Sara Acevedo: Living Disability
This is the podcast of the California Institute of the Integral Studies, where each week we bring you conversations and lectures from our Public Programs series featuring world renowned scholars, leaders, authors and thinkers. In this episode disabilities studies scholar Sara Acevedo discusses disability, culture and identity. This event was recorded on March 14, 2018 in front of a live audience in San Francisco. To make sure you never miss an episode of the CIIS Public Programs podcast find us and subscribe on iTunes or on our website at ciis.edu/podcast.
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Hello everyone. Thanks for coming. I wanted to welcome you tonight. I'm so excited to see more people interested in learning about disability from disabled people ourselves. I guess I wanted to begin by telling you a little bit of, not an anecdote, but sort of like grounding our talk in current events. So, most of you might have heard that Stephen Hawking passed away yesterday. And the various disability communities around the world are pretty upset about the way Stephen Hawking's fast passing is being portrayed in the media. There was a meme circulating around that portrayed him like flying away from his chair and something saying, like, oh you're finally free from your chair. So, it demonstrates that those kinds of memes are being made by non-disabled people. Because if you speak to disabled people, the various disability communities around the world and here locally in Berkeley, in San Francisco, and in Oakland, and in the Bay as a whole, it's pretty rich and pretty vibrant. People will tell you that their accessibility devices give them freedom, as opposed to limiting their freedom. Right? So then there was this counter meme by a disable artist that showed Hawking flying away in his chair towards the sky.
So, one thing that I wanted to really touch on in terms of this portrayal of disabled people without us, right? It's been countered by disability rights activists, disability justice activists, very intently for the past fifty to sixty years. And I mentioned the moto or sort of like the banner, "Nothing about us without us", because that's a big theme. It's not that disability is erased from mainstream culture, it's the disable voices, representations, perspectives, and narratives are erased from mainstream culture. So there is a lot of talk about disability and there is a lot of representation on disability, right? But where are disabled people and those representations and those narratives, right? So, there is this, for instance with Hawking, going back to Hawking and thinking in terms of, "Oh! Stephen Hawking accomplished all of these wonderful things, is a commended scientist, visionary," he's been called, right? "Oh he's done all these things in spite of disability." That is the mainstream narrative that you would hear about Stephen Hawking. What would a disabled person or most disabled people or disabled communities tell you? Stephen Hawking accomplished what he accomplished not in spite of his disability, but because of his disability, right? And so there is this idea of portraying, again, like, thinking about portrayals of disability that do not include disabled people or disabled minds or disabled anything, right? There is this very extreme sort of polarizing forms of representing disability. I guess some of the most familiar ones are the pitiful, deficient, lacking human beings that need all this help, right? And that need all this mediation from people, from their immediate communities, from government and state especially, right? Like social interventionism is pretty huge in that sense. And so that's one that's very common and circulates a lot, and another extreme one is, "oh, this disabled person has really overcome and really, like, passed all these challenges and now they're who they are because they have overcome disability." We think about it in those terms that are again polarizing and very binary, like, where is the disabled body in all of this? Where is the disable embodiment, right? And how do we accomplish something by completely detaching or disengaging from our identities? What does it mean to overcome disability? Right?
So this whole narrative of, it's commonly called within like disability studies communities, and disability activist communities as well as the Super-Crip Myth. It's the mythology of the Super-crip. So cripple, crip, for us is a reclaimed word. Please don't be offended. That's another thing - there is a lot of good will and well intentioned corrections that come from non-disabled groups towards disabled people. That happens to me quite often as I utilize, I choose identity-first language. So I say, "I am an autistic person," "I am autistic." I do not use person first language. I do not say, "I am a person with autism," or "I have autism." Why not? Because I do not differentiate my embodiment, my lived expression, my needs, my wants, my desires, my challenges as a human being from my identity. So, autism is not something that I carry in a bag and walk around with, and then when it's convenient I just put it next to me and show up as Professor Acevedo, or however. Right? It is not something that I have ever wanted to do ever since I found out I was autistic, right? So, it's not a hat that I put on in an office, not a bag that I carry and just leave it at my own convenience and just like take it up again. It is an absolute, absolutely inherent part of my identity. I am autistic in every aspect of my being, in every cell, in every fabric and in every tissue of my body, and I do the things I do because I'm autistic. Not in spite of being autistic.
