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Thursday, November 13, 2014

Do Not Anger Pre ADA Cripples

My last post was written in support of my good friend and colleague Stephen Kuusisto. He is angry and upset about recent financial decisions made by Guiding Eyes for the Blind that will adversely impact the lives and careers of guide dog trainers and by extension the blind men and women who will form a guide dog team. I get his anger. I admire Kuusisto's willingness to publicly object. It would be far easier to remain silent. And, here is the rub. People with a disability who came of age before the ADA existed spent their childhoods being told what they cannot do. We people with a disability were barred from the right to an eduction until 1975. We were told we were a fire hazard and that our very existence was too upsetting to other children. With parental support, people like Kuusisto and myself fought for an education. Secondary schools were hostile to us as were virtually all colleges and universities. The general public had no idea what to do with us. One thing was for sure--our desire to lead a typical life was seen as an affront. We were uppity. We cripples had no rights. We were known to be an expensive burden that was rejecting the charitable hands that were feeding us. Hence when I became a bus buddy in the early 1980s and fought to get on MTA buses with wheelchair lifts more than once my fellow citizens spit on me. Kuusisto and I were repeatedly told what we could not do. The bias and stigma associated with disability was deeply entrenched. Even when each of us got advanced we continued to encounter one obstacle after another. The result of routine degradation and discrimination was the creation of firm resolve. Go ahead and tell me what I cannot do. I will turn around and not only accomplish the supposedly impossible but do it in a world class fashion. I not only wanted to get ahead in academics I wanted to crush my peers. Hence, we pre ADA cripples became ambitious and hard. Childhood taunts and the bigotry of adults only made us work harder. In short, we pre ADA cripples are highly skilled at defending our rights and looking out for our peers. Both of Kuusisto and I know not all people with a disability had the financial, personal, familial, and professional support that enabled us to advocate for others with a disability. For myself, I consider such advocacy a moral obligation as an unknown number of people with a disability slipped into silence and quietly lived in an institution or family home from which they never emerged.

Kuusisto and I as pre ADA cripples know our lives are worth living. Many people think otherwise.  There is no question disability based bias is rampant.  How else can one justify the existence of QUALY--quality adjusted life year--in health care. Enter Peter Singer and utilitarian philosophy. QUALY is as much about social capital as it is about economics.  Living with a disability is expensive. People deeply resent the expense associated with educating children with "special needs". I have been to countless meetings when the first line item cut had to do with making a school or university building accessible or funding a program for a small group of students with a disability.   The point is, we are living in an era of the glorification of money and power. Wealth distribution is increasingly diverted to the so called 1% Exactly how rich does one need to be? Well, for the 1% the answer is an obscene amount of wealth. Money is power. Capitalism has run amuck and the 1% does not care about anything else but money. This has filtered through our entire capitalistic system and has gripped all industries. This now includes guide dog schools. Kuusisto wrote:

By reducing retirement benefits; summarily dismissing senior staff; and pretending that these things are necessary in order to serve the blind, the new style administrators and Wall Street directors of the guide dog schools are destroying the morale and undermining the security of people who have given their “all” for blind people. 
 The guide dog schools have plenty of money. These heartless management ideas come from the current corporate driven management idea fix—that reducing investment in employees is good for the bottom line. But I say this is hogwash. And I say the very idea—the very adoption of Bain Capitalism where guide dog employees are concerned puts the blind at risk. 
I can say these things because I’m not afraid. The guide dog schools may well put me on a “do not admit” list and prevent me from getting another dog. But I can live with myself. I can’t live with the knowledge that guide dog trainers are now working in fear for their very livelihoods.   

Kuusisto has put himself in harm's away. There is no question the twelve guide dogs schools in the country could black ball him. His life could be adversely affected if he cannot obtain another guide dog when Nira retires. Let's address risk. By risk I fear a blind person will be killed some day as a result of training that did not include the expertise required. This should keep people up at night. As for the financial concerns of guide dogs schools, they have no significant worries. Give me a break. The photos of cute labrador puppies are a cash cow. In 2012 Guiding Eyes of the Blind according to Charity Navigator, total revenue was $25,793 537. Total functional expenses amounted to $22,907,296. I call this breaking even.  This is good. Very good in fact. Here is the big number, the really important number. Guiding Eyes for the Blind Net assets amount to $56,974,077. If you do not believe me see this link:
Here is more financial evidence. As a charity, Guiding Eyes for the Blind is required by law to file a form 990 with the IRS. This is a matter of public record. Read this 47 page report. I am no financial whiz but I cannot see any justification for the actions of the Guiding Eyes for the Blind.
990 link:
At the end of the day we have a social failure. What is lost is that guide dog trainers "career" is about in the words of Kuusisto the "knowledge and empathy and a profound awareness of disability in all its myriad forms". This knowledge and empathy money cannot buy. However, money can undermine it.  

