aspie rhetor

A delayed post on my end, but I have my candidacy exams as an excuse. (I’ve completed the written portion, and I move onto the oral this Thursday, yikes.)

On October 11, I helped to lead an ASAN protest against the Autism Speaks walk at Ohio State’s campus. As I now have the benefit of being three weeks removed from the protest — as well as reading/hearing/seeing reports of other ASAN-led protests across the country — I feel a sense of accomplishment. I’d certainly never organized a protest before — and I’d only attended my first protest this past June, which was a disability rights protest against Ohio’s proposal to cut funding for community supports (and Ohio’s proposal to increase funding for nursing homes, ack). In June, I took notes about chanting and marching, and the chorus of Our homes, not nursing homes! is still present in my brain. (We were loud. And we were quickly hoarse.)

I suppose, on some level, I feel perpetually frustrated here at Ohio State. Our protest didn’t receive media coverage, which was a disappointment — though, to be honest, I’m not the sort of person who likes to be noticed, per se. (I’m not media material. I’m quiet-and-behind-the-scenes material.) But I also suppose the good news is that, really, Columbus’s Walk Now for Autism hardly received any media coverage itself. There was a quick spot on NBC4 (which was to be expected, given that one of their anchors has an autistic son and the station itself co-sponsored the walk), as well as a photo slideshow on The Dispatch website (the Columbus newspaper). Though my search for pro-Autism Speaks media coverage wasn’t entirely exhaustive, I doubt there was any other coverage (at least any other coverage of note). I taped all the news shows that evening, and no one else mentioned the walk. NBC4 seemed to monopolize it.

But back to the frustration: On campus, Autism Speaks seems to be everywhere. And it’s partly a matter of manpower and resources — they’ve got more than we do. By far. And our university president keeps uncritically singing their praises (to the point where we’ve drafted a petition and plan on standing on a street corner and asking passersby for signatures). I tire of seeing their flyers daily — flyers that variously portray autism as an epidemic, a puzzle, a burden on taxpayers, a fate worse than a combination of fatal situations. And I grow even angrier when I see flyers that read Got questions about autism? We’ve got answers!

Dear god. My colleagues, students, and professors might go to these people for answers?

I also love (not) how some of their past campus fundraisers have included things like Mary Kay parties, sorority cookouts at midnight, or shop-a-thons. Their events sound so autistic-unfriendly that, if it weren’t so egregious, I’d find it utterly hilarious.

I’ll end this post with photos. Several of these photos have circulated the blogosphere by now, so I’ll try and post those that weren’t featured (that I know of) in other blogs. The protest was very successful: nineteen people braved the throngs of “puzzled” walkers. We endured angry honks, middle fingers, haughty walking mothers, and entitled white men yelling, “You’re a bunch of f—ing idiots!” But we also had productive conversations with parents, and we were even thanked by autistic people who had been dragged to the walk.

This is me holding a sign reading "Autism Speaks does not speak for me"

Tim Jensen holds an orange sign that reads "Nothing about us without us"; Chris Lindemann holds flyers; Kate Comer holds a sign that reads "Diverse NOT Diseased"; and Jonathan Buehl holds a yellow sign that reads "Nothing about us without us"

Jonathan Buehl; Brenda Brueggemann with a sign that reads "Disability Rights"; me with a sign that reads "I can speak 4 myself"; Jason Smith with a sign that reads "First class autistic, second class citizen"; Justin Rooney with a sign that reads "I can speak for myself"; Meg Evans with "People not puzzles"

Jeffrey Strasser, "*Autism Speaks* against us"; Stephanie Ballam, "First class autistic, second class citizen"

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…says someone in the midst of studying for her candidacy exams.

Everything is really loud. The wind clanging the blinds together. The guy upstairs walking to what I presume is his refrigerator, given the sound patterns. Me typing. Me talking — even when people tell me to speak up. (I’m always loud. Don’t they get it? Loud, loud, loud.) Cars — need I say more about cars? The hallways at school, filled with feet and hands and mouths and papers and hair and eyelids and trashcans and mop buckets and plastic wheels and cellphones and clocks (some living, some dead) and doors and windows and air units and keyboards and beeps and teeth and light switches and flickering fluorescents and benches and…

I am home today, writing. And reading. I’m just wrapping up a five-week writing course, a course that I taught and enjoyed and feel exhausted over. The quarter system is fast-paced. The half-quarter system is even more fast-paced.

