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.

Holiday Cheer? Bahumbug

The Holiday season puts me on edge. Many people act out of character during the season of good cheer. I try to limit my social interactions and avoid any mall like the plague. One thing I cannot avoid is the Salvation Army. The fact is I hate the Salvation Army and the people that ring bells outside grocery stores all December.  Every time I hear those bells I get annoyed and it instantly puts me in a bad mood.  The bells remind this is a bad time of year to be a person with a disability. Charities are out in force and by extension people seem to have an inner urge to help the handicapped. Where I wonder are all these do gooders in the spring, summer and fall? Where are these do gooders when the school budget is cut and the first line items eliminated are for so called special education? Where were the do gooders in the Senate when the UN treaty on disability rights I wrote about was not ratified?  Where were these do gooders when Mayor Bloomberg selected the taxi of tomorrow that is not accessible? Where were these do gooders when I encounter yet another broken elevator or bus lift?

Spare me pity and a charity model of disability.  Charity at the macro level is a form of social repression. The charity model awards power to the giver and suppresses the recipient. If we think of people with a disability as needy this undermines the civil rights model of disability. This is exactly what I was thinking when I was grocery shopping. Yesterday I stopped by the supermarket and as I was roaming the aisles I heard an announcement over the public address system: “A car with plate number XYZ is blocking the handicapped ramp. The car must be moved immediately. The police have been called”.  I would suggest that sort of announcement will only occur in December on the days leading up to Christmas. Ramps are blocked on a regular basis at the supermarket and elsewhere.  Shopping carts often occupy handicapped parking.  This issue is never addressed much less resolved. The sort of sudden interest based on a feeling of doing good for the handicapped is a one shot deal and categorically fails to address the fundamental problem that is ignored by the majority of Americans: disability rights are civil rights.  This depressing assessment reminds me of the slogan piss on pity.  Perhaps I should dig out my t-shirt  with these words and wear it as a shield from do gooders. 

Paralysis Long Ago and Paralysis Today

I came across a music video, No More Wheelchairs, that falls into the category of inspiration porn a few days ago. The video starts with a black screen. White words scrawl across the screen:

Someday there will be

NO MORE WHEELCHAIRS

Until then…

LET’S MAKE THE BEST OF IT.

The first image after these words show a young well built muscular man without a t-shirt sitting in a mountain bike wheelchair pushing up a steep hill. This is followed by many other images of paralyzed people. For instance, a person using a wheelchair dancing on stage and at a ice rink, surfing, mono skiing, wake boarding, para-sailing, doing sit ups in a wheelchair, a person walking in the exoskeleton, Christopher Reeve, scuba diving, a man pushing a wheelchair on the beach with what I assume are his son and daughter running next to him.  If I watched this video without words and the identical musical score I would have thought cool. My next thought would have been that it is amazing how easily adapted most sports are for a paralyzed people.  But I did listen to the lyrics and they are dreadful.

No More Wheelchairs
by Daryl Holmlund

When I am deep asleep
sometimes I dream of doing things
that I can’t normally do:
Running, climbing,
jumping, flying –
and sometimes I’m dancing with you.
But no dream ever compares
to when I dream that there are no more wheelchairs!

Now to really understand
you’d have to see my dreamland
the place where everyone feels free.
Missing limbs are regrown,
spinal cord patches are sown,
and everyone walks on their own feet.
New legs for Lieutenant Dan
and Chris Reeves is still Superman!

When I have that dream
I try hard to stay asleep,
and when I wake I don’t know how to feel
Each night when I turn out the light
I hope that this would be the time,
and I pray the dream would be real.

I pray that the dream would be real.

Everyone could choose to use the stairs
in a world where there is no need for wheelchairs!