Monday, November 10, 2014

A Lost Art: Changing Lives of the Better

I almost took a bad fall this morning. I was transferring from my wheelchair to my car and I was being lazy. My right leg was not where it should have been. I knew this but was in a rush and as I transferred I landed in limbo land. I was not in my wheelchair nor had I landed on the car seat. Falling to the ground was a very bad option and my brain automatically kicked into self preservation mode. I leaned heavily into the car and held on to the center console. I dragged my lower body into the car with all my power until I was relatively safe. I then reached down to lift my legs with one hand and with the other hand pulled on the center console. At the same time I twisted my torso and safely maneuvered myself on the car seat. I will be more careful tomorrow.

I did not fall because of the lessons I was taught 38 years ago.  Rehabilitation circa 1978 was hard core. Rehabilitation was a long arduous process. It was in fact a form of brain washing that was in retrospect the best thing that ever happened to me. Autonomy was drummed into my brain. Never ask for help. You must be self sufficient. I was taught how to dress myself. I was taught to make transfers from wheelchair to toilet. I was taught to turn my body every two hours all night long. I did this for many years. I was taught about skin care and until 2010 had avoided a severe wound. I was taught how to pop a curb and do wheelies. I was taught how to fall to the ground and get back in my wheelchair. I was taught how to crawl without injuring myself in case my wheelchair was out of reach.  I was taught how to get in and out my car. I did not use a model car as most rehabilitation units now use. I was taught how to transfer into my car in all condition (snow, rain and wind). I was taught to transfer on steep hills with an incline up and an incline down. Physical therapists told me to forget about life pre spinal cord injury. My old life was over and you must be fully autonomous. I was repeatedly told my new life requires creativity and adaptation. I could not rely on anyone else. To do so was to become less of a human being. Physical Therapists worked with me daily for months on end. The patient to physical therapist ratio was one to one. These young women, and they were almost all women, taught me lessons that have lasted a lifetime. They held me when I cried. They laughed with me and endured my sadness and rage. What they did changed my life. They made my life possible. They also forged a life long bond with those they worked with. Without them I would have taken a bad fall today.

Rehabilitation circa 1978 was primitive. It was an intense primal experience. Fear drove me. I hated rehabilitation but I knew it was a must. I needed to be taught how to care for my body to insure I was going to have the sort of life I envisioned for myself. I worked extremely hard. I listened carefully and pushed my body as hard as humanly possible. In long and difficult physical therapy sessions I worked out until my muscles quivered with exhaustion. My day began early and by dinner time I was mentally and physically spent. The goal was to make me independent, to master my activities of daily living. No time table was placed on me. I would be discharged when one and all agreed I was ready for a world that was hostile to my existence. Prepared I was.

Fast forward to today. Recently paralyzed people get mere weeks in rehabilitation. Many leave woefully unprepared for the real world. Most have physical therapy classes. A physical therapist will work with many people at the same time and direct physical therapy assistants to carryout her therapeutic rehabilitation plan. This is cost efficient. It is also negates the bond I formed with my physical therapists. Physical therapy is more than just about the body. It is a way of thinking about paralysis and disability in general. I learned anything is possible if you work hard enough. This belief system cannot be taught or absorbed in a group lesson.  I am not suggesting we return to the primitive ways of the past.  Spinal cord injuries, thanks to broad based medical advances at the time of injury, are far more complex and designed to limit damage. In the olden days one had a complete or incomplete injury. Today, an entire spectrum exists within spinal cord injury. No two injuries are the same. No injury is static. To be blunt the cookie cutter cost saving brand of physical therapy practiced today is ineffective. The failure to prepare men and women for life post spinal cord injury was at the forefront of my mind after I had a long chat with my friend and colleague Stephen Kuusisto. He remains deeply troubled that the premier guide dog school in the country, Guiding Eyes for the Blind has adopted to use his words "the Bain Capital model of employee management". 

Kuusisto has every right to be angry and worried. There are just twelve guide dog schools in the country. All guide dog schools operate as charities. None charge their clients for the dogs who will become part of a remarkable team. By remarkable I mean empowering. Guide dog trainers do exactly what the physical therapists did for me except they are not nearly as well paid. They change lives for the better. No job could be more rewarding. I had the deepest respect for guide dog schools. Note my use of the past tense. I am not an expert about training guide dogs. Indeed, I am far from expert. But I do know what the implications are for people who are blind. I have observed the cost cutting insurance dictated approach to physical therapy. It has devastated rehabilitation and the ability for people post spinal cord injury to resume their life. The implications for blind people are more dangerous. Without experienced guide dog trainers, who will understandably leave the profession given the lack of adequate retirement plans, one can readily imagine the knowledge acquired over time is being sucked out of the guide dog schools as I write these words. Experienced trainers could justify bad pay knowing they at least had a good retirement plan. Not anymore. Who will suffer? People who are blind.

