My silence is, in fact, a compliment. It means that I am being my natural self. It means that I am comfortable around you, that I trust you enough to engage my way of knowing, my way of speaking and interacting.

When I dilute my silences with words — your words, the out-of-the-mouth and off-the-cuff kind — I often do so out of fear. Fear that my rhetorical commonplaces — the commonplaces that lie on my hands, sprint in my eyes, or sit nestled in empty sounds — will bring you shame. Fear that my ways of communicating will be branded as pathology, as aberrant, as not being communication at all. Fear that I will lose my job. Fear that I will lose your friendship, guidance, or interest in me. Fear that I’ll be institutionalized. Fear that I will be infantilized. Fear that I’ll be seen as less than human.

This isn’t to say that my use of your language is always a product of fear. There are times when I genuinely want to use it, understand it, and learn about and from it. I understand that speaking is how you prefer to communicate. I understand that speaking is how you best learn and interact. I understand that you take great joy in speaking and listening to others speak. And I do, I really do want to share in that joy.

But the burden can’t always rest on me. I have a language too, one that I take joy in, one that I want to share. And when you deny me that — when you identify my silence as a personality flaw, a detriment, a symptom, a form of selfishness, a matter in need of behavioral therapy or “scripting” lessons — when you do these things, you hurt me. You hurt me deeply. You deny me that which I need in order to find my way through this confusing, oppressive, neurotypical world.

My silence isn’t your silence. My silence is rich and meaningful. My silence is reflection, meditation, and processing. My silence is trust and comfort. My silence is a sensory carnival. My silence is brimming with the things and people around me — and only in that silence can I really know them, appreciate them, “speak” to them, and learn from them.

Speaking is an unnatural process for me. When socializing through speech, I will almost always be awkward, and I am OK with that awkwardness. In fact, I am learning to embrace that awkwardness, learning to reclaim and redefine that awkwardness. I am sorry you’re not OK with that, sorry that you feel I need to practice, or take anti-psychotics, or frequent the university hospital’s psych ward. I’m sorry that you won’t appreciate me for who I am and how I operate in the world. I’m sorry that I can no longer consider you an ally, confidante, or friend.

I'm not a checkbox in some symptom cluster. I'm a freaking human being.

I hear this a lot lately, primarily from undergraduate students who find autistic self-advocacy reprehensible and/or incomprehensible. In fact, at our protest this fall, someone actually came up to us and said, “If you can self-advocate, then you’re not autistic.” Way to disempower much?

Here is the wonderfully circular logic that has come to constitute much of my advocacy life lately:

Me: What you’re doing is hurtful.
Them: But we just want to help people like you.
Me: You’re not helping. Please stop.
Them: But we just want to help people like you.
Me: But you’re not helping.
Them: BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!

I’ve spent the past few months trying to devise smart-ass responses to this statement.

• But I just want to torture people like you.
• Oh! Yes! Of course! I’m sorry! I forgot that this was all about you!
• *cuing echolalia* BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!

And herein lies the frustration: Advocacy isn’t advocacy if it’s merely a synonym for self-interest. If the people you’re claiming to serve are objecting to your help, are telling you that you’re being hurtful… shouldn’t that give you pause?

I have no reason to be grateful for your hurtfulness. I shouldn’t have to grovel because you’re wearing a t-shirt with a puzzle piece on it, or because you’re raising funds to prevent people like me from existing. I shouldn’t have to look you in the eye, tear up, and utter an inflected “thanks” because it makes you feel good about yourself.

My lack of gratefulness isn’t an ASD symptom. My lack of gratefulness doesn’t mean that I’m not disabled. My lack of gratefulness isn’t impoliteness, smugness, self-centeredness, theory of mindlessness, or some other bad-sounding, mega-autism, amorphous blob thing. I shouldn’t have to wake up feeling grateful every morning, as though gratefulness is some sort of requisite pre-condition for being developmentally disabled.

Would you feel grateful for people who want to “eradicate” people like you?

Would you feel grateful for people who refer to you and your loved ones as an “epidemic,” as a “global public health crisis,” as a “disease” more prevalent than “pediatric AIDS, cancer, and diabetes combined”? Would you feel grateful for people who make a career out of representing you and others like you as creatures of pity, contagion, and fear?

