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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

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?

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).

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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.

My parents made the mistake of not aborting me. And ABA, CBT, talk therapy, support groups, anti-depressants — none of these things have exorcised my autism. Sometimes, when I go to conferences, self-important parents like to pretend that I’m not really, truly autistic, that I have, in fact, outgrown my autism in the most spiritual and inspirational of ways. Because, honestly, haven’t I heard? The good and faithful autistics all recognize the depravity that is autism and work hard, so tear-inducingly hard, to make their disordered brains and disordered bodies disappear. That my disordered self could still exist… that I even want my disordered self to exist… such a pity. I’m so autistic that I cannot fathom how soul-sucking autism really is.

If I will not make my autistic self invisible, then they must. And if “evidence-based practices” won’t do the trick, ableism just might. So, I’m here providing a few suggestions for further infantilizing me, for facilitating a neurotypical brand of the Second Coming:

1. Remember that, while I may exist physically, I do not exist semantically. Pairing autistic and adult in the same sentence, for example, is a no-no. Other off-limits words include woman, citizen, activist, colleague, and anything with a –sex affix.

2. Although I might be an adult in the chronological sense of the word, stress that I will never be an adult in the developmental sense of the word. There are many ways to assert neurotypical dominance in this regard. You might, for example, correct my use of the words depression and anxiety and replace them with sad feelings and worried feelings. When I present at conferences and seem a bit too comfortable in my empowered adult status, you might knock me down a few rungs and ask me at what age I was toilet-trained. And, every time I remember to bathe, you might write me a 1,000-word email, CC four or five of my family members and/or former employers, and tell me how proud you are of me.

Other infantilizing measures might include, if you’re a soprano or alto, using a sing-songy voice and speaking only in rhyming couplets. But, hey, don’t take advice from little ol’ me. You’re the neurotypical — you’re the adult here.

3. Remind me that I am incapable of empathy and perspective-taking. If I disagree with you, tell me how self-centered I am. Emotionally speaking, I’m forever lodged in the terrible twos, and I’ll just never understand how bad you have it.

4. Emphasize that, unlike real adults, I cannot maintain mutually beneficial friendships and will always fail to meet your emotional needs. Condemn my black-and-white thinking and preach to me about shades of gray. If I pick up on your sadness and attempt to console you — make it clear that you’re not sad, you’re lachrymose. You’re not depressed, you’re bummed out. You’re not upset, you’re very upset. There’s a difference, and I damned well need to learn it. To facilitate this process, draw cartoon faces on the back of your business card and instruct me to keep it handy in my wallet.

This is important shit.

5. Never give up on the messy, imperfectible project that is me. No matter how many times I tell you how cruel you are, no matter how many times I tell you how patronizing you are, no matter how many times I tell you how proud I am to be autistic — keep working on that disappearing act. Remember how glad you are that you’re not some bitter, twisted, ungrateful, disordered half-person like me. Remind yourself that I’m so lucky to have such a wonderful, personal savior like you in my life.

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This post brought to you by a big a move, a new job, and my lack of existence.

I should start off by saying that I’m glad, very glad, that they invited me to attend. Moreover, if they host another institute next year, I hope I’m re-invited. In fact, I hope they they invite a heck of a lot more self-advocates. While there, I was told that the attendance tally was somewhere around 110 people and that only three attendees were autistic. This seems to be par for the course with the autism-centric conferences I’ve attended, unfortunately. It’s not a happy sort of feeling.

Not only were the autistic people missing — so too were the parents. The only parents there, generally speaking, doubled as service providers or professional advocates (e.g., teacher’s aides, psychologists, ASA officers). The sad irony? All of the presenters, to the point of redundancy, stressed how important it is to include family members and self-advocates in “the conversation” — yet there were hardly any family members or self-advocates in this particular conversation.

The highlights of the conference, for me, were Pat Cloppert’s presentation on middle school, as well as the presentation on adulthood by Tom Fish, Benzion Chinn, and Patrick Meehan (the latter two being autistic self-advocates).

