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

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

From the Loud Hands website:

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

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

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

My commitment had a slow-motion feel to it. As it was happening, I couldn’t believe that it was happening — I was daydreaming, or I was watching a poorly written Lifetime biopic, or I had eaten moldy leftovers that triggered hallucinations, or something, anything but reality. But, no. This was my reality, and my reality soon spiraled into the progressive tense, into something like this:

– They were strapping me down on a gurney.

– They were wheeling me out of an academic building and into the parking lot, onlookers gawking.

– They were forcing me into an ambulance.

– They were dragging me, still on the gurney, into the psych ER, which resembled a TV prison — brisk security guards, cheap wall paint, steel-enforced doors, cameras that aren’t supposed to look like cameras but inevitably do look like cameras. They were dragging me in there. There.

– Soon, they were vigorously frisking me, and they were dumping out the contents of my backpack, and they were treating me like I was a criminal because I carried a bottle of Tylenol and a 3-inch autistic pride button, and they were shoving me, now shoeless and sweaterless, into a doorless room with hard-backed chairs, and they were prohibiting me from making any phone calls unless I did so via speakerphone, and they were threatening me with overnight and multiple-day stays and refusing to let me wear my headphones, and they were mixing up my diagnoses while periodically asking, How are you doing, sweetie? — As if they really cared. As if I were a sweetie.

Before the EMTs bundled me, pig-in-a-blanket style, into the ambulance, my former therapist asked me why being committed was such a “bad” thing. “If you have to ask that question,” I fumed, “then you really don’t have a clue.”

That pre-ambulance moment, to the best of my memory, is when their ventriloquism started. Suddenly, the experts claimed, I wasn’t talking. God, no. That’s your depression talking, they explained. That’s your autism talking. That’s your anxiety talking. Really, it’s anything but you talking.

Hours later, I sat in the psych ward, shaking, rocking, stimming, ticcing — anything to prevent epic meltdown mode.  I was disembodied. Objectified. Powerless. I was freezing, hunkered up against the wall in my new doorless home, watching an eight-year-old kid being forcibly removed from his parents. How do I not headbang? How do I not bite myself? How do they not see our humanity?

–

I have gotten used to not existing, rhetorically speaking. I study rhetoric for a living. I teach it. I have a PhD in it. I breathe it. Rhetoric is everything and everywhere, many of my colleagues say. The exception to rhetoric’s everythingness and everywhereness is, of course, autism.

I’ve reached a point in my adult life where articles on autism and perspective-taking inspire me — inspire me to commit self-injury, that is. Rhetoric is about audience and autism isn’t, these articles say. Autistic people are mindblind; autistic people are masked by a cloud of social solitude; autistic people are self-centered and shrouded by their neurological misery. I grossly paraphrase here, but not really.

And so, I have gotten used to not existing, rhetorically speaking. I will say something about autism, and someone will assert that nothing I’ve said matters or applies to anything. Because I’m self-centered. Because I don’t have the capacity to intuit other minds or understand others’ life experiences. Because it’s just my autism talking.

How can one have autism and have something to say? Autistic voice is the ultimate oxymoron. If they don’t want to hear it, then we haven’t spoken. We don’t matter because we don’t exist. We’re just a bunch of absent sweeties waiting to be strapped onto their gurneys.

That’s just your autism talking, they respond.

–

It is weeks later. I’ve been working, shaky and paranoid, scraping by in an already rough semester, a semester made rougher by male orderlies who find sensory overload amusing.

I am teaching a disability studies course, and it’s now November. We’re reading Dawn Prince-Hughes’ Songs of the Gorilla Nation, an autiebiography. I’ve never had a full class read it before, and I approach the class discussion with an excitement that I haven’t felt since my pre-commitment days.

