Autism SpeaksU Initiative

Posted on January 25th, 2009 in blog rants by Aspie Rhetor

Ugh.

Autism Speaks has launched a series of college/university chapters, a program that started at the beginning of the 2008-2009 school year. My university, Ohio State, is currently in the process of forming its own chapter. Over the past month, three people have tried to “recruit” me for it. My unabashed disgust for Autism Speaks notwithstanding, I think I’ve been tactful and rhetorically “appropriate” in my conversations with these people — conversations in which I’ve tried to communicate why Autism Speaks is a harmful organization. Unfortunately, my appeals have not been persuasive thus far.

In December, an NT grad student in the aspie group I belong to forwarded me a notice from the Autism Speaks faculty advisor. My grad student friend knows of my disdain for Autism Speaks and suggested I write the faculty advisor, or possibly consider joining the group to provide balance. I opted for letter-writing, of course, because in no way do I want to be affiliated with Autism Speaks. In my letter, I explained neurodiversity and Autism Speaks’ problematic foci on cure and prevention. The faculty advisor, in response, said that although she empathized with my position, the group would maintain the vision of Autism Speaks.

In the faculty advisor’s “defense,” I’m fairly certain that she was well-meaning in her statement and that she has nothing but so-called “good intentions” concerning her involvement with Autism Speaks. I think that many people involved with this organization, as harmfully misdirected as it is, have good intentions despite their woeful ignorance. However, the moment I saw the word empathize in her letter, something in me snapped. Obviously, she was not empathizing with me, and her remark came across as quite patronizing.

I’ve reached the point in life — in my growth as a person who has accepted and embraced being autistic — where the “good intentions” excuse just doesn’t cut it for me any more. If a bunch of autistic people are telling an organization that their group’s vision is hurtful, harmful, and unrepresentative, and they just keep chugging along obliviously, how does that make them well-intentioned? Or empathetic for that manner?

Empathy is such a charged, loaded word in autism discourse. By popular autism definitions, I am pathologically (and negatively) unempathetic. The inverse of this statement, if we herald the lovely NT/autistic binary that so many people love to herald, is that NTs are normatively (and positively) empathetic. Hence, the assumption is as follows: I can’t understand their minds or motives, but they can clearly understand mine, and, moreover, they’re so in tune with me that they understand my mind and motives better than I do. Empathy becomes the ultimate bodily displacement: the dominant discourse-wielders fit better in my shoes than I do.

In my graduate class on digital literacies, we’ve been exploring various research methods, one of which is discourse analysis. Our professor assigned us a book chapter by Thomas Huckin, “Critical Discourse Analysis and the Discourse of Condescension.” I’ve found myself employing his method of analysis on most everything I’ve read for the past five days — especially conversations concerning Autism Speaks’ role at my university. In his piece, Huckin shares correspondence between himself and a Utah state senator. Huckin wrote a letter in protest of the legislature’s plan to cut the higher education budget in order to fund highway construction (164). In response, the state senator used a sickeningly and politely patronizing tone, a tone Huckin defines as being discursively condescending:

“…the discourse of condescension has three main characteristics: First, it contains nothing overtly critical or negative, and often proffers insincere praise; second, it assumes a difference in status and worth between speaker and listener (cf. Goffman on ‘alignment’); and third, this assumed difference is disputed by the listener.” (167)

In the spirit of Huckin, I’d claim that the response I received — as well as Autism Speaks’ general behavior as an organization — is mired within a discourse of condescension. For example, in response to my embrace of a social approach toward disability, as well as the list of problems associated with Autism Speaks’ “vision,” the advisor wrote:

Thank you for your kindly worded letter.

[#1: polite praise of my original letter]

I am very familiar with this stance and I completely empathize with your perspective. However, this group will maintain the same standards and vision as that of Autism Speaks.

[#2: The power differentials are firmly rooted in an appeal to empathy. As described above, within the context of autism discourse, claims toward empathy invoke a rhetorical power play. She knows that, as an Asperger's autistic, I am supposedly "mindblind," and that, as a neurotypical, she supposedly has mental ESP. By invoking empathy, she dons discursive condescension and places her perspective regarding autism on a pedestal far above mine: she supposedly has the cognitive capacity to understand what it's like to be an autistic person who is continually told that she's an empty shell who's unworthy of existence, and, because she supposedly understands what it's like to be thought of as a mindblind, burdensome human being, she can segue into the "however" clause and uphold Autism Speaks' combative ideology.]

The letter goes on from here: she continued by saying that Autism Speaks was “moved” by the October 2008 campus walk, and she also expressed her desire for greater community involvement and “working together” with other campus autism groups. However, #3 arises in that I, as the recipient of this letter, dispute our postulated difference in “worth” as “functioning” humans — she asserts a hierarchy of empathetic worthiness; I don’t. In this letter, the writer employs rhetorical tools common to (neuro)typical autism discourse, and she employs those tools to make light of her opposition’s opinions and experiences.