Would you feel grateful for people who ask you, in front of large crowds, how old you were when you were toilet-trained? How you manage to have sex? How you wake up every morning knowing that you are you?

Would you feel grateful for people who call your parents “heroes” because they didn’t put you up for adoption?

Would you feel grateful for people who start up college groups that patronize you? Groups that claim to be your “voice,” yet never even consult you? Groups that devise activities meant “for” you or your “benefit,” yet in their very design exclude you and people like you? Make-up parties, gala balls, sorority cookouts, sensory unfriendly films, massive and crowded walks — boisterous, clamorous, noisy events, events advertised to help you, all the while raising funds to get rid of you?

Would you feel grateful for people who claim you don’t exist, merely because you’re over 21? Because you’re a woman? Because you claim to have a sexual orientation?

Would you feel grateful for people who disprove of, and ardently protest, your decision to have children? Would you feel grateful for people who work to revise custody laws so that people like you can’t single-parent or adopt?

Would you feel grateful for people who call you mysterious, puzzling, special, and heroic — because you’re you? (And, of course, being you isn’t something they’d wish on anyone.)

Would you feel grateful for people who regularly describe your body language, ways of gesturing, and ways of interacting as disturbing, inappropriate, deviant, clinical, and abnormal? Would you feel grateful for people who tell you that the way you think, act, know, and sense are all wrong?

Would you feel grateful for people who segregate you from your classmates, people who claim that who you are as a person will have detrimental effects on your peers’ intellectual development?

Would you feel grateful for people who tell you that you’re an “exception” and therefore nothing you say even matters? Would you feel grateful for people who question your diagnosis simply because you disagree with them?

Would you — should you — feel grateful for people who constantly tell you how ungrateful you are?

Would you feel grateful for these people? Seriously? Truly? Because, if that’s the case, perhaps I can teach you how to flex your ungrateful mind muscles.

**

In other news: I’m back, after a small hiatus. Academic life has been a bit hectic (understatement) these past few months.

Me holding a sign: "People not puzzles!"

I managed to maintain my composure throughout the protest, regardless of the insults thrown our way, regardless of the noise and clamor and overt hostility of the event. But then I came home and started sifting through an hour’s worth of video footage — and I broke down. Sobbing, shaking, rocking. It was so intense, all so intense.

I don’t want the next generation of autistic people to face this crap. I want it to be different for them. I want them to take pride in who they are as autistic people, and I want those who love them to take pride in who they are as autistic people. I want autistic ways of thinking, being, and knowing to be valued and validated. I want autistic people to have a say in the decisions that concern them.

And most importantly, I want there to be autistic people.

Video recaps of the protest:

Our protest attracted media attention from 10TV, ABC 6, and independent journalists. Even today — Wednesday, four days later — random strangers notice the Autistic Pride button on my backpack and exclaim, “Hey! I saw you on the news! You talked about where the money goes for that autism walk.” These things help — knowing that our four-hour ordeal has had some tangible effect, has furthered our cause.

We were featured on the ABC 6 news, and I provided a brief soundbite:

We also created our own video of the protest. Nick J. was our cameraman extraordinaire, and I did the editing. The video is still painful for me to watch — especially toward the end, while we’re chanting Autism Speaks needs to listen, and, in an alarming touch of irony, the walkers drown us out by collectively screaming O-H-I-O!

As I replay the clip, I have to cover my ears, tuck my chin down into my chest, breathe heavy. It is hard to watch, but it is a poignant example of Autism Speaks’ attempts to silence us, to refuse to listen to us, to never let autistics speak.

This post wouldn’t be complete without a thank you. Thank you. An incredible number of people, local and distant, helped us through this protest. And despite the protest’s emotional toll, perhaps even because of the protest’s emotional toll, I’m glad we did it. And I know that we need to continue doing it. Change is long and hard. But it’s happening.

Protesters face the crowd of walkers

]]> http://aspierhetor.com/2010/10/13/columbus-protest-against-autism-speaks/feed/ 10 http://aspierhetor.com/2008/10/26/self-indulgent-narratives/?utm_source=rss&utm_medium=rss&utm_campaign=self-indulgent-narratives http://aspierhetor.com/2008/10/26/self-indulgent-narratives/#comments Mon, 27 Oct 2008 03:59:47 +0000 Melanie http://aspierhetor.com/?p=61 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 autie and aspie 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.)

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