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Friday, November 4, 2016

An Addendum: Ignorance and Presumption of Incompetence

In my last post I wrote about being harassed by inner city youth. Such harassment is not restricted to the young. I suspect the young men that harassed me saw an easy mark. This makes them like most people who see disability as a problem. For most typical others, all they see is a wheelchair. I am wheelchair man and thanks to the new blue wheelchair logo I am wheelchair action man. However the new logo has not changed the assumption that  life using a wheelchair is inherently less and sub-standard. I am now and forever in dire need of help. The fact I do not need help doing the ordinary never crosses people's minds. Like it or not, social boundaries are absent and I am routinely disrespected.

In the land of disability, prejudice, stigma, and ignorance play out in a myriad of ways. Yesterday, I had a somewhat bizarre encounter. Last week a dear and deeply valued friend hurt her back. After a sleepless night she went to the hospital. Hospitalized for less than a week she was transferred to a local short term rehabilitation hospital. I have visited almost daily and have provided many meals. This is what you do for good friends as the food served at the facility is inedible. Yesterday I visited in the late afternoon. After a short visit I left and that's when things got strange. I left the facility and due to a lack of curb cuts was in the street going uphill to my car.  I transferred into my car when I was suddenly accosted by two official looking men. The following exchange took place:

Men: "Sir, where are you going? You can't leave the facility"

Me: I have a puzzled look on my face

Men: "Sir, are you a patient?"

Me: "No".

Men: "We lose people here. The patients get out and wander away. We are worried about your safety. Can I see your license and registration? Can you prove you are not a patient?"

Me: "I am not a patient. You are not the police and have no right to ask for my license or registration".

Men: "So, who are you? How do I know you are not a patient?"

Me: "I am leaving. Have a good night".

The look on my face was clear. The interrogation was over. The ignorance displayed here boggles the mind. Of course, every person who uses a wheelchair is a patient. People who use a wheelchair are not independent. The ordinary is impossible. Obviously wheelchair users do not visit patients--they are the patient. I am still shaking my head in wonder. How many patients use a fire engine red manual wheelchair? How many patients will break down a manual wheelchair and put it in the back of an Audi? The answer is none. Yet, I was in essence wheelchair man. All wheelchair men are the same. All wheelchairs are the same. In the facility I visited every wheelchair is cheap, black, and wide enough to fit an extremely wide person. If these wheelchairs went outside they would fall apart in short order. My wheelchair is custom made and has a rigid frame. The difference between the facility wheelchairs and mine is vast. The difference is stark--as in a Ferrari versus an old Ford. I wish I could say I am surprised but I am not. This is not the first time I have been asked if I am the patient. The assumption made is basic--I am not an independent or contributing member of society. This is the personification of the medical model of disability. This is as distressing as it is disappointing. What the hell are health care workers being taught?

Thursday, November 3, 2016

On Being Called a Retard

Syracuse is a gritty city. Gritty is code word for poor. Poor people abound in Syracuse. Crime is rampant and often violent. There have been a frightening number of murders the year. There are areas of the city I simply do not enter. Despite all this I like the city. In my area, Franklin Square, industrial chic abounds. Funky examples of the industrial past have been repurposed. My building for instance was once a factory. On my walk to the bus stop in downtown Syracuse I walk along Onondaga Creek and through a few iffy blocks. The bus itself passes through impoverished neighborhoods. It is hard for me to imagine the living conditions for inner city poor people. What I do know is this sort of poverty is wrong and shameful.

There is one thing I dislike about Syracuse--the routine harassment I receive on my way to the bus stop. It is not a daily occurrence but I get hassled by street people and inner city youths who are trying to be tough. I am wary of street people as some can unpredictable. I am a magnet for the mentally ill and have had many unusual encounters. The youths however anger me. I do not fear them. They are wanna be tough guys. They mouth off and want to impress their peers. Since late August when I started using the bus regularly, inner city youths have verbally hassled me on a regular basis. Apparently youths think it is very funny to call me retarded. This only happens when I am alone. I suppose they think I am an easy target. Just the other day about eight youth with long boards decided they lived in a "no retard zone".  These young men went by me as a group and most yelled various themes on being retarded. "Fucking retard", "retard wheelchair", "twisted retard", "butt ugly retard", etc. In the last year I have heard the R word more often than I have in the past. Almost all people I know with a disability have been called retarded at some point in their life. I suggest the resurgence of the R word is partially to do with Donald Trump who famously mocked Serge Kovaleski a New York Times reporter who had a disability. It was shocking at the time. It is shocking in retrospect. It is even more shocking the alt right defend and explain this form of out right bigotry. For instance, Ann Coulter stated Trump did not mock a New York Times reporter. In her book In Trump We Trust, Coulter explained Trump was doing an impression of "standard retard".

Trump denied knowing that Serge was disabled, and demanded an apology, saying that anyone could see his imitation was of a flustered, frightened reporter, not a disabled person. It's true that Trump was not mimicking any mannerisms that Sege has. He doesn't jerk around or flail his arms. He's not retarded. He sits calmly, but if you look at his wrists, you'll see they re curved in. That's not the imitation Trump was doing--he was doing a standard retard, waving his arms. 

I am deeply troubled by what I perceive to be the resurgent use of the R word. Hence yesterday I was shocked to read "Raping the Retard Vote" as part of the North Carolina Voter Integrity Project. See the below disturbing image and link: http://voterintegrityproject.com/reaping-vulnerable-voters/


The title above has been changed to "Reaping Vulnerable Voters" but the content has no been changed. Apparently people with a disability are being "harvested" and their votes commandeered by Democrats. Of course there is no proof this is taking place but in this election cycle truth does not appear to be an important variable. The Voter Integrity Project suggests the following:

First, if you have any friends or relatives who are mentally incompetent and unable to function independently, pay attention to their voting rights.
Second, as an added precaution, please consider filming them as you ask them to discuss the election and whether or not they want to vote. Hopefully you won’t need this footage, but if someone harvests their vote, it will be nice to have the footage in court.
Third, the longer-term solution is to share that video footage with people like us at VIP and we will use that information to influence legislators into stopping the civil-rights raping of the weakest in our society.

