—-

“Melanie,” she writes, and I imagine her doing so in an armchair, a red velvet armchair, this woman annunciating 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 to recognize, as the blathering woman in the imaginary red velvet armchair put it, 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.

Perhaps the one thing I like most about Ohio State is that I’ve rarely had to physically stay in a library while here. I’ve been able to search for and reserve books online. I simply dart into the science and engineering library, grab the book I’ve digitally reserved, and dart out. Very little interpersonal interaction involved.

Libraries, at least at the educational institutions I’ve attended, have always involved lots of people and lots of distractions. And though reading rooms tend to be quieter than cafes or street corners, the silences are overwhelmed with noise — pages turning, clocks ticking, coughs languishing, air circulating — and the visual stillness is overwhelmed with eyes and other unreadable body parts.

Nonverbals abound in libraries. Nonverbals and I don’t always get along.

Upon learning that 1) the library was open today and 2) hardly anyone was there, I ventured out. I managed to stay for nearly three hours, probably a record of some sort for me. I went there to work on my dissertation prospectus, which is ending up a multimedia project. Instead of sifting through book-like things, I had aimed to record photos, video, and ambient noises. Eventually, I located a suitably lonely table, turned around, and found myself parked in front of several rows of the Journal of Mental Deficiency Research. (Which was right near Autism, the journal.)

I defaced some scholarly journals with post-it notes.

Journal of Mental Deficiency Research, with a post-it that says 'pathology (to the max)'

In one of the "enlightening" Autism articles from 2003, an author mused about an autistic child's "entry into the domain of symbols" (a.k.a. so-called normal speech, you know, the only kind of symbolic thing that's worthy of anyone's attention). I went notecard-happy on several cognitive studies/psychology periodicals, including the Journal of Traumatic Stress. DX that, symbol arbiters.

This collection was in dire need of some pathologically ineffectual charity. And I had no shortage of pity-laden bandaids.

Recycling that tired idea of there being one "true language." Because goodness knows that what autistic people use isn't language, isn't even symbolic.

Try harder: Advice for researchers everywhere, myself included.

DSQ is an interdisciplinary journal, and we’re looking for (m)any disciplinary perspectives on the issue’s theme. So, please consider submitting, and please distribute this call widely! And, of course, if questions arise, feel free to contact us (see below).

Call for Papers for a Special Issue of the Disability Studies Quarterly: Disability and Rhetoric

The profound insight of Disability Studies is its conception of disability as a representational system rather than as a medical problem, a deficit, or a personal tragedy (Thomson, 1997). In this view, disability is regarded not as a settled physical or cognitive fact but rather as a discourse, a collection of figures and narratives, tropes and topoi, speakers and audiences that suggest identities and positions in the world to those participating in the discourse. The analysis of disability, then, necessarily goes beyond medical and psychological perspectives to consider how words and other symbols may be used, recalling Kenneth Burke (1969), by human agents, “to form attitudes or to induce actions in other human agents” (41). Disability, to say it another way, is inherently rhetorical and may best be understood through methods of rhetorical inquiry and analysis.

To that end, a special issue of the Disability Studies Quarterly (DSQ) will address the topic of rhetoric and disability. While Disability Studies has revealed the essentially discursive nature of disability, rhetorical theory and analysis promise to further the discussion by contributing a unique set of methods, terms, and concepts. Rhetorical method is a particularly important concern, and we are especially interested in essays that illustrate diverse methods and modes of rhetorical analysis as these relate to disability. Essays may analyze the workings of rhetoric in printed works about disability but also in other media, including film, music, web-texts, graphic novels, and other forms of sound and image.

We define “disability” broadly to include physical, cognitive, and intellectual difference. The ideal essays will enrich understandings of the relationship of rhetoric and disability, but will also serve as models for future scholarship in studies of symbolic representations of disability. Potential issues or topics may include, but are not limited to, the following:

• Disability as, in, or and rhetoric
• Disability and or as trope
• Disability rhetorics in the media
• Disability rhetorics in the classroom, workplace, or home
• Disability rhetorics and narrative
• Disability and digital rhetorics
• Activism and rhetoric
• Disability and audience
• Disability and rhetorical appeals, the rhetorical canons, and/or the rhetorical triangle
• Disability and legal/governmental rhetorics
• Rhetorics of accessibility
• Rhetorical constructions of disabled identity

Timeline
Queries or abstracts sent by February 1, 2010
Full submissions due July 1, 2010
Final revisions due November 31, 2010
Publication in the Winter 2011 issue of DSQ.

