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*

—-

“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.

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.

Enter Luke McKinney’s The 5 Most Retarded Causes People Are Actually Fighting For on cracked.com. The title itself cues readers into the sort of rhetoric that McKinney abides by. Item #1 on his list is the Asperger’s Pride Movement:

Asperger’s is a real disorder for some, but has turned into a kind of “get out of self-improvement free” card for legions of socially awkward Pokemon fans. This latter group doesn’t care about your “medical credentials,” “basic common sense” or even “knowing people who actually do have Aspergers.” This syndrome they read about on Wikipedia once is their winning lottery ticket to a life of never having to learn how to interact with other humans. Welcome to the Aspergian Pride movement.

I’m really at a loss as to where this attitude toward Asperger’s comes from. It’s an attitude I encounter quite a bit online. In aspie forums, we often discuss the difference between using Asperger’s as an explanation versus using Asperger’s as an excuse – but the dominant NT perception online seems to be that Asperger’s is an excuse about 90% of the time, or that Asperger’s is a largely mythical disorder.

Per my own understanding, Asperger’s as explanation involves disclosing in such a way that communication and understanding are more easily achieved for all parties, regardless of neurological wiring. Conversely, Asperger’s as excuse occurs when the goal involves getting out of or getting away with something, e.g., Mom, I can’t clean my room because I have Asperger’s and am resistant to change.

I don’t think that the latter example, Asperger’s as excuse, is as problematic of a phenomenon as people on the net make it out to be. Who hasn’t used something as an excuse to get out of something? Moreover, there is a fine line between explanation and excuse, I think. While there is very little I “cannot” do, there are many, many things that I have extremely great difficulty doing, just as there are many, many things that I “can” do, but can only do very poorly. (For example, I can physically make eye contact. However, in forcing myself to do so, I stop paying attention to other things, and I also maintain eye contact in a very obviously forced, unrealistic fashion.) The aspies I’ve met generally don’t use Asperger’s as a way of excusing themselves for being manipulative jerks, as cracked.com would have people believe.

This whole debate — the excuse versus the explanation — goes back to the ADA, I think, especially to issues of accommodation. If we judge PWDs based on “retarded causes” and fakery claims postulated by internet sources, then accommodations for largely “invisible” disabilities like ASD or LDs become unsubstantiated complaints made by a pack of faking whiners.

As an example, I think to my own documentation that sits in my university’s office for disability services. One of the suggested accommodations involves class participation, a request that I be entirely absolved from verbally participating in class. Now, I know how to speak, and do speak, despite having difficulties. Does this make my accommodation an excuse made by a lazy whiner?

I should also mention that I’ve rarely asked disability services to contact my professors. I am fearful of being perceived as lazy, even though, legally, I shouldn’t experience such backlash. However, I’ve generally found that telling my professors of my difficulties — without invoking the disability/autism label — has worked as well as (and sometimes better than) asking disability services to intervene. One negative experience with disclosure comes to mind: my ODS counselor contacted a professor of mine, mid-quarter, and informed them (I’m being gender-neutral on purpose) that I was registered with their office and had communication issues. My professor, in response, said, “Melanie has a disability? But she’s smart!” My professor treated me differently after this point, and tended to be very patronizing.

I wonder how it is that we identify these so-called fakers who take excessive pride in their fraudulent disorders, disorders which, when real, supposedly cause “extreme suffering.” Because that’s the point, isn’t it? Unless we hate ourselves, we don’t have a real disability.

I’ve noticed a lot of theoretical overlaps between the readings from my independent study on autistic narratives/rhetorics and the readings from my Race & Literacy course. All of these readings, whether implicitly or explicitly, deal with issues of representation and community, as well as issues of authorship and subjectivity. To borrow a question from Jacqueline Jones Royster, who can/should/does speak for/with/about whom?

