Mass Transportation NYC Style

I love to travel despite the fact I routinely encounter trouble accessing mass transportation systems. As I have detailed in many posts the airline industry is inherently hostile to any person with a disability. Trains are hit and miss at best. Buses are the most reliable form of mass transportation in my experience. Access issues vary widely from one city to another. San Francisco, Portland, and Seattle are relatively easy to navigate. At the opposite end of the spectrum is New York City. Aside from MTA buses the train and subway are difficult and time consuming to use. Forget about taxis. Mayor Bloomberg has made it crystal clear the city has no interest in making taxis accessible. While MTA buses are reliable they are slow. The most efficient way to get around New York City is the subway system. Good luck with that! I try to use the subway at least a few times a year. Rarely have I been successful. Few stops are accessible and even if an elevator is present at a renovated stop they are usually not operational.

None of the above is news to a person that uses a wheelchair in NYC.  I mention because the New York Times published a good article and video about navigating the city. See http://www.nytimes.com/2013/01/17/opinion/the-long-wait.html Jason Dasilva breaks no new ground here. Two decades after the ADA was passed accessing mass transportation in the city is a challenge. Dasilva, an independent film maker, lives in Williamsburg Brooklyn. In a short Op-ed film Dasilva leaves his home for the Union Square area in Manhattan, a typical trip for a resident. Dasilva's journey though is not simple or efficient. It takes him nearly 90 minutes to make a one way trip. Dasilva's friend made the same journey in less than 15 minutes.

It is films like Dasilva's and my own experience navigating mass transportation systems nationwide that make me aware of the fact I am disabled. It is not my disability that is the problem but the refusal of mass transportation systems to accommodate a wide range of disabling conditions. At no point in my life am I as aware of social barriers than when I access mass transportation. Elevators are routinely broken or simply non operational for unknown reasons. Employees are often rude and dismissive. Virtually no one has a clue about how to navigate a terminal or can locate accessible routes. Even when present accessible routes are convoluted. Curb cuts in one place handicapped parking in another. The net result of decades of hassles is that I am convinced we as a culture do not value access. I have felt and continue to feel as though I am on my own. My fellow passengers are never supportive. Employees  of mass transportation systems are not pleasant. Nasty employees are hardly uncommon. Ignorance abounds.  This is not just a "long wait" as the NY Times article is entitled. The issue is needless barriers are created and supported by a social system that does not value my presence.

Belgian Suicide: Marc and Eddy Verbessem

Stephen Drake at Not Dead Yet has published two blog posts about the suicide of Marc and Eddy Verbessem. Assisted suicide has been legal in Belgium since 2002. The Belgium Act on Euthanasia as I understand it requires a person seeking assisted suicide must be  in a "medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, resulting from an incurable disorder caused by illness or accident". As Drake has pointed out, media reports are hardly comprehensive and the exact circumstances of the assisted suicide has not yet been made clear.  I doubt the Verbessem brothers qualified for assisted suicide. While many interested in this unusual case will focus on the legal implications, I am far more interested in the cultural ramifications. The implied message the Verbessem assisted suicide is not hard to assess: death is preferable to life as a blind deaf person.  This line of logic is not uncommon when disability of any sort enters the equation.  Long ago it was widely accepted that a person that experienced a cervical spinal cord injury could not have an acceptable quality of life. This as most readers would agree is simply wrong. The same can be said of the decision that led to the suicide of the Verbessem's. The National Federation of the Blind President,  Dr. Marc Maurer released the following power statement:

 This disturbing news from Belgium is a stark example of the common, and in this case tragic, misunderstanding of disability and its consequences.  Adjustment to any disability is difficult, and deaf-blind people face their own particular challenges, but from at least the time of Helen Keller it has been known that these challenges can be met, and the technology and services available today have vastly improved prospects for the deaf-blind and others with disabilities.  That these men wanted to die is tragic; that the state sanctioned and aided their suicide is frightening. 

