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Friday, May 10, 2013

Assisted Suicide in Vermont: I am Worried

It appears assisted suicide legislation will soon pass into law in the state of Vermont. The Vermont State Senate voted 17-13 to pass the Patient Choice at the End of Life Act. The bill will be sent to back to the House and Governor Peter Shumlin is expected to sign the bill into law. This news has created a buzz because Vermont will become the third state in the nation to pass such legislation.  Proponents of assisted suicide legislation surely consider this a great victory (Thaddeus Pope at Medical Futility was down right gleeful, see Opponents of assisted suicide such as the Death with Dignity Center, Vermont Right to Life Committee, Second Thoughts and Not Dead Yet are disappointed.

I am not surprised this bill was passed into law. Vermont, a small rural state with a small population, is a cultural entity unto itself. I deeply admire Vermonters. I have spent a lot of time in Vermont since I started skiing. But I am not a Vermonter and this is an important fact. For some Vermonters being from a different state disqualifies me from stating an opinion pro or con about Vermont legislation.  I get his. I am a New Yorker, an outsider. My business via ski tourism is welcome but I should butt out of Vermonters business. I get this. I do not come across many Vermonters stating an opinion about New York legislation. Vermont embraces an especially tough rugged type of individualism. I get this. Americans of every stripe embrace and value individual freedom. We applaud independence and a strong work ethic. And wow do the people of Vermont work hard.  The Vermonters I have met and skied with are good people. The very best in fact. Vermont really has communities that work together in ways I admire. If you doubt me read about the response to the recent hurricanes. In the face of a natural disaster Vermonters went out of their way to help others and rebuild roads and bridges at warp speed.  

If Vermonters are so great why did they pass assisted suicide legislation that I consider potentially dangerous?  I would speculate Vermonters have embraced a type of individualism that does not permit them to think about vulnerable populations and the risks they can encounter. I get this. Vermonters are individuals and members of a strong and vibrant community. We will take care of our own. We will care for the sick, elderly and disabled. I contend not every person is part of a community in Vermont. There are socially isolated people who have no social connections. This is an afront to Vermonters. 

Again, I admire the individualism and work ethic of Vermonters. So let me appeal and provide a Vermont based example of the risks I worry about when it comes to assisted suicide legislation. Amanda Baggs has Autism. She lives in Burlington Vermont. As many have already detailed, Baggs was recently seriously ill and in need of having a JG Tube inserted.  This is an ordinary surgical procedure and in Baggs case would undoubtedly be life saving. Yet this is not what some Vermont doctors thought was was the best course of action. They pressured Baggs to consider the “alternative”. The “alternative” here was death. Thankfully Baggs experience generated a strong response on the part of the Autistic community in particular and the disability rights community in general.  I could state much more about the response to Baggs experience but I want to remain Vermont specific. Rachel Cohen-Rottenberg, until recently a resident of Vermont, and person with Autism wrote: 

There has been a great deal made lately of the so-called right to die — the right of terminally ill patients to obtain a lethal dose of medication in order to end their lives. Advocates for “death with dignity” believe that they can put enough safeguards in place to ensure that people are able to make a free and autonomous decision, protected from outside pressure at the hands of parties who do not have their best interests at heart. Under our current system, the very notion of this kind of autonomy is a dangerous myth. There can be no free and autonomous decision to die with dignity when people who want to live with dignity are not encouraged to live — when the very idea that they can live with dignity is not even on the radar of the doctor who walks into the room. Let’s face it: disabled people represent the failure of the medical profession to live up to the mythology our culture has built around it — that cures are right around the corner, that medical science is all powerful, that life can be made perfect and pain free, and that even death can be put off indefinitely. People with disabilities are an affront to a culture that idolizes the medical profession and assigns it all kinds of power it does not have. The myths by which we live fail abruptly in the presence of a person with disabilities, and doctors are no more immune from the power of those myths than anyone else.
For more by Rachel Cohen Rottenberg see:
Cohen-Rottenberg's last line is chilling—“doctors are no more immune from the power of those myths than anyone else”.  Until 2010 I refused to believe a physician could be so biased (yes, I was that naive). I revere education and knowledge and refused to believe such a physician could be grossly biased against a population of people. This is what education is all about—instilling the ability to reason, to see shades of gray in a black and white world, to notice subtle nuances, and be free of bias. One experience in a hospital late at night shattered that illusion for me. It was a soul crushing experience I tried to bury with all my heart and all my soul. See:  My experience, Amanda Baggs and an unknown number of others is exactly why I am worried--it is why all people should be worried. Like it or not, vulnerable populations exist in every state. In every state where assisted suicide is legal vulnerable populations are at an increased risk. Proponents of assisted suicide legislation scoff my concerns. They quickly point out no abuse I worry about has ever taken place in Oregon and Washington. What these people fail to mention is that state required reporting accounts for not much more than the barest demographics of the person that ended their life. Under state required reporting my experience and Baggs experience would not come to light. In fact Baggs and I are lucky. We had family and friends. Yes, I am indeed worried. What happens to those who are isolated and alone? What happens to an elderly person that has outlived his family and friends? What happens to a terminally ill person who is all alone? What happens to those with severe disabilities--especially those with profound cognitive disabilities? What happens to a person with a severe mental illness? Who will support and protect these people?  I hope Vermonters will heed my words and think about these questions. 

