Here are some notes on what I've been reading on the disability rights movements. Yes, yet another very long deteriorating rant. I think I would rather be in Genoa, but maybe not---you all looked great on the few media clips I saw.
I would say generally disability rights history is dominated by bourgeois bunk and riddled with gross historical inaccuracies. I am using what I know of the Berkeley movements, their organizations and their history as a measure. These are unanimously mis-represented, mistakenly characterized and inaccurately reported. Even the elementary information of record is frequently wrong.
I can propose a number of explanations. First of course is the aggrandizement people report of themselves. Ed Roberts was particularly notorious for this. Judy Huemann isn't exactly immune either. That these public pronouncements would generate a completely deformed historical record, never occurred to them or anyone else for that matter, since the idea of history was never in mind. Both Ed and Judy became public personae early and had to generate what they considered a party line that communicated as much of the political message as they thought the media and a broad audience could absorb. Ed decided the personal story was the best medium and so he literally invented stories by the hand full. Judy on the other hand assumed the public personae of a social worker or school teacher and gave her speech a certain clinical and organizational ring. This is a complete fraud since she is a very sweet natured and highly emotional person.
Even the `ABC-CLIO companion to the disability rights movement', compiled by Fred Pelka is mediocre at best. I have to assume the only possible strong points are the non-Berkeley organization sketches and legislative history. Since I've personally known many of the people listed (Roberts, Hessler, Breslin, Wade, Zukas, Markus, Wright, Heumann, Hotchkiss, Kaplin, Golden, Funk, Draper, Kemp, Savage, Mayerson, and others) in the ABC-CIO I can honestly say the impressions given are very pale at best and many of the so-called facts of their lives are out right wrong.
Probably the worst problem with the Pelka study guide is the weight it gives to traditional liberals or hidebound conservatives, which leaves the impression that all this civil rights activity was perfectly okay and to be expected of a progressive, modern society like ours. It essentially effaces what I think of as the inherent radicalization that a history of disability should force into the fore of any socio-cultural document. After reading about people I know or have known in the past, and following through some of the organization histories, it would be impossible to use this companion and discover that there are immediate, pointed, and profound applications of Marx, Levi-Strauss, Sartre, Foucault, Bourdeiu, Deleuze, and a long list of others in left radical history and literature.
Of the books read so far, Marta Russell, Henri-Jacques Stiker, and James Charlton stand out as definite exceptions to the above condemnations.
However, when Russell or Charlton relied on previous work, particularly Shapiro, they replicated his mistakes.
Shapiro's account of the 60s and 70s in Berkeley was wrong and misleading because he relied on Robert's and Heumann's reporting, and he replicated their distortions and perspectives. He heard or saw their public personae and reported it without going any further. So I would urge any one considering research or interest in this field to re-do the ground work. At least consult the UCB Bancroft library in Berkeley. There are oral histories, letters, papers, and organization miscellanea housed there that needs to be seriously re-examined. The Bancroft also has sections on the Free Speech, Anti-War, and Third World movements and the library is starting a national and international archive section of these developments.
The books I've read in the last three weeks are in this order:
Russell, Marta, Beyond Ramps, Common Courage Press, Monroe, 1998 (re-read)
Stiker, Henri-Jacques, A History of Disability, Uni Mich Press, Ann Arbor, 1999
Shapiro, Joseph P, No Pity, Times Books, NY, 1993
Charlton, James I, Nothing About Us Without Us, Uni Cal Press, Berkeley, 1998
Pelka, Fred, The ABC-CIO companion to the disability rights movement, ABC-CIO, Santa Monica, 1997
Fliescher, Doris Zames, Zames, Frieda, The Disability Rights Movement, Temple Uni Press, Philadelphia, 2001. (This is unreadable. Got through first three chps, and scanned the rest.)
Tonight, I am starting `The New Disability History' Longmore PK, Umansky L eds., NYU Press, NY, 2001. I may change my mind, but it doesn't look good.
I think the general problem in this literature is the complete lack of contact with and understanding of the long tradition of radical and progressive history, theory, and literature. This problem is typified by the complete absence of any mention of Marx or even the use of more common european sources of historical and cultural theory. This is why Russell, Stiker and Charlton stand out as exceptions. Good for them. It is particularly true of Stiker. [Note to Marta. I just read your Monthly Review article last night. You should read the Stiker work above. It will help nuance thinking through the early transition into industrial capitalist society and the changes this wrought on people with disabilities. Michael Foucault is very good for this too.)
In Berkeley there were only a few people who could have written on disability within this more broadly defined historical and cultural tradition, but unfortunately they didn't. I'll mention them anyway. They would have written within one or another of the leftist postmodern camps on theory.
John Hessler could have written something if he had stayed through his PhD in French, since he would have inevitably read the post-68 generation. He was in Paris right after May 1968 on a graduate student exchange program and couldn't get into the Sorbonne to attend lectures. The street mess of May `68 barricades was so bad, that whatever could have been accessible wasn't, so he left for the country side in search of food, wine and sun. When he got back to Berkeley after that summer he was too busy working on disabled student organization and service projects in the spirit of 68--exactly in the spirit of Madness and Civilization, and The Order of Things.
The other two were Carol Geiger (I have give Carol a make believe last name, because at the moment I can't remember her real last name) and Peter Trier in the early 70s who were graduate students under Paul Feyerbrand, John Searle, and later Herbert Dreyfus respectively. Carol got a teaching job at the University of Santa Clara and Peter at the University of Arizona. Beyond their daily grinds with disability, they had a hard enough time trying to work their interest in philosophy into their respective teaching programs (failing in both cases) and never took on the intellectual task of transforming those interests into tracts on disability.
