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Wednesday, March 13, 2013

Thomas Young and Suicide: All the Wrong Questions Asked

I have not thought about Thomas Young in quite some time. He was featured in the 2007 documentary Body of War directed by Phil Donahue and Ellen Spiro. Body of War was a critically acclaimed film that was deemed "emotionally ravaging" and a "stunning achievement".  I found the film to be morbidly depressing, a perfect dissection of how the media can manipulate young altruistic people interested in making an important contribution to society. Thomas Young was one of many men in the aftermath of the attacks of September 11 that joined the military to make the world a safer place. He accepted without thought that America was going to fight the good fight, the "War on Terror". Young sincerely wanted to search and destroy those responsible, the so called "evil doers" to use Bush's words. In April 2004, Young's fifth day in Iraq, the reality of war was made all too real. Young was was shot and paralyzed on what he described to be a poorly planned mission. Body of War effectively juxtaposed Young's struggle coping with paralysis against the propaganda used by the Bush administration to justify going to war.

Young I had assumed went on to have a good life. This did not happen apparently. Based on an article  I read by Chris Hedges Young has struggled mightily and has entered into hospice care to die even though he is not terminally ill. Since his injury, Young has taken a laundry list of medications (carbamazepine, coumadin, tizanidine, gabapentin, bupropion, omeprazole, and morphine were mentioned in Body of War). According to Hedges in 2008 Young had a blood clot in his arm, was given blood thinners and briefly hospitalized. A month later the clot migrated to his lung. He experienced a major pulmonary embolism and lapsed into a coma. When he emerged from the coma his speech was slurred and he had lost the use of his upper body as well as his short term memory. Young subsequently started having severe abdominal pain and in desperation had his colon removed and now uses a colostomy bag. This is what I would characterize as a clinical cascade. Without question Young has suffered.

Hedges is a well respected journalist who with a team of reporters for the New York Times won a Pulitzer prize for the paper's coverage of global terrorism. His article cannot be easily dismissed. Again, I share Hedge's staunch opposition to war but not the rhetoric he uses in his story about Young. Here is a particularly galling paragraph:

Young will die for our sins. He will die for a war that should never have been fought. He will die for the lies of politicians. He will die for war profiteers. He will die for the careers of generals. He will die for a cheerleader press. He will die for a complacent public that made war possible. He bore all this upon his body. He was crucified. And there are hundreds of thousands of other crucified bodies like his in Baghdad and Kandahar and Peshawar and Walter Reed medical center. Mangled bodies and corpses, broken dreams, unending grief, betrayal, corporate profit, these are the true products of war. Tomas Young is the face of war they do not want you to see.

Hedges does not give a damn about Young. He is not only using Young to push his opposition to war but also using an overwhelming and antiquated perception of disability. Hedges article is peppered with ableist phrases like "his legs now useless" and once a "voracious reader but can no longer turn the pages of a book" and finally the following assessment of Young:

the war, the wound, the paralysis, the wheelchair, the anti-war demonstrations, the wife who left him and the one who didn’t, the embolism, the loss of motor control, the slurred speech, the colostomy, the IV line for narcotics implanted in his chest, the open bed sores that expose his bones, the despair—the crushing despair—the decision to die, have come down to a girl. Aleksus, his only niece. She will not remember her uncle. But he lies in his dimly lit room, painkillers flowing into his broken body, and he thinks of her. He does not know exactly when he will die. But it must be before her second birthday, in June. He will not mar that day with his death.

Hedges accepts the fact Young wants to die without question. He does not ask why Young has "open bed sores that expose his bones", a description of severe stage four wounds that are preventable. He does not question why Young takes so many powerful medications. He does not question why many other people with similarly difficult medical complications lead ordinary and fulfilling lives. He does not question why Young had a colostomy. He does not question why Young has an IV line for narcotics implanted in his chest. He does not at any point suggest Young's life is worth living. He does not ask if Young has tried to connect with other people with a disability. He does not question why a man who is not terminally ill can enter into hospice care and die. He does not question how difficult it is to starve and dehydrate one's self death.  

My reaction to the following quote is dramatically different than Hedges:

I had been toying with the idea of suicide for a long time because I had become helpless... I couldn’t dress myself. People have to help me with the most rudimentary of things. I decided I did not want to go through life like that anymore. The pain, the frustration...I felt at the end of my rope... I made the decision to go on hospice care, to stop feeding and fade away. This way, instead of committing the conventional suicide and I am out of the picture, people have a way to stop by or call and say their goodbyes. I felt this was a fairer way to treat people than to just go out with a note. After the anoxic brain injury in 2008. I lost a lot of dexterity and strength in my upper body. So I wouldn’t be able to shoot myself or even open the pill bottle to give myself an overdose. The only way I could think of doing it was to have Claudia open the pill bottle for me, but I didn’t want her implicated.