Submission guidelines

• Manuscripts must be in the form of a Word document and:
• Have a cover page that includes the author’s name, institutional affiliation, and contact information
• Have an abstract of 100-150 words
• Be between 3,000-6,000 words in length (approximately 10-20 double-spaced pages)
• Provide full references for all citations
• Include a brief biography of the author (50-100 words)
• Follow DSQ guidelines: http://www.dsq-sds.org/about/submissions#authorGuidelines

Please send queries and submissions to John Duffy (jduffy@nd.edu) and Melanie Yergeau (yergeau.1@osu.edu).

References
Burke, K. (1969). A rhetoric of motives. Berkeley: University of California Press.

Thomson, R. G. (1997). Disability, identity, and representation: An introduction. In R.G. Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press, 5-18.

Yet, I’ve used aspie here anyway. I’ll explain why.

I prefer to be called autistic, for a variety of reasons. I don’t see Asperger’s as “separate” from autism, nor do I see Asperger’s as being the next and better form of human evolution (ugh), nor do I think that people with Asperger’s DXes are superior/more intelligent/cooler than those with other autism labels (more ugh). As I’ve written previously, these diagnostic labels are, in a large way, socially constructed entities that reflect more on what we deem as normative than what we deem as autistic. How we conceive of functioning labels, for instance, is a product of social and cultural power, where “functioning” really means “the ability to act and think like all us normal and therefore superior people.” In a large way, distinguishing oneself as aspie can institute this sort of cultural power — a way to call attention to one’s position on the functioning food chain.

But I still use aspie here, despite the potential for misinterpretation, despite the potential for others to assume that I’m some sort of shiny, self-important autistic. And here’s why: I’ve been given a label in the name of pathology, and I want to reclaim that label in the name of disability studies/neurodiversity/autistic culture.

When I use aspie — and I daresay when certain other autistic people use aspie or autie — it’s not an act meant to exclude others, nor is it an act meant to create hierarchy among autistic individuals. In fact, I use aspie and autie almost interchangeably — because I personally don’t  see a difference between the two, at least not in a let’s-take-back-the-language-used-to-describe-us-and-oppress-us sense. Sort of what Simi Linton writes about.

To give further background: someone called me an aspie rhetor before I called myself an aspie rhetor. And I take issue with both words: First, the person who called me an aspie wasn’t someone who knew (or cared) much about autistic culture. And second, I take issue with being called only a rhetor — I’m also a rhetorician, dagnabbit.

The difference? Rhetors are people who make arguments or create messages (e.g., bloggers). Rhetoricians are people who study what rhetors do (e.g., study bloggers and their blogs and the people who read their blogs). Apparently, per this person, by sheer fact that I’m a so-called “aspie” — and am therefore disordered — I don’t have the ability to study the moves that other aspie rhetors make.

In fact, per this person, all of the autistic bloggers on the Autism Hub are aspie rhetors (even if they’re not, um, aspies): by sheer fact that they’re autistic, they’re incapable of being rhetoricians.

So, insert the mindblindness and Theory of Mind mantras here. I can’t escape my poor little mind prison, so I’ll always be the studied rather than the studier. Because goodness knows that autistic people are arhetorical beings who lack such audience awareness that they don’t have the capability of understanding what rhetoric is.

So, let me make something clear: I’m an autistic rhetorician, not an aspie rhetor. And Hub bloggers are rhetoricians, not just rhetors. But with what I like to think of as a final blow to this individual, I’ve called myself (or my blog) aspie rhetor. And why not? I’m an English major. I can spend the next 10 years analyzing all the crap associated with that term. And if ableist individuals are going to demand that I’m aspie (as opposed to the so-called “horribly damaged” autistic people) and that I’m a rhetor (as opposed to those people who actually know what they’re doing when they write), then I might as well make these terms my own, complicate what these terms mean, use them in ways they weren’t intended.

Moreover, because I like to think of myself as both a rhetor and a rhetorician, I’d like to think that I have some insight into making my own blogging space a rhetorically effective and accessible blogging space. For instance, aspie rhetor is not only easier to spell (e.g., aspierhetor.com), but it’s also easier (for me) to pronounce than autistic rhetorician.

Maybe someday — perhaps when the DSM-V arrives and does away with the Asperger’s stuff — I’ll remake my blog, or have two URLs leading to the same place: aspie rhetor and autistic rhetorician. But I don’t feel apologetic about referring to this space with the word aspie. I recognize that in many contexts, it certainly does create a dichotomy amongst autistic people, just like functioning labels do. But a rather large part of aspie and autie involves taking back the words that others come to know us by. And in that sense, I don’t see the dichotomy, and I don’t see the hierarchy.