Royster’s question seems especially pertinent in the writings and conference presentations of Paul Heilker, who, in claiming that autism is a rhetoric, is careful to delineate between autism communities and autistic communities — the former composed largely of parents and charities, the latter composed largely of individuals on the spectrum. These two communities, as one can probably gather from the unrelenting snark that has come to constitute my blog, are “warring” factions. Both claim representation rights; both claim to be voices of/for/with/about autism. The Autism Society of America claims to be the voice of autism; Autistics.org claims to be the real voice of autism (Heilker, CCCC 2008).

Interestingly, the primary audience of most large autism charities isn’t the autistic individual: by and large, their audience seems to include everyone but the autistic individual. Parents, teachers, supporters, doctors, researchers, students, any NT with spare pocket change — these are the bodies that such organizations strive to reach. Thus, ASA, for example, assumes its role as the voice of autism, rather than the autistic voice, because they imply that autistics, whether speaking or non-speaking, cannot autonomously self-advocate — for autistics to do so would go against the DSM IV criteria, or somesuch nonsense. Moreover, in highlighting autie and aspie testimonials on their home page, ASA suggests that individuals on the spectrum need an NT voice behind theirs in order to “function.” We autistics are high-functioning only inasmuch as we have NTs to brace us: note the lining up of ASD narratives next to narratives of NT mothers and NT speech pathologists. (Of course, I should here note that ASA is a lot more “ethical” in its operations and approach toward autistics than, say, Autism Speaks and other cure-autism conglomerates.)

Voice and representation are likewise large issues in writings that concern race and literacy. Morris Young, in Minor Re/Visions: Asian American Literacy Narratives as a Rhetoric of Citizenship, contends that the literacy narrative, as a genre, has the potential to allow Others to project their voices, to position themselves as individuals against their communities, to analyze the hegemonic functions of literacy, to “become minor” in the process of writing. The dominant theme in Young, as well as in John Duffy’s Writing from These Roots: Literacy in a Hmong-American Community, involves the relationship between self and society.

Autism is derived from the Greek word autos, which means self. Drs. Kanner, Asperger, and Bettelheim frequently described autistics as being inherently self-centered, trapped in their own worlds, imprisoned in their asocial bodies. Dr. Simon Baron-Cohen propels lack of theory of mind as an accurate description of autistic selfhood, this inability to empathize and recognize the intentions of others serving as a large marker of autistic existence. Ann Jurecic and Lisa Zunshine, both scholars in English Studies, also herald theory of mind in relation to autistic identity, bringing up issues of mindblindness and autistic egocentrism.

If autistics are seen as self-centered, self-absorbed, and self-isolating individuals, it’s little wonder that the idea of an autistic community — in contrast to an autism community — seems paradoxical. How can a bunch of self-absorbed selves form a community? How can a bunch of self-absorbed selves relate to a bunch of self-absorbed selves? How can a bunch of autos, autistic voices meld into a (semi)unified, real autistic voice?

I think it’s important to note that these questions largely stem from autism discourse, rather than autistic discourse, and perhaps this is why so many spectrumites loathe “person first” terminology, preferring “autistic” to “person with autism.” The phrase “person with autism” suggests that, should the autism be removed, a “real” person will emerge — without any trace of that asocial, autos garbage. It denies the intermingling of the autistic autos and bodily self. It denies the intermingling of autos and voice.

All of this rambling brings me back to the title of my post, to the idea of the self-indulgent narrative. In Literacies, Experiences, and Technologies, Sibylle Gruber writes,

I would like to argue that I don’t use the personal for capital investment, that I don’t use the personal as a mirror reflection of a self or culture, that I don’t slot myself or others as being able to speak for a group, and that I don’t disembody the personal…. But it is also important to acknowledge that personal narrative — or self-reflexivity — can become ‘self-indulgent or narcissistic’ …. In other words, despite conscious efforts not to use identity politics for individual gain, it is often difficult to escape the unconscious or subconscious tendencies to justify, defend, and promote an individual, albeit theoretically founded and supported, perspective. (22)

Throughout her book, Gruber positions herself, as a foreign researcher, in the contexts of those she researches. Gruber contends that personal biases are a real part of research, and she thusly justifies her use of personal narrative. Yet, she also fears narcissism, that her narratives about her ESL status are misplaced, autos-ridden tidbits of the personal.