The song was written by Daryl Holmlund who experienced a spinal cord injury in 2004.  Music videos such as the one posted by Holmlund are common. Let me be very clear: I have no doubt Holmlund meant well and is a good person. I find it encouraging that he got an adequate amount of rehabilitation after his injury.  I am even happier that he finished college and is employed as a teacher. It is great that he has gotten into handcycling and I assume other adaptive sports (I gleaned all this from his blog).  He has a very good voice and I wish him well in his career as a teacher and song-writer. What I do not feel is any connection with his experience as a paralyzed man.  This sense of a profound disconnect between myself 34 years post SCI and the new generation of paralyzed men and women troubles me.  I am appalled at the current state of rehabilitation post SCI. The lyrics to No More Wheelchairs illustrates a decidedly mixed message is sent to people with a SCI.  For most with a SCI, rehabilitation is cursory; it is far too short a period of time to learn how to care for a paralyzed body.  By care I mean learning how to control one’s bowels and bladder, realize the importance of skin care, adapt to using a wheelchair, and learn how to cope with the dramatic social changes associated with SCI. None of this is easy.  In fact adapting to a SCI is exceptionally hard physically and mentally.  I am appalled at contemporary rehabilitation. The cure industry has dug its hooks into rehabilitation and introduced many high profit and impractical items such as the exoskeleton.  Given how cursory rehabilitation is after a SCI, it makes no sense to spend time learning how to walk in an exoskeleton. Symbolically the use of the exoskeleton sends a bad message to your average person who mere weeks ago had never thought about paralysis, knows nothing about life post SCI, and has no clue about disability in general.  

Rehabilitation in my estimation needs to be practical and deeply grounded in reality. What a paralyzed person needs the most is knowledge and time. A paralyzed person does not need inspirational songs and images.  A paralyzed person does not need to see others glorify walking with a device such as the exoskeleton.  There is no need for beautiful rehabilitation centers that create a bubble of acceptance. What a paralyzed person needs to think about is not a time when there are no more wheelchairs but instead a depth of knowledge about the wheelchair industry. They need to learn how to check their skin daily and determine what wheelchair cushion they should be sitting on.  They need to learn how to manage one’s bowels and bladder. They need to learn transfers of all kinds. They need to learn how to repair a wheelchair. A veritable revolution must take place physically and mentally. The fact is using a wheelchair is deeply stigmatizing.  We paralyzed people are part of a minority group that is routinely discriminated against. Barriers remain the norm. Physical access to housing and mass transportation abound. Unemployment rates are shockingly high and have not changed measurably in decades.  A paralyzed person needs to learn how to reject the stereotypes associated with disability and assert their civil rights.

The divide between a person such as myself and others who have lived with a SCI for decades and newly paralyzed men and women is cultural. That is the way we as a culture react to paralysis has changed substantially. When I went through rehabilitation long ago I was taught to be fiercely independent and self-reliant. I was taught to be assertive and pro active in caring for my body.  I never heard anyone talk about cures for paralysis. This was not subject of discussion. The unspoken message was hard to miss—this is your life and get on with it.  I also learned about the grim social realities associated with disability at college. I was surrounded by other young men and women who knew far more about disability than I did. I learned about exclusion and the fight for education. One of my first roommates went to a special segregated school for the handicapped, a fact that stunned me. I learned about baseless prejudice from first hand experience. The greatest period of learning in my lifetime took place in those first few years after paralysis.  I learned and accepted I was different—different in that my civil rights would be routinely violated and I had better fight back.  The risk as I perceived it was great—social oblivion and wasted life were a distinct possibility. The bias I encountered drove me. I wanted to be the best student in class and crush my peers academically. I wanted to get laid on a regular basis to prove I was indeed a sexual being. I was determined that I would marry and be a parent. I was going to get a PhD and do so at Columbia University. I was determined to have a life.

None of what I learned as a young paralyzed man is reflected in what I read about people with a recent SCI. I have read much about the exoskeleton and stem cell treatment in China and other countries. I have heard Christopher Reeve lauded on a regular basis. I have heard some people state they will “hold on” or wait a seemingly arbitrary number of years until scientists discover a cure for SCI.  This enables some to put life on hold; unemployment, the lack of relationships, and failure to seek or receive an education can all be tolerated when one lives a virtual life in purgatory waiting for a cure. Some will commit suicide years post injury because a cure is not forthcoming. I have visited truly beautiful rehabilitation centers that contain high tech gadgets but do little else to help a person adapt to a SCI in the real world.  I have read about rehabilitation centers that change their name to include the word rejuvenation.  I guess this marketing strategy works.