Maybe I should put this stuff on my About page.

On October 11, I helped to lead an ASAN protest against the Autism Speaks walk at Ohio State’s campus. As I now have the benefit of being three weeks removed from the protest — as well as reading/hearing/seeing reports of other ASAN-led protests across the country — I feel a sense of accomplishment. I’d certainly never organized a protest before — and I’d only attended my first protest this past June, which was a disability rights protest against Ohio’s proposal to cut funding for community supports (and Ohio’s proposal to increase funding for nursing homes, ack). In June, I took notes about chanting and marching, and the chorus of Our homes, not nursing homes! is still present in my brain. (We were loud. And we were quickly hoarse.)

I suppose, on some level, I feel perpetually frustrated here at Ohio State. Our protest didn’t receive media coverage, which was a disappointment — though, to be honest, I’m not the sort of person who likes to be noticed, per se. (I’m not media material. I’m quiet-and-behind-the-scenes material.) But I also suppose the good news is that, really, Columbus’s Walk Now for Autism hardly received any media coverage itself. There was a quick spot on NBC4 (which was to be expected, given that one of their anchors has an autistic son and the station itself co-sponsored the walk), as well as a photo slideshow on The Dispatch website (the Columbus newspaper). Though my search for pro-Autism Speaks media coverage wasn’t entirely exhaustive, I doubt there was any other coverage (at least any other coverage of note). I taped all the news shows that evening, and no one else mentioned the walk. NBC4 seemed to monopolize it.

But back to the frustration: On campus, Autism Speaks seems to be everywhere. And it’s partly a matter of manpower and resources — they’ve got more than we do. By far. And our university president keeps uncritically singing their praises (to the point where we’ve drafted a petition and plan on standing on a street corner and asking passersby for signatures). I tire of seeing their flyers daily — flyers that variously portray autism as an epidemic, a puzzle, a burden on taxpayers, a fate worse than a combination of fatal situations. And I grow even angrier when I see flyers that read Got questions about autism? We’ve got answers!

Dear god. My colleagues, students, and professors might go to these people for answers?

I also love (not) how some of their past campus fundraisers have included things like Mary Kay parties, sorority cookouts at midnight, or shop-a-thons. Their events sound so autistic-unfriendly that, if it weren’t so egregious, I’d find it utterly hilarious.

I’ll end this post with photos. Several of these photos have circulated the blogosphere by now, so I’ll try and post those that weren’t featured (that I know of) in other blogs. The protest was very successful: nineteen people braved the throngs of “puzzled” walkers. We endured angry honks, middle fingers, haughty walking mothers, and entitled white men yelling, “You’re a bunch of f—ing idiots!” But we also had productive conversations with parents, and we were even thanked by autistic people who had been dragged to the walk.

This is me holding a sign reading "Autism Speaks does not speak for me"

Tim Jensen holds an orange sign that reads "Nothing about us without us"; Chris Lindemann holds flyers; Kate Comer holds a sign that reads "Diverse NOT Diseased"; and Jonathan Buehl holds a yellow sign that reads "Nothing about us without us"

Jonathan Buehl; Brenda Brueggemann with a sign that reads "Disability Rights"; me with a sign that reads "I can speak 4 myself"; Jason Smith with a sign that reads "First class autistic, second class citizen"; Justin Rooney with a sign that reads "I can speak for myself"; Meg Evans with "People not puzzles"

Jeffrey Strasser, "*Autism Speaks* against us"; Stephanie Ballam, "First class autistic, second class citizen"

Everything is really loud. The wind clanging the blinds together. The guy upstairs walking to what I presume is his refrigerator, given the sound patterns. Me typing. Me talking — even when people tell me to speak up. (I’m always loud. Don’t they get it? Loud, loud, loud.) Cars — need I say more about cars? The hallways at school, filled with feet and hands and mouths and papers and hair and eyelids and trashcans and mop buckets and plastic wheels and cellphones and clocks (some living, some dead) and doors and windows and air units and keyboards and beeps and teeth and light switches and flickering fluorescents and benches and…

I am home today, writing. And reading. I’m just wrapping up a five-week writing course, a course that I taught and enjoyed and feel exhausted over. The quarter system is fast-paced. The half-quarter system is even more fast-paced.

