The Relentless Push for Assisted Suicide Legislation

Relentless. Those that seek to pass assisted suicide legislation into law are relentless. Nothing will disuade them from their goal. I have not observed this sort of commitment outside of religious or political fanaticism. I am not suggesting the people and organizations that advocate for assisted suicide are fanatics. Quite the contrary, most are good people with a strong opinion on an important topic. Most that advocate for assisted suicide are white, middle aged, and well educated. I will acknowledge they have good reason to be concerned about the way we die. To witness the bad death of a parent, spouse, sibling, child, or close friend is a horrific life changing experience. What advocates fail to grasp is people die badly for cultural reasons. Americans fear death and value autonomy above all else. I find it tiresome to hear people state that when I cannot control my bladder and bowels I want to die. I will not let another person wipe my ass, dress my body, and feed me. I would rather die than go to a nursing home. All of this undermines a narrow concept of autonomy.

I too bemoan the fact people die badly. However, assisted suicide legislation is not the answer. We simply do not need such laws. I have long wondered why people insist on pushing assisted suicide legislation when what is need is a national discussion about end of life in general. My recent experience in Boston testifying in opposition to H1998 helped me understand where proponents of such legislation have gone wrong: they have turned the debate surrounding the end of life into a public policy question.  At no point are the larger cultural implications of assisted suicide legislation considered. This reduces the debate to be about individuals rather than about the social forces that drive one to conclude their life has no value and death is preferable to life. To me, this is a socio-cultural tragedy not an individual failure or issue of choice. More to the point, lives are at stake. This was on full display symbolically in Boston. Proponents of assisted suicide wore blue stickers that read “My life. My Choice. My death”. This slogan is wrong. Simply put, no human being dies in a social vacuum. Death is never about an individual alone.

Recently I came across an article circa 1996 by one of my former professors, Cheryl Mwaria. In “Physician-Assisted Suicide: An Anthropological Perspective” she wrote “Missing from this debate is a discussion of the social  consequences of hidden expectations and obligations with respect to access to health care, allocation of resources, terminal and chronic illness, disability, difference, suffering, and the nature of death itself”.  Anthropologists have known that the end of life and suicide are perceived quite differently from culture to culture. This is not exactly news to most social scientists. After all one of Emile Durheim’s most famous texts is Suicide written in 1897.  Durkheim observed that there were four types of suicide: Egoistic, Altruistic, Anomic and Fatalistic. For those interested, I urge readers to take a fresh look at Durkheim. I have and in conjunction with the work of Margaret Pabst Battin’s Ethical Issues in Suicide I think it is very hard if not impossible to ignore the cultural reasons why people choose to end their life. Thus the sticker My life. My choice. My Death undermines our ability to understand the social mechanisms that can and do lead to unnecessary deaths. Those most at risk are those with chronic illnesses, the terminally ill, the elderly and those with a disability. Let me put it more bluntly, my life is at risk.  

Those that argue assisted suicide is about individual choice, the relief of pain and suffering are being disingenuous. People do not choose to die because they are in pain. People die because their life lacks meaning and they fear losing their autonomy.  But groups such as Compassion and Choices that lobby for assisted suicide legislation never define what autonomy or dignity is. A good death is not defined by those for or against assisted suicide legislation. It seems to me a good death can radically differ from one person to the next and from one culture to another. Compassion and Choices would have people believe there is a uniformity in the way people die. This is simply incorrect from a social scientific viewpoint and constructed on sloppy thinking. As Mwaria pointed out a term such as death with dignity encompasses a hidden assumption: “that life with a profound disability is lacking dignity. There is  a genuine and warranted fear on the part of many people with profound disabilities that their lives will devalued, considered not worth living”. This plays out in a myriad of ways throughout the life cycle but is most apparent at the start and end of life. Trisomy 13 &18 was until recently considered a condition incompatible with life. Thanks to the work of Barb Farlow and others this belief is changing. Even staunch advocates of assisted suicide such as Battin concede what is known as the social burden argument is “problematic” with regard to physician assisted suicide. Let me be more blunt: people with a disability have good reason to fearful because physicians who do not know anything about life with a disability are the experts and gate keepers when it comes to assisted suicide.  What physicians know is the cost in terms of care and finance can be enormous. Here enters scholars such as Peter Singer and other utilitarian philosophers. They have changed the cultural perception of death in academic and popular culture. Rarely do I hear people discuss how we can compassionately care for the sick. Instead the phrase patient centered care is thrown about as the panacea that can correct all wrongs. In reality patient centered care means you are on your own. I never hear people discuss the need for social supports for people with a disability. What I hear and read about is the efficient expenditure of limited health care resources. For most this is an interesting topic of discussion. It is an abstract discussion seeking to help the greater good. For me the subtext is obvious: I am an expensive person. My existence and others like me is costly.

Clearly I am not in a warm and fuzzy mood on Christmas Eve. I am seriously worried about my future. I am a white, single, middle aged man who will grow old alone. This scares me. I am not afraid of dying. Death is inevitable and I plan to squeeze every last ounce of energy out of my body. A body that has served me well despite being paralyzed. I will not under any circumstances go gentle into that good night. I am not worried about myself. I am worried about a nameless and faceless physician who I do not know that will decide I have “suffered enough” or lived long enough. Perhaps I do not need those life saving antibiotics. Perhaps this physician will paint a gloomy picture of the future that any sane person would find unacceptable. I do not envision things getting any better.  

Watch Out

Like many others, I struggle during the holiday season. Holiday cheer often creates a time of great stress, family strife, financial stress, and depression. I think I have experienced much of this in last week or so. I have also been happy. My son is home and Sunday we went to the American Museum of Natural History and Zabars.  We enjoyed a West Side day in the city and it was amazingly warm. Nearly 70f.  It was great to see lots of families and children of all ages stare in wonder at the impressive museum collections.  It was not an easy day for me. My wheelchair is akin to a portable social isolation unit. I cannot simply enter an elevator like others. On a busy day I wait with others who do there very best to distance themselves from me. I heard dozens of parents tell their children "Watch out for the wheelchair". I saw other parents yank their kid's hand hand firmly and pull them away from me. I was stared at often. I was avoided by most. This bothers me. Bad lessons were taught by good parents.  I felt great stigma.

As I drank my tea this morning I was very tired. My son and I had a late into the night chat about life. It was truly wonderful but I was slow to get moving in the morning.  Then I read Stephen Kuusisto's latest post at Planet of the Blind and knew I was not alone. Link: http://www.planet-of-the-blind.com/2013/12/look-theyre-staring-at-me.html  I was struck by the following: "I'm just a blind guy. I walk with a guide dog. I don't represent anything.  I don't portend God's unhappiness. I don't need you to prat for me. I don't require a donation. I don't want you to run in front of me and open the door".  For people with a disability we always seem to represent something we are not.  Anonymity is impossible. Routine is never routine. Social exchanges are awkward at best. Physical access is never simple.  Stares common place. It is hard to feel normal if not impossible. The ordinary is impossible. We people with a disabled body represent something we are not for others who know nothing about disability or my life in particular. The psychic drain this causes is a heavy burden to bear. It is in fact relentlessly depressing. It wears on you in an evolutionary way. It is easy to be ground down. It is easy to to let millions of small psychic cuts and wounds destroy your life. It is easy to remain shut in to your home and away from others. It is easy to cope in self destructive ways. There are many easy ways to be defeated by the bipedal hordes that think they know all about my life when in reality they know nothing.  Like Kuusisto, I represent nothing. I am simply a human being. Nothing more, nothing less. And yet when I was driving home with my son I felt less than human and this is not an easy reality to fight.