For those interested, and that should be every single person that reads my blog, please read what Kuusisto has written at his outstanding blog Planet of the Blind. Link:
Kuusisto has generously allowed me to quote his entire post "What's Wrong with the Guide Dog Schools?" below. If you are moved by my words was well Kuusisto's words please write or call the Guiding Eyes for the Blind President and CEO Thomas Planek and let them know you support guide dog trainers and object to the Bain Capital model Kuusisto and I rail against. The general phone # is 914 245-4024.  One last point. The suggestion to call and complain was my idea and mine alone. Here is Kuusisto:

Its not easy to be an advocate for human rights because the engines of neo-liberalism smog the village square. I think history will show this is an age of ruinous acquiescence, a time when its easier to prefer convenience over complexity–a hint of Al Gore here–truth is always inconvenient.
Recently some of the schools that train guide dogs for the blind, non-profit agencies all, have adopted the Bain Capital model of employee management, laying off vital staff (translate “older” and “experienced” if you like) and several have chosen to reduce staff retirement benefits by shelving long standing retirement plans for 403B packages–plans designed for churches and non-profits. Almost no one can actually retire on a 403B plan–they're essentially “cafeteria” plans that allow employees to put aside money from their pay checks in a temporarily non taxable and limited investment fund. 
There are roughly twelve guide dog schools in the United States and all are charities. Each breeds and trains dogs for the blind. Because 80% of the blind are unemployed (even twenty five years after the adoption of the Americans with Disabilities Act) the guide dog schools provide dogs to blind clients free of charge. The cost of a guide dog is guess-estimated to be around $40,000 per unit–that is, per finished product–a successful dog and person team. It's expensive work. Puppies must be bred, then raised until they're old enough for training at about a year and a half. Training requires 6-8 months of consistent, daily work by professional guide dog trainers who teach dogs how to navigate country roads and inner city traffic, all the while encouraging each and every dog to trust its instincts and recognize it must often think for itself and countermand its human partner's orders. 
Guide dog trainers have demanding jobs: they work in rain and snow. They walk thousands of miles a year. Moreover they undergo a long and poorly paid apprenticeship with a senior trainer to master the rare skills necessary both to train exceptional dogs and work with blind people. When they finally become guide dog trainers after years of brutally hard work they're still paid rather poorly. The average guide dog trainer makes a salary roughly equivalent to the earnings of a high school teacher. But the rewards of guide dog training are great. You work with dogs, help people, and change lives for the better. 
In former times a guide dog trainer could imagine having a career. Although they were poorly paid, they could count on a solid retirement plan. In general guide dog schools valued veteran employees who possessed long experience working with the blind and their dogs. 
Enter neo-liberalism: “capitalism with the gloves off” as Robert W. McChesney calls it. 
Two years ago “The Seeing Eye” (the oldest guide dog school in America) suddenly fired over twenty long time employees–trainers, field representatives, even a veterinarian. The fired staff didn't even have time to clean out their desks. They were simply told not to come back. 
Following suit, “Guide Dogs for the Blind” a famous school in California eliminated staff. Later, after protests, employees there were reinstated. 
If you're blind and travel with a guide dog you count on veteran staff: folks who know the complex and challenging circumstances of vision loss and safe mobility. Additionally you want to be assured those who work with you–support you–are being taken care of. 
Now “Guiding Eyes for the Blind” –the guide dog school from which I've received three guide dogs, and where I once worked, where in fact I played a role in hiring some extraordinary people, has announced summarily, without warning, they're eliminating their retirement benefits plan in favor of a second rate 403B. 
In this digital age with its “Instant Karma” public relations administrators can say almost anything. When I posted my dismay about Guiding Eyes treatment of its employees, one PR person wrote on Facebook that the new retirement plan was long studied and it was necessary to ensure that guide dogs can be provided free of charge to blind people. 
The guide dog schools I've mentioned have combined endowments in the neighborhood of 700 million dollars. I'm not convinced cutting veteran staff and making it harder for people to achieve a career is necessary at all. What I am convinced of is that the justifications of neo-liberalism have become the narrative template of management in our time. Everything should be lean and mean. 
The alumni of the guide dog schools can't really protest. They're not cash paying customers like college alums. Many guide dog users fear criticizing the schools will hurt them–they'll be branded as “difficult” or “disloyal” or “uppity”. 
Right now I'm finishing a book about guide dog life for Simon and Schuster. I've been a loyal and upbeat spokesman for the guide dog movement for years, appearing on national TV and writing widely on the advantages of traveling with a professionally trained dog. 
I fear for my friends who train the dogs. I dare to say so. 