Similarly, in “Tender Organs, Narcissism, and Identity Politics,” Tobin Siebers writes of the ways in which personal narratives of disability are often conflated with narcissism:

It is wrong to study what you are. (41)

But I also think that people with disabilities need to resist the suggestion that their personal stories are somehow more narcissistic than those of able-bodied people. If we cannot tell our stories because they reflect badly on our personalities or make other people queasy, the end result will be greater isolation. (50)

Now we of the tender organs need to introduce the reality of disability into the public imagination. And the only way to accomplish this task is to tell stories in a way that allows people without disabilities to recognize our reality and theirs as a common one. For only in this way will we be recognized politically. (51)

I worry that my writings about autism are, or will be, perceived as the self-indulgent, narcissistic writings of a pathological person with autism. As a I read over my previous post, a post that is rife with the personal, I wonder about what I should strive to be. Is this a personal blog or an academic blog? When the autism community reads my writing, do they immediately believe that I lack a theory of mind? Am I too autos for the masses — do I need to de-auticize myself in order to be seen as a voice of/for/with/about autism? In what ways can I be an autistic voice who writes for/with/about/to/at the voice of autism? How do we begin to bridge the realities of autistics into the public imagination of autism?

Paul Heilker and Jason King suggest that the end to the autism/autistic war — or, more likely, the beginnings of an autism/autistic truce — may involve Krista Ratcliffe’s concept of rhetorical listening. Rhetorical listening, unlike empathy, invokes understanding commonalities and differences. Ratcliffe claims that

understanding means listening to discourses not for intent but with intent — with the intent to understand not just the claims but the rhetorical negotiations of understanding as well. To clarify this process of understanding, rhetorical listeners might best invert the term understanding and define it as standing under, that is, consciously standing under discourses that surround us and others while consciously acknowledging all our particular — and very fluid — standpoints. (28)

Notably, Ratcliffe does not claim that the solution to life’s problems necessitates peeking into the mind of the Other. Rather, she stresses the necessity of difference, those autos features that particularize us as individuals.

I find it ironic that, in this discussion of the necessity of difference and personal narrative in disability writing, I haven’t been very personal. As a result, I now share this photograph, which is also meant to break up the textual monotony of my blog:

[A portion of my ELO collection: my perseveration of choice]

Of course, I think that this theory has done quite some damage. Autistics have been represented as characteristically unempathetic individuals. And this “unempathetic” characterization has often been conflated with emotionlessness, conceitedness, apathy, and plain old malevolent and murderous evil. While I don’t deny that I’m hardly able to place myself in the shoes of others, I do posit that no one can really, truly place themselves in someone else’s shoes, unless we’re talking about literal shoes with similar foot sizes. In any event, I think there’s a limit and a danger to this thing we call empathy, because empathy isn’t wholly concrete and logical. Empathy, by definition, involves assumption and guesswork.

Empathy (or imagined understanding) can only be remotely successful when engaged between people with similar backgrounds, people who occupy similar social stations. Thus, in the same manner that aspies and auties have difficulty empathizing with NTs, so too do NTs have difficulty empathizing with auties. (James Wilson, in Weather Reports from the Autism Front, makes this very point about empathy. He can’t pretend to understand his autistic son’s experiences, his ways of knowing and being. Neurotypicals are just as empathetically impaired as autistics.)

