Daniel James Death and the Dangerous Public Response

I continue to scour British newspapers for stories about Daniel James. Based on my reading, the vast majority of people continue to praise James parents as "courageous" and "selfless". What has been left unquestioned are the implications of James decision to commit suicide in terms of the lives of people with a disability. If Mr. James is perceived as having tremendous inner strength to end his own life and had the support of his loving parents what does this say about people with disabilities that choose to continue to lead rich and productive lives? In the estimation of one woman, Sue Garner-Jones, she is now perceived as selfish for merely wanting to live. In an article in the Liverpool Daily Post Garner-Jones stated that "People make their own decisions about how to live their life. But there's a lot of talk about bravery and courage for people who are opting out of living their lives. I didn't like the inverse of that". The controversy that surrounds the death of Mr. James has Garner-Jones and many disabled people worried. According to Garner-Jones, "I am seriously concerned that this might have a detrimental effect on anyone who lives with a disability, or cares for someone in this situation, especially since Mr. and Mrs. James referring to his life as a tetraplegic as second class".

When I read Garner-Jones words I was delighted. A voice in the wilderness has spoken out and cut to the heart of the debate about Mr. James death. People with disabilities are not second class citizens. Disabled people have the right to live and enjoy the same civil rights as those that can walk. Those of us who are disabled are not selfish nor are we a burden on society or a drain on the health care system. Paralyzed people are not terminally ill--they have a physical deficit that is compounded by society. As one who is disabled and proud I know that disability is a social construct and that the real problem is not paralysis but the obstacles placed on top of it. If you want to talk about bravery I suggest you forget about Mr. James. To me, he and his parents are cowards who chose an easy way out. The people that are brave are like Garner-Jones who gets up every morning, goes to work, and will most likely encounter needless bigotry at some point during the day. The bigotry Garner-Jones encounters is disability based and relentless. It is based on the false assumption that she is somehow inferior, a tragically flawed human, because she cannot walk. Garner-Jones will be stared at, belittled, degraded, and ignored. Like Garner-Jones and many others, I know far too much about this sort of "spoiled identity" to use the phraseology of Erving Goffman. Tragically, Mr. James will never learn about this nor will he ever be able to assert his civil rights. This takes a kind of bravery James and his parents did not possess.

Assisted Suicide and Disability

Assisted suicide has thrust itself in the news. In Washington voters recently passed an Oregon State type assisted suicide bill. Other states such as California and Vermont might legalize assisted suicide as well. In the U.K. the death of Daniel James has promoted headlines and a fierce debate about the merits of euthanasia. Some characterize Mr. James parents who escorted their paralyzed son to a Swiss assisted suicide "clinic" as being saintly and loving; their actions were a rational response given their son's disability. Most of my friends, largely academics, support assisted suicide. Polls also show the majority of Americans support assisted suicide. I readily understand why many support assisted suicide. I vividly recall seeing my father in ICU after he had a major stroke. What I remember the most aside from seeing my father on the brink of death were the other patients. Many of the people I saw would not recover and had no loved ones to care for them. I recall thinking at the time that people may be living longer but wondered about the quality of that life. I also recall questioning whether the resources spent to extend those lives was worthwhile. My emotional response was soon tempered by the harsh reality that once society determines who is "valuable" enough to live we have decided that some human life is not worth living. Society may be killing its members out of kindness but the end result, death, speaks volumes about our culture and what sort of life we value.

I oppose assisted suicide because it is too easy to kill. Proponents of assisted suicide point out that the merits of assisted suicide are self evident. Why extend the life of people who are terminally ill and in severe pain? Shouldn't an individual have the right to determine if their life is worth living? The problem with this line of reasoning is that those who choose assisted suicide are often not terminally ill. In Oregon where assisted suicide has been legal for over a decade psychiatrists that interviewed those that wanted to die discovered one in four people had undiagnosed clinical depression. In my estimation assisted suicide discriminates against people that have been historically disenfranchised. Here I refer to people that are physically or mentally disabled. The fear of disability permeates our culture and many people believe death is preferable to life with a disability. This is why Mr. James parents helped end their son's life. This fear of disability is also why Mr. James parents have been lauded in the press. This sort of logic scares me to death--pun intended.

Some readers may doubt the grounds upon which I am fearful. Surely a paralyzed man such as myself with a home, family, and job will be treated the same as a person that walks into a hospital. Wrong, very wrong. Doctors are human beings whose education does not preclude their ability to unknowingly or knowingly discriminate against disabled people. If and when I enter a hospital I know I am a liability and will not receive the support needed. Thus if I expressed an overwhelming desire to end my own life I wonder what the response would be. Would the attending physician request a psychological consult or would this person think my desire to die was understandable given the fact I have been paralyzed for over 30 years. This is what I am fearful of, disability based bigotry. This line of reasoning, death is preferable to disability, provided the social justification for loving parents to kill their own son. If parents can rationalize killing a child, I shudder to think what society has in store for me.

