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.

Thomas Young: The Last Letter

Truthdig.com has posted Thomas Young's "The Last Letter" addressed to former President Bush and Dick Cheney. Here is the link: http://www.truthdig.com/dig/item/the_last_letter_20130318/ 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 http://www.truthdig.com/dig/item/forgotten_wounded_20060117/  
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. 

More On Shannon Larratt

I have read two outstanding tributes about the life of Shannon Larrattt. See Marisa Kakoulas at Needled and Sins: http://www.needlesandsins.com/2013/03/rip-shannon-larratt-1973-2013.html. 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: https://sacreddebris.wordpress.com/2013/03/16/stay-calm-remembering-shannon-larratt/

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. 

Shannon Larratt, Founder of BME Commits Suicide

Shannon Larratt, founder of BME, committed suicide. His last statement can be read here: http://pastebin.com/m8t6mb7W I never met Larratt but there is no question he influenced my thinking  and was a critically important figure in the field of body art and modification. BME was founded in 1994 and was among the first sites on the internet. Larratt's first post stated: "Is anyone out there interested in starting an e-zine dedicated to piercing and body art? It's a project I would like to get started". Within months BME was one of the most popular sites on the internet and is now one of the oldest sites. BME has experienced great change since it was founded and has been subject of cursory  academic scrutiny. I am sure in the years to come Larratt and BME will be the subject of serious academic attention. In fact I would go as far as to maintain without Larratt and BME the popularity of tattooing and body art in general would not be what is today without his hard work. Larratt through BME established a vibrant on line community of people in much the same way people with a disability have done so via the world of blogging. Larratt wrote:

For a long time the body modification community, while deeply isolated from the mainstream in a way that may be hard for younger people today to really relate to, had a wonderful sense of solidarity � a sense that we�re all in this together, a sense of all supporting each other�s personal paths, from the subtle to the extreme � but now it feels like there�s infighting and intra-community prejudice. We once all worked together to better ourselves and share our experiences � for example the creation of BME�s various knowledge-bases (birthed from the earlier Usenet FAQs) that brought the world level-headed accurate information on modifications and their risks, as well as the thousands of detailed �experiences� that people wrote � whereas now it seems like the majority of modification media is just about posting pictures, devoid of any real stories or information, reducing them to visual pornography for people to �cheer and jeer� at. All of these changes have slowly eaten away at the character of the body modification community and changed it in subtle and unpleasant ways.

In reading Larratt's writings over the last few years I knew his health was not good. However, his suicide comes as a shock in part because he deeply loved his daughter Caitlin. For him to end his life and not be a part of her life must have been exceedingly difficult. In his words:

The last three or four years have been a daily struggle, beginning with a multi-layered pain made up of a never-ending, never-lulling dull throbbing from the core of my muscles beginning in my legs and eventually spreading out over my entire body, coupled with a constant burning sensation in my skin that made it impossible for me to feel anyone�s touch without it being a bitter agony. I held out hope that a treatment for the pain if not a cure could be found, but every difficult diagnostic step only confirmed the degenerative condition replacing healthy tissue with junk calcium was incurable, and every new attempt to treat the pain only emphasized that it was inescapable. Not only that, but every day it grew. As impossibly painful every day of this process has been, it has been made more difficult by knowing that the next day will always be worse, and every day that goes by I have less defences against a more powerful foe. There was a time that I believed that I could cope with the unending pain, but then the pain�s root began catching up to me as less and less healthy muscle tissue remained. Every day I could walk a little less. Carry a little less. Use my hands a little less. Bit by bit it chipped away at me. As I write this even standing up is indescribably painful, even sitting up, and the idea of walking nightmarish, although I have done my best to hide it and keep it buried.

I wish I could have exposed Larratt to the disability rights community. Perhaps it would have made a difference. Perhaps he would also have better been able to assert himself as he questioned the quality of the medical care he received. On this front, I am sure he is correct. As a modified man he must have experienced significant discrimination. 

I have mixed feelings about the medical treatment that I�ve received. From everything I have seen and understand, I don�t believe that anything could have been done to fundamentally �cure� me (although I suspect that cures for these sorts of genetic conditions will come in a decade or two � I wish I could have made it that long). This condition is what it is, and it was probably fated for me the day I was born...  I  believe that there were fundamental shortcomings in the way both my condition and my pain were treated, and that the last few years could have been much more pleasant if the pain had been more aggressively managed. I believe this was in part because of the prejudice of multiple doctors due to my appearance causing them to stereotype me as drug seeking (and the simple reality is that it can be hard to tell, and we are so cruel as to prefer to �punish� the sick than to �reward� the mentally ill). I wish there was some way to make those doctors understand the cruelty they enacted. A patient should have the right to a pain free life, even if that comes with some risk. 