Lost today is a very simple fact: disability is not about overcoming a physical deficit. Disability is not an individual problem or singularly unusual. Disability is not about paralysis, blindness, deafness, or any other bodily deficit. Disability is a social malady. When I read this in Robert Murphy’s The Body Silent in 1980 it was as though I was struck by lightening. There was nothing wrong with me! I do not wish as Holmlund does for a day without wheelchairs. I think wheelchairs are an instrument of power.  My wheelchair makes my life go.  It is a powerful force. This belief gets me to the heart of the cultural divide between myself and people with a recent SCI.  Disability is not about what one cannot do it is about society’s refusal to negotiate difference.  Our country is constructed for people who are bipedal and typical. Those individuals, verticals as Mike Ervin humorously referred to them on his blog Smart Ass Cripple, knowingly choose to be exclusionary. We as a people choose to exclude those who are different. Culturally we not value people with a disability—they are too different from the norm. We accept bias exists and choose to do nothing. We ignore 40 years of legislation designed to empower people with a disability. And now we are not equipping people who experienced a SCI to assert their rights as citizens.

Let me end with a suggestion: Rehabilitation centers like to have visitors who can inspire patients. Paralympians are a perfect example. This is in part great. Such a visit can open a new world of adaptive sports to people with a recent SCI. But I would suggest a far more important group of visitors should be asked to speak as well. People from disability rights groups such as ADAPT, independent living centers, disability studies scholars and other activists should speak. This would undoubtedly open up a whole new world and prepare people for the real world where bias is alive and well.  

Shocked: Just Shocked

This video shocked me. "Get Outta Town Retards". This hateful graffiti was spray painted on a home in a small town in Central Illinois. The home and cars were spray painted with other hateful words. This took place in the spring of 2011, a day that changed the parents life. The family was attacked because they have two daughters with Down Syndrome. The response is from the daughter's brothers. I have no idea how much work went into making the above video. I do know that 129,753 on Facebook people "like" this and 55,043 have shared the video. These numbers are a shock. I want to know why did this story not go viral instantly. I want to know why this did not become a national news story debated from coast to coast. This video kept me up last night. How could people be so cruel. How could a human being knowingly spray paint this on a home. I wonder do my neighbors think the same thing when it comes to the group homes that are nearby. Worse yet, do residents of any town in America hate students with Down Syndrome?

Sadly I know the reason why this video did not go viral. Disability rights and civil rights are never thought to be one in the same. The ADA is not and has never been perceived to be civil rights legislation despite the fact that is exactly what it is. Disability rights ring hollow for the vast majority of Americans. If disability rights is discussed it is perceived narrowly--as in the decision to have a bus with a wheelchair lift. Secondary schools simply do not in any way discuss disability rights as part of its curriculum on the civil rights movement. We get a day off for Martin Luther King Day every January. Every child knows exactly who King was and what he did. Every American is exposed to King's I have a dream speech. I am sure no student in elementary school knows who Ed Roberts was. I am sure 99% of the teachers in elementary schools have no idea who Ed Roberts was. I am sure no students, teachers or administrators know the history of accessible transportation, specifically the fight to get wheelchair lifts on public school buses. This lack of knowledge is called ignorance. Ignorance breeds misunderstandings, hate, fear and exclusion. Ignorance made the above video possible. Today is a grim day in my mind.

Santorum, the UN and CRPD: Stick to the Facts

I am a bit late to the party. In the last few days I have carefully followed the reaction to the Senate’s vote not to ratify the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Two themes have emerged in the mainstream press. First, Santorum played a key role in the defeat of the CRPD as did other extreme right wing Christian conservatives. The ability of a small number of Senators to defeat a benign treaty such as the CRPD is indicative of a hopelessly dysfunctional government. Second, the United States is the world leader in disability rights. The CRPD used out ADA as model legislation designed to extend the same protections Americans with disabilities enjoy to the rest of the world.  

I am delighted to see disability become a hotly debated news story. However, I am not impressed by the two themes that have emerged as news.  Indeed, I get angry each time a commentator lauds the ADA and asserts people with a disability in America should consider themselves lucky. I can assure you I do not feel lucky when I leave my home and encounter bias on a daily basis. I do not feel lucky when I walk in downtown Katonah where I live and cannot enter 90% stores because they are inaccessible. I do not feel lucky when I cannot get a cab driver to stop for me in New York City. I do not feel lucky when I come across elevators filled with trash. I do not feel lucky when I try to access subway systems that remain grossly inaccessible. I do not feel lucky when I try and get on a bus and the driver has no clue how to use the wheelchair lift. The point I am trying to stress is that our country and court system has done its level best to gut the ADA. In my experience towns nationwide do their best to avoid complying with the ADA.  School districts are the worst offenders in this regard in large part because so called special education is perceived to be an unwanted economic burden.

