Aut-ors of our Experience: Interrogating Intersections of Autistic Identity
Jessica L. Benham
Department of Communication, University of Pittsburgh
James S. Kizer
Gender & Women’s Studies Department, Minnesota State University, Mankato
Corresponding author: jessicabenham [at] pitt [dot] edu
Narratives of the Autistic experience are often told, interpreted, and assigned value by people who are not Autistic, allowing dominant cultural understandings of Autism to pervade without substantial inquiry. In academia, a space in which there is little room for Autistic people in the first place, the power of these dominant ideologies is used to minimize our voices, dismiss our concerns, and devalue our insights. Drawing from Spry’s definition of auto-ethnography and using the works of Derrida and Ronell as aesthetic inspiration, we share and interpret our lived experiences to reclaim our Autistic academic identity. We deliberately disrupt conventions of scholarly writing and storytelling to demonstrate that Autistic narratives should and do interrupt, challenge, or even completely undermine academic normativity. We deploy this cripping-up of our experiences to interrogate how Autistic identity is constructed and negotiated in academia. In doing so, we explore avenues to integrate and celebrate Autism in academic spaces so that scholarship in disability studies, critical autism studies, and gender studies can be enhanced.
- Crip theory
The authors wish to thank Dr. E. Johanna Hartelius and Dr. John Lyne for their advice and encouragement throughout this process.
By this point, I was already rather sweaty, among my least favorite things to be. Walking from my apartment to campus to meet the graduate cohort with which I was to spend the next two years of my life was exercise enough, but the inescapable and suffocating anxiety over meeting new people and knowing that my first impression had to be well-cultivated added to the effect of walking outside on an eighty-degree day.
Influenced by the aesthetics of Derrida’s Glas and Ronell’s Crack Wars and The Telephone Book, the style of this piece is intentional; Our experiences have been structured for us, told to us, interpreted by others through a variety of metaphorical and figurative means: Autism as kidnapper, Autism as a disease, Autism: a thing to be combated, Autism: they’re prisoners in their heads, among so many others. Thus, in this space, we crip up, we Autistic up, we reclaim the figurative, the visual, the non-literal as our own.
The bright colors of purple and orange splashed across my view
Twisting my eyes away from the conversation.
I had hearing that felt to me so similar to seeing
Eyes and ears so connected I could not tell them apart,
The purple and orange making exclamations in my ear drums.
The hum of the lights so bright, so vivid, made like bubbles in my head.
A voice intruded into these sensations, quieter than all else yet I had been taught human voices DEMAND ATTENTION.
Autism’s origins are contested,3 Gilbert-Walsh writes, “There are those who claim that the narrative interruption characteristic of deconstruction but the medical diagnosis of Autism Spectrum Disorder was formalized in 1953 is not a silent negation of narrative; discursive constructions of Autism began to unfold in earnest after this point.4 but is rather one narrative voice breaking in upon another. The development of Autism into its current understanding (or lack thereof) hinged on two overarching themes: the gaps in knowledge surrounding what Autism actually is, and the medicalization of it. On this view, deconstruction is a subversive production of interruptive narratives – indeed an exponential multiplication of these narratives.”5 Durig6 and Nadesan7 discussed how most every discipline from psychiatry to education Munro and Belova8 call into existence: “Moments that take the form of breaks in narrative, has its own definition of Autism, wherein bodies unexpectedly find their comportment to be out of line. which effectively renders Autism an ambiguous disability that is political,
Moments in which stories about the world fail,
such that bodies find they can no longer sustain their recessive posture.
Moments in which bodies make themselves present until a new narrative direction is found
There is neither a medical nor cultural model of Autism that accurately defines this label, as no such definition yet exists (Feinstein, 2010).
and a new form of comportment adopted.”
Spry (2001) defined auto-ethnography as “a self-narrative that critiques the situatedness of self with others in social contexts.”9
“If any credence is to be given to these moments, it is clear that circumstances could vary enormously from slipping on ice to falling in love.”10
Of course, I wasn’t actually sweating, as I came armored with high-test deodorant and a moisture-wicking polo, but I was convinced that these people, whoever they may be, would see me as a fat man, albeit a fashionable one, who was drenched in sweat because of his fatness. Indeed, this may have been what they saw, but why should I care?
More potently it would include moments in which anyone might describe their world as ‘turned over’ rather than merely ‘turned around’.”11
According to Spry, an effective autoethnography uses a critical examination of one’s own personal experiences to inspire others to reflect on their own lived experiences.
She said she had a roommate, I wondered how and if I should care. Despite this conspicuous absence of information, She said another person’s mess was frustrating. Autism is problematized,12 I wondered if she knew how messy her words were in my head. deemed a medical concern that necessitates treatment or a cure,13 And then clearly, painfully, she said, “My roommate acts like a child, I find it easier to just treat her like she has autism.” and positioned as an Other in the culture.14 The medicalization of the body, Hayes and Hannold15 and Wardope16 argue, is a system of cultural factors that work together to create disenfranchisement, discrimination, and a breadth of injustices against people diagnosed with disabilities. Langellier17 emphasized the importance of sharing personal narratives, arguing that it “situates us not only among marginalized and muted experiences but also among the mundane communication practices of ordinary people.” (p. 126).
