- Disability Studies Now
Ralph James Savarese’s essay “River of Words, Raft of Our Conjoined Neurologies” (2012) provides an eloquent and moving account of how his autistic son D. J. emerged into literacy. As he learned to read, D. J. experienced extreme, often painful identifications with literary and historical figures. Like Harriet Tubman, he saw himself engaged in a type of “political freedom fighting” (43) on behalf of those, like himself, who can’t speak and instead type to communicate. Much as I loved the essay, I was dismayed to find that D. J. described this group of autistics as oppressed by the mistaken presumption that they are “retarded” (45). I am the parent of a child with Down syndrome, and the ugly word “retarded” never fails to hit me like a slap in the face. I could understand D. J.’s resistance to being branded with that stigma and his own need, as a child who had been abandoned by his birth parents and brutalized in foster care, to affirm himself in this way. But I was also reminded of a regrettable dynamic in which people with disabilities often justify their own value by asserting their difference (and presumed superiority) to some less-capable group. During an illuminating email exchange, Ralph mentioned my reaction to D. J. Here is how Ralph related their conversation to me:
“All I said was that I resent testing that mistakenly identifies kids as retarded,” [D. J.] persisted.
“I know, but what if you had said that you generally resent mistaken assessments of human potential and value?”
“Auties and Downies and all sorts of disabled people together? That would have been better,” DJ conceded. “Please understand that I intended no insult. I wrote that line in middle school.”
I value this exchange for exposing the very real difficulties of imagining Disability with a capital D, a category capacious enough to [End Page 495] include not only “Auties and Downies” but people with such disparate conditions as paraplegia, vision impairment, deafness, chronic fatigue syndrome, and fatness. The challenges of maintaining such a category are evident in the teenaged D. J.’s objection to being associated with the reviled label “retarded.” Quite sensibly, he tried to escape by proving his own abilities. It is to his credit that, in hindsight, he could see the possibilities of an alliance with others who have been devalued by limited standards for judging worth and potential. It is the work of disability studies scholars and activists to determine how best to define and theorize an umbrella as vast and unwieldy as Disability in appropriately inclusive ways.
Disability studies has now been around long enough to have an institutional history of its own. In 2003, historian Paul Longmore documented two chapters in the emergence of disability studies that correspond to the trajectory of many prior identity-based fields. The first involved a struggle for civil rights that culminated in the landmark 1990 Americans with Disabilities Act. The next comprised the search for collective identity and creation of a disability culture. This second phase corresponded to the emergence of disability studies as an academic field.1 But even as Longmore was writing, that sense of collective identity had begun to fissure. New work in the field attests to the emergence of a third, and overlapping phase of disability studies, in which tensions and conflicts come to the surface. The signs of this third phase are found with particular clarity in two interrelated areas. On the one hand, there is a growing investment in probing the challenges and opportunities of intersectionality, as disability scholarship explores, in increasingly complex ways, its affinities with, and divergences from, other fields devoted to the study of identity. On the other, there continues to be an ongoing...