This passage is heart breaking as is his championship of assisted suicide in Canada. Obviously I disagree but have always felt I learn far more from those I disagree with than with those I share similar views with. Today is not the day to disagree. Today is a day to mourn an important man whose death will touch people such as myself that knew Larratt by his works alone. To his family I offer my thoughts and good wishes at a terrible time in their life. I hope their grief will not be overwhelming. Tonight I will pull out I am the Strength of Art, Larratt's first venture into the "real world" of publishing and pour myself a stif drink in his honor. Larratt made only 500 copies of this book and it was "hand assembled by either Caitlin or I while sitting in my back yard so not only are holding what I believe is a piece of art, but a piece of history as well (maybe in ten years you can sell it on ebay".  Rest in piece Shannon Larratt. 

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 http://www.truthdig.com/report/item/the_crucifixion_of_tomas_young_20130310/ 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.

Lera Auerbach: The Blind

Carefully read this "note" about The Blind by Lera Auerbach, a capella opera. The quote is from Auerbach's website: http://leraauerbach.com/content/compositions_catalogue_detail.php?id=681

At a lonely clearing in a wood, a group of blind people await the return of a priest who led them there in order to enable them to enjoy the last rays of the sun before the beginning of winter. Only the sound of the nearby sea can be heard. The longer they wait, the more restless the blind people become; in their desperation they realise that they are helpless and cannot move from their place. Their fear escalates to naked terror when they discover the corpse of the priest. The blind people form a circle round the dead man and begin to pray for forgiveness and salvation. Steps become perceptible during the prayer. The presence of something mysterious makes the blind people panic; they pray ever more fervently. In his mother�s arms, the small child, the only person in the group who can see, breaks out sobbing. What does the child see? Is it rescue, the rescue so ardently hoped for, or is it death?

This opera will be performed at Lincoln Center in June. It has already been performed in Moscow and Berlin. Auerbach is a major player in the music world. Apparently Auerbach read Maurice Maeterlinck 1890 one act play the Blind and believed it would make a great opera. As I understand Maeterlinck, he thought blindness was a metaphor for the human condition. That is life often leads us astray and powerful forces beyond our control dictate our lives. I am by no means a literary analyst but I do get that Maeterlinck was not writing about people who were blind but rather those who are disempowered. Symbolism I get. What I do not get is how Auerbach could have written the above words. It is 2013 not 1890. The play by Maeterlinck was important circa 1890 but is highly objectionable today. Let me correct myself: the words above are not objectionable they are offensive in the extreme. It is ableism run amuck.

What was Auerback thinking?  In her words: �I love Maeterlinck. When I read �The Blind� I thought to myself - this story is a perfect opera. Or anti-opera. And it needs to be done a-cappella. Since some of the characters are continuously praying or chanting - this provides a perfect structure for a chamber-music approach to balancing of the voices where some of the voices provide a constant harmonic base, while the others play more prominent voices.�

This is intellectual masturbation. The play rests upon the premise that the blind characters are utterly and completely helpless, dependent upon others. By extension blind people today are dependent retches. My friend Stephen Kuusisto wrote the following email when he learned the Blind would be performed at Lincoln Center.

The description of the opera on Lera Auerbach's website left me speechless, inasmuch as it employs nearly every conceivable "ableist" cliche about blindness one can employ--blindness is embedded in her pr�cis with more cliches than any one person may creditably imagine. In fact the synopsis is so offensive I'm left with a dislocated mandible which I hope is a temporary condition as I'm at the MacDowell Colony for the Arts and there are no local dentists. How could Ms. Auerbach imagine that in 2013 blindness can still be used as a metaphor for lack of knowing or knowledgeability; powerlessness, spiritual failure, immobility, or worse, stand as a metonymic reduction for death itself? The description from her web site would, in fact, cause me to cry save that her prose is so louche and decadent one finally has to conclude this is a joke.  Will Lincoln Center actually print this in the programs? 

Lincoln Center will surely print Auerbach's bigoted note. Auerbach's opera will be fawned over (see Auerbach's website or Facebook page).  However people like me who mix disability studies scholarship and activism are offended. Auerbach's words are so horrific I refuse to engage her or Lincoln Center. I very rarely refuse to engage the normate to use Garland-Thomsen's awkward word. Sometimes one must simply say no. The words are too wrong or the ideas too horrible to contemplate much less discuss. To engage is to provide legitimacy to the other. Therefore I refuse to debate Auerbach or a scholar such as Peter Singer. They have not earned my respect.

One final point: my experience with Lincoln Center has been consistently terrible. Lincoln Center, even after major renovations, is not particularly accessible. It has been and remains a hostile social and physical environment for people with disabilities to navigate. Lincoln Center is far from unique. Many such comparable institutions perceive disability with disdain. We do not want those pesky people who use wheelchairs in our lovely buildings. And guide dogs? No way. This is not the image Lincoln Center wants to cultivate. The closest I will come to the Blind is in a protest outside of Lincoln Center.