I came to grad school with four national conference presentations and two publications under my belt, so if they sensed my sweatiness, I could just whip out my vitae to shut them up.
My awareness suddenly snapped from the room, from the colors, from the hum, and, as her voice became the only thing I could hear in that moment, my voice retreated inside my head, I could only nod. My face was painted with my discomfort. She, with all the power that comes from not sharing my brain type, could only be unaware as to why. She made excuses to leave, I think, but I did not hear them.
Agency may hinge on passing as neurotypical;
empowerment is only afforded to Autistic people
if they fit within normative cultural expectations.
While passing can be an act of survival,18
it can also be understood as hiding your own humanity
and potentially allowing oppressive ideas about identity to go unchecked.19
To my great pleasure, someone was sweatier than me. And he was already gearing me up for a meltdown just by his presence. Pleasure dismissed. We borrow the concept of the pass from race studies. Dawkins wrote, “Passing is a practice of unifying a fragmented self-identity, a practice in which risk is high and trust is fragile. It is a fundamental crisis of the self which underscores the point that a secure individual life cannot be detached from larger social systems and institutions.” (p. 4) “But it is the department’s job to help me find outside work,” he complains. I see a thirty-something year old man, hear a five-year-old child, and make a clear judgment in my mind that he is not autistic as I am, but rather just an asshole. “I don’t understand why I can’t find a job to help me get through school and no one here will help me.”
In an autistic adaptation of an auto-ethnography, we jointly share our stories, “a perplexity in the face of narrative, our narratives interrupting each other, a perplexity in the face of a story, in the style of our embodied conversations, about narrative that we have always already begun as we struggle to grasp the non-verbal signals indicating another is done speaking but are never able to finish.”20
Dawkins (2005) argued that passing was very much an act of survival. Even in light of such ambiguity and oppression stemming from the medicalization of Autism due to it being labeled a disability, That people could think an Autistic childish, I knew, Autistic people understand Autism as a key part of identity.21 but I had never thought of it in that way, Neurological diversity, or neurodiversity, is just as integral to oneself as gender, race, and sexual orientation.22 had it so sharply brought to my attention that my sensation of all else was driven away.
For advocates of neurodiversity, Autism, then, is part of the natural variations in human neurology and is not deviant, problematic, or negative.23 We rebel against the notion that Autistic individuals are not empathetic, but simply that we express our empathy differently, through the sharing of common experiences in ways which may not always be understandable, or seem well-organized, to a non-Autistic audience. “It’s not the department’s job to find you outside work,” I quipped rather harshly, catching him off guard and attracting the attention of the graduate coordinator.
Kroeger24 furthers that, while passing may seem deceitful, those who pass do so in order to live within an unjust system. In describing his experience, Moran25, an Autistic individual, wrote, “In order to survive in this world we Autistics are expected to pass for neurotypical. In other words, hide who we are.”
The interruptions are spaces of Autistic movement, I hummed.
So much for that good first impression.
of, at times, calming soothing rocking I moved to the music only inside my head
My autistic world and the room in which normative communication was expected suddenly clashed. Autistic agency becomes complicated in light of these understandings of identity.
and, at other times, the rapid excited flapping of hands. No turning back now Neurodiversity and Autistic pride create spaces for Autistics to resist objectification by others in a variety of ways,
Hoping the pain away including understanding themselves as valuable contributions to society26
So I guessed I should introduce myself as Sam
feeling alone challenging stereotypes27
the gay autistic male and reappropriating the term “Autistic” as one of empowerment as opposed to a derogative28
from the south.
Munro and Belova note that there are “ways in which bodies can be said to absent themselves by getting ‘in line’ with social and organizational narratives.”29 Our bodies, our minds, do not follow the lines laid out.
Linton described the experience of passing for disabled individuals: “passing may be a deliberate effort to avoid discrimination or ostracism, or it may be an almost unconscious, Herculean effort to deny to oneself the reality of one’s racial history, sexual feelings, or bodily state.”30
I sat in a circle, willing my body to stay still, feeling the tension in my shoulders as my movement strove to break free, only a small part of my concentration on the classroom discussion that swirled around me.
The discussion on disability in the classroom had me retreated into my protective internal space, leaving my outside to pass for normalcy, I smiled. Many misconceptions and generalizations about disability tossed from classmate to classmate, so casually thrown about, this game of beach volleyball seemed to hold no meaning for them.
