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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.

Sunday, September 28, 2014

Strange Days Make Me Weary

I have not written a post in a long time. In fact my posts have been few and far between. My move in August entailed many trips to and from the Syracuse area. The logistics of moving were daunting and aggravating. Yet I am really settled and progress has been made. I can drive to work and Wegman and many other places without getting lost. I have established some friendships that I truly enjoy. Work is great. I am teaching two classes this semester, one graduate and one undergraduate. All in all, I am quite happy. So why no posts? Two reasons: First, on the first week of work I developed a minor wound on my ass. I was so excited teaching I did not relive pressure often enough during the day hence I developed a small wound. The wound took two weeks to heal. My rational brain knew the wound was very minor. Smaller than a dime. Zero depth. A really minor issue. But as paralyzed people can attest a minor skin breakdown can blossom into a life threatening wound in a shockingly short period of time. My problem was not healing the wound but the trigger affect it had on my mental health. My year in bed in 2014 has left me with visible and invisible scars. The most minor wound sends me reeling. My judgement is impaired and my mood turns dark--as in situational depression. I was not a happy camper. Spending every possible moment off my ass put me in a somewhat dependent state. This resulted in many nightmares. Friends came to the rescue both on and off campus. I essentially lost a month. It took two weeks to heal and two weeks to build back my sitting time to typical.

The second issue that prevented me from writing was a lack of desire. I was weary. Weary of educating people about disability. This overwhelms me at times. Every day I read one depressing story after another about disability. I do not go out of my way to find these stories. They abound. A "wheelchair bound" person is struck and killed by a car. The lack of curb cuts forced the man into the street. A paralyzed Detroit rapper escaped a gun fight by crawling out of a building in fear of his life. The police initially refused to give him back his wheelchair and later admitted they lost it. He is carried by his brother now. I read about a blind man and his guide dog that were refused service in a restaurant. A women using a wheelchair got on a NYC bus and passengers started verbally abusing here because they had to remove their packages from the one area she could occupy. For me, I parked in Syracuse recently and when I returned to my car a person had parked so close to me I could not get in. I waited almost an hour before calling a friend who drove from her home with her son. She backed my car up so I could get in.

Most people with a disability I know experience periodic weariness. The same can be said for parents who raise a child with a disability. Heather Kirn Lanier who maintains the blog A Star in her Eye wrote about how the size difference with her two young girls, one typical and the other with Wolf-Hirschhorn Syndrome leads to rude and intrusive questions. Link: She wrote:

Maybe you’ll think I’m not generous enough. Maybe you’ll think I should engage more fully with a stranger’s questions, take them as an opportunity to explain my daughter. I would probably think this about myself if I were you. But reader, I’m tired. Tired of hearing “Twins?” at least twice when I leave the house with my girls and tired of strangers demanding that I answer. I’m tired of the confusion my honest answer brings, and tired even more so, tired especially, of people commenting on the bodies of my children in ways that most people do not comment on the bodies of most adults. “You’re so short,” I never say to anyone. “My, aren’t you wide for your age,” or “Wow, you’re so old/skinny/stocky/loose-in-the-hips,” I never, ever say. These lines of questioning seem like demands that I answer up for my family’s difference. They feel like tourism encounters, in which the questioner is the tourist, and my family is the tourist’s unique experience to have. Guess what I saw today? A three-year-old who was smaller than her one-year-old sister. These questions turn my family into a walking “See the Smallest Woman Alive!” show. Suddenly we are standing inside a box with a peephole, even while I thought we were at the farmer’s market trying to buy butternut squash.
I can relate to the above at the core of my being. Weary. Oh I was ever so weary until yesterday. A close friend offered to watch my my beloved lab Kate over night so I could get my bike. The bike takes up the entire back of my car and Kate cannot fit in. The alternative, a hitch, is too expensive to buy and install on a car with 115,000 miles. On the drive rather than thinking about work my mind was stuck in a loop. Why has the ADA failed to resonate with the masses of bipedal people that have a hazy idea a law was passed a long time ago and as a result all my problems were solved. Evidence of the success are little blue wheelchair logos signs that we see daily. The fact such signs often lead to nowhere is dismissed. In short, I remain stuck educating the population one by one. Given how resistant many people are to learning, and add in a  healthy dose of people that think disability rights is political correctness run amuck or an unfunded Federal mandate, I need about 50 life times to educate the population. This is a counter productive mind set. It resulted in me reading and discarding many possible topics I typically post about. The proverbial bridge was damned and was thankfully blown up yesterday by my friend that watched Kate. Kate is a wonderful dog but she has always been quirky. One of those quirks I am responsible for. She does not do steps. In fact she is afraid of stairs. I am the flawed or responsible owner and trainer.  I see stairs as a needless obstacle. I saw no point in teaching Kate how to navigate stairs. In retrospect this was a mistake. Kate can go up and down stairs if motivated and greatly encouraged. This is a real pain in the neck and takes time.

Why am I discussing Kate's refusal to go up and down stairs? My friend that took care of Kate lives in a  typical house. That means there are stairs to enter and stairs to go up to the bedroom and office.  Stairs did not enter my realm of my thinking when we figured out the logistics of one night pet sitting. Stairs never entered my thought process. We chuckled about this and when my friend dropped off Kate she said "See. You did not think of stairs! In much the same way I do not think of ramps or lifts or elevators or accessible bathrooms". Oh how easy it is to forget about the needs of the typical bipedal population. Heavy sarcasm here. Oh how my heart breaks. Joking aside, education is in fact important. Exposure to different bodies, atypical bodies, requires others, typical others, to think. We humans are hot wired to notice difference. Deep inside our animal brain is the fight or flight response.   I get the curiosity. And here is the rub. Can curious people think a bit before they speak? We people with an atypical body have not been put on the earth to inspire you (more sarcasm). We are under no obligation to answer rude and intrusive questions. For example, please do not ask me if I can have sex. Do not comment on how weird body is. Here is a good rule of thumb. Think about what you are asking. Would you ask a complete stranger with a typical body the same question? The answer is most likely no. Think about this. Then think about the utter lack of respect you have displayed. Curiosity is fine. If you have a good question ask it. Good questions are based on reason and relevance. Idle curiosity is unacceptable.