So I really wanted to touch on language and terminology because it has been one of my passions in doing disability justice work and in doing disability studies, and it is something that's usually contested. Even within the various disability communities. I mean we're not this unified whole, integrated and absolute. We're actually pretty fragmented and pretty rich and that's actually what actualizes our various communities. So, in that sense, I have written and I have said various times that the fracturing of disabled communities is actually a political tool. Why, because it allows us to escape from this, like, monolithic fixed normalized identity that the outside world or non-disabled world wants to impose on us. So we don't share the same views. Many of us do, many of us don't. A lot of people choose identity-first language. A lot of people choose person-first language. And we are okay with having those tensions; they are productive tensions within our communities. What is not so great is when I claim or tell someone, "Oh, I'm autistic," and they're like, "Don't you mean you have autism, because like, you're a human first." And so that makes me think, what, autistic people aren't human inherently? Is this some sort of like granted status by the outside world and imposed on to us? So again a lot of people within the disability community have said to me, livers of the disability communities have said to me like, "Don't we have bigger fights to fight? Isn't the language thing petty?" Whereas the others are more of like, in agreement or sort of like in line with my work around able-ist language. And I say that because, I mean, what some people interpret as petty is actually a vehicle of politicizing discourse. It is a vehicle towards social transformation.
Because we are constantly countering, constantly countering mainstream narratives, not only in our struggles, like in our organized politicized struggles, but by the mere fact of being alive and circulating around. Like, Stephen Hawking defied a lot of, like, beliefs in terms of ALS: Like, "You are not going to live past so and so," and this is a story that so many people who are born disabled are told, right? So, their life is sort of quantified against this like industrialized sort of measurement barometer; or "You won't be able to produce beyond this age," right? So, living our lives and actually showing up in space every day in the ways we do it challenges and sort of defies those ideas of disability in general - of disability, about disability and about disabled people. And I've always understood language as a battleground, right? It is a site of contestation. And I've always claimed that discourse language not only says, but it does, it does something. When we say something we don't stop at saying, right? And so examples, I mean there are so many, right? But stigmatizing narratives and language and discourses and ideologies manifest in the actual concrete physical material space that we inhabit and that we produce, right? As social actors, we produce the spaces within which we exist and inhabit. Not all actors have access to producing those spaces. And yet they are forced into navigating spaces that they have played no role in making, in envisioning, in participating in, right? So sort of the idea of utilizing language as a power reversal tool is sort of present in the ways that we reclaim that language from sort of the dominant narratives that have imposed slurs and clinical labels and diagnostic sort of regimes onto our bodies that we have had to live up to, right? Sort of like we need to portray the label and we need to embody the label in the ways that the label have been imposed on to us and sort of tagged onto our bodies. In contesting the very uses of the labels, in reclaiming those labels, there is a contestation, right? There is new meaning making. There is a defiance of sort of this idea of a very fixed, immovable, trans-historical identity that disabled people embody at the very different stages of our lives, right? So we contest that by reclaiming language. That's one of the ways in which we do it.
So if you're interested in this topic, and if you dig a little deeper beyond the mainstream portrayals of disability, you'll find Crip culture, you'll find neurodivergent culture, right? You'll find Crip-stemologies, which is a mixture between Crip embodiment and sort of consciousness and epistemology, so ways of knowing from the perspective of crips, right? And people feel offended by these reclamations. Because there is this sort of, like, blank slate application of this new political correctness in this historical sort of like juncture that we are in, thinking about diversifying life as if life and the world and spaces, as if life itself wasn't diverse and diversified already. So there's an exercise to diversify life, and that's done through very specific strategies of stratification and control, and I have argued for the sort of stratification of life around disability in terms of inclusion. And that has maybe ruffled some feathers in the community, in the various communities, and what I'm referring mostly is to these ideas of inclusionism. It is not inclusion; it is inclusionism, which is this form of like, reabsorbing disabled people into like every day mainstream contexts, by way of including them into or including us. What does it mean this motivation to include us into something? It means that we are always already excluded from it. So naturally and organically we are perceived as outside, in the margins, on the side, beyond. So our embodiment, and our expression, and our existence are always already considered out of place. So when we are in space, in community outside with others performing disability culture, which I will tell you a little bit more about, we are reoccupying and reclaiming those spaces for ourselves, and we believe that those spaces are inherently ours. But there is a big narrative, or there has been a big narrative, that seeks to divide human beings, to stratify the human experience, right? According to the ideal of productivity and what bodies can do and what bodies cannot do, and what bodies look like and don't look like, and how they fit or don't fit into this mainstream narrative of the good life, right? And what's the good life?
