I am Off to a Conference

I am heading to Washington DC today. I am giving a short presentation about the Carter Case. My focus will be on the larger ramification of a recent ruling in British Columbia. The meeting is organized by the American Society of Bioethics and Humanities. The ASBH has been kind enough to waive registration fee as it was way past my budget. I have never attended this event and am very curious about the papers to be presented and the way in which bioethicists interact. Perhaps I will be spending some time at the bar--I know this is where the real action takes place when anthropologists get together.

Below is my presentation:

Gloria Taylor had ALS, an undoubtedly devastating condition.  As Taylor lost the ability to move her body she told the press �I simply cannot understand why the law holds the able-bodied who are terminally ill are allowed to shoot themselves when they have had enough because they are able to hold a gun steady, but because my illness affects my ability to move and control my body, I cannot be allowed compassionate help to allow me to commit an equivalent act using lethal medication�.  Taylor is not the first person with a disability to make this argument.  In 1990 a Georgia court ruled that Larry MacAfee, a 38 year old quadriplegic, who was not terminally ill had the right to disconnect himself from his respirator and die. David Rivlin, also a quadriplegic, sought court intervention in his desire to die at approximately the same time. Unlike MacAfee, who changed his mind, Rivlin utilized court sanctioned assisted suicide. More recently in 2010 Dan Crews expressed a desire to die rather than be forced into a nursing home. In 2011 another quadriplegic, Christina Symanski, legally starved herself to death. The legal arguments these men and women utilized were compelling. As we have heard, Taylor argued that the provisions of the Criminal Code that prevented her from receiving assistance were inconsistent with the Canadian Charter of Rights and Freedoms that award all citizens the rights to life, liberty, personal security and equality. 

I would argue that the legal arguments presented by those people with a disability that express a desire to die share one larger and troubling cultural response: wide spread social support. These men and women are applauded in their effort to die. These people are brave!  We are eager to help these people in part because society celebrates and values personal autonomy and dignity. This is hardly an insightful observation. But it does beg the question�why do we support people with a disability that want to die? To me, the social support people with a disability receive in their effort to die via assisted suicide reveals a deeply ingrained stereotype that is not questioned. Here I refer to the fact we consistently fail to provide the necessary social supports that would empower people like Carter, MacAfee, Rivlin and Symanksi to live rich, full and productive lives.  Rather than discussing this failure the media and the court sympathetically nod their collective heads. We accept it as a given that no one would want to lose their dignity and autonomy.  Bluntly put, one is better off dead than disabled�a phrase that is used as a rally cry for disability rights activists who proudly proclaim nothing about us without us.

Of course few actually state a person with a severe disability is better off dead.  Instead we praise Justice Lynn Smith who relied on a host of scholars and experts from around the globe in rendering her opinion. For example, Peter Singer praised Smith and her decision in the Carter case noting it �could serve as a textbook on the facts, law, and ethics of assistance in dying� (Singer July 16, 20012).  Singer and others correctly observe Smith�s decision focused on at risk populations�the elderly and disabled�and concluded �the empirical evidence gathered in two jurisdictions does not support the hypothesis that physician assisted death has imposed a particular risk to socially vulnerable populations�. I could not disagree anymore. I also reject Smith�s conclusion that it is possible to design a system that permits assisted suicide and protects vulnerable populations. I object on two grounds: first, assisted suicide in a clinical setting will not be perceived as a criminal act. It will be thought of as an act of mercy. No doctor or health care professional will ever be prosecuted for assisting a person with a disability in his or her effort to die. Second, in Canada and the United States the larger bias against people with a disability carriers over and into the judicial realm. Disability theorists such as Lenny Davis (2002) have argued disabled plaintiffs are seen as narsisstic. The theory of narcissism as used by Davis reveals a central flaw of the disability rights movement: the primary problem people with a disability encounter is not a given bodily deficit, in the Carter case the inability to end one�s life, but rather society and the courts refusal to negotiate difference.  This refusal on the part of �normates� to use Rosemarie Garland-Thomsen�s awkward phrase makes requests by people like Taylor appear to be reasonable and establishes a double standard in terms of health care and end of life issues.

