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. 

Madison Square Garden Disability Policy

I went to see Cornell University play against the University of Michigan at eh famed MAdison Square Garden. This game was advertised as the Frozen Apple. Both universities have excellent hockey programs and multiple NHL first round draft choices were on the ice. As some may know the NHL has locked out its players and the season is most likely going to be lost. I went to MSG for two reasons: first, I miss watching hockey and the opportunity to see NCAA is unique. Second, I was eager to check out the newly renovated garden. I was impressed by the renovations. The garden is no longer an antiquated facility. One result of these impressive renovations is expensive food--expensive even by stadium standards. I drank a $9 Budweiser and ate a hot dog for $6.50. My son had a $5 coke. Yes one beer, one coke and two hot dogs cost $27. We got off cheap. You cannot imagine how much a lobster roll, sushi or sandwich from Carnegie Deli costs.  

While we had great fun, I was deeply disturbed by the way handicapped seating is managed. The area we sat in was outstanding, section 108. This area is accessed by a small elevator clearly marked for disabled patrons only. We exited the elevator and a ramp immediately to the right goes down to handicapped seating. Wow, what a great view. I will happily deal with the inconvenience of having to use an elevator to get beer or food and use the rest room for the kind of view of the ice I had. I thought to myself, after decades of bad service and lousy seating the garden finally got it. There is real handicapped seating! Not so fast. The usher asks to see my ticket and shows me where to sit with my son and explains you must sit all the way back and against the wall. I am deeply puzzled. Here we are in a great secured area that is about 6 feet deep and at least twice as long if not more. Directly in front of me is a glass half wall. Yet the usher has told me I cannot under any circumstances sit by the glass. I must sit as far back as possible. This is nothing short of bizarre. If I sat all the way back against the wall at least four to five feet of empty space exists. I told the usher this makes no sense. She replied "this is the policy", a phrase I would hear over and over again. The usher was polite but unyielding--you must sit all the way back against the wall not in front next to the glass. She told me if I sat forward next to the glass I would block the view from the luxury boxes behind handicapped seating. Luxury boxes that were empty and incomplete. I was annoyed and went to speak to a supervisor. The supervisor said yes the usher is correct, sitting all the way back away from the glass is the "policy". She suggested I see customer relations. I see the supervisors supervisor and after waiting he appears. I explain the situation, he leaves and comes back ten minutes later. Sorry I am told that is the "policy". No one can explain the "policy" or the reasoning behind it. The second supervisor is clearly bored and does not care. I told this man every person in handicapped seating has complained though I am the only person in the section using a wheelchair. Again I get a sorry but this is the "policy".  Talking to a wall would be more productive.

I have been to professional hockey games in Washington, Boston, New Jersey, Toronto, and many other cities. In newly constructed or renovated buildings patrons sit directly in front of the glass half wall in handicapped seating sections. This is common sense. Sitting back against the wall several feet from the glass half wall at the garden is strange in the extreme. Never have I heard of this "policy". Each person in handicapped seating expressed the same sentiment--the policy makes no sense. As I watched the game I thought of an analogy: a man builds a brand new addition to his house. The addition is spectacular. But when the work is done the man lives on the porch outside the addition. The point here is the handicap section I was in at the garden was outstanding. Great sight lines from the glass half wall could and should be enjoyed. Moreover there is lots of room to move around and we were not shoved together like sardines. The great sight lines are significantly impaired sitting four to five feet away from the glass half wall. In fact when one sits so far back when patrons in front of the handicap section stand you can see absolutely nothing. Even when those in front are sitting in their seats about 15 to 20% of the ice is not visible. Again, this is from four to five feet away from the glass half wall where on should logically sit.

I really am perplexed. The supervisors clearly did not care and refused to make any accommodation or offer a logical explanation for the "policy".  It appears to me a person with no knowledge of handicapped seating created an arbitrary "policy" that makes no sense. Supervisors and ushers are powerless to help or explain the "policy". Given the long history of inadequate handicap seating I was thrilled by the new handicap section. Yet the garden screwed this up royally. I am going to contact the garden this week and write a pointed email. I am hopeful the response will be positive--part of working the kinks out of a new building. If I am given the run around I will file a formal complaint with the DOJ.