Omni Parker House Reply to the Lack of ADA Compliance

I just received the following inadequate response from Jeffrey Collura from the Omni Hotel Parker House in Boston.

Hello Mr. Peace,

I am writing in response to the survey you have completed.  Thank you for sharing your feedback with us.  We will be reviewing your feedback as a group and implementing anything that would make our ADA guests’ stay more enjoyable.

Thank you for staying with us.

Sincerely,

Jeffrey Collura

Director of Rooms

What a disappointment. Hello? Really? I would think one would err on the side of formality rather than use the colloquial hello. How about an offer of a free room or a refund? I read reviewing feedback as a group means no changes will be made any time soon. In fact the response appears to be a pre-written stock reply.  The Omni lost my business for sure.  

O Canada! I Take the Heart and Stroke Foundation to Task

Thaddeus Pope and I disagree on many things. However we are quite capable of sitting down and discussing where we agree and disagree. So it is thanks to him and Facebook I came across the following video created by the Canadian Heart and Stroke Foundation.



I am stunned by this video. The express purpose of the video according to the Heart and Stroke Foundation is to promote good health. Link: https://www.makehealthlast.ca  In a highlighted box next to the video it states "Canadian are living longer. But not necessarily healthier. On average, we'll spend our final ten years with sickness and disease.. However, we can change this. The choices we make now can help shape a future of strength and vitality instead. The Heart and Stroke Foundation wants to help Canadians like you make those choices. So you can spend every moment not just living, but truly alive. Now's the time to Make Health Last."  One is then supposed to take a risk assessment.

I will accept the intent of this video was to promote good health. I took the risk assessment. Apparently I have a good diet. I am physically active enough but I could drink a little less alcohol and reduce the consumption of salty snacks (like I didn't know this). The Heart and Stroke Foundation is undoubtedly promoting a healthy life style and making some common sense suggestions. Again, the intent is good.  What disturbs me is a word that is not used in the quote above--disability.  While the word disability is absent, it is used as a counterpoint to good health and quality of life.  Disease and illness are bad. Disability goes hand in hand with disease and illness thus by extension disability is just as bad. I am not being an alarmist. I offer up the following counterpoints that are disturbing:

Quote: "We'll spend our final ten years with sickness and disease".

Translation: The final ten years of life you will be a burden upon others and family. You will be disabled and lose your dignity. You will be a drain on limited health care expenditures.

Quote: "We can change this".

Translation: If you alter an unhealthy diet, become active and avoid stress you can avoid becoming disabled. Fear is very effective.

Quote: "You can spend every moment not just living but truly alive".

Translation: Death is preferable to a life with a disability.  One cannot have a disease and illness and have a good quality of life.

One word though leaped off the page and sent a chill down to my level of paralysis--help. The Heart and Stroke Foundation wants to help Canadians. When someone wants to help me, especially in a health care setting I am sure of one thing--I am screwed. When I hear the word help I am instantly on high alert if not fearful. This is part and parcel the history of disability. Many people want to help but no one ever asks why or how. A predetermined outcome has been decided under the guise of help. These decisions are usually made without the input of the people they are designed to help.  Disability history is replete with help for the disabled. Help in my mind is associated with travesties and nightmarish narratives.  Examples abound:

Women and men sterilized without consent. Read Unspeakable: The story of Junius Wilson by Susan Burch & Hannah Joyner.

Forced and coerced institutionalization: Read Acts of Conscience: World War II, Mental Institutions, and Religious Objectors by Steven Taylor.

Ugly Laws few even know existed. Read Ugly Laws: Disability in Public by Susan Schweik.

I could provide hundreds of other examples and suggestions. The skeptic will posit: "Come on Peace you are talking about the past. The ADA has been great for people with a disability." This statement is correct and false at the same time. The ADA does indeed protect the civil rights of people with a disability but there is no social mandate for the law.  The ADA is perceived to be an onerous and unfunded Federal mandate. Please do not expect me to celebrate--not when a man such as Timothy Bowers who experienced a devastating spinal cord injury is counseled by his family and physicians to die within one day of his injury. I can not celebrate knowing Christina Symanski, a quadriplegic that dehydrated herself to death because she felt her quality of life was insufficient. I cannot celebrate when a profoundly cognitively and physically disabled child is unlawfully sterilized at the urging of her parents and physicians at a leading children's hospital in the nation.

The Heart and Stroke Foundation tried to help but there is a dark underbelly graphically illustrated in the video. Good parts of life include bikes, family life, walking, fishing, vitality, jogging etc.  Bad parts of life include wheelchairs, stair lifts, medication, assistance eating and drinking, hospitals, nursing homes, oxygen, social isolation etc. This overly simplistic dichotomy of good versus bad is inherently destructive.  The video might prompt some to embrace a healthier lifestyle but at what cost? The fear and alienation it promotes is unsettling because it reinforces the already existent social isolation of the elderly, terminally ill, and disabled. I think we need to rail against this as a human rights violation.  This is the sort of help I will gladly accept.

I Testified in Boston: A Problematic Trip from Start to Finish

I was one of several disability rights activists that spoke yesterday before the  Massachusetts legislature's Joint Committee on Public Health in opposition to H 1998, which would legalize assisted suicide in the state. The group called Second Thoughts was instrumental last year in the defeat of the Massachusetts assisted suicide referendum, Question 2. John Kelly and others deserve our thanks for their hard work and efforts. I was delighted to be among those that are opposed to assisted suicide legislation but I am concerned we are fighting an uphill battle. In fact it appeared to me the audience was dominated by proponents of assisted suicide. This is disheartening. Equally problematic was the fact very few people with a disability were present (by disability I mean people with an obvious disability such as wheelchair users). In a large room filled to capacity of well over 100 people I would estimate there were less than ten people present that used a wheelchair.  This is a real problem symbolically and practically because it reveals how disenfranchised we people with a disability are.  

Merely getting to the State House was difficult if not impossible for some people with a disability. I hate to admit this but my testimony was terrible. I am a good public speaker but failed miserably to impress. I have lots of excuses or to be kind to myself legitimate reasons for why I spoke so poorly. The trip to Boston was going to be brief.  I left on Monday and returned home Tuesday. I have not been to Boston in many years. I now remember why I do not go to Boston--it is a very difficult city to navigate for a wheelchair user such as myself. My visit was especially difficult because it had snowed in Boston a few days before I arrived and the streets were clogged with snow. Finding curb cuts and a place to cross the street was a challenge.  More than once I had to take a much longer route to get to where I was going. This I expected. What I did not expect was the ADA nightmare that the Omni Parker House presented. I chose this hotel for one reason--it was two block from the State House. The Parker House was without question not accessible. Valet parking was at the center of a small side street. There was no curb curt. The valet entrance to the hotel was not accessible. I exited my car and had no choice but to navigate up the street in the road. This was not less than ideal it and was to a degree dangerous. The main entrance was unacceptable. The automatic doors were extremely narrow and it is unlikely a person using a power wheelchair could get in the building. Regardless, the lobby was gorgeous and hotel staff exceedingly polite and efficient. 