Frightening is apt. The Verbessem's were not unique. Many people who are blind and deaf live long productive lives. The only thing that makes the Verbessem's unusual or unique, is the way they died. Many news reports I read used the word "mercy" to describe the assisted suicide. Based on comments I read that accompanied news stories, many will perceive this to be a perfect example of a mercy killing. Hundreds of stories have been published in the last few days. Not a single story I could find included a quote from a person that is blind and deaf. Not one. To me this is a perfect example of disenfranchisement. It also illustrates how badly disability is understood. This is hardly a new phenomenon. Children are taught about Helen Keller. The film the Miracle Worker is considered a classic. Most know about Keller's supposed heroic ability to adapt to her disability. Precious few people know Hellen Keller was an ardent socialist. She wrote:

I had once believed that we are all masters of our fate - that we could mould our lives into any form we pleased... But as I went more and more about the country I learned that I had spoken with assurance on a subject I knew little about. I forgot that I owed my success partly to the advantages of my birth and environment. Now, however, I learned that the power to rise in the world is not within the reach of everyone.

Keller is spot on about power or the lack of power. The wider lesson associated with the Verbessem assisted suicide is we live in a society that dis-empowers people with a disability. We are too often set up to fail because adequate social supports are absent. Couple this with rampant disability based discrimination and the consequences can be deadly, particularly in a county such as Belgium that enthusiastically embraces assisted suicide. Perhaps this case is a harbinger of the future in the United States if assisted suicide is widely accepted. A grim thought.

Charity, Tragic Models of Disability

This ad is striking to me. It reminds me of the 1990s. More specifically it reminds me of 1995 when Christopher Reeve sustained a spinal cord injury. Suddenly spinal cord injury was news worthy. Reeve was the perfect man to put a face on spinal cord injury. When people thought about Reeve the thinking was very specific--Reeve took on the part of tragically crippled man. He played this part to absolute perfection. He used a large power wheelchair and was a vent dependent quadriplegic. This image, tall vibrant man paralyzed, could not be any better. Better yet, Reeve was well liked in Hollywood, had connected friends such as Robin Williams, a beautiful wife, and children. The more perfect he was the more tragic his injury became. Reeve oozed sincerity and dignity. The mainstream media gushed about Reeve's courage and will power. Reeve had a single interest--cure for spinal cord injury. He created a multimillion dollar foundation in his name devoted to cure and cure alone. Over night Reeve became the go to guy when anything tangentially associated with spinal cord injury was discussed in the mainstream media. He essentially cornered the market on spinal cord injury with his single minded dedication to a very narrow and specific focus--cure. This single minded quest fit perfectly with the cultural perception of disability. Disability is bad and all people with a disability want to be cured.

For quite sometime I refused to comment about Reeve. I readily admit I silently seethed in anger. No one could be so deluded or selfish I told myself. Reeve at some point will get it. Reeve never got it. To me this is the real tragedy associated with Reeve. He was a singularly destructive force in terms of disability rights. Reeve never grasped the most important aspect of disability: disability is a social malady. Disability is at its very core a civil rights issue for all people with a cognitive or physical deficit. The problem is not our unique physiology but society's refusal to negotiate our difference. Reeve never embraced nor understood disability rights. Instead he embraced the role of tragically crippled man. More than once he stated he was not interested in wheelchairs, ramps, elevators, etc. He believed he was different. Unlike others with an identical injury, Reeve was fawned over. In distancing himself from the social aspects of disability he embraced a medical model of disability with a twist. He wanted to be cured and had no interest in anything else but a cure. Rehabilitation? No thanks, I want to be cured. He created what I call the Christopher Reeve School of Paralysis that has adversely affected the lives of people that experience a spinal cord injury. Rehabilitation after a spinal cord injury is cursory today. A new outlook has emerged. Get them in and get them out ASAP. The fact newly injured people are ill prepared to care for themselves or have an appropriate wheelchair or wheelchair cushion is not relevant. People who experience a spinal cord injury live in limbo--a liminal state. They are paralyzed for sure but are now willing to wait until a cure is found. Thus the focus becomes maintaining their body for the glorious day when they can walk again. This mind set enables the cure industry to gets its hooks into people totally unfamiliar with disability. Enter silly and unproven devices such as the exoskeleton used at rehabilitation centers.  Rehabilitation centers once empowered people with a disability now they set people up to fail. Long ago, rehabilitation was about one thing--maintaining your independence and learning how to care for a paralyzed body. This was hard work and boring. The profit margin was nonexistent. Rehabilitations stays were prolonged, months. Medically this likely was not necessary however it awarded newly paralyzed people time to adjust physically, mentally and socially to their new status. In looking back extended rehabilitation was akin to living in a halfway house. It gave structure and a safety net. Through trial and error one adjusted. This is all gone.

