But I Never Think of You As Disabled! Accessing Paternalism, Erasure, and Other Happy Feel-Good Theories

I’m currently at the Modern Language Association convention in Seattle. To put it mildly, it’s an overwhelming conference. Yesterday I participated in a roundtable discussion titled “Is Access the New Diversity?” — during which we explored how the field and world beyond thinks about access. What follows is my portion of the roundtable.


My co-panelists (Annette Harris Powell and Kathleen Blake Yancey) have eloquently suggested that what we need is a new theory of access. This much is clear, I think—Access has in many respects become an empty signifier, a shiny buzzword that sounds lovely on its surface level but isn’t fully realized in practice.

My own focus here today is disability and the ways in which access-as-concept has come to function not only as a narrative of remediation, but also as a narrative of erasure. When we consider access from a disability context, much of our scholarship positions access as a project of rehabilitation. (Other scholars have made similar arguments as well; for examples, see Linton, 1998; Palmeri, 2006, p. 55; Porter, 2009; Walters, 2010).

i.e., Access is often conceived as such: There is a set of able-bodied us’s eagerly waiting to rescue a few, rare disabled thems who are in dire need of help. When we help them to access our scholarship, our classrooms, our conferences, our interviews, our break rooms… It makes us feel so warm and fuzzy inside, so glad to be alive, so pleased that we could give something back and enrich their lives with our kindness! Let’s go pat ourselves on the back now, yes? /snark

A white lawn sign that reads FOR EVERY LOCKED MIND THERE'S A KEY TO FIND
An Autism $peaks sign at Ohio State. (gag)

Before I delve further into access and how we might begin to reconceptualize it, I need to admit something here, in case it’s not evident in my tone: Access and I have a troubled relationship. Most nights I go home wishing that access were a tangible object that I could lob across the room, pummel, and then photograph for my Facebook newsfeed. As an Autistic person and disability rights activist, there has always seemed to me a real divide between disabled and non-disabled conceptions of inclusion—the primary divide existing, as Michael Salvo (2001) and others have noted, in the form of disabled participation and representation, or lack thereof (also see Banks, 2005; Brueggemann, 2009).

Let me provide a personal example of what I mean here:

While consulting with a neuropsychologist several years back, the phrase “paralinguistic cues” first entered my vocabulary. More specifically, I was told that 1) I didn’t convey any, 2) I couldn’t discern any, and 3) I might find some hope with intensive behavorial therapy and social skills training.

Last year, the job search happened, but learning how to read nonverbals didn’t. Suddenly, I was awash in a sea of nonverbals, desperately trying to make sense of intensely social, high-stakes situations. Every moment was replete with inner narrations, memorized scripts and mantras and instructions from the ghosts of behaviorists past— Am I looking people in the eye for ten seconds and looking away for five? Am I inflecting my voice and conveying appropriate affect? Am I counting to three between each sentence? What are my hands doing? Am I stimming? Am I ticcing? Am I rocking my body? Am I delivering an appropriately timed to response to How are you?

I relate this story in order to make a point. As I slogged through the job search, innumerable people took up my access plight as an immediate and pressing concern: professors, mentors, clinicians, doctors, prospective employers, random people from the internet—all of these people were rooting for my appropriate Pavlovian responses in interview contexts. (And, unfortunately, I bought into passing, too—I desperately wanted a job.)

But here is the access problem as I see it, and it’s not limited to the job search, nor is it limited to my own experiences:

First, the burden of access was located on me, and my “success” was dependent on my presumed motivation or lack thereof. We place too much burden on so-called “problemed” bodies and too little burden on the profession writ large. Requesting accommodations, for example, is never an easy process for disabled people—it’s a process that involves negotiating disclosure, legal pyrotechnics, workplace politics, and discriminatory assumptions about laziness, intelligence, and human worth.

