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Thursday, March 21, 2013

The Spin Doctors on Tomas Young

Tomas Young is very much in the news. His last Letter is making the rounds on the internet. Stephen Kuusisto and just a few minutes ago Stephen Drake at Not Dead Yet have posted about Tomas Young. Like me, Kuusisto and Drake are deeply upset at how the mainstream media are spinning the story. Absent are references to assisted suicide. In its place Young is now described as being "in hospice care" or a "dying Iraq veteran". No mention is made of VSED. Instead Matt Campbell in the Kansas City Star writes that Young "will soon refuse nourishment water and life extending medication". This is a very benign way of telling his readers Young will dehydrate and starve himself to death. Democracy Now has joined the band wagon. In an exclusive interview with "dying Iraq war veteran" Juan Gonzalez writes "Tomas Young's tragedy goes back to 2011". Democracy Now reports Young will "end his life by discontinuing his nourishment which comes in the form of liquid through a feeding tube". It appears to me the media has decided that Young is a "dying Iraq war veteran" fed threw a tube. His story is a tragedy. Phil Donahue, director of Body of War, understands why Young wants to die as do others who are close to him. Young in Donahue's estimation shows an "unusual act of moral courage". I think not. I think Young's experience in the army, the decision to go to war, and the bungling of his care on the part of the Veterans Association is the real tragedy, a tragedy that is socially unacceptable. Equally unacceptable is those that support Young's decision to die. Thus I find much to object to in stories about Young. For instance Donahue states "he's not only a paraplegic, he can't hold silverware. Tomas has to be fed. When he and Claudia were able to go out, they would  go to a restaurant, and they'd find--she would find a corner where she could feed him without being stared at". 

I am stunned at how quickly Young's humanity has been reduced by a host of powerful forces that support his death. Young wants his death to have meaning. I would suggest Young try to make his life worth meaning. Living with a disability takes guts or to use Donahue's words unusual moral courage. It takes steely resolve to reject stereotypes associated with disability. It takes resolve to navigate the world that is not designed for people that have atypical bodies. It takes resolve to fight for a taxi in NYC when the Mayor tells the tabloids it is too dangerous for a person using a wheelchair to hail a cab in the street. It takes resolve to go to a museum and be accosted by guards who tell you guide dogs are not permitted. It takes resolve to go to a meeting and know no one wants you to be present because the first line item cut from the budget is equal access. It takes resolve to battle with airlines that begrudgingly  comply with the law. It takes resolve to   step in front of a bus because the driver does not want to us the lift. It takes resolve not to scream in rage when a stranger tells you that he would prefer to be dead than paralyzed. It takes resolve to file a formal complaint when refused entry to a restaurant because of a no wheelchair policy. This is the sort of courage and resolve we need. We do not need to add to the death toll associated with the war in Iraq. And if I could say one thing to Young it might start with don't give that bastard Bush the satisfaction of dying. Be a thorn in his side now and forever.

Huffington Post Misleading Reporting on Thomas Young

The Huffington Post published a story yesterday entitled "Thomas Young, Dying Iraq Veteran Pens Last Letter To Bush, Cheney on War's 10th Anniversary".  Simply put, the article is dreadful and I will not provide a link. The Huffington Post article is superficial, devoid of analysis. It is spin at its best. I suspect similar articles will abound in the mainstream press in the weeks to come. The dye has been cost, a formula has created. The spin doctors are hard at work. Proponents of assisted suicide will characterize Young as heroic and brave. Groups such as Compassion and Choices will argue in the absence of assisted suicide legislation the best we can do to help men like Young who is clearly suffering is VSED.  Liberal anti war activists will use Young's death to illustrate that war is hell and altruistic men like Young needlessly die. In short, Young has a veritable cheering squad behind him. He is a political pawn with much larger social forces packaging a story to meet their ends.