No one asked any questions when I stated this exact description. No one acted surprised. Even as each toss of a word was like the ball hitting my face, No one seemed to care. I knew my clumsiness limited my ability to toss the ball back,
Bascom wrote, “Passing as non-Autistic, passing as neurotypical, means that you never get to actually be human. Be a person. You just learn how to get really good at faking it.”31 Bascom continued, “Passing means repressing, memorizing rules, sublimating, jumping through hoops, and turning tricks so we can get the human treatment. It means making is so that when you reveal your diagnosis to someone they ‘never would have guessed it.’”32 Taylor-Parker wrote, “learning to pass took me years of practice with a special method; every time my family went out in public when I was a child, the ride home was a lecture on my failings.”33
Carey used the word passing to describe tensions faced by disabled individuals, writing: “Individuals with disabilities face an environment fraught with contradictions regarding whether one should try to pass as non-disabled, develop disability pride and resist passing, or deconstruct and disregard the binary construction of disability-ability altogether.”34
Samuels furthered, “Like racial, gender, and queer passing, the option of passing as nondisabled provides both a certain level of privilege and a profound sense of misrecognition and internal dissonance … this dilemma can be even more complicated for those with a disability whose symptoms and severity fluctuate widely.”35
Except the aforementioned classmate, who continued to attempt to tarnish my reputation for the remaining academic year. In my mind he clearly was prepared to use my autism for his own gain,
to stop it in its tracks and toss it toward the ground,
but that is irrelevant since he left after the first year and could not possibly compete with my reasoning abilities. After all, I am autistic. I refuse to let you defeat me because of it.
to referee this game, I had not the words.
Except I did,
my words not playing by the rules of this normative game.
No, no one seemed to care that I was autistic!
I WANT, I said, to hear more of the perspectives of people like me, not read the perspectives of teachers who SEEMED FRUSTRATED AND AFRAID of anyone different. I paused.
And this concerned me greatly. Did no one know what questions to ask me? Were they scared of offending me—how could they not realize that I am not easily offended?
My verbal outburst left me no space for retreating, the ball had dropped to the ground at my feet.
Wait, what if they don’t care because there are no resources here to support my autism and I have made a terrible mistake by coming to this desolate tundra? (don’t lie, you know that Minnesota is cold and gross for half the year)
I had always defaulted to non-disclosure, to pretending the ball would always B…O…U…N…C…E off of me.
Two days later, after becoming fast friends with my fellow graduate assistants, I received this email from the coordinator: “Dear Sam, thank you for being open about your autism. Campus resources can be found at these sites, and please let me or another department faculty member know if you need any assistance.”
I picked up the ball, both because I felt pressured to throw it up in the air again and also because I wanted to smash it between my fingers.
So much for a good first impression. I’ll never know what it actually was, and I’ll spend the rest of my life wondering about it. As if it matters.
Fitch argued that disclosure of neurological status I am Autistic, I said, I have strengths, I have weakness (the ball in my fingers became small beneath their weight). is a “process of resistance and renaming is sometimes referred to as ‘claiming disability,’ or 'coming out’ and ought to be recognized as one of the primary ways of signifying relations of power.”36
I walk into GWS.230 Gender, Race, and Popular Culture on one October day, just long enough to become somewhat acclimated to the campus climate and graduate school in general, and I was doing remarkably well by my own standards for success. What, you expect me to appeal to capitalist ableist racist sexist and homophobic notions of what it means to be successful? I’m autistic.
My Autistic-ness is not the problem, the expectations promoted by these teachers are. Crushed like a stepped-on ping pong ball, the conversation halted.
Like Spry, we move between being there and being here, to relive the past and to reinterpret its meaning in the present, but we also move between self and other, not only sharing our own story but seeing how it intertwines, spins, moves, with the story of anOther.
My colleagues reacted slowly, curiosity mixed with respect,
This day, I was teaching the class. Technically speaking, my first time in front of the classroom as the designated instructor for the period. Terrifying, yes, but also thrilling. Before coming to campus, I raved to my morning Starbucks barista about how excited I was for teaching this lesson on autism and representation. I hope he thought it was interesting, because we met up later. Not at Starbucks. Because Autistic people can’t express human emotion or desire, and certainly cannot have personal lives on our own accord. I revealed that I was autistic to the class.
Linton wrote, “It is not surprising that disabled people also speak of ‘coming out’ in the same way that members of the lesbian and gay community do.”37
they seemed to fear saying the wrong thing. McRuer: “come out crip.”38 “When the unexpected ‘takes place’, bodies may need to be soothed, placated, restored …39 My reaction was what I expected from my cohort months earlier … This is when stories come into play …39 Finally, one spoke, I have anxiety, my anxiety isn’t the problem in the classroom, classroom expectations are … Sometimes stories may be required to fill in the moment of interruption …39
Yet, Samuels emphasized the use of “coming out” to describe disclosure of disability is not so simplistic, writing, “When we look at narratives of disabled people about their own coming-out processes, we see the language of coming out is used liberally but often carries very different meanings.”40
… to mask the stall in the chain of events, the gap between essence and existence …39 At least half of the class immediately shared the same sentiment, although most were doing so with their glances of shock coupled with confusion and unmet expectation: but you don't *act* autistic. As if I am expected to aggressively flap and stare into a vacant distance while I teach how to analyze television from a feminist lens. “Passing for neurotypical and being in any sort of social situation requires enormous effort, so I appreciate your recognition of this fact. But next time, instead of telling people that they don’t seem Autistic, why not acknowledge that Autism is different for everyone?”41 … But for us, shifts in stories also suggest a ‘crossing over’ over bodies—an exchange of perspective and parts – in order to accommodate a new plot."39
Autistic people’s agency is contingent on how they perform Autism, which may or may not be within their control.