Sunday, November 9, 2014

Too Nice?

One of the very few things I do not like about my little rental home is the lack of a washing machine and dryer. I was initially worried. Last academic year when the Red Roof Inn was my home away from home I used a laundromat in East Syracuse. I was not impressed. The cleanliness was far from ideal and the machines were ancient. However the same company has a laundromat in my town. Thankfully the local laundromat is exceptionally clean and, better yet, has free wifi. I do my laundry once a week and as winter sets in will likely do laundry twice a week. I do not mind this one iota however I am careful when I do laundry. Prior to day light savings, I did laundry just before or after sunrise on Sunday. I rarely interacted with others as I was done by 7AM--and yes this was design. I continue to think of times the laundromat will be empty. Given the little college that is in town, night time treks are a bad idea. I have no interest in interacting with college students. I love college students but that love is restricted to the classroom where they are on their best behavior. Post 7AM mornings on the weekend are a bad idea--especially on Sunday as the holy rollers are likely to want to pray for me. Being an anonymous cripple takes some advanced planning, flexibility, and creativity. I have been very lucky to date. I have come across a few college students who had inhaled too much, a few men my age who were very drunk, one parent that was dreadful, and more than a few people who looked like they had a hard time scratching enough cash together to do laundry. There many people down on their luck in the Syracuse area. The poor abound in fact.

My laundry luck ran out yesterday afternoon. I had a lot of laundry--much more than usual. I put my laundry basket on my lap and it is was over flowing and stinky. Dirty clothes and towels were piled up to my neck. I can manage the double doors but it is a somewhat slower process than normal. As I get through the first set of doors a man is standing in my way in an effort to hold open the door. His timing was bad as I was half way through doorway and he really was simply acting as an obstacle. Of course this being central New York the man and his wife who prompted him to "help" is overly friendly. I politely ask that he move aside. I look at him and then his wife sitting at a nearby table. I am screwed. I have encountered Mr. & Mrs. Too Friendly and Eager to Help. I take my dirty clothes to the most distant machine and I am asked "Can I help you put the laundry in the machine?" I politely say "no", being sure to use a neutral tone and not respond with a thank you. I proceed to load the machine and I am then asked "May I help you put the money in the coin slot?" Again I reply with a flat no with the thank you absent. This exchange of questions plays out not just once but twice as I used two washing machines. I do my level best to ignore the couple who watched me like hawks hunting while riding the thermal winds. So much for a relaxing hour. As expected as the machines finish the wash cycle I am subjected to the duplicated offers of help. "Do I need help with the laundry cart? Do I need help loading the dryer? Do I need help putting the coins in the slot? Do I need help folding my clothes? Do I need help getting to the car? Do I need help with the doors?" Each and every answer was met with a simple no. No was the only word I spoke. At no point did they get the obvious message. I do not need nor do I want help. I do not want to engage and by gosh they were desperate to engage.

I suspect every person with a disability has been accosted by such do gooders. Such do gooders are not being helpful at all. In fact they have no interest in helping. What such do gooders are really doing is asserting their social and physical superiority. These social interactions are tiresome. Do not misunderstand me. I do not mind helping others and once in a while I appreciate some help. But the help I accept is based on equality and a sincere offer. I often hold doors open when it is raining. I appreciate it when a person  offers to close my car door on a rainy day. I was not being offered help at the laundromat. The help the couple wanted to deliver came with certain expectations. Help was based on the assumption I was not competent. I was a dependent and inferior human being in need of charity.  Once help was accepted my life was an open book for them to question. I have had this experience thousands of times and in every state of the nation. It pissed me off 38 years ago when I was first paralyzed and it pisses me off today. The only difference is I have the social skills to cut people off from asking all the intrusive and rude questions they are so eager to ask. Believe me, this couple was desperate to learn facts they would not dream of asking a person who did not use a wheelchair.

The exchange described above made me realize the hardest part of living in the Syracuse area is getting accustom to interacting with overly friendly people. I am a New York City kind of guy. I do my best to never make eye contact. I move fast and keep my eyes directed forward and down. I do not stop if humanly possible. I am a point A to point B kind of person. I am gruff and quick to cut someone off. When going up a curb cut I pick up a lot of speed and assume the person standing in my way is going to move once they get the idea I am not even thinking about slowing down. News flash to bipedal readers: lateral movement using a wheelchair is not possible. None of this goes over in certain areas of Syracuse. I cannot make it across campus with my lab Kate without an undergraduate saying something to me about the dog she or he left behind. To not engage in a brief conversation would be deemed rude. At Wegmans. the best super market in the world, employees and customers are routinely nice. I need to move much slower than I want to duplicate a typical bipedal pace. When I eat out at a restaurant I am usually asked "Where would you like to sit?" In New York City when I go a restaurant I am directed to the cripple table. The one table, usually the worst table in the house, is where all wheelchair users sit. This is not subtle and more than once I have left a New York City restaurant in disgust.