The idea that the United States is the world leader in disability rights is fiction. There is a divide between what is said about the ADA and the experience of being a person with a disability navigating our social and physical cultural environment. This divide has come up many times when I discuss disability rights with my son. Recently he has used a term I find fascinating.  In one of his political science classes his professor has maintained we are living in what he calls “a post factual world.” As I understand it some of his professors believe facts are not as important as the way words, opinions really, can be spun. Words and opinions do not need to have a basis in fact in a world dominated by social media. The news is delivered so swiftly that the way news is delivered is more important than substance or facts.  I was thinking of this when I read what Santorum had to say about the CRPD. Santorum stated:

Who should make the critical health-care decisions for a child with a disability? A well-meaning, but faceless and distant United Nations bureaucrat, or a parent who has known, loved, and cared for the child since before birth? The answer should be obvious, and today the Senate made the right decision by rejecting the United Nation’s Convention on the Rights of Persons with Disabilities (CRPD).

The reason I have so strongly opposed CRPD is also simple. Karen and I have experienced first-hand as we care for our little blessing, Bella, that parents and caregivers care most deeply and are best equipped to care for the disabled. Not international bureaucrats.

Santorum’s words were reiterated even more strongly in the far right press.  Patriot Voices railed against the CRPD.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) would give the U.N. oversight of the healthcare and education choices parents with special needs kids make.  It is outrageous that the government could tell you and me what is best for our children, particularly when they’ve never met the child. If this were to pass, CRPD would become the law of the land under the U.S. Constitution's Supremacy Clause, and would trump state laws, and could be used as precedent by state and federal judges. This treaty would give the government, acting under U.N. instructions, the ability to determine for all children with disabilities what is best for them. It also would give the U.N. discretion over decisions about how we educate our special needs kids, and could potentially eliminate parental rights for the education of children with disabilities.

Santorum  and Patriot Voices words have no basis in fact. None. There is no chance the CRPD would give international bureaucrats control over children with disabilities. The CRPD does not in any way shape or form alter or amend American laws and certainly not the ADA.

Santorum went on to state:

The best interest of the child” standard may sound like it protects children, but what it does is put the government, acting under U.N. authority, in the position to determine for all children with disabilities what is best for them. That is counter to the current state of the law in this country which puts parents – not the government – in that position of determining what is in their child’s best interest. Under the laws of our country, parents lose that right only if the state, through the judicial process, determines that the parents are unfit to make that decision.In the case of our 4-year-old daughter, Bella, who has Trisomy 18, a condition that the medical literature says is “incompatible with life,” would her “best interest” be that she be allowed to die? Some would undoubtedly say so.

The above is ludicrous. Worse, it is perilously close to conspiracy theory lunacy. Let me get this straight. If the CRPD is enacted our government will use UN authority to determine what is in the best interest of a child with a disability. So according to Santorum his daughter would be allowed to die because his daughter has Trisomy 18.  I am not exactly sure how an international bureaucrat will accomplish this but I do know one thing—it is not possible. If Santorum’s words and opinions are not bad enough he has used his beloved daughter Bella as a political prop. Yes, when Santorum needs to establish himself as the champion of disability rights he is sure to include Bella in every possible photo op.

In closing, let me turn to the inconvenient facts. Why is Santorum and the far right so worked up? They strenuously object to the CRPD because of article 7 and the following sentence: “Children with Disabilities: In all actions concerning children with disabilities, the best interest of the child shall be a primary consideration”. This statement is not designed to address the status of children with a disability in this country.  The fact is 80% of all people with disabilities live in developing countries. Most of these countries have a profound shortage of doctors.  Health care standards are grossly inadequate. Most people with a disability live in abject poverty and the majority of children with a disability never celebrate their 21^st birthday. This is a human rights issue few are willing to discuss. To conflate this grim reality abroad with groundless concerns about international bureaucrats taking control of disabled children’s live is factually bankrupt.

If anything good can be found in Santorum’s opposition to the CRPD it is that some might be inspired to actually read the CRPD and by extension think about the ADA and disability rights. As I read it the CRPD embodies the principles set forth under the ADA. By principals I understand the CRPD to be about the civil rights of people with a disability.  Now this is the perspective I would like to hear discussed by the mainstream media.