Despite carrying on with my planned lesson (shocking, I know, to have a plan from which I refuse to deviate—and hey, this time I maintained the control) I became increasingly aware that I was openly attempting to pass as neurotypical and prided my ability to do so, despite knowing that it was/is my autistic identity that foregrounded my reasons ability to be in this space in the first place.
I smiled. Solidarity.
Others admitted neurodiverse status, or claimed they would develop their allyship.
conversation flying like a kite in the air, soaring in movement so different from before.
I taught this lesson on Max from Parenthood. I later gave a conference presentation on autistic Internet activism, and am exploring ideas for my masters’ thesis examining tensions inherent in Curious Incident. My academic focus has honed in on the intersection of autism and gender. But what of myself? I know who I am—check that, I know exactly who I am, what I’m capable of, and where I’m heading in life—but I pass. I pass as someone I am not while firmly knowing who I am, and this permeates my teaching, my very pride, passion, and love. At what point does presence in class, professional pursuit, and personal identity irreconcilably clash? And how many sleepless nights will I ponder how my autism will manifest itself the next day?
We work from the contested spaces between how Autism is understood and how Autistic identity is constructed. We write our narratives using Autistic hands that are scrutinized and regulated by a culture that does not celebrate them.
Another year, another department, different students, and I was read as neurotypical again, an out-of-department FEMINIST PEDAGOGY class in the Gender and Women’s Studies department. The professor bounced into the room on the first day of class, filling the space with her laughter and expressive Southern mannerisms. My reserved soul shrinking within my body, like a flower wilting before a sun that simply beamed a little too warmly for my petals.
The icebreaker activity for the afternoon was an energetic recitation of a promise to engage fully in discussion, where the professor asked us to make eye contact with the person across from us. I, clearly uncomfortable, and the professor calling me out, I disclose. She says, a desire to learn more about other ways of being. Sentiment appreciated. More speakers, I was NOT THE ONLY AUTISTIC STUDENT in the class. I smiled.
And, sometimes, there is a Meeting and a Meaning in Interruption. Robinson argued members of the in-group, or people sharing the identity which the individual is trying to hide, may more easily see through the attempt to pass, positing the existence of two groups of observers: the in-group clairvoyant and the dupe, or the person who is deceived by the pass.42
The spring semester—well, winter semester, as Minnesota does not seem to observe warm seasons—arrived in a flash, and with it came the time for autism to take center stage in my research and teaching. The time for my autism to take center stage. If only I could control what stage upon which it appeared. A good friend of mine in the cohort—closest friend, at the time, actually—was doing his teaching demonstration in FEMINIST PEDAGOGY, a class that was already getting under my skin with a severe lack of structure and completely uncoordinated approach to following the course calendar (read: it changed every week).
“But Sam,” my logical mind tried to reason, “this is the real world now! This is grad school! Adapt! Adapt! Adapt, you self-absorbed fool! It is still school. There is still a syllabus. It is to be followed—that’s why we fucking have it,” Autism remarked, exasperated that we still need to be having this conversation again for the fourth time in the past hour.
My mind does not,
to the normative structures of academia,
too crooked Curled Crimped
to fit the outlines sketched out by,
outlier forced to come out by academia.
And yet, pressured,
prodded to pass, to protect,
pre-scripted scripted life like I was to be scared of,
“Hey Sam, come on up and do your short comedy skit!” he called from the front of the room. Shit, I forgot. His teaching demonstration was excellent. Not my style, necessarily, but good. But how in the actual hell did he not realize that I was already agitated at knowing that he was forcing me to come up to the front of the class and do something that I had NO IDEA how to do, and definitely was not going to understand in the course of ten minutes. In what world was this logical?
One problem with
into passing is no one remembers I might need a little, A LOT more explanation when faced with new terrifyingly unknown normative situations.
No one prepared me for what my prospectus defense would be like because no one knew they needed to prepare me. My adviser told me that the prospectus defense was nothing to worry about, that it was just like a conversation … it was like no conversation I had ever had.
“Pass, man. I have nothing.”
“Nah man, come on up! We’re ready!”
Well, I sure as hell wasn’t. And that was enough to tip the scale far enough into dangerous territory. Now, I had near-meltdowns in class settings before and have been able to get out of the situation with enough time to diffuse the inevitable.
A tiny conference room, too much furniture, too little space. My senses already overwhelmed by a room that pushed itself into my very being, I wanted nothing more than this to end before it began. The lights humming, facing windows filled with too much light to see more than vague, yet distracting shadows, human words struggled to break through the walls I was forced to put up to keep the other noises out. We were theoretically speaking the same language, yet their voices came through garbled, distorted, and my questions came out like attacks, could not separate my defense against the space from my defense of my work.
But this was grad school, “The intersection of our corporeality and education spaces and practices and apparently leaving class because has implications beyond what and how particular bodies learn and engage social, political and intellectual content in and through the classroom experience.”43 your emotions are taking over In other words, pedagogy and identity are not inherently from within the body is frowned upon. rather, they are interconnected, mediated and literally formed (and reformed) through the acts of teaching and learning. How dare the same setting claiming to support me fully The pedagogical body—the intersection of the performance and the performative in educational terrains—is thus constantly under negotiation and sometimes even in hiding, be so adamantly opposed to me especially “in graduate courses or classrooms where performance is unfamiliar and frightening.”44 when things depart my control. Such are the spaces in which our Autistic selves are created, contested, and exposed.