One thing is utterly absent from mainstream news stories: a disability rights perspective. No mention is made of the inherent problems associated with VSED or how the Veterans Administration has failed Young. These are meaty issues worth discussing in detail. But this is exactly how the hype surrounding Young is not being discussed. The Huffington Post article will not let facts get in the way of good melodrama and professionally spins the facts. In absence of analysis the article states that after Young's spinal cord injury "he would suffer a number of medical setbacks that allowed him to survive only with the help of extensive medical procedures and the care of his wife, Claudia". I do not dispute the fact Young has had serious complications associated with spinal cord injuries. I know all too well what he has experienced because I have lived with paralysis for over 35 years. I also know Young's struggles with paralysis is not unique nor are the serious complications he has experienced. Young fits into a small class of people: those with a spinal cord injury that express a desire to die. Precious few commit suicide. The vast majority of people after a period of time adapt. They lead ordinary lives. They get married, have children, get divorced, and move on with life. This is not a story that will sell newspapers or end war, or get assisted suicide legislation passed into law.

The stories I have read  about Young identify him as a "dying Iraq war veteran". This is extremely misleading.
Young is dying because he has decided to end his life. He is not terminally ill. He is simply disabled. He is going to commit suicide. And that is exactly what VSED is--a legal way of committing suicide. The unspoken cultural subtext reveals a deeply ingrained bias and destructive stereotype: one is better off dead than disabled. The more severe the disability the more logical it is to express a desire to die. The skeptic could accuse me of creating my own spin. I am afterall opposed to assisted suicide legislation and on the Board of Not Dead Yet. So yes I do indeed have an ax to grind; however my ax is not wielded to end other people's lives. My views are grounded in the gritty reality of every day life as a paralyzed man. My reality and Young's is based on a social failure, that is our bodies, our very existence, is not valued. It is rare a day goes by when I am not reminded of my stigmatized identity. The social abuse I experience ranges wildly from minor inconvenience to gross violations of my civil rights. On any given day I  could encounter a blocked curb cut or similar architectural barrier. I also could encounter people who insist and "helping" me or a stranger telling me that they would prefer to be dead than use a wheelchair. I could be refused entry into a restaurant or store.

The point I am trying to get across is that without the appropriate social supports I truly understand why a person such as Young could conclude death is preferable to life with a disability. Living with paralysis can be hard. Just the other day I looked down at my stomach and experienced severe and debilitating rolling spasms. I could not eat, drink or work. This lasted for many hours and suddenly disappeared. As I looked down at my stomach I thought of Young. Regardless of the severity of one's physical deficits the fact remains our society prefers to rely on an antiquated understanding of disability. Disability is first and foremost bad. Disability is feared. The ADA is not civil rights legislation but an onerous burden imposed by the federal government. Until the antiquated  and destructive stereotypes associated with disability are rejected people like Young will die. Young's bodily deficits are not at fault. Rather it is the failure of our elected political leaders, the Veterans Administration and our health care system. All these entities failed Young. When I think of Young as I have often done in the last few days I hope someone from within the disability rights community can reach out to him. I have tried and failed to find his contact information. I desperately want to tell him about how wonderful and wildly unpredictable  life is. One can live with paralysis, pain, and a degree of dependence on others. It is a different life for sure one based on situated autonomy. My life and Young's has value. This is the story I want to read about.

Tuesday, March 19, 2013

Thomas Young: The Last Letter has posted Thomas Young's "The Last Letter" addressed to former President Bush and Dick Cheney. Here is the link: Dated March 18, the 10th Anniversary of the Iraq War, Young is filled with melancholy rage.  Young clearly feels deceived and used. He characterizes the Iraq War as the "largest single strategic blunder in U.S. history".  He rails against Bush and Cheney writing:  "I have, like many other disabled veterans, suffered from the inadequate and often inept care provided by the Veterans Administration. I have, like many other disabled veterans, come to realize that our mental and physical wounds are of no interest to you, perhaps of no interest to any politician. We were used. We were betrayed. And we have been abandoned". This sentence is heart breaking as is most of Young's letter. But I cannot help but feel there are larger forces at work. Young has been out of the news since 2007 and now weeks before he will kill himself he has suddenly re-emerged. Let's be blunt: VSED sounds much better than suicide, assisted suicide, euthanasia or hospice care. VSED is a benign acronym and has been at the forefront of Compassion and Choices campaign "Peace at Life's End: Anywhere". It seems logical to assume Compassion and Choices professional campaign to promote VSED has purposely clouded issues at the end of life. It is what I would do if I wanted to insure assisted suicide legislation was passed into law. Confuse people for we are a society that does not discuss much less accept death. This is to our detriment--especially for vulnerable populations such as the elderly terminally ill and disabled. Young sadly highlights this  confusion. Is he committing suicide? If I argued this those caring for Thomas as part of hospice would be deeply insulted. How assisted suicide? Do not go there, that is not legal and any person assisting him could be subject to prosecution. 

