The Blackwell Inn was a big lavishly decorated hotel, and the conference was held in the ball room. I saw Steve Kuusisto moving up to the podium and talking to his dog “Come on, girl.” Moving in unison with the dog up to the podium. He introduced himself, his guide dog Nari, (Who “by the miracle of frozen sperm” is from his last dog), and began to explain disability as a mode of perception. The ability to re-claim “embodiment” (How our bodies are perceived.) is as ancient as language, he argues.
Steve was funny, articulate, and poetic. Frequently, he made allusions to other poems, or modes of perception that “re-claim embodiment.” That is, he examined the inner world of disability, its lived experience, in contrast to being defined as reified (lacking. Blindness being the absence of light. Deafness being the absence of hearing, etc. In his poetry, he describes his dog as being much more than a dog; that sometimes they are one being. This is actually how I feel about my wheelchair too. He tells stories of watching drunken men in wheelchairs eating flowers, and wrote about that poetically. Through poetry, Steve gains insight and a unique epistemology.
The practice of Disability Studies (which at many points he named “crip theory” which I still don’t like, but its nonetheless a valid use.) is to invert questions of physical ontology into epistemological questions: How do we know what we know? Because disability is a mode of perception. Physical form itself is related to self-consciousness. Steve talked about disability as “The First” mode of perception in fact, because in the able-bodied mode, once the bodily function of language is mastered, they are made to forget that it was a learned activity until sight, language, mobility, sound becomes natural and normative.
Between interjected poems, imagery, and jokes of poetry being “exquisite bullshit” he would occasionally take autobiographical turns, and talk about his travels through Graz, Austria with jazz musicians, or his surgery to correct his cataract, which is now gone, but he is still blind and able to make out shapes which he described as being like a “ball of light.” His grasp of poetic analysis is such that it was a rich-spirited experience.
But, the crux I felt was really in his stories of “passing” as sighted. Herein was the lesson for me, as even though I employ language willfully to highlight the intrinsic experience of my disability, as Steve does, I feel alien in my out body when my language must of necessity throw me back out to an “able-bodied” world. Steve talked about thus “passing” as not blind, so that people wouldn’t attach a stigma to it. And then, he got tired of not going places and said “Enough is enough.” and just realized that people will stare regardless. Being blind was part of who he is. It forced me to ask myself if I was in some ways “passing”, by cutting myself out from a community to whom I must constantly reassert my linguistic control, lived body, and strong mythological culture; with the exception of when I do ethnography and can understand disability as a valid mode of perception within that social structure. Of course, that’s what I’ve been trying to say along.
But, Steve made me feel that I was not alone. And that for me was most empowering. I loved his imagery that he and his dog were a centaur, and the angel beings passing by in balls of light. He said it helps to be around brave people, as well. I suspect that Steve realizes the importance of a strong culture, mythically, socially, politically. Although, I don’t necessarily agree with the WIDELY held claim apparently, that Disability Rights/”Crip Theory” (which still makes me cringe to hear, “cripple” being in my mind, negative.) can be equated to “identity politics”. Such as women’s rights, African-American rights, gay rights, etc. Though it wasn’t in the talk itself, he answered a number of Q&A period questions by using identity politics. It’s a complex issue, I know, and I won’t dwell on it, suffice to say that the spectrum of Disability needs and rights is so diverse, and so numerous, that I don’t think there can ever be a Mass Disability Rights Movement. I believe in individuals asserting their political human rights, but not in the way that, say, Women’s Rights could address issues of sexism. Disability rights are human rights, in mind, and should not be treated separately. Anyway, the Q&A and the political movement part threw me out of the poetic, and we were back to in my mind examining disability as a lack…as Steve says “reified”.
But, I carry that idea of that culture with me. I loved his poetry. It was so freeing. So life-affirming and self-conscious, and yet he faced it bravely. And I learned, in talking to him later that he thought any mass movement, would be “grassroots, coming from individuals making and understanding the new media.” Well, as a Communication and Media theorist, that’s exactly what I wanted to hear! So, I might have pegged him wrong at first. He mixes “identity politics” and media theory. It’s not one or the other. Very assertive and intelligent man. His dog Nari, is a beautiful Yellow Labrador, by the way. So glad I went and was able to discuss Disability Studies with him a bit. I felt at home again, like in class.
It was a very beautiful, very creative presentation, and left me braver and stronger with the knowledge that the poetic outlook in Disability Studies is a prominent and valid one. Each of us is constituted by the self-awareness of our bodies. Ishmael had scars. Ahab had a peg leg. And yet, they kept on after Moby Dick, in spite of it. Each one of us is constituted by re-claiming our environment through language. Fabulous talk, and validated everything I’d learned and more! A lot to think about. And a lot to take in intrinsically, as I reflect on who I am: The Hero.