Scissors make noise. As does cardstock. But cutting out rainbow infinity signs is a welcome break from grading, a more welcoming sort of noise:

Crickets.

You’re too well-adjusted to be a neurotypical. You alphabetize the contents of your closet. Neurotypicals can’t even find the will to put their laundered underwear in their dresser drawers. They’re that cognitively damaged.

You sound nothing like a neurotypical. You’re succinct and honest, and not once have I ever heard you gossip. And, sure, you like to watch the occasional chick flick, but that’s a human thing, not a disability thing. If you were really, truly neurotypical, you’d blubber incessantly and inconsolably over trivial things like 10 Things I Hate about You or the entirety of the E! Channel.

You can’t read anyone’s mind. And everyone knows that neurotypicals are so afflicted that they can tune into others’ thoughts. They’ve got these savant-like cognitive powers that border ESP sometimes, yet they can’t even round off Pi to four digits. Fascinating, but so tragic.

I know you have three official diagnoses and all, but I think you need a fourth opinion here. I mean… you… neurotypical? Seriously? I read a WebMD article on neurotypicality once. These people are socially deluded. Your team of “board-certified” and “world-renowned” neurologists probably have some ins with big pharma or something.

I saw this television documentary on the neurotypical “spectrum” last week. All these poor little kids, suffering horribly. The fact that you don’t want to drive a metal stake through your skull in order to end your horrific existence means there’s absolutely no way that you’re neurotypical. Goodness knows that real neurotypicals want to be cured.

I saw you wearing an IEEE t-shirt once. Neurotypicals aren’t even sentient enough to pronounce “engineer,” never mind understand what an engineer does.

Do you really want this label? Labels have stigma. They create their own realities, and you might get trapped in the process. Do you really want to become an addled hairdresser, or worse, a politician? I mean, sure, some neurotypicals have found monetary “success” — e.g., Fran Drescher, Adam Sandler, or Dick Cheney — but they’re the exception, not the norm. Most neurotypicals end up in trailer parks, saddled with 40K in student loans, 30K in credit card debt, a closet full of “nothing to wear,” two ex-husbands, and 2.5 children to boot. I’m really afraid that this label will set you on the path to destruction.

You’re a guy.

Don’t you know that all neurotypicals speak? In fact, they don’t shut up. You and your PDA-mobile-text-machine thing just don’t fit the NT mold.

If you were really a neurotypical, you would have been diagnosed as a toddler. Such a severe cognitive handicap would be obvious, not something that would be misdiagnosed or overlooked. It doesn’t matter that neurotypicality wasn’t included in the DSM until four hours ago — people would have known. NT children are the pretty-in-pink brats running around with fake telephones, the kids who pester their poor autistic siblings to play “dress up” and “let’s go to the mall.” They bring the whole family down with them. The disease is just that bad.

Neurotypicals crave romance and affection. They have constant desires to be held, to be told how wonderful they are. You’ve only had one partner, maybe two. Really, you’re just not that “severe” when it comes to attention-seeking and sexuality.

Did you know that one NT child costs the average school district about $25,000 annually? Imagine all the non-NT kids we could be helping with that money. So, how dare you claim to be NT! I think you just want to mooch off the system. You and your excuses.

But, honestly, you can’t be NT because I, as an autistic person, say so. The sheer fact that you would risk putting yourself in a (dis)abled position endows me with the power to name and claim (dis)ability — or lack thereof — for you. Don’t you realize that (dis)abled people cannot name themselves, cannot label themselves, cannot enculturate themselves, cannot take pride in themselves? Don’t you realize that those who are deemed normative will always know more than those who are deemed non-normative?

Don’t you realize that everyone else will always know more about you than you?

Right now, our group has two big plans. The first is event-planning for Autistic Pride Day, which falls on June 18. The whole of April is dedicated to autism awareness, but the awareness preached in April tends to be of the medical sort, the sort that hyperfocuses on cure and prevention and alarmism. Our plans for the event have not been solidified yet, but we’re aiming for something that celebrates autistic culture. We’d been tossing the idea of holding an autie picnic in some prominent locale (e.g., the capitol lawn) and printing up a bunch of pamphlets that describe autism positively for passersby. We also have artists, writers, and possibly musicians in our group, and we’ve thought about asking those individuals to showcase their work, if they feel comfortable. We’ve decided to combine this picnic idea with another: we’re hoping to meet with a few state reps on the morning of June 17 and talk to them about ASAN, neurodiversity, and Autistic Pride. After that, then we’ll segue into the picnic and fun stuff.