David Perry, an astute journalist, was understandably outraged. Perry wrote:

There are moments when something is offensive and one hesitates to give them attention. Then there are acts of offense so great that they must be named, they must be condemned. For me, this piece - even with the less awful headline - falls into that latter category. It reflect an extreme version of the kinds of ableist stigma that we see constantly. This anti-voting-rights group has deliberately called into question the basic competency of people with varying types of disabilities into question. They advocate - presume incompetence, presume suspicion, videotape, report, and shame disabled people. Link: http://www.thismess.net

When it comes to disability society is not discerning. All cripples are lumped together. We are the other. The unwanted other. The ever present other and reminder our bodies are vulnerable. The disabled are to be feared, isolated and shunned. Stigma is rampant as is ableism--an ism hardly anyone without a disability knows exists. This leads me to wonder what might happen to me and others with a disability when we try and vote. Will an ableist bigot take my picture? Will I be filmed? Will a polling worker question my competence? What happens if a person who has Down Syndrome exercises their right to vote?  Will others competence to vote be called into question? What about the elderly? Will they be forced to prove they are competent?

We are in unchartered waters. Instead of assuming competence as Doug Biklen championed it seems we now presume incompetence. The street youths that harassed me do not exist in a social vacuum. Popular culture impacts all members of society and Trump has tapped into a well of anger and hatred. His mocking of a disabled reporter has unleashed ableist bigots who typically hide behind a veneer of Do Gooderism. Flat out hostility has replaced Do Gooderism. I am deeply worried about this. A war is taking place on people with a disability in the United Kingdom via worker assessments performed by ATOS. Will the same sort of war on disabled people take place here? It is possible if not likely. Think about it this way: what if I called the Syracuse police and reported a hate crime. I am without question a member of a distinct and insular minority group. Being called a "fucking retard" is without question hate speech.  Would the Syracuse police have responded? I think not.  I also think most people without a disability would scoff at the notion. And that my friends keeps me up at night.

Monday, October 17, 2016

On Being Haunted

I found the below photograph a year ago. The image haunts me.


The photograph is a polaroid circa 1969. It was taken in June shortly after I started to present significant and alarming neurological deficits. The photograph has resided in a box of photographs I have not looked at in a very long time. I do not like to have my picture taken. I especially dislike any photograph of me standing, walking, running or in any typical biped motion. In fact, I have studiously burned every picture I can find of me standing. After I was born, I had the luxury of normalcy for almost a decade. Between the ages of 9 and 18 I was not so lucky. I had three massive spinal surgeries, spent a year in a body cast, had an untold number of spinal taps, I took prednisone and decadron almost daily. Medical technology was primitive at best. I experienced severe pain of the sort that no human should endure. Pain started in my toes and shot up like lightening bolts into my lower back and exploded like the grand finale at an epic fireworks show. This could go on for hours or days. I developed fevers that shot up to 106.8 f. I shook violently for hours and sometimes for as long as a day. The spasms in my back were so severe that my skin turned red and all the valium in the world could not get my muscles to unlock. I learned to embrace pain like a long lost lover. Pain has been my companion since I was a boy. We get along well. I cannot imagine life without my buddy pain. None of this bothers me. It was and remains a part of life. My life was one in which hospitalizations were the norm. Wards of 16 morbidly sick children were my home away from home.  Scarsdale where my family lived, I quickly learned was fantasy land. In the famed Babies hospital I learned a different reality. In the winter saw men sleeping on the streets on card board boxes over the subway grates. I saw poverty out the hospital window over looking Broadway. I saw the gritty reality of Harlem. My peers told me about their dysfunctional families. I saw kids get a terrible diagnosis and was shocked that their parents never returned to visit them. Suffice it to say, I went through the medical mill. I suffered in a Biblical way. And thankfully my experience is a part of medical history. No child today will experience what I did.

The photograph above haunts me. It does not haunt me because of what I endured as a child. It haunts me because of what was about to take place. To this day, I vividly recall the back yard in the photograph. To the left would have been the large brick house I grew up in. It had a slate patio and screened in porch. To the right were woods and a steep hill. As I look forward there was a large red maple tree. In the woods stood a huge poplar tree I loved. I recall the striped red and blue shirt. It was my favorite.

The photograph haunts me because society killed the sweet little boy I once was. I am no longer sweet. I am no longer innocent. I am no longer young. I am a badly damaged man. I am inherently wary of bipeds. I trust no stranger. I assume the worst of others. I have been spit on, pissed on and disparaged on a regular basis for nearly 40 years. Ableism is very real and it is lethal. An unfathomable number of people with disabilities have been killed by a society that is indifferent and often hostile to the existence of people with a disability. When paralyzed at 18 years old in rehabilitation I saw depressed men disappear. Depression was not permitted. The depressed were shipped off to locations unknown. I am haunted by the thought of where did these men end up?