The above thoughts were prompted by the terrible video clip above. Reeve's legacy lives on. This ad is a classic example of how such demeaning tactics to raise money work.  I simply wish such videos were a thing of the past; a period piece in which we shake our collective heads and wonder what was I thinking. So I wonder and worry. What sort of life lessons are paralyzed people being taught today. Will we create people like Christina Symanski who died a slow agonizing death via starvation and dehydration? Will people stop living and instead wait for a cure that is not likely to come in their life time?  Gloomy thought on a lovely snowy morning in New York.

I want to be very explicit: the cure for spinal cord injury is a laudable goal. I am fully in favor of research for a cure to spinal cord injury. I am in favor of medical research designed to improve the quality of life for people with a spinal cord injury. I am in favor of technological developments in durable medical goods--that is improving mundane but critically important and empowering products such as wheelchairs. What I am opposed to is ads such as the above.

FATE DOESN'T ASK. IT COULD ALSO BE ME. OR YOU.

What does the above tag line mean? Paralysis is bad. Very bad. Paralysis should be feared. Some may feel it is even a fate worse than death. How do I know this? Strangers have told me this many times. People that are paralyzed are screwed, they deserve our pity. People who are paralyzed are sick all the time. They cannot work. They cannot do not do many of the routine things that makes life enjoyable. Forget about sex or marriage or having a child. Paralysis negates such life experiences. But wait there is a symbolic protection readily available: give money to wingsforlife and you will not only feel good but fate will spare you the experience of paralysis. The more you give the more you are protected. The more you give the better you will feel.

The cure industry is dependent upon fund raising tactics I find offensive. The dichotomy I see is hard to miss--charity versus a civil rights perception of disability. For a charity, the more pitiful a figure appears to be the more money one can raise. The ad above tries to be modern at a superficial level. The man depicted is distinguished looking. He has rugged good looks. He was a former 13 time Formula 1 Grand Prix winner. Note the tense--was. The real message is what a tragedy! This once vibrant and virile race car driver is paralyzed. This is a slick and effective form of charity. The public soaks this up like nectar of the gods. Paralyzed people hate this sort of imagery. I hate this ad. What the public does not know is that for over 40 years people with a disability have tried to dismantle a charity based understanding of disability. That is disabled people are unlucky and in need of charity, society's largesse. Millions of people with a disability need our help. Charities are there to fulfill the needs of people with a disability. Surely all people with a disability want to be cured. Who would want to spend the rest of their life in a wheelchair? This makes no sense. So let's fork over our hard earned money to those in need. Wow, I feel good too! I have earned some psychic protection as well. What a sweet deal.

People with a disability do not need charity. People with a disability need equality. People with a disability need society to understand a fundamental concept: disability rights are akin to civil rights. They are one in the same. Legislation in the last 40 years has sought to empower people with a disability. This legislative approach has largely failed. The social model of disability has failed as well. Disability is first and foremost a social problem, a belief that has utterly failed to resonate outside the disability rights community.  Thus my reaction to the ad above was anger. This ad demeans and belittles people with a spinal cord injury. At a symbolic level I wonder how much have we truly advanced since the days of the Jerry Lewis Telethon. The essential message is the same--pity those poor crippled bastards.

People with a disability have different needs that society has chosen not to value. That is the world is constructed for bipedal people and access for those who are differently mobile is an after thought. Access to mass transportation and accessible housing is problematic at best two decades after the ADA was passed into law. People with a disability are unemployed in stunningly high numbers. Access to affordable health care is impossible for far too many people with a disability. Equality, real equality, is decades away in my estimation. So yes, I get made when I see ads such as the one above. The image and successful effort to raise money is grossly misleading. In fact, a charity based approach to raise money is inherently demeaning. My struggle against social injustice is at odds with a charity based model of disability that relies on raw emotion. I am not optimistic about the future. I am asking a lot of people--people that have no idea what disability rights are that is. I am asking these people to use the most powerful and neglected part of their body--their brain. People need to learn to reject most if not all of what they learned about disability. When I see ads such as the one I have railed against deemed demeaning I know real social progress has taken place. I look forward to this day. I hope to live long enough to see it.

