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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.

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: https://richarddawkins.net/2014/08/abortion-down-syndrome-an-apology-for-letting-slip-the-dogs-of-twitterwar/ 

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 RichardDawkins.net, 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: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4742&blogid=140

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.

Tuesday, August 5, 2014

I am Distressed

My beloved lab kate is nervous and distressed. She knows major changes are afoot. Boxes abound and furniture and rugs disappear by the day.  While I am not distressed by my move I am nonetheless feeling distressed today for two good reasons. First I read Steve Kuusisto post at Planet of the Blind. As Heather Kirn Lanier noted the post is so good it hurts to read. I would concur with this assessment and would add in a healthy dose of searing.  Here is what Kuusisto wrote today in full: 

I am distressed. Blindness isn’t merely a lack of vision–its a fight or flee carnival, sequential, unpredictable, sometimes rather frightening. And even the small things, paying cash in the market, become tangled as my cash falls to the floor and I fumble publicly down where all the shoes have trod, the impatient shoppers behind me, no one offering to help, and my skin undergoes electrolysis and groping I feel I could weep. I know I’m not supposed to say this. The core of speech is reserved for nuanced politics. One is supposed to say disability is merely a nuisance. That’s the politically correct thing. I’m just like everyone else but with a few added musical notes. But this is of course ridiculous when you’re down on the public floor scrambling after two dropped quarters. I escape with my groceries. Walk in the sunshine. “The day will get better,” I say to no one in particular.
But its fight or flee–all day; a fairground of anxieties. Crossing streets. Getting to the other side safely. Getting there with your dignity. The dog helps. Squaring your shoulders helps. But then the next place you go has a revolving door. You can’t get in. When you tell the management they need a “disability friendly” door they tell you with their Rococo eye rolling, they don’t care. “Go away,” they say, though they don’t really say it; but they do. You continue on the street of public life. You shamble among the rags and masks of the ordinary people. Everyone looks at you. You’re a half vagrant out in public blind person. You’re wearing your good suit with the purple tie. You’re walking around with rain in your heart.
 Strangers ask how much you can see. You make jokes. “You look like Ingrid Bergman; Cary Grant.” Young people don’t know who they are. It doesn’t matter.
The books I downloaded this morning from Amazon aren’t accessible. I wasted my money.
After many languages I’m still an orphan.
I live in an American city without good public transportation. I must rely on taxicabs more than I wish. The drivers are desperate people. They talk about desperate matters with broken words. Most of them listen to “hate radio” and I smile from the back seat under my big sunglasses.
Do you see? What do you see? I’m waiting for happiness to slowly crawl in…
Link: http://www.stephenkuusisto.com/uncategorized/disability-and-the-star-in-my-head
To borrow Kuusisto's words it is hard "waiting for happiness to slowly crawl in" to the hearts of so many people with a disability. I started my day wondering is happiness even possible? I loved the poetic idea of rain in one's heart. A water laden heart is heavy and tired. I so get what Kuusisto is eloquently writing about. Nothing is easy for people with a disability.  The grocery store is always an adventure. Anonymity impossible. Why just today I was lauded for my "inspiring" ability to carry two plastic bags to my car. Mass transportation is always an adventure. Flying on a plane is an invitation for abuse. Accessible housing is like looking for a needle in a hay stack. The worst part of all this is that we people with a disability are expected to put a smile on our face and make those violating our civil rights feel okay. In individualizing the "problem", namely my very existence,  negates the inherent civil rights violation against a class of people. And yes people with a disability are indeed a class apart. Read the ADA--it is not about buildings and construction codes but rather civil rights legislation. I doubt less than 1% of the nation realizes this and I bet most people with no disability experience  would think equating the ADA with civil rights legislation is political correctness run amuck.
While I was distressed by Kuusisto's words, I kept thinking why. Why almost 25 years post ADA does the law not resonate? Why are people with a disability not in positions to make effective social change? Why is disability rights not taught at every school in America? I then read another blog, The Feminist Wire and a light bulb went of in my head. In "On Feeling Depleted: Naming, Confronting, and Surviving Oppression in the Academy". Here is the second reason i am distressed: this post gives a perfect discussion of why people with a disability are not scholars. Link: http://thefeministwire.com/2014/08/feeling-depleted-naming-confronting-surviving-oppression-academy/ Believe me, scholars with a disability are a rare species. I would suggest we are an endangered species. The proverbial Ivory Tower social environment does not want us to exist. We are a burden and costly one at that. We are not wanted as professors or as students. We do not learn in the prescribed typical manner. We need reasonable accommodations--in other words we make people think about difference. The people in positions of power that usually make the designs about what is or is not reasonable know nothing about disability. And my God the time it takes to make reasonable accommodations moves at a glacial pace. That means up and coming scholars with a disability progress at a glacial pace. Most give up--a reasonable response when confronted with bigotry. 
In the post at The Feminist Wire the authors compare Stuart, a well prepared doctoral student from a privileged background with a typical no disabled body with a student with a disability who is also a doctoral student.  I quote:
The academy wasn’t just built by people who look like Stuart. It was built with his body in mind. Stuart doesn’t have to worry about how he will get in/to his classrooms. He just shows up, opens the door, and walks right in. Stuart doesn’t have to make endless calls to Disability Services, Parking Services, Dean’s Offices, and the like, just to secure a disabled parking permit to be near his classroom. He doesn’t have to think about getting up that hill. About the potential un-shoveled sidewalks and streets. About the ice and slush that jam in a wheelchair’s tires.
Stuart isn’t watched or marked. He doesn’t have to hear the whispers about his use of the “Handicap” button to open doors. Doors that are too heavy for this body. He doesn’t have to carry a cooler of food and medicine to class and with him at all times to regulate his blood sugar. He doesn’t have to spend days making special food so that he’ll have enough for the school week. For class, for unexpected meetings on campus. He can spend time reading Marx for fun because his body doesn’t require the amount of work or time that this body does.
People like Stuart can glide through academia not thinking about the ways the buildings they use, the classrooms they occupy, and the events they attend exclude certain bodies. Stuart’s body doesn’t just not experience battle fatigue because of dis/ability, or race, or class, or sex, or gender; Stuart’s body doesn’t get physically fatigued. Because for him a door is not an obstacle. Finding a gender-neutral and accessible bathroom is not an obstacle. Getting to campus is not an obstacle. Leaving the house is not an obstacle. Using a computer is not an obstacle. People like Stuart are not tired of fighting because they don’t have to fight for their bodies to exist in the spaces of academia.

