Disability/Culture

It’s been a while since I’ve written. In many respects, my blog silence has been a good blog silence. There have been ebbs and flows — negative along with the positive. But I love my job, the students, and the people I work with. I’m mostly trying to figure out how to keep blogging while balancing everything else.

Summer’s ended, and I hope to write here with more regularity again. I’ve also begun re-organizing things on my blog, so there might be some blips with hyperlinks and such for the time being. To start things off, I wanted to post a short video documentary about disability culture, created by The Olimpias. In February, the University of Michigan hosted a three-day symposium on disability culture. It was a really lovely event, directed by Petra Kuppers. The Olimpias, which is the disability performance group that Petra also directs, recently released a 22-minute, open-access, fully subtitled documentary on disability culture and the UM event.

Both Mark Romoser and I are in the documentary. Mark starts off the Aut culture segment around 12 minutes in. The aut culture bits last about five minutes (hooray).

I stim, therefore I am [Loud Hands Blogaround]

I’ve become obsessed with my kindergarten graduation. Initially, the video was painful to watch: I am stimming, I am ticcing, I am moving — in ways that visibly differ from my peers.

But lately, I am resisting passing. When I teach, I talk through and about my stims. I fire my rubber bands across the room, trip over classroom furniture, flap and wrench my fingers, rock back and forth as my elbows grate against the whiteboard. This is me, I say. My body is narrating.

When I first read about The Loud Hands Project, I flashbacked to kindergarten and flashforwarded to my future as a teacher. I imagine a world where my hands roam free, where stimming is simply a part of being — and I created the video below as part of that imagining. I hesitate to call this video a poem (because a poet I ain’t). So, I’ll simply call it a stimfest. A captioned stimfest.

From the Loud Hands website:

The Loud Hands Project is a transmedia publishing and creative effort by the Autistic Self Advocacy Network, spearheaded by Julia Bascom. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website.

Loud Hands: Autistic People, Speaking features submissions by Autistic authors speaking about neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands)

I’m excited about this project, to say the least, and encourage you to read through the project’s website [preferably while hand-flapping]! Stim hard, people. Let your bodies be lively.

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. Erasure at its finest. (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.