Wednesday, May 8, 2013

A Unique if Not Gross Dog Story

If you do not like dogs, labrador retrievers in particular, stop reading. I am not joking. Last night I got a delivery of groceries (this my guilty pleasure). I emptied all the bags on my counter and started thinking of meals to prepare. I love to cook and have become adept at making small meal portions that I freeze. I am happy as I cook and listen to the radio with interest as to how the Mets will do. Matt Harvey was going to be pitching later and he is a budding star. I was making multiple meals. I made four fancy hamburgers. I doctored up pasta sauce with lots of onions and home made meatballs. I cooked up some beets and put fresh chives on them. I made a chicken and bean sprout dish. I am set for at least a week in terms of meals. Life is very good.

My black lab Kate loves it when I cook. I am a sloppy cook and nothing that falls on the floor is left to chance. Kate watches me like a hawk. The minute I move away from the stove top she rushes over to eat and lick the floor clean. Last night was no exception. Kate is thrilled when carrots, a bit of meat, an onion, celery or any food item hits the floor.  She is like a vacuum. I am cutting and chopping away when I notice Kate is even more interested in me than usual. She is laying down on all fours and starts to inch closer to me. Surely I am not going to notice. But this is out of the norm. I chalk her creeping towards me to the smells of garlic, onion and cooking meat. I ignore her until I realize she is directly under my wheelchair and licking the floor with gusto. Her unadulterated joy is palatable. However, inching under my wheelchair in the kitchen is not allowed. She only goes under my wheelchair when she is afraid or feels danger is nearby. Something is clearly going on. I did not drop a big piece of meat on the floor or make any other sort of spill that would cause such happiness on her part. I order her to move and I discover the source of her pleasure.  I scratched my toe agains the brick wall in my kitchen and am bleeding. I am bleeding a lot. Kate likes my blood.  Scratch that. Kate loves to lick my blood. It gives her unparalleled joy that is rivaled only by her second favorite thing to lick--cream, specifically aquaphor. What is a single cripple guy supposed to do? I need put a band aide on my toe and douse it with hydrogen peroxide. My skin and wound care kit is in my bathroom. I am still bleeding and will leave a blood trail I do not want to clean up. Then it dawns on me I need not worry. Kate will follow me all the way to the bathroom and clean the floor with joy and vigor.

My toe is fine and Kate appears no worse for the wear. I was a bit worried about her though. Licking up blood cannot be good for her but I put my mind at ease--she was her usual energetic self in the morning. Her tail was wagging away and she had love in her eyes. Her entire body was pulsing with energy and was dying for me to get up and play. What a great relationship I have with her. The bond we share is humbling. I am as devoted to her as she is to me. But I have a confession. Kate is a unique dog. Like me, she does not understand bipedal people. In fact she is terrified of steps, a fear that I find fascinating but understandable. Steps are not relevant to her life or mine. She also has no clue how to physically move around people that are bipedal. If a person is walking toward her she does not move. Not an inch. She expects a bipedal person to alter their direction. In contrast, Kate understands wheelchair movement. She knows exactly what to do once I move or any other person using a wheelchair moves. Although Kate is highly social, she prefers to interact with people that use a wheelchair. Line up a dozen people, one of whom uses a wheelchair, and she will go to that individual every time. She will put her chin on this person's thigh. This has led me to wonder about the bond I share with her. Am I closer to her than your typical, meaning bipedal, dog owner? Does she know I am different? If so, is she protective of me? Does she sense the social stigma associated with wheelchair use? Sadly, I will never know the answer to these questions. I will end with this thought as it is time to go outside with Kate and have some fun.