What I really, really have been itching to write about, though, was the keynote speaker — Sally Rogers of UC Davis. I knew things would be rocky when, at the start of her talk, she made a shout out to Geri Dawson, Autism Speaks’ Chief Science Officer. (One of our protest signs during last year’s AutSpks walk was: Congratulations, Columbus! You’ve just paid Geri Dawson’s salary. Heh.)

In essence, Rogers stressed the now common refrain about the importance of early intervention. And the neuro-normative biases of this presentation smacked me in the face, minute after minute. Rogers described “deviant” behaviors and “language delays deviance,” and then talked about eliminating “atypicalities” through therapy. More than once, she described autism as having “isolating effects” (you know, rather than mention anything about how a neuro-normative society isolates autistic people because they’re “deviant”), and she also posited that she wants to see “less disability and more function.”

Some of the assumptions undergirding her talk, assumptions that make my skin crawl:

• It is better to be non-autistic than autistic.
• All autistic behaviors (including, but not limited to, stimming, repetition, prosody, ways of communicating or expressing) need to be eliminated.
• Autistic people’s challenges primarily arise from being autistic — this, as opposed to autists dwelling within a one-size-fits-all world. (I’m not saying that autism doesn’t cause challenges. I am saying, however, that representing autism/autistic people as a big bad problem to be eradicated is 1) flagrantly ableist and entrenched in a medical model of disability, and 2) deflects attention away from that ableism. I’m sure I’m saying other things, too. I just haven’t decided what else yet.)
• One can train away autism.
• We need to take as gospel all of the common, dehumanizing ideologies associated with functioning labels, or what it means to be a “functioning” (and thereby more human and desirable) person.

Toward the end of her talk, Rogers showcased several video clips: autistic babies vs. NT babies. And something really disturbing (I think) happened: when she prefaced a video with here’s a typically developing baby, the audience cooed, laughed, reacted happily. When she prefaced a video with here’s an autistic baby, the room grew silent, solemn, non-responsive.

Pop quiz! Which one is disturbing, and which one is TEH CUTENESS OMGBBQ? </humanity fail>

I don’t laugh at babies. Unlike the pope, I don’t kiss babies that are thrown my way. I admit it — babies and I don’t jibe. In that moment, though, I wished I were a baby-liking sort of person — that at least I would have been reacting, laughing, or goo-gooing over the many cute autistic babies.

I don’t think that cute and autistic are mutually exclusive entities. And it’s disturbing to me that service professionals do not find (or behave as though they do not find) those whom they serve to be adorable, cute, beautiful, intelligent, or funny. Unless those whom they serve were to become “more typical,” that is.

At only one point did the audience react positively toward an autistic baby: when Rogers claimed that this baby, because of intensive therapy, was “virtually asymptomatic” and “as cute as can be.” Then the audience laughed.

*headdesk*

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“Melanie,” she writes, and I imagine her doing so in an armchair, a red velvet armchair, this woman enunciating each syllable of my name, if only to make sure I comprehend her—“I hope as we go forward, Melanie, I hope you come to understand that at many levels what does and does not apply to you”—I stop reading, grind my teeth, poke my tongue in a developing cavity, if only to make my wince more wince-worthy—and continue on with her letter. “It’s not meant to personally challenge you,” she blathers, “but are the observations and ways of those with very different life experiences. Other people have different life experiences than you, Melanie, but I understand how difficult it is for you to put yourself in others’ shoes.”

I stop reading. It is difficult for me to fit into others’ shoes. My feet are incredibly narrow size nines, and I often fall out of my shoes—my shoes. And then there was toddlerhood, me walking so feverishly and insistently on tiptoes, my mother recalls, that the doctors considered cerebral palsy! (with an exclamation point) and hurriedly put my legs in casts below the knees, then braces, only to find out that it wasn’t cerebral palsy, that it wasn’t a symptom of anything with a legally recognized name, at least not anything legally recognized in the U.S. until 1995, at least not a symptom of anything other than Melanie being Melanie and what the hell is wrong with Melanie? There are empaths, and then there are dis-empaths—and as a teenager I was pegged into that escapably inescapable designation, that of the autism spectrum disorder, the one that, if you believe the charities, creeps into your child’s room at night and steals her soul, steals her ability to walk flat-footed, steals her ability, as the blathering woman in the imaginary red velvet armchair put it, to recognize that “other people have different life experiences.”

