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.

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

  1. Access on campuses as currently practiced does seem all of the things you mention imply (paternalist, cold, sparse, dehumanizing). Certainly, it is not participatory (except perhaps in the poorest, most raggedy sense possible), where the community changes in fundamental ways to open access to everyone. In technical communication, a growing movement toward focusing on the user experience in their everyday environment as essential knowledge for design of computer systems and other technologies (which includes access) might provide a useful means for redesigning access to education. Such a redesign would require full inclusion of all members of the community.

    OK… I’m probably digressing at this point. But I am interested in your discussion and would have enjoyed hearing the panel, particularly if they are thinking of theory that can lead to action on campuses. I’m glad not to be in that stressful environment though! Thanks for posting this!

  2. Thank you very much for your posts and your thoughts. I am an occupational therapist who is on the long road of unlearning all that I’ve been taught about those of us who don’t cluster around the norm. Do you have any words of wisdom that I can share with parents (who do not have autism) who have children with autism? Thank you.

  3. I agree with you on these points. I take my 3 spectrum children into events like a bull in a china shop and expect people to accept our place there. And I am pretty sure I have a look that says ‘go ahead, say something, I’m about to go off my nut anyway. It should be on someone who richly deserves it.’

    What I wanted to point out is regarding your picture. That the shoe is on the other foot with regards to my most affected son. Whatever you say about autism may have little to do with him. He is just finding his voice. It is the same as me talking about how autism affects you without consulting you. We all need to proceed without presuming we ‘know.’ I have no misconceptions that he will be ‘normal.’ But I have every hope that his voice will be loud. And true.

  4. Whatever you say about autism may have little to do with him. He is just finding his voice.

    This is discounting and echo backs the “You’re HFA therefore you don’t count” argument that parents use. I am sure your son already has a voice, not the one that you expect from him. But it’s there. I notice the voices of both severe and passing children in the classrooms I work in. They speak in dynamic and not always appropriate ways but I know they are communicating (even if I results with head phones being yanked out of my ears by one student who does it and flaps his hands.)

    You’re right Mel and I are not like your son. I am 25 year old adult and transgender male and Mel is a married woman. I am not a child anymore (as much as the rest of the Autism Community begs to differ) I am still autistic, and my strife and frustrations still echo your kids. I have been held down by my SO while having self injurious meltdowns, I head bang, tear paper up, chew on everything I can grab. Yet what Mel or what I say apparently is discounted because I am not a child and I can hold a part time job and keep a lover. It’s ridiculous, it echoes the same sort of “Not trans enough” rhetoric because I am not on hormones yet.

    I don’t understand this idea that parents can compare their child to an adult and it’s valid.

    1. Bard, I think you responded in a way that assumes a very narrow interpretation of the previous comment. “Find one’s voice” does not necessarily refer to a literal voice (maybe it does in this case; I have no way to know as the poster was unclear) but could simply mean that the child is gaining the ability to express himself and his views/needs. I took this to mean that the poster was pointing out that any one autist cannot necessarily speak for the another… not because of a functioning-based or age-based divide, but simply because individual experiences and responses are different. If we are advocating for freer and more inclusive access, we have to respect those individual differences rather than merely categorize them according to diagnostic labels. Self-advocacy means advocacy for a variety of selves, not just by one on behalf of the many. I am not saying that this is the right way to read this comment, but perhaps suggesting that the degree of virulence in your response was unwarranted. Regards.

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