The second item we’re planning is going to require a good deal of elbow grease: we want to visibly protest the Autism Speaks walk in Columbus on October 11. For a number of reasons, Autism Speaks doesn’t coalesce with neurodiversity activism. First of all, none of the Autism Speaks leadership positions are occupied by autistic people. Moreover, Autism Speaks frequently employs alarmist rhetorics in their depiction of the spectrum, e.g., comparing autism to lightning-strike stats, pediatric cancer, and AIDS. According to their organization, inviduals on the spectrum are inherently suffering and pitiable people who present an excessive burden to families and society. Autism Speaks’ main goal involves cure and prevention, and instead of directing their funding to support autistic individuals in their everyday lives, the group focuses on eradicating autism (or eradicating autistic people).

Our goal is for this protest to be peaceful: we hope to gather a large number of people and stand on the sidelines with large posters and signs. We also plan to write letters to the local Autism Speaks chapters, as well as their sponsors, before the event takes place. In our latest ASAN meeting, we discussed the difference between being “strong” and “militant” in our goals — strong having the better connotation. Given the events happening on the Ohio State campus recently, many of us are incredibly frustrated with Autism Speaks. Those of us who have written to them have been ignored or brushed off, and any disagreement we have with their methods or end goals is chalked up to us being so-called black-and-white or unempathetic or literal-minded disabled people who don’t know how bad we (or they, the poor families) have it.

A bit hard to read because of the wind, but the banner
is hanging from a sorority house. It has a puzzle piece
and Autism Speaks written on it, and is hanging for a
fundraiser called “flippin fuzzies.”

How are autistic people supposed to react when we see people wearing t-shirts like this? “Grateful” that people think of us as puzzles, as missing a few cognitive pieces? In what way is that not insulting?

How are we supposed to act when campus Greek life displays banners like the one above, or gives interviews like this one? Or when local grocery stores claim that a pseudo-eugenics organization aligns with their core values? I shudder at the thought that my peers, professors, and students might think of me and other autistic people as diseased, devastating, and lacking in “proper” brain function — everything a matter of deficit, deficit, deficit.

…hence, the protest.

On the first day of fifth grade, the teacher read off my middle name during roll call, and now they all know it. As I wrench myself across South Dakota and Nebraska, I hear taunts of Melanie-Rita-Book and Melanie-Rita-rd and Rita-rd-Died-A-Yer-a-geau.

And I awake the next morning, place Mrs. Toomey’s paper on the mailhooks, run from the chained pitbull at the Pembroke duplex, imagine a story in my head about an island made entirely of sugar, wonder if the series of rivers I’ve mentally sketched will eventually absorb the grass and cause massive island sinkage. And at recess, Jessie pushes me onto Georgia and calls me stupid, and Cindy, my only friend, has stolen a doll from my knapsack, but I pretend I haven’t seen her stuff it up her blouse. Jessie #2 makes fish faces and chants Rita-rd, Rita-rd, so I venture back with the only retort my Rita-Book brain can muster and call her a neutrino, which she unfortunately hears as nutra-nose. I run from the map and the impending fists, terrified, and self-induce an asthma attack.

The Robinson fascinates me. The edges curve, the lined coordinates uneven and gapped. I imagine my paper routes, imagine Jennings Drive and Wyman St., now a collection of lines. Down the hall, my parents play cards with the neighbor, my father recounting the story of how I flawlessly navigated a trip from Florida to New Hampshire at age seven. Earlier that week, he tried to make me grab a flyer from Market Basket and I tantrummed, wanting to know every precise detail from door entry to turns to grab-from-the-shelf protocol. So unfamiliar and unpredictable seemed the grocery store landscape, so intense for me, age 10, and even now in my twenties, to conquer on my own. And he had uttered that familiar, frustrated reply, “How can you be so smart and so stupid?”

I love my fifth grade teacher. I am working on a play about the Great Lakes region, and she lets me stay indoors during recess to work on it. I meet with a guidance counselor weekly, a Virginia-shaped man convinced that I’m at fault for my own bullying, and every time he suggests outside recess, I produce the magical asthma wheeze. Back I go to the teacher’s aide-cum-babysitter, to the longish table stationed outside the library, and I write about Sheila the Robber and her trip from Columbus to Cleveland. I sit at my laptop, some fifteen years later, staring at a Columbus city map, trying to remember the neon and the dots, the second Jessie who died of a brain tumor, the first Jessie who traipsed me into junior high, the dolls lost in the longitude.

