Memoir is perhaps the most problematic of genres, allowing memoirists the absolute power to speak for and about their subjects. This carte blanche is especially problematic when the subjects in question are disabled and presumed to be incapable of speaking for themselves, contradicting one of the central demands of the disability rights movement: Nothing about us, without us!
Mark Osteen somewhat avoids the problematics of representation in his memoir, One of Us, by subtitling the book "A Family's Life with Autism." The title is apt, because what Osteen presents here is an honest portrait of a family under incredible stress as it tries to cope with the needs of a child diagnosed with autism. The family dynamics certainly ring true to my experience, and I think it would be fair to say that most parents of autistic children could relate to Osteen's narrative, including his descriptions of his son Cam's disruptive, sometimes aggressive behaviors. Equally engaging is his account of a marriage pushed to the breaking point as husband and wife confront the difficult decision to place Cam outside the home, a decision fraught with guilt, remorse, and uncertainty.
Osteen tells his story in scenes rendered in great detail, at times more detail than some readers might want: scenes of two involved but frustrated parents trying to meet Cam's needs, constantly negotiating with teachers, aides, doctors, therapists, and everyone else involved in Cam's life. Unfortunately, these vignettes, though illustrative, tend to reinforce mainstream views of autism by portraying Cam as "the child who is debilitated by the condition, who will never be cured." What's missing is an analysis that would question, or at least tease out, the pro-cure position advocated by dubious (from the point of view of the Autism Pride movement) organizations like Autism Speaks.
Thus, from a disability studies perspective, One of Us has its limitations. Osteen doesn't challenge the medical model of autism, nor does he explore the notion of autism as neurodiversity that has become prominent in the autism community over the past five years. Like most memoirs, One of Us is also limited by its lack of other voices, other points of view. I think the disability memoir in particular demands that disabled people be presented as subjects, not just objects. Osteen does allow Cam to speak on occasion, and he does make an effort to detail Cam's body language, and yet curiously he writes in the epilogue that Cam "can't speak for himself" and thus, in this sense, "his story may never be told."
To get another side of the story, I would recommend reading One of Us in conjunction with the work of an autistic writer like Amanda Baggs who was herself placed in an institution as a child because of her behaviors and her perceived inability to communicate. Today, ironically, Baggs is one of the most articulate and prolific of an increasingly visible and highly networked community of autistic people who view autism not as a disorder that needs to be corrected but as a form of neurodiversity: the autistic brain is simply wired differently from the neurotypical brain. Baggs uses a combination of computer-assisted and multi-media technology to communicate, and like many other auties and aspies in her community, she considers Autism Pride to be a civil rights movement. Especially enlightening would be her YouTube video, "In My Language," and her recent posts on being labeled by neurotypicals both inside and outside of institutions in her blog, Ballastexistenz.
