aspie rhetor

I’m a little bit late in posting this (PhD life has caught up to me, it seems), but the issue is still ongoing: Lindt Chocolates has partnered with Autism Speaks for a fundraising campaign. Lindt plans to donate funds from the sales of its gold chocolate bunnies and bunny ears to Autism Speaks.

One of the things I love about the newly vamped change.org is its actions feature: there’s a growing community of neurodiversity advocates there, mostly due to the blogging efforts of Kristina Chew and Dora Raymaker, and the Autistic Self-Advocacy Network has been able to create form letters/petitions via the change.org interface. In short, it is now incredibly easy to send protest letters to various organizations and companies. ASAN provides you with a stock letter for the controversy du jour, which you can edit, and ASAN sends the letter as an email to the desired parties. It’s pretty cool. You can view the Lindt action here.

Back to Lindt…

Apparently, their support of of Autism Speaks has been going on for a while now. And, I’ve just learned that Toys R Us has additionally been partnering with Autism Speaks. Starbucks began printing blurbs about Autism Speaks on its coffee cups two years ago, and Hulu receives some of its sponsorship from Autism Speaks.The list of Autism Speaks’ BFFs seems never-ending.

Autism Speaks has a tremendous amount of corporate and media support. It’s little wonder that the autism controversy isn’t even rendered as a controversy in popular discourse. When I try to explain the concept of neurodiversity, for instance, to someone new to the autism fold, a typical remark resembles the following: “That’s stupid. Why wouldn’t someone want a cure?”

Autism Speaks’ toehold on autism discourse in popular media de-de-de-controversializes autism, de-de-de-ideologizes autism, re-re-re-pathologizes autism, and re-re-re-silences autistics. (And yes, I tripled the prefixes on purpose — something, anything, to effectively represent my emphatic tone here.)

Additionally, because of cure-minded groups like Autism Speaks (they aren’t the only one with media clout), neurodiversity comes across as some sort of fringe group of fame-seekers. Last year’s New York Magazine feature on the movement sported the following byline: “A new wave of activists wants to celebrate atypical brain function as a positive identity, not a disability. Opponents call them dangerously deluded [emphasis mine].” Moreover, a fairly recent Good Morning America segment on neurodiversity — which featured wonderful spots with Ari Ne’eman and Kristina Chew — ended with an incredulous Diane Sawyer showcasing both her doubt and her journalistic ethos.

I think the frustrating thing here is that, to the public masses, neurodiversity seems so new, so “out there,” so contained and so rare. Neurodiverse advocates are either painted as too disabled or too autistic to understand how badly they’re “suffering,” or as too high-functioning to know what “real” autism is. It’s a frustrating catch-22, to cite the novel that my book club recently finished.

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Last year, I took a seminar in disability studies with Brenda Brueggemann and created a webtext for my final project — a webtext on autism and embodied authorship. This past summer, while attending the Digital Media and Composition Institute (DMAC), I did a complete overhaul on my webtext and received lots of good advice from Cindy Selfe and Cheryl Ball. This webtext has been published in the Spring 2009 issue of Computers and Composition Online, an online, refereed scholarly journal. I’m quite excited, but also quite nervous. In a way, this functions as an Asperger’s sort of “coming out.”

For those interested, my webtext is available here:
http://www.bgsu.edu/cconline/dmac/index.html

I should also note that there are several places in this webtext where I attempt to be sardonic, or sarcastic even. Part of this is me playing with representations of the spectrum. My own perspective about autism is a very neurodiverse one, so if something in this webtext seems contrary to neurodiversity, or seems inflammatory, then it’s probably me attempting to be sarcastic. I’m hoping the points where I’m not being literal are clear in their intent, especially since so many people reviewed this and helped me with the revisions. 

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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.

