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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.

Sunday, September 7, 2014


New Mobility has a story about my background and career as a scholar particularly as it relates to the lack of wheelchair access at academic conferences. Here is the link: Mark Boatman did a good job writing this story up. The best part of the article was a great photograph of me leading a zombie roll/walk at Syracuse University last April for a conference "Cripping the Con". I gave the keynote talk about the Walking Dead and Assisted Suicide. I had great fun that day and it was without question the met accessible academic conference I ever had the pleasure to attend and participate in.

Tuesday, August 26, 2014

The Inherent and Invisible Beauty and Satisfaction of the Atypical Body

My body is well outside the norm. I have a profound scoleosis. As I age my fused spine is cork screwing to the right. My left hip is dislocated and as a result my left leg is shorter than the right. I have surgical scars from the base of my spine to my neck. I have a large nasty scar from a wound on my right hip that is a visceral reminder to carefully watch my skin. I could go on but you get the point--I am far from the norm. I really like my body. It is well worn and has served me well. I wish others saw what I see. A useful body, a rugged well used body that has endured and thrived. Instead, health care professionals see pathology first and foremost. I am a problem, the symbolic representation that there are limits to what medical technology can do. They see a patient that is complex and different. A patient that will consume too much of their valuable time. This came to mind today as I need to find an internist in the Syracuse area. With a working cell phone I made dozens of calls this morning. I contacted 20 different internists--not one physician would take me on as a patient. The reasons varied.

"The office is not wheelchair accessible".
"Dr. So and So does not accept patients who are paralyzed. You need to see a specialist".
"We do not have an accessible exam table".
"We do not take your insurance carrier".
"Dr So and So is not accepting new patients. The office cannot recommend another physician ".

I hit a brick wall and spent lots of time on hold. I was at first amused by the phone trees I encountered. In recording after recording I heard "If you are experiencing a life threatening medical condition hang up the phone and dial 911". Within 90 minutes the proverbial light bulb went off--cold calling an internists office was a waste of time. Instead I called a patient advocates office. The first words were "We have a doctor shortage in the area. Your insurance is not comprehensive and with your disability it will be a challenge to find an internist.  Your only recourse is to find an urgent care office". I expected this. I knew I would be turned away. Part of the refusal is I am a stranger. I am not hooked into the health care industry in the Syracuse area. Yet for much of my life I have been refused as a patient. In fact the only way to get my foot in the door of an internist or specialist is to have a doctor I already know call the office for me and set up an appointment.  This call is not about my medical care. It is to legitimize my existence. The sad fact is well over 20% of people with a disability are turned away from doctor offices. A female physician based in the Boston area whose name I forget has documented this in various academic journals. This is important work.

What people default to when they encounter a person with a disability is simple: disability is bad. Disability is complicated. People with a disability are continually and chronically ill. What typical others think about is what I cannot do. This has not changed in the last 35 years.  I cannot walk. Oh the horror! Believe me, the inability to walk is not a priority or blip on my screen. Walking is not in any way relevant to my life. Here is the rub. When I see a person with a disability I wonder what can the person do. The disability means nothing. I instantly dismiss what cannot be done. I imagine what is possible. Do this and a world opens up. Hence when I see a quadriplegic I wonder about quad grips for exercise and think damn that power chair can go fast.  I do not see pathology or limits. I see adaptation in its finest form. I see creativity. I also often see lots of duct tape. Real hard ass cripples are devotees of duct tape.

My good friend Steve Kuusisto wrote a great blog post today entitled "Dawkins We Hardly Knew Ye". Link: Like me, Kuusisto was disillusioned by Richard Dawkins Tweet and subsequent non apology for suggesting it was amoral to not terminate a pregnancy knowing the fetus had Down Syndrome.  I urge readers to read what Kuusisto wrote. His post is thought provoking, compelling, and insightful. One line though stuck out for me.

As a person with a disability I know physically deviant life is precious, fascinating, and entirely indescribable by conventional habits of thought.