I have survived and thrived because I refuse to ever back down when confronted with baseless prejudice. Disability based prejudice abounds. Prior to the ADA, I had no rights. I did not have the right to a public school education. I did not have the right to get on a bus--any bus. I could not get on an air plane. I was deemed a flight safety risk. I could not legally go to public school until 1975. I was deemed a fire hazard. It certainly did not help that my mere presence was thought to be too upsetting to other children. The only sanctuary I had was my home and the hospital. To this day that feted smell one encounters when entering a hospital smells like home. I take a big deep gulp of air into my lungs and feel at peace. There were no bullies in the hospital eager to torture me. No one wanted to hurt the kid that was going through the medical mill and whose survival was iffy at best. I was with my people--sick children whose bodies were failing in a myriad of horrific ways. Most of the kids with severe neurological conditions died. I never talked about the future. I did not expect to have a future. I did not think I would be an adult. The toughest birthday I had was when I turned 21. I thought to myself--what am I going to do? I am going to become an adult. I was paralyzed and medically stable. My existence I quickly learned was an affront to typical others. Everywhere I went I was a problem--that is if I was lucky enough to find a building accessible. I was refused service in a multitude of restaurants. No wheelchairs I was told. I was told by professors that I was wasting a spot in the class. A non disabled student was far more deserving of an education. I was told repeatedly that it was unreasonable to think I could be employed. The bar was set low for a crippled man such as myself. I was ejected from more than a few sporting venues because they lacked any semblance of handicapped seating. I was once taken out of Yankee Stadium in handcuffs because I over turned a television camera. Many television cameras had replaced handicapped seating for the World Series. I was angry. I am still angry. I am a human being not a problem.

Yes, society killed the sweet little boy pictured above. I am wary of all others. I am certainly no longer sweet. I am a bad cripple because I have been forged by disability based bigotry that remains rampant today. No longer am I told "no wheelchairs". Instead bipeds lecture me about how Grant Auditorium at Syracuse University is minimally ADA compliant. Overlooked is the fact hundreds enter Grant auditorium via stairs and sit where ever they desire. I am relegated to the disability ghetto all the way in the back in a far off dark corner. No one wants to hear about the utter lack of accessible housing. When I want to move delete 95% of all housing options. I do not visit friends homes. No one lives in an accessible house and that includes my siblings. The barriers I confront, both physical and social, are overwhelming. The little boy in the photograph had no worries. That boy wanted to be like Tom Seaver and pitch in the major leagues. That boy got on a school bus and went to public school. When that little boy was paralyzed in 1978 after a decade of enduring the medical mill society killed him and created a different human being. You reap what you sow. In the King James Bible I read "Be not deceived; God is not mocked: for whatever a man soweth, that shall he also reap". I am far from the only bad cripple. While I lost much bodily being paralyzed, I have gained and become a thorn in the side of bipeds and typical others. I have gained much. I have a people--disabled people. We form a disenfranchised minority group. Our rights are protected by the law. The laws that guarantee our civil rights are not valued nor respected. The law is broken on a daily basis. And thus I am one of many who fight back. To me, this is called disability gain. More than just having a people, I have met unique humans with very different bodies and means of thinking and ways of navigating the world. We know we are unwanted. We don't care. We know we are not a problem. We are human beings with inalienable rights. Violate those rights and ableists will reap what they sow. This is what happens when a person such as myself is forged by disability based bigotry. That sweet little boy has grown up to be a hard man forged of steel.

Monday, October 10, 2016

Why I Try Not to Stop

I cannot ride my handcycle without a multitude of bipeds making unwanted comments as I go by. I am tempted to wear ear buds and play music but I prefer the sounds of nature. I am also hyper aware of my surroundings. Turning a handcycle is akin to turning a tractor trailer. Even more problematic is how others react to me. Last year a guy on a bike going in the opposite direction turned around and followed me for nearly four miles yelling questions at me. The typical reaction when I pass others is "cool". Kids are especially curious. The other day I was forced to a near stop as I passed many people  on an awareness walk. As I crawled by at a snails pace I overheard the following exchange between a mother and son.

Son: "Look Mom. That is the coolest bike".
Mom: "That bike is not cool. That man has an ego problem. He wants to be different for no logical reason. He has serious self esteem issues. Never ride a bike like that".

This is why I don't stop. The snippet of this conversation took place within ear shot. I was not more than two feet away from the mother and son. I was very tempted to tell the woman I was paralyzed (oh, the horror) and that she was point blank rude. I chose to remain silent. I saw no reason to engage this woman given her level of ignorance. Demeaning comments are an every day part of life for a person such as myself with an obvious disability. Strangers freely comment about me and my body. I am an open book and no question is too rude or inappropriate. Biped cripple social interactions that take place operate on the premise a biped is superior and the crippled guy is inferior. This plays out in myriad of ways. Let's say you live in Syracuse and feel like riding a bike. At multiple places along the Onondaga bike trail you can download an app onto a smart phone and for $10 borrow a bike.


Gotta love the orange color and old school styling. Let's say you are an undergraduate at Syracuse University and want to go for a ride on a bike. Yup, bipedal students can do this.


What if you are not a biped? You are screwed. No bike riding for the crippled. This is the norm nationwide. Think of the millions of bike shops, hotels and tourist destinations that rent bikes. None of them rent handcycles. You can rent a bike in pretty much every city in the nation. I would love to bike when I travel. Biking is a great way to get around and cover some serious miles. This is not possible for me and other paralyzed people. Yes, adaptive sport programs exist. I am sure given the time and energy I might be able to find an adaptive program willing to rent me a handcycle. The operative word here is might. To find such a program would be a daunting task--I have tried a few times over the years with no success. As I have noted in previous posts, money is a major variable. A biped can buy a bike on line or in a store such as Target for about $200. Hand cycles, like all adaptive sport rigs, are too expensive. A well used handcycle frame would cost about $600. A typical bike shop could provide wheels, brakes, and gears. Theoretically a bike shop could build a bike from the frame out. This would require a level of expertise most do not possess (myself included).