So much of my childhood was a search for an explanation—a search carried out by my parents, pastors, teachers, counselors, and the elementary school kids who liked to beat me up at recess. One day it’s selective mutism, and the next day it’s all my mother’s fault. One day it’s “let’s get a CATSCAN and make sure she doesn’t have a brain tumor,” and the next day my guidance counselor asks if my father has ever touched me. (And me, being ever the literal-minded autistic, says “yes”—is it illegal for fathers to touch their kids?) Once the Asperger’s autism designation descended from the diagnostic heavens, my capacity to empathize was suddenly eaten up by malfunctioning neurons. My capacity to engage in social relations or maintain eye contact vaporized alongside my personality. My capacity to have capacity was called into question. All these discourses, all these incapacities. Discourse about autism, I think, is far more virulent than autism.

In fact, discourse about autism has reached critical mass. Media outlets harp about the so-called epidemic, likening autism to a fate worse than pediatric AIDS, cancer, and diabetes combined. As of this past week, the autism rate has changed from 1 out of 150 people to 1% of the total population—1 out of 91. Not only this, but autism is said to affect mostly boys, the new statistics reflecting an incidence of autism in 1 out of 58 boys. These days, when I read and hear the numbers, when freshmen at my university tell the campus newspaper that these numbers are “so alarming,” alarming enough for them to fear procreation—I think to Lennard Davis’ work on disability and normalcy, specifically, when he describes the entire field of statistics as eugenics. Davis notes, “Statistics is bound up with eugenics because the central insight of statistics is the idea that a population can be normed. An important consequence of the idea of the norm is that it divides the total population into standard and non-standard subpopulations. The next step in conceiving of the population as norm and non-norm is for the state to attempt to norm the nonstandard—the aim of eugenics” (6).

When I am a number—a gendered number at that, and I mean gendered number both literally and figuratively, because I’ve synaesthetically thought of numbers as being gendered since I was a kid—but… when I am a number, I’m a number to be avoided. A number meant to instill fear and alarm. A number meant to warn parents that I could happen to them. A number that signals the dissolution of marriages and other gratuitous disability-induced horrors. A number that borrows its soundtrack from that classic, repeated knife-stab move in slasher flicks. I can see and feel the numbers as eugenics—all too visually, all too tangibly.

But the fraughtness of autism discourse neither starts nor ends with numbers—it involves our very conceptions of autism and its overlaps with gender, involves that tired misconception of autism precluding empathy, emotion, and personhood. Kidnapper imagery abounds in PSAs and billboards; popular nonprofits mourn the loss of the children that never were. And as reprehensible as these mass-mediated representations are, perhaps more concerning to me (out of my own autism-induced self-centeredness?) (I pose that question snarkily) are the professional discourses that affect me, us, you, them—any and all of us who hold some connection to the amorphous numbers. For as much as we’d like to dismiss the autism-as-thief trope as the next of the myths du jour, such myths find their realities in the various professional discourses that surround autism and the numbers and the gender and empathy issues. In medical discourse, autism is disempathy. It is, as psychologist Simon Baron-Cohen notes, a case of the “extreme male brain” (3). According to Baron-Cohen, autistic people are logicians and systematizers—characteristics in supposed contrast to femininity and empathy and social skills. Autistic neurology is so phallic as to penetrate unsuspecting female minds and make male any and every idiosyncrasy. Scholars in the mood for retro-diagnosis take delight in postulating Emily Dickinson was autistic, or that idiosyncratic fictional characters such as Jane Eyre were autistic. While certainly the autism rate remains higher for boys at a 4 to 1 ratio, the key characteristic for all autistics, per Baron-Cohen, is neurological maleness—such that autistic girls and women become doubly disabled: first by a merciless soul-stealer, and then by a chronic gender-reassigner.