The above may sound like minor social differences but they are not. The cultural mind set in Central New York is different. I have to think differently every day. This has been by far the hardest adjustment to living out side the New York City bubble. Truth be told I miss New York City a lot. I want to be an anonymous human being in a crowded deli like Zabars; elbows out and parrying with little old ladies who use shopping carts as weapons. I want good rye bread still hot from the oven. I want New York City pizza. I want to wonder around the American Museum of Natural and Metropolitan Museum of Art. I want to ride my bike down the West Side bike trail. I want to people watch on 5th avenue as masters of the universe speed by with a cell phone surgically attached to their ear--the men in expensive business suits and women in power heels and skirts. I want to use the reading room at Columbia University Butler library. I want the hard edge of life. I like that toughness. Raw emotion instead of formulaic politeness. Ah, the thoughts that pass through your mind on a Sunday when you are vacuuming and mopping the kitchen floor and bathroom.  Truth be told: I lead a solitary life I never expected and I often think of the title of Harriett McBryde Johnson's wonderful memoir Too Late to Die Young. I never imagined the life I have led and look at the sunrise and wonder daily how the hell did I end up here. Life is indeed an eternal mystery.

Friday, October 31, 2014

Brittany Maynard: Assisted Suicide is Not a Personal Act

 I am opposed to assisted suicide legislation.  In the last month end of life in the form of assisted suicide has been at the forefront of my mind thanks to Tim Bowers and Brittany Maynard. Maynard's story has gone viral and millions of people have seen her video created with the assistance of Compassion and Choices. Bowers was briefly in the news a year ago. Bowers was an avid hunter who fell from a tree stand and experienced a severe spinal cord injury. He died within 24 hours of the injury. What makes Bowers death unusual was that his family requested heavy sedation be lifted so he could decide if he wanted to live or die. Bowers chose to die.

Any nuanced effort to analyze why Bowers died immediately after a spinal cord injury is perceived to be in bad taste if not cruel. Any criticism of Maynard’s highly public end of life replete with two tear jerking videos is also thought to be cruel. How can one criticize Maynard and others who are terminally ill? Criticism is needed. Without criticism and serious discussion end of life issues will remain obscured. This criticism is not about Maynard or Bowers directly. I do not in any way criticize the Maynard or Bowers families. Maynard can legally die in Oregon via the Death with Dignity Act: that is her legal right. Bowers family had the legal right to ask Tim Bowers if he wanted to die. Both the Maynard and Bowers families did what they thought was right. Again, I do not question this. Maynard and Bowers were loved by their families. I accept this as a given and they have my deepest sympathies.

Like a few others, I take exception to the slick Compassion and Choices PR campaign.  I decry the romantic vision of death and extreme emotional hype the media has used to generate news ratings.  I despise the lack of reason involved. I am deeply disturbed that neither Bowers nor Maynard has generated the sort of serious discussion that desperately needs to take place.  I question why did Bowers die? Why was autonomy so narrowly perceived?  Why was life post spinal cord injury  believed to be a fate worse than death?  These are questions, social problems, that need to be addressed. It is not an exaggeration to note lives are at stake. Bowers did not want to live in a nursing home.  What young married man would want that? None. This is the leap of logic no one took—why do people with an injury as severe as what Bowers experienced live in a nursing home? Why do the vast majority of people with a disability remain unemployed? Why is poverty and disability commonplace? I can only conclude the ADA, and the last 40 years of progressive legislation designed to empower people with a  disability, has been a legislative success and social failure.  Simply put, laws that were supposed to make people with a disability equal have not resonated culturally.

Maynard’s end of life options, like the choices Bowers encountered, are not good.  End of life, especially assisted suicide, is perpetually in the news.  What makes Maynard different is the extreme emotional manipulation. Rather than asking how can we empower people with a terminal illness to get the most out of life via outstanding palliative and hospice care we frame the discussion around the right to die. Dying is not a right. Dying is a biological inevitability. No one dies in a social vacuum.  The extreme emotional framing effectively negates any real discussion of the social implications of assisted suicide as practiced in Washington and Oregon.  Even the slightest dissent is met with a backlash. For example, Ira Byock suggested Maynard could have the peaceful death she desires via palliative and hospice care. He suggested she need not take a lethal medication. I thought Byock was deferential but Maynard lashed out and stated she was concerned  that Dr. Ira Byock will speak on my behalf and that as a terminally ill patient I find it disrespectful and disturbing when people discuss my personal health with details that are not accurate to push an agenda”. Byock did not speak on Maynard’s behalf but rather suggested other viable options existed. The person with an agenda is not Byock but rather Maynard. This is not a critique but a matter of fact observation.  In this regard I am no different from Maynard—we share oppositional agendas. We are both acting as advocates. We both have the right to state our opinions. 