Twenty six years after the ADA was passed into law I remain a problem. The disability here need not be paralysis. Any person with a disability out and about  is a problem.  Stephen Kuusisto recently wrote the following:

I am a blind person. Notice I’m using people last language since in public I’m blind “first” and a person only in the most conditional sense. It’s not fashionable to say this. What’s popular in “the idioms” is arguing blindness is nothing more than an inconvenience, why it’s nothing really. I wish this was true. But in my experience I’m always a problem whenever I leave my house. I’ve written about this on my blog for close to nine years. Many disability themed bloggers also discuss the subject—this problematized life we endure when we venture out. https://stephenkuusisto.com

I have been writing about the problematized life for as long as Kuusisto. A vibrant online disability  rights community exists. I am routinely touched by what other people with a disability write on a host of different media platforms. I am not alone! I have countless brothers and sister who form a distinct and oppressed minority group. I am disabled and proud. Yet I remain lonely in the sort of way old bones ache. Why are there so few scholars with a disability? Why do nearly 70% of people with a disability remain unemployed? These questions lead me to ask where are my people? Well, most of us cripples live on the edge of poverty. Precious few of us are in positions of power. Few of us are in meetings when decisions are being made that will directly impact our lives. We are the unwanted. We are an economic drain and take up way too much space. The charity model of disability remains the norm. Bipeds think they get to choose what is and is not accessible. Of course we are accessible. I hear this all the time. Bipeds don't know what the world accessible means. I show up and cannot navigate the aisles in a given restaurant and only upon arrival do I learn the bathroom is located in the basement. Syracuse.com food writer thinks yes or no is adequate when it comes to access hence the reviews are useless.

What can one do in the face of ableism? Never ever give in. Get on the bus. Get on the plane. Get on the train. Stay in a hotel and expect a wheelchair accessible room to be readily available. Expect every building on every university campus to be accessible. Demand inclusion. Fight the good fight for I know all too well the easiest thing to do is not go out. Not going out the front door will lead to social oblivion. Do not let the bipedal hordes win. I will continue to be audacious. To do the ordinary is to be audacious for we cripples. It takes guts to leave our homes for we know we are unwanted. We are an economic burden. Worse, utilitarian theorists think cripples like me should not exist. At this point in life, I do not care what others think for if I cared I could never leave my home. The world is just too gorgeous to abandon.  

Friday, October 7, 2016

Rights Come to Mind

I was supposed to be in Washington DC today. For a multitude of reasons, I was unable to travel. I was supposed to say a few words about Joseph Fins new book Rights Come to Mind at the American Society for Bioethics and Humanities annual conference. Below is what I was prepared to present. It is longer than most blog posts as Fins work is nothing short of brilliant.

In 2012 I sent Joseph Fins an angry email. At the time, Fins was the President of the American Society of Bioethics and Humanities and I was furious. I planned to attend the upcoming meeting of the ASBH and I had gotten the run around. No one at the ASBH had any information about wheelchair access. A blizzard of emails were exchanged and I was no closer to accessing basic information about wheelchair access at the conference. My inquiries were met with shorter and shorter replies from conference organizers. Based on past experience I knew academic conferences are rarely inviting to scholars with a disability but the ASBH appeared to be openly hostile. When I got a dismissive email that stated “call the hotel” I could not control my fury. My wrath was directed at one man—Fins. I got an instant reply. Fins asked me to call him immediately. I did so and he instantly apologized. I was not the first scholar to complain about the lack of access for scholars with a disability. He told me he knew two other scholars one of whom was blind and the other deaf that had encountered significant barriers at the meetings. Fins also informed me that a ASBH presidential task on disability had been formed years ago and that concrete suggestions had not been enacted. He was clearly as frustrated as I was. Taken aback, I knew I had an ally.

Fins had quietly been working to make the ASBH meetings far more accessible. He suggested we meet in person to strategize—he wanted to work together and make the meetings not just physically accessible but welcoming to scholars with a disability. Fins response was highly unusual. Emails such as the one I sent are typically forwarded multiple times in search of an unlucky individual who is willing to write a reply. Fins and I did meet. He is an easy man to gravitate to. He is gregarious and if he is in a room you know it. What you do not see is how deeply he cares. He cares about people others in the health care system do not want to want to even think about. More than any other scholar I have met who works in bioethics, Fins gets disability. However he gets it in a unique way as physician without a disability. I have only met two physicians in my life that I can say this about—Fins and Arnold Gold.

Fins frustration is readily apparent in his book Rights Come to Mind. Fins marvelously sees a world of possibility among those who are in a minimally conscious state. Fins has no definitive answers. In fact, he raises more questions than answers. His work is deeply unsettling. Regardless of whether a person agrees or disagrees with his conclusions his nuanced discussion forces the reader to think long and hard. I consider Fins book to be the Triste Tropic of neuroscience. While Claude Levi-Strauss went to the Brazilian rain forest in search of humanity Fins delved into the lives of those in a minimally conscious state.  

Fins writing is a griping and wildly evocative. I felt like I was with Fins when he describes meeting the families of those who had a loved one experience a devastating traumatic brain injury. Thanks to remarkable advances in medical technology people survive severe trauma to the brain. The same can be said about spinal cord injuries. Rehabilitation treatment post acute care for those who experience a traumatic brain injury or spinal cord injury is cursory at best. If one does not rapidly improve, in mere weeks by health insurance standards, a person with a traumatic brain injury or spinal cord injury can find themselves in a nursing home before they have begun to grasp the implications of their injury. The subsequent familial, social, and economic implications post injury can and do devastate families. The families that were able to meet Fins are the tip of a much larger population that are carefully and dare I say knowingly hidden away.

Reading Fins book I kept thinking of a single word--disenfranchised. This word describes my life and all those who have experienced a severe spinal cord injury or traumatic brain injury. Disenfranchised describes we survivors. We are the other. Symbolically and practically we are feared, isolated, and marginalized. Our mere presence is upsetting to normates to use RoseMarie Garland Thomsen’s awkward phrase. Yet what I experience as a man with a disability who uses a wheelchair to navigate the world pales in comparison to the people Fins has studied. Fins is focused on a new class of people that have existed since 2002; that year minimally conscious state (MCS) became a diagnostic category. Simply put these people have been written off despite the fact 40% of those thought to be permanent vegetative state after a traumatic brain injury are in a minimally conscious state.