Conference Controversy

It is my understanding that the below flyer was handed out at Justice Action Center conference yesterday. I read about this conference weeks ago. I thought about attending despite the fact the scholars speaking are virtually all associated with Compassion and Choices. I know three of the speakers and two on the panel "Special People Special Issues". I am also in the midst of writing a long review essay on bioethics and disability. Alicia Quellette's Bioethics and Disability is one of the texts I am reviewing. After some thought I decided not to attend. Unbalanced one day conferences are not unusual. But something struck me as inherently wrong about the conference. Simply reading about the conference made me wary. I suspect others shared my discomfort and chose not to attend. By far the strongest critic was Stephen Drake. He was severely critical of the conference. See: http://www.notdeadyet.org/2012/10/ny-law-school-justice-action-centers-upcoming-annual-justice-symposium-not-fair-to-disability-advocates-let-alone-just.html

I think Drake is too harsh but one cannot dismiss the validity of his concerns. The preponderance of scholars associated with Compassion and Choices should have been acknowledged. The utter lack of any person associated with the disability rights movement is puzzling at best. Ignoring the lack of disability representation, I was troubled for three reasons. First, if I attended I would have been the lone opposition voice and person with a disability. While I embrace the moniker Bad Cripple had I been present and dissented it would be all too easy to dismiss my views. I would be a stereotype of the angry, bitter and, yes, a bad cripple. I did not want to be the straw man. Second, I am stunned by the panel title: "Special People Special Issues". I am not one to engage in polemical battles over the use of words--such debates are largely fruitless in my estimation. However, to use the terms "Special People, Special Issues" is so far out of date it boggles the mind. I am equally stunned the presenters, Alicia Quellette and Ann Neumann, did not vigorously object. Perhaps they did, I do not know. But I can state without question I would not have made a presentation unless the conference organizers changed the session name. This is 2012 not 1952. The language used demonstrates an utter disregard for the last 20 years of political activism on the part of people with a disability. Third, the tension between those in bioethics and disability rights is widely known. I have bemoaned this divide for quite some time. I will readily acknowledge my early work in opposition to the Ashley X Case and severely critical comments about Christopher Reeve contributed to the divide.  Efforts at a reconciliation between bioethicists and disability rights activists have all been unsuccessful. This conference demonstrates why disability activists and disability studies scholars object to bioethics. There is no representation, none. Quellette's presence is not as an activist or disability studies scholar but as a bioethicist and lawyer. The agenda set is hopelessly skewed, the imbalance of power grossly unbalanced. From the start disability activists and disability studies scholars are on the defensive. For instance, Ann Neumann notes below my autonomy is threatened by hypothetical others. Bigotry and ignorance abound, it is not hypothetical. Disability based bias is very real and has lethal implications. Does this really need to demonstrated? A vast literature exists that details a long history of disability based bigotry.

Here is my naive hope. We need to get people from Compassion and Choices and Not Dead Yet, lock them in a room and not let them out until they learn to show mutual respect for each other. We need to do the same with bioethicists like Peter Singer and Jeff McMahan and disability studies scholars such as Anita Silvers and Eva Kittay. I have always felt one can learn more from others who you strenuously disagree with. Such an encounter can force one to hone their views and writing.  
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Not Dead Yet Flyer

NOTHING ABOUT US WITHOUT US!

WE ARE DISABILITY RIGHTS ACTIVISTS WHO OBJECT TO A SYMPOSIUM THAT CLAIMS TO ADDRESS DISABILITY RIGHTS CONCERNS BUT INCLUDES NO PRESENTERS FROM THE DISABILITY RIGHTS MOVEMENT.

Today, Friday, November 16th, the Justice Action Center, part of New York Law School, is presenting a symposium entitled ” Freedom of Choice at the End of Life – Patients’ Rights in a Shifting Legal and Political Landscape.” 

There are multiple and major problems with the third panel which the Symposium materials describe as follows:

“Panel III: Special People, Special Issues
This panel will discuss the issues of concern for people with disabilities and the conflict between organizations dedicated to protecting their rights and end-of-life advocates. The panel will discuss the views of some of the major religion (sic) and whether conservative theological values can co-exist with patient choice. Finally, the panel will conclude with a discussion of the quality of medical care provided to prisoners and how their end of life choices are treated.”

