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Some thoughts on eye contact

I’ve been wearing eyeglasses since the age of eight. The narrative is a familiar one: I couldn’t see the chalkboard at school, walked into telephone poles, made head contact with dodge balls more often than usual. I remember my first trip to the optometrist, a small balding man with a penchant for incomprehensible soccer truisms, and I also remember him announcing that I had a birthmark in my left eye in addition to very high eye pressure, the latter a potential risk for glaucoma.

I never had a gradual adjustment period with my glasses — the doctor insisted that I could only remove them when I bathed, slept, and played soccer (and I didn’t play soccer, and wasn’t quite sure why he kept droning on and on about soccer). Once I started wearing the glasses — bright pink frames encasing mammoth lenses — colors grew darker, faces became less fuzzy, and I could see the contours of my hand again.

Shortly after I’d adjusted to re-seeing, my younger brother got ahold of my glasses and popped out one of the lenses. My mother hadn’t the time on this particular day to purchase an eyeglass repair kit, and suddenly, without my glasses, I couldn’t filter between sounds. One of my parents would speak to me, the sound growing as muddled as my vision. My father, also known as The Impatient Parent, grew angry and very loudly demanded to know why I wasn’t answering him. After I replied that I couldn’t hear very well without my glasses, he grew angrier and sent me to my room.

I reflect on this particular day of my third-grade life, trying to recount what I heard exactly. My senses have always had a tendency to jumble, to blur: sometimes I’m unable to discern which “input” is overloading me, or one particular input converges with another, or I just totally lose track of all input and enter trance mode.

Yet, I think that sensory dysfunction wasn’t — and isn’t — the whole story here. Lately, I’ve been super conscious about my eyes, where they look, how often they dart, whether they meet with another pair of eyes. And while I’ve always felt that eye contact is “unnatural” for me, I’ve never really thought about why this is so. And tonight, during book club, I realized where my default “gaze” landed in a group where autistics are the majority: the lips.

I can’t decipher a person’s emotions based on the dilating of pupils, the half-closure of eyelids, the flicker of irises, the subtleties of eyelash movement. But I can recognize a smile, a smirk, a frown, a tongue. And if I combine those lip movements with the volume level of a person’s voice, I’m much more likely to reach an accurate emotional interpretation than I am if I’m focusing on eyeball gymnastics. I wonder if the eight-year-old me interpreted hearing synaesthetically, as an alternative form of nonverbal communication, one that made more sense than pure auditory listening. As a child, I’d sometimes move my lips and would assume others could “hear” me — because I sometimes couldn’t discriminate between the words in my head and the words escaping my mouth. Even today, I have voice modulation issues: it’s difficult for me to speak in the perfect “inside voice,” to recognize whether I’m too soft or too loud. Even when I whisper, my voice sounds loud to me.

Certainly, my eye contact and voice modulation “differences” were more visible and pronounced when I was younger — but, in some ways, those differences were more acceptable then than they are now. An eight-year-old who refuses to look at her teacher and speaks in mousy (and/or non-existent) tones is read as “shy” and “cute” and “silly.” It’s not so cute and silly now.

My eighth-grade Drama/English teacher made me her eye-contact-and-voice-projection project. I’d stay after school and she’d force me to look at her. While talking loudly. While robotically moving and hand-ticcing. I soon became her body-language project as well: I was perpetually stiff and stimmy.

This past summer, I pulled out videos of my eighth-grade performances, plays where I somehow managed to land large roles. Upon hitting play, I reeled away from the TV screen, semi-mortified: my hand gestures looked as if I were doing a really bad version of the robot dance. And my voice — I couldn’t quite see my face, so I couldn’t quite read or hear everything — but it sounded very monotone-like. Very marked, in the way we might think of difference being marked or markable.

“Stare at the bridges of their noses,” Mrs. H would say. “Look at the back wall. Move to stage left. No — the other stage left. Lower your hands. Hands at your sides — put your hands at your sides. Pick up the quill — and stop wringing your hands. Stop wringing your hands. Count to three between each sentence. Count to three after every punctuation mark. Louder. Louder. Look me in the eye. ”

I feel as though I’ve naturalized “mortified,” as though I have embodied a state of mortification. Watching old videos and looking at old photos is almost painful — and yet, it shouldn’t be.

I sometimes wonder what would have happened if I’d been diagnosed much earlier, in kindergarten. Who would I be now? How much more or less would the autism have been beaten out of me? Would I even attempt to pass? Would I have felt more confident in being the autistic me, rather than the faux-NT me? Would I like and appreciate my younger, videotaped self more?

My cousin trying to turn my face toward the camera

Stimming is more fun than Santa

I realize that, lately, a dominant theme of this blog has been about de-binarizing disability. Yet, being a binary would be so much easier to identify with than being an autistic who feels compelled to pass, yet so often fails (and fails hard). (And I suppose that this “easiness” is the problem with binaries — so unrealistic, so simplistic, so twofold.) Sometimes I wonder: do I have autism or passism?

Wordle

A Wordle representation of my blog:

I like the way Wordle emphasizes the most-used words in my blog. Wordle is sort of like an image-based invention activity, in a way. In looking at how these words are arranged — words that I’ve already used — I wonder at how I might balance the ratios in further writings. I also wonder about what’s missing, or what’s hardly visible: words such as rhetoric, theory, disability, and, most shockingly, Jeff Lynne and ELO. I need to turn up the dial on my perseverative brain!

Self-indulgent narratives

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 autistic 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. Still, note the scare quotes around “ethical.”)

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. Kanner, Asperger, and Bettelheim frequently described autistics as being inherently self-centered, trapped in their own worlds, imprisoned in their asocial bodies. 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]