The idea that traumatic brain injuries and spinal cord injuries are static after an undetermined time period is false. What is observed clinically are significant and profound deficits. This is as obvious as it is devastating. The lived experience, however, is radically different. There is a failure of imagination that is astounding to those who go on to live for decades post spinal cord injury and post traumatic brain injury. From a clinical perspective we are medically stabilized, given a few weeks of rehabilitation and never observed again. This process is deadly. Medicine has collectively ignored the class of people Fins wants to help. Fins idea of help is tied to a civil and disability rights framework. This is why Fins book has been repeatedly referred to as quietly revolutionary. Fins work should be mandatory reading for all people concerned with social justice issues foremost among them disability rights. Elegantly written, Fins forces the reader to think the unthinkable. A persons life is saved after a devastating brain injury. After weeks or maybe a few months, a person is deemed to be in a vegetative state. Here the names are well known—Karen Ann Quinlan, Nancy Cruzon, and Terri Schiavo. Family members however see flashes of awareness and cognition. This is quickly dismissed as denial or delusional hope. Fins subtle but revolutionary point is that there is hope for those in a MCS. A damaged brain can and does evolve. The brain can change just as my spinal cord has since I was paralyzed in 1978. Yes, I remain paralyzed but not in the way I once was. Age and time has changed my body and this includes my spinal cord and the same can be said for those who have a traumatic spinal cord injury. This has been observed by parents who care for a child that has had a profound traumatic brain injury and whose cognition was severely damaged. (Peace and Roy 2012; Kittay 2002). Like me, these survivors change as they age. This change is part of life with a disability and modern medicine is ignoring a fundamental aspect of science. Adaptation and human variation is critical to our survival as a species. What we deem normal or even ideal is ever changing and subject to a multitude of forces. Enter Fins and his belief that over long periods of time the brain can evolve and recover to one degree or another. Fins is looking past the deficit and imagining what is possible. Can we reach people in a MCS? Is there hope in what most see as nothing more than tragedy. At Weill Cornell Medical College Fins characterized those that come to see him in the following way:

When they arrive, most are worn out. They are like refugees, having been cast aside by an indifferent health care system that provided brilliant emergency care only to abandon them thereafter. Irrespective of difference in race, ethnicity, class, or state of origin, a stereotypic pattern of neglect emerges… The overall story becomes rather predictable. Families face pervasive nihilism with practitioners assuming a static notion of brain injury. Despite stunning scientific evidence to the contrary, the prevailing view in the clinic is that all brain injuries are immutable. From this perspective, it is preordained that the injured brain cannot recover and that the humane course is to pursue palliative care, to let nature take its course.

The message here is far from subtle. Go away. You are wasting your time caring for such a loved one. Let nature take its course is a euphemism for the life in question is not worth living. Efforts to enhance the life of those who experienced a severe brain injury is a waste of limited health care resources. Devotion of family is perceived to be a problem. I understand both health care workers and family perspectives. A physician is being tasked to treat a person that has experienced a devastating brain injury. Here Fins brilliantly uses the experience of the Worthen family. Maggie Worthen was a senior at Smith College who experienced a brain stem stroke. Maggie survived her stroke and her mother, Nancy, did not believe her daughter was in a permanent vegetative state. After a battery of tests, Fins conformed Nancy Worthen’s belief; her daughter was at times conscious. Over time Maggie was able to communicate via a prosthetic device called My Tobii that tracked her eye movements. Maggie’s life and her mother’s effort to communicate with her is made all the more personal when Fins reveals she died shortly before his book went to press. Nancy Worthen’s quest was deeply personal and this forces the reader to think of Maggie as not a tragic life lost in its prime but rather the death of a human being that had human rights even in a MCS. If the reader does not become misty eyed when reading Fins book they have no heart. Essentially Maggie is the symbolic representation of all the families that sought out Fins who saw hope for their loved ones in a MCS. These families were not in denial. They did not have unrealistic hopes of a full recovery. The families Fins described simply could not give up hope a degree of recovery and communication was possible. Indeed, Fins amply demonstrated familial expectations were modest.   

Fins people, those with disorders of consciousness—especially those in a minimally conscious state—are at the edge of our understanding of what life means. Fins goal, is to give voice to these people and their families. Littered throughout the text are devastating and insightful critiques of society and our health care system. One sentence stood out to me though and I vividly recall pumping my fist after reading the following sentence: “The paradox is striking: the promise of neuroscience and the challenge of reimbursement schema that truncates the potential for recovery. Brains recover by biological standards, not reimbursement criteria”.

The Worthen family narrative is the heart and soul of Fins book.  Lest one doubt Fins, the text is based on exhaustive research. Fins details how we have failed those who are in a minimally conscious state via extended interviews with 53 families. Fins also conducted nearly ninety hours of interviews and produced 2,750 pages of transcripts. The conclusion is as inescapable as it is devastating. Fins “depicts a landscape of clinical neglect”. In essence Fins has penned the first ethnography of those in a MCS. As the custodian of 53 carefully crafted narratives, Fins “seeks to give voice to their struggles and to explain why the scientific study of brain injury, whose mysteries constitute the holy grail of science, has had so little impact on the lived experience of patients who have a tenuous grip on consciousness. Brilliant science and rather indifferent care. It is a paradox worthy of a book, and one ripe for denial”.

There is no question the American health care system has failed the families Fins interviewed. In 2015 Fins spoke at the Society for Neuroscience in Chicago and said the neglect of people with brain injury is “a question of depriving a highly vulnerable group of patients their civil rights”. This is a story people with a disability know all too well. Fins knows he is fighting an uphill battle. Those that understand civil rights and disability rights are one in the same could be characterized as crusaders or a social justice advocates. A few renegades are well known to people with a disability; Ed Roberts, for instance who is considered the father of the independent living movement. I thought of Roberts at the end of Rights Come to Mind because I found his short chapter—“A Call for Advocacy” nothing short of inspiring. Fins wrote:

We must build upon the disability rights movement with its deep debt to its predecessor movements and affirm consciousness as a right that must be recognized, respected, and enabled. It will foster productive science and rectify societal deficiencies that remain untenable, if not inhumane. The goal is a nascent social movement that will place the needs of these patients and families on the legislative agenda, so that in bipartisan fashion they can be fully protected under the law and receive the care and support that they need. To begin we need our generation of Freedom riders, those who won’t wait for the times to change but make them their own. These advocates will join in the long march of a new civil and disability rights struggle.