Scissors make noise. As does cardstock. But cutting out rainbow infinity signs is a welcome break from grading, a more welcoming sort of noise:

Crickets.

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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. Asperger’s probably predisposed me to like adults better 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 aspie special interest 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. 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.

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What is it with the autism spectrum and the word umbrella? Talk about a mixed metaphor. When I think of the metaphor that is “spectrum” — that is, in literality, a band of light — the umbrella trope perplexes me. If one is under the umbrella of the autism spectrum, we usually interpret that to mean “one has a type of autism, which is a disorder with various presentations.” But I keep getting a conflicting image in my mind — as if an umbrella is shielding us from a light source? Or the light source forms an umbrella? Or…?

It’s interesting that, in addition to textually referencing ASD in the context of umbrellas, we’re also starting to graphically represent the spectrum as an umbrella:

[Link]

Per this visual representation, “of” becomes a possessive, as if the umbrella belongs to the autism spectrum (i.e., the umbrella of the autism spectrum = the autism spectrum’s umbrella). Still, I fail to see the connections between umbrellas and spectra in this visual. So, um, maybe the spectrumish umbrella should look like… this?

Of course, why mix two metaphors when you can mix three?

[Link]

So — not only is the spectrum something that can be encapsulated under an umbrella, but it is encapsulated under an umbrella that comprises multi-colored puzzle pieces. I’d like to say that the creator of this metaphoric monstrosity (eep! metaphor #4) created the puzzle motif as a comment toward the horror of mixing metaphors nonsensically — that is, that the trope-joining of umbrellas and spectra is puzzling, indeed. However, the puzzle motif obviously relates to the “autism as puzzle” metaphor, a metaphor that portrays autistics as “missing a few pieces.” </gag>

Of course, why not take the spectrum-umbrella marriage a [metaphorical] step further? Why not medicalize umbrellas, just like we’ve done with physics and rainbows and wavelengths?

[Link]

According to this umbrella-spectrum model, different cloth panels of an umbrella point toward specific learning differences and difficulties, a non-rain-proof continuum that makes little children become wet and distressed.

Boy with weird hair says: And I thought umbrellas were to stop me from getting wet!
Girl with missing bottom lip says: Too late. You are wet!
Girl with string hair says: Hey! That’s not very nice!
Girl with missing bottom lip replies with: Man! I always seem to say things wrong…

Perhaps if this clinical umbrella-spectrum were visually designed to be missing a puzzle piece or two, this trope-fest would make more sense? </sarcasm>

This mixed-metaphor, umbrella-spectrum rant isn’t limited to random images that I unearthed on the interwebs. People are writing books about the autism spectrum umbrella:

[Link]

This visual makes me even more confused. Which part is the visual representation of “spectrum”? Which part is autism? And what’s the metaphorical significance of the umbrella, of the huge doomsday wave? Is autism the doomsday wave? Or is the wave the spectrum that is autism — as in, a pun on the physics understanding of wavelength? And maybe autistics are like unique little wave crests, all crashing down onto helpless NT umbrellas? Or maybe autism is the umbrella, which is also a spectrum, which is also a challenge, and the wave is a challenge too, and it’s about to drown out the helpless, challenged, little autistic girl on the beach? Or maybe the author ran out of title ideas.

More umbrellas, more autism, more rain:

[Link]

Erm. This image strikes me as everything that… isn’t… lovely. I found this on autismparents.net, which linked to an article concerning the finances of families with autism.  Apparently, money falls under the umbrella that is the autism spectrum?

In the context of the original article, autism is represented as a money-hungry entity. (So, in addition to stealing children’s souls, autism likes to rob parents of their hard-earned incomes? This image would make Jenny McCarthy proud.) Another metaphor: saving money for a rainy day. Here, the rainy day has come, but the autism spectrum umbrella thing-a-majig has taken the money, so it can’t really be used on a rainy day.

Why must tropes be so complicated? Autism makes a lot more sense to me when I think of it as neurological diversity that presents with a wide variety of behavioral manifestations — makes a lot more sense than thinking of autism as an umbrella owned by a spectrum that may be physics-related but may also involve large quantities of water in the form of rain and/or tsunamis that also happen to like mooching credit cards and/or drenching and drowning children.

Yeah. I think that my explanation is more concise. And more accurate.