And, more troublesome, the discourse of accommodation isn’t one of change, isn’t even one of access, I’d argue. When we (as instructors, administrators, and people in/with power) deny accommodation requests, we do so because we believe such things might alter the fundamental nature of our professional spaces. And when we say yes to these requests, we generally do so because we believe nothing fundamental has been altered. But that, to me, is the sticky point: For a field that’s all about changing the fundamental nature of things, we’re really not all about changing the fundamental nature of things.

Second, rarely was I an agent in the process of making things more accessible, more inclusive, more equitable. And, in many respects, forced passivity is the non-stop, lived reality of disabled people. In college, for example, disability services would give me a checklist of accommodations that I could request (but not necessarily receive)—extended time on tests, use of a soundproof room, and so forth. While these services were certainly helpful, they in no way made me feel like a full participant in my own education, never mind a full participant in the larger project of making the world a more accessible place. How did these accommodations value my autistic personhood, value my ways of communicating, moving, and being? How did these accommodations make me feel like I was a living, breathing part of my classes, rather than a special person in need of special workarounds?

An ASAN booth. Featured are two signs, from left to right: NOTHING ABOUT US WITHOUT US and I AM A PERSON, NOT A PUZZLE.
What we need is participatory design.

Third (and finally), the aim of access, much like the whole of behavioral therapy, is to make disabled people “indistinguishable from their peers” (Alyric, 2008). We live in a world that conflates disability with undesirability. It is more convenient that we cease being disabled than it is for the world to become more inclusive of disabled people.

Reconfiguring interviewing practices, or dismantling ableist approaches to classroom management, or reinventing workplace events—these are not undertakings that happen in the name of access. Rather, what’s happening in the name of access is this: reconfiguring disabled people, dismantling their ways of being and knowing, and reinventing them, as best we can, into normate clones.

As I come to a close here, I hope that we can take up some of these issues together in conversation. I especially hope that we might further discuss why and how the twin goals of rehabilitation and erasure are so frequently realized under the bold banner of access. I also hope that we might focus on some constructive possibilities, some ways of re-envisioning access and enacting theory-activism in academic contexts.

As I hope we all know, the predominant emphasis on helping, training, and rehabilitation is a guise for that of erasure. The things I endured in the name of therapy, in the name of training, in the name of interview prep—most had normalization as their end goal. My hand-flapping and lack of eye contact were never valuable communication practices; they were eyesores, symptoms in need of remediation. Paul Collins sums it up well, I think, with the following line: “the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg” (2008).


References

Alyric. (2008). Indistinguishable from their peers. A Touch of Alyricism [Blog]. Retrieved from http://alyric.blogspot.com/2008/06/indistinguishable-from-their-peers.html

Banks, A.J. (2005). Race, rhetoric, and technology: Searching for higher ground. Mahwah, NJ and Urbana, IL: Lawrence Erlbaum-NCTE.

Brueggemann, B.J. (2009). Deaf subjects: Between identities and places. New York: NYU Press.

Collins, Paul. (2004). Not even wrong: A father’s journey into the lost history of autism. New York: Bloomsbury.

Linton, S. (1998). Claiming disability: Knowledge and identity. New York: NYU Press.

Palmeri, J. (2006). Disability studies, cultural analysis, and the critical practice of technical communication pedagogy. Technical Communication Quarterly, 15(1), 49-65.

Porter, J.E. (2009). Recovering delivery for digital rhetoric. Computers and Composition, 26(4), 207-224.

Salvo, M.J. (2001). Ethics of engagement: User-centered design and rhetorical methodology. Technical Communication Quarterly, 10(3), 273-290.

Walters, S. (2010). Toward an accessible pedagogy: Dis/ability, multimodality, and universal in the technical communication classroom. Technical Communication Quarterly, 19(4), 427-454.

That’s just your autism talking (and other phrases that shouldn’t appear in an autism essay)

During my second week as a new faculty member, I was involuntarily committed to the psych ward at the university hospital. I would say that I make this statement against my better judgment, but such a sentiment presupposes that I have better judgment. (Which, according to my ex-doctors, I don’t.)