I’m happy to say that my POS passed (!), and I’ve begun tackling my reading list. I’ve here posted the descriptions of my field, focus, and dissertation, if only because they deal with autism and rhetoric in a large way. Of course, things are subject to change, and my thinking will evolve, I’m sure. But nonetheless, this seems to be an accurate picture of where I’m at right now.

Field || Digital Media and Composition
During my tenure as a Master’s student, when I first began identifying as a compositionist, I was heavily under the influence of Richard Fulkerson’s “Composition at the Turn of the Twenty-First Century.” Fulkerson asserts that, in order to effectively teach a writing course, compositionists need to consider four major questions—questions of axiology, pedagogy, process of writing, and epistemology. In other words, when we, as teacher-scholars, consider and promote “good” writing, what/whose values do we promulgate? What do we assume about knowledge and meaning-making, and in what ways are our assumptions ideologically imbricated? I believe that recursively engaging Fulkerson’s questions leads to an even larger matter, one more thematically pertinent to my exam, to my ever-evolving sense of composition as a field: what does it mean to write or to compose in the twenty-first century (Selfe, Technology)?

It is with these questions that I find myself tethered to digital media studies, to the field of digital media and/or/as composition. Embedded in Fulkerson’s questions are questions of definition and being, questions of what writing itself is, of what texts are (Bolter). In what ways do we privilege alphabetic texts on a printed page—and how have these models of traditional writing been naturalized in the composition classroom? How does adherence to traditional, print-based composition diminish the importance of alternative forms of communication and meaning-making?

My own view of writing, as I approach my exam, is a multimodal one, one that considers multiple sensory channels in the making of meaning. In exploring multimodality and 21st-century writing, I look to the work of Kress and Van Leeuwen, who conceive of modes as semiotic channels through which we derive meaning—and media as the materials we use for producing multimodal texts (22). Traditional, alphabetic writing is itself a multimodal phenomenon, perhaps even a synaesthetic one, a phenomenon that might engage or mix writers’ senses of sound and/or sight (how does it sound? how does it look?), or their sense of touch (feeling the pen or the keyboard). Yet, in the academy, we privilege one medium (the printed page) for the transmission of a multimodal phenomenon, a medium that arguably excludes a large number of readers. What assumptions are made about audience when we privilege traditional texts and traditional ways of composing? And, as Fulkerson might ask, what composition processes are deemed as essential, as “right,” as “good”?

In addition to employing Fulkerson’s heuristic to composition theory, I believe we need to consider the affordances that digital media might bring to composition—the changes (or stasis) that digital mediation brings to academic genres, academic discourses, academic rhetorics, the distances bridged between composer and audience. Of course, in reconceiving traditional writing, I do not wish to naively forward multimodality and/or digital media as an accessibility savior. Yet, critical theories of media and modality, access, and audience, I would posit, undergird how we think about composition studies and digital media studies—both as distinct fields and as overlapping fields.

Although I recognize that composition studies is a broad, wide-ranging field with its own unique histories and theories¹, my own interests lie in a particular subset, that which intersects with digital media studies. Similarly, digital media studies is a field in its own right, one that stretches across disciplines in the humanities and the computer sciences and includes theories of technology, philosophy, performance, and social communication (Knievel). I believe that my defined field—digital media and composition, itself a distinct discipline with a 30-year history—both shapes and is shaped by composition studies and digital media studies as separate fields.

Because of these overlaps, I have divided my field reading list into three sections: composition studies, digital media studies, and digital media and composition. Though this categorization is somewhat contrived, I do wish to consider digital media and composition as both integrated and separate entities. My list contains texts that consider history, theory, and practice in all three categories.

Focus || Disability Studies
Though I realize that there are many overlaps, I see two major points connecting my focus to my field—issues of axiology (or, questions of value) and issues of access (or, questions of in/exclusion). Within the past two decades, many compositionists have come to understand “good” writing as a social negotiation among community members, as rhetorically catering to one’s audience (Bartholomae; Devitt, et al.; Ede and Lunsford, Singular Texts). The problem with this current configuration, I would posit, is that, even as teacher-scholars, our conceptions of audience are largely “imagined” to be a non-disabled audience, an audience filled with what Rosemarie Garland-Thomson has coined normates (Ede and Lunsford). In addition to audience, we might also examine how the other ends of the rhetorical triangle, those of writer and message, have been normalized in composition studies. Teacher-scholars still, despite much debate in the field, revert to metaphors of diagnosis and detection, of blindness and deafness in their descriptions of student writers (for examples, see Flower, “Writer-Based Prose”; Gruber; Villanueva, “Blind”). Furthermore, in academia, the printed page is the primary vehicle for intellectual activity, and writers are construed as able, literate, and/or educated in accordance with their ability to encode or decode messages via this medium.

