Self-indulgent narratives

Posted on October 26th, 2008 in blog rants by Aspie Rhetor

I’ve been reading a lot of stuff lately — and by stuff, I mean several articles that, per academic ritual, I should probably cite right here — stuff that deals with the role of the author in a narrative, with identity and positionality, with the influence of the researcher upon the researched, with authorial interpretation.

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:

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

The curious incident of the vote at the book club

Posted on October 25th, 2008 in Uncategorized by Aspie Rhetor

The first time I read Mark Haddon’s The Curious Incident of the Dog in the Night-Time was by force: I was in a graduate seminar on disability studies and the novel was part of the assigned reading. Prior to that point, I’d made the firm decision to refrain from reading it. The novel frequently came up in Livejournal, Wrong Planet, and Aspies for Freedom. And while some spectrumites thought positively of the book, it seemed to me that the negative remarks were enough to prevent me from being curious about Curious.

I don’t hate the book — but I don’t know that I like it, either. In fact, I don’t know how to respond to it. I feel as though I only know how to respond to the response to Haddon’s book. I don’t trust non-autistic audiences with it. And that statement of “trust” makes me feel sort of snobbish in a way, I suppose, but it comes from a very real place of hurt and frustration.

My first IRL, offline experience with Curious occurred prior to reading it. I was a Master’s student at the time, and I’d made the decision to tell no one of my Asperger’s. Instead, I went along with the imposed labels of shy and neurotic and OCD and friggin’ weird, man. (Any time someone hears me talk about ELO, they tend to walk away with the friggin’ weirds.) I was talking with a professor about teaching composition, and she started detailing some of the difficulties she’d encountered as an instructor, and some of those difficulties were students with LDs and ASDs. The moment I heard her mention Asperger’s, my head grew sort of faint, and I made the impulsive decision to come out. I started the coming out process by saying something to the effect of, “One of my teachers once suggested I had Asperger’s…”

She abruptly cut me off. You? Have Asperger’s? she balked. You’re such a good writer. You should take that comment as an insult.

I was completely taken aback, unsure of how to respond. At that moment, I suddenly didn’t want to be Aspergian any more — I was ashamed of myself, and I did my best throughout the rest of our conversation (or, rather, her conversation) to feign neurotypicality. As I turned to walk away, she suggested that I read Curious. I was obviously nothing like the main character in that book, and thus I couldn’t be autistic.

Fast-forward to the day when I was forced to read Curious. The book scared me. I knew I was about to enter into a non-autistic narrative of an autistic, and while I gathered that the author’s construction of Christopher wasn’t meant to essentialize spectrumites, it had nevertheless served an essentializing function for me. Moreover, I feared that, after reading it, I would begin to doubt my own diagnosis. Autism diagnosis is based on behavioral observations, and not on “objective” brain scans or blood tests. What if all of my doctors were idiots? Did they think that I was the female Christopher? Because I’m not the female Christopher, and if they thought that I was the female Christopher, then I would need a new neuropsych eval, post haste.

I hate that I have to defend my Asperger’s diagnosis to an uneducated public who refuses to be educated. I’ve been so brainwashed into being socially appropriate that the huge measures I take in order to appear neurotypical are largely invisible to the people I’m in contact with. Consequently, other than seeming weird or shy, I don’t seem to be much of anything. I’m certainly not the autistic who screams in supermarkets: I’m the autistic who mentally shuts down in supermarkets, the one who can’t talk to her husband by the time she reaches the produce aisle because the lights and noises have become one inseparable sense in her brain, the one who starts to taste sounds and choke on lights, the one who squeezes her arms and wrists so hard that they bruise, the one who is tiny, mute, and virtually invisible, like every good girl should be. I doubt I even know how to scream. If I can hear my voice, I think that others can hear it too, and I often talk in mumbles and whispers, unaware that I am talking in mumbles and whispers, unaware until someone briskly tells me to “speak up.”

Because I am silent and invisible, because I don’t fit the Christopher-esque mold, I have to defend myself and my diagnosis. And I realize that this isn’t the fault of Asperger’s: it’s how we think about Asperger’s, how we want to make neat little categories and stick to them.

Back to the book: When I first cracked open the seizure-red cover of Curious, I was immediately greeted with several book reviews, each of them sappy and gushy. I remember, upon reading them, having the instinctual desire to vomit.

Fast-forward to this week — two days ago, to be precise. I’m attending a book club for people with AS/HFA, a book club I’ve been attending since early summer. This book club has grown from a core of five aspies + one NT moderator to eleven aspies + four NT moderators. At this meeting, we’re voting on what our next book will be. We’ve just finished Twilight, a teenage vampire romance novel that half of us like and the other half want to burn (and I’m the middle one — the one who just wants to gag). After a couple rounds of voting, we’ve narrowed things down to two possibilities: Catch-22 and Curious.

Before the final vote, three aspies voice their vehement objections to Curious. They maintain that it’s the most simplistic, vilest, dumbest, evilest book they’ve ever read. We vote, and Curious wins — because two aspies have abstained from voting, and all four NTs cast their votes for Curious.

One aspie totally flips out in authentic autistic fashion, screaming and jumping and flailing. Another covers her ears. Two others start yelling. Two leave the table. One looks bewildered. My hard drive shuts down, then crashes, and I mentally leave planet earth, effectively mute and literally senseless.

I don’t remember much else, except that once my brain foggily deciphers the words “next time,” I grab my book and run, and a few alarmed people chase after me asking what’s wrong, and all I can hear and see in my brain is the f-word, which I try very hard not to say, so I run outside without my jacket, and the cold jars me, and one of the moderators tries to calm me down, and I mince my words, mince my breaths, mince my papercuts and bruises that I don’t remember acquiring, mince, mince, mince.

It is now today, and I have again cracked open Curious, again by force, reopening one of the papercuts I unknowingly formed with Twilight while tranced the other evening. I sit here, thinking about audience and its intersections with empathy, that favored NT buzzword. And I read the bylines:

“This original and affecting novel is a triumph of empathy.” — The New Yorker

“Mark Haddon’s portrayal of an emotionally dissociated mind is a superb achievement. He is a wise and bleakly funny writer with rare gifts of empathy.” — Ian McEwan, author of Atonement

“Exceptional by any standards. Haddon sticks rigidly to the limits imposed by autism without sacrificing literary viability. When we look at the world through Christopher’s eyes we see it more clearly and understand ourselves better. What more could you want of a book?” — The Sunday Telegraph

“Wonderfully surreal…. Heartbreaking and inspiring…. It is hard to think of anyone who would not be moved and delighted by this book.” — Financial Times (London)

Mince, mince, mince.

Empathize with this

Posted on October 22nd, 2008 in blog rants by Aspie Rhetor

So, one of the popular medical theories surrounding the “puzzle” of autism spectrum disorders involves theory of mind — or lack thereof. Possessing a theory of mind involves the illusion that one can understand what another human being is thinking or feeling, a neurotypical ESP of sorts. Theory of mind largely concerns empathy, the ability to place oneself in another’s shoes, so to speak. Many autism specialists, among them Simon Baron-Cohen, argue that people on the autism spectrum either lack a theory of mind or have an impaired theory of mind. Auties and aspies supposedly cannot empathize with or predict the NT world, and they thus have a whole bunch of communication issues.

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 and empathy
[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).

PETA: Got idiocy?

Posted on October 20th, 2008 in blog rants by Aspie Rhetor

PETA (People for the Ethical Treatment for Animals) launched a new ad campaign three weeks ago in their fight against cow milk:

Got autism?

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.

Keep on chugging!