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I’ve noticed a common cover design in recent autism books: that of a child, usually a boy, hovering near a body of water. In fact, the more memoirs I read, the more I tend to notice this autie-water depiction. These representations appear on books I love, books I despise, and books I feel luke-warm about. It isn’t as though the autie-water portrait appears solely on curebie diatribes or solely on neurodiverse musings. And so I wonder about these aquatically-oriented representations of autism.

Born on a Blue Day by Daniel Tammet

The RDOS Aspie Quiz asks whether or not I have a fascination with flowing water. I’m not entirely sure how this relates to autism, but perhaps it has to do with perseveration, or attention to detail, or the fact that flowing water is very entrancing and makes really cool whooshing sounds?

Reasonable People by Ralph Savarese

Other than the quiz-question theory, my only other thought behind autism on the beach involves metaphor. Does the water symbolically represent autism somehow? Why all the blue? Are we supposed to feel a certain way, think a certain way, assume a certain way before we read these books? An old, overused adage tells us that we should not judge books by their covers — an adage perhaps devised by a cantankerous, ne’er-do-well book salesman? But we do judge books by their covers. And I wonder what we’re supposed to judge about autism on the beach.

Weather Reports from the Autism Front by James C. Wilson

I know that Wilson’s cover photo is an actual photo of his son, a happy moment from a vacation. The cover makes somewhat more sense with this tidbit of knowledge. Yet, I’m very surprised by the puzzle-piece motif on Wilson’s particularly beachy cover: despite being a parent narrative of an autistic son, I consider his work largely neurodiverse in scope. In fact, one thing I most appreciated about Wilson’s work was his frequent reference to autistic bloggers. His (positive) mention of Autism Hub blogs far exceeded references to medical manuals and statistics. He did not portray his son, nor autistic individuals generally, as a medical mystery in need of research and neurobiological scrutiny. Though Wilson claims that he cannot fully understand his son and that his son cannot fully understand him, he portrays NT-autie communication in a way that speaks to a social, neurodiverse model of autism rather than a model that seeks to eradicate autistic difference in favor of a wholly NT understanding.

Thus, the puzzle motif here is quite puzzling.

Making Peace with Autism by Susan Senator

Of course, there are many people and protocols involved in producing, editing, and publishing a manuscript, discussions and decisions that readers simply aren’t aware of, aren’t privy to. How much influence did Wilson hold in the design of his cover? His photo made the cut — but was this the photo he was originally hoping to use? Did he vie for the (ab)use of the color blue in his cover? Did he hold any sway in the puzzle configuration? Was this his cover or his publisher’s cover?

The cover of Daniel Tammet’s Born on a Blue Day makes sense: the blueness of the cover directly relates to the title and perhaps the synaesthetic topic of the memoir. Moreover, more so than the other images offered here, Tammet’s cover focuses intently on sky. Ralph Savarese’s Reasonable People also shows more sky than water, with the child’s face being framed by the expanse of sky. With Senator’s cover, it’s hard to discern whether the water ends — and, interestingly, in all of these covers (with perhaps the exception of Wilson’s), expanse or limitlessness seems to be a rather large theme.

Women from Another Planet? by Jean Kearns Miller
[omg, women can have autism?] </sarcasm>
[ETA: my sarcasm isn't directed toward the book -- which is awesome -- but toward the statement before the sarcasm brackets.]

DJ Savarese, Ralph’s Savarese’s teenage son, wrote the last chapter of Reasonable People. DJ uses FC to communicate, and a large focus of the book is dedicated to legitimizing FC as a potential channel of communication for non-verbal auties. In the context of the book cover, I find this particular passage from DJ’s chapter to be quite illuminating:

“I dream of being a political freedom fighter. I read that pure real people in especially just free waters insist my real decisions really wasted. They think well respected, tested as normal kids are the okay to teach ones. They forget those lost kids. They’re the ones like me who poke or look like they’re not paying attention” (432).

The mention of “free waters” following “being a political freedom fighter” really strikes me here. This is an image I can digest, can embrace when considering autism on the beach. There is something freeing about water, calm about blue — peaceful, to borrow an idea from Senator’s book cover.

Yet, I don’t think that the audiences for these books — or other books that sport autism-on-the-beach covers — will immediately recognize or infer the freedom element of these cover illustrations. As calming and peaceful as blue is, as free as it is, I think blue also runs the danger of being melancholy, solitary, bluesy. I also wonder what stereotypes are reinforced by these images: in each, the (presumably) autistic individuals stand alone by the water as if they are locked into their “own little world.”

