Sunday, October 26, 2008

Being Part of the Disabled Community Versus Being a Member of a Minority Group (Part III)

(Part I)
(Part II)

The differences separating me, as someone on the high functioning end of the autism spectrum, from those on the lower end of the spectrum (and their parents and advocates) was starkly illustrated to me at a recent Autism Speaks Walk in Columbus. I attended the event as a member of Aspirations, an autism support group here at Ohio State. I assumed that the event would be a show of unity and support for autistics across the spectrum. The event was held at the Schottenstein Center, the basketball arena for the Buckeyes, and over nine thousand people attended. I loved the whole atmosphere and being there with my friends from Aspirations. My joy at being at this event lasted up until the moment the first speaker started talking and went down from there. I had to sit in the stands and listen as a parade of people got up and spoke about autism, how it is an “epidemic,” and a “disease” that needed to be “cured.” Sitting in the crowd and listening to these speeches, I felt like I had been used and taken advantage of. This was not what I came for. Imagine a black person going to a civil rights rally only to find himself being called an N-word and hearing that his blackness was a "disease" that needed to be cured.

Believe me, I recognize the incredible difficulties that parents of low functioning autistic children must go through. For that matter, I know that I was not an easy child for my parents to raise. I am sure my parents would have benefited from having someone to explain what was going on with me and to offer support. And parents of autistic children need all the help and support they can get. But that is the point; help and support is not a cure. Even in terms of support, though, there are differences. What my parents needed was not a medical professional to make me “functional” or to act like a “normal” person. Their needs were not all that different from that of parents of gay children. They would have benefited from having a professional tell them that yes I was “different,” that this was not a bad thing, that it was not their “fault” that I was who I was and that there was nothing they could do to “fix” me. All they could do was accept me for who I was, to try to understand my alternative way of life and be the advocates and the support I needed. (All in all, I think my parents did a pretty good job without any professional help.)

As someone with Asperger syndrome, I do not see myself as disabled in any fashion. On the contrary, I thank God every day for giving me the gift of Asperger syndrome. I look at other people and I wonder how they live such dull neurotypical lives. My life may be lonely much of the time but it is certainly interesting. If you offered me a "cure" for my Asperger syndrome I would laugh at you and throw it in your face. More than that, though, the very notion that I would need to be "cured" is an insult; it implies that my way of life is somehow less than other's peoples. This is no different from those who would suggest that homosexuals should be "cured."

Ultimately, there were different interests at stake at this Autism Speaks Walk. It was organized primarily by parents of low functioning autistic children. For them, autism is a disability that needs to be cured. For me, and others with Asperger syndrome, autism is an alternative way of life. These interests directly conflict with each other; the mere existence and public visibility of each side harms the other. Having low functioning autistics in play is detrimental to me because it opens up the charge that I, as an autistic, am disabled as well. Whether it is fair or not, I am tainted by the mere association. On the other hand, while I may be useful as an advocate for autism, I present a tremendous inconvenience for those dealing with low functioning autism. I take away from the narrative of autism as a disability. No one is going to come away from meeting me overwhelmed with pity at the horrible state of those living with autism. Furthermore, the fact that I am as functional as I am raises an implicit challenge to those less fortunate than me. If I could succeed what does it say about those who do not? This may not be fair but it taints them with failure.

I have Asperger syndrome and I am proud of it. My way of life is equally legitimate to that of other people. I will continue to fight for myself and for others with Asperger syndrome so that we should be able to have our stake in our multicultural society.


Miss S. said...

It is unfortunate that your primary perspective on being used as an agent for advocacy comes from you being on the autism spectrum and not from being a Jew (because being a "Jew" is so mainstream nowdays, they hardly need advocacy anymore {{sarcasm}}). How can Jews push more so to have kosher alternatives available in college meal plans? How can Jews feel comfortable enough asking companies to accomodate their time off for holidays as women feel when reporting corporate sexual harrassment? Can there be any viable advocate for these situations when there are countless Jews who could care less about these things. Being Jewish is markedly different from being autistic; but in an analogy, if non-religious Jews were to represent those with Asperger's Syndrome, and frum Jews were to represent those with low-functioning autism, the danger of autism being trivialized would be very real.

Not that I agree with what transpired. You had every right to be exasperated, insulted, or duped. Your post reminded me of the time my sister came home fuming because her school approached her and some of her friends, all of whom were Black, for a special retreat for minority students from the Mon Valley. They were surprised to see far more White students at the retreat, and later found out that it was for "low-income" students...not minorities specifically (being low-income in the Mon Valley is definitely not "minority" status!).

Izgad said...

You are right.
I chose not to use the example of being Jewish because Jews, at least in this country, are not in the spotlight in terms of tolerance. There are no major Jewish rights issues being debated in the public sphere. I specifically used the examples of the black and gay communities because these are groups that are in the public spotlight in terms of tolerance but, in least within the context of the college campus, are very powerful. Yes there are people out there who are likely to clash with blacks and gays (I do not deny that racism and homophobia are real issues) but these groups are also well protected by university diversity policies even to the point that they can even turn the tables on their opponents. (or anyone they think is not an enthusiastic enough supporter of their agenda)

Ohio State has been very good to me in terms of Judaism. Hillel and Chabad provide Kosher meals. The university has also been very helpful in terms of holidays particularly this year with yom tov taking up seven weekdays in just the first few weeks of school.

Anonymous said...

Your post reminds me of the divide between the Deaf community and the community with cochlear implants.

Izgad said...

The deaf community is a model for me in that they are a group that has managed to move themselves away from being a disability to being a minority group. Being deaf is not a disability it is a culture. Sign language is a language taught alongside French and Spanish. There are even plays and poetry in sign language.