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Tuesday, September 30, 2014

Cripple Identity: It's the Freaks that Matter

I have addressed the issue of identity multiple times on my blog. Last night as I watched a ragged pre season NY Rangers hockey game my mind kept drifting to issues relating to identity. In part my thoughts were influenced by my honors class about disability and bioethics. Yesterday we spent most of the class discussing Harriett McBryde Johnson's novel Accidents of Nature. I use this book as a teaching tool. It is an easy read and a welcome break from dense articles usually assigned. Written for a teen audience, complex concepts are raised that I suspect change the way young people think about disability. Remember kids, unlike many adults, are open minded.  McBryde Johnson sets the perfect tone. The two main characters are perfect foils--Sara the opinionated sarcastic bad cripple and Jean the good girl and compliant cripple.  The novel is largely about "Crip Camp" and how Jean changes as a result of being around other people with a disability for the first time in her life. In a mere 10 days Jean is exposed to a community she did not know existed. Community here is not quite accurate. Jean was exposed to disability culture. Such exposure for the un initiated is often shocking. Reading this book sparked many memories of my first encounter with people with a disability. I was 18 years old and weighed under 100 pounds. I was medically stable for the first time in a decade. I was naive in the extreme and recently paralyzed. Obviously I met other people in rehab who had a dizzy array of disabilities but one and all did not identify as crippled--that includes myself. No one used the word cripple or identity and disability as a civil rights issue was in its incipient development. By 1978 many laws had been passed that provided basic human rights to people with a  disability. Section 501was passed in 1973. IDEA was passed in 1975. The ADA did not exist but the ground swell of legislation was clearly designed to empower people with a disability. Along with millions of others I was a direct beneficiary of the law.

The legal fight for equal rights of people with a disability was being won but the social struggle for equality was and remains a glacially slow process. In looking back at my first exposure to a large number of people with a disability in college I was taken aback. I knew I was different. I knew using a wheelchair resulted in a stigmatized identity. I hated this. I did not hate my body. I was learning and the most important part of my education did not take place in the class room. In four years of college I learned more about my body than I ever did in rehabilitation. Rehabilitation professionals were clueless and the field remains deeply problematic to this day. When I showed up at college other people with a disability, hard ass survivors, were kind to me. They taught me the life lessons that have enabled me to not only survive but thrive. By thrive, I mean live a typical life. And part of that life now revolves around disability as an identity.  McBryde Johnson gets to the heart of identity in her novel. As was the norm at the time, she went to segregated schools for disabled children. Education in these "special" schools was typically inferior to a public or private school for typical children. There is obviously a large part of McBryde Johnson's life experience in both Jean and Sara. Some of the dialogue in the book is perfect.  In fact some passage remind me of children's book written in the 1920s and 1930s written by socialists designed to undermine accepted wisdom. For me,a few passages in the book leapt off the page. First, was a discussion of Marxism and how it helps explain the world and "all that shit". When questioned why this was important:

She [Sara] leans forward on her folded legs. "Mainly because I'm trying to figure it out, being crippled. Why are we the dregs? Why are we the outcasts? Because we deserve it? I don't think so. It's because of injustice. It's a failure of capitalism. Capitalism wants individualism, self-reliance, competition. If you can't compete, you starve. None of those things work for us. 
I shouldn't encourage her, but I'm a little curious. "Are you say-ing we can nev-er fit in?" "Not truly. But in not fitting in, we're like the vast majority of people under capitalism. They don't fit in, but they don't know it. Marx talked about the alienating power of capitalism, which means most people become misfits, foreigners in their own countries. We try to fit in; we think we can fit in by imitating those who control things, but its an illusion. False consciousness". 

The hard part of the disability experience and aging has been the realization I will never fit in. I will never be perceived by others, typical others, as ordinary. My very existence will forever generate hostile, awkward, and at times strange reactions. This bothers me. It bothered me in 1978. It bothers me today. A large part of me does not get it.  I use a wheelchair and cannot walk. Get over it people. This is why via the written word I mock the bipedal hordes that surround me. McBryde Johnson got this. She wrote:

walking is something you can mock. Not walking as an ordinary means of getting around, but Walking as a big dramatic idea. Walking is a metaphor for striving of all kinds. When I gave up my childhood struggle to walk, it felt like a failure of something much greater--a failure of courage, of character, of faith. Yesterday Sara suggested that walking might be a matter of choice. Today it's a joke. A joke so funny I can' stop laughing. 