This isn’t to say that autistics never go off into their own little worlds, that autistics never stand alone, that autistics never love water and beaches. But I daresay that the frequency of this alone-on-the-beach-and-deep-in-thought imagery constitutes its own weird little genre. And any time a metaphor becomes popularized in autism discourse, I think we need to examine it, to rhetorically analyze it and question it.

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I wrote the following blurb for the Asperger’s/HFA group I’m a part of, Aspirations. Some version of this will be appearing in the December newsletter. Last week, I was able to spend some time at the NATTAP Conference (Network of Autism Training and Technical Assistance Programs).

On Friday, November 21, I hopped on the #2 bus and headed toward the convention center, on my way to see one of the keynote speakers at the NATTAP Conference—Temple Grandin. I held a name badge in hand, a badge that wasn’t my own, largely owing to the fact that I was too miserly to register for the conference. Once I walked through the front doors, I pretended to be Jeff Siegel [an Aspirations facilitator], and no one noticed the misnomer, excepting one creepy guy who said “Hi, Jeff” as I walked past a table in the exhibition hall. After that point, I removed my fraudulent tag and moseyed into the auditorium.

The session began nearly 15 minutes late, and then started off with four speakers who, though I’m sure were important, relied entirely too much on PowerPoint and monosyllabic words. I tuned them out, instead fascinated by the lighting effects in the room. The stage had two large fiberglass panels on the ends, each of which slowly turned different colors, hushed reds and purples and greens. Center stage and affixed from several light fixtures hung a large cardboard globe, and descending from the middle was a strange shape, the symbol of the conference—I spent about twenty minutes debating whether it was a puzzle piece or a person that looked like a puzzle piece. Alas, I could wonder no more, as suddenly Temple Grandin was called onto the stage, each of the boring people filtering back to their front-row seats.

I’ve never seen Grandin speak, though I have read several of her books and have watched some of her presentations on YouTube. Calling her energetic would be an understatement. Her talk about autism spectrum disorders had the fervency of a televangelist, minus the damnation and tithing stuff, if you can imagine that. For those not familiar with her work, Grandin was born in 1947 and sported all the symptoms of full-blown, classic autism. Today, she’s a professor at Colorado State and has designed half of the facilities for livestock that exist in the U.S. And, according to her blurb in the NATTAP program, she’s arguably the most famous autistic person in the world. HBO is currently filming a movie about her early life, with Claire Danes playing the role of Grandin. As Grandin discussed her visit to the Hollywood set during the keynote talk, she mentioned how she cared less for meeting Claire Danes than she did for playing with all the neat electronic toys on the set.

What I really enjoyed about Grandin’s talk was her perspective on ASD—a focus on strengths rather than deficits. Sometimes I read autism-related articles or watch documentaries on Asperger’s and walk away thinking “woe is me,” wondering why I even bother to tie my shoes in the morning or trudge through the existential quandary that is life. Grandin described three thinking types that generally typify persons with ASD:

1. Visual thinkers (poor at Algebra)
2. Music and math thinkers (love patterns)
3. Verbal fact thinkers (poor at drawing, tend to be the aspies who love History, fact-finding, and/or language-based subjects)

Grandin continually emphasized that “eccentric” is OK, that not everyone should be “plain vanilla,” that autism is variable, that no one on the spectrum is of a cookie-cutter mold. The only way to help insure success of those on the spectrum, she argued, is to drill social skills into them at a very early age and in very specific ways.

Grandin claimed that there is a big difference between old and new aspies, that aspies of previous generations have tended to be more successful in jobs and relationships because rules and manners were more structured in the 50s and 60s. She uses herself as an example—her success, she maintained, dealt largely with her mother being very specific about what qualifies as rudeness. “Neurotypicals,” she lamented, “are too vague today.”

Grandin concluded a bit prematurely, mostly because the boring people at the beginning started late. She suggested that practitioners learn to better identify the strengths of those on the spectrum and capitalize on those strengths for employment. She also stressed that many people with ASD “are what they do.” After her talk, she sat at a table in the exhibition hall and signed books. In true miserly fashion, I brought my tattered, heavily used copy of Thinking in Pictures, an ex-library book that I splurged three dollars for on half.com. Grandin signed it and made a comment about the old library stamps. I told her that I was a poor grad student surviving on Ramen Noodles and my professors’ mercy, and she seemed to understand.

Photographic evidence: Grandin’s signature

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