In the social vortex Young has found himself in it seems from the comfort of my home he is being supported by the anti-war movement and I sincerely doubt it is a coincidence Young has emerged into our collective conscience on the 10th anniversary of the Iraq War. I also do not think it is a coincidence that in the article by Chris Hedges Young referred to suicide and in his "Last Letter" states he is in hospice care. Remember Young was quoted saying "I had been toying with the idea of suicide for a long time" an that "instead of committing conventional suicide and I am out of the picture, people have a way to stop by or call and say their goodbyes". To me Young is clear: he is committing suicide in a nonconventional way. I find this objectionable for many reasons foremost among them is who, if anyone, has tried to reach out to him and point out he can lead a rich and full life. 

Young's "Last Letter" was followed by an essay by Ron Kovic the well-known Vietnam anti war author. I found his essay, The Forgotten Wounded of Iraq" moving but fell far short of directly supporting Young. That is arguing life is worth living. See  
Kovic wrote about disabled Iraq veterans and speculated:

What will it be like for them when one morning they suddenly find themselves naked sitting before that mirror in their room and must come face to face with their injury? I want to reach out to them. I want them to know that I’ve been there too. I want to just sit with them in their room and tell them that they must not give up. They must try to be patient, try to just get through each day, each morning, each afternoon any way they can. That no matter how impossible and frustrating it may seem, how painful, regardless of the anxiety attacks and nightmares and thoughts of suicide, they must not quit. Somewhere out there there will be a turning point, somewhere through this all they will find a reason to keep on living.

It is my sincere hope Young experiences that turning point Kovic writes about. A time when he realizes life even one filled with pain and complications associated with spinal cord injury is worth living. 

Sunday, March 17, 2013

More On Shannon Larratt

I have read two outstanding tributes about the life of Shannon Larrattt. See Marisa Kakoulas at Needled and Sins: She wrote: In discussing Shannon as the ultimate cheerleader of people's adornment and body morphing, my friend Julien said it best, "He trusted people to do right by themselves." Shannon had faith in people, especially people for whom society treated with little respect. He understood it because he lived it. Even in his last post, he discusses how he was not given the proper pain management for his chronic illness because doctors looked at him and thought he was just a drug addict. His life was dedicated to changing this prejudice and offering support to all of us who have faced so much discrimination because of the way we look.

Shawn Porter at Sacred Debris wrote a moving tribute about Larratt entitled Stay Calm: Don't Panic. I found Porter's words fascinating for Larratt was and always did push the boundaries of body art and modification while in recent years Porter has become more conservative. See:

Over the years my friendship with Shannon evolved. We didn’t always agree; far from it. As I got older my views became increasingly conservative and his progressively more radical. We’d butt heads privately and publicly about the safety of a procedure or the ethics of a practitioner, but we’d always respect the other’s opinion and by the end of the argument we’d be smiling. We went through good periods and bad together, the balance shifting depending on the year, but through it all, he remained someone who’s impact on my life is so thorough that it’s impossible to imagine my life without him.
I know the last two posts have been a bit of a departure from my usual focus on disability rights but there are obvious parallels between the bias modified people encounter and the bias people with a disability encounter. I urge those who have never heard of Larratt to visit BME.