I think to all the ways in which I am distinctly feminine, or distinctly unfeminine—or, conversely, more than a matter of mere is, the ways in which my supposed unfemininity is constructed as such, is rendered a symptom of my supposedly more-male-than-female neurology. The letter from the imaginary-armchair woman—the letter where she claims that I lack understanding of experiences outside my own, of minds outside my own. Or the first time I went to a school dance, where I went up to the DJ and requested the Electric Light Orchestra, to which he replied that he didn’t have any Electric Light Orchestra; so then I began requesting bands who sounded like the Electric Light Orchestra, such as Kansas or the Moody Blues, or Jefferson Starship or Styx—and I kept reciting band after band after band until he yelled at me, over the sounds of 90s grunge, to get the hell out of his face. Or, at this dance, when I grew stiff to the touch, to any touch, and while my female classmates discussed boys and shampoo tips and kitten posters, I wanted to talk about how many top-40 songs ELO had in a four-year period, or recite the list of all of their songs in alphabetical order, or rehearse the band members’ birthdates.

But, as alien as I may seem to describe myself, as rhetorically unaware as my sixth-grade self may seem—I’d posit that the disempathy here, this rhetorical construction of the autist as disempath, is ableist. That is, any assumption about lack of audience awareness by default makes an ableist assumption about who an audience comprises—an audience filled with non-autistic people, or parents, or professionals, or statisticians? Are autistic people considered to lack such capacity that they cannot form and function as their own audience?

Perhaps my delving into rhetoric, writing, and the troubling of audience seems a stark shift in tone here. But as a writer and an autistic and a woman, it doesn’t seem this way to me. The transition seems so natural, not stark, and I’m not even sure that I need a transition, that I need to create some turn-around phrase or some three-point thesis statement that outlines the whole of what I’m saying, what I’m writing. And for this, a compositionist who likes all things neon and 80s might pull out her copy of Linda Flower and start droning on about reader-based prose and cognitive immaturity, what Ann Jurecic referred to as egocentricity in her 2007 article in College English, called “Neurodiversity.” Jurecic’s piece is what I’d label the trademark autism piece in the field of rhetoric and composition, at least, it’s certainly the most well-known, is one of the first if not the first, and it’s so normatively organized, with lots of transitions and other so-called readerly cues. As Ann Jurecic labels autistic writer and scientist Temple Grandin as mindblind, I can’t help but wonder about my own signposting or lack thereof in the essay I read now, how things make so much sense to me but may very well make no sense to you, as if my words here float and crumble, a style begging for an analogy to my strained ways of making and maintaining eye contact. I think to Jurecic’s comparison of Grandin’s edited and published book versus Grandin’s unpublished essays on her web site—a comparison Jurecic uses to argue that Grandin very much lacks audience awareness, that any semblance of organization is likely attributable to heavy editing on someone else’s part. Jurecic writes, “Grandin, of course, is not a college writer; she is a professor whose job requires her to write frequently and well. Her writing is ‘autistic’ in large part because, even after she has written six books and dozens of articles, she still cannot consistently define a line of argument, guide a reader from one point to the next, or supply background for references that will otherwise be unclear” (429).

I should here note that I haven’t hired anyone to do heavy editing on this essay—as much as I may have needed it. I haven’t run this essay by an advisor or committee member. I haven’t visited the writing center, nor have I discussed potential revision strategies with a disability services counselor. I’ve only shared it with the mirror, reading off words in my own eye contact-less, male-but-not-really-male-brained way.

