Friday night, my family and I attended the kick-off event for the annual Phoenix Zoowalk, a fundraiser that supports the Autism/Asperger's Research Program at ASU. Dr. James Adams, who heads the program, gave the families and professionals in attendance a welcome address, after which students from my daughter's autistic middle/high school performed several drama skits, choir numbers and a karate demonstration. I even had the privilege of meeting Dr. Temple Grandin, a renowned researcher and scholar who also happens to have autism herself.
So we were listening to Dr. Adam's overview of recent findings from past research projects when my autistic teenager turned to me and, with a troubled look on her face, said "Mom, he's making it sound like this horrible thing. Why would he say something like that about me?"
Although at the time I merely murmured something soothing at her to keep her quiet during the presentation, her simple question stunned me to my core. It just so happened that I had been reading an article just the day before by scholar Rosemarie Garland-Thomson, an Associate Professor at Emory University whose work focuses on disability theory. According to Professor Garland-Thomson, the concept of disability is one that "pervades all aspects of culture: its structuring institutions, social identities, cultural practices, political positions, historical communities, and the shared human experiences of embodiment." Due in part to the rise of science as the end-all, be-all of knowledge about bodies (and, more specifically, the diseases, injuries, or other deviations from the "norm" of the healthy human body), our daily lives are inundated with discourse about deviance, about difference, and about discrimination, only couched in the supposedly objective dialects of scientific theory and research.
Having raised a child with autism for thirteen years, I am intimately familiar with this discourse. In fact, I have used it to my child's advantage, participating in the categorization and differentiation of disability in order to secure therapies, educational programs, and other various life-enhancing benefits. I have attended many conferences and sat through many presentations like the one Dr. Adams gave, bearing witness to a medical community devoted to finding not only a treatment for autism, but a cure.
What I realized, sitting next to my autistic daughter, in the blue glow of yet another medical presentation, is that she does not consider herself in need of a cure. My daughter is not broken, or ill, or disabled. Her autism is a part of who she is; she understands that people treat her differently because of it, but she doesn't see a need to change herself to please them. She is a whole person, and a generally happy one, as long as she is shielded from the shaming, debilitating narratives that would have her labeled, dosed and "normalized" as rapidly as possible; that would have what makes her extraordinary disappear.
I understood, in an instant, what Professor Garland-Thomson meant when she claimed that "disability is a culturally fabricated narrative of the body," a fabrication that nonetheless has real, material consequences for the people about whom such artifices are made to represent. That night, what my daughter was asking me to do was to resist, with her, her own public devaluation; to resist the discourse of wrongness attached to that part of who she is, and once again to make it right. She was asking me to resist, with her, the oppressive stereotypes "that permit, among other things, the unexamined use of disability terms such as crippled, lame, dumb, idiot, moron" and so on, to acknowledge and validate her decision to claim her autism, to claim her emerging identity as-is. If she, from her place of marginality, can ask this of me, what else can I do?
*All quotations taken from "Integrating Disability, Transforming Feminist Theory," published in NWSA Journal 14.3, 2002.