Something transpires in this discussion, a something that jars me. Some of the students don’t think there’s a plot to Prince-Hughes’ book, that it’s too bogged down in details. Some of them wonder whether her autism made her write this way — some of them doubt her intentionality, her rhetoricity, her capacity to understand writing and audience and perspective-taking. In short, they wonder who’s really talking: Is it her or her autism?

I offer this moment not to reflect poorly on my students — my students are students, people who are kind, receptive, bright, and willing to learn. Rather, I offer this moment because it is iconic and pervasive, because students (and faculty, and parents, and clinicians, and, shit, most people) have learned this response from those who came before them. I offer this moment because I’m pissed off at those who taught them this. I offer this moment because, after it transpired, I flashbacked to my commitment and my forced disembodiment. I offer this moment because I am me, because I am an autistic me, because my autism is not a synonym for demon possession. I offer this moment because I locked myself in a bathroom stall and began cutting my leg with my 3-inch autistic pride button.

–

I recently dreamed that I was forced into a special education class for assistant professors, my 3-inch button affixed to my backpack, bloodstained and visible. This was a waking dream, an unrestful dream, a dream filled with groans and body twitches. The button was how I knew I had a body; the wakefulness was how I knew I had a voice.

But that’s probably just my autism talking.

I hear this a lot lately, primarily from undergraduate students who find autistic self-advocacy reprehensible and/or incomprehensible. In fact, at our protest this fall, someone actually came up to us and said, “If you can self-advocate, then you’re not autistic.” Way to disempower much?

Here is the wonderfully circular logic that has come to constitute much of my advocacy life lately:

Me: What you’re doing is hurtful.
Them: But we just want to help people like you.
Me: You’re not helping. Please stop.
Them: But we just want to help people like you.
Me: But you’re not helping.
Them: BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!

I’ve spent the past few months trying to devise smart-ass responses to this statement.

• But I just want to torture people like you.
• Oh! Yes! Of course! I’m sorry! I forgot that this was all about you!
• *cuing echolalia* BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!

And herein lies the frustration: Advocacy isn’t advocacy if it’s merely a synonym for self-interest. If the people you’re claiming to serve are objecting to your help, are telling you that you’re being hurtful… shouldn’t that give you pause?

I have no reason to be grateful for your hurtfulness. I shouldn’t have to grovel because you’re wearing a t-shirt with a puzzle piece on it, or because you’re raising funds to prevent people like me from existing. I shouldn’t have to look you in the eye, tear up, and utter an inflected “thanks” because it makes you feel good about yourself.

My lack of gratefulness isn’t an ASD symptom. My lack of gratefulness doesn’t mean that I’m not disabled. My lack of gratefulness isn’t impoliteness, smugness, self-centeredness, theory of mindlessness, or some other bad-sounding, mega-autism, amorphous blob thing. I shouldn’t have to wake up feeling grateful every morning, as though gratefulness is some sort of requisite pre-condition for being developmentally disabled.

Would you feel grateful for people who want to “eradicate” people like you?

Would you feel grateful for people who refer to you and your loved ones as an “epidemic,” as a “global public health crisis,” as a “disease” more prevalent than “pediatric AIDS, cancer, and diabetes combined”? Would you feel grateful for people who make a career out of representing you and others like you as creatures of pity, contagion, and fear?

Would you feel grateful for people who ask you, in front of large crowds, how old you were when you were toilet-trained? How you manage to have sex? How you wake up every morning knowing that you are you?

Would you feel grateful for people who call your parents “heroes” because they didn’t put you up for adoption?

Would you feel grateful for people who start up college groups that patronize you? Groups that claim to be your “voice,” yet never even consult you? Groups that devise activities meant “for” you or your “benefit,” yet in their very design exclude you and people like you? Make-up parties, gala balls, sorority cookouts, sensory unfriendly films, massive and crowded walks — boisterous, clamorous, noisy events, events advertised to help you, all the while raising funds to get rid of you?

Would you feel grateful for people who claim you don’t exist, merely because you’re over 21? Because you’re a woman? Because you claim to have a sexual orientation?