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I have not yet received a response from Gordon Gee about the letter I sent to him last month. I have, however, received lots of other responses — responses that run the gamut. I forwarded my letter to the central Ohio chapter of the Autistic Self-Advocacy Network, which then circulated the main listserv, which was then posted on the GRASP listserv, which was then picked up by a couple of other autism-related blogs. And, this being finals week, I haven’t yet had much opportunity to respond to the response.

One accusation that has come my way is that I’m “trying to speak for all autistics.” I’m not; this was never my intent; and I don’t think that my letter reflects this intent. My aim was simply to introduce the president of my university to the (often invisible) debate occurring in autism/autistic discourse. Moreover, I stand by the claim that many/most autistics (LFA and HFA) have issues with being “cured.”

Please note, however, that the neurodiverse position which I’ve adopted does not berate medical treatment or education or access, etc. These things aren’t cures. I even stated such in my letter:

“Although Autism Speaks admirably aims to help families attain necessary medical services, their cure-and-epidemic rhetoric frequently denies autistic individuals a most fundamental right—that of their personhood.”

Moreover, I also advocated the following:

“Only when we acknowledge that the conversation on autism must, of necessity, include autistics can we begin to help all those affected by autism to lead productive and fulfilling lives.”

I fail to see how these points take attention/resources away from those who are low-functioning.

Obviously, as a community, we need to further investigate what we mean by “cure,” what we mean by “treatment,” what we mean by “intervention.” I think we also need to question the assumptions we make about autistics as related to their postulated “functioning” levels. One common comment I’ve received from parents is that their autistic child will never do what I, as an HFA person, am doing. And, to be honest, this outlook saddens me, because 1) it assumes a whole lot about my personal medical and educational histories, and 2) it focuses on the child’s deficits, defining that child wholly in terms of lack. Sure, we might postulate that many autistic children will never attend grad school (or get married, or live alone, or say “I love you”), will never be “successful.” And, right there, I think we need to also question the nature of the word “success,” because it assumes that success can only be accomplished according to traditional able-bodied narratives or through the magic pill of cure. It also delegitimizes non-traditional/autistic successes, I think: what do we, as a community, define as success, value as success?

I hope this makes sense. I completely recognize that I am not other autistics, as much as I recognize that other autistics aren’t me. But isn’t this the whole point? The spectrum is a spectrum because so much is encapsulated under it, and no two people with ASD are alike. Even Autism Speaks can agree with this, I’d say.

I’d also like to reiterate something I wrote in an earlier blog post: as proud as I am to be autistic, Asperger’s isn’t all sunshine and butterflies. For instance, I have some real sensory problems, painful ones. Yet, as much as I want to be able to enjoy certain foods or tolerate normal lighting or sounds, I don’t want to turn off my sensory experiences. This is how I know the world, experience the world, make sense of the world. My sensory experiences are, in part, related to some of my behaviors that others consider “odd” or “off-putting” or “autistic” (e.g., stimming, lack of eye-contact, perseveration). In essence, while learning how to better manage my sensory experiences would be wonderful, eradicating them would be horrible. Removing them would remove me.

Obviously, the cure issue is more complex than I presented it in the above paragraph. But it’s a good start to explaining why cure is so sticky, so tricky, so icky. I think another valid point has to do with resources: autistic children (LFA children especially) and their families are often placed on never-ending waiting lists for the services they need, are denied insurance coverage, are denied equitable educational access, etc. And we have all this supposed money going to cure research, but only a fraction going to the supports needed now.

Rhetorically, cure is a question of kairos, of timeliness and urgency. We are made to feel, by organizations such as Autism Speaks, that cure will make families and children “whole” again, that cure is of the essence. Instead of valuing who these autistic people are and what they need, we value what and who they might have been otherwise. We fantasize, romanticize. And rather than help autistic children and adults learn to be themselves as they learn to navigate this complex, social, NT world, we want to make them over into something other and alien and so totally not them.

I’m sure I’ll add more to this later. But I felt the need to clarify my position in light of recent comments. Hopefully I’ve been “successful” in this venture.

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