I can overlook the awkward entrance and valet parking. This is uncommon but I am staying one night and the location is ideal. I tell myself forget it--a minor inconvenience. I get to my room, throw my bags down and go out eat a lunch that was delicious. I go back to my room and realize I have a major problem. The bed is high--really high. Not a chance I can make the transfer.  The bed is as high as the dresser in the room.

This is an increasingly common problem. The fashion trend in the hotel industry is for beds to be high.  These beds look good and I am sure housekeepers love them because it is involves less bending over when sheets are changed. I call the front desk to complain and they connect me to housekeeping and two very polite men show up. The established solution I am told is to remove the box spring. They do this and I can now make a transfer.  I now know why beds have a box spring. I spent a miserably uncomfortable night on a mattress that was a lumpy mess. I also woke with a small but very red skin mark. I am not happy.  I pack up my things in the morning, check my bag, and head off the State House--an impressive building indeed.

The State House is indeed two blocks away but if you use a wheelchair the State House is actually four blocks away. Four block that are uphill. I arrive early am relieved to find an accessible restroom. The room where the hearing is being held is easy to find. Wheelchair access in the room leaves much to be desire. Essentially a wheelchair user is relegated to the aisles. The assumption of coure is that a large number of people that use a wheelchair will never appear. Once settled in the room, I wait over  two hours to give testimony. The room a veritable steam bath and I am spent by the time I speak. I struggle in the heat and felt sick. I did my best under the circumstance but my best was not very good. 

I provide this personal narrative to highlight an essential problem: people with a disability are grossly under represented for symbolic reasons--I accept this as a given. In addition, 23 years post ADA real  daunting logistical barriers are common place. These barriers are so overwhelming there is no doubt in my mind some people with a disability could not attend the hearing because it was physically impossible to get to the State House. I had trouble too but I am well aware I enjoy a position of privilege. I had the support of Not Dead Yet and could stay in an expensive though not very accessible hotel. I had my own car. I could afford to go out to eat and had a nice dinner. I was not dependent upon mass transportation or an ineffective para-transit system. I do not use a wide or large power wheelchair.  I do not have autism so the large overheated room with far too much stimuli did not affect me as it did others.  This list could become very long. The point is we people with a disability were grossly under represented for reasons I find objectionable. Physical barriers are simply unacceptable. 

Two final points. First, the drive home was twice as long as usual. I drove through a snow storm and the roads were slick with snow and ice. A three hour drive became six hours.  Second I have mixed feelings about the hearing. Three minute presentation are useless. Testimony is essentially a brief summary published work or opinion.  I am glad I attended the hearing and consider my testimony and the testimony of others opposed to assisted suicide legislation critically important.  Yet on my snowy drive home I could not help but worry. Will a staffer collect the testimony into two neat piles: for assisted suicide and opposed to assisted suicide. Will this staffer, who might not be familiar  with the issue, write a one page summary of the testimony. Will politicians delve deeply into the materials provided which would take days to read through. I doubt it. I am skeptical and might be wrong. This is not a constructive observation because I have no viable solution or alternative to offer.  For better or worse, I witnessed and participated in the democratic process--a process too few people with a disability have the power to attend. 

More on Mandela Fraud

More details are emerging regarding the fake interpreter at the Mandela memorial.  The fraud, Thamsanqa Jantjie, was a qualified interpreter hired by the African National Congress from his firm South African Interpreters.  In multiple interviews Jantjie stated he had a sudden schizophrenia attack and was hearing voices and hallucinating. I am far less interested in these sort of details than I am with the way the incident has framed deaf people in particular and more generally disability  There is an excellent article in the Guardian, "The Fake Mandela Memorial Interpreter Said it All". Link: http://www.theguardian.com/commentisfree/2013/dec/16/fake-mandela-memorial-interpreter-schizophrenia-signing Two quotes leaped off the page for me.


Those of us who hear well and do not understand sign language assumed that his gestures had meaning, although we were not able to understand them. And this brings us to the crux of the matter: are sign language translators for the deaf really meant for those who cannot hear the spoken word? Are they not much more intended for us – it makes us (who can hear) feel good to see the interpreter, giving us a satisfaction that we are doing the right thing, taking care of the underprivileged and hindered.

Now we can see why Jantjie's gesticulations generated such an uncanny effect once it became clear that they were meaningless: what he confronted us with was the truth about sign language translations for the deaf – it doesn't really matter if there are any deaf people among the public who need the translation; the translator is there to make us, who do not understand sign language, feel good.

The above reminds me of why the ADA has failed. There is no social mandate to support the law. There is never wide spread outrage when the civil rights of people with a disability are violated. No one cares if I can get on or off a bus, train, or plane. No one cares if an interpreter shows up or if they are competent. Let's just make a joke of this. Let's not think about what a person with a disability can do. The only thing others think about is what a person with a disability cannot do. Until this line of thinking is undermined disability rights will remain poorly understood and the sort of advances needed to improve the lives of an untold number of people illusive. 

Boston, MA: My Opposition to Assisted Suicide Legislation.

Tomorrow I am giving testimony before the Massachusetts Legislature Joint Committee on Public Health in opposition to H 1998 which would legalize assisted suicide in the state. Below is my very short statement. 

In the fall of 2010 I was seriously ill. After 35 years of of paralysis I developed my first and only major wound. My wound needed to be debrided—a bloody and arduous procedure that was the first step in what knew would be a long recovery process. Anyone familiar with the complications associated with spinal cord injury knows the type of wound I had (stage 4) is a potentially life threatening condition. In the initial stage of my recovery my concerns were limited. The day following the debridment I simply wanted to stop vomiting. I also wanted relief from the high fever I had caused by MRSA. I was very sick but not rattled. I knew I would recover. I was not going to die.  

I am haunted by my experience in the hospital. I am not haunted by my physical recovery which was in indeed long, expensive, and was without question the most difficult period of my life. I am haunted by the way a physician treated me. In the middle of the night a hospitalist I had never met examined me. I had a high fever and had been vomiting for hours on end. In the Hastings Center Report I wrote about what took place. The physician asked me:

“if I understood the gravity of my condition. Yes, I said, I am well aware of the implications. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.”

The litany of disaster is all too familiar to me and others with a disability. But even this did not bother me. It was merely the build up to an offer to end my life. I was told  “the choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed. I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.”

My experience is directly relevant to the debate about assisted suicide because I was not in any way terminally ill. Yet a physician deemed my life not worth living. Disability in this physician’s opinion was a fate worse than death. Three years later I remain shaken. I am shaken because people with a disability who publicly express a desire to die are all too often accommodated. The request is perceived to be a rational response to disability. Thus what I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We are well equipped to deal with normal bodies and routine illnesses. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it.