After, I wanted nothing more than to flee, fly to a space where my senses could rest, be soothed. Trapped, targeted by an adviser who knew not the depth of my distress, I tarried, pressured, uncomfortable, I could not go. My adviser wanted to have a conversation, but I could hardly hear and my voice seemed out of my control. He called me unprofessional, told me my tears were something I should control, shamed me for what he saw as a problematic response. He was right; I should have requested accommodation beforehand, yet in that moment, I could not control my very visceral reaction. Tears, trembling, soothing, terrified of touch, scared of sound:
When we enter university spaces, there are attempts to pull Autism from our corporeal bodies. We are expected to check it at the door, a reality that the ever-watchful eye of professors and department chairs monitor without having to even breathe in our direction. Yet, when we cry or leave to escape the mounting ascent to a meltdown, we are reminded that Autism is not only engrained in our being but is also integral to the classroom space. When we make contributions to class discussion or interact with our peers in certain ways, we become aware that Autism informs these maneuvers. When we design curricula, engage students in the courses we teach, and grade assignments, we realize the role that Autism assumed in doing so. We are always already exposed and vulnerable because the hegemonic academy makes it so. Autism and professionalism cannot coexist, apparently, but our pedagogical body enacts both simultaneously. We disrupt the academy just by showing up, even if that is not our intent.
I got up out of my seat, visibly shaken and shaking, almost crying, not knowing where to go or if I would be able to return, convinced that in this moment of distress my entire professional career was nullified. I returned to class about ten minutes later armed with some tissues and a Lipton tea, the closest thing to a comfort from home that I could scrounge from the nearest vending machine. I spent the remainder of class silent and absent, but still present, and still Autistic. Still always Autistic. No one spoke of this incident again.
To be understood, then, we must disrupt. Despite the meltdown-induced misgivings regarding my academic achievements, I applied to Ph.D. programs.
Teaching as a graduate intern in the spring reminded me of my time as an assistant to the same class in the previous fall.
Different people. Different instructor. “Bodies continually remain vulnerable to cultural interpretations…45
Our presence is jarring enough, to be sure Different autism? …Individuals narrating their experiences living within bodies consciously yet liminally defined as “other” make it possible to trace the pervasiveness of marginalizing meanings across daily performances, even those in which potentially stigmatized bodies are interpreted as acceptable, pleasing, and attractive …45 but that alone does not give us the voice we need to be heard. I forget that my autism is expected to present itself uniformly across time and space …Bodies that pass for “normal” until disclosure are often met with hostility …45 despite me growing older, …interpreted as willfully deceitful in their ability to force cultural members to face the blurred boundaries between “normal” and ”abnormal” … 45 more “mature” (whatever the hell that means), and remember when I graduated high school, attending college and beyond, and even learned to drive? …as well as “desirable” and “undesirable”—categories that are communication context specific, not universal.”45
Yes, my life has remained on a static trajectory. Even my Starbucks baristas have stayed the same for twenty-three years.
I call it “my decision to disclose,” yet, in reality, my research gave me no choice but to openly declare Autistic across my applications. One more opportunity to be stereotyped and rejected: possible professors might more question my ability to work well with others and to withstand the pressures of graduate school than they would of neurotypical students.
Salient Autism foregrounds our every context; furthermore, as our narratives suggest, even experiences beyond the academy inform how we enact Autism within it. Our Autistic selves and pedagogical bodies are concurrently co-created, but the presence of Autism itself precedes this. Haraway famously argued that, “bodies are not born; they are made,”46 but we are Autistic! Always have been and always will be. Even if the shapes, performances, and contexts of our bodies (corporeal, pedagogical, or otherwise) change over time, we are Autistic. Even if our Autism itself is molded, reformed, or completely decentered across time and space, we are Autistic. Our Autistic bodies are thus both born and made, existing in a world that neither respects nor offers space for such complexity.
“What if you are the only white person in the room? Would that not mean that you are experiencing something other than privilege because you are in the minority?”
My student’s question caught me off guard for multiple reasons, not the least of which is that I did not expect it to come from her. And while I had come to class prepared to discuss For the Bible Tells Me So, we ended up on a larger discussion of privilege and power. Great, I can demonstrate to my supervisor (also the grad coordinator, also the incoming department chair) that I am capable of going where the class leads me. In studying feminist pedagogy, I developed my own—the gay Autistic fat southerner feminist pedagogy. Time to shine. No, Autism is situated well beyond normative communication Never mind that graduate school induces anxiety and depression (among others) in nearly all, a fact universally acknowledged but hardly decried, held up as a standard that “grad school is hard, yinz” but rarely seen as problematic, meant to weed out the “weak,” provide resistance to the “strong.”
Swain and Cameron wrote, “Having come out, the disabled person no longer regards disability as a reason for self-disgust, or something denied or hidden, but rather as an imposed oppressive category to be challenged and broken down.”47 it cannot be comprehended without delving into crip and contested territories My answer proved to exceed expectations, as my supervisor praised my reaction and response for days after this discussion. That is fantastic, because I remember very little of it. The moment was intense for me.