The good life is having access to a middle class white hetero-normative able bodied existence. How many of us in the world do not fit that? Let me tell you the great majority of the global disability community does not fit that standard. And so what happens through these narratives the reproduction of these ideologies, which are inscribed in the everyday of our bodies, is that they produce systematized and systematic exclusion, right? In a way that it almost becomes sort of the way things are. It is what it is. And so initiatives and alternative projects and alternative radical worlds that are sort of like reshuffling social relationships observed in that way or are understood in that way, of course, are not being recognized immediately in their power and in their sort of push against all of this sort of like normative understandings and normative reproductions of disability as something - as an object-subject of something; as an object-subject of study; as an object-subject of medicalization; pathologization; as a subject-object of inclusion; as a subject-object of bodily control. So there is permanent mediation in the way that disabled bodies interact with non-disabled bodies, and with other disabled bodies, in space and in the world. So our experiences, our material concrete experiences, do not exist separate from those ideologies and those narratives; and those ideologies do not exist in the absolute. They're not whole; they are fragmented and they are contested. So even though historical narratives are always portrayed, as they say, the lion never tells the story or something like that, it is always the hunter who tells the story. There's always being push, push, push and pull; those are power relations.
Power doesn't only come from like an imminent source and just like drops down on us. Power exists in a relationship. So there is pushing and there is pulling. There's push-pull. And those are the struggles that happen around disability and many other marginalized, actively marginalized and under-represented social groups experiencing intersecting systems of oppression, right? There is a push and pull and there is a struggle and there is a fight for meaning and one of those sides of struggle is language. I am very insisting upon that fact. There are people who are doing policy, whom I commend. There are people who are doing direct action, demonstration. I mean look at the people who are, look at the ADAPT protesters who are right now camping outside in D.C. , trying to put a stop to electroshock therapy for people with developmental disabilities, specifically autistic people. In terms of like the controlling of our behavior which is so unnatural and so dangerous and I'm just, for the podcast, I'm just like using this like flying quote marks and trying to like do something in with my inflections to see if it shows up in the podcast because I'm being sarcastic, basically. So, one of the big models that have been given credence and been amplified by academics, but have emerged from grassroots, like everything disability is grassroots. Just think about that. Like the history of disability rights in the first place is grassroots. Like people climbing the Capitol steps, throwing themselves out of their wheelchairs, throwing their crutches, climbing those steps, invading, like sort of occupying, right? Those are people, every day disabled people, who were being intently marginalized from various forms of every aspect of everyday life. And sort of like how disability studies kind of was born out of those grassroots struggles, and became institutionalized, as it so happens that grassroots knowledge becomes institutionalized and co-opted, and sort of reinventing our reincorporated into this wheel of reproduction - not only in terms of like reproducing exchangeable goods. We understand education as an exchangeable good, right, which is a heart ache. But also in terms of like this absorption of knowledge, knowledges, in plural, turning it into this top-down approach to, "Oh! This is like the seriousness of the fact because we have put it in an academic book," right? And I am not whatsoever excusing myself from that, because I am very much a part of it. I reproduce disability as anybody else that studies disability as a disabled person. And let me tell you, as a disabled person I prefer to be studied, by, obviously I want to study alongside somebody, I rather that disabled issues, disability issues are taken up by disabled academics.