Autism on the beach

Posted on January 20th, 2009 in blog rants by Aspie Rhetor

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

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

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

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

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

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.

New look

Posted on January 12th, 2009 in blog rants by Aspie Rhetor

I’ve upgraded from Wordpress 2.2 to 2.7, a much needed update. Consequently, I’ve several new blog toys to play with, such as new themes and widgets!

Over the next few days, the layout might change around a bit as I get the newness of 2.7 out of my system. I generally don’t consider myself the sort of person who likes to sport new blog layouts every day, but I’m interested in what my new upgrade can do.

Just a warning.  :)

Favorite search keyphrases of 2008

Posted on January 4th, 2009 in blog rants by Aspie Rhetor

Using awstats, I keep tabs on how people (and spambots) end up at my blog — what sites have referred them, how often they visit and how long they stay at my blog, and, most interestingly, what search terms and phrases have led them here.

So, compiled below, I’ve addressed what I feel are the most interesting and perhaps ridiculous phrases that have attracted web visitors to my aspie rhetor blog. Hopefully, in addressing these keywords, the web searches of my mythical visitors will not have been in vain.

1. aspergers and the inability to realize the need to vomit

I keep reading over this one. When I paste the phrase into Google, my site comes up as #8. (Should I feel flattered?) A lot of things make me want to vomit, and I usually try to reduce needing to vomit by avoiding the things that will induce it. Of course, I am but one aspie, and perhaps other aspies don’t realize that they need to (or want to?) vomit at certain junctures.

My only guess as to this particular in-the-dark-about-vomithood sensation might revolve around aspie perseveration. When I was younger, especially, I’d get so engrossed in something (e.g., reading maps, playing with dolls, or listening to ELO) that I’d fail to realize that I needed to take heed of necessary bodily functions, such as eating or using the bathroom. But never with vomiting.

2. why do presbyterians hate pentecostals

Presbyterians hate pentecostals?

Actually, my experience has been the other way around — pentecostals hating Presbyterians (or, more realistically, pentecostals hating anyone who isn’t pentecostal). I grew up in a pentecostal family and ended up in a Presbyterian college for my last two years as an undergraduate student. Though the presbies I came in contact with did not theologically coalesce with those of a pentecostal persuasion, they always seemed fairly cordial as compared to the pentecostal people. (Of course, perhaps presbies are just more restrained in their hatred. After all, the pentecostals are rhetorically glossolalic and tend to be more charismatic.)

3. the baddest evilest vilest web site ever

I hope that this site didn’t exemplify what the searcher was hoping for…

4. elo and autism

Someone who wasn’t me actually searched for this?! (Or maybe it was me who searched for this.)

When my parents first heard about Asperger’s way back when, the first DSM criterion they pegged onto me involved that of the  intense, unrelenting interest. ELO, for me, is a very serious thing. The first ELO album I owned was 1975’s Face the Music, which I had on cassette. To the chagrin of my sister, who happened to share a room with me at the time, I’d play the tape over and over and over. Eventually, my parents had to separate us into different rooms as our personalities were so disparate: I needed to control every aspect of the environment, and any time she so much as moved a sock, I’d flip. Moreover, she could no longer tolerate the sounds of “Evil Woman” or “Fire on High.” (My father still jokingly refers to us as Felix and Oscar.)

5. aspergers sufferers

I hate this term. I don’t “suffer” from Asperger’s. I have a rather large problem with the autism spectrum being defined wholly in terms of suffering and deficit, hence the letter I wrote to the president of my university. This idea of ASD being equated with suffering seems a largely neurotypical construct to me, as if anyone who isn’t “normal” must somehow be suffering, and the problem of the suffering lies entirely within the so-called sufferer.

Many say that those with ASD have “problems” socializing –  but I would posit that, while spectrumites have difficulty socializing with NTs, so too do NTs have difficulty socializing with spectrumites. I’ve met very few people who “get” me, and I’ve likewise met very few people that I understand socially. Communicating with NTs, for me, sort of feels like cross-cultural communication: there has to be some give and take from both sides, because when I’m the only one giving or compromising in the way that I communicate, I’m effectively draining and killing myself, my personality. My autistic ways of communicating aren’t marks of my suffering self. My autistic ways of communicating are constructed as those of a “sufferer” because they deviate from a one-size-fits-all, neurologically typical society.

I have some painful sensory experiences sometimes — but even here, I hesitate to use the term “suffering,” and, if I ever use it, I put it in scare-quotes, because “suffering” is so inadequate as a term, so emotionally and neurotypically loaded as a term. Who’s to say that NTs don’t “suffer” from their sensory experiences? Though spectrumites may be “missing out” on how NTs perceive their surroundings, NTs are “missing out” on how spectrumites perceive theirs. This construct of suffering depends upon who controls the dominant discourse surrounding neurology and (dis)ability.