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Tuesday, October 21, 2014

Airline Travel Wildly Inconsistent

I flew from John F. Kennedy airport to San Diego to attend the American Society of Bioethics and Humanities annual meeting. My experience, as always, was a mixed bag of negativity. I love to travel but despise airlines in particular and mass transportation in general. I get that all people are treated poorly by the airlines. Airlines are akin to very expensive and technologically advanced busses in terms of how they operate. I understand every inch on an airplane must generate revenue. After almost 40 years of traveling via wheelchair there is no doubt the airlines think I represent extra and unwanted labor. I am not a typical customer but rather an expensive and unwanted drain on man power. I also know my wheelchair takes up valuable space in a cargo hold. I could go on but you get the point--the presence of anyone that uses a wheelchair limits profit. With profit margins razor thin, I realize why an ingrained anti-disability framework exists in the airline industry. This is not uncommon. Other industries are hostile to disability foremost among them the health care industry. I never expect to have a positive experience when I fly. In the post 9/11 era I have a 500 to 750 mile rule. Any destination I desire must be in excessive of the aforementioned miles for me to get on a plane. The hassle is just not worth it. The stress I feel when flying is exceedingly high. Will I be injured by airline personnel who have little or no training? Will my wheelchair be damaged or lost? Will I be stranded for hours waiting for help? Can I tolerate the people I will be forced to interact with?

My thoughts were dominated by the above questions flying home from San Diego on the red eye. I left San Diego at 9PM and landed at JFK at 5AM. I do not ever sleep on air planes. I spent the night reading and lifting off my skin every ten minutes for the entire night.  How I wondered could flying be made easier for people that use a wheelchair? As of today, flying is routinely miserable. I always assume the worst. Airline personnel will be rude, uncooperative if not down right hostile. I assume TSA agents will act like, slow inconsiderate drones. My fellow passengers are unsupportive and typically look away when I am treated by airline personnel as though I am sub-human.  On that long red eye flight lying home I was struck by the angst I experience. Forget the social abuse and physical barriers. What makes me crazy is the inconsistency. For instance, at JFK I got a serious pat down by the TSA. This is usually a cursory examination--more show than security. The back hands of the gloved agent touch me all over my body.  A wand is spread over my wheelchair supposedly checking for residue of explosives. An utter waste of my time but required measure of control. The TSA agent at JFK gave me a real pat down. He was very firm with his touch and on the cusp of inappropriately hard. He touched every part of my body firmly. He checked my waist band, under arms, and legs. His touch was so hard he triggered spasms and asked why I was moving. I told him the movement was involuntary response to his firm touching. The TSA agent had me lean to one side then the other. He looked under my wheelchair in detail. This is, I suppose, text book. The text here for corrections officers working in a maximum security prison. I know enough to keep my mouth shut.  Dissent and objection is a very bad idea in any airport thanks to the Patriot Act.  I have no interest in disappearing as an enemy combatant. Did I object? Well, as a matter of fact I did. Upon completion I dryly noted "Thank you that was a text book pat down". He did not get it. In fact he took it as a compliment. Fast forward to my return  through the TSA. The TSA agent that patted me down never touched my body. Not once did gloved hands touch me. Perhaps I can thank Ebola for this as the vibe from this man was as though my disability was contagious. I flew through security with only a cursory glance.

I wish I could have an ordinary experience flying. I wish I could know what to expect. I wish I did not have to worry about getting injured getting to my seat. I wish the people that helped me on and off the plane were professional and not low paid and exploit employees hired by a second party responsible for assisting me. Leaving San Diego the two men tasked with assisting me did not speak a word of English. Not one word. Not seat. Not wheelchair. Not strap. Not feet. They were nice men who did want to help but the language barrier prevented basic communication. We were left to mime and point to work together. The message here is not sublet. I have no value. My life is not as important nor is my business in comparison to those that are bipedal and indecent within a very narrow range. I cannot envision this ever changing.

I cannot end on a depressing thought. Instead I will note the cross section of humanity that boarded my flight was interesting. A man four rows behind me snored loudly. Think freight train loud. This made me think of the Boy Scouts and some of the leaders whose snores were amazingly loud. What struck me though in terms of good feelings was the two young women sitting next to me. They were obviously intimate with one another. They were discrete but affectionate. They clearly had a wonderful bodily ying and yang.  Such movement is wonderful with a lover. It prompted many fond memories of my experiences with my long time ex wife when I was a young man. Better yet it made me think social progress is possible. Twenty years ago such affection between two women was not possible in public. We briefly spoke at the end of the flight about college life. I really enjoyed their company and for the first time in my life my fellow passengers offered a measure of support. I had explained I would be the very last person off the flight. They appeared shocked. They wondered why was I not the first person off the plane. I briefly told them about how terrible the airlines and how many law suits take place per year. After a short silence they each asked if they could wait with me or  help in any way. Wow, these young women got it. The way I am treated is wrong. They made that leap in logic in mere seconds.  Maybe there is hope after all.

