08.10
I’ve been thinking a lot about what Savannah wrote on passing a week back, especially this line: “We deny essential parts of ourselves in order to resemble ideals and stereotypes of our cultures [when we pass].”
I am wondering what a day without passing would look like for me.
It would likely be a day where I, quite literally, wouldn’t have to sit on my hands.
I’m imagining a Stim City. Or a stim-in, on a campus lawn. Rubber bands, tin foil, spinning tops, hands free to roam.
08.10
(ETA: This is me musing about not-so-happy childhood things. With metaphor.)
How to tell whether it’s an anxiety attack, whether it’s an asthma attack, whether it’s a spiritual attack:
Lesson one: It is always a spiritual attack. This is what a pastor tells me when I’m seven. We live in Lawrenceville, near a shallow creek that I cannot visit, and we’re always church-hopping — until now. It’s a large church, the kind that broadcasts its sermons on television, and my mother worries that a camera will immortalize her while she’s blowing her nose. After service, my parents force me onstage during an altar call. I carry a beanbag doll that I rescued from the Salvation Army. Frightened, I hover behind the pulpit, choking on excess mucus, the pastor’s words escaping with the air.
It’s always a spiritual attack, repeats the pastor, who is now my pastor.
One day turns into many days missed from school. I can’t go there, I tell my parents. I’m sick.
It’s a lactose attack, says my doctor. My father thinks she’s a quack. He takes me home and has me drink milk and eat cheese, conjures a self-congratulatory smile. See? he says. And then he calls the pastor, or a pastor, or my pastor. I’m never quite sure which, or whom.
It’s a spiritual attack, says my father. We pray, and later I vomit.
I am hardly in school when I’m seven. When at recess, I try to follow a girl named Brittany because she wears hair ribbons, ribbons dense and packed as a poodle’s coat. I find them fascinating.
Brittany does not find me fascinating, nor does she find my orphan baby doll fascinating.
It’s got beans inside, I tell her.
Your head’s got beans inside, she tells me. She runs away.
Later, the shoves and punches come, my body wriggling beneath the violent hands of older boys that I do not recognize. I come home from school, crying, upset that I’ve been spiritually attacked. My mother lends me her bible and her kaopectate. My father lends me his albuterol and his collection of wheat pennies. Coins line the bathroom floor. I breathe, then not breathe, and my mother runs the shower at full temperature, my father gently nudging my face toward the steam. I wheeze in, wheeze out, long gasps, tired gasps, spiritual gasps. The air doesn’t like to come. Satan makes air distant.
There are hospital visits, but never school. I won’t allow school. Satan won’t allow school. Jesus won’t allow school. It’s almost as though we have a pact. I stay home, puke green stuff, struggle to breathe, press in the stomach of my beanbag doll, spin pennies across my dresser. These are my days, and I’ve come to accept them.
Lesson two: It is never in your head, unless you are possessed by a demon. This is the news my father brings home from a pastor. He applies the spiritual logic to me, a bittersweet syllogism. Later, there are people. Later still, there are hands, on me. Later still, I am on the floor, pressed down, surrounded by the elbowing sound of tongues. I am sobbing, not from Jesus, not from Satan, but from hands.
Lesson three: You are not praying hard enough. We are back north, and our new pastor tells us this from the podium of a high school auditorium. Church bulletins crinkle in the hands of the parishioners, hands that grate against the hum of the spiritually dead microphone. The air is never still in this place, and I struggle to catch it.
I am seven. I am gasping. I am sinking. I am fighting the hands, the godly hands, the demonic hands, the hands that pry and shriek and grieve against my face. I am dead, but I am not dead.
07.28
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*
07.01
Yay, a post! I miss writing in this blog. Hello, blog.
I figure that a good post-hiatus post might involve what I’ve been up to lately that is non-dissertation — that is, teaching. This past quarter, I taught an undergraduate section of Intro to Disability Studies, the second time I’ve taught this course. And in the fall I’m teaching a special topics in literature course called Authoring Autism. I kind of figure that folks who read my blog will have a lot to say about the autism class in particular.