[Jenny McCarthy: "expert" on autism, empathy, and strapless bras]

I like Dennis Lynch’s complication of empathy in “Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West.” In his article, Lynch suggests that true empathy is never possible because such an act results in “bodily displacement,” in colonization or assimilation. So, in order for an NT to step into an autistic’s shoes, the autistic has to physically remove her feet from her shoes. As a result, when an NT claims to empathize with autistic experience, the NT is really imagining what it would be like for an NT to be an autistic — not what it is like for an autistic to be an autistic. The same could be said about an aspie or autie attempting to empathize with an NT: bodily displacement results.

Of course, because neurotypicality is the dominant neuro-discourse, NT ways of empathizing are considered more acceptable than autistic ways of empathizing. Warning of empathy’s co-optive dangers, Lynch writes,

Empathy in this way may seem like a harmless practice as one imagines how another may be feeling about an event, circumstance, or issue, but, as these critics argue, whatever’s empathy’s expressed aims may be, asking people to empathize usually locates the obstacles to empathy—to listening and to being heard—solely in the minds and habits of individual participants, and so obscures or ignores the political and economic and bodily dimensions of social struggles. (6)

This isn’t to say that empathy is inherently bad or wrong. However, empathy has its limits and dangers — severe limits and dangers. In assuming we can experience the fullness of another person’s “lifeworld,” we erase, or make transparent, very real differences (Lynch 9).

I’m not entirely sure where to start here, PETA. First of all, though I realize that ads meant for billboards and quick web visits are meant to be image-heavy and textually sparse, you’ve provided a whole lot of misinformation in your few measly independent clauses. In asking the lovely “Got autism?” question, are you trying to be sardonic and rhetorical, or are you in fact addressing the 20 million autistics who currently occupy planet earth? Because, sure, I’ve got autism, and no, I had no idea that studies linked cow’s milk to autism. But perhaps your “study” is actually synonymous with what I would call “total crap.” Just a thought. Although, since I’m autistic, it might be that my inner thesaurus is operating on some totally whacked out, casein-induced frenzy. Or how about not?

Anecdotally, some autistics note amelioration of their “symptoms” — e.g., isolation, meltdowns, sensory overload — when they’ve removed dairy and wheat from their diet. (Of course, PETA, you would never crusade against wheat.) However, this “improvement” is anecdotal and not scientific. It could be that some autistics experience food intolerances or digestive problems. But, see, there’s a big problem with this “link” word, PETA, because any protective parent who reads this will assume that milk has been shown to have a causative impact on autism, which it simply doesn’t. There are plenty of vegan autistics who are just as autie or aspie as ever. I suppose, on the positive side, if people were to assume that milk does cause autism, then maybe they’d get their kids vaccinated and stop with the mercury-poisoning mantras.

And then there’s that frowny face, PETA. The Cheerios are a nice touch, really. I’m glad you didn’t use Fruit Loops, because then that might play into the assumption that only autistic children are worth giving a crap about.  But the frown — oh, the frown. I may have difficulty with nonverbals and facial expressions, but I think I’m accurate in concluding that Mr. Cheerio Face is quite weepy and pathetic. Basically, PETA, you and Mr. Cheerio Face are making the assumption that autism is a sad, sad thing. And, quite honestly, it’s not. Autism is a way of life, much like veganism, minus the liking of food-with-freaky-textures thing.

On another page, you write:

Autism is a brain disorder that causes sufferers to have extreme difficulty communicating and relating to others. It is often marked by anti-social behavior like screaming and obsessive repetition of actions, which takes an enormous emotional toll on sufferers and their families. PETA has created a billboard to alert the public to the connection between this devastating disease and dairy-product consumption. …

Anyone who wants to alleviate or avoid the devastating effects of autism should give cow’s milk the boot and switch to healthy vegan alternatives instead.

Again, PETA, you’ve mixed up some pretty important facts. Autism isn’t a disease.  It isn’t something that you wake up with one morning; it isn’t something that you catch on the subway; it isn’t something that goes away. Autism is a neurological condition, a condition that affects how one’s brain is wired. Autistic brains and autistic existence aren’t devastatingly anything, unless you’re claiming that they’re devastatingly awesome.