Would you feel grateful for people who disprove of, and ardently protest, your decision to have children? Would you feel grateful for people who work to revise custody laws so that people like you can’t single-parent or adopt?

Would you feel grateful for people who call you mysterious, puzzling, special, and heroic — because you’re you? (And, of course, being you isn’t something they’d wish on anyone.)

Would you feel grateful for people who regularly describe your body language, ways of gesturing, and ways of interacting as disturbing, inappropriate, deviant, clinical, and abnormal? Would you feel grateful for people who tell you that the way you think, act, know, and sense are all wrong?

Would you feel grateful for people who segregate you from your classmates, people who claim that who you are as a person will have detrimental effects on your peers’ intellectual development?

Would you feel grateful for people who tell you that you’re an “exception” and therefore nothing you say even matters? Would you feel grateful for people who question your diagnosis simply because you disagree with them?

Would you — should you — feel grateful for people who constantly tell you how ungrateful you are?

Would you feel grateful for these people? Seriously? Truly? Because, if that’s the case, perhaps I can teach you how to flex your ungrateful mind muscles.

**

In other news: I’m back, after a small hiatus. Academic life has been a bit hectic (understatement) these past few months.

Me holding a sign: "People not puzzles!"

I managed to maintain my composure throughout the protest, regardless of the insults thrown our way, regardless of the noise and clamor and overt hostility of the event. But then I came home and started sifting through an hour’s worth of video footage — and I broke down. Sobbing, shaking, rocking. It was so intense, all so intense.

I don’t want the next generation of autistic people to face this crap. I want it to be different for them. I want them to take pride in who they are as autistic people, and I want those who love them to take pride in who they are as autistic people. I want autistic ways of thinking, being, and knowing to be valued and validated. I want autistic people to have a say in the decisions that concern them.

And most importantly, I want there to be autistic people.

Video recaps of the protest:

Our protest attracted media attention from 10TV, ABC 6, and independent journalists. Even today — Wednesday, four days later — random strangers notice the Autistic Pride button on my backpack and exclaim, “Hey! I saw you on the news! You talked about where the money goes for that autism walk.” These things help — knowing that our four-hour ordeal has had some tangible effect, has furthered our cause.

We were featured on the ABC 6 news, and I provided a brief soundbite:

We also created our own video of the protest. Nick J. was our cameraman extraordinaire, and I did the editing. The video is still painful for me to watch — especially toward the end, while we’re chanting Autism Speaks needs to listen, and, in an alarming touch of irony, the walkers drown us out by collectively screaming O-H-I-O!

As I replay the clip, I have to cover my ears, tuck my chin down into my chest, breathe heavy. It is hard to watch, but it is a poignant example of Autism Speaks’ attempts to silence us, to refuse to listen to us, to never let autistics speak.

This post wouldn’t be complete without a thank you. Thank you. An incredible number of people, local and distant, helped us through this protest. And despite the protest’s emotional toll, perhaps even because of the protest’s emotional toll, I’m glad we did it. And I know that we need to continue doing it. Change is long and hard. But it’s happening.

Protesters face the crowd of walkers

]]> http://aspierhetor.com/2010/10/13/columbus-protest-against-autism-speaks/feed/ 10 http://aspierhetor.com/2010/07/28/how-to-train-your-baby-to-be-neurotypical/?utm_source=rss&utm_medium=rss&utm_campaign=how-to-train-your-baby-to-be-neurotypical http://aspierhetor.com/2010/07/28/how-to-train-your-baby-to-be-neurotypical/#comments Wed, 28 Jul 2010 14:50:56 +0000 Melanie http://aspierhetor.com/?p=760 On June 23, I attended the Nisonger Autism Institute, a day-long, invitation-only conference that focused on transition across the lifespan. I’ve been wanting to write on my experience there for some time now, but needed a month in order to cohere my thoughts (and to lower my, um, blood pressure).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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]