Where do we start such a movement that Fins calls for? In a word education. In an article about Fins book in the Houston Chronicle Star Fins made a provocative suggestion I want to expand upon. Fins stated “Why not think of rehabilitation as education?”  I would suggest rehabilitation was once educational and the best interests of the patient came first and foremost. In the late 1970s and early 1980s rehabilitation was primitive by contemporary standards. What it lacked in modern technology it more than made up for in its length and intensity. I am not suggesting we return to out dated ideas about paralysis and traumatic brain injury. I am however suggesting modern rehabilitation is horrifically flawed and fails to address the needs of people who experience significant neurological deficits. As I already quoted Fins: “reimbursement schema truncates the potential for recovery. Brains recover by biological standards, not reimbursement criteria”.  People who experience a significant neurological deficit such as a stroke, spinal cord injury or traumatic brain injury are simply not given nearly enough time to recover much less adapt to life post injury. Without question critical care most people receive is outstanding. But the rehabilitation process is swift and cursory. We are setting up people to fail. Worse, for those who Fins writes about they have been given no chance. This failure is not about the limits of modern medical care and rehabilitation efforts but rather a profound statement on the degree to which the lives of people with profound disabilities are not valued.

My suggestion is to add an additional step to the rehabilitation process in the form of an educational rehabilitation center. Borrowing from mental health care, I suggest educational rehabilitation centers be formed in a style much like halfway houses for those recovering from addiction. People post injury need time, support, peer mentoring, job training, communication development, and most of all time to adapt to an injured body. Among those I know who have lived for decades with a profound disability we laugh among ourselves that physicians consider our injuries are static. Our bodies change for better and worse. We adapt to those changes with grace and dignity. It is unfortunate clinicians are unaware and perhaps have no interest in what we might have to say about our quality of life. It gives me great solice and energy to know a man like Fins who is among the most distinguished bioethicists in the nation is advocating for my people. 

Tuesday, October 4, 2016

Rejecting Super Crip Stereotype: The Ordinary is Impossible

I have become a weekend warrior. Less than 10 minutes from my home is the Onondaga Bike Trail. I ride my handcycle around the lake. Google tells me Onondaga Lake is 4.6 miles long and 1 mile wide. I do not as yet own an odometer so I am not exactly sure how many miles I have been biking. Suffice it to say I am chewing up some serious miles. I learned this just yesterday in large part because it took me ten minutes on the interstate to locate the end of my route. Regardless, when I start out on my bike I crank as hard as humanly possible from the start of the trail to the end. I pass all sorts of people: families ambling slowly along, a sea of joggers, and when going flat out I pass other bikers. Believe me a handcycle can go fast and far. On my rides I thoroughly enjoy myself.

The down side to biking are the inevitable and unwanted comments. Everyone has something to say to me. I get it. A recumbent bike is out of the norm. A handcycle is even further out of the norm. People are inherently curious and difference attracts attention. What I have quickly learned is that stopping is a bad idea. People are eager to engage me. I have no interest in engaging others. The exchange is always the same: "Wow, that is such a cool bike" or "You are amazing!" or "I see you every weekend--remarkable" or "You are inspiring" or "You are so cute on your little bike" or "You need a horn" or "You shouldn't be allowed on the trail". These comments and others reinforce the idea I am inherently different. Idly stopping and having an ordinary conversation simply does not happen. I am also at the center of many passing conversations. Almost all those conversations revolve around how "amazing", "cool" or "inspiring" I am. I despise this. The reality is I am an average middle age white male who wants to enjoy being outside biking. There is not one remarkable, amazing or inspiring thing about me. I completely and utterly reject the super cripple narrative. I have not overcome paralysis. I have adapted to paralysis. I have not through sheer willpower and hard work overcome my disability. I have adapted to a world indifferent or flat out hostile to my existence. I am not the poster image of disability nor do I represent all disabled people. I am merely one man.

What the super cripple notion makes me is different. It forces me to be the other. The other can easily be turned into a stereotype. In my case, when I bike I am a triumphant figure. This incorrect belief only perpetuates the stigma associated with disability. It is inherently damaging because the flip side to this coin is that I make other people with a disability look bad. They are not triumphant figures. No sir. They are lazy and unmotivated failures. In individualizing disability it is all too easy to ignore or dismiss what is obvious to me: the constructed world is not made with cripples in mind. Barriers abound in the form of ableist bias that is woven into the fabric of society. I am repeatedly told that wheelchair access is very important and that inclusion of others is critically important. These are easy words to utter. Reality is different. For instance, Syracuse University constructed a multi million dollar promenade as part of its long term campus framework for the future. The promenade, a central feature of campus, has made the campus less accessible. When wheelchair users strenuously objected to the inclusion of multiple stepped tiers bipeds were shocked. At a recent meeting I stated that "the promenade project is a symbolic fuck you to every wheelchair user".  My statement was viewed as harsh. This is correct in a way: life as a wheelchair user is indeed harsh. My life and the lives of others with a disability is harsh because we are socially, economically, politically, and practically discriminated against on a daily basis.