 Let me address my second point and the theory of narcissism. Before Taylor entered court it was assumed disability, especially one as severe as ALS, is a personal tragedy. Carter�s desire to die with or without assistance was perceived to be a reasonable response to her condition. This leap of logic is based on a very narrow definition of autonomy. Not surprisingly, the empirical evidence the court sought, specifically that the lives of people with a disability were less valued and at risk, was found to be lacking. I would counter how do you measure the value of a life and how do we define autonomy? Do we use the utilitarian logic of Peter Singer or address the literature produced by disability studies scholars who seek to broaden our understanding of life with a body well outside the norm? Smith correctly found that when dealing with end of life issues such as assisted suicide and withholding life support �a bright-line ethical distinction� was elusive.  In part an ethical distinction to borrow Smith�s words was elusive because there is a societal double standard in the way people with and without a disability are treated.  This double standard is based on a narrow perception of autonomy and calls into question why some people with a disability like Taylor want to die.  Here I think the statistics from Oregon�s Death with Dignity Act enacted in 1997 are revealing. Since 1997, 935 people have had death With Dignity Act prescriptions written and 596 people have died from ingesting the lethal medication. The most common end of life concerns have remained consistent, foremost among them: decreasing ability to participate in activities that made life enjoyable, loss of autonomy, loss of dignity, losing control of bodily functions, burden on family and friends, inadequate pain control, and the financial implications of treatment.

I am not terminally ill. Yet as a person with a disability I have felt and experienced each and every item listed. I cannot walk and have as a result lost a degree of my autonomy. There are activities I once enjoyed that I can no longer do that made my life enjoyable.  I have lost some dignity in the eyes of others. I have tenuous control of many bodily functions. I worry about being a burden to my son and extended family. I worry about the financial implications of my health care especially since I sit on a wheelchair cushion with a short life span that costs $500 and is not covered by insurance.  I have experienced severe pain that made me wish I were dead. Yet here I am deeply perplexed. Why is my existence and that of other people with a disability so easily called into question? Why does a request to die such as Taylor�s garner so much attention while budgets for social supports are slashed nation wide, cuts that are largely ignored?

I would contend that autonomy, however we define it, is fleeting, its loss hardly a tragedy. Thus I believe discussions about whether Taylor had the legal right to end her life with assistance is a smoke-screen that obscures the humanity of people with a disability. We need to keep our attention squarely focused on who wants to avail themselves of assisted suicide and why. The answer to me is obvious: people choose to die because they feel their life has no value. And whose lives do we not value--my crippled body, the elderly, terminally ill and those born with severe cognitive and physical disabilities that are deemed �incompatible with life�.  This calls into question how we define humanity. Do not be swayed by emotion. Let�s enter into a serious debate that is devoid of compassion.  This brings me back to the first point I raised�ending the life of a person with a disability, the elderly or terminally ill is unlikely to ever be considered a criminal act.  It will be perceived as an act of mercy, a compassionate and self less gesture on part of a physician. This thought keeps me up at night and makes fear accessing the health care system.

Earlier this year I wrote an essay about a chilling experience I had in the Hastings Center Report that I think calls into question the inherent dangers associated with assisted suicide.  I do not have the time to detail what happened but suffice it to say what took place was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. Health care systems are well equipped to deal with normal bodies. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word or am examined by a physician, 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. As a result it is all too easy to consider people with disabilities as the �other�. In the words of the noted anthropologist Robert Murphy we people with a disability are �the living symbol of failure, frailty, and emasculation, a counterpoint to normality� (Murphy 1990:1-2).  This sort of symbolism is difficult to empirically demonstrate exists for Justice Smith and proponents of assisted suicide legislation. What I can tell you is that when I see a person with a disability I consider their bodily and cognitive deficits not relevant. I see a person that has adapted and survived a hostile social environment.  I do not see an objectionable body but rather a person that has thrived and if people working within the health care industry were smart they would listen to what people with a disability have to say.