What strikes me about Jurecic is her reliance on Baron-Cohen, who has also researched and written quite prolifically about autism and mindblindness—that is, the supposed inability to imagine the mental states of others. Despite autism’s postulated male, logical influence, she describes the essaying of autistic writers as having an “unfamiliar logic that is challenging to follow” (43). She also notes of autistic writers that, “Clearly, an inability or limited ability to theorize other minds, as with egocentrism or limited empathy, would make communication a challenge” (426). And here I stop and revisit an earlier point, perhaps in my own desperate attempt to mimic good essay conventions, perhaps in my own frenzied manner of transitioning from point A to point Q. Such a stance, that of grounding autistic ways of knowing and expressing in terms of unfamiliarity, inability, challenges, mindblindness, disempathy, limitations, and other items mired in deficit—such a stance leads me to think that some of these autism PSAs need to be revised, to inform parents that autism steals a person’s ability, as I here unfairly quote Jurecic, to “define a line of argument, guide a reader from one point to the next, or supply background for references that will otherwise be unclear” (430). It scares me that scholars and peers in my field have taken a Baron-Cohen turn. It scares me that my peers and professors and students might perceive my ways of knowing, being, and expressing as misfiring neurons, as disempathetic illogicalities. Such deficit-laden rhetoric makes little to no room for theories of neurological difference, makes no room for disability studies, where societal barriers are more disabling than any form of bodily difference.

As Susan Wendell writes, “We need a feminist theory of disability…Disability is not a biological given; like gender, it is socially constructed from a biological reality. Our culture idealizes the body and demands that we control it” (260). I need only think to Tony Atwood to see the relevance of Wendell and other disability theorists—not to mention feminist theorists—to grasp how unquestioned matters of biology go in matters of disability because, as Simi Linton notes, disability is so often conceived of as that “atypical experience of deficit and loss” (5). Attwood, arguably the most well-known Asperger’s specialist in the world, has recently taken to writing about the under-diagnosis of autism in girls and women. He describes such girls as being able to “pass” more fluidly in day-to-day life because they possess certain positive, womanly qualities—unlike the stereotyped representations of the screaming, aggressive autistic boy, autistic girls are more likely to be quiet and “passive” (3). Attwood also contends that neurologically typical girls are more likely to be “maternal” and take autistic girls under their wings and help with social skills (5).

What I find most pertinent about Attwood to this discussion, however, is his embrace of Baron-Cohen’s concept of the extreme male brain. While discussing how autistic individuals have obsessions, or what he terms “special interests,” Attwood maintains that most autistic girls have “typical” girl interests such as kittens or unicorns—but the unrelenting intensity and rigidity of their interests (that is, the detached and weirdly logical male expression of their interests) is what sets them apart (5). A “typical” girl submits her dolls to mock social situations such as dating or going to the mall. An autistic girl lines her dolls up in alphabetical order, or by height or type, and sits in her room for seven hours while observing the flaws and curves of Barbie’s plastic figure.

Where to go with all this—this assumption that autistic people are inherently lacking something, this assumption that autistic women are somehow less than women because of their neurological wiring, this assumption that autistic writers lack audience awareness, when, in reality, autistic people are excluded from most every audience one could even think of, so what practice would we have anyway in imagining the mental states of others when everyone else so wrongly presumes to know our own mental states?

I think to autistic writer Jane Meyerding, who identifies her autistic self as genderless. She writes, “My intellect makes me a feminist. But my gut, my feelings, my self-awareness remain stubbornly and radically un-gendered—at least in the terms of the culture that surrounds me” (157). And: “When people perceive me as aloof, they are sensing an absence of emotional availability. It’s unwomanly of me, in traditional terms, to be the way I am. In feminist terms, it’s un-sisterly. I just have to accept that, for this autistic, it’s normal” (169).

I’d like to think that feminist approaches to disability—that is, any approach that considers social and cultural constructions of difference, rather than neurological imperatives—would not render the autistic woman as un-sisterly or unwomanly. I’d like to think that I could call myself autistic and not be considered unempathetic or mindblind, as lacking in some core feminine trait (as if there exists a checklist of core feminine traits). I’d like not to get letters from mothers of autistic children that patronize me and my approach to the world, and I’d like not to think of such mothers as occupying red velvet armchairs, because the kitschy image of red velvet alone makes me want to gag. I’d like to think that autism organizations at my university and in my city wouldn’t present autistic individuals as lacking humanity, as having a condition that has taken something intrinsic away. I’d like to think that, as my title suggests, autistic women and autistic writers not only exist in space and time, but also exist in categories that are not centered around deficit, loss, and mystery.