Lost in emotional rhetoric are the social, political, and health care ramifications of assisted suicide legislation. Kevin Yuill, in Assisted Suicide, wrote:

The right to die sought by proponents of legalization of assisted suicide is not a right or freedom at all. It is a heavily regulated process that will undoubtedly become more and more regulated with so many safeguards that those who suffer at the end of life will be worse off… The death bed scene will have to be regulated if it is to be transparent. The actions of relatives and doctors alike may have to be monitored. The time-honoured tradition whereby doctors occasionally bring relief to suffering patients in their last few hours or days will be brought under official control… Once bureaucratized, there will be no space for compassionate deeds… Thus, ironically legalizing assisted suicide may well be worse for the dying.  Whereas we might impute the noblest reasons to those campaigning for a change in the law, the devil is in the details.

Byock is correct in stating “physician assisted suicide is not a personal act. It is a social act”. If this social act becomes as bureaucratized as Yuill suggests no person near death will benefit from assisted suicide legislation. This is exactly the sort of discussion we have failed to engage in. Reason is replaced by emotion—Maynard is an extreme example of this.  No one is questioning her personal health care choices.  To do so would be wrong.  As Yuill noted the devil is in the details. I want to those details to be subject to intense discussion.   

Sunday, October 26, 2014

I Did Not Say it But I Did Think it.

I like to read various feminist websites. The range of views expressed is remarkable as are the topics of discussion. One website I often read is XO Jane. Two days ago XO Jane had the nerve to publish "Do We Care About Brittany Maynard's Right to Die Because She's Hot" by Beejoli Shah. Link: Here are a few juicy quotes:

Regardless of where you stand on assisted suicide, an issue as controversial as this deserves careful thought before being opined on, and one thing becomes glaringly obvious the more I read her story: We care about Brittany Maynard because Brittany Maynard is beautiful.

Look around at every news story recapping Maynard's journey. despite the copious amounts of video blogs and news interviews she's sat for recently--ones where you can see the toll terminal brain cancer has taken on her body, including slowness of movement and cancer related weight gain--many outlets choose to use old photos of Maynard, ones where she is laughing at her wedding or curled up with her husband on vacation, rather than ones that reflect how she looks now. In particular, People raised eyebrows among celeb weekly editorial newsrooms when they ran an air brushed and photoshopped picture of Maynard on their cover last week.

Shah reviews well know figures in assisted suicide and that came to public attention. Louise Schaefer, Peggy Battin, Barbara Mancini and more distantly in terms of time Jack Kevorkian. What makes Maynard different in Shah's opinion is "her narrative is better because she photographs better." 

Harsh words by Shah and I will merely point out that sometimes the truth hurts. I think Shah is spot on here. I have no interest in hurting Maynard. She has my sympathy as does her family. I wish them all the best at this difficult time. My point is that the sensationalism associated with her narrative is an indictment of American culture. Sensationalism has replaced a sober and serious discussion about how Americans will die.  Sensationalism generates ratings and sells news papers and magazines. What sensationalism does not do is help any human being, including Maynard, when they need to think about end of life choices.

Saturday, October 25, 2014

Brittany Maynard Lashes Out at Ira Byock

Last week Diane Rehms had Ira Byock and Barbara Coombs Lee on her nationally broadcast NPR radio show. Byock is one of the nation's leading palliative care physicians and author of Best Care Possible. Coombs Lee is president of the advocacy group Compassion and Choices, the well funded and influential lobbyist group that advocates for assisted suicide. As is the norm, the Diane Rehms show was heavily biased in favor of assisted suicide. Coombs Lee spoke at length and Byock was given very little time to respond. Again, this is the norm. Byock is accustom to this having appeared on PBS News Hour, 60 Minutes, and the aforementioned NPR radio program. I have met Byock twice. He is a kind articulate man and like many others is opposed to assisted suicide legislation. Those that oppose assisted suicide legislation voices are unwanted. Those opposed to assisted suicide legislation are given short shrift by the mainstream press. We depress people. We want to have a nuanced debate about end of life issues. We want a rational discussion to talk place in an effort to insure all people die well. This is not the sort of discussion people typically engage in. The mainstream press wants powerful and emotional stories. Enter Compassion and Choices replete with great visuals of dying photogenic people with heart breaking stories who want to complete their so called bucket list. The most recent terminally ill person Compassion and Choices has formed a PR campaign around is Brittany Maynard.