I realized that fateful night my existence was not valued. I knew I had to justify why I had the right to live. I asked my extended family to visit me at all hours of the day. I had someone put in my chart that I was divorced, had a son in college, earned a PhD from Columbia University, and published in many peer reviewed journals. I did not do this to brag but establish my worth as a human being. Worse yet, I am not alone. This experience shattered my confidence. For a long time I felt ashamed. I wondered was the physician correct? Did my life lack value? Was my desire to live selfish? I did not tell anyone about what took place for over a year—not my family friends, or colleagues. The shame I felt was deep rooted. Eventually I told a former lover who told me I had to write about why took place. I did and it was a gut wrenching experience. I am deeply gratified the Hastings Center chose to publish my essay about what took place. The most gratifying aspect of writing about my experience was the response. Hundreds of people have written to me who either witnessed or had comparable experiences. So please listen to me very carefully. All the safe guards in the world that accompany assisted suicide legislation are inadequate. These protections are an illusion in a world dominated by physicians such as the one met. 

Humor Escapes Me: Limping Chicken Takes a Piss

I am still upset about the fraudulent interpreter at the Mandela memorial service. Unsavory details are  being reported about the man in question. I have no idea if the news being reported is correct. Among the conjecture being reported is that he was supposedly hallucinating at the time and has a serious mental illness. Rumors suggest that ten years ago he was charged with murder. These facts are of interest and important but it is far too early to separate fact from fiction. I am sure scholars such as Lenny Davis who has studied mental illness from a disability scholarship approach and has written extensively about deaf culture will follow this story. What is of interest to me is the public reaction to the incident. The fraud has become the fodder of late night comedians her and abroad. I saw Stephen Colbert mock what took place. I was not impressed. Sorry but I find absolutely nothing funny about what took place in South Africa. All I can think of is the few deaf people I know and how they struggle to communicate in the hearing world. I wonder why is ASL not taught in every elementary school in America? Most importantly, why has the fraud become a joke?

Donna Williams at the Limping Chicken has a post in which she too sees nothing funny about what took place. Link: http://limpingchicken.com/2013/12/14/paul-whitehouse-fake-interpreter-comedy/ Williams took the British comedy awards to task. According to Williams, "Paul Whitehouse picked up an award for Best Sketch Show for ‘Harry and Paul’, and congratulations to him. Where he went wrong was when he arrived on stage, announced that he ‘had brought his signer with him’ and proceeded to give his acceptance while an actor pretended to interpret next to him, fake interpreter style." This is not funny. It is ignorant and I find nothing funny about ignorance. Williams deconstruction of this skit and its larger social significance is spot on. I urge readers to follow the link above. Williams writes no humor was involved: 

Because having someone standing there, pretending to sign, is taking the piss. And not in a good way. Every day deaf people who use sign language have to put up with discrimination and hearing idiots taking the piss. The people laughing have clearly never had to deal with random hearing people who thought they could sign after a few drinks, and got confused and upset when I had no clue what they were saying – shouldn’t I be able to understand them, they were signing?! Most deaf people I know have similar stories; meeting random hearing people – drunk and sober – who thought that waving their hands about constituted structured language. That’s not to mention those who just wave their hands about in a mocking manner and laugh in our faces. As should be obvious by now, sign languages are ‘real’ languages with grammar, structure and syntax. It’s not waving your hands about. Maybe I’m missing the joke. Clearly, the joke was directed not at sign language and deaf people, but at the lousiness of the ‘signer’ who somehow, incredibly, managed to find himself on a world stage. That’s hilarious, right?

Again, there is nothing funny about what took place. I cannot and will not celebrate ignorance.  Now I may not use the term correctly, I am not up on British humor, but I like the line "take a piss. So for those that find humor in this story go take a piss.

Why Disability Rights Remains An Uphill struggle

As many people know, at Nelson Mandela's memorial service in South Africa a fake interpreter was present. I leave it to others far more familiar with sign language and Deaf culture to detail what took place and why.  Suffice it to say I was dismayed--shocked really that such an obvious fraud could take place. In following this story I was equally shocked that the Today show would make a joke about the incident. I will admit I do not understand the appeal of morning television programs. I am a morning person and wake up in the go mode. The idea of sitting in front of a television in the morning is foreign to me butI know morning programs are big business.

Yesterday the the hosts of the Today Show were discussing the fraud that was perpetrated and a person popped up in the corner of the screen and began making mock sign language gestures.

How could a bland morning show such as the Today Show geared to appeal to all Americans mock such a fraud. I will give the hosts credit. Within seconds they knew the so called joke was tasteless and wrong.



The Today Show tweeted an apology immediately. "We aired a joke in our 9:00 hour that was offensive. We apologize to our viewers." Apology accepted. Yet I cannot get past the fact someone at the Today Show thought this was funny, put thought into it, found a person to perform fake sign language, created a round bubble to input into the program. This takes a good bit of work. Someone employed by the Today Show thought this was funny. I cannot get past this. A fraud stood next to world leaders and the Today Show thinks this is funny?  To me this is an indication that the public at large thinks disability rights are nothing more than a joke.

I suggest readers go to Feminist Philosphers and read Teresa Blankmeyer Burke post "Defer to the Deaf Person: Interpreters and Quality Control". Link: http://feministphilosophers.wordpress.com/2013/12/11/defer-to-the-deaf-person-interpreters-and-quality-control/ The implications of a fraud such as the one in South Africa has a profound impact on deaf people. Quality control is a major problem in Deaf Culture. While I have seen this first hand myself Teresa has told me one horror story after another in her struggle to effectively participate in the academic field as a deaf scholar.  She refers to a term I have never heard--"Bad Fit to the Assignment". I translate this into a failure to communicate and lack of interest in having deaf people participate. Another variable is cost. Qualified interpreters are not cheap, especially interpreters who work with deaf philosophers and academics such as Blankmeyer Burke. This problem however is not financial but cultural. To provide effective interpreters requires academia to become allies with deaf scholars, acknowledge their expertise, and rely on the fact they know best how to be accommodated. Based on my limited experience this reasonable approach suggested by Blankmeyer Burke is not going to be instituted for a very long time.

Timothy Bowers and Ingrained Disability Based Bias : Part Two

Thanks to a Facebook "friend" I came across a blog post that echoes what I just wrote.  I somehow missed this post as it appeared November 18.  I urge you to read "Thoughts on the Tom Bowers Tragedy" at the Squeeky Wheel. Link: http://thesqueakywheelchair.blogspot.ca/2013/11/thoughts-on-tim-bowers-tragedy.html 

Here are two excellent quotes: 

It is disturbing how quickly the newly disabled are presented with a bleak picture, made to feel like a burden, and never given a chance to consider that life in a wheelchair does not have to mean the end of a valuable life. The problem in society is that it carelessly allows people to believe that it is the end, no questions asked. The “no one would blame you if you want to die” attitude says “Yeah, I don’t see the value of your life either” and people with disabilities can extinguish their lives unchallenged. We believe what we are taught, and we are taught to expect empty lives when we become disabled. I do not feel angry at Bowers for his choice, but I do feel angry at the world he lived in for making him feel like that choice was only natural.

I hope that one day there will be no more stories like this, because we will know how much we are loved and valued no matter what our physical abilities may be. That we will not have to be afraid of how others will see us once we become disabled. That we will go forward knowing that we are entitled to a valuable existence. And no one will be hastily allowed to die because no one gave him or her a chance to learn how to live again. 