Let me tell you the truth that as much as I wish, for instance, that I could go to therapy and my therapist was autistic. You know, it's sort of like entering, and so disability studies is kind of in this strategic infiltration space of like, "let's legitimize our grassroots struggles and like sort of institutionalize them so that they are recognized within the sort of like matrix of dominant knowledge and sort of like ways of producing knowledge that are considered legitimate because they have a seal, because they're accredited", right? And so doing there is a process of separation of disability studies from disability grassroots struggles. Like there's no doubt that occurs. It occurs with anthropology, it occurs with sociology, right? And with many other disciplines. And I'm telling you all this because I want to talk about a model of understanding disability, the disability experience, that was emerged from the work of the disabled grassroots activists in Britain in the 1970s. And they were working together, so the disabled activists who were living in that community with disabled people who were still institutionalized and being brutalized and dehumanized within institutions of care for the disabled. So working in collaboration they started thinking about the ways in which society disables different bodies. There is an active process that happens and that process is called the process of the disablement. So those are given fancy terms, and were brought into academia by disabled British sociologists, drawing from those experiences of grassroots struggles, and brought it to bear on to this model that had prevailed the history of any study of disability. Not disability studies, that's different. Any study of disability about disability on disability without disabled people. And it's known in disability studies as the biomedical or individual model of disability, which understands disabled bodies as inherently individually deficient. So it's an inherent problem of the body. It has nothing to do with the societal circumstances, ideologies, practices, attitudes, institutional practices - I already said practices - institutional approaches to different embodiment, right? Now, disability is just natural organic occurrence and it's a deficit; it needs to be cured; needs to be hidden; needs to be manicured; needs to be prosthetisized; needs to be handled; needs to be observed in confinement, right? So, this has been the tradition, right? The long Western tradition of understanding and managing and administering the disabled body, through a biomedical perspective. That, unfortunately, is the perspective that continues to prevail today, 2018, after forty, fifty years of struggles by disabled people, grassroots academics in collaboration, artists, performers, poets. You name it. There is still this understanding of disability from this deficit perspective. So these academics, like these British sociologists were trying to be like, "look, these people on the ground, they talked about a social perspective of disability which locates the problem outside the body." It is not different embodiment. It is not the different body, "different" - that also in quotation marks - that's inherently problematic, that's inherently burdensome, and that's inherently abnormal, right? It is actually the social structures, practices policies, institutions, interpersonal relationships, that produce disability into a category, a category of deficiency, and therefore, a category of social oppression, in every aspect of life, right? So in doing so, this battle sort of began, right? It was like disabled intellectuals fighting against the rest of the world in terms of these academic traditions and schools of thought that had been totally established, and disabled academics and intellectuals - not even disability studies yet but just like within sociology were like, "look at us, we're disabled, we're talking to you," and the disciplines were like, "you can't possibly be an academic, you can't possibly be an intellectual, because you're disabled. So I don't know what you're talking about," right? So, it's this power relationship and this imbalance between two camps, so to speak. And so it happens that the social model has informed so many of our contemporary struggles. It continues to do so because it brings the idea of disability to bear on the material reality, concrete reality of disabled body, or of disabled bodies, in a way that we cease to exist within this plutonic realm of ideas and narratives and metaphor, because disability is a very useful metaphor, let me tell you for writers, oh my God! It's like the primer, like, "let's go to disability and use all this imagery about collapsing societies through the image of the disabled body," right? In a way as to detach it completely from the realm of material experience, and in doing so, from our lives! From the very experience of disability, from living disability - which was the title of the talk, right? Which I was supposed to talk about from the beginning but I didn't. Because it doesn't matter how many things I write, I will still just like speak from the heart, which I think it's a good thing.