Persisting in composition studies is the ideological belief that traditional writing and intelligence are somehow inherently linked, that traditional literacy is central to defining one’s intellectual worth (Graff). This ideological understanding of composing masks the notion that writing is simply one among many systems of making and conveying meaning, that “writers” do not necessarily privilege “writing” as their primary form of communication, that among our “readers” are those who cannot always access the messages delivered within print-based texts. If we limit our definition of writing to alphabetic text on a printed page, we need only question what medium we privilege in order to grasp which audience members we privilege—and those whom we exclude (Davis, “Deafness”).

In academia, conversation has become trope—a metaphorical exchange occurring on printed pages rather than literal, interpersonal, face-to-face communication. Embedded in composition scholarship is an assumption that students best learn, think, and write by means of alphabetic text on a printed page (Bolter). I believe that studies in digital media and disability give us reason to think otherwise (for digital media, see Anson; Miles, et al.; for disability, see Wilson). Disability studies allows us to perceive the ways in which traditional writing—and composition studies’ investment in traditional writing—normalizes and has been normalized by our understanding of “the” rhetorical triangle (Dunn, Talking 150). In some sense, as evidenced by recent discussions on the Writing Program Administrator listserv, digital media technologies such as screen-readers or social networking web sites are commonly perceived as assistive technologies, as tools that help those with disabilities better approximate normate writing and normate discourse. Yet, if we revisit the Spring 2002 issue of Kairos (titled “Disability: Demonstrated By and Mediated Through Technology”), we can begin to recognize the differences between digital media as assistive versus digital media as accessible or inclusive: the former, depending on the context, can imply that the writer is somehow lacking and is in need of a technological tool to make up for this lack, whereas the latter moves toward recognizing digital media composing as a valid and valued form of intellectual communication and exchange (Duffelmeyer; Miles, et al.).

I would offer that digital media studies, in conjunction with accessibility concerns, can aid us in unmasking these naturalized assumptions about communication and meaning-making, can aid us in moving toward a 21st-century, synaesthetic, multimediated theory of writing. As scholars in digital media and composition have argued, traditional theories and practices of writing are (and should be) shifting, especially if we diversify audience in terms of disability, race, gender, nationality, class, sexuality, and other markers of difference (Anson; Wysocki). Who does digital writing allow us to reach, and how does it let us do so? In what ways can digital media render writing and writing pedagogy more accessible, more inclusive? (And, lest I sound too optimistic about digital media and the potential for access and universal design—who might digital media exclude (Banks; Selfe & Selfe)?)

Of course, disability studies is a rich, dynamic field that, despite its overlaps, finds its roots outside of studies in digital media and composition. Borne out of activism in the 1960s, disability studies, generally speaking, is concerned with a social model of disability, where societal barriers and discrimination are more disabling than any so-called disability or form of bodily difference (Linton; Robertson and Ne’eman). A humanities approach toward disability has much in common with cultural studies and other theories of diversity (Powell). For example, comparisons have been made between the civil rights movement and the activities of the Deaf community, and parallels have been drawn between gay pride and autistic self-advocacy movements (see Robertson and Ne’eman; Autism Hub).

Through this social model, individuals have reclaimed the word disability and have embraced their identities as (dis)abled, even referring to normate populations as being “temporarily able-bodied” (Heilker, “Autism and Rhetoric”).  Memoirs and other personal, narrativistic forms of life-writing have functioned as one major lifesource for disability advocacy—and, perhaps most relevant to my areas of interest, the blogosphere has also served an important role in activist movements (Couser; Wilson). Because disability is an inherently personal and embodied identity, my disability studies reading list contains memoirs, novels, blogs, and narrative theory, in addition to scholarly texts that position disability studies within composition and/or digital media. I believe that these narrativistic texts are pertinent to the questions posed above concerning axiology and access—specifically, how (dis)ability affects our conceptions of audience and how it is we conceive of “text” and “writing.” Finally, as Paul Heilker has argued, the 1974 CCCC position statement on Students’ Right to Their Own Language has potential applications to the study of disability and composition because it invokes questions of value within the context of language and culture—and disability communities arguably occupy and form their own unique cultures (e.g., Deaf culture, autistic culture) and their own unique dialects and languages. Each of my reading lists contains texts by authors who grapple with the complexity of what writing and language are, and thus what it is that we as teacher-scholars value or privilege in/as writing and language.