The papers for the two small conferences have already been written for the most part — they were portions of other projects, things written for past classes and so forth. So — two things less to worry about, I suppose. But four seems like a rather big, intimidating number right now.

I’m starting to get excited about CCCC (Conference on College Composition and Communication), which is the first conference in my slew of conferences. I’ve never been to CCCC, but from what I gather, it’s absolutely huge. And it also happens to be the big conference for my field. So, while the bigness of the conference (as well as the prospect of public speaking) have throttled me into anxiety mode, I am looking forward to attending sessions, some of which concern autism and rhet-comp. I’ve already begun scheduling my days in Excel.

My CCCC paper considers telepresence as a metaphor for autistic bodies. Typically, telepresence refers to telecommunications and the idea of virtual presence (or virtual reality): for example, when talking with someone on the phone, or even via IM or video conference, there are moments when the other person seems really there, even though they’re only virtually there. Lev Manovich, in The Language of New Media, describes telepresence as a sort of anti-presence. This whole “there but not really there” concept seems very applicable to disability when applied to issues of passing, of visibility versus invisibility. In describing the operative functions of digital media, Manovich maintains that “…telepresence can be thought of as one example of representational technologies used to enable action, that is, to allow the viewer to manipulate reality through representations” (165).

In light of Manovich, I analyze the ways in which those considered to have high-functioning autism are authored into enacting normalcy, a virtual and imposed identity: in what ways do professors regulate their students’ compositions into texts of normalcy, texts of autism, texts of defense? How does disclosure affect one’s tendencies—both bodily and rhetorically—toward (in)visibility? How do these telepresent masks resemble “good” writing or speaking?

Telepresence isn’t a perfect metaphor for the “autistic condition.” But the idea of putting up a virtual, communicative front in order to “pass” for NT, the idea that this metaphorical, bodily telepresence is often a forced thing — and the ways in which autistics are made to feel that this telepresent identity is “right” or “necessary” or “desirable” — bothers me, and I think it warrants exploration. And a metaphor of telepresence is certainly more adequate than the stupid puzzle piece. This metaphor actually considers how others (NTs, in particular) construct autism and autistics. The telepresence metaphor doesn’t blow off autistics as profound mysteries who are short a few cognitive pieces. At least, that’s my take, anyway. 

This was very uncomfortable for me, as are most conferences, I suppose. This discomfort, however, stemmed from something different — it wasn’t simply a matter of my unease with speaking and socializing. Rather than positioning myself as someone with “expertise” on a subject, I was positioned as the beneficiary of someone else’s expertise. Rather than positioning myself as an academic invested in a particular line of inquiry, I was positioned as the line of inquiry itself. And it was really, really weird.

Jim Sinclair, one of the founders of Autism Network International, coined the term “self-narrating zoo exhibit” to describe the role spectrumites are frequently squeezed into at NT-dominated autism conferences: that of the weirdo, that of the puzzle, that of the walking-autism-answer box. This role resembles not merely that of a freak, but that of a freak who is obligated to answer every question that comes his way, no matter how personal or ridiculous.

In the days prior to the conference, I began to worry that I might be construed as the panel’s aspie specimen, the magic eight-ball of aspiedom. My ten-minute task was to describe the challenges that I encounter as a woman with Asperger’s and how the women’s group has been helpful. In going forward with speaking, I had to continually remind myself why my presence at this venue might be useful, might be important: there are very, very few support programs for adults on the spectrum and even fewer for women on the spectrum. Moreover, as Amanda Baggs describes, some questions are OK questions — I’d rather parents seek answers from spectrumites than from celebrities, DAN!, or Autism Speaks.