Carol and I argued many times over Heidegger. I think she wanted to some how re-construct him, and assert her own take in the middle of the still on-going Dreyfus v. Searle debate in phenomenology. I think the reason she was so taken by Heidegger was, he was the first philosopher she read who actually addressed the phenomenology of alienation, isolation, and the extreme metaphysical limitations imposed by a mass technological society---and its inability to construct a meaningful social science and philosophy of culture. I think, like me, she kept a thankfulness for those moments of her first readings, her first enlightenment. It was just a matter that she had started with Heidegger and I had started with Cassirer and Sartre.
I suppose it sounds ridiculous to regret that John Hessler got lost fighting the California bureaus of medicated confinement, control and punishment (county hospitals), and Carol disappeared into the very heart of the technocratic beast of post-modernity---Univ of Santa Clara is in the middle of Silicon Valley. If they were here, they might laugh at my rant, but they would certainly agree these histories are bad renditions---they would or I would threaten not to change their batteries.
I could pass off the above rather grim assessments of US disability history as simply my taste in reading, and that is certainly true. On the other hand, the US is at its core an isolationist and insulary society that has systematically attempted to render itself like its better known political leaders as an immature, naive, uninformed, bland and homogeneous mentality with a practical spirit and a good heart. It is of course none of these. This imaginary US personae is supposed to exemplify a certain social purity and moral rectitude that neatly colines with various imaginary historical figures such as the founding fathers and the mid-19c writers like Emerson, Thoreau and Whitman. It is all supposed to read like a kind of Kantian world of cleanliness, order and bourgeois goodliness. Of course it is a world where Franklin wasn't getting sticky finger in Paris, Jefferson wasn't frolicking in the slave quarters, Emerson wasn't an academic egomaniac, Thoreau wasn't a poverty ridden weirdo incapable of holding down a job, and Whitman wasn't a raving queer poet. Like, duh?
This imaginary Americana has informed most of our historical writing and completely dominates our traditional, so-called higher education. It should have been no great surprise to me to discover the literature and history of disability was completely permeated by this absurd mentality. But it sorely did. My problem is that I have seen and lived on intimate terms with some of this history, its people and organizations. What attracted me to the world of disability was its inherently radical assault in direct and concrete terms on exactly this Americana of the Good, land of the Free, home of the Plenty. What is particularly disturbing to me is the collective reading so far has attempted to position disability within this imaginary Amercana and then turned around and used disability to exemplify precisely what the concrete circumstances of disabled people lives put into question---this kind of bourgeois good---or bourgeois bunk as I prefer to call it. In these terms then the histories are profoundly reactionary in that they deny the material terms of their own subject and subjects. They efface their own concrete radicalization. Derrida would simply call them erasures.
This history is not a morality tale sung by good hearts. It is a miserable and on-going material chronicle of the most base sort of oppression, denial and silence, and it is composed of a long list of crimes against a humanity that has been defined as a monstrosity. Since this is a history of monsters, first their confinement and then their public effacement are not crimes but medication, therapy, cures, and normalizing social processes---all of which are performed in the name of that mythological clinician, Doctor America the Feel-Good. Pure bunk.
Speaking of Doctor Feelgood, one of the founders of the Berkeley CIL, Larry Biscamp (after John and Ed kicked him out of the first executive directors job so Ed could take his place) turned around and started a disability and sexual awareness project. Larry's gig was to get the scientific confinement normalizing medical freaks at UCSF med school to fund this project on sexuality (`74-76), and he succeeded. It only lasted a couple of years, but these were wild, greasy, hot, and twisted times---bright moments, heightened with plenty of non-prescription meds, and utterly aberrant sexual practices that ultimately generated a few definitely non-nuclear families, played against the landing of George Clinton's Mother Ship at the Oakland Coliseum. Thanks to Chris Dykema for reminding me of these leftist takes on the family---and nobody was signing contracts.
Meanwhile back at CIL, my son was teething on wheelchair tires. He liked Hale Zukas's powerchair for some reason. My ex-wife was busy writing up a curb cut plan with Hale and Eric Dibner. Eric was John Hessler attendant from the not seeing Paris for the barricades days. About this time I was sweating out a meeting with the Oakland Black Panthers to explain why I wanted to fire the only black kid in wheelchair repair at PDSP.
Here is a quote picked almost at random from Michael Foucault's The Order of Things, the limits of representation:
``In the nineteenth century, philosophy was to reside in the gap between history and History, between events and Origin, between evolution and the first rending open of the source, between oblivion and Return. It will be Metaphysics, therefore, only in so far as it is Memory, and it will necessarily lead thought back to the question of knowing what it means for thought to have a history. This question was to bear down upon philosophy, heavily and tirelessly, from Hegel to Nietzsche and beyond. But we must not see this as the end of an autonomous philosophical reflection that came too early, and was too proud to lean, exclusively, upon what was said before it and by others; let us not use this as a pretext for disparaging a thought powerless to stand on its own feet, and always forced to find support by winding itself around a previously established body of thought. It is enough to recognize here a philosophy deprived of a certain metaphysics because it has been separated off from the space of order, yet doomed to Time, to its flux and its returns, because it is trapped in the mode of being of History.'' (220p, Vintage, 1994 ed)
Chuck Grimes