because their experience of the world is just through self-advocacy exhaustion, the opposite of coziness. So I think of the future as a place where disabled communities are actually together in comfort and if you really think about what that would mean, I think out from that dream is a whole set of incredible transformations. Like maybe next week we could always be on the cusp of making this cozy world possible. So yeah, that is what I dream of the future. A cozy, comfortable place for absolutely everyone.
Jezz
Love that so much, who doesn't love to be cozy, right? That's true. Love it all.
Kevin
Right, right? And we're about to head into winter, I don't know if people are listening from winter coziness or summer coziness. You know there's so many seasonal cozinesses.
Jezz
Okay so tell us where we can find you online, where we can support you, where we can continue learning from you. Please tell us.
Kevin
Ah, well thank you. So I have to say, I did so much research and there's so much that I discovered about myself in preparing for this interview. So I do want to tell people, hold me accountable to this, I want to write more about neuroqueerness as it shows up for me, as it could be an organizing framework, what we can do with it, the way that it can intervene in the work that we're doing, especially movement work, building community power. So I just want to leave that hope. You can find me in the digital realm and there's more that I've written about this because this conversation has just been so profoundly generative for me. And the way you would probably yeah come upon that is my website: kevingotkin.com. You'll find a bunch of my work there. The thing that I connect with most people on is a weekly newsletter that I think we mentioned at the top called Crip News. Every week I gather a bunch of things that are happening in disability politics, disability arts, so that’s cripnews.substack.com. Or in the Substack app you can just search “Crip News.” And yeah, I'm on Instagram and Twitter. You can find me around, just feel free to get in touch. This is how I think of myself as an almost organizer, when people reach out and they're thinking about something, I can kind of tessellate, that, put that into a pattern with all these other folks. So connecting with others, especially new folks, is really important. So please please get in touch. And if there's any resources or people working on stuff that I can help point people to, that's the best stuff. I also am helping steward a disability-centric nightlife collective called the Remote Access party series. So you can check us out. Just Google search “remote access party collective” and you'll find us. I'm around. And I'm so grateful to have shared the space with you Jezz. Thank you for having me.
Jezz
Amazing! And as a reminder, we'll have these in the show notes so you can click through and subscribe and stay updated. Thank you so much Kevin for your time and your energy and your wisdom. I really enjoyed this conversation.
Kevin
Me too, me too. Thank you Jezz.
Jezz
Bye everyone!
Jezz
Thanks for tuning into Dreaming Different, hosted by Jezz Chung for Deem Journal’s Audio Series. If there’s anything in this episode that resonated with you, we invite you to be a part of our exploration in collective dreaming by sharing Dreaming Different with people you know and leaving a review on any podcast platform. Reviews are immensely helpful for our reach and impact. Also as a neurodivergent tip, I find that I process information more deeply when I listen or read something for a second time after I’ve had some time to digest it. Sometimes I even listen on 1.5 or 2x speed and that feels really good for my brain. Sharing those tips in case they can support you in processing all of this delicious information.
Big thanks to the entire team at Deem: Alexis Aceves Garcia, Jun Lin, Jorge Vallecillos, Alice Grandoit-Sutka, Isabel Flower, Nu Goteh, Jorge Porras, and Amy Mae Garrett for their contributions to the ideation and production of this series. Special thank you to Nu Goh-teh for composing the dreamy music you hear throughout the series. It took so many conversations, iterations, and practices of spaciousness to bring Dreaming Different to you and we hope it helps expand your ideas of the future, the world, and the possibilities we can create together.
If you’re new to Dreaming Different, we recommend checking out the introductory episode, which lays out the origins of this series, what we intend to explore throughout the episodes, and my personal journey with the neurodiversity paradigm. Episode 1 also includes some somatic and mindfulness tools to use if you feel any discomfort or tension while listening.
You can find the complete series including transcripts and show notes at deemjournal.com/audio and Deem Journal on Instagram at @deemjournal. I’m Jezz Chung, you can find me @jezzchung across social media, and I hope you do something to take care of yourself today and all the days ahead.
Thank you for dreaming with me.
Show Notes
Kevin Gotkin
Crip News, Kevin’s newsletter of weekly news in disability politics and disability arts
https://cripnews.substack.com/
Cyree Jarelle Johnson
http://cyreejarellejohnson.com/home
Social vs. medical model of disability
https://www.disabilitynottinghamshire.org.uk/
Nick Walker’s 8-point introductory practices of “neuroqueer”
https://neuroqueer.com/neuroqueer-an-introduction/
Constance Hawkaday’s Artists-in-Presidents
https://www.artistsinpresidents.com/constance-hockaday
Remote Access party collective, a disability-centric nightlife series
Dreaming Different is brought to you by Deem Audio.
Produced by Alexis Aceves Garcia, Jorge Vallecillos, Amy Mae Garrett.
Editorial by Alice Grandoit-Šutka, Alexis Aceves Garcia, Isabel Flower.
Creative direction by Nu Goteh.
Design by Jun Lin.
Sound mixing and editing by Hasan Insane.
Theme music by Nu Goteh.