So living disability is embodying disability - which we do; which disabled people do. We embody that thing. We celebrate that thing. We struggle with that thing, right? But in insisting on an erasure of disability and disabled people from producing everyday life and from producing the world, that is why we continue circulate as metaphors, as charity cases that are pitiful. That it's not how we understand ourselves, that is not how we see ourselves, that is not how we represent ourselves. Disability culture: huge depth, vibrancy, richness multilayeredness of experience and deliciousness and just like multifaceted ways of looking at our bodies from a three-dimensional perspective, as opposed to these flat allegories. One of these examples in the Bay, like be proud, is Sins Invalid; it is this performance troupe of disabled artists of color, centering queer and gender nonconforming experiences, and bringing sexuality and sensuality in your face, because the medicalized experience or representation of disability is the perpetual infant body; the non-sexual - not asexual - the non-sexual body, right? That is the mainstream that is completely dissonant with the way we live our lives and we experience our bodies as pleasurable. We experience our bodies as pleasurable. We experience our bodies as oppressed. We experience our bodies as interdependent. We experience our bodies as this huge amalgamation of greatness, of possibility, of hope, outside of this binary construction of the deficit and the perfect body. What is the perfect body? What is the able body? Doesn't the able body need to disable body in order to exist? Doesn't it need to be constructed against, like in tandem? Like how else do you define unable body? Everything that a disabled body isn't is the able body. So we're still needed. Like the able body needs us disabled bodies to reproduce itself in this hegemonic hierarchical way. So this division, like think about the division between normality, quote-unquote, and abnormality, which are both historical; they're constructs. Like abnormality and normality don't just exist in a vacuum of like organicity, like that's just the way it is, things are the way they are. Their white supremacy is just a natural occurrence of the hierarchical...you know? Like it isn't; it is a product of social relations that exist within very specific value systems and ideologies. So what I wanted to do today mostly was invite you to, like, really think beyond the binary. To just really dig deeper and look at the contradictions that exist, like, beyond what we think in, the outside of those binary that are so limiting and are so oppressive. So, I've talked about metaphorical uses of disability, right? Think about the many ways in which disability is represented in literature. There is this amazing book by, the first person that I studied with disability studies, back in 2009. It's a very well-known disabilities studies scholar, David Mitchell, and his wife Sharon Snyder, write astonishing stuff, from a cultural model perspective, which is an integrative perspective. It's of course not the biomedical individual model. It's not the social model. It is an integrative approach to it. And they write this amazing book called, Narrative Prosthesis. And I've challenged my students to try to first catch themselves and metaphorizing the body and what it does. What that does to the material experience of bodies in the everyday. Try to catch themselves, like, utilizing and recurring to the metaphor constantly the metaphor of embodiment, not only in terms of disability in so many ways. Right?
Think about the construct of the hysteric, for instance, how that's used in literature. Right? In a way, I see those iterations of, like, "hysteria", quote-unquote "insanity", "losing control", with representations, contemporary representations, of autistic people. And of how our bodies are so out of control, they need to be controlled. They need to be tamed; they need to be trained, because they fall outside of that norm - normativity. Like if you're here, you have an autistic person sitting in the audience and they're rocking back - which I do a lot. I'd rock, just I can't rock right now because this microphone seems like it's going to hit me in the face, but I'd do many other things. But if there's an autistic person who's like, rocking, and like, "wooh", like super enjoying themselves and walking around, people are going to start being like, "Oooh, that's so disturbing. Like look at my body, it's so irregulated. I'm so irregulated you know. I'm so in control of my body, I'm not like one of those people who can't control themselves, they should not be taken out their homes," you know? Again, sarcastic emphasis. It is this idea of bodies out of place, once again. Hysteric women were also out of place, and they needed to be trained in their behavior. So this literary image that utilize the disabled body give it so much visuality and so much attention in the literary rhetorical world, that then people seem to just see us in that rhetorical. It's like if we're here, they will not engage with us, they will engage with the rhetoricory of disability and the disabled body. As portrayed by non-disabled writers. Poets. Where are we in that? Are we just a narrative prosthesis? Yeah? Another thing that I see so often with my students, and just people in general, that's been like a really rich terrain of addressing this from the perspective - not of a professor who teaches stuff about disability, no; as a disabled professor who teaches stuff about disability studies - is this engagement with ableist language. Every day ableist language. So, yes metaphorical iterations, but in a more sort of, like, every day, sort of casual way of, "Oh, the weather is so O.C.D.", or "Um, that is an insane film". People don't usually think too deeply about the histories that exist behind the usage of these labels and these words. They have a history just as much as the construction of normality and abnormality has a history, these words, that we use so casually and in such arbitrary ways today - "that's crazy", "OCD", "I was blinded by," "I was blind to it", "it was a blind spot," you know, "it's a crutch," "the economy's crippled" - which is not the same as reclaiming Crip culture, let me tell you, it's a very different iteration right there. There is a history, and the history is a history of brutalization. The brutalization of disabled bodies in the creation of nation states, and the separation of bodies and the stratification of bodies, again in terms of who belongs and who doesn't belong. "I mean we can't give citizenship to everybody." We've got to create citizenship in dialectic with non-citizenship. Because then how can citizenship exist on its own. We got to create nationals and immigrants. I mean, otherwise one doesn't exist without the other in this very dialectical oppressive tension, which is also a tension that produces resistance. The deployment of ableist language to create affect among audiences, at the expense of disabled people. You know? So yes, the histories behind these deployments are really torturous; they are real. They are part of a history that's been mostly erased from dominant understandings of the body. And those are the histories of the asylum in conjunction with the birth of psychiatry in the one 19th century; scientific racism; and the systematic production of these labels that would then determine humanity and non-humanity, humanity in sub-humanity.