Out and About: Skiing in Vermont

I have not posted much lately. I am too busy having fun with family and friends. I spent some time in Vermont and skied at Pico Mountain. For those interested Vermont Adaptive Ski and Sports is a great adaptive sport organization. My good friend John told me I broke a lot of bad habits this week. For me the challenge of skiing is largely mental. The best part of skiing though is the lift and views from the top of the mountain. Had two great days of skiing. One day was bitter cold--well below zero. The second day it snowed off and on and was much warmer. I am sure when my son Tom returns to school at Hofstra University I will be posting on a regular basis again.

MERRY CHRISTMAS

For all those that celebrate Christmas I wish you well. Good cheer to all. If you have the time I highly recommend you cut and paste the link below. Wheelie Catholic has written an interesting Christmas post.

http://wheeliecatholic.blogspot.com/

Death By Bedsores

Late last month I read an article by Art Caplan on Medscape: "Patients Have the Right to Choose Death From Bedsores". Caplan's article has been discussed in some detail within bioethics. Caplan's article is about an elderly man in his 80s who lived in a  rural area, had one daughter, and lived an independent life until he had a series of strokes. At some point during his hospitalization this man was told he could not return to his home and formerly independent life. He was going to be admitted to a long term care facility. Not surprisingly the man in question balked at this idea. Controversy erupted when he refused to be turned. He knew that if he were not turned severe wounds would develop, grow in size, and eventially become infected. Death was inevitable. According to Caplan the man died in the hospital, with huge ulcers. Basically, his body fell apart, the nursing staff was in an uproar, doctors fighting about whether or not it was right to let this happen. It was quite divisive for the staff morale, and indeed they were investigated about how a person in their hospital could die from infected skin ulcers.

Caplan concluded the elderly man had the right to refuse to be touched and moved even if it would result in death. Caplan thought the refusal to be turned was akin to a patient that refuses a feeding tube or dialysis. This is an interesting point no doubt. However, Caplan really goes off the rails at the end of his essay when he wrote that this man's decision started to affect nursing and staff morale and began to become a problem in the delivery of care for others, then I believe that is a factor that has to be considered when deciding whether to honor what he says. The nurses cannot work if the unit becomes a smelly, untenable mess, and although this man had his rights, other people have their rights too. If I thought the care of others was being compromised by these morale issues and staff problems, I might override a patient's wishes. I might not honor his request in the name of other people's rights. In my opinion, there may be limits to what you can request when it affects the care that others can receive. That is a tradeoff that has to be weighed at all times. As tough as this case was, it provides lessons to take home. Autonomy and patient rights may have some limits when they begin to affect others and the care that others can get. It may be important to think about this kind of dilemma in advance, and be ready to say as soon as a request comes that this is the patient's right, but it is not something we can accept at this facility.

Caplan's conclusion left me shaking my head in disbelief.  Caplan should know better than to pen such a sloppy anaysis. In my estimation Caplan's scholrship is undermined by his penchant for shooting from the hip and pumping out opinions that clearly need to be considered much more carefully. When I read Caplan's conclusion I immediately thought of Susan Schweik's book the Ugly Laws that masterfully details how people with a disability were prevented from begging because their mere presence in public was objectionable. Historically, people with disabling conditions were overrepresented in the ranks of beggars. This undoubtedly distressed those without a disability in the past and present. One word comes to mind when I think about the end of Caplan's essay: outmoded. I find it distressing Caplan is willing to overide a patient's wishes if this person affected the moral of the staff or care of others. This is no mere "tradeoff|" as Caplan asserts. I can readily imagine the implications for disenfranchised populations, people with a disability included. These thoughts bring forth words we now deem antiquated like feebleminded, lame, epileptic, retarded, idiot, insane and many others. And what about the present? Will the presence of a person with Alzheimer's disease affect the moral of the staff? Will such a person who yells out cause distress to other patients? Will this person be chemically restrained to improve moral? And what about a person such as myself who is paralyzed? Could my presence alone cause staff members to be depressed? Could other patients fear my condition is  contagious? Yes, I am using a slipperly slope argument here--something I do not ordinarily utilize.

Caplan's article was likely written to prompt debate. Afterall, he is a larger than life character in bioethics and recently took up a position in the Division of Medical Ethics at the NYU Langone Medical Center in New York. When I heard about this I thought one thing: Caplan wants to live in the media capital of the country. This is not such a bad thing--bioethics as afield is devoted to critically important issues in healthcare. Caplan has positioned himself to be the go to guy when any ethically questionable issue arises. I simply wish he would think before he speaks.