Proponents of assisted suicide are quick to point out that people who are suffering from fatal diseases should have the right to end their own life. Why should a person and a family suffer when death is inevitable? This logic is often accompanied by a heart wrenching story about a terminally ill person. Not only does a dying person needlessly suffer but the family is plunged into debt because they lacked adequate medical insurance. The only response to this tragic story is that the ill should be in control of their life and death. Wesley Smith characterizes the intent of assisted suicide as "unquestionably intended to be kind; but they are not. With such deaths emotively and sympathetically reported in the media, and with every lawsuit that chinks away at the laws intended to protect people with serious difficulties from suicide, mercy killing becomes more easily envisioned, more comfortably embraced" (Smith, Secondhand Smoke).

Mr. James death and his parents decision to facilitate it so soon after he was disabled haunts me. I mourn the life of a man I did not know and cannot begin to fathom the actions of his parents. I worry about the implications of James' death. Will a doctor that read about James death decide a person who had a traumatic spinal cord injury life is not worth living and withhold treatment? Selfishly I worry about myself. Will a doctor decide my life is not worth living? I also worry about the degree to which Mr. James death has affected the euthanasia debate in the U.K. Will his death impact Debbie Purdy's case. Ms. Purdy has MS and wants to know if her husband will be arrested should she decide to end her life at the same Swiss clinic where Mr. James died.

One other variable merits mention with regard to suicide and the fear of disability. If I have one learned one thing about life with paralysis it is that caring for such a body is expensive. I know this as does the medical establishment and insurance industry. Given the current global economic crisis the cost of caring for those people with a disability is under intense scrutiny. Budgets across the country are being slashed and the first services that are eliminated affect those that can least afford it--people with cognitive disabilities. Waiting lists for essential services are the norm and growing. Many I know worry American society is taking a step backward to an era when people with cognitive disabilities were warehoused in institutions. Conditions at these institutions were deplorable. The point I am trying to make is that all life has value. The debate about assisted suicide has broad and long lasting implications. There is in my estimation nothing for medical ethicists to agonize over in terms of assisted suicide. Facilitating the death of a human being is wrong and cannot be justified at any level.

NBC Documentary on the 2008 Paralympics

Yesterday NBC broadcast the 90 minute documentary about the 2008 Paralympic Games. The broadcast was a series of biographical stories about American Paralympians. For the most part, the documentary did not present viewers with mindless emotional "feel good stories" that dominate adaptive adaptive sports reporting. Yes, overcoming was a major theme throughout the documentary but this is typical of sports documentaries. Three primary problems undermined the documentary. First, the sound track was dreadful. The music firmly fit into the "inspirational" genre and was at direct odds with the statements made by the Paralympians. There is not a chance such a musical score would ever appear on any other sports documentary. Second, at no point did the documentary delve into the rules, categories, and controversy that surround the competition. Nor was there any discussion of how costly and cutting edge the technology utilized by the athletes. Assuming most people had no exposure to adaptive sports, the viewer simply cannot appreciate or begin the grasp the athletic accomplishments of those portrayed. Third, the biographical segments focused far too much on how the athletes were disabled. To me, this was beside the point. I tuned in to see world class athletes compete not discuss their respective disability.

The power of the documentary can be squarely placed on the articulate and incisive comments by the athletes themselves. For instance, Cheri Blauwet, was particularly impressive. Frankly I thought I would never see the day when I heard someone say on television that "disability is a social construct". I was also impressed by a scene in which an amputee Paralympian is shown talking to school children. The woman in question allowed the kids to hold and pass around her prostheses. The look of wonder and awe on the face of the children is priceless. Rather than perceiving disability as a negative, the kids were impressed and will no doubt think of amputees as being cool.

Given the right kind of exposure, I think the Paralympics could become a mainstream sport. There are many practical and social impediments that would need to be overcome. As pointed out in a column in the Los Angeles Times, the practical problems that prevent the Paralympics of getting any media coverage include the timing and cost. The Paralympics take place after the Olympics Games and the people that cover sports are tired. Budgets are spent and the football and baseball seasons set to dominate all reporting. While I have no ready answer for these logistical issues, I suspect they can be resolved. It is the social reluctance to devote the time and space to adaptive sports reporting that is the real problem. Selling adaptive sports to those who have no clue as to the intense nature of the field is not easy. The stereotypical question asked is who wants to see a bunch of disabled people compete? I suggest for those that ask this question to watch the X-Games. Last winter mono ski races were included for the first time. The coverage was excellent and the races were extremely exciting and popular. The crowds were enthusiastic and imagery captivating. In short, adaptive sports have great potential and NBC took a very small step toward broadcasting viewing that is gripping.