 This line deeply resonated with me. I was up early this morning--that is my norm. I rise with or just before the sun comes up. I showered and something ordinary turned out to be a remarkable experience. It was really mundane. I transferred from the tub to my wheelchair. The transfer, one of thousands I have made over the years, was a work of beauty. All the parts of my body cooperated. My thrust up was powerful and swift. My leg spasms released at the perfect moment. I lifted my torso up high and softly but with enough authority. I landed in my wheelchair in absolute perfection.  Physical and Occupational therapists would weep with joy if they saw this transfer. Oh, I wish I had a video of this transfer. It would be the perfect teaching tool for an upper level paraplegic. As I marveled silently in awe of what I had just done I became sad. Who could I share this magical moment with? Who would get the grace and beauty involved? What I experienced is indescribable to use Kuusisto's word.  No person without intimate knowledge of paralysis could grasp what I experienced.  I wonder when if this will ever change. As I sat on hold repeatedly, I thought more and more about the transfer from the tub to wheelchair.  Should I tell the physician office "Hey I made a gorgeous transfer today. It was a work of art. A performative act if you will". Instead I held my tongue and listened to person after person turn me way. Indescribable.

Sunday, August 24, 2014

A Brave New World

I am not a Twitter guy. Years ago I was not a blog guy. Now I am a blog guy and what Syracuse University likes to call a public intellectual. I am not sure how I feel about this moniker. I prefer Bad Cripple because I sure do seem to get people angry when I write about disability rights and especially growth attenuation, a cure for SCI, and my opposition to assisted suicide. I should also note here I do not intentionally try to make people angry. I write from the heart and in a strong manner. I know my views are not widely accepted and out of the norm. I feel a social obligation to be as forceful as possible when I write as many others share my views but cannot articulate them as I do. The point I am trying to get at is that I want to reach as many people as humanly possible. This effort is dependent upon technology and social media.  I must keep up with contemporary culture and all summer my son has been pushing me to get on Twitter. He explained not once or twice but many times why Twitter is important. I am sure he is correct. But here is the rub. I am resisting and a recent news story that broke via Twitter might finally propel me into the world of Twitter.

A few days ago Richard Dawkins got himself into hot water via a poorly worded and deeply offensive Twitter comment. Dawkins has been and remains a controversial figure. He is by degree an ethologist and evolutionary biologist. In the 1970s he wrote the Selfish Gene. More recently (2006) he wrote the God Delusion that was widely read (as in the millions of copies sold). Essentially, Dawkins likes controversy. When he speaks, or in this case Tweets, people listen.  Via Twitter a person stated:  "I honestly don't know what I would do if I were pregnant with a kid with Down Syndrome. Real ethical dilemma". Dawkins replied: "Abort it. It would be immoral to bring it into the world if you have a choice". This exchange is typical of Tweets I have read. Short, pointed and devoid of context. I am not impressed. 

I am four days behind in writing about Dawkins' Tweet. This, I suspect, in the world of Twitter is akin to a century. Aside from the fact I am busy prepping for the new semester (my first class is tomorrow) I wanted to let Dawkins Tweet rattle around in my brain. I thus followed a multitude of news stories about Dawkins Tweet. Was it offensive? You bet it was. Was it poorly worded? Absolutely.  Dawkins should be taken to task and severely chastised. To Tweet it is "immoral to bring it into the world if you have a choice" undermines the humanity of people who are not typical--in this case those with Down Syndrome. Initially, I felt bad for Dawkins as he was inundated with hate email. I get my fair share of hate email and as the years have gone by become increasingly quick with the delete button. I do read a good bit of severely critical and hate laden email. I do this because I think such emails can reflect the larger cultural norms. There is no question my views on disability rights are not shared by the majority. I suggest Dawkins might want to adopt a similar strategy.  He posted what was, I think, supposed to be an apology. It was not, it was a an academic ego run amuck. Link: 

In "Abortion & Down Syndrome: An Apology for Letting Slip the Dogs of Twitterwar" Dawkins noted that: 

 a woman on Twitter, one of our respected regulars on, said she would be unsure what to do if she found a fetus she was carrying had Down Syndrome. I replied to her, beginning my reply with @ which – or so I thought (I’m told Twitter’s policy on this might recently have changed) – meant it would not go to all my million followers but only to the minority of people who follow both her and me. That was my intention. However, it doesn’t stop people who go out of their way to find such tweets, even if they don’t automatically pop up on their Twitter feeds. Many did so, and the whole affair blew up into the feeding frenzy 

Dawkins intension are not relevant. What one writes in an email or on Twitter is about as private as a post card. More to the point, I do not care about the intent of what Dawkins wrote.  He generated a feeding frenzy because what he wrote is deeply objectionable to many--myself included.  Worse, in his supposed apology he wrote that "given more than 140 characters he would gave written to the woman:" 