This is what no one that is not forced to deal with a disability wants to think about or acknowledge. Disability is a needless time sucker. Reasonable accommodates are always a hassle. Parking permits, bathrooms, accessible classrooms and the list goes on. These obstacles reveal my body is not wanted. If we desired to make the academy accessible I would not be forced to make dozens of phone calls and fight tooth and nail for an accessible bathroom on the floor I am teaching on. The above post perfectly describes the typical problems people with a disability encounter. It take an unusual person to push back and scholars are not known for pushing back. Hence most aspiring scholars give up. I get this. I almost gave up myself. I did not give up because I had parents and an established scholar like Robert Murphy at Columbia to support me. As a graduate student Murphy told me when you have a problem call me and I will call the provost. Problems got solved instantly. Not many are this fortunate. In fact I will speculate virtually no aspiring scholars today have this sort of support.  
There is a reason why there are precious few scholars exist. No one to my knowledge is addressing this problem. Hence each year I end my class with a question: Have the students ever had a paralyzed professor before? In twenty years not a single student has answered yes. The point is there is no desire to develop and foster aspiring scholars with a disability. The animosity directed to students with a disability is getting worse not better in the last 25 years. Reasonable accommodations are seen as costly and unfair to typical students. I have been told this directly by my professorial peers. So yes, I am distressed today.  I am distressed for good reason. I am not however going to give up. There is a reason I embrace the moniker Bad Cripple.

Thursday, July 31, 2014

Culture is Inscribed on the Body

When I teach my class body art and modification I repeatedly use one line: culture is inscribed on the body. I also use the simplistic but effective analogy to an American traveling abroad. When one travels abroad it is easy to pick out an American. We as a group tend be loud. We tend to be fat. We tend to think every human being on the planet speaks English. We expect to be served. Of course theses are broad generalizations. The point I am trying to get at is that for some of us culture is indeed inscribed on our body. My body is scarred. I have train tracks running up and down my back from my neck to the crack of my ass. I have a scar on the back of my hip. I have large ugly scar on the front part of my hip.  My left hip is dislocated and as result my left leg is short than my right leg. I have a severe sclerosis. I have a cracked tooth and need dental work. Let's put it this way: there is not one symmetrical part of my body. I am scarred and distorted from head to toe.