Strangers are not intentionally demeaning me when I ride my bike. They want to feel good about the world. We Americans love stories of overcoming adversity. I am in the estimation of the bipedal hordes that surround me a classic over achiever. I have triumphed in the face of disability. Bull shit. Yes, I have worked hard but what I have overcome is a social system that plays lip service to the inclusion of people with a disability. Bipeds and those that do not live in the land of disability ask all the wrong questions. Instead of deeming me a super cripple and being awed that I am doing the ordinary typical others in an effort to feel good are only further alienating me. Bipeds just don't get it. There is a cultural divide that they do not even know exists. The real reason you do not see people such as myself biking is because handcycles cost a fortune. All adaptive sports equipment is ridiculously expensive. A ski rig costs thousands of dollars. The same can be said of handcycles. At the well-known website, bike-on.com, one can purchase a hand cycle that can cost upwards of $10,000. Entry level racing handcycles start at $5,000. These prices preclude almost all people with a disability from participating in the ordinary. Yes, adaptive sport programs abound. Special adaptive events are held nationwide. All this is wonderful and I truly support adaptive sport programs. Here is the proverbial but. What sort of message are adaptive sport programs sending if participants cannot afford to own adaptive gear such as handcycles or a ski rig.  Are we people with a disability relegated to special events just as we are relegated to special education, special buses and special transportation? What about family life for a parent with a disability? You are married and have a child. You are one of the few people with disability who are employed and have access to mass transportation so you can get to and from work. You want to bike on the weekends with your child. How many families can spend $5,000 on a handcycle or the same amount on a ski rig? Virtually none. The ordinary is never really ordinary for my people.

Brilliant adaptive design exists. Your average cripple can look at such designs but almost all cannot afford such design. For a mere $10,500 you too can own the Carbonbike Evo Jet.


How about a Panthera X wheelchair? This carbon fiber framed wheelchair costs about as much as a brand new Fiat.




How about a racing wheelchair? This beauty can be had for just $3,300.



Let's do a little math. Every day wheelchair of my dreams--$12,000. Hand cycle, $10,500. Racing wheelchair, $3,500. Ski rig, $5,000. That adds up to a very expensive $31,000 if my math skills are up to par. I understand top of the line design is expensive. I also know we live in a capitalist system and that without profit margins excellent design and innovation wouldn't exist. But at what expense to others, in this case crippled others, is acceptable. There are profound economic reasons why I am the only weekend warrior riding a handcycle. There were a myriad of reasons when I got my degree at Columbia University that I was the only wheelchair user on campus. There are reasons why I know no other fathers who are paralyzed. I find it distressing that I am the only faculty member that is paralyzed at Syracuse. I am appalled that all my students answer no when I ask them if they had ever had a wheelchair user professor. I have been asking this question for 25 years. This is what bipeds don't get. The reason wheelchair users are virtually invisible from the work place and routine social interaction is because the social system and our constructed environment present barrier after barrier to inclusion. Ableism is ever present. I see it but typical others do not. They see a super Cripple. Sorry but no. I forcefully reject that label. I am simply lucky. I had great parents who insured I had every opportunity to live a rich and full life. Shortly after I was paralyzed I knew the world was hostile to my presence. That hostility has not appreciably changed in the last 35 years. Education my father told me was the key to success. Well, I got a world class education and have had led a good life as an academic or public intellectual. Life however has never been easy. I have struggled greatly in terms of employment as the university system nationwide has embraced a business model of education. We live in an era in which the University of Iowa hired Bruce Harreld as president--he of Boston Market fame with no experience in higher education. Other examples abound.

Think about how the ordinary is impossible. Recently I met a visiting graduate student from abroad at Syracuse University. The student wanted to do something ordinary. She wanted to try to ride a handcycle before the weather turns too cold. Now if this student did not have a disability she could have gone to the Onondaga bike trail, downloaded an app and rented a bike for $10 for one hour.  This is what any biped could do without thought. Indeed, any biped could do this each and every time they go on vacation. Enter the need for a handcycle and the ordinary is not possible. I could not find an adaptive sport program that could lend the graduate student a handcycle. It is my hope the student can participate next spring in an adaptive event and access a handcyle. This special event will surely inspire the bipeds who happen to be outside that day just as I inspire people I pass every weekend. To say I am frustrated is a massive understatement. 26 years after the Americans with Disabilities Act was passed into law the ordinary remains impossible.

Monday, September 19, 2016

Inequities and Wheelchair Repair

My wheelchair frame is 30 plus years old. I have bad insurance. Bad insurance equals limited coverage. My insurance deems a wheelchair a one time life time purchase. When it comes to adaptive gear that makes my life go I am screwed. It all comes out of my pocket.  Given this, I opted out of the durable medical goods industry long ago. I read about new wheelchair designs and keep up with the industry from afar. No current wheelchairs are of interest aside from a Panthera manual wheelchair made out of carbon fiber. The decision not to buy a Panthera wheelchair is easy--it costs about the same as a new Fiat. Sorry but no. I am not going to spend a small fortune on a wheelchair that cannot be insured nor repaired without proprietary parts. 

The above leads me to question: what do you do when your customized wheelchair breaks? If you are a power chair user the answer is get ready for a tortuously long wait. A long time here can be weeks, months and in some instances years. Getting parts for any wheelchair is not easy. Finding a person competent to repair a wheelchair is an epic battle. Getting insurance to pay for the most mundane of repairs requires one to navigate byzantine bureaucracy. Every time my wheelchair breaks, a truly rare event, I consider myself lucky. I can repair or replace almost any part on my wheelchair. However, getting parts gets harder by the year. My wheelchair frame is ancient and finding parts that routinely wear out such as bearings, tires, and wheels is now a challenge. While I find newer wheelchairs of interest I always fall back on a simple reality--old technology works.  