“Obviously the choice would be yours. For what it’s worth, my own choice would be to abort the Down fetus and, assuming you want a baby at all, try again. Given a free choice of having an early abortion or deliberately bringing a Down child into the world, I think the moral and sensible choice would be to abort. And, indeed, that is what the great majority of women, in America and especially in Europe, actually do.  I personally would go further and say that, if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare. I agree that that personal opinion is contentious and needs to be argued further, possibly to be withdrawn. In any case, you would probably be condemning yourself as a mother (or yourselves as a couple) to a lifetime of caring for an adult with the needs of a child. Your child would probably have a short life expectancy but, if she did outlive you, you would have the worry of who would care for her after you are gone. No wonder most people choose abortion when offered the choice. Having said that, the choice would be entirely yours and I would never dream of trying to impose my views on you or anyone else.”

The above is far worse than the original Tweet. Yes, most women when confronted with a choice do indeed choose to terminate the pregnancy when they  receive a positive test for Down Syndrome. What few discuss however is do women really have a choice when they elect to have prenatal testing done? When does choice, in this case a positve test for Down Syndrome, become a social expectation? When does choice become a demand or preconceived conclusion? Worse, Dawkins supposed apology highlights the stunning ignorance about what it is like to parent a child and adult who has Down Syndrome. People with a host of significant cognitive disabilities are not only deeply loved as a typical human beings are but make contributions in a myriad of non traditional ways. The same can be said of people with physical disabilities--people like me. The root cause of the discrimination those with a physical or cognitive disability experience are shared.  In a short essay I wrote in 2010 about the Ashley Treatment I argued that people with a disability: 

are the Other, a pervasive and important concept in the social sciences. The Other are strangers, outcasts if you will, people who do not belong. The Other often have fewer civil rights and experience gross violation of those rights.
Thus at a fundamental level there is an us-and-them – those with a disability and those without. This is a false dichotomy, but is a part of the American social structure and dare I say medical establishment. The degree of disability is not important, nor is the type of disability. We people with a perceived disability are the other.
Given this, I do not consider myself one iota different from Ashley, in spite of the great difference in our cognitive ability. In developing the Ashley treatment,doctors have not only overreached the bounds of ethics in medicine but also sent a shot across the bow of every disabled person in American society.
The message is very clear: disabled people are not human – they are profoundly flawed beings, and extreme measures will be taken to transform their bodies. Consent is not necessary. Modern science has come to the rescue, and doctors have the technology to save us. The problem with this line of thinking is that it is inherently dehumanizing. Ashley did not need to be saved. Link:

The fact is not only are people with a disability subjected to baseless prejudice, but the mere right to exist as a human being is being subjected to a frightening modern day form of Eugenics. I am sure this statement will outrage some bioethicists, physicians and health care providers. I would urge those shocked by words or deeply insulted  by my use of the word Eugenics to think more deeply.  Please stop and read the words by Dawkins. A mother who gives birth to a child with Down Syndrome is "condemned" to a lifetime of caring.  Read this repeatedly. Think about the implications and consider this. My parents were told when I was a morbidly sick child that the odds of me surviving to adulthood were slim. I would most likely have profound and life long physical deficits. I would require great care and that care would be a significant financial drain. But the choice to treat me was up to them. I could be made comfortable. They could try and have more children--children that would not be a burden. Has much changed in my life time? In a word, no. In 2010 I was critically ill and a hospitalist suggested my life was not worth living and that he/she could make me comfortable. In other words I could choose to die. After all life with a disability is filled with misery and pain. 

People do not make life and death decisions in a social vacuum. We are part of a much larger social system. Dawkins words merely supports existing ideology. That ideology works at multiple levels and that includes institutions like hospitals and health care offices. The normative ideology that Dawkins supports leads to the consent for oppression (in this case the termination for all fetus' that test positive for Down Syndrome). This in turn creates a belief system in which the termination of a any pregnancy in which a physical or cognitive disability is present is perceived to the only logical and moral choice. This has a a direct impact on individuals that leads to alienation of those few that are born or acquire a disability. The end result is that stigma, social isolation, economic deprivation, and a lack of social supports are the norm. People with a disability are marginalized others.  