In recent weeks I have struggled mightily with a gut wrenching loneliness. Some of this was personal and I will no longer mention this aspect of my life. To do so could cloud larger points I am trying to make.  As of today my loneliness is directly related to my disability. I have reluctantly concluded that despite three decades of demonstrating my value as a human being I will never be perceived as such. Dehumanizing and degrading experiences and disability go hand in hand. I remain stunned by what took place at William and Hobart Smith. This experience and the hundreds if not thousands of others like it have proven to be like a cancer in my soul. It just eats away at me every day. If scholars do not understand the broader ramifications of disability, if scholars dismiss the lack of wheelchair access as a problem or mistake is it reasonable to expect  society at large values my existence? In a word no.  This emphasizes just how alone we people with a disability are. By alone in this context I mean our existence is of little value. Bowers paid the ultimate price for this cultural bias. 

Timothy Bowers and Deeply Ingrained Disability Based Bias

Last month I wrote about Timothy Bowers who died within 24 hours of sustaining a devastating cervical spinal cord injury. Mainstream newspapers dubbed him the deer hunter as he fell out of a tree stand.  Like many people with a disability I found the circumstances of Bower’s death deeply upsetting. Equally disturbing was the way the end of his life was framed by bioethicists--they hailed Bower's death as being a paragon of patient rights and autonomy. I expected Bower’s death would go viral. To an extent it did. There was an explosion of articles published a few days after Bower died but the stories went no further. Indeed, Bower quickly became newspaper filler. What all reports failed to dele into was the fact Bower’s death was highly unusual. It is not every day a person experiences a spinal cord injury and at the family’s request is removed from a medically induced coma. Upon consciousness Bowers was told of his condition and a grim portrait of his future was drawn—he would be a vent dependent quadriplegic, likely live in a nursing home, he would never hold his soon to be born child, and that the quality of his life would be quite poor. The message was not subtle: death was preferable to life. 

This week two stories have been written about Bower’s death. Richard Senelick published an article, "Reconciling Life and Quadriplegia" in the Atlantic. Link: http://www.theatlantic.com/health/archive/2013/12/reconciling-life-and-quadriplegia/281821/#comments Senelick is a neurologist and medical director of Rehabilitation Institution of San Antonio The second essay I found, "The Misguided Notion That Life with a Disability isn’t Worth Living" was written by Tiffany Carlson. Link: http://blog.easystand.com/2013/12/life-disability-isnt-worth-living-misguided-notion-wont-go-away/

There is no question that a cervical spinal cord injury is devastating. There is no question that life as a vent dependent quad is very difficult and expensive. These observations do not imply a very good life as an upper level vent dependent quad is not impossible. I have known a number of men and women who have lived such a life. They got married and divorced. They had jobs and many earned an advanced degree. I would consider these people ordinary; but they are ordinary only because adequate social supports exist. I certainly never questioned the quality of their life. This is exactly what Bowers family did. It is exactly what the physicians in charge of his care did. It is exactly what bioethicists did applauding Bowers supposed autonomy. This is ethically objectionable and grossly misleading. It is a threat to my existence and every paralyzed person. 

Let me inject salient facts that have been ignored. Do not trust me. I have a PhD not an MD.  Here is what Richard Senelick stated:

In this case, we have an acutely injured man who was under sedation in order to tolerate his ventilator. Paralyzed and intubated, a patient can usually only respond with head nods or eye blinks. Even if the sedation is discontinued, it would be difficult to have a detailed and meaningful conversation about what it means to be paralyzed and on a ventilator. If you are trying to make a decision on whether to live or die, you should have access to detailed and accurate information about your condition. It is not easy to make a “rational” decision in a highly emotional situation, but you must try.

What people fail to realize is how biased people are against disability—especially any disability that requires a vent. When I use the term people I am referring to the public at large and every health care worker. Put yourself in Bower's situation. You go out hunting and wake up with a vent in an ICU. I do not think it was humanly possible for Bowers to make a rational choice. I have been in many an ISU as a patient. It is a technological wonderland where day and night merge. Sensory deprivation is extreme. All patients are heavily medicated many of whom are at the end of their life. This was not the place or time for Bowers to make a decision to live or die. 

Carlson gets to what is not said in an ICU or other hospital settings. She wrote: 

No one should ever assume someone with a severe spinal cord injury would rather be dead than alive, but most people who are able-bodied assume this, even medical personnel. All should be leaving their bias at the door instead.

Carlson is hopelessly naive. Bias exists in every hospital in the nation. Mistakes happen and even highly educated people can be bigots. In my opinion hospitals are among the most hostile institutions when it comes to disability based bias. We people with a disability represent the limits of medical technology and the ability to cure a host of disabling conditions. We are thus symbolic failures. Worse yet, we require more labor. We also require advanced technology that is expensive. This is a recipe for death and disaster. And this is what happened to Bowers.  He needlessly died and was given the illusion of choice under impossible conditions. I know all about this as a hospitalist once suggested to me  death was preferable to a long and arduous recovery.  Carlson maintains: 

most people would rather die than live with a spinal cord injury, even doctors and nurses think these things in secret. They shouldn’t be blamed for thinking these things, but they shouldn’t let their opinion on the matter influence what they tell family and friends of the newly injured. You have no idea “what’s worth living” until you’re in the reality yourself.

Again, Carlson is naive. But she does have a point. Bias is unacceptable. Bowers death is a sad example that bias can be lethal. Senelick drives home this point at the end of his article. 

We are on a slippery slope when we quickly make the assumption that people with severe disabilities would not want to live and could not experience quality in their lives. It is very dangerous when society views the severely disabled as not worthy of the same treatment of the able bodied. Every day we pull out all the stops to treat an elderly person with a heart attack, but then assume that someone who is paralyzed, in a wheelchair and on a ventilator could not possibly live a “quality” life. That was the assumption made by the people in Indiana.

I am regularly accused of being bitter and angry. Bitter I am not. Angry yes. I not angry about my disability. If anything I am quite proud of my body. I am angry about social injustice. I am angry about disability based bias that hampers my ability to lead a good life.  I am angry that almost every time I travel or leave my home it requires advanced planning and all sorts of mental gymnastics on my part must be performed. Spontaneous actions are impossible in the land of disability. Our physical and social environment is designed for bipedal people. Problems abound as do mistakes. Oh how weary I am of this line of reasoning. To label barriers of inclusion as  problems and mistakes  is wrong and undermines all efforts of disability rights activists and scholars. The social and physical barriers I encounter are a civil rights violation. My existence is a problem and mistakes are made because my presence in not wanted.  I really do not want to hear it. I do not want to engage with others unless it is done on an equal plane of existence. Lives are at stake. Bowers death proved this. 

Is it Possible to Have a Jackie Robinson Pee Wee Reese Moment

The history of baseball is filled with grand tales. One of the grandest is the Jackie Robinson  Pee Wee Reese embrace. In 42  that I wrote about yesterday the Jackie Robinson Pee Wee Reese moment is dramatized to great affect.  For those unfamiliar with baseball lore, Robinson had encountered shocking abuse from racists. As baseball lore has it, Philadelphia and Cincinnati were particularly racist cities. Robinson was subjected to particularly intense racist hatred. Robinson was supposedly at a low point. Pee Wee Reese was from nearby Kentucky and a southern white man. Many of his friends and even family members were angry he would play on the same team as a black man.  Hard to imagine today, but the divide between the two men at the time was perceived to be great--think Grand Canyon. The two men were not close friends but respected each other.