Saturday, October 11, 2014

The Latest Photogenic Face of Assisted Suicide

Art Caplan is a big man with charisma. The mainstream media considers him to be America's bioethicist. Caplan is more than willing to pontificate on any and all subjects related to health care. I cringe inwardly when I see his name in the news. Hence it was with great trepidation that I read his views on Brittany Maynard. Maynard's story has gone viral. I assume most people have read about Maynard but I will briefly mention the highlights. Maynard is 29 years old. She is an attractive woman, recently married, when she started to experience severe head aches. She was subsequently diagnosed with an aggressive and lethal type of cancer. There is no question her condition is terminal.  Her stated desire is to die with dignity. She wants to control the end of her life and like many she wants to die in her own home. This desire led her to move from California to Oregon where assisted suicide is legal. She plans to kill herself on November 1. Over the last few decades people have made similar claims. Most people who make such proclamations do not follow through with their desire to commit suicide.

Two things make Maynard different. First, for people such as myself opposed to assisted suicide she is in Caplan's words "the new, self-proclaimed face for the right to die". Caplan goes on to note that Maynard "is partnering with  the old warhorse non profit Compassion and Choices". Maynard is the perfect choice for Compassion and Choices to partner with to use Caplan word. I would sourly note she is the perfect person for Compassion and Choices to exploit. Second, Maynard is not different from myself and many others I know who are opposed to assisted suicide. I am what Syracuse University likes to call a public intellectual. I am also an activist in the sense I am on the board of Not Dead Yet, a grass roots organization that vigorously opposes assisted suicide. Thus Maynard and I share one thing in common--we are both activists but on the opposite side of the fence. What makes Maynard different is the slick packaging of her life into a tear jerker like framework. She is unquestionably picture perfect for Compassion and Choices. The emotional manipulation via imagery involved is over the top.  It is a dodge, a shell game. Replace fact with emotion. Maynard's role is to incite sympathy without thought.




What could be a worse tragedy? A slender young woman in a gorgeous wedding dress holding hands with her dashing husband. But this is not enough. Yes there is more! We also get to see her with a broad smile sitting in a comfortable chair holding a puppy. Not just any puppy but what looks to be a labrador retriever--the most popular dog in America. The not so subtle leap of logic is that she will never conceive or give birth to a child. This sort of imagery is designed to do one thing: prompt tears over the tragic life and near death of a young woman. One feels sad for her husband and family--and believe me I truly do feel sad for her family. I also feel angry. I am not angry with Maynard. What bothers me is the knee jerk reaction and out pouring of pity. She has complete and total support via superficial outlets such as People magazine and just about every television talk show and news program. Maynard has created the perfect media firestorm. The fact she has not added anything new to the debate for or against assisted suicide does not mater. The viral nature of her story is perfect for contemporary news cycles. Her story over the next few weeks will reach a fever pitch with a perfect ending. Her death. Should she choose not to commit suicide she will slip into oblivion--her proverbial 15 minutes of fame used up.  I wish I could say I am surprised by how positive the reaction has been to Maynard. She is ever so brave! Sorry but I do not think so. I think she is blatantly trying to push legislators to pass legislation now. How exactly can you say no to this woman if you are a politician and plan on getting re-elected?

Six million people have seen the below video. The comments have thankfully been disabled.


Aside from being manipulative, I cannot helped but be struck by the privilege involved. Maynard has a wander lust for travel. With a dreadful sound track she said she and her husband were actively trying to conceive a child. She has a wanderlust for travel says her mother. She vacationed in the wine country. She went to Yellowstone with a friend. She went to Denali National Park and met her mother in Juneau. She hopes to go to the Grand Canyon. I am glad Maynard was able to make all these trips and hope she gets to see the Grand Canyon. I wonder though how many other people with terminal illnesses have a comparable experience? I would suggest the majority of people with a terminal illness spend a lot of time on hold arguing about what treatments are or are not covered. I know I sure as heck have had to fight long and hard with insurance companies over my health care.

To reiterate: no new ground is being broken by Maynard. What is different is the timing and imagery that make her story impossible to ignore. Many tears will be shed in an effort to quickly push through  assisted suicide legislation. Who wants to have a serious debate about end of life after having their heart broken? We do not need thought we need action and we need action now! Maynard is sure to remain in the news for the rest of October. If she does indeed commit suicide the story will continue for a finite period of time but not interfere with Thanksgiving day football games. Her funeral will no doubt provide equally emotional visuals. I am not thrilled to pen these words--they are hard in the extreme. I am sure she believes the passage of assisted suicide legislation will give her short life meaning.  I understand this sort of reasoning. While I am not dying, I get tremendous satisfaction advocating for other people with a disability. Lost in the sea of raw emotion is the simple fact there must be a counter point. For me that counter point is the unwillingness to consider even the most ill or most disabled lives have value. Maynard is unwilling to explore a different, albeit very short, life experience.