What do you do when your wheelchair needs a repair? Be prepared to wait. If a person is reliant on Medicare the website states the following: 



If you have a chronic condition and will need DME for a long period of time, it important to learn about Medicare’s rules for replacing your equipment. Replacement means substituting one item for an identical or nearly identical item. For example, Medicare will pay for you to switch from one manual wheelchair to another, but will not pay for you to upgrade to an electric wheelchair or a motorized scooter. Medicare will pay to replace equipment that you rent or own at any time if it is lost, stolen, or damaged beyond repair in an accident or a natural disaster. Medicare should cover a new piece of equipment with proof of the damage or theft.
If your equipment is worn out, Medicare will only replace it if you have had the item in your possession for its whole lifetime. An item’s lifetime depends on the type of equipment. An item’s lifetime is never less than five years from the date that you began using the equipment in the context of DME replacement. Note that this five-year time frame differs from the three-year minimum lifetime requirement that most medical equipment and items must meet in order to fall under Medicare’s definition of DME. The item must also be so worn down from day-to-day use that it can no longer be fixed. Keep in mind that Medicare will repair worn out equipment up to the cost of replacement before the end of its lifetime. Medicare will only cover replacement equipment if your doctor writes you a new order or prescription with an explanation of the medical need. If you are affected by the competitive bidding demonstration, you must use a contract supplier to replace your equipment. If you are not affected by the competitive bidding demonstration, you can use any Medicare-approved supplier to replace your equipment. However, you will pay the least if you use suppliers who accept assignment. 
Read the above and it is very clear if your wheelchair breaks you are essentially out of luck. For a person like me if my wheelchair breaks it must be repaired immediately. If my wheelchair breaks forget going to work. Forget the bathroom. Forget cooking. Forget life. My wheelchair must be fixed when I hear the shuddering creek of metal, jarring on my front wheelchair wheel or something as ordinary as a flat tire. Again, I can replace or repair pretty much anything on my wheelchair but what if you can't? Lots of people can't. Most people can't--especially those that use power wheelchairs. Remember too that wheelchairs are highly customized. Here is the worst part: wheelchair repair shops do not exist. Imagine you are content without a care in the world and you are in your impressive and speedy power chair. What happens when it just stops working? This scenario is far worse than what I encounter and not at all uncommon. 
The above thoughts were prompted by an article in the BBC News. At the Paralympic Games there is an adaptive sport gear repair shop.  The repair center is operated by Ottobock. A German Company, Ottobock is one of the largest makers of durable medical goods in the world. Here in the USA I think of Ottobock as being a prosthetics company but they manufacture all sorts of things. In Rio, Ottobock shipped 18 tons of equipment for the games. 16,000 spare parts, 1,100 wheelchair tires and 70 prosthetic running blades. Since the Paralympic games started, 2,970 repairs have been made. Those repairs have been made with speed and precision. 
In the United Sated one of the largest companies that manufacture wheelchairs is Sunrise Medical. They make Quickie wheelchairs most commonly used by paralyzed people. They are commonly used because Sunrise Medical meets insurance industry price points. This does not mean their wheelchairs are well made or durable. Regardless, google Sunrise medical. Search "repair" on the website. The search will yield "no results". Try another large manufacturer such as Invacare. They make Top End wheelchairs and hand cycles. They also make many different power chairs. Good luck trying to locate repair services on their website. 
Replace the word wheelchair with the word car. If your car broke down how long would a repair take? Most people would be furious if a repair took more than a day. One would certainly expect to get a loaner car of comparable quality while the repair was made. This would be a seamless experience. We are talking about a lot of money. Start on the low end. Being very conservative if I had a Panthera wheelchair it would cost at least $10,000. Parts would likely need to be ordered and shipped. That could take weeks if not months. Would this be acceptable if I owned a $10,000 car? Not a chance.  A generic power chair cost at least $10,000 and can reach super car price ranges. A repair to a power chair with something more than a battery issue is going to take a while. A while here is weeks if not months. Would any reader be willing to wait months for a car company to repair a vehicle? If that was the norm the car company would be out of business in a heart beat. Yet wheelchair companies appear to be exempt from the repair business. 
How can this be? The answer is ableism is rampant. Cripples can wait. Our life sucks or so many bipeds tell me. We are poor. We are unemployed. We have no life. We are the symbolic representation of the limits of medical science. We are not thought to be "well" nor are we "sick". We are fish nor fowl. We are a curiosity. Our lives are an open book for others to question. Ableists complain that our existence is costly. One judge in Connecticut thinks severely disabled children are incapable of learning and valuable resources are being wasted on such students. The message is unrelenting--we cripples are a problem. Your wheelchair is broken? Tough luck. You can wait. Wheelchair repair shops don't exist. Of course not, there is no money to made in repairing wheelchairs. The fact that wheelchairs empower people is conveniently ignored. Our lives are devalued in every way imaginable. Being devalued is built into the fabric of society. Nothing is ordinary about our lives.

Frankly, I am angry. Just today I read the following:  Most discussions of ableism prioritize its external forms: staircases without ramps, misguided offers of help, applauding disabled people for being “so brave.” Disability itself remains something we “tolerate” or “live with” (but would, of course, “fix” if we could). That kind of ableism – that turns us against ourselves by lying about what success, politeness, health, and independence look like – isn’t broadly acknowledged as internalized oppression yet. Link: http://www.autostraddle.com/telling-myself-the-truth-5-strategies-for-fighting-internalized-ableism-350528/ The ADA is 26 years old and while the law is on my side, the ADA, one could argue it is stealth legislation. People know the ADA exists and there is the general sense the law solved problems we cripples encountered. The ADA has not solved the problem. The problem is that I and my fellow cripples are not a problem. The ADA has created a bureaucracy and there is a sense the letter of the law must be met. The result can be something like the multimillion dollar Syracuse University promenade.  Many bipedal people have repeatedly told me how great the promenade is. It has enhanced wheelchair access at Syracuse! The people that state this do not use a wheelchair. The people that I know who use a wheelchair consider the promenade to be a symbolic fuck you. Bipeds do not like this reaction. I can't blame them one bit. There is cultural divide here as broad and as expansive as the Grand Canyon. Somewhere in that expanse my voice and the voices of other cripples get lost. More than ever, the slogan nothing about us without us fits.