In 2013 there is nothing unusual about this photograph of two ball players. When Jackie Robinson broke into baseball this image was shocking. In the film 42 the build up to the so called Jackie Robinson Pee Wee Reese embrace was long, dramatic, and accompanied by soaring melodramatic music. In the film Pee Wee Reese walks from short stop and across the infield to Jackie Robinson at first base. He puts his arm on Robinson's shoulder and the two men have a short chat. This changed baseball history and the way race was perceived in the United States. The cultural logic was simple: baseball is America. If baseball can be integrated all of America can and should be integrated.

Exactly what happened in Cincinnati is unknown. What is depicted in the film 42 never took place. I am happy to let baseball historians argue about this. The details are not important. What is important is the moment in time.  Something important took place. Even Pee Wee Reese, Jackie Robinson and Rachel Robinson do not recall the details of what happened.  The important point is that it could have happened in any American city in 1947. Think about that. Let that settle in your brain and ruminate about that for a while. Think about Jim Crow laws, white only bathrooms, colored people sitting in the back of the bus. These thoughts make me shudder. I cannot imagine this world, a world my parents came of age in. In one biography of Robinson he recalled:

Pee Wee kind of sensed the sort of helpless, dead feeling in me and came over and stood beside me for a while. He didn't say a word, but he looked over at the chaps who were yelling at me and just stared. He was standing by me, I could tell you that.

When I saw 42 I was deeply touched by this moment. And this is the power of folklore and film making. Mix a real life event, an ordinary event even, with great ideas and in this case the civil rights of all black people and you create history. Based on my knowledge of baseball history, average at best, the people involved are not as important as the story that is repeatedly told. Ask any American child about Jackie Robinson and they can retell this story. At the end of his life Reese did not like the fact he had been made out to be a hero. I cannot blame him. If there was a hero involved it was Robinson. I shudder to think of the racist abuse he endured. But like Reese, Robinson was not a myth but a real life human being. Robinson's widow Rachel recalled her husband mentioned Pee Wee Reese's gesture that day and recalled "It came as such a relief to him, that a teammate and the captain of the team would go ut of his way in such a public fashion to express his friendship." 

As I lay in bed this morning waiting for the sun to rise I realized why this event has been stuck in my mind. I have never had people publicly support me or my civil rights. Of course individuals have shown me great support. As I thought about that scene in the 42 I realized I was experiencing multiple primal feelings. I was deeply jealous. Like Robinson, for a while I have felt "dead inside". An overwhelming sense of helplessness has over come me in recent weeks. I have come to the conclusion I as crippled man will never have a Jackie Robinson Pee Wee Reese moment.  I will never be equal. I will forever have to defend my civil rights and demonstrate my life is worth living.  Worse, this life long battle will be mine and  mine alone. The ADA is simply not widely understood to be civil rights legislation. Until this changes real equality will remain illusive. No wonder as the holidays approach my mood is grim.

42 The Jackie Robinson Story, Disability and Loneliness

I find a host of black American writers inspiring. I am particularly drawn to Richard Wright, author of Native Son and Black Boy. However, it is Ralph Ellison's searing book  Invisible Man that is hands down my favorite. I have read Invisible Man many times.  One quote stands out and in my well worn copy it is highlighted in yellow and underlined in pen and has large stars around it: 

I am invisible, understand, simply because people refuse to see me. Like the bodiless heads you see sometimes in circus sideshows, it is as though I have been surrounded by mirrors of hard, distorting glass. When they approach me they see only my surroundings, themselves or figments of their imagination, indeed, everything and anything except me.

People never see me. People see a wheelchair. From there they make all sorts of leaps in logic, none of them positive. Tragedy. Illness. Incompetence. Lack of ability. Cognitive impairment and physical impairment. Sadness. Bitterness. Anger. Asexual. Weak. Unemployed.  I need not open my mouth for people to leap to conclusions about my life. The fact none of the assumptions made about me are remotely correct means nothing. As Ellison wrote, the version of me that others create is distorted. When it comes to imagination and disability the results are always negative. I can never stack up to the almighty and powerful bipedal individuals that look down on me and judge my life as not worthy.  There are days I cannot take this. There are days I cannot leave my home. I cannot bring myself to educate the ignorant masses that routinely accost me. There are days when I cannot battle. I have had too many of these days recently. I am not happy and dread the so called holiday season. There will be no cheer in my house. I have no interest in seeing my family. I have no interest in spreading good cheer. I doubt I will unpack the holiday decorations. I see no point in making myself more miserable. I will forego a Christmas tree this year. I will do my level best to avoid people from now until after January 1. Every year it is the same. During the month of December everyone is eager to "help" me.  I am repeatedly told it is "good to see you out and about" as though I am a charity case. 

In an effort to cheer myself up I watched 42 The Jackie Robinson movie last night. Like the vast majority of sport movies, it was not very good. There were a multitude of factual errors. Despite the power of the Robinson's life story the movie was formulaic and overly sentimental. Far superior films exist such as Ken Burns Baseball. Like most Hollywood films, 42 is overly dramatic and covers well known ground such as Pee Wee Reese public embrace of Robinson. 42 does not let the facts get in the way of a a good story. Despite its flaws I liked the film. Robison is obviously the hero of the film--"superman" according to Branch Rickey. This characterization is double edged sword. Superman has feelings and the film demonstrates what a lonely struggle Robinson had. Yes, he had the support of  his wife, Branch Rickey and others, but the taunting and gross prejudice he experienced, the vitriol directed at him was nothing short of horrific. I have no doubt he felt very much alone and worse knew he could not reply in kind. This touched me because I have been dealing with a profound sense of loneliness. The sort of loneliness that eats away at your heart and causes a pain so indescribably difficult words fail me. I can relate to what Robinson experienced. Every where I went this semester a spectacle was sure to follow. A speaking podium that was taller than me. A speakers stage with no ramp. An entrance to a hotel through the luggage room. Side entrances to prestigious buildings that are filthy and in some cases dangerous. Inaccessible bathroom galore. Bars with tables that are well above my head. Wheelchair logos and signs that lead me nowhere. What is one too do? Like Robinson, I cannot fight back in kind. I cannot express my outrage in no uncertain terms. I am forced to be polite at all times. I am not an individual I am the exemplar for all disability. If I am bitter all people with a disability are bitter. If I get angry all people with a disability are angry.  It is a classic Catch 22 situation.

So what does a depressed and lonely bad cripple do? Well, thanks to my former lover and the recent purchase of a trainer I ride my handcycle. It is too cold to ride outside. I tried that this morning. Big mistake at 22 f.  It is just not safe to ride my handcycle at this time of year. I am very low to the ground and cars are not expecting to see me or any other bike rider for that matter. So where do I ride? My handcycle is smack dab in the middle of my living room. Here is the evidence.

One last quote from Ellison that illustrates the dilemma I am facing: "Perhaps to lose a sense of where you are implies the danger of losing a sense of who you are.”  That my friends is where I am at. I do not know where I am or who I am.  It would be an exaggeration to suggest my life is at a cross roads. I will endure, I am a survivor. I demonstrated that as a morbidly sick kid. I demonstrated that when I was bed bound and dependent upon my family in 2010.  I am lost and lonely as of today. Who knows what tomorrow will bring.  Hard times indeed but I am hopeful for a great 2014. 