In the video above, Maynard's mother stresses how she wants her daughter to be autonomous. Autonomy here is very narrowly defined--a typical life. The typicality requires an average life expectancy, happy marriage, kids, employment, and travel. I have enjoyed many of these wonderful aspects of life. Raising my son and watching him turn into an adult has been and remains the best part of my life. I too have traveled extensively. I have done all this with an atypical body. Never as a young boy could I have imagined life as a paralyzed man. But paralyzed I am. I have led a good life knowing my mere presence was too often unwanted and onerous to others. I have encountered barrier after barrier both physical and social. The world is not designed for people like me. The point is Maynard and others who support assisted suicide cannot imagine the life I have led and enjoyed. The lack of imagination on the part of others when they see me deeply bothers me. I know what most people think: paralysis is bad. Using a wheelchair is a fate worse than death. Terminally ill people that want to die are brave souls! People with a disability that want too die are brave too. I could never live that sort of life. This emotional reasoning is devoid of logic and the ability to adapt is wildly wrong. It is living that counts. All humans are intrinsically valuable--that includes Maynard, myself, people who are terminally ill, elderly and disabled. In short I reject the romance Maynard has with dying. I rail against a society that applauds people like Maynard who want to die and at the same time undermine the ability of those that need social supports to live a good life.  What Maynard is turning her back on is the interconnectedness of all people. A good death need not involve a lethal prescription and advocacy for "an old war horse" like Compassion and Choices. A good death can be achieved in a multitude of ways. I can say the same thing about life. There many paths our lives can take and I for one find it sad Maynard has knowingly allowed herself to become the face of the so called right to die.  I would rather be known for how I live not the way I died.

Tuesday, October 7, 2014

Terminal Normativity Displayed by Ezekial Emanuel

Last month the Atlantic published an article by Ezekiel Emanuel. Aside from the provocative title, “Why I Hope to Die at 75", there is nothing original or particularly insightful in the article. Link: http://www.geripal.org/2014/09/hey-dr-emanuel-you-might-not-want-to.html Emanuel wants to die at 75 for reasons that highlight a life of privilege. I have no idea why he wrote this essay. Perhaps he shares the views of his brother Rahm Emanuel, former White Chief of Staff, who in 2010 caused a controversy by referring to liberals as “fucking retarded”. What is very clear is that Emanuel cannot perceive life in a different body. Specifically a body that is not fit, white, and male. Emanuel believes as we age our bodies and mind deteriorate. He does not advocate for assisted suicide. He simply has no interest in living beyond 75 years of age. He considers his life complete at 75. His family thinks his desire to die at 75 is crazy. I disagree. He is not crazy. Rather he is a narrow minded bioethicist utterly incapable of creativity and imagination. He is a privileged white male that cannot imagine life without a body that functions typically. Emanuel is very sure about his position. Emanuel’s certainty reveals why I am ill at ease with the field of bioethics. The atypical body is not respected. Normativity rules the discipline. The thought we live in an ableist society is noted and summarily dismissed. Among the most objectionable passages the below took me aback:

 "But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic."

Clearly disability is bad. I am surprised to learn I am not creative. I am surprised to learn I cannot contribute at work or to society. I am surprised to learn my life has been devoid of vibrancy. I am surprised to learn my life has been one of deprivation. A few things do not surprise me. I am not surprised to a well-known bioethicist has such an overwhelmingly negative view of life with a disability and the aging process. I am not surprised that my life as a man with disability may or may not be worse than death. I am not surprised by the anti disability and ableist rhetoric. I am not surprised I am treated differently as a man with a disability. I know this because people, generally strangers, tell me they would rather be dead than use a wheelchair. 

For Emanuel, there is only one way of living, that is a life with typical physical ability and typical cognitive functioning. I would fail the test for fitness Emanuel refers to conducted by Eileen Crimmins. An assessment of physical functioning includes the ability to walk ¼ of a mile. I fail. Climb ten stairs. I fail. Stand or sit for two hours. Half a failure. Stand up. I fail. Bend and here I assume being bipedal is required. I fail. Kneel with out special equipment. I fail.  My failure is physical. Society’s failure is how disability is framed. Simply put, society demands normalcy. I reject this via a life time of adapting to a body that is atypical. Each and every physical deficit described by Emanuel as fit can easily be adapted to and, for lack of a better word, overcome.

Aging and disability are terrible. Emauel described his father in the following paragraph.