Nevertheless, despite how it might have impacted my acceptance into Ph.D. programs and how my disclosure here might impact future employment, I know I must be faithful to the ideologies reflected in my research; if I espouse disability pride, I should endeavor to incorporate pride in my identity into my life in practical ways. The narrative we offer here is purposefully chopped up Disabled and proud! Anxious and proud! Autistic and proud! My choice to write a personal statement which reflected these ideals seemed to have no negative consequences other than having to indulge faculty members’ curiosity during my visits to these schools, which is not so much negative as it is exhausting. In fact, I had faculty express to me appreciation for the intersection between my identity and my research, which was affirming. bounced around Teaching, for me, brings about a similar reaction to when I’ve had one too many margaritas at TGI Fridays. I cannot stress enough that I do not drink before class, nor would I even imagine doing so, but in class settings, in the moment, and designed to induce head-scratching I am completely genuine, impassioned, and unhinged. This is completely and utterly terrifying as it is rewarding for the classroom. we wrote our stories exactly as we lived them See, in that moment, from that one completely genuine (and, frankly, totally innocuous) student question, my entire structure I had worked to cultivate unraveled. as Autistic. No longer did I have the control; the students, now focused on my response to that question, were running the show. You’re reading our world as we experience it And with my supervisor's intense stare, knowing exactly what I was thinking and not knowing how I would respond, an important consideration for those who write for and about Autistics as though we are everybody else I knew immediately that I was expected to simultaneously give a well-developed answer while also giving up my control.
My body curled up under the desk, frightened of the outcome, while the students and supervisor listened intently as the words that flowed from my mouth commanded attention, respect, and furthering the conversation. I will go to my grave not knowing what I actually said. I was in the moment. To understand us, you should be disrupted. Autism, my Autism, yielded to pedagogy, my feminist pedagogy, to my moment, and to my core. We should disrupt you. It is arguably the closest I will ever be to giving myself up to another, to completely let go of any inhibitions and give in to passion. Our bodies are not codes to be cracked My coordinator’s analogy for her classes was spot on: class spaces are like coffee dates, then dinner dates, and then… and our narratives are not abstract cripsiderations. well, this class was a special date that I will never forget nor remember. We’re real. Perhaps teaching really is my love, We live. and if so, then BEING AUTISTIC IS MY HEART.
And that last sentiment is cheesy as all hell. I hate horrifyingly overused clichés.
We are. Autistic.
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- Darling, Rosalyn Benjamin. Disability and Identity: Negotiating Self in a Changing Society. Boulder, CO: Lynne Rienner Publishers, 2013.
- Durig, Alexander. How to Understand Autism—The Easy Way. Philadelphia, PA: Jessica Kingsley, 2005.
- Erevelles, Nirmala. Disability and Difference in Global Contexts: Enabling a Transformative Body Politic. New York, NY: Palgrave Macmillan, 2011.
- Fitch, E. Frank. “Disability and Inclusion: From Labeling Deviance to Social Valuing.” Educational Theory 52, no. 4 (2002): 475.
- Garland-Thomson, Rosemarie. Freakery: Cultural Spectacles of the Extraordinary Body. New York: New York University Press, 1996.
- Gilbert-Walsh, James. “Deconstruction as Narrative Interruption.” Interchange 38, no. 4 (2007): 317-333.
- Hamera, Judith. “Exposing the Pedagogical Body: Protocols and Tactics.” In Performance Theories in Education: Power, Pedagogy, and the Politics of Identity, edited by Bryant Keith Alexander, Gary L. Anderson, and Bernado P. Gallegos, 63-82. Mahwah, NJ: L. Erlbaum Associates, 2005.
- Haraway, Donna. Simians, Cyborgs, and Women: The Reinvention of Nature. New York: Routledge, 1991.
- Hayes, Jeanne and Elizabeth Hannold. “The Road to Empowerment: A Historical Perspective on the Medicalization of Disability.” Journal of Health and Human Services Administration 30, no. 3 (2007): 352-377.
- Jack, Jordynn. “Gender Copia: Feminist Rhetorical Perspectives on an Autistic Concept of Sex/Gender.” Women’s Studies in Communication 35, no. 1 (2012): 1-17.
- Jeshion, Robin. “Slurs and Stereotypes.” Analytic Philosophy 54, no. 3 (2013): 314-329.
- Kapp, Steven K., Kristen Gillespie-Lynch, Lauren E. Sherman, and Ted Hutman. “Deficit, Difference, or Both? Autism and Neurodiversity.” Developmental Psychology 49, no. 1 (2013): 59-71.
- Kroeger, Brooke. Passing: When People can’t be who They are. Cambridge, MA: Public Affairs, 2004.
- Lai, Meng-Chuan, Michael V. Lombardo, and Simon Baron-Cohen. “Autism.” Lancet 383, no. 9920 (2014): 869-910.
- Langellier, Kristin M. “Personal Narrative, Performance, Performativity: Two or Three Things I Know for Sure.” Text and Performance Quarterly 19, no. 2 (1999): 125-144.
- Linton, Simi. Claiming Disability: Knowledge and Identity. New York: New York University Press, 1998.