Lovely Video and the Disabled Body

My body is unique. My left hip dislocated 40 years ago and as a result my left leg is about two inches shorter than my right. I have a severe scoliosis and thoracic spinal fusion. The skin on my back is distinguished by faded long rail road track surgical scars. My curved spine is not getting worse but it certainly is cork screwing my body to the right as I age. There is not a single symmetrical part of my body. I am all odd curves and mismatching body parts. When I swim or simply take off my shirt people stare at me. I do not mean a passing stare but flat out rude prolonged stare. I do not feel like a freak but many strangers think this. The irony to me is I am in very good physical shape. I am slender--a whopping 143 pounds. I am strong--strong in the sense I am built for endurance and long handcycle rides. Put me in a weight room and I will become instantly bored and capable of lifting little weight compared to other men. I am a man of motion. Movement is a constant.

I am pleased with my body. It has served me well. I hope to die with a battered body, one that was used to its fullest extent. I rail against physical loss as I age. Getting from floor to wheelchair was once a simple process when my son was a boy is now exceptionally difficult. I suspect my hearing is getting bad. I tire more easily as steep hills take me a while to get up.  All in all though I have fared well. This thought process is out of the norm. Many people with disabilities struggle with their body image. I get this. Our bodies are perceived as deformed or defective and are routinely medicalized. Here is where I really depart from the norm. I find disabled bodies attractive. Culture is inscribed on our bodies. I have seen many disabled bodies. I find scoliosis fascinating. I see a man or woman shirtless with a profound scoliosis from behind and think their body is gorgeous. A profound scoliosis is  akin to a tree that has grown in an unusual fashion due to environmental variables. I find amputees and the residual limb equally interesting. All disabled bodies have an element of beauty to me. This point was reinforced today when I saw the below video.



I love this video.  According to the Huffington Post the video was created by Pro Infirmis. What resonated with me was how much the people with a disability enjoyed the process of having their body duplicated in mannequin form. Even better was the fact the mannequins were put in store windows in Zurich to celebrate International Day of Persons with Disabilities. I do not care one iota about the reactions to the mannequins by the general public that walked by. I experience those sort of reactions daily. I care about the people with a disability that got to celebrate and enjoy their body. This is all too rare. Remarkably, I even like the title of the video: "Because Who is Perfect? Get Closer". No human is perfect. No body is without flaws. Like the other people in this video my body is simply different. In that difference I see great beauty. I wish others thought the same way.

Ritual Humiliation in the Hospital

Hospitals are total institutions. They operate much like a prison, nursing home, military base, or university. Every aspect of life is controlled. Erving Goffman did sociological field work in mental institutions. He was not impressed. No institutions are impressive. Institutions violate our deeply ingrained and highly valued sense of autonomy. When one's life is controlled by a total institution options may or may not exist. At issue is the measure of control. Do not buy into the jargon spewed by those that work at institutions--the core issue is always control. At a military base or prison the control is extreme and obvious. All wake up at the same time. All eat at the same time. All go to the bed at the same time. A hospital is not much different. Once admitted to a hospital, a patient has no control over their life and liberty. Choices exists but they are limited. One is given an ID bracelet--an identity marker at multiple levels symbolically and practically. Time slows down. Control of your time, when and where you will be seen is not possible. You are at the mercy of the vagaries of the system. Violate that system and you are branded a "difficult" or "noncompliant" patient. If you earn this designation you are going to get inferior care. Compliance is expected. You have a role in the institution. Your job is to get better and do as you are told. Do not violate this dictate. To do so not only earns you inferior care but puts your life at risk. Do not fool with the powers that be. You can easily be shipped out to a far less pleasant place. You can find yourself heavy medicated and in a drug induced stupor. Institutions calls this chemical sedation or chemical restraint. Yes, we no longer tie people to the bed or their wheelchair nor do we perform lobotomies on the mentally ill. We drug people into silent oblivion. Control and the never to be changed highly valued schedules rule.

These thoughts have been coursing through my mind because of a photograph a reader sent me. I was stunned. In a hospital symbols abound.  Obvious social markers at a teaching include the archetypical long white coat. Some symbolic markers are objectionable. For instance, I was at a hospital facility in Syracuse and noted physician ID tags had the large word "DOCTOR" in bold black ink added to their ID tag. One might as well put the word GOD on the ID. Negative symbolic markers  exist. Here is a perfect example

This tag was placed on a Bad Cripple reader at an emergency room. The man had a spinal cord injury. This tag has a single use--to further spoil the identity of the man in question.  Erving Goffman wrote about spoiled identity in his classic 1963 text Stigma. Goffman noted that there were three types of stigma: physical identity, group identity, character identity.  We people with a disability are saddled with all three forms of a spoiled identity.  What the "fall risk" bracelet does is separate this man from the possibility of normalcy. Goffman would have labeled the bracelet a dis-identifier. In the institutional setting of a hospital this man is physically and socially problematic. He is a physical risk to himself and as such requires more work--often hard physical labor. He might need to picked up if he fell. He might be injured if he fell. The worst part of this sort of dehumanization is that the man cannot complain. Normal people, the health care staff, are the power brokers. The patient is powerless. He or she must defer to the power and hopefully kindness of expert others. Other here refers to any "normal" person, staff or visitor. Staff expects this man to be compliant and not complain.  Can you imagine what would happen if this man objected and tried to explain the symbolism involved?

When a person with a disability enters a hospital he or she encounters a hostile environment, one that is likely grossly inaccessible. Ironic, eh. The infuriating thing is any effort to change the social structure of the institution is domed to fail. The second you cross the threshold and enter an institution you have relinquished control to others. When in a pissy mood I upset the expected balance in institutions. I have been given detailed informed consent forms seconds before a procedure and with a straight face I tell the uninformed health care worker that I will need at least 30 minutes to review the form. When I have been admitted to a hospital and when weary of the endless irrelevant questions that drone on I will insert inappropriate replies. For instance, when one gets to "hearing normal" I repeatedly say what. It usually takes at least six "whats" before the health care employee catches on. I am guilty of being subversive. Frankly, I thrive in an institutional setting. I am a master manipulator. I think most people that have gone through the medical mill learn how to be subversive. It is the only way to assert your humanity and lessen the control an institution has over your life. The fact is the more you are liked the better your care will be. I saw this as a sick child. I saw this as a sick adult.  This is a social skill that every person with a disability must hone as if their life depends upon it for I learned in 2010 one's life does indeed depend upon being perceived by health care workers as possessing a life worth living.

Stupid Ideas that Ignore Real Problems

Travel when one uses a wheelchair is needless difficult. Airlines are rude to all people but the industry has a deeply ingrained bias against all people with a disability--especially those such as myself that are paralyzed and use a wheelchair.  More generally, accessing any form of mass transit is inherently difficult for most people with a disability. As one who has traveled a lot in the last four months it is easy to conclude the vast majority of people who are not disabled or know nothing about disability either do not care or are at best disinterested. Not my problem I suspect is the prevailing sentiment. In this void a market exists for designers. How can a wheelchair be changed to fit the existing world constructed for bipedal people? Well, the most recent silly and useless invention that has been floating around the internet for a while is the folding wheelchair wheel.