My commitment had a slow-motion feel to it. As it was happening, I couldn’t believe that it was happening — I was daydreaming, or I was watching a poorly written Lifetime biopic, or I had eaten moldy leftovers that triggered hallucinations, or something, anything but reality. But, no. This was my reality, and my reality soon spiraled into the progressive tense, into something like this:

— They were strapping me down on a gurney.

— They were wheeling me out of an academic building and into the parking lot, onlookers gawking.

— They were forcing me into an ambulance.

— They were dragging me, still on the gurney, into the psych ER, which resembled a TV prison — brisk security guards, cheap wall paint, steel-enforced doors, cameras that aren’t supposed to look like cameras but inevitably do look like cameras. They were dragging me in there. There.

— Soon, they were vigorously frisking me, and they were dumping out the contents of my backpack, and they were treating me like I was a criminal because I carried a bottle of Tylenol and a 3-inch autistic pride button, and they were shoving me, now shoeless and sweaterless, into a doorless room with hard-backed chairs, and they were prohibiting me from making any phone calls unless I did so via speakerphone, and they were threatening me with overnight and multiple-day stays and refusing to let me wear my headphones, and they were mixing up my diagnoses while periodically asking, How are you doing, sweetie? — As if they really cared. As if I were a sweetie.

Before the EMTs bundled me, pig-in-a-blanket style, into the ambulance, my former therapist asked me why being committed was such a “bad” thing. “If you have to ask that question,” I fumed, “then you really don’t have a clue.”

That pre-ambulance moment, to the best of my memory, is when their ventriloquism started. Suddenly, the experts claimed, I wasn’t talking. God, no. That’s your depression talking, they explained. That’s your autism talking. That’s your anxiety talking. Really, it’s anything but you talking.

Hours later, I sat in the psych ward, shaking, rocking, stimming, ticcing — anything to prevent epic meltdown mode.  I was disembodied. Objectified. Powerless. I was freezing, hunkered up against the wall in my new doorless home, watching an eight-year-old kid being forcibly removed from his parents. How do I not headbang? How do I not bite myself? How do they not see our humanity?

I have gotten used to not existing, rhetorically speaking. I study rhetoric for a living. I teach it. I have a PhD in it. I breathe it. Rhetoric is everything and everywhere, many of my colleagues say. The exception to rhetoric’s everythingness and everywhereness is, of course, autism.

I’ve reached a point in my adult life where articles on autism and perspective-taking inspire me — inspire me to commit self-injury, that is. Rhetoric is about audience and autism isn’t, these articles say. Autistic people are mindblind; autistic people are masked by a cloud of social solitude; autistic people are self-centered and shrouded by their neurological misery. I grossly paraphrase here, but not really.

And so, I have gotten used to not existing, rhetorically speaking. I will say something about autism, and someone will assert that nothing I’ve said matters or applies to anything. Because I’m self-centered. Because I don’t have the capacity to intuit other minds or understand others’ life experiences. Because it’s just my autism talking.

How can one have autism and have something to say? Autistic voice is the ultimate oxymoron. If they don’t want to hear it, then we haven’t spoken. We don’t matter because we don’t exist. We’re just a bunch of absent sweeties waiting to be strapped onto their gurneys.

That’s just your autism talking, they respond.

It is weeks later. I’ve been working, shaky and paranoid, scraping by in an already rough semester, a semester made rougher by male orderlies who find sensory overload amusing.

I am teaching a disability studies course, and it’s now November. We’re reading Dawn Prince-Hughes’ Songs of the Gorilla Nation, an autiebiography. I’ve never had a full class read it before, and I approach the class discussion with an excitement that I haven’t felt since my pre-commitment days.

Something transpires in this discussion, a something that jars me. Some of the students don’t think there’s a plot to Prince-Hughes’ book, that it’s too bogged down in details. Some of them wonder whether her autism made her write this way — some of them doubt her intentionality, her rhetoricity, her capacity to understand writing and audience and perspective-taking. In short, they wonder who’s really talking: Is it her or her autism?