You ask, “Got autism?” I say, “Yes, I do.” Somehow, though, I don’t think you were ever asking me anything in the first place.

So, as I now listen to “September Song” for what is probably the fiftieth time today, I am also trying to complete a “map” of what I want to complete (and when) in my independent study this term. As I mentioned a couple of weeks ago, I’m focusing on autism, rhetoric, and representation. I’ve so many things that I want to read, and I keep having to tell myself that I only have ten weeks to accomplish this, and it’s hard for me to figure out what a workable reading load is. This past weekend I wanted to read a couple books written by parents of autistic children (including Jenny McCarthy’s book — and not because I like Jenny McCarthy’s ideas). However, I ended up on a rabbit trail of sorts, and ended up re-reading Michael John Carley’s Asperger’s from the Inside Out. (I suppose he counts as both an aspie AND a parent of an aspie. So I wasn’t completely off track.)

I also finally worked up the nerve to email a professor in the field of rhetoric and composition who has been doing work with autism. I wasn’t sure whether or not it was socially appropriate to email random professors at different colleges because of e-stalking I’d done via Google and CCCC electronic conference programs. So, I spoke with a couple of non-random professors (a.k.a. my professors) and got some tips on what to say (and what not to say). After spending three days writing the email and having two fellow grad assistants read over what I’d written, I finally hit “send,” and actually got a response — a very pleasant, encouraging, and helpful response. He sent me several pieces he’d written, and so I decided to read those in lieu of vaccine-bashing narratives.

I’m really excited to finally connect with people in my field who are looking at rhetorical and social constructions of ASDs. It’s hard to talk about my interests in autism to non-humanities people a lot of the time. It’s not their faults, necessarily: we just have different disciplinary approaches, and the things I’m interested in are wrapped up in language and philosophies about meaning-making and axiological assumptions, not studying brain functions or therapeutic interventions.

Lately I’ve been pondering what I’ll be writing my dissertation on. I’m just entering my second year and still have at least three more classes to take, so I do have time to decide. I won’t be locked into anything for while, probably about a year. And yet, I see two very distinct possible threads that I might pursue, threads that may, indeed, be dissertation-worthy. My current scholarly obsession is Pentecostal rhetoric, and I’ve been sort of fixated on Aimee Semple McPherson, a preacher in the 20s and 30s and founder of the Foursquare church. I’m currently writing a book chapter (a draft of which is due in less than two weeks). My problem, as always, is that I feel like I can’t stop reading, I can’t stop collecting, I can’t stop taking notes.

And then there’s the other thread — the disability studies/autism/Asperger’s thread. I think that the recent proliferation of media-driven constructions of autism needs rhetorical scrutiny. And reading disability studies theory, from a humanities standpoint, allows me to talk about social constructivism until I’m blue in the face and have unknowingly bored everyone around me.

I have personal connections to each thread, obviously. My parents left the Catholic Church when I was in kindergarten and became born-again Christians. I was mostly raised in Pentecostal churches, and attending a Presbyterian college was an interesting transition (and resulted in another of my obsessions, John Calvin). I really enjoy dissecting these various theological frameworks and trying to understand what makes them tick, what makes their audiences tick.

There’s a lot of overlap between pentecostal/charismatic churches and faith-healing. That’s what led me to McPherson, especially, and I think she’d be interesting to examine from a dual feminist rhetorical/disability studies standpoint, especially since she was one of the first radio evangelists in the U.S. (second to Billy Sunday). But I’ve yet to find overlap between McPherson and autism… and I hate the idea of dumping one interest for the other. My only thought thus far is to explore faith-healing generally…but I hate “generally.” I’m more in favor of “super specific.”

In any event, it is August, and I’m writing a book chapter on McPherson, and I just submitted a webtext on autism and embodied authorship to an online publication. I’m tired and I can’t wait to go apple-picking next month.