One, another book by David Mitchell and Sharon Snyder, the people I mentioned before, is called Cultural Locations of Disability. There is that graphic, because they speak a lot of about, just like British sociologists in the social model, they speak a lot about the capitalist order in terms of like, the further stratification of bodies along a line of productivity. So just picture the factory and the assembly line system. So there is this desire for productivity, there is need for productivity that restores value that every part of the process needs to be a cog in the machine. So reproducing sameness is really important, so our bodies become, like, the appendixes of the machine. What happens to a disabled body that does not produce at the rate of capitalism? It becomes ejected. But it not only becomes ejected; it becomes labeled as deficient and inefficient against a system that is totally arbitrary. And it functions on rhythms that are absolutely external to the life of the body, which is a messy, leaky - like Shildrik, this theorist of disability - calls our bodies s "leaky". Meaning our bodies do not fit neatly within boxes. They will spill out of the boxes entirely. For instance, whenever I say I'm autistic and people are like, "No! Come on, you can't be. You're getting a PhD You have access..." No, you know, they don't say, "You have access to speech," they say, "Well you talk." Didn't I just feel completely melted outside of that box that they created for themselves around what autism is and isn't? So bodies are leaky. We leak everywhere. We do not exist. We do exist in material confinement, of course we do, because that's our history, but we also exist in permanent rebellion and resilience. And we exist and sort of like, spill out, spill out of the box, all the time, and that is dangerous. That is dangerous to the capitalist system of reproduction, because we cease to be cogs in the machine. So the creativity that emerges from disability culture - cultures, in plural, because there's many; as many disability communities as there are in the world, there are as many disability cultures - is this, like, threat to the capitalist order of reproduction where we're bringing a different way of living disability. There it is, living disability again. We're bringing a different way of living disability, of embodying and celebrating disability, that people feel so puzzled and baffled by. "Oh, why do these poor people have to celebrate? Look at that, wheel-chair-person...," - because that's how they refer to us - or, "Oh, look at that ahh, poor ahh-," like, what is there to celebrate? I mean, of course within the narrative of like deficiency, and lack, and incapability that people perceive us through, I mean of course, right? I wonder if they ever want to come talk to us and like, experience us through the lens of multiplicity, you know? Like those - I don't know the name in English - but those things that you look through, a kaleidoscope. Like, you put that on and you start seeing the body in its multiplicity and its colorfulness and it's just so amazing. Another thing that is really dangerous about saying, because discourse not only says but also does, is functioning labels. I've got to tell you about functioning labels because I've got to and because I'm autistic. And like, sort of in relation again to this like, sort of creation of a way of understanding autism without autistic people. So it's like coming out from the DSM manual, of course, that's like produced by all these thinkers of difference and embodiment that is so abnormal and apparent, and they need to be tamed. And, again, sarcasm, podcast, they need to be tamed; they need to be contained; and need to be labeled. There needs to be a production of disability alongside ability. I'm repeating that, just to be clear, I want you to take that with you. There is no natural or inherent abnormality in the human, non-human in other sentient being world. Those are categories that are produced and I would love for you to start thinking about that in terms of, like, how you experience not only disability, but different embodiment. So, there is this idea, like, have you heard about the autism spectrum? I know that this is also an idea that's ruffled some feathers within my communities. I happen to think that the spectra aren't just occurring in nature naturally; spectra are just there and they're just like... Spectra are another way of organizing the world, because let me tell you. Do you think about spectra as an infinite set of possibilities? Or do you imagine a point of departure and a point of arrival? Come on, let's be honest, right? There's little disabled, and semi-disable, or not-so-disabled. I mean that's not how we describe ourselves because we're not any one thing; we're so many things at so many different times, and put in spaces and places, right?
