I've been doing some reading in the field of disability studies. This is a newish interdisciplinary academic field that explores the social, cultural, political, and material meanings of disability. It's a field that I've been aware of since I did my dissertation back a decade ago. One of my chapters dealt with the prevalence of freak shows in the 19th century, and much of the most interesting work on freak shows was being done by scholars who located themselves in disability studies. Freaks, these scholars argued convincingly, are constructed by narrative. Bodies that might not fit typical models become "freaks" when a label and a story are attached, and the bodies are made into a public spectacle.
I was again exposed to disability studies a couple of years ago when a local Charleston activist and attorney called me on the fact that we were holding Women's and Gender Studies events in venues that weren't accessible. Initially I was defensive--"Well," I thought, "we're doing the best we can, and there aren't that many accessible buildings on campus!"--but then I realized that she was right, and I started rescheduling things. I read her autobiography, which disability studies scholars cite, and found it fascinating. Like the freak show scholarship, it forced me to consider how much of "disability" is culturally constructed rather than inherent or "natural."
When Maybelle was born I suspected I would return to the field of disability studies, but I wasn't ready to do it for some time. Then when she'd been around for a few months, a friend sent me a link to Michael Berube's blog, to this post, in fact, a post about his misconceptions about his son, Jamie, who has Down syndrome. I remember a flood of reactions, most of them related to relief: relief that his son was able to do so many things that he hadn't expected, relief that this was a prolific academic whose career hadn't ground to a halt because of being the father of a person with Down syndrome. Almost immediately after I finished reading the post, I searched around online and found information about Berube's wife, also an academic, and I quickly confirmed that her career hadn't ground to a halt, either--so the relief stuck. (It's all well and good for one parent to get to be a super star, but if that's because the other parent has become a martyr, then that's not a model that will work for our family.)
During the spring semester I read Berube's book about his son's early years, and it was the right book for the right time. It combined personal experiences with research and scholarly musings about the history of Down syndrome, the importance of rhetoric, and the meaning of genetics. Like the freak show research, Berube's book points out that the way we describe disabilities in large part determines their cultural meaning. For instance, the question of whether someone is "retarded" or "intellectually delayed" has real world consequences.
So Berube's book has set me on a path. I'm seeking out other things like it--books and essays by academics who are grappling with disability studies from a personal as well as a scholarly perspective. I've been reading Eva Feder Kittay, Rayna Rapp, and Rosemarie Garland Thomson. If you know of others--particularly academics who have kids with disabilities--let me know in the comments section. I'm sure I'll have more to say here.
10 years ago
2 comments:
I looked to see if Elshtain ever wrote anything personal and other than the preface of some book in my office, there seems not to be much (on the other hand she has written upwards of 10 books -- a pretty good record for not losing one's mind or focus...). I loved Berube's acknowledgment that he had just f-ed up in deciding what Jamie's future was going to be. There is something there for all parents.
Alison,
I think I mentioned this to you the other day, but there's a really fascinating essay on disability and inequality in the Race, Class, and Gender book I borrowed from the office. It's by Douglas C. Baynton - have you heard of him? I did a quick search for his stuff on Ebsco and a lot came up - it looks like he writes mostly about signing/deafness and the social history of disability in the US. I thought his work was particularly compelling, though, because instead of just discussing the social construction of disabilty (historically and currently), like most other disability studies scholars i've read, he concentrates on the ways that accusations of disability have been used against marginalized groups - and how those marginalized groups have, in effect, reinforced the subjugation of the differently-abled (or whatever you want to call it) by angrily refuting the accusations (rather than questioning why disability is automatic justification for discrimination in our society).
The essay I read, for example, cites slaveowners' justification for slavery on the basis of African-Americans' alleged lower intellect, etc - something that I knew happened, but I never made the connection with the oppression of disabled people. he also discusses the women's suffrage movement, and how its opponents constantly cited women's alleged biological weaknesses (mental and physical) as reason for exclusion from politics.
i think the connection of disabilty-slavery-women's suffrage is really interesting, especially since i know that many suffragists (including Elizabeth Cady-Stanton) fought for women's rights by insinuating (or just outright stating) that women were more intellectually sound (read:abled) than black men, as they were concerned black men would get the vote and women would not.
ay yi yi, i got pretty excited, sorry for writing a dissertation-length comment
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