Tuesday, May 7, 2013

Critics of this Bad Cripple Take Note

Being a self-professed bad cripple does not endear me to everyone that runs across my blog. In fact I routinely get angry email and comments that borders on hate. I read these emails because they bother me. It has never been my intent to hurt others and I am often taken aback at how my words are misunderstood or why they prompt deep seeded anger. Regardless, my words have enraged some people and a friend once told me I piss people off in a nontraditional manner (a comment I am not sure how to take). Sometimes it is a specific post that incites angry replies; my analysis of the video Purple Feather posted in April 2011 still generates fury. Recently one reader commented:

Are you aware of what people with a disability have to live on. It's not much… Until you know anything about anyone who has to ask for help, I suggest you volunteer with the physically challenged. Learn about their life. See how they struggle to make ends meet… You have to be out of your fucking mind. I wish for you that you are incapacitated for the rest of your life (hit by a car, burned in a fire, shot in the spine… and then I'd love to see you begging on the street. I'd give you money and a very long speech on KARMA. Good luck to you. I hope you get that heart transplant that you desperately need. You're not a fucking idiot. You are cruel… When you actually learn what it's like to live with a disability then you should comment on these types of videos. Until that time. you should keep your thoughts to yourself.

Most angry email I get is associated with hot button issues. For instance, everything I have written about growth attenuation or the so called Ashley Treatment prompts a visceral response. I have gotten hundreds emails from people who rail against my opposition to growth attenuation. Suffice it to say, the email I get in this regard makes the comment above appear polite. Critical email often accuses me of not knowing anything about the subject I am discussing. In terms of growth attenuation this is partly correct. I have not raised a child with a cognitive and physical deficit and yet feel comfortable being a staunch opponent of growth attenuation. I try hard to reply to severely critical email in a neutral way. I defend my views and refuse to be baited into replying in anger.

One group of people who have consistently taken me to task are those with a spinal cord injury that have devoted much if not all their time to a cure for paralysis. I do not understand the fury that has been directed at me by those involved in what I call the cure industry or the Christopher Reeve School of Paralysis. When Reeve was injured in 1995 I grossly underestimated the impact he would have on the cultural perception of spinal cord injury. I have been severely critical of Reeve and once published a diatribe entitled “Wishing for Kryptonite” in the Ragged Edge. I will readily admit I have not been diplomatic in my criticism of Reeve and the cure industry. While I am no longer disturbed, the fact remains Reeve fundamentally altered the way spinal cord injury was perceived. Last year I wrote: Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. High tech medicine is embraced even if it is shockingly expensive and impractical. Think the exoskeleton. Reeve also helped establish the idea that if we cannot be cured today then our paralyzed bodies must be maintained in good working order. This is a full time job unto itself. It can require a staff of people as Reeve had. But it requires total dedication. A family, job, and social life is of secondary importance.

A singular focus on cure post spinal cord injury is hard for me to comprehend. Simply put, I have never perceived using a wheelchair as inherently inferior to bipedal locomotion. I do not compare my paralyzed body to a typical body. I do not bifurcate my life into pre and post injury. My utter lack of interest in a cure for paralysis was once commonplace. In the Christopher Reeve era, a belief in cure is increasingly common and is indicative of a significant cultural shift. When I was paralyzed my peers and I spoke of our future and railed against the stigma associated with our spoiled identity. Today, newly paralyzed people have no connection with old timers such as myself. Few know anything about the disability rights movement and I get a sense some expect to leave rehabilitation with a new adapted van and ADA accessible home. The lack of concern—what will I do now—worries me. Far too many people with a recent spinal cord injury make a Faustian bargain: they will focus on cure and if it does not come at some point in the future they will reevaluate their life. Too often this re-evaluation will be harsh and deadly.  Christina Symanski is a perfect example; her overwhelming negative assessment of life post spinal cord injury and decision to end her life by not eating and drinking is no longer unusual. I don’t get it. She wrote:

Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasoning as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me.  If you don't belong in my boat, please save your judgment, and just take a moment to think what you might do in my situation, and how you might want to be treated... Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be.