David Cameron's Distasteful Political Rhetoric

David Cameron, Prime Minister of Britain, gave a speech a few days ago that reinforced why conservative politicians here and abroad are contemptible human beings.  Cameron is under fire by the opposition party and his speech on October 10 was important.  Like Sarah Palin and Rick Santorum, Cameron is a skilled at using his disabled child for political gain. During Cameron�s speech his eyes welled up with tears when he spoke about his son. On many videos of Cameron�s speech the camera moves to his wife Samantha who also had tears in her eyes. It was great political theatre. I should note here the Cameron�s eldest son was born with cerebral palsy and epilepsy. He died in 2009 when he was just six years old.  Camerson stated the highlight of his year was awarding a gold medal at the Paralympics. Cameron stated: �When I used to push my son Ivan around in his wheelchair, I always thought that some people saw the wheelchair, not the boy. Today, more people would see the boy and not the wheelchair�and that�s because of what happened here this summer�.  This is a great line and it had the desired affect. It was well crafted and supposedly deeply touching moment, proof positive Cameron really cares about people with a disability. Too bad the emotional ploy is devoid of reality. What Cameron is hoping people forget or simply will never realize is that last summer�s Paralympian heroes are today�s scroungers.

Disability rights activists were quick to respond to Cameron.  For instance, Richard Hawkes, Chief executive of SCOPE, stated Cameron was �right to recognize how the power of the Paralympics could have an impact on attitudes towards disabled people. But attitudes do not change over night and disabled people have been reporting a decline in attitudes towards them for some time�.  This polite reply will have little sway on a toxic social situation for people with a disability. What Hawkes needed to say with force is that hate crimes against people with a disability are at historic highs in Britain. The number of hate crimes against people with a disability in Britain went up 33% in 2011 according to the Association of Chief Police Officers. There is no question the significant increase in hate crimes is directly related to Cameron�s effort to slash the benefits people with a disability receive. In fact some have compared the social situation in Britain to Nazi Germany in the 1930s. Atos, the French company hired to evaluate whether people with a disability are able work, and Cameron have made it clear people with a disability that do not work are lazy scroungers. Anti disability rhetoric abounds. Do not take my word for it, read Sue Marsh work at Diary of a Benefit Scrounger.

Marsh was quoted in the Huffington Post, UK that �It�s so frustrating that this man can stand on stage and lie�downright lie- about protecting disabled people. We are faced with the biggest onslaught disabled people have ever faced�.  Marsh went so far as to call Cameron�s plans to cut benefits a form of �Compassionate Fascist Conservatism�.  See the link:http://diaryofabenefitscrounger.blogspot.co.uk/

Also see Indigo Jo Blogs. See link: http://www.blogistan.co.uk/blog/mt.php/2012/10/10/camerons-speech-appeals-to-aspirationalism#more-3709

I hope voters in this country are paying attention. If Romney wins the presidential election he will wage a war on the poor, disabled, elderly and other vulnerable population groups. It will be a campaign of historic proportions and people will die. Too extreme a viewpoint? I think not as this is already taking place in Britain. The template has been created. Hate crimes do not exist in a social vacuum. People with a disability have cleverly been identified as scroungers�people looking for a government hand out. Of course legitimate people with a disability deserve benefits but not the scroungers too lazy to work. And who makes this determination? Atos, a company hired to evaluate a disabled person�s ability to work. Atos relies on a supposedly complex computer program and 15 minute interview to make their assessment. The explicit goal is to provide the justification to cut the benefits of people with a disability. It is what they have been paid millions to do.  Thus Cameron does not utter the word scrounger. He does not acknowledge the animosity and stigmatized identity people with a disability acquired�an unwanted identity he helped create. Cameron relies purely on emotion�he gives touching speeches, lets tears well up in his eyes and has a camera pan to his wife who is equally teary eyed. One and all are touched. This man cares! His son had a disability. He knows what disabled people are like. Meanwhile there is some person with a disability navigating the London streets; an average person going about their day.  There is no compassion for this individual as a passerby will scream �scrounger� at him or her. How bad is it for people with a disability? SCOPE reports that two thirds of people with a disability that contacted them reported being abused or demeaned, often by strangers.

Reading news accounts about the onslaught on disability rights and supports in Britain is depressing. For instance, yesterday I read the government plans to discontinue the Independent Living Fund, a supplement fund that enables 19,000 people with a disability to live independently. I just shook my head in wonder. How can anyone with or without a disability not realize how dangerous these cuts are? The odds are quite good that if you live long enough disability will become a major variable in one�s life. These cuts hurt not just people with a disability but all those that will acquire a disability. In short, it is in the best interests of bipedal people to support all those with a disability who receive some sort of benefit.  I implore people to ignore the emotional rhetoric espoused by politicians like Palin, Santorum, and Cameron. They use their disabled children as political props, something I find distasteful. Think logically, analytically.  Do not be tricked by conservatives who give emotional speeches that contradict policies that directly threaten the lives of the very people they exploit. 