Above is an image of my course flyer — I’ve been posting these across campus. I decided on going the “famous people who might have been autistic” route not because I like to retrodiagnose dead people (I loathe doing that, actually), but because 1) retrodiagnosis is one among many topics I’d like my students to critically engage this fall, and 2) I was hoping to attract students, especially from the humanities, to my class. Class enrollment is up to 18 people, which is pretty good for a special topics course. < /explanation>
I’ve drafted a syllabus for the course, which you can find here in PDF format. I’d like to emphasize that it’s a rough draft, and I’m already making changes in the assignments, schedule, and readings (i.e., I’m adding in materials from the neurodiversity special issue of DSQ, giving students more memoirs to choose from, figuring out potential guest speakers, etc.). I’ve also included my course description behind the cut — at root, this is a course that considers how autism and autistic people are represented across media.
I am, however, open to suggestions. Ohio State terms run 10 weeks in length, so we’re limited with our time. But I’d very much like to find out what others in the blogosphere would like to see in a class like this.
continue reading…
04.23
I wake up every morning wanting to blog. And then I don’t — mostly because being ABD (i.e., being in dissertation mode) has required a rather lengthy adjustment process. I like dissertating, so far anyway. But it’s life-consuming.
Our local ASAN chapter protested Autism Speaks earlier this week. I created the following YouTube video, which documents the story.
02.08
I’ve been going through old computer files lately, and I realized that I never posted the paper I read at the Feminism(s) and Rhetoric(s) conference that took place at Michigan State this past October (the week before our protest of the Autism Speaks walk, actually). So, here it is — my essay.
—-
“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.
12.31
I have to admit something that is perhaps a rather shameful thing for a self-professed bibliophile to admit: I don’t like libraries. Or, perhaps I should phrase that as I dislike going to the library. It’s been a lifelong process — getting me to go to libraries (and stay in them longer than five minutes). Though certainly not to the same extent as, say, frat parties, libraries involve wrangling with a bunch of social norms. And I’ve never been one for social wrangling.
Perhaps the one thing I like most about Ohio State is that I’ve rarely had to physically stay in a library while here. I’ve been able to search for and reserve books online. I simply dart into the science and engineering library, grab the book I’ve digitally reserved, and dart out. Very little interpersonal interaction involved.
Libraries, at least at the educational institutions I’ve attended, have always involved lots of people and lots of distractions. And though reading rooms tend to be quieter than cafes or street corners, the silences are overwhelmed with noise — pages turning, clocks ticking, coughs languishing, air circulating — and the visual stillness is overwhelmed with eyes and other unreadable body parts.
Nonverbals abound in libraries. Nonverbals and I don’t always get along.
Upon learning that 1) the library was open today and 2) hardly anyone was there, I ventured out. I managed to stay for nearly three hours, probably a record of some sort for me. I went there to work on my dissertation prospectus, which is ending up a multimedia project. Instead of sifting through book-like things, I had aimed to record photos, video, and ambient noises. Eventually, I located a suitably lonely table, turned around, and found myself parked in front of several rows of the Journal of Mental Deficiency Research. (Which was right near Autism, the journal.)
I defaced some scholarly journals with post-it notes.
Journal of Mental Deficiency Research, with a post-it that says 'pathology (to the max)'
In one of the "enlightening" Autism articles from 2003, an author mused about an autistic child's "entry into the domain of symbols" (a.k.a. so-called normal speech, you know, the only kind of symbolic thing that's worthy of anyone's attention). I went notecard-happy on several cognitive studies/psychology periodicals, including the Journal of Traumatic Stress. DX that, symbol arbiters.
This collection was in dire need of some pathologically ineffectual charity. And I had no shortage of pity-laden bandaids.
Recycling that tired idea of there being one "true language." Because goodness knows that what autistic people use isn't language, isn't even symbolic.
Try harder: Advice for researchers everywhere, myself included.
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