Survivors have scars. I have scars. I have a body that tells a story. It is a story of survival. I took the best and worst that modern medical care can dish out. Add in a healthy dose of aging and I am battle worn.  I look at my body and cannot help but state to a degree it  is wrecked. This does not bother me one iota. I plan to do further damage. I want my body to continue to be used and to a small degree abused. I want to get everything out of my body. When I am old I want to slide into death knowing I got every last drop of energy out of my body. I want to use my brain to the best of its ability and foster social change for all people with disability. Damn the torpedoes full speed ahead.  Live life to the fullest. Go ahead take chances. Take leaps of faith. We only get one shot at this wonderful thing called life.

Tuesday, July 29, 2014

Compassion and Choices: Oblivious, Rude or Misleading?

As I have been packing up box after box I have been thinking about a disturbing video created and widely disseminated by the pro assisted suicide group Compassion and Choices. Frankly I found the video shocking. It is a perfect representation of why I find the debate concerning assisted suicide so frustrating. For many years I have sought to find common ground between those who oppose and those that support assisted suicide legislation. I think my quest for common ground is hopeless because two well worn stereotype exist. First, there are people such as myself. I am a self righteous crippled bastard with a chip on my shoulder who denounces and attacks others who want to control the circumstances surrounding the end of their life. In particular, I want other cripples to suffer just like me and go out of my way to attack others who simply want a good death they can control. The second are the reasonable scholars and average citizens who merely want to control the end of their life. These people want to eliminate suffering for the terminally ill. Such advocates wear buttons that state "My Life, My Death, My Choice".  The idea that ending one's life is a tight and sacrosanct.

I want a nuanced debate about the end of life. I want to witness a national debate that addresses how we approach the end of life. No one wants a human being to die alone and in pain. Sadly, this happens all too often. In the ABC-CLIO Companion to the Disability Rights Movement Fred Pelka wrote disability rights advocates "insist that decisions about suicide, just like decisions about aborting  a disabled fetus, should not be made based on stereotypes about the quality of life with a disability. Rather than fight for their right to die, they instead prefer to fight for their right to live with dignity and independence".  This is exactly why I am upset about the Compassion and Choices video.  They are utterly reliant on a disability archetype: disability is bad. People with a disability live a diminished life. People with a  disability are suffering. People are dying in pain because of unbalanced bitter cripples like me. The result of this faulty line of reasoning is the below Compassion and Choices three and half minute "celebration" of the ADA.




What does Compassion and Choices do? Find the tiny minority of people with a disability who fit the stereotype described above. Compassion and Choices exploits people with a disability and when a person such as myself objects I am dismissed as a crank. The fact is we humans are very social. We live and die in a social setting. We do not die in a social vacuum. Our deaths have social meaning. We typically die in a hospital or nursing home: both are total institutions and feared. In terms of end of life care, symbolically a person with a disability represents a reminder of the frailty of life. As such, we are an affront to others without a disability. We are feared. We are an ever present reminder that disability can be acquired at any time over the life cycle. Compassion and Choices and other  advocates for assisted suicide exploit severely disabled people. The script never changes just the names. For the skeptical I suggest you read about Larry MacAfee, David Rivlin, Christina Symanski, Tim Bowers, Dan Crews, and many unknown others. The all important question to me is why. Why do people with a disability want to die? It is because those that live with a  disability are discriminated against. Yes, 24 years after the ADA was passed into law ablism is rampant. The ADA has not resonated culturally nor has it ameliorated  the grim reality of life with a disability. Most people with a disability live in or on the edge of poverty. Most are unemployed (70%) and uneducated. A shocking number of people with a disability are socially isolated in the extreme. Physical and mental abuse are rampant. As I said, life with a disability is not easy.

Sara Myers and Dustin Hankinson are new. The names change but not the methods utilized by Compassion and Choices. How others fail to get this is a mystery to me. When I see a person with a disability or an elderly person with significant physical or cognitive deficits I think they are hard asses. Those people have a strong will. Life was likely not easy but they endured and I hope thrived.  I imagine what their life is like. How did they adapt and what can they do? I only consider what people are they capable of doing and dismiss what cannot be done.

To end, as I move around my home I have found myself thinking about the buttons worn by assisted suicide advocates are ironic: "My Life, My Death, My Choice".  My, my, my in triplicate. The word narcissistic springs to mind. Could it be people are that selfish? Could people desire autonomy and control that much? "Mine Mine Mine", the childhood refrain, has been repackaged by adults who are afraid of disability and death. I hope I am wrong for I believe all human beings lives have value. All people have the right to live. That includes a baby taking his or her first breath to the elderly person taking their last breath. Death is not a right it is physical inevitability. It is life that holds meaning.