A week ago I read a New York Times story that angered me--"Rolling Past a Line, Often Exploiting a Rule" published on October 3. Here is the link:
 http://www.nytimes.com/2012/10/04/nyregion/a-few-passengers-use-wheelchairs-to-avoid-airport-lines.html?pagewanted=1&smid=re-share&_r=0

Apparently a new term has emerged when dealing with passengers in an airport terminal that request a wheelchair--"miracle flights". I have never heard this term but I have seen people who request a wheelchair and most likely do not need one. Some airports (not all) allow people with a disability, usually a wheelchair user, to go to the front of the security line. This supposedly great advantage does not happen every time I fly but it is not out of the norm. According to the New York Times:

In the modern airport experience, where the tedium of long lines, sudden delays and ever-more-invasive security checks is the norm, little can be done to avoid the frustrations increasingly endemic to travel. So it may be an expected, if uncomfortable, fact that some travelers appear to exploit perhaps the only remaining loophole to a breezy airport experience � the line-cutting privileges given to people who request airport wheelchairs, for which no proof of a disability is required.

I have not had a "breezy airport experience" in decades. The author of the article is very clear--not waiting on the security line is a significant perk. However, what the author utterly fails to mention is the downside to this policy to people like me who are paralyzed. There are no "miracles" for me. I am at the mercy of overworked, underpaid, and poorly trained employees. Thus when I read, "While wheelchair users face the same T.S.A. rigmarole as other passengers, their trip through security is often expedited," I was taken aback. I can assure you my passage through airport security has never been expedited. Never, as in not once. In fact I would estimate it takes me at minimum twice as long long to get through security. To state people with a disability are subject to the "same T.S.A. rigmarole" is grossly misleading. This is what I experience. I take off my shoes, belt, and personal items  and place them in a plastic container. I put my single small carry on bag and computer in separate containers. As I approach the entrance my items go through the xray machine. Here is where things goes awry. I approach a glass door between machines and catch the eye of a TSA agent. This person speaks very loudly telling me to wait. He then yells "male assist." I wait for anywhere from 5 minutes to 10 minutes for a"male assist" to appear. When this person ambles over he is often bored and disinterested. Once in a while the TSA agent is openly hostile, clearly I have ruined his day. I am asked "can you walk at all". I reply "no". Some TSA agents will then roll their eyes at this response. The TSA agent asks "do want to be patted down in a private room". I reply no. I am then escorted to an area where I am not within the flow of passenger traffic. I am also far away from my bag, wallet, phone, and computer--a perfect opportunity for my things to walk off (I have lost quite a few cell phone chargers this way and I would never dream of bringing my ipad with me). I am told to wait while the TSA agent walks off in search of gloves. He returns and explains I will be pat down. The pat down can be thorough, as in I am being arrested and searched for deadly weapons or cursory, as in this is a waste of time and energy. In recent months I am sure to fold the air valve under my cushion. Since last summer if the TSA sees this valve I am subjected to intense inspection by a supervisor. My entire body is frisked. Frisk complete I am then asked yet again can you stand. I reply no, more rolling of the eye--I am obviously a lazy shit in the estimation of the TSA. Once again the TSA agent walks away, comes back with a small pad to test for explosive residue. The small white pad is wiped all over my wheelcahir. Yet again the TSA agent walks away and returns. Total elapsed time--on a good day at non rush hour time at best 10 minutes. On a busy day, lets say Friday evening at 7PM when every miserably tired business man or woman wants to get home, it will take at least 30 minutes. When I am at last on my own, I go find my bags that have been left unattended and hope nothing has been stolen.

The above does not fall into the "expedited" category in my experience. Too bad the author did not consider the ramifications of people who lie about needing a wheelchair. The diversion of labor makes my experience as a paralyzed man all the more difficult.  Those hired to assist me on and off a plane assume I can walk. When it becomes clear I cannot walk--not even a little bit--they appear perplexed and hopelessly confused. The fact is airlines are hostile to people who use a wheelchair. In the post 9/11 era my expectations are exceedingly low. I want one thing from the airlines: to not be targeted for abuse. In other words I assume service will be subpar, airline employees over worked, stressed out, and miserable. I do not expect any food, a clean airplane or nice terminal. I simply want to get from point A to point B without being harassed.