Let me return to Dawkins. He ended his non apology with the following words: 

To conclude, what I was saying simply follows logically from the ordinary pro-choice stance that most us, I presume, espouse. My phraseology may have been tactlessly vulnerable to misunderstanding, but I can’t help feeling that at least half the problem lies in a wanton eagerness to misunderstand.

I do not possess a wanton eagerness to misunderstand. Rather I have a wanton eagerness to shed light on what others, typical others, do not get when life involves living with an atypical body. I want to make sense of the stigma I encounter daily. I want to make sense of why people feel free to consider my body to be public property. I want to know why people are not bothered when I am harassed by those who work for the mass transportation industry. I want to know why people with a disability are unemployed in great numbers. I want to know why social supports for those with profound cognitive deficits or mental illness are substandard at best. The answer to these questions is not to be found in preventing people with a disability from existing.  The answer is all around us. It is questioning why others, atypical others, face prejudice every time they leave their home. The prejudice I encounter as do all people with a disability is called ableism. This is a word I hope Dawkins will take the time to look up for his apology is really a simple statement in support of ableist ideology that I oppose day in and a day out. 

Thursday, August 21, 2014

Day 21 in Central New York

I have moved to a very pretty small town in Central New York that I prefer to remain nameless.  The town has one main drag that runs from a gorgeous lake for about 10 blocks. The word picturesque comes to mind.  I am very lucky as I am a few miles from town and right on the lake. Better yet, I am on the quiet end of the lake. I am happy and getting much stronger physically. My home is on a very steep hill and I am developing more functional strength in terms of wheelchair pushing power. There is a flat area outside my door and the view from my living is mind boggling. While I am pleased with my living situation. I am also a bit taken aback.

The gorgeous town I live in is grossly inaccessible. I have been to may such inaccessible towns. They dot the landscape of America from coast to coast. I have driven to all the small neighboring towns within a 30 minute drive of my home. Few are as pretty as the town I live in. All are far more accessible. I suspect there is great wealth in my little town. Some homes are nothing short of show case properties. On a regular basis I pass cars that are very costly. I have read a bit about the history of the town and suspect that there is much old money. I have learned so called old money does not like change. Change meaning the historical nature of the town is sacrosanct. Ramps, curb cuts, and wheelchair access would mar the historical element the town is known for. I have heard this line of reasoning for decades. I call it snooty reasoning. Wheelchair access need not mar the historic buildings the people who live in town fiercely protect and are proud of. This is an argument I have entered into many times and it is a red herring. The argument is lost once you engage in a  discussion of historic preservation. The all important subtext is the firm belief that wheelchair access is a choice; a matter of charity in fact. This is wrong. The fact is wheelchair access is a matter of civil rights.  Few people get this critically important fact. The ADA, now almost 25 year old, is civil rights legislation. It is enforced by the Department of Justice. The town I live appears to me to be a perfect example of how the ADA has failed to resonate culturally. People do not value wheelchair access nor the existence of people with a disability. Access is not a priority and instead a nuisance. Access is in fact a threat to the town. How dare I bite the hand that feeds me. The town can pick and choose what is and is not accessible. Of course the fact they know nothing about disability is not considered. Slap a few blue wheelchair logos all over town, provide handicapped parking and the problem is solved.

As I write these words, I am in the public library. It is a nice building. It has what I call fake or old people access. There is a small parking area near the front door. There is one handicapped parking spot and two 15 minutes spot. I have walked past this little lot off the main drag and have never seen an open spot to park. There is additional parking in the rear of the building. It is a gravel lot that surely does not comply to the ADA. Parking in the back requires one to essentially circle the entire building to get to the front door. The path is wide but uphill. The town is responsible for the lot and plowing. The library is responsible for shoveling the walk way. The odds snow removal are coordinated is nil and we are smack dab in the middle of the snow belt. Getting in the door of the library in the depths of winter will be a challenge in the extreme. As I got my brand new bright yellow library card I noted that access from the back is far less than ideal. I noted the parking lot is not compliant with the ADA even though the lot was built four years after the law was passed. This observation was quickly met with: "That is something you need to take up with the town. We are not responsible".  Not exactly a helpful comment.