I too know life pre and post spinal cord injury. My life pre and post spinal cord injury have been wonderful. I have led a privileged life. Like any other person I have had my fair share of trials and tribulations. I was married and divorced, an experience I do not recommend. I had a severe skin wound in 2010 and spent almost a year in bed recovering (and many more months recovering from being in bed so long). On the positive side of the ledger I earned a PhD from Columbia University, have published widely, taught at the university level, and have had the great joy of being a father.  All in all life has been and continues to be sweet.

A cure to spinal cord injury was not relevant in 1978 when I was paralyzed nor is it important to me in 2013. For some, my lack of interest in a cure prompts anger. One of my most strident critics wrote that “I know your school, and have seen dozens of minds and spirits broken by it”. I am not really sure how I break spirits and minds by embracing an identity tied to disability and disability rights; however, this charge has been levied by others. Some comments have been very harsh. In one of my earliest posts circa October 2007, “Why Focus on Cure”, I questioned the larger significance of Christan Zaccagnino’s decision to go to China for a surgical procedure designed to cure or improve her functioning. Ms. Zaccagnino commented “I am mrs zaccagnino and you have no idea what you are talking about asshole.” Another person wrote: I pity you Bad Cripple. You preach equality for disabeled persons in wheelchairs and criticize Ms. Zaccagnino for her decision to think beyond her condition and strive for her dream of walking again. I walk on two legs and I dont consider myself Ms. Zaccagnino equal, because she is exceptional. I can only pray to have half her strength, perseverance and passion. Her will and positivity seem to be beyond what your acrimonious logic can comprehend. "Why focus on a cure?" because some are unwilling to accept anything less then their dreams. Shame on you to disparage those who dreams. Shame on you.

I remain perplexed by these comments. I have repeatedly stated a cure for spinal cord injury is a laudable goal. If a person wants to focus their life around a cure to spinal cord injury so be it. I have not nor will I ever comment on the current status of advances in the cure for spinal cord injury. People devoted to cure know far more than I ever will. But I do have the right to question and analyze the larger social significance of this effort and the impact it has on the lives of all people with a disability. I am afterall a disability studies scholar and activist. I have recently begun to wonder though if some of those dedicated to a cure for spinal cord injury are creating a cult like existence for themselves. Even the slightest criticism of the cure industry prompts a strong reaction. For instance I have recently taken some heat from those involved with Rutgers University Care Cure Forum. This website offers a dizzy array of over 70 different forums. I find little of value in the Care Cure forum despite the fact I look at it every few months (I am specifically looking at comments on sports equipment). I am decidedly uncomfortable with the praise heaped upon Wise Young of the W.M. Keck Center. “The mission of the W. M. Keck Center for Collaborative Neuroscience is the development of effective treatments for acute and chronic spinal cord injuries and to move these discoveries from laboratory to human lives as rapidly as possible.” I do not take exception to this goal but I do worry about the impact it has on the lives of people with a recent spinal cord injury. The same can be said when I look at other powerful institutions such as the Reeve Foundation and the Miami Project that push for a cure to spinal cord injury. There is a zealous following to the cure industry I am simply divorced from. I am not willing to spend my limited time searching out clinical trials when I encounter needless bias every time I leave my home. I have always maintained the problems associated with spinal cord injury are largely social. Of course some people struggle with paralysis. For instance, Symanski went into great detail about her physical struggles with her bowels and autonomic dysrelexia. I always end up returning to what Robert Murphy wrote long ago—disability is a social malady. And this is where I think our resources and efforts need to be directed. Social supports that make life possible post spinal cord injury. So to my critics I say more power to you. I wish you well and consider us to be on parallel tracks.  Go ahead and focus on cure. It is an altruistic goal. I on the other hand prefer to focus on equal rights.