So people are fond of thinking about autism alongside the spectrum mentality or paradigm, which in my opinion is another way of stratifying autistic experience. So there is this extreme iteration of autism which is built entirely on a stereotype, which excludes the large majority of autistic people, again, right? And then there is the other side, like think for instance about a very disrespectful representation of autism. Why, because it's not an autistic person, first of all, and because it generalizes and universalizes the experience of autism. It's really rude and negative, and it's Rain Man. Just because I want you to think in terms of a spectrum that is like binary. Think about Rain Man. Think about Temple Grandin. What do you have, what do you have? You have this savant over here, and you have the absolute contrary to that. It does not do a service to either of them. And what happens in between? So people either think that we're all Rain Man or that we're all Temple Grandin. Low functioning, Rain Man. High functioning, Temple Grandin. Those are also constructed around access to verbal literacy skills or spoken language. And, hasn't language been constructed alongside the idea of humanity itself? Aren't we said to be language beings, social beings? Whoever said autistic people who have no access to spoken language don't have anything to say or contribute? And who said that Temple Grandin was always, like, in this like, no meltdowns. Did you see Temple Grandin at home trying to leave the home? Did you see me this morning trying to leave my home and becoming completely frozen at the door, and being like, oh my God how do I leave, I don't know how to leave. So these iterations of like, polarity of bodies, are so, so detrimental to the actual lived experiences and to the actual collective liberation of our bodies and of our experiences. So I see this a lot. I see those binary thinking around disability that is so prevalent and so... I want to see us unexamined among disabled people. And I understand that sort of like the bombardment of imagery in literature, in media, in film, in reality TV, would make you think like, think about Jerry Lewis and the telethon. Wouldn't that make you think that we really need pity and charity as opposed to full access to citizenship rights? And not only full citizenship rights in terms of our civil society participation, but think about the production and reproduction of culture. It is not only a matter of granting us access. Why do we need to be granted access? Why do we need to be included? Doesn't that mean that the majority is including us in something they have built for themselves, in the image of themselves, and that that in and of itself excludes a large majority of, the large majority of people, right? So it's not only about giving us access to, and, like, access to employment, no, included within employment, included within education, included within, included within...
It's about thinking about disabled people as cultural agents, as cultural actors, and as producers of culture. And I'm talking as a total anthropologist right now, which might be a good thing. But I'm just like really concerned with this aspect, like the separation of disabled lives, to see through the lens of like human rights, a human rights framework that is so dangerous in terms of like, it's sort of like, charity undertones. It's like, some group of people that are superior, giving an inferior group of people access to things. And it's not access that is determined or described or produced by disabled people saying this is what we need. No. It is by non-disabled people saying this is what you need. And disabled people are saying, "No, that's not what we need". And abled people are saying, "Yes, that's what you need". "No it's not," "Yes it is," you know? But what's a stake though is material survival. It's not only this like pitted against each other kind of petty battle. Our material concrete survival is at stake when we do not get to determine what our access needs are, but that those are determined for us, you know? And when our lived experience is constantly and systematically mediated. So there's this idea that we exist in this natural enmity - is that a word, being somebodies enemy? Did I just make that up? I love making words up - So this being enemies, we're natural enemies, disabled people are non-disabled people. And so heroic mediators are the professionals, are the therapists, the special education teacher, the speech pathologist, the regional manager, the caseworker, the OT, the PT. This like sort of proliferating landscapes of professionals that mediate our everyday experiences between ourselves and the world. And I'm not trying to say that all professionals disgrace disability. I'm not saying that.