Here is my dilemma. I am a new to town. I am in the library to learn about the history of the town. I have zero clout. I am an outsider.  What gets me is there are little blue wheelchair logos all over the library. leo present are multiple violations of the ADA. But hey those blue wheelchair logos make the bipedal hordes feel good.  At the library there are two sets of electric doors. Two very expensive doors. As I enter, there is a library cart filled with books that blocks easy access to the door open button. The desk area that is lower at the check out counter is filled with folders and news about upcoming activities. After noting the lack of wheelchair access and the fact the parking lot is not ADA compliant I have pushed my luck. The big welcoming grins I got upon entry I know will turn to cold stares if I ask anything more about wheelchair access. Clearly I am a problem the librarians do not want to deal with. They are all polite, a trait to central New York that will take some time to get accustom to. Behind these smiles however is an eagerness to explain why there is no appropriate access to 90% of the buildings in the town I now live in (the 90% estimate is generous). The lack of access I am told is a very long story. Sorry but no. I do not care about the story that explains why there is strong resistance to make the town accessible. Other local towns I have visited at least try. There is no effort in this town. There is an animosity I feel to wheelchair access.

I must note I have been a resident a grand total of 21 days. Who knows, I could be wildly wrong. Now if I had a cell phone that worked in my home I might actually be able to investigate and advocate for change. I expect my cell phone problems to be solved shortly. What I do not expect is progress in my town.  For real progress to be made a fight must ensue. This fight would be two pronged--legal and cultural. Without a forceful push for access nothing will change. Not sure if I have the stomach for this, the knowledge base, and certainly not community support. For now I am going to work on my knowledge base. Time to brush up on my local history.

Thursday, August 7, 2014

Disability: A Cure for Developing a Big Ego

I am a bit more settled in. I can get to the grocery store without the GPS directing me. I know great places for Kate and I to walk. I am figuring out bike paths. Why I even found a great hot dog lady in a nearby town. More importantly I am putting the finishing touches on my classes. I am eager to teach my graduate class in bioethics and disability.  I look forward to getting back to the honors department this semester. In short, a new routine is being established. I was feeling pretty good about life until yesterday. At a local strip mall in Syracuse I was doing some shopping. I made several trips in and out of various stores. Shoot, I even found a spot in handicapped parking. My head is swimming and I am following a long list to the letter. On one of my forays I noted a group from what I assumed was the local group had parked near the entrance to Wegmans (a great supermarket chain). There were about 8-10 adults with a dizzy array of visible disabilities outside the store entrance. I was pleased to see this group out and about. No doubt the logistics involved in such a trip are daunting. I was not really paying much attention to them. I was far more concerned with not getting hit by a car in the parking lot. I head in the direction of Wegmans where the residents of the group home were gathered in a small huddle. Suddenly I feel a person grab the back of my wheelchair with authority and yank my wheelchair in the direction of the group home residents. This is not easy to do as I have no handles on my wheelchair so people do not do what this person has done. At the same time I am scolded "How dare you leave the group. You could be hurt. You know better. I am taking you back to the others and do not move". The tone of this woman's voice is nasty--think drill sergeant like. She has what she thinks is a command presence. This might work in the military and in Catholic school but not among the public. As we are traveling to the right I take my fore arm and with significant force bash my forearm against her arm. She instantly let go of the wheelchair and I spun around obviously angry. She was shocked but not hurt (I could never harm another human being). A very unpleasant though brief conversation ensued. She was not impressed with me. I was deemed rude and nasty. She told me she made an honest mistake. I was deemed over sensitive if not hysterical. The tone of her voice remained dominant as did her body language. Her apology was not sincere. She was deeply annoyed with me. I was essentially an  uppity cripple. How dare I assert myself. How dare I assert the fact I am an autonomous being. How dare I be human!

The above incident was unusual. It took place in Syracuse where there appears to be a small but notable number of people with a disability. Syracuse University is also well known for its championship of disability rights. I remain upset about what took place. It was not the rude behavior of the woman in question. It was not the assumption she made that all people live or are part of a group home. All of these are objectionable. What bothered me was the extreme authority she freely wielded. If she treated me in this manner how did she treat the residents of the group home? Not well I assume.  This is not acceptable and it kept me up much of the night. Exactly why do people with a disability routinely get treated like shit? Why do the hordes of bipedal people assume my life and the lives of all people with a disability lack value? Worse why is such a discriminatory person working in a group home? Yes, I had good reason to toss and turn last night.