blog rants – Page 14

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]

Empathize with this

So, one of the popular medical theories surrounding the “puzzle” of autism spectrum disorders involves theory of mind — or lack thereof. Possessing a theory of mind involves the illusion that one can understand what another human being is thinking or feeling, a neurotypical ESP of sorts. Theory of mind largely concerns empathy, the ability to place oneself in another’s shoes, so to speak. Many autism specialists, among them Simon Baron-Cohen, argue that people on the autism spectrum either lack a theory of mind or have an impaired theory of mind. Autistics supposedly cannot empathize with or predict the NT world, and they thus have a whole bunch of communication issues.

Of course, I think that this theory has done quite some damage. Autistics have been represented as characteristically unempathetic individuals. And this “unempathetic” characterization has often been conflated with emotionlessness, conceitedness, apathy, and plain old malevolent and murderous evil. While I don’t deny that I’m hardly able to place myself in the shoes of others, I do posit that no one can really, truly place themselves in someone else’s shoes, unless we’re talking about literal shoes with similar foot sizes. In any event, I think there’s a limit and a danger to this thing we call empathy, because empathy isn’t wholly concrete and logical. Empathy, by definition, involves assumption and guesswork.

Empathy (or imagined understanding) can only be remotely successful when engaged between people with similar backgrounds, people who occupy similar social stations. Thus, in the same manner that autistics have difficulty empathizing with NTs, so too do NTs have difficulty empathizing with autistics. (James Wilson, in Weather Reports from the Autism Front, makes this very point about empathy. He can’t pretend to understand his autistic son’s experiences, his ways of knowing and being. Neurotypicals are just as empathetically impaired as autistics.)

[Jenny McCarthy: “expert” on autism, empathy, and strapless bras]

I like Dennis Lynch’s complication of empathy in “Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West.” In his article, Lynch suggests that true empathy is never possible because such an act results in “bodily displacement,” in colonization or assimilation. So, in order for an NT to step into an autistic’s shoes, the autistic has to physically remove her feet from her shoes. As a result, when an NT claims to empathize with autistic experience, the NT is really imagining what it would be like for an NT to be an autistic — not what it is like for an autistic to be an autistic. The same could be said about an autistic person attempting to empathize with an NT: bodily displacement results.

Of course, because neurotypicality is the dominant neuro-discourse, NT ways of empathizing are considered more acceptable than autistic ways of empathizing. Warning of empathy’s co-optive dangers, Lynch writes,

Empathy in this way may seem like a harmless practice as one imagines how another may be feeling about an event, circumstance, or issue, but, as these critics argue, whatever’s empathy’s expressed aims may be, asking people to empathize usually locates the obstacles to empathy—to listening and to being heard—solely in the minds and habits of individual participants, and so obscures or ignores the political and economic and bodily dimensions of social struggles. (6)

This isn’t to say that empathy is inherently bad or wrong. However, empathy has its limits and dangers — severe limits and dangers. In assuming we can experience the fullness of another person’s “lifeworld,” we erase, or make transparent, very real differences (Lynch 9).

PETA’s new ad campaign

PETA (People for the Ethical Treatment for Animals) launched a new ad campaign three weeks ago in their fight against cow milk:

I’m not entirely sure where to start here, PETA. First of all, though I realize that ads meant for billboards and quick web visits are meant to be image-heavy and textually sparse, you’ve provided a whole lot of misinformation in your few measly independent clauses. In asking the lovely “Got autism?” question, are you trying to be sardonic and rhetorical, or are you in fact addressing the 20 million autistics who currently occupy planet earth? Because, sure, I’ve got autism, and no, I had no idea that studies linked cow’s milk to autism. But perhaps your “study” is actually synonymous with what I would call “total crap.” Just a thought. Although, since I’m autistic, it might be that my inner thesaurus is operating on some totally whacked out, casein-induced frenzy. Or how about not?

Anecdotally, some autistics note amelioration of their “symptoms” — e.g., isolation, meltdowns, sensory overload — when they’ve removed dairy and wheat from their diet. (Of course, PETA, you would never crusade against wheat.) However, this “improvement” is anecdotal and not scientific. It could be that some autistics experience food intolerances or digestive problems. But, see, there’s a big problem with this “link” word, PETA, because any protective parent who reads this will assume that milk has been shown to have a causative impact on autism, which it simply doesn’t. There are plenty of vegan autistics who are just as autistic as ever. I suppose, on the positive side, if people were to assume that milk does cause autism, then maybe they’d get their kids vaccinated and stop with the mercury-poisoning mantras.

And then there’s that frowny face, PETA. The Cheerios are a nice touch, really. I’m glad you didn’t use Fruit Loops, because then that might play into the assumption that only autistic children are worth giving a crap about. But the frown — oh, the frown. I may have difficulty with nonverbals and facial expressions, but I think I’m accurate in concluding that Mr. Cheerio Face is quite weepy and pathetic. Basically, PETA, you and Mr. Cheerio Face are making the assumption that autism is a sad, sad thing. And, quite honestly, it’s not. Autism is a way of life, much like veganism, minus the liking of food-with-freaky-textures thing.

On another page, you write:

Autism is a brain disorder that causes sufferers to have extreme difficulty communicating and relating to others. It is often marked by anti-social behavior like screaming and obsessive repetition of actions, which takes an enormous emotional toll on sufferers and their families. PETA has created a billboard to alert the public to the connection between this devastating disease and dairy-product consumption. …

Anyone who wants to alleviate or avoid the devastating effects of autism should give cow’s milk the boot and switch to healthy vegan alternatives instead.

Again, PETA, you’ve mixed up some pretty important facts. Autism isn’t a disease. It isn’t something that you wake up with one morning; it isn’t something that you catch on the subway; it isn’t something that goes away. Autism is a neurological condition, a condition that affects how one’s brain is wired. Autistic brains and autistic existence aren’t devastatingly anything, unless you’re claiming that they’re devastatingly awesome.

You ask, “Got autism?” I say, “Yes, I do.” Somehow, though, I don’t think you were ever asking me anything in the first place.