perseveration – autistext

First-class autistic, second-class citizen

I am running late. Again.

The emails I compose are all the same. I’m sorry for my delay in responding to you, I write. And then I stare at my screen, sometimes for two hours, sometimes for two months, and try to remember my excuse. Why am I late? Which metaphorical crowbar wrenched its way into my mental machinery this time?

Lately, I conceive of my days as a series of perseverative loops. The new job, the new home, the new and utterly non-autistic community. I cannot pry myself from anything. One egg, one piece of toast, and one butter cookie for every single meal. I read each Facebook status update 47 times before and after posting. “Let’s do something together,” a new friend or a new colleague or a new frenemy will write. And then nine days pass, or 39 days pass, and I’m still working on a two-line email response. Perseverative loop. Lather, rinse, repeat.

I can’t remember the last time I ate a vegetable. I’m not distressed by this — I’m more distressed by other people’s distress. Their jokes about anorexia throttle me into monologue mode, and I launch into impassioned rants — sometimes about disability studies, sometimes about feminism, and sometimes about how much I wish the F-word were a tangible object that I could lob at ableist, self-important hacks.

Oh, F-word. Materialize for me now. I repeat this line to myself. 47 times. 47 times.

The days are a blur. I cry most nights, wishing I were somewhere back in time, a time when I could wrench my fingers, rock my body, and speak without inflection. In a bookstore. In public. With half a dozen others who wrench their fingers, rock their bodies, and speak without inflection. I miss this autistic chorus.

A protester holds a sign that reads PROMOTE SELF-ADVOCACY — This.

But I am here, not there. Autistics Speaking Day has come and gone, and here I am — still writing, still perseverating, still ensconced in my words and my tears and my veggie-less existence. My sense and use of time isn’t on par with the mythical norm. I am learning, or trying to learn, to take comfort in my lateness, to interpret my lateness as function without the dys, as function minus the –tio and n‘s. Fuc(k) function.

There are shitty moments on repeat in my head. The colleague who berates me for asking her to repeat instructions. The potential therapist who calls me a “phenomenal woman” for having the “courage” to lead a disabled existence. The internet trolls, plural, who variously tell me that I’m not autistic, that I’m ungrateful, that I lack the capacity to have capacity. The Autism $peaks undergraduates who, in response to me telling them how hurtful they are, claim that I “cannot silence” their “love.”

Perseverative loops, cumulative loops.

What I consider accommodating, they consider unreasonable.

What I consider insulting, they consider complimentary.

What I consider hate, they consider love.

What I consider feeling and compassion and emotion and just plain being in the world, they consider pathology and blight and madness and something just plain worthy of extermination.

And I wake up in the morning, ride the bus, step into a classroom, feign attention with my flat mousy voice and unruly hands. There are lists to make, silences to repeat, latenesses to embrace, F-words to embody. I take this as a lesson in breathing.

Before we go…

Kelly Groucutt, bass guitarist and co-vocalist for the Electric Light Orchestra, died Thursday afternoon from a heart attack. He was only 63.

This news came as a crushing blow. Kelly joined the band in 1974, right after Eldorado, and stayed until 1983. He was a large part of the well-known, popular, successful ELO line-up — my favorite line-up. Kelly’s voice perfectly complemented Jeff Lynne’s.

ELO was a large part of my childhood, and still occupies a rather sizable portion of my adult life. I’ve been hooked since about the third grade. Kids often teased me for obsessing over ELO, for claiming Jeff Lynne as my so-called “crush.” I was a child of the 80s and 90s. ELO broke up when I was two. Being autistic probably predisposed me to seek out adults more than my peers, and I frequently wished that I’d been born in the 60s — because people my parents’ age were the only ones willing to tolerate my monologues about Roy Wood’s hairstyles or the metaphorical significance of “Livin Thing.”

During my adolescence, I would only listen to music that I could somehow connect back to ELO. (e.g., The Moody Blues were acceptable because Bev Bevan, ELO’s drummer, played with Denny Laine and the Diplomats for a bit, and Denny Laine eventually sang lead for the Moody Blues. Likewise, Denny Laine’s connection to Wings made Paul McCartney acceptable, though McCartney was also acceptable because Jeff Lynne produced his album Flaming Pie and also worked on the Beatles Anthology.) When I dropped out of school in ninth grade, Jeff and Kelly’s harmonies — and the histories and trivia surrounding those harmonies — carried me through some emotional rough patches. My perseveration helped to keep me grounded in a lot of ways.

In eighth and ninth grade, I grew desperate to have ELO posters, to amass anything and everything related to ELO, no matter how tangential. I collected LPs from flea markets and proudly displayed the duplicates as if they were posters. I also began drawing ELO members and affixing their cartoonish likenesses to my walls:

Richard Tandy & Kelly Groucutt. Drawn when I was 15.

My drawings make me laugh when I consider the amount of detail I pored into sketching the band members’ hairstyles. Such detail presents a stark contrast with their penciled faces, which are amazingly blank and bare.

Jeff Lynne drawing Jeff Lynne. Drawn at age 15. I mailed this to him with a birthday card. He never responded.

I’m still reeling from the shock of it all — of Kelly Groucutt not being here. It’s hard to fathom. My weekend consisted of me listening to Kelly-heavy tunes such as Sweet Is the Night and live versions of 10538 Overture. I’ve pulled out his 1981 solo album, his OrKestra songs, his work with ELO Part II/Orchestra. All such lovely, lovely songs.

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]