I offer this moment not to reflect poorly on my students — my students are students, people who are kind, receptive, bright, and willing to learn. Rather, I offer this moment because it is iconic and pervasive, because students (and faculty, and parents, and clinicians, and, shit, most people) have learned this response from those who came before them. I offer this moment because I’m pissed off at those who taught them this. I offer this moment because, after it transpired, I flashbacked to my commitment and my forced disembodiment. I offer this moment because I am me, because I am an autistic me, because my autism is not a synonym for demon possession. I offer this moment because I locked myself in a bathroom stall and began cutting my leg with my 3-inch autistic pride button.

I recently dreamed that I was forced into a special education class for assistant professors, my 3-inch button affixed to my backpack, bloodstained and visible. This was a waking dream, an unrestful dream, a dream filled with groans and body twitches. The button was how I knew I had a body; the wakefulness was how I knew I had a voice.

But that’s probably just my autism talking.

First-class autistic, second-class citizen

I am running late. Again.

The emails I compose are all the same. I’m sorry for my delay in responding to you, I write. And then I stare at my screen, sometimes for two hours, sometimes for two months, and try to remember my excuse. Why am I late? Which metaphorical crowbar wrenched its way into my mental machinery this time?

Lately, I conceive of my days as a series of perseverative loops. The new job, the new home, the new and utterly non-autistic community. I cannot pry myself from anything. One egg, one piece of toast, and one butter cookie for every single meal. I read each Facebook status update 47 times before and after posting. “Let’s do something together,” a new friend or a new colleague or a new frenemy will write. And then nine days pass, or 39 days pass, and I’m still working on a two-line email response. Perseverative loop. Lather, rinse, repeat.

I can’t remember the last time I ate a vegetable. I’m not distressed by this — I’m more distressed by other people’s distress. Their jokes about anorexia throttle me into monologue mode, and I launch into impassioned rants — sometimes about disability studies, sometimes about feminism, and sometimes about how much I wish the F-word were a tangible object that I could lob at ableist, self-important hacks.

Oh, F-word. Materialize for me now. I repeat this line to myself. 47 times. 47 times.

The days are a blur. I cry most nights, wishing I were somewhere back in time, a time when I could wrench my fingers, rock my body, and speak without inflection. In a bookstore. In public. With half a dozen others who wrench their fingers, rock their bodies, and speak without inflection. I miss this autistic chorus.

A protester holds a sign that reads PROMOTE SELF-ADVOCACY
This.

But I am here, not there. Autistics Speaking Day has come and gone, and here I am — still writing, still perseverating, still ensconced in my words and my tears and my veggie-less existence. My sense and use of time isn’t on par with the mythical norm. I am learning, or trying to learn, to take comfort in my lateness, to interpret my lateness as function without the dys, as function minus the –tio and n‘s. Fuc(k) function.

There are shitty moments on repeat in my head. The colleague who berates me for asking her to repeat instructions. The potential therapist who calls me a “phenomenal woman” for having the “courage” to lead a disabled existence. The internet trolls, plural, who variously tell me that I’m not autistic, that I’m ungrateful, that I lack the capacity to have capacity. The Autism $peaks undergraduates who, in response to me telling them how hurtful they are, claim that I “cannot silence” their “love.”

Perseverative loops, cumulative loops.

What I consider accommodating, they consider unreasonable.

What I consider insulting, they consider complimentary.

What I consider hate, they consider love.

What I consider feeling and compassion and emotion and just plain being in the world, they consider pathology and blight and madness and something just plain worthy of extermination.

And I wake up in the morning, ride the bus, step into a classroom, feign attention with my flat mousy voice and unruly hands. There are lists to make, silences to repeat, latenesses to embrace, F-words to embody. I take this as a lesson in breathing.