 
This folding wheel is being hailed by many. Apparently people with a disability were very vocal and interested in a folding wheel. I do not know any of these vocal people. Indeed, I have sent a photograph of the folding wheelchair wheel to my paralyzed brethren. All thought the idea it was useless and failed to address the real problems we encounter when trying to access a plane, train or bus. Regardless, proponents of the folding wheelchair wheel state:

Getting from A to B in a wheelchair is enough of a challenge in itself, without considering the hassle of stowing the chair away each time its user wishes to travel by car, plane, or train. The Morph Wheel aims to make life a little easier in this regard, by providing a wheelchair wheel which folds into almost half its original size.

Not considered: Why is traveling for people that use a wheelchair a challenge? It is a challenge because the presence of people with a disability is an odorous burden to the airline industry. A folding wheelchair wheel takes up less space. It supposedly fits in the onboard luggage bins of an airplane or under a seat. This is great but I sincerely doubt time pressed and dare i say hostile airline employees will let a person with a disability put the wheels under a seat or in a luggage bin. Honestly, can you imagine showing up with this large black bag at an airplane gate and expect a positive reaction? 

How exactly am I going to get the not so small wheels depicted in the over head luggage bin? A friendly airline and helpful employee? I doubt it. The assumption here is that no person such as myself could fly from point A to point B alone. What about the wheelchair frame. Where is that going? Not under the seat. In the luggage bin? Not a chance. Oh, and forget a carry on bag. One to a customer.  This invention creates as many problems as it supposedly solved.

What draws my ire is the praise the folding wheelchair wheel is getting. Technology types and designers are lauding it as being a remarkable and important invention. This is not a surprise to me. History is littered with bad ideas and even worse designs that are supposedly wonderful for people with a disability. Rampant anti disability bias is the real issue. The problem is social. My presence is unexpected and unwanted. I take up too much space in a word designed for bipedal people. The answer is not to change whatever adaptive device I use but rather construct a social and physical environment in which all people with a disability are valued. Twenty-three years post ADA physical access remains an afterthought. The lack of logical and flawless inclusion has social consequences. I do not navigate throughout an airline terminal easily. I do not enter a building up a set of steps. I get into buildings through side doors or worse. Much symbolism is involved here. It is easy to conclude my presence is unwanted. And that my friends is  a social failure all the folding wheelchair wheels in the world cannot solve. 

The SDS Has a Problem: Will they Respond?

I am not a fan of the SDS (Society for Disability Studies). I should enjoy going to SDS meetings but I do not. I have been to two SDS meetings and did not enjoy either meeting. The meetings completely and utterly fielded to resonate with me. I know people who are actively involved in the SDS and I respect the fact they get much out of their involvement. I am not one of these people. In fat I am very critical of the SDS and two years ago I took the SDS to task on this blog. See: http://badcripple.blogspot.com/2010/05/academic-conferences-who-can-afford-to.html

Two critical essays about the SDS have been published in the Feminist Wire in the last few days. The most recent article by Corbett Joan O'Toole is devastating.  See: http://thefeministwire.com/2013/11/op-ed-cha-ching-economic-barriers-in-disability-studies/ O'Toole's essay is devastating because it is so basic. All you need to know is the basic math:

Conference registration: $230

Hotel room (3 nights at $159 * 17% for tax and lodging fees): $558

Airfare (roundtrip): $325

Transportation from airport to hotel (round trip): $54

Food (hotel restaurant per day * 3 days minus conference meals): $90

Required costs for this conference: $ 1,257

These are conservative numbers, particularly the food costs.  But often that is the only place where I can cut costs. So when I attend a conference, I eat as little as possible outside of meals covered by registration, and I bring food containers from home to save part of each meal to eat later. On the first day I find a local store and purchase drinks and nonperishable food to stretch my money.  Hotels are rarely near grocery stores so I am usually paying for overpriced, highly processed foods.

I do this not because I want to. I do this because I am poor. I am a Disability Studies scholar. And like many other disabled scholars, I am poor. I receive $1,100 a month in government benefits and a pension from when I worked.  Soon my pension ends and I will live on $810 per month.

There is no need to read the rest of O'Toole's essay. The economic reality cannot be ignored. Adaptive sport programs encounter the same problem as the SDS: it is extremely expensive to participate. I would speculate the SDS and a typical adaptive sort center is beyond the budget of 90% of all people with a disability. Both the SDS and adaptive sport programs have the same response to economic reality: scholarships are available. Sorry but no. A scholarship is of no help to most people with a disability whose primary concern is putting food on the table and paying rent. To participate costs money. To participate involves transportation.  When one lives on $810 a month as O'Toole does the SDS or a adaptive sport program is a pipe dream. O'Toole calls this a "dirty little secret". I call it exploitation. The SDS exploits the very people it studies and supposedly advocates for. But there is very little advocating going on at the SDS. Indeed, the only advocating I have seen in my limited exposure is individual career advocacy. This is a nasty mean spirited comment. It is also true.  We are talking about the tacit acceptance of economic gate keeping. O'Toole calls this economic ableism. Ouch! We are talking about class. Only the privileged and elite can afford to attend the SDS. Those with tenure, those who hope to get tenure, and those that want to enter the field participate. The people who do not attend accurately represent the disability norm. Poor, unemployed, socially isolated, economically deprived. In a word, disenfranchised. O'Toole who really nails it when she concluded: 

When economic barriers create a Disability Studies without a majority of publicly identified disabled people, it is an oppressive enigma wrapped in a conundrum hidden beneath a patina of deceit.

It is not often I can say this: I wish I wrote those words. I am sure the SDS leadership is not happy. I am sure they will correctly state we are a professional organization, all such organizations must charge fees and we do more than most to provide scholarships and be inclusive. Hell, I bet an SDS committee is being formed. Meetings will be held. A response will be drafted. Blah, blah, blah, blah... The real problem with the SDS is it has no soul. Forget the famed SDS dance. Forget activism. The SDS is an intellectually isolated silo. The SDS is a social and academic network that is devoid of interest or relevance to the vast majority of people with disability. This is a disgrace. Paul Longmore would be horrified. Ed Roberts would be appalled. Longmore's work went well beyond disabilities studies scholarship. His work was rooted in activism and he railed against the social and economic forces that oppress people with a disability. He was the soul of the disability rights movement. Hey, this is not an original observation. Look at the cover of Longmore's classic Why I Burned My Book. This is John Hockeberry's line. 

John Kelly, a real activist and scholar who I deeply respect, asked me today what can be done. I pessimistically replied nothing. I observed online formats will not work because people are inherently social. We need to see and meet each other--break bread and share a meal.  There must be a solution. Here is what I propose. I suggest we create a nation disability rights day. We can call on each and every independent living center, disabilities studies program, national organizations such as ADAPT, NDY, DREDF, and many more. All people with a disability meet and advocate. Practice various forms of civil disobedience. Be confrontational. Be direct. Support those with no support. Go to a nursing home. Go to a group home. Support those with no support. Do not do this for your career. Do this because it is is the right thing to do. Do this because your life depends upon it.  Even a grim man can dream.