Despite the potential positives, I was very queasy about all of this, about how I would be treated and represented, and even my walk across the convention center parking lot heightened my nervousness: never before have I seen so many puzzle bumper stickers so thickly concentrated in one geographical location. So much of this event was a question of audience, an audience against which I felt very, very alien. And as much as I want us/them binaries to be broken down — NT/autistic, aspie/autie, PWD/TAB — I felt like a neon them for a day.

Yet, despite my feelings of foreignness (which, to be honest, I’ve felt since my earliest memories), the panel wasn’t psychologically devastating for me. It was largely positive. I inadvertently did something smart in my presentation: as I was discussing some of my academic/vocational challenges, I mentioned how every time I attend a conference, I get depressed because I can’t socially navigate, and I hate the Q&A sessions at the end of presentations because, inevitably, someone asks me something for which I haven’t scripted a response, and spontaneity freaks me out. My railing against questions, according to a fellow grad student in the audience, kept NTs from asking me questions. If I’m right about this audience-empathy thing (which would be nice — being right is fun), then perhaps NTs need to be led by the hand as much as aspies and auties do when it comes to entering a discourse that is foreign to them: how else are they to know of their faux pas?

(Of course, conversely, by only asking questions of the “experts” on the panel — social workers and a psychologist –  the audience arguably cared less about autistic perspectives and more about NT perspectives on autism. However, the fact that my feelings were respected astounded me: I was prepared for a day of autie trauma. I only received one question, which was from an autistic woman/mother, who asked if I was on a certain Yahoo listserv. A very easy, yes-or-no question.)

I have been lately wishing that I could do the same thing at rhet-comp conferences that I did at NATTAP. While post-presentation discussion sessions are certainly useful and sometimes necessary, they’re so unpredictable. I realize that everyone, on some level, fears being asked a question they don’t know the answer to. That’s human. However, I additionally fear getting questions that I do know the answer to: sometimes my brain just shuts down, especially when I’m up front, where most of the fluorescent lights are. There’s so much to think about: I have to feign eye contact at several junctures, and I have to very consciously think about my volume level, and I have to keep my hands civilized, and I have to worry about “conversing” with an unpredictably sized audience. I like the idea of having an e-chat discussion after a conference presentation. But that’s probably unrealistic.

Many listservs have recently posted the CFP for Autreat 2009, which I’ve never attended. Upon reading about the history of this conference and ANI, I was struck by Jim Sinclair’s description of “interaction badges”:

Even verbal autistic people are likely to have difficulty being verbal all the time, especially under conditions of sensory overload such as are likely to occur at a conference. Many of us had found ourselves struggling with speech shutdown at conferences. Non-autistic people would want to talk to us, when we needed to be left alone for a while. Of course we could always leave and go off somewhere by ourselves; but sometimes we were still interested in listening to presentations or being around our friends, even when we weren’t up to having interactions. After discussing these situations on ANI-L, we created color-coded interaction signal badges. These were plastic name badge holders, with a piece of red paper on one side, and a piece of yellow paper on the other side. People needing to restrict interaction could wear a badge with the red side facing out to signify “Nobody should try to interact with me,” or with the yellow side facing out to signify “Only people I already know should interact with me, not strangers.”

The interaction signal badges were easy for autistic people to use, and easy for both autistic and non-autistic people to understand. We still use them at Autreat. In 1997 we added a third color to the badges, in response to a concern expressed by an autistic person who was planning to attend her first Autreat, and said she sometimes wanted to interact with other people but had trouble initiating an interaction. We added a piece of green paper to signify, “I want to interact but am having trouble initiating, so please initiate an interaction with me.”

I especially relate with the green badge (though there are certainly times where I wish I had a big yellow one). I’m terrible at initiating conversations with people. However, I’m probably worse at sustaining conversations. When I first started graduate school a few years back, one professor told me he had no clue that I was paying attention until he read my writing because, in class, I was very non-responsive and hardly looked at him. So maybe the addition of an orange badge would alert conversants that the badge-holder is listening and/or enjoying the conversation, even if she appears bored or mentally out to lunch.