The social value placed on walking boggles my mind. It is indeed laughable. Of course I know the human body from an evolutionary perspective is designed to be bipedal. I also get the inability to ambulate causes secondary complications such as poor circulation. I get that paralyzed people such as myself are at a higher risk for digestive and urinary issues. Skin care must be diligent. All this can be managed. In fact I see no difference between the way I successfully manage my body than others who are bipedal. Bipedal people bodily management is not that different. High cholesterol is common as is diabetes and a host of other supposedly ordinary health issues.  The real problem is not within the body but rather to the social response to the atypical body. If I walked into a health care setting as a white, middle aged man I would be treated with a modicum of respect. Because I do not walk in the door and have an obvious disability the social response is often negative. I have plenty of horror stories but I am essentially profiled as a problem and perhaps extra labor for staff. The real issue is that I am and remain a symbolic failure. I represent the limits of medical science. Bigotry sent my way is seen as acceptable--worse the bigotry is not even acknowledged as such. Thus I read a tweet the other day "nothing sadder than a hot girl in a wheelchair". People, typical people, were stunned when the reaction was fierce and hostile. In much the same way when I vigorously express my opposition to growth attenuation or utilitarian theory I am supposed to contentedly overlook the fact my existence is subject to a good natured philosophical discussion.  Sorry but no. My life has value. I am a human being even though others might not think so. Paging Peter Singer! McBryde Johnson gets my rage. She uses a controlled fury in a way that is highly effective. A character in her book, a veteran of "crip camp" states:

"Come on Sara," Willie says gently, "you and I have been coming here a long time.  We know its nuts.  It's always been nuts. It'll always be nuts. We can't expect it to be sensible. It's a camp for Freaks; we know the Norms that run it don't have a ghost of an idea what they're doing. But they don't matter. The Freaks are what matter. You know that. We share something here. Even though it's nuts, it ours. Am I making sense?"

This makes perfect sense to me. It makes perfect sense to my fellow activists in ADAPT and Not Dead Yet. It makes sense to those working in disability rights. It makes sense to all people with a  disability that have taken the time to stop and think about the skewed reactions their presence creates. It makes sense to many of my colleagues in bioethics (though certainly not all).  It had better make sense to every scholar working in disability studies. I think those that truly get life as a crippled person and who identify as such need to let their freak fly. Embrace difference. Embrace the atypical body. As I get older I am increasingly inclined to say fuck em and embrace life as I know it. Social slights do not broil my guts as much as they once did. When I get stared at I stare back. When required I am polite but can be confrontational. As I age, I think I am trying to embrace my inner Kurt Vonnegut. Vonnegut was and remained until the day her died defiant. His many fine books, especially Slaughterhouse Five, revealed the power of human imagination, creativity, and ability to adapt. I accept all others as valued humans beings--capable human beings. I wonder when confronted with any body, typical or atypical, what can that person do. I guess this makes me a radical. Not a pleasant thought.


Unknown said...

I got my cripple education at 13. I had a teacher who was very keen on getting me out amongst other cripples and he more less demanded I started participating in athletics by giving me a magazine from the National Disabled Sports Association and telling me I could choose the kind of sports I wanted to participate in.

I chose wheelchair basketball as it looked like the coolest sport in that magazine. I was thrown to the lions when I showed up. Everyone was at least 10 years older than me. Virtually all of them were part of the last wave of polio to hit our country. And boy, did they teach me a thing or two about survival as a cripple. The pride they carried having grown up together. They had a way of speaking and joking that I still to this day can only use with a very small group of individuals - to say it was extreme might be an understatement. But it taught me to look at myself as someone worthy and to let my freak fly free.

william Peace said...

Henning, I too was helped by wheelchair baseball players. I was not good at basketball but that was not the point. For the first time in my life I was surrounded and interacting with people who had a myriad of disabilities. I learned more from them about life than I ever did in rehab or a classroom I wonder about today. Where do newly minted cripples get educated about survival: that is physical care of the body and an ability to shrug off and combat ableism.
Your comment made me think of a university. Crippled University. CU. We need to form this sort of institution of higher eduction!

Unknown said...

Bill, Crippled University sounds like a phenomenal idea. There ought to be enough crippled scholars and ones with advanced degrees to actually make it happen. Imagine having a exclusive institution that was built on a true understanding of empowerment and not a segregated one founded on some ableist charitable idea, like all the ones that I have ever known. Imagine the students who would come out of such an institution – they could easily put us old geezers to shame.

Unknown said...

As I'm sure my latest blog post would probably attest, I have never received my "crippled education". For the last six or so years I have been cut off from even "normal" society, living it through the window of social media. I can totally relate to the feeling of utter defeat when I conceded to no longer walking, something to which I have still yet to bounce back from. This concept of a "disabled culture" is mind-boggling to me and something I think I really need. The idea of a crippled University should be taken completely seriously, to which I would be both a student and a teacher someday. I have been seriously considering going back to school to get a philosophy degree and have been searching for my voice. The philosophy of disability. Sounds like a perfect fit. Thank you so much for your writing, and I'm going to be spending the next few hours reading your earlier articles.

Stephen said...

Don't let the bastards get you down. I'm 66 and still fighting the creeps and bigots. While doing that I had a great business career as a self-employed business person up to doing an IPO. Then I retired to use the right side of my brain in writing and music. 3 wives, 10 kids and 8 guitars. It's all good.