Dissertation
My dissertation is directly tied to the themes touched upon in my field and focus descriptions. At this moment in time, I expect my dissertation will be divided into sections concerning 1) media and modality, 2) access, and 3) audience. Though these three topics relate to many key topics in disability studies, I plan to focus my research on autism specifically: I hope to explore certain key issues within popular autism discourse, namely, 1) representation of/for/by autistic individuals, 2) medical constructions of autism and autistics, and 3) common binaries/categories used to describe autistics (e.g., high-functioning vs. low-functioning). These issues shape our cultural conceptions of autism and autistics, which, in turn, shape our conceptions and our pedagogy in the composition classroom. Below, I briefly describe how consideration of media and modality, access, and audience might encourage different ways of talking about writing, teaching, learning, difference, and what have conventionally been considered disabilities.

Media and Modality. Digital media technologies—especially blogs and social networking sites—have enabled the autistic community to connect and to “speak back” to powerful, normate-run charities such as Autism Speaks without having to meet face-to-face, without having to worry about nonverbal nuance, without having to experience sensory overload, without having to worry about discourse conventions specific to traditional forms of writing (Clark and Van Ameron; Robertson and Ne’eman; Wilson). Many of these so-called autistic worries have been medicalized, with the sensory experiences and social communication of autistics being construed as neurological dysfunction in need of cure—an approach that many autistic individuals ardently resist (for examples, see the Autism Hub). If we as compositionists construct autistic writers as neurologically diverse rather than defective or diseased, how might we reconsider our axiological assumptions about writing and digital media?

Access. As G. Thomas Couser has commented, the affordances that digital media lend to those with disabilities are not widely available within the generic strictures of the publishing industry, which often call for “typical,” formulaic narratives—such as the triumph novel, or the sentimental/pity-me novel—when the topic involves disability. Accounts that disembark from these formulas are not as marketable—and, as a result, many autistics who advocate neurological diversity rather than cure find themselves relegated to the blogosphere while charities control popular and cultural discourses surrounding autism (Garland-Thomson). Of course, these examples of narrative perhaps lie within the realm of genre more than they do media. Yet, media are inextricably tied with our conceptions of genre, writing, and access. For instance, recent composition scholarship has painted autistic individuals as inherently, rhetorically clueless writers: acute attention to detail and lack of transition statements have been depicted as symptoms of autism in dire need of treatment (Jurecic, “Neurodiversity”; Yoder). How might we reconceive academic genres and acknowledge—or, I daresay value—autistic discourse conventions within traditional writing? How might we involve digital media as we strive to make writing more accessible?

Audience. A common medical construct in scholarship regarding autism involves empathy: autistic individuals supposedly lack what has been termed “theory of mind,” or the ability to imagine the mental states of others (Baron-Cohen). In terms of rhetoric and composition, teacher-scholars have connected this lack of empathy to lack of audience awareness, assuming that autistic writers are egocentric and self-centered because they cannot connect with a neurologically typical audience (Baron-Cohen; Jurecic, “Neurodiversity”). From a disability studies standpoint, however, I believe we need consider how the amorphous audience concept in composition studies has been normalized—that is, how audience has come to exclude those with disabilities, or, in this case, autistic individuals.

Methodology. Without prematurely committing myself to a data set, I anticipate analyzing discursive trends within the blogosphere, particularly blogs belonging to the Autism Hub, an online community that approaches autism from a positive and neurologically diverse perspective. Additionally, my research might also include interviewing a very small sample of autistic college writers who are active in these online advocacy movements. In sum, I hope to examine constructions of autistic writers both in and outside of the composition classroom, and I also wish to consider the communication affordances that digital media might offer autistic individuals. Finally, because I do not want to privilege the printed page as my sole medium of transmission, nor do I wish to assume that all of my readers are self-identified normates who prefer to read, think, and learn via traditional alphabetic text, I anticipate that my dissertation will include digitally mediated components.

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¹ Composition studies traces its immediate history to the development of writing-specific courses in the mid-1800s, with sustained study and graduate-level programs having emerged only within the past 40 years—a stark contrast to the emerging subfield of digital media and composition, which is even more nascent (Brereton; Miller, Textual Carnivals). Michael Kneivel and others have set the birth date of digital media and composition within the mid-1970s, and the first major journal within the field, Computers and Composition, came into being in 1983.