About a decade ago, just shy of his 77th birthday, he began having pain in his abdomen. Like every good doctor, he kept denying that it was anything important. But after three weeks with no improvement, he was persuaded to see his physician. He had in fact had a heart attack, which led to a cardiac catheterization and ultimately a bypass. Since then, he has not been the same. Once the prototype of a hyperactive Emanuel, suddenly his walking, his talking, his humor got slower. Today he can swim, read the newspaper, needle his kids on the phone, and still live with my mother in their own house. But everything seems sluggish. Although he didn’t die from the heart attack, no one would say he is living a vibrant life. When he discussed it with me, my father said, “I have slowed down tremendously. That is a fact. I no longer make rounds at the hospital or teach.” Despite this, he also said he was happy.

I shudder to think of how Emanuel would describe me. His father and I are delusional. Amazing. How can a man so well educated utterly fail to grasp that elderly and disabled people are happy with life? Does being sluggish or slow really matter? To a degree the answer is yes in terms of time. It takes me longer to perform typical activities—my activities of daily living in rehab speak. So what. Let’s think out of the box for a second. Could my life or that of an elderly person be brought up to speed. You bet! How about personal and family support networks? How about community supports? All have been demonstrated to enhance the life of elderly and disabled people. The problem is not with the body but the lack of a socially constructed environment that is accessible to people that use adaptive technology such as wheelchairs. The elderly Emauel states “are likely to be more incapacitated. Does that sound desirable? Not to me.” Emanuel goes on to state:

Our expectations shrink. Aware of our diminishing capacities, we choose ever more restricted activities and projects, to ensure we can fulfill them. Indeed, this constriction happens almost imperceptibly. Over time, and without our conscious choice, we transform our lives. We don’t notice that we are aspiring to and doing less and less. And so we remain content, but the canvas is now tiny. The American immortal, once a vital figure in his or her profession and community, is happy to cultivate avocational interests, to take up bird watching, bicycle riding, pottery, and the like. And then, as walking becomes harder and the pain of arthritis limits the fingers’ mobility, life comes to center around sitting in the den reading or listening to books on tape and doing crossword puzzles.

Emanuel cannot imagine bodily difference.  He observes diminishing capacities.  Like many, he observes what people cannot do. In contrast, I see a world of possibilities and the ability of the human body to adapt. I value the interconnectedness that disability in the broadest sense of the term creates and makes obvious. I value the elderly and their “sluggish” bodies. I admire a myriad of adaptive devices that empower people. I admire the wild creativity of the other--in this case those who are elderly or disabled or both. Toward the end of the article Emanuel suggests his views will be condemned.  In an effort to be clear he states:

I am not saying that those who want to live as long as possible are unethical or wrong. I am certainly not scorning or dismissing people who want to live on despite their physical and mental limitations. I’m not even trying to convince anyone I’m right. Indeed, I often advise people in this age group on how to get the best medical care available in the United States for their ailments. That is their choice, and I want to support them.
And I am not advocating 75 as the official statistic of a complete, good life in order to save resources, ration health care, or address public-policy issues arising from the increases in life expectancy. What I am trying to do is delineate my views for a good life and make my friends and others think about how they want to live as they grow older. I want them to think of an alternative to succumbing to that slow constriction of activities and aspirations imperceptibly imposed by aging.

Emanuel ignores the power of his words. We do not live in a social vacuum nor is our decision making process free of outside influences. Emanuel is correct in that no one openly scorns a person like me or an elderly person. Instead we kill them with kindness and maintain their life on the precipice of disaster. As Mary Johnson wrote in Make Them Go Away: Clint Eastwood, Christopher Reeve, & the Case Against Disability Rights, no one wakes up thinking I am going to discriminate against the disabled. We good hearted people and care about the handicapped and elderly! Sorry but no.  Society does not value our existence.  The backlash I experience when I assert my civil rights or when people who are elderly demand to be treated equally is about fear. Emanuel’s article to me is about fear as well. People fear aging and the end of life. In response to that fear end of life has morphed into a right to die. This is what happens when the normate to use Rose Marie Garland Thomsen’s awkward word, dictate and set the terms of the debate about aging and disability.  Disability becomes the ultimate fear—a fate worse than death. Based on my life as a paralyzed man for the last 38 years I can assure others there is nothing to fear. Disability is not necessarily bad and aging is merely a biological inevitability.  All who are born will die. This is a given. It is the way we adapt to life that is most important. All people when given the chance have something to contribute.

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: http://starinhereye.wordpress.com/2014/09/27/encounters-with-strangers/ 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

Famous?

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: http://www.newmobility.com/2014/09/william-peace/ 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: http://www.stephenkuusisto.com/uncategorized/dawkins-we-hardly-knew-ye 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.