I thought of my mother when I read Young's words. I drifted back in time to those first rough years of paralysis. There were times I was morose, truly miserable. I forget what I said but I vividly remember I enraged my mother. I have no doubt I expressed the worst form of self pity. I will forever recall the look of fury on her face as she literally hissed at me something to the affect "Damn it, stop. Your brain works perfectly fine and with that ability you will lead a good life". Young is not dying for the reasons Hedges maintains. Young is dying because disability is a social malady. I am not dismissing the many difficult aspects of his life and disability. They are very real. Like Young I have experienced searing pain, depression, social isolation, and blatant bigotry. I am willing to admit even today there are days I do not leave my house because I simply cannot cope with the inevitable screwed up social interactions. But like millions of other people with a profound disability I soldier on (sorry for the bad pun).

What disturbs me the most about Young's entry into hospice care is the larger implications. He is not the first nor will he be the last paralyzed person who will choose to die. I am appalled by Young's decision. I was equally appalled by Christina Symanski's death. I cannot fathom how we as a society can condone and enable a paralyzed person who is not terminally ill to enter into hospice care. I cannot envision a bipedal person who expresses a desire to die being able to end their lives as Symanski did and Young desires. In my opinion Symanski and Young were used. Symanski was used by the cure industry in part because she made a Faustian bargain to wait a few years until a cure was discovered. Young was used by those opposed to the war and a society that is unwilling to provide adequate social supports.

More generally Symanski and Young represent a disturbing trend for people who experience a traumatic spinal cord injury. In the olden days when I was paralyzed in 1978 modern rehabilitation was being established. Newly minted paralyzed people were given time to adjust to paralysis. It was not unusual for people to receive months of rehabilitation. This was not strictly necessary medically but the long lasting results were beneficial in the extreme. This enabled a person to cope with the important though mundane physical changes in the body. For instance it took months for me adapt to the changes in how I pissed and pooped. I learned how to adapt by ignoring all medical advice and listening to my paralyzed peers. This does not happen today. People whiz through rehabilitation in mere weeks. Precious time is wasted on cure industry research and propaganda. Worse yet people can be lead to believe a cure to spinal cord injury is in the immediate future--as within their life span. Thus people can put their life on hold and five to ten years post injury face a crisis situation. They are socially isolated, have not worked in years, receive inadequate social supports and are suddenly confronted with the idea I am and will always be paralyzed. In my estimation too many paralyzed people are not taught the practical skills needed to survive in a hostile social environment. Without any connection to the disability rights community people do not learn about the social model of disability or the long history of social oppression. People remain unaware of the Eugenics Movement, forced or coerced institutionalization, ugly laws and the long battle to pass civil rights legislation such as the ADA. People are unaware that it was not until 1975 that children with a disability were legally entitled to attend public schools. Without this knowledge it is all too easy to conclude one's life has no meaning. Young's despair is understandable. Understandable because he lacks the required knowledge base. Has he ever read about Ed Roberts who helped found the independent living movement? Has he been exposed to any figures in disability studies scholarship? Has he ever met another person with a comparable disability that manages to lead an active life? I am willing to bet the answer to these questions is no. And this is exactly why I consider disability to be first and foremost a social malady.


tigrlily said...

Thanks you for writing this, Bill. I had hoped that Chris Hedges might be a potential ally. I had even tried to find an email address for him in hopes of contacting, educating, and maybe bringing him on board. To borrow a phrase from Diane: "Oh, sigh."

I hope you submit your essay as a response to his article.

E Fischer said...

An excellent and succinct piece Bill. People are always pandering and riding others for their own agenda. Social justice is a lofty goal and we must work very hard to try and achieve it.

E Fischer said...

While I understood her decision,having lost my mother to euthanasia (it wasn't that she wanted to die, but rather couldn't see the point in living, a big difference) I feel that on occasion while the decision is a personal one, like anything else we can always benefit from full disclosure, meaning to be truly well informed and believe that many times agendas are pushed, people are made to feel guilty and depression, a coincidental of terminal illness, should always first be addressed so that we don't "hurry things along".

Middle Child said...

What you have just written is how my husband and i felt about how things were/are going in Australia re how people judge the worth of our lives. When Don broke his neck it was 1982 - there was the first seven weeks when he couldn't be moved and then about 5 months of rehab in the hospital's then modern Spinal Unit. Care was good and there was daily Physio. He did go through dreadfully down days, weeks even - and comments from staff who I overheard saying to him "if I was you I wouldn't want to live" Bloody hell...his life was worthwhile for no other reason than he was a human being. Contrast this with the fact that in that same hospital now a newly paralysed person is sent to ICU where the nurses are not specialised - the only Physio we saw there when Don was being killed was one who cleared his, lungs so the ventilator would work. The new Quad in the next room never had a Physio come in once that we saw in the 5 weeks we were there. In that same ICU a newly paralysed man was allowed to have his ventilator tunred off after only 4 months - and I recall 4 months being the time when Don got really down... the book written about this lauds his decision as something brave and noble - I feel sick when I see how things are changing and am grateful to read your posts - as I can share them if that is okay and hopefully just open the eyes of a few.

Michele said...

Many thanks for sharing your insightful thoughts and persuasive arguments.