I can dream, right?

On Friday, November 21, I hopped on the #2 bus and headed toward the convention center, on my way to see one of the keynote speakers at the NATTAP Conference—Temple Grandin. I held a name badge in hand, a badge that wasn’t my own, largely owing to the fact that I was too miserly to register for the conference. Once I walked through the front doors, I pretended to be Jeff Siegel [an Aspirations facilitator], and no one noticed the misnomer, excepting one creepy guy who said “Hi, Jeff” as I walked past a table in the exhibition hall. After that point, I removed my fraudulent tag and moseyed into the auditorium.

The session began nearly 15 minutes late, and then started off with four speakers who, though I’m sure were important, relied entirely too much on PowerPoint and monosyllabic words. I tuned them out, instead fascinated by the lighting effects in the room. The stage had two large fiberglass panels on the ends, each of which slowly turned different colors, hushed reds and purples and greens. Center stage and affixed from several light fixtures hung a large cardboard globe, and descending from the middle was a strange shape, the symbol of the conference—I spent about twenty minutes debating whether it was a puzzle piece or a person that looked like a puzzle piece. Alas, I could wonder no more, as suddenly Temple Grandin was called onto the stage, each of the boring people filtering back to their front-row seats.

I’ve never seen Grandin speak, though I have read several of her books and have watched some of her presentations on YouTube. Calling her energetic would be an understatement. Her talk about autism spectrum disorders had the fervency of a televangelist, minus the damnation and tithing stuff, if you can imagine that. For those not familiar with her work, Grandin was born in 1947 and sported all the symptoms of full-blown, classic autism. Today, she’s a professor at Colorado State and has designed half of the facilities for livestock that exist in the U.S. And, according to her blurb in the NATTAP program, she’s arguably the most famous autistic person in the world. HBO is currently filming a movie about her early life, with Claire Danes playing the role of Grandin. As Grandin discussed her visit to the Hollywood set during the keynote talk, she mentioned how she cared less for meeting Claire Danes than she did for playing with all the neat electronic toys on the set.

What I really enjoyed about Grandin’s talk was her perspective on ASD—a focus on strengths rather than deficits. Sometimes I read autism-related articles or watch documentaries on Asperger’s and walk away thinking “woe is me,” wondering why I even bother to tie my shoes in the morning or trudge through the existential quandary that is life. Grandin described three thinking types that generally typify persons with ASD:

1. Visual thinkers (poor at Algebra)
2. Music and math thinkers (love patterns)
3. Verbal fact thinkers (poor at drawing, tend to be the aspies who love History, fact-finding, and/or language-based subjects)

Grandin continually emphasized that “eccentric” is OK, that not everyone should be “plain vanilla,” that autism is variable, that no one on the spectrum is of a cookie-cutter mold. The only way to help insure success of those on the spectrum, she argued, is to drill social skills into them at a very early age and in very specific ways.

Grandin claimed that there is a big difference between old and new aspies, that aspies of previous generations have tended to be more successful in jobs and relationships because rules and manners were more structured in the 50s and 60s. She uses herself as an example—her success, she maintained, dealt largely with her mother being very specific about what qualifies as rudeness. “Neurotypicals,” she lamented, “are too vague today.”

Grandin concluded a bit prematurely, mostly because the boring people at the beginning started late. She suggested that practitioners learn to better identify the strengths of those on the spectrum and capitalize on those strengths for employment. She also stressed that many people with ASD “are what they do.” After her talk, she sat at a table in the exhibition hall and signed books. In true miserly fashion, I brought my tattered, heavily used copy of Thinking in Pictures, an ex-library book that I splurged three dollars for on half.com. Grandin signed it and made a comment about the old library stamps. I told her that I was a poor grad student surviving on Ramen Noodles and my professors’ mercy, and she seemed to understand.

Photographic evidence: Grandin’s signature