I'm saying that the mentality is one of I will help you because you are not equal to me, and I can see that and I can perceive that. Perhaps not through my understanding of what your body is and does outside of the norm, but because I see the way social structures and social organizing systems are at play. So yes, in many ways there is a genuine well-intended desire to help. It cannot however come at the expense of our own sovereignty over our own bodies and our autonomy. Historically, disabled people's bodies are like public property. Think about it in those terms. We ride BART, which is an absolutely horrifying experience for me as an autistic person. The overstimulated everything about the BART is horrifying for me. But think about BART, and think about a wheelchair user that gets on BART, and so they get on, and they're doing their thing, like they would like be either texting with someone, doing whatever they do in their lives, like they do. And people still stare. And then suddenly, the wheelchair user is positioned next to a,cause there's rarely space for, like people then make space like this like a heroic act of like, "oh yes, we will move away for you", but the wheelchair user is sitting quite close to somebody else on the train and the train stops at 12th Street Station in Oakland. And, you're laughing because you know what I'm going to say maybe. The person, non-disabled person sitting next to the wheelchair user just suddenly uses the chair as a prop to get up. Public property? I mean, I have sisters of course, to tell me, and that I witness, people just coming in touching their hair. Are you public property? I have sisters who are brutally cat-called in the street. So are we inherently public because we inhabit and navigate public spaces? Another one is, the other day I was with my friend Mike, and somebody else, another friend Reed, and so we were hanging out and there were these two people of BART who came and started touching Reed like, "Yes brother, yes," and Reed was like, "Yes, what? Like what's up?" And then you were like, "Why are they only touching me?" Like they came and touched you. So it is this kind of like this modern, or not modern, but sort of like new iteration of hand imposition. Hand imposition is like, within a religious context, okay I won't say it mentioned exactly which context, there was a belief that hand imposition would heal the cripple. And I'm using intentionally this word, please. So we'd heal the cripple. So this seems like a new iteration right, of the hand imposition of, like, "oh brother," right? It's like, "I'm not your brother, don't touch me," all of this, and, the question. The question, so Reed, the same night was like, "Oh, before, when I was coming here, some lady came to me and said, ‘what happened to you son?'" He's like, "Nothing happened to me, I was born with Cerebral Palsy." There is no occurrence. So there is like this idea that disability is only an acquired tragedy in life as opposed to the experience of a congenital birth of someone that's born the way they are, and why would they not want their bodies except for what society says about their bodies. Because we use our bodies how we use our bodies, and then society is like, "No, don't use it that way. No, it's not thin enough, or no, it's not light enough, or no, it's not regulated enough." Right? Train it in so many ways.
The other day - that's the day that we were hanging out - I was presenting at this panel for the movie Gattaca. Did you ever see the movie Gattaca? No? I see faces, oh my god, watch it. It's like a super young Ethan Hawke with a super young Jude Law with a super lovely amazing great Uma Thurman, and it's about genetic engineering. Twenty one year, yeah, disability is like a prop, it's a total prop, it's a, it's like, the movie, the film is so interesting to talk about because it does a lot for disability, politicizing disability, and it also doesn't, so it's like disabled people being like, "We'll politicize this thing," but it wasn't the intention, it was, oh my god, it was a mess. But, so I was at the film Gattaca, at like the panel, and at the end people were like, audiences were like "Okay, so what are we doing, like, have we like, progressed some?" And I'm like, "You know," it's like when people ask me about feminism, I'm like, "Uh, yeah I don't know, have we?" No, but, just thinking in general like, media representation, to be quite honest with you, like as an autistic woman, with privilege as well, lateral privilege - I have tons of it - I'm an academic, I'm sitting here, I get to talk about these things. But as an autistic woman, like, have you like seen Atypical? Not seen it like watched episodes, but have you heard of it? Okay, so is this very near typical actor portraying an autistic actor, through the savant lens? So he's this wonderful doctor, oh, such a talented doctor because he's autistic of course, he's savant. He's like a Temple Grandin version of this doctor and, he's like super socially awkward in dating. It's totally stereotypical. It's like playing us without us. How many autistic actors are there like out there? MANY. Why wasn't an artistic actor cast for that? And maybe the autistic actor would be like, "I don't want to play that. That's not my life, that's not the life of the people I know or my friends."
So in this idea of inclusionism, again, let's go back to inclusionism, is like, oh, people have been complaining about Hollywood representation of minorities. It's not minority-size communities or marginalized, marginal communities. So they're like, addressing those gaps by casting non-minority groups to play us. I mean, isn't that another way to disengage with the materiality of our existence? It's like we only exist on this like contextual plain or film. Right? It's like we're not here. Come on, cast us. Cast us, we've been saying this, cast us. So I'm like, I will not, and this is my closing remark. I said, I do not want to compromise my bodily experiences, my neurocognitive self, akin to many other people that I know in my life who are also autistic or otherwise neurodivergent. I do not want to compromise that for the sake of mainstream representation. I'm not going to be happy and say, "Oh look, they're talking about autism," in terrible ways. Why would I want media representation without me? So I'm going to like sort of invoke like, a disabled elder in closing this, and say, "Nothing about us without us," James Charlton. Go like this, go like this, yeah!
You've been listening to the podcast the CIIS Public Programs. Audio production was supervised by Lyle Barrere at Desired Effect. If you like what you heard you can subscribe on iTunes, or visit our website at CIIS.edu/podcast.
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