- McRuer, Robert. Crip theory: Cultural Signs of Queerness and Disability. New York: New York University Press, 2006.
- Moran, Robert. “Not Wanting to Pass for Neurotypical.” Quill 102, no. 3 (2014).
- Munro, Rolland and Olga Belova. “The Body in Time: Knowing Bodies and the ‘Interruption’ of Narrative.” The Sociological Review 56 (2008): 85-99.
- Nadesan, Majia Holmer. “Constructing Autism: A Brief Genealogy.” √In Autism and Representation, edited by Mark Osteen, 78-95. New York: Routledge, 2008.
- Owren, Thomas and Trude Stemhammer. “Neurodiversity: Accepting Autistic Difference.” Learning Disability Practice 16, no. 4 (2013): 32-37.
- Reiheld, Alison. “Patient Complains of … : How Medicalization Mediates Power and Justice.” International Journal of Feminist Approaches to Bioethics 3, no. 1 (2010): 72-98.
- Robinson, Amy. “It Takes One to Know One: Passing and Communities of Common Interest.” Critical Inquiry 20, no. 4 (1994): 715-736.
- Rosa, Shannon Des Roches. “Passing.” Thinking Person’s Guide to Autism. Last modified September 14, 2012. http://www.thinkingAutismguide.com/2012/09/passing.html.
- Samuels, Ellen J. “My Body, My Closet: Invisible Disability and the Limits of Coming-out Discourse.” GLQ: A Journal of Lesbian and Gay Studies 9, no. 1-2 (2003): 233-255.
- Scott, Julie-Ann. “Almost Passing: A Performance Analysis of Personal Narratives of Physically Disabled Femininity.” Women’s Studies in Communication 38, no. 2 (2015): 227-249.
- Siebers, Tobin. Disability Theory. Ann Arbor, MI: University of Michigan Press, 2008.
- Silberman, Steve. Neurotribes: The Legacy of Autism and the Future of Neurodiversity. New York: Penguin Random House, 2015.
- Snyder, Sharon L. and David T. Mitchell. Cultural Locations of Disability. Chicago: University of Chicago Press, 2006.
- Spry, Tami. “Performing Autoethnography: An Embodied Methodological Praxis.” Qualitative Inquiry 7, no. 6 (2001): 706-732.
- Swain, John and Colin Cameron. “Unless Otherwise Stated: Discourse of Labeling and Identity in Coming Out.” In Disability Discourse, edited by Mairian Corker and Sally French, 68-78. Buckingham: Open University Press, 1999.
- Taylor-Parker, Larkin. “Passing: How to Play Normal.” Think Inclusive, last modified 2016, http://www.thinkinclusive.us/passing-how-to-play-normal/#sthash.BsQAChKF.dpbs.
- Vidai, Amy. “Rhetorical Hiccups: Disability Disclosure in Letters of Recommendation.” Rhetoric Review 28, no. 2 (2009): 185-294.
- Wardrope, Alistair. “Medicalization and Epistemic Injustice.” Medicine, Healthcare, and Philosophy 18, no. 3 (2015): 341-352.
- Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006).↩
- Rosemarie Garland-Thomson, Freakery: Cultural Spectacles of the Extraordinary Body (New York: New York University Press, 1996).↩
- Steve Silberman, Neurotribes: The Legacy of Autism and the Future of Neurodiversity (New York: Penguin Random House, 2015). ↩
- Jordynn Jack, “Gender Copia: Feminist Rhetorical Perspectives on an Autistic Concept of Sex/Gender,” Women’s Studies in Communication 35, no. 1 (2012): 1-17.↩
- James Gilbert-Walsh, “Deconstruction as Narrative Interruption,” Interchange 38, no. 4 (2007): 322.↩
- Alexander Durig, How to Understand Autism—The Easy Way (Philadelphia, PA: Jessica Kingsley, 2005). ↩
- Majia Holmer Nadesan, “Constructing Autism: A Brief Genealogy,” in Autism and Representation, ed. Mark Osteen (New York: Routledge, 2008).↩
- Rolland Munro and Olga Belova, “The Body in Time: Knowing Bodies and the ‘Interruption’ of Narrative,” The Sociological Review 56 (2008): 87.↩
- Tami Spry, “Performing Autoethnography: An Embodied Methodological Praxis,” Qualitative Inquiry 7, no. 6 (2001): 710.↩
- Munro and Belova, “The Body in Time,” 87.↩
- Ibid., 87.↩
- Alison Reiheld, “Patient Complains of …: How Medicalization Mediates Power and Justice,” International Journal of Feminist Approaches to Bioethics 3, no. 1 (2010): 72-98. ↩
- Sharon L. Snyder and David T. Mitchell, Cultural Locations of Disability (Chicago: University of Chicago Press, 2006).↩
- Meng-Chuan Lai, Michael V. Lombardo, and Simon Baron-Cohen, “Autism,” Lancet 383, no. 9920 (2014): 869-910.↩
- Jeanne Hayes and Elizabeth Hannold, “The Road to Empowerment: A Historical Perspective on the Medicalization of Disability,” Journal of Health and Human Services Administration 30, no. 3 (2007): 352-377. ↩