I wrote about Maynard and her video and photo shoot for People Magazine. Millions have watched her tear jerking video--it is exceptionally moving. Maynard has a devastating terminal illness. My heart truly goes out to her and her family. There is no question she will die far too young. None of these facts and sentiments are in doubt. In making her death about assisted suicide legislation Maynard chose to become a public figure. She is making the rounds at many news outlets and was recently at the Grand Canyon thanks to People Magazine. Below is a photograph from her trip published by People.

Maynard's story and advocacy for Compassion and Choices can be questioned. She has purposely opted to have a highly visible death. She has foregone privacy in an effort to advocate for assisted suicide legislation for every American. Given this, I think those that agree and disagree can freely comment on how Compassion and Choices is using her to advocate for assisted suicide legislation. Maynard is a political advocate. I find it impossible to believe she and her family are unaware at how influential she is or how powerful the images associated with her life and terminal condition have affected people. Her video went viral and has been seen by millions of people. Maynard via Compassion and Choices has not highlighted the soon to be tragic end of one young woman's life far too young but rather push legislators to pass assisted suicide legislation. To question her motives however is exceptionally difficult. The slightest critique is perceived to be in bad taste. For example, Byock stated: "I think, unfortunately, while not being coerced, she's being exploited by Compassion & Choices, as well as by the media's insatiable appetite for sensationalism. And I think that's a tragedy. I worry what will happen if she--her life still feels worth living on November 1. Will she then feel compelled to end her life in order to meet the public's expectations? I really worry this woman who is vulnerable and going through a wrenching time in life. And I--frankly, I wish her all the best". Like Byock, I wish Maynard the best. I cannot state this emphatically enough. I do, however, object to the blatant political actions of Compassion and Choices and exploitation of Maynard on the part of People magazine.

Brittany Maynard was angered by Byock's gentle critique or the circumstances surrounding her death.  She lashed out with the below comment:

I am Brittany Maynard and it concerns me that Dr. Ira Byock will speak on my "behalf" at all again. I watched a special on PBS where this same individual spoke about my case as though he knew personal details about me, saying some things that were quite frankly not true. For example, he said that a gentle death would be available to me easily through hospice, unfortunately that would be after a great length of time, with lots of suffering (physical and emotional), and loss for my young body. He is right that this is not being accomplished successfully for many terminally ill Americans on a widespread basis across our country. This needs to change too, I agree with him there. But perhaps most disturbingly, Byock claimed that Compassion & Choices had somehow taken advantage of me through "exploitation" and that I feel compelled to die now based on public expectations. I DO NOT, this is MY choice, I am not that weak. The day is my choice, I have the right to change my mind at any time, it is my right. I am very confident about this. This is a patient right that is critical to understanding Death with DIgnity. The claim of exploitation is utterly false considering I had gone through the entire process of moving, physician approval for DWD, and filled my prescription before I EVER even spoke to anyone at Compassion and Choices about volunteering and decided to share my story. I support the organization because I support the cause. I believe this is a healthcare right and CHOICE that should be available to ALL terminally ill Americans. I made my decisions based on my wishes, clinical research, choices, discussions with physicians, and logic. I am not depressed or suicidal or on a "slippery slope." I have been in charge of this choice, gaining control of a terrifying terminal disease through the application of my own humane logic. We as a country have real issues with the way doctors are trained to speak about, educate and embrace realities of death. As a terminally ill patient, I find it disrespectful and disturbing when people discuss my personal health with details that are not accurate to push an agenda. My request is that physicians speak only what they directly know to be factually true and have a right to discuss. The best change for all our community, physicians and patients, will come from us pulling together and developing policies to protect the severely ill based on honesty, education, and humane treatment of suffering. I wish nothing but peace and healing for whom it is available, and a peaceful passing of comfortable choice for whom it is not.

Byock publicly apologized to Maynard. Many have come to the defense of Byock. For example, Not Dead Yet released a press statement defending Byock. Link:
Byock is not commenting on Maynard's prognosis or health status. Byock commented on Compassion and Choices national on line video campaign designed to expand existing Death with Dignity Laws. Like Byock, I have the right to disagree with what Maynard has said. What Maynard does not want to acknowledge is that her impending death is, thanks to her decision to join forces with Compassion and Choices, a publicly debated event. Compassion and Choices PR campaign squarely centered on Maynard highlights that no person dies in a social vacuum. Death, especially an assisted suicide, is a social act. Here is what Maynard and Compassion and Choices dismisses: "There is no universally right way for a person to die. What constitutes dying well for one person might be entirely wrong for another. The word 'well' is both an adverb and an adjective. It can describe not only the dying process but, more important, the person who is dying". This quote can be found on page 81 of Byock's The Best Possible Care.