It is likely that “issues of concern” to disability rights activists will be discussed by panelist Alicia Ouellette.  Ouellette recently published a text on bioethics and disability – apparently becoming the newest bioethicist who wants to become known as the “disability-conscious” bioethicist – someone who relates slanted, distorted and outright “straw man” versions of disability critiques, concerns and strong objections to both bioethics and so-called “end of life” advocates.  Ouellette gets many things wrong about disability issues in her book.  

For more information, contact www.notdeadyet.org.

NOTHING ABOUT US WITHOUT US (CONT.)

It appears likely that panelist Ann Neumann will focus on religious issues, but her blog “Otherspoon” has demonstrated her longstanding marked disdain for disability advocates who organize against pro-euthanasia and assisted suicide groups.  In her July 2012 post on “Otherspoon,” she used a familiar move that privileged people make when they’re about to demean and dismiss members of a minority, writing about her great “friendship” with disability studies academic Bill Peace (Bad Cripple blogger), a conventional shield for what came next in her post:

I would never take him to task for how he feels.  Or over not seizing his autonomy from hypothetical others, including “pro-life” organizations that have worked very hard to recruit disabled individuals and groups to “their side”–with scary threats of a “culture of death” just waiting around to kill off the “abnormal.”

Instead of giving a fair account of the concerns of disability advocates about these issues, she inserts extreme slogans from the Religious Right – and then implies that we are jumping on their bandwagon because we’re just poor, scared little cripples who can easily be “recruited” by the right propaganda.  She denies the agency of disabled people, asserting that those stands we take that she disagrees with can’t be our own.

What makes this all the more appalling is that this Symposium will happen under the auspices of the University’s Justice Action Center.  Sadly, the Justice Action Center fails to show even a modicum of respect in making sure the perspectives of disability rights advocates and activists are represented fairly and accurately, and by disability rights activists ourselves, as other minority groups and women would have a right to expect.  

On November 12, we wrote to the following Symposium co-sponsors, urging them to withdraw their sponsorship:

New York Law School Law Review and the Diane Abbey Law Center for Children and Families, the American Bar Association Commission on Law and Aging; the National Academy of Elder Law Attorneys; the Elder Law Section of the New York State Bar Association; and Collaborative for Palliative Care, Westchester/NYS Southern Region.

For more information, contact www.notdeadyet.org.

A Reset Button for People with a Disability

A few days ago, November 12 to be precise, Stephen Kuusisto wrote a brief but fascinating post, Dusting Your Brains: A Disability Rant, on his blog Planet of the Blind. He wondered if there is a control, alt, delete reset for the human brain when confronted with inane social interactions. Kuusisto related a story about being at an airport and being told he had to use a wheelchair because "it is the rule". Ask any person with a disability and they can regale you with a host of entertaining stories. Airports are great fodder for ignorance and illogical so called rules. For instance, once in a while I am asked by airline personnel "can't you walk just a little bit". Ignorance and inappropriate social interaction is not limited to the airport. I have been accosted in just about every social setting one can imagine. Once I was screamed at for block after block in New York City by a homeless man who was convinced I was the "Anti-Christ". Health care professionals also have a penchant for saying remarkably inappropriate things. When my son was a little boy a physician told me "people like you should not have children". He said this in an emergency room while he was stitching up a cut on my son's finger. Gee, thanks for sharing.

