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Friday, October 7, 2011

Stephen Kuusisto: Words to Make You Think

Over the last few years I have mentioned many disability rights oriented blogs. I have my favorites of course and among the blogs that never fails to impress me is Stephen Kuusisto's Planet of the Blind. If you have not read his blog and published work--especially his memoir Planet of the Blind--stop reading these words. Go to his blog or better yet buy one of his books. Kuusisto is way smarter than I am. His writing is head and shoulders above anything I have published or posted here. He is also funnier than I am. By funny I mean it in the rarest of ways--he can make you laugh and think at the same time. Okay, my man crush is over. You get the idea--Kuusisto is funny, smart and a gifted writer. If an academic could have a fan club I would be a charter member.

Remember the above words as I want to take Kuusisto to task. He put up a post on his blog, Essay on the Politics of English Clarity and Them Folks with Disabilities, that has me puzzled. I have read the post a dozen times in the last few days and am no nearer enlightenment. One thing, however is clear, the post has me thinking long and hard. It is also a fine piece of writing. For instance his words about what he calls the post human age, the mix of technology and the body, will blur the line between what is perceived to be normal and abnormal. Kuusisto astutely uses the example of well-known amputees Aimee Mullins and Oscar Pistorius. He writes

"that while prosthesis may become no different than the brand of automobile one drives, invisible disabilities or those that produce a public misapprehension about intellectual capacity (blindness, apparent deafness) will remain problematic in the town square. While physical difference can become fashionable, disablement as a capacity of mind is more difficult for the public nerve. In Western tradition we tend to believe in the mind as a substance rather than an essence, we cherish thought that is fast and muscular but denigrate neuroatypical thinking. We believe in “mind over matter” and imagine that those with learning disabilities or who are on the autism spectrum are simply not doing enough pushups."

Yes, the public nerve is fickle when it comes to disability. To me my wheelchair is an empowering adaptive device. For the general public, a wheelchair is the ultimate symbol of disability, infirmity, and total lack of personal autonomy. My wheelchair has no cool factor, its presence, my presence, a tragedy. In contrast, Mullins and Pistorius prostheses and the technology involved is lauded and valued. Prostheses arouse the notion of science fiction cyborgs that have captured the public imagination since the Six Million Dollar Man was one of the highest rated shows on television. We can rebuild him I think was a catch phrase. But exactly what are we rebuilding? A body that is socially acceptable. Given this, little or no value is placed on wheelchair technology. Instead we get preposterous devices such as the exoskeleton.

The above is where I stopped comprehending Kuusisto. He goes on to write that the politics of language demand precision when it comes to disability. We cannot, he maintains, afford to be fooled. He then refers to Nancy Mairs who embraced the word cripple. I like the directness of the word. I have lost use of my legs. I am indeed crippled. No fooling. Like Mairs, I want to believe I swagger. I am not meek, I am strong. Part of this strength I derive from my crippled body. And here is where Kuusisto loses me,. He concluded his post:

"Mairs writes famously, “as a cripple, I swagger” a position that’s unassailable given the economic abjection in “disability”--that Victorian term still tied to the factories of the Industrial Revolution--it was Karl Marx’s noun for those who lacked the economic utility to be useful workers. Surely “disability” does not swagger. Moreover the word carries no degree or standard of completeness. This is its signature problem for if a cripple is entire, singular, and freed from oppositional enactments with ability, a person with a disability is trapped in a triangle of etceteras--unable, etc; incapable, etc; accordingly, vaguely sub-Cartesian--sans thought, etc. Disability disorganizes conduct and places physicality outside of possibility. So the term has less to do with opposition to normal activity and a good deal to do with a prejudicial conspiracy against the mind. Just as nothing in nature is truly broken, just as evolution defies the normal, there is no proper categorical or taxonomic position that can hypostatize variance or give it a name.
As I’ve said more than once I prefer “world citizen” to disability. I prefer omnimodal essences and motive power.

I have read a lot of Marx. I have read plenty of disability theory too. I know exactly which work of Mairs Kuusisto is referring to. And yet I am perplexed. First, physicality is not beyond the ability of crippled people. I ski, kayak and have fathered a son. All this take a measure of physicality. Second, we cripples have a place in society. It is not a "taxonomic position" I enjoy, in fact it one one I rail against. Namely, we cripples are far from equal and perceived to be damaged goods. Like Kuusisto I do all I can to undermine this societal assumption. Third, the preference for "world citizen". Give me a break! People look at me as though I have two heads when I use words like cripple and ableist or ableism. If I were to use "world citizen" I would be laughed at and mocked. I can hear my friends now "I think you smoked too much dope in college man. Go hang out with your Occupy Wall Street buddies".

Here is where I think I differ with Kuusisto. I live in a gritty and at times a bigoted nasty world. I struggle as a part time academic, writer, activist and jack of all trades. Will do anything for a living sort of guy. This is not sour grapes, just the way things worked for me. Kuusisto in contrast is a big time academic and works at a top flight university. He deserves everything he has worked for as he too lives in a gritty and bigoted world. But, and you knew a but had to be coming soon, he has a place to hang his hat and be respected. Most crippled people have no such place where we are respected. Hence I am stimulated by Kuusisto's work, delighted by the way he plays with words yet found his post distressing. Where is its connection to the ordinary and gritty world and average crippled person? Not all cripples know Marxist theory and Nancy Mairs work and I consider myself lucky to be able to grasp most of what Kuusisto wrote. Sadly, most cripples are too worried about their meagre benefits being cut, losing their home. accessing mass transportation, or finding work. These people, my people, are always in my thoughts.