Maynard wants all Americans to be able to die worth dignity. I share that sentiment. The problem is that our ideas of dignity are radially different. Dignity like autonomy can mean many different things.  If I modeled my life around the current Death with Dignity Laws I would not exist. The reasons cited by those that choose to die in Washington include the loss of autonomy and dignity. Others concerns include losing control of bodily functions, being a burden on friends and family and concerns about pain. I have experienced each and every one of the aforementioned concerns. I have lost a degree of autonomy because I cannot walk and use a wheelchair. Many think my life lacks dignity. I have tenuous control of my bodily functions. I have without question periodically been a burden to my family. I worry about the pain I experience and am very concerned about being a burden to my son at the end of my life. You know what this makes me? Human. I am a human being! All life has value no matter how compromised or different. I valued my existence as a typical little boy. I value my existence as a middle aged crippled man. I value all people--typical and atypical. I value medically stable people. I value the last few hours of those alive and approaching death. Every last breathe I value. If you question this go read Dylan Thomas famous poem "Do not go gentle into that good night".

Friday, October 24, 2014

A Nasty Confrontation

I avoid confrontation. In my experience nothing productive comes out of a heated confrontation. This belief was reinforced Wednesday night. Wednesday is my long day. I meet students in the morning, teach an honors class in the early afternoon and then have a long graduate class in the late afternoon. My graduate class ends at 6:30pm. A long tiring day but on most occasions is exhilarating because I am blessed to have outstanding students. So, last night I was going back to my car more tired than usual given my trek back home from San Diego. I crossed Marshall Street, sort of college student restaurant row, and see a car parked on the side walk making passage pretty much impossible.  Thankfully the driver is present. A young woman is standing by the car. The driver door open and it is  obvious the woman is gathering her things post delivery (the Sliders logo and sign are dead give aways). I wait annoyed and silent. She looks at me and is instantly annoyed by presence. In a tired but firm voice I ask her to please move her car off the side walk so I can get by. My request is met with an annoyed or mildly mad "no". A bit taken aback I state I cannot get the car. She replies "yes you can. Have dog walk in front of you".  I will admit I might have been able to get by the car but the margin of error was razor thin. I had a heavy brief case on my lap and did not want to take even the slightest risk given it was pretty dark. I  reiterated I could really not get by. At this point, I was somewhat exasperated. In the same tone I asked "please move your car." I was doing my best to cut this woman slack. She likely was being paid minimum wage as delivery person for Sliders restaurant  located across the street. My request was met with open hostility. She went from annoyed to angry. She atto =d her ground not moving her car. I was not moving either when she said "Why do you have to be such an asshole?" I never dreamed the situation could escalate so fast. I will readily admit I was obviously extremely annoyed but I am good at retaining my poise. I stated yet again "Please move the car You can move it back when I pass by". She responds in a loud voice "Why do you have to be such a fucking asshole?" I am stunned. I tell this woman "what do you think will happen if I go to your restaurant and tell the manager what you just said to me. Move the car." Thankfully a pedestrian was walking by and had heard our exchange. This man was fully supportive of me. I looked at him and asked him if I was missing something. "No" he replied "hold your ground. She is being a jerk and inappropriate. If you want I will go to the restaurant with you to complain". Now out numbered the woman, after a long pause of silence, huffs gets in the car and begrudgingly moves her car about four inches off the sidewalk. As my newly acquired friend watches I pass the parked car. When I am well clear of the car I hear the woman slam her door and yell at me "Do you really need to be such a fucking asshole" and storms off back to the restaurant.

I am pretty torn up about what took place. I did not incite the incident. I was annoyed and tired. I could have been more polite. And here is where I force myself to stop and say no. This line of reasoning is wildly wrong. I did nothing wrong.  The woman parked her car illegally. She reacted badly. The confrontation was needless. I did not have the heart to complain and believe me I thought about this long and hard before I got in my car. Surely if I met the manager the woman would have been fired. Frankly, she deserved to lose her job. But it is mid terms week. She is working a minimum wage job that pays poorly. Being a female delivery person cannot be easy and I assume she is harassed often. I have lots of excuses for not going to Sliders to complain. I have replayed this confrontation many times in my head. I have concluded that this woman's anger is symbolic of a much larger issue--specifically an unspoken anger and fear of disability. The unarticulated anger was directed at me because I am the physical representation of all things disabled (think blue wheelchair logo sign as my self portrait). Like it or not wheelchair access is not valued and seen as an economic drain by many. Not all but the majority. Fear is involved because one and all know the disabled are a minority group that can be joined via one misstep or car crash. Both anger and fear are destructive and the under current can rear its ugly head at the oddest places and at the oddest times. I was in the wrong spot at the wrong time. I learned a lesson. Too bad the woman in question did not.