- Alistair Wardrope, “Medicalization and Epistemic Injustice,” Medicine, Healthcare, and Philosophy 18, no. 3 (2015): 341-352.↩
- Kristin M. Langellier, “Personal Narrative, Performance, Performativity: Two or Three Things I Know for Sure,” Text and Performance Quarterly 19, no. 2 (1999): 126.↩
- Brooke Kroeger, Passing: When People can’t be who They are (Cambridge, MA: Public Affairs, 2004); Lai, Lombardo, and Baron-Cohen, “Autism”; Robert Moran, “Not Wanting to Pass for Neurotypical,” Quill 102, no. 3 (2014): 27.↩
- Julia Bascom, “Anatomy of an Autistic,” Just Stimming, last modified 2011, https://juststimming.wordpress.com/2011/04/05/anatomy-of-an-Autistic/; Amy Vidai, “Rhetorical Hiccups: Disability Disclosure in Letters of Recommendation,” Rhetoric Review 28, no. 2 (2009): 185-294.↩
- Gilbert-Walsh, “Deconstruction as Narrative Interruption,” 329.↩
- Steven K. Kapp, Kristen Gillespie-Lynch, Lauren E. Sherman, and Ted Hutman, (2013). “Deficit, Difference, or Both? Autism and Neurodiversity,” Developmental Psychology 49, no. 1 (2013): 59; Tobin Siebers, Disability Theory (Ann Arbor, MI: University of Michigan Press, 2008).↩
- Thomas Owren and Trude Stemhammer, “Neurodiversity: Accepting Autistic Difference,” Learning Disability Practice 16, no. 4 (2013): 32-37. ↩
- Kristin Bumiller, “Quirky Citizens: Autism, Gender, and Reimagining Disability,” Signs 33, no. 4 (2008): 967-991. ↩
- Kroeger, Passing.↩
- Moran, “Not Wanting to Pass.”↩
- Kapp et al., “Deficit, Difference, or Both,” 59.↩
- Rosalyn Benjamin Darling, Disability and Identity: Negotiating Self in a Changing Society (Boulder, CO: Lynne Rienner Publishers, 2013); Nirmala Erevelles, Disability and Difference in Global Contexts: Enabling a Transformative Body Politic (New York, NY: Palgrave Macmillan, 2011). ↩
- Adam M. Croon, “The Semantics of Slurs: A Refutation of Pure Expressivism,” Language Sciences 41, no. b (2013): 227-242; Robin Jeshion, “Slurs and Stereotypes,” Analytic Philosophy 54, no. 3 (2013): 314-329.↩
- Munro and Belova, “The Body in Time,” 90.↩
- Simi Linton, Claiming Disability: Knowledge and Identity (New York: New York University Press, 1998), 19.↩
- Bascom, “Anatomy of an Autistic,” para. 1.↩
- Ibid., para. 19.↩
- Larkin Taylor-Parker, “Passing: How to Play Normal,” Think Inclusive, last modified 2016, http://www.thinkinclusive.us/passing-how-to-play-normal/#sthash.BsQAChKF.dpbs.↩
- Alison C. Carey, “The Sociopolitical Contexts of Passing and Intellectual Disability,” in Disability and Passing: Blurring the Lines of Identity, eds. Jeffrey A. Brune and Daniel J. Wilson (Philadelphia, PA: Temple University Press, 2013), 142. ↩
- Ellen J. Samuels, “My Body, My Closet: Invisible Disability and the Limits of Coming-out Discourse,” GLQ: A Journal of Lesbian and Gay Studies 9, no. 1-2 (2003): 233-255.↩
- E. Frank Fitch, “Disability and Inclusion: From Labeling Deviance to Social Valuing,” Educational Theory 52, no. 4 (2002): 475.↩
- Linton, Claiming Disability, 21.↩
- McRuer, Crip Theory, 36.↩
- Munro and Belova, “The Body in Time,” 97.↩
- Samuels, “My Body, My Closet,” 238.↩
- Shannon Des Roches Rosa, “Passing,” Thinking Person’s Guide to Autism, last modified September 2012, http://www.thinkingAutismguide.com/2012/09/passing.html, qt. para. 11.↩
- Amy Robinson, “It Takes One to Know One: Passing and Communities of Common Interest,” Critical Inquiry 20, no. 4 (1994): 715-736.↩
- Judith Hamera, “Exposing the Pedagogical Body: Protocols and Tactics,” in Performance Theories in Education: Power, Pedagogy, and the Politics of Identity, eds. Bryant Keith Alexander, Gary L. Anderson, and Bernado P. Gallegos (Mahwah, NJ: L. Erlbaum Associates, 2005), 63.↩
- Julie-Ann Scott, “Almost Passing: A Performance Analysis of Personal Narratives of Physically Disabled Femininity,” Women’s Studies in Communication 38, no. 2 (2015): 246.↩
- Donna Haraway, Simians, Cyborgs, and Women: The Reinvention of Nature (New York: Routledge, 1991), 208.↩
- John Swain and Colin Cameron, “Unless Otherwise Stated: Discourse of Labeling and Identity in Coming Out,” in Disability Discourse, eds. Mairian Corker and Sally French (Buckingham: Open University Press, 1999), 76.↩