Kuusisto wrote that people in disability land need to have a good relationship with their reset button. On this point, I could not agree more. When confronted and disrespected by the hordes of bipedal people that surround me daily I get angry. My anger burns a whole in my gut. I cannot let things go and replay in my mind over and over a negative interaction. I wonder could I have done something to avoid the person that demeaned me. But one sensation more than any other burns bright-- anger. Here I sit 34 years post paralysis and  22 years post ADA and yet ignorance abounds. Social and needless architectural barriers remain common place. Worse yet, my reset button is not working well. I have been avoiding social interaction. I have been going out at odd times when I know few people will be milling about. In part I am hesitant to go out because we are the verge of the holiday season. All that supposed good cheer is freely shared. I saw the Salvation Army guy last night ringing his bell. I hate those fucking bells and pushy Salvation Army bell ringers. What sticks in my craw though is the false good cheer and panic to buy stuff. Black Friday is gross, materialism at its worst. In terms of disability the holiday season is oppressive. A charity model of disability springs to the forefront of the minds of people that know nothing about disability. All of a sudden everyone wants to help me. Everyone smiles at me. Old ladies pat the top of my head and tell me I am a good boy. When I get gas people want to help me put my wheelchair back in the car.  The offers of assistance come fast and furious. None of them are sincere. Well, actually that is incorrect. Many years ago I was with my son a few days before Christmas. We were driving into New York City to see an all too rare afternoon NY Rangers hockey game at Madison Square Garden. On the drive into the city I got a flat tire. Amazingly I got the flat next to a highway gas station. I pulled into the small parking lot thankful I was not on the side of the road. I open the trunk, pull out the jack and the spare tire. I am about to work on loosening the lug nuts when a young man taps me on the shoulder and asks me if I need help. I am indecisive, unsure to say yes until the man's girlfriend says he is a mechanic. Cool. The young man helps me out and changed the tire in world record time. I reach into my wallet to give him some cash. He says no thanks. I tell him come on buy your girlfriend some flowers. I get a more emphatic no. My son suddenly chimes in "Dad you don't need to give him money. Santa is watching and he is going to be way impressed. They are going to make out like bandits on Christmas for helping us". When I am ready to give up on humanity I think of this story, take a deep breathe and hope my reset button will work better tomorrow.

Massachusetts Votes No on Question 2

In Massachusetts Question 2 was defeated. Question 2 was a death with dignity initiative modeled after the laws in Washington and Oregon. As little as a month ago it looked like the legislation would be passed into law. One poll maintained 68% of people were in favor and only 19% opposed.  Compassion and Choices, formerly the Hemlock Society, put their full weight and power in advocating for “death with dignity” in Massachusetts. The defeat of Question 2 was a great victory for two disability rights groups; Not Dead Yet and Second Thoughts. I tip my hate to Steve Drake and Diane Coleman of Not Dead Yet and John Kelly of Second Thoughts. Lest I mislead readers, a diverse coalition of groups led to the defeat of Question 2.  High praise though goes to one man—John Kelly—who I have not met. He worked tirelessly in the months leading up to the election. He came across as reasoned and articulate even when confronted with questionable views that had no basis in fact. I urge readers to listen to Kelly debate Marcia Angell on NPR All Things Considered. See link: http://radioboston.wbur.org/2012/09/18/question-two-death-dignity
http://www.necn.com/pages/video?PID=PPdLmLW_D_7kVBQhMh8nkZDs0ChuVVaj
Kelly was understandably thrilled with the election results. He stated:

This vote confirms that Massachusetts voters saw through the rhetoric and outright misinformation put out by those supporting assisted suicide.  Opposition to assisted suicide cuts across all partisan and ideological groups because the more people learn about the issue, the more they have second thoughts. Assisted suicide doesn't expand choice, it limits choice – and that puts at risk anyone living with a disability, mental illness or serious illness.

It is my sincere hope that not only will President Obama seize upon the election results but disability rights groups will do so as well. The opportunity is laid before us to marginalize the conservative right wing and hopefully eliminate  groups such as the Tea Party. This is an opportunity Obama must seize. We in disability rights must do our part as well. In Massachusetts for one of the first times in recent memory, if ever, the general public was exposed to a disability rights perspective. In part, this was because we were galvanized in our opposition to Question 2 and other death with dignity laws. The facts are on our side—scratch the surface, do some reading and it becomes clear—assisted suicide legislation is inherently dangerous and more to the point not necessary. Do not be swayed by sob stories the mainstream media hypes about people dying in agony. People die poorly because we do not discuss end of life issues.  If it were up to me Ira Byock’s The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life would be required reading for all Americans.

I do not dispute the fact many people die badly. However, Compassion and Choices sales pitch—we have the right to die is nothing more than a meaningless slogan. Proponents of assisted suicide want to control not death but its methodology. They state repeatedly that we should control how and when we die. This is deceptively simple. Of course we should have such control! Not so fast. Why do people want to die? People die because they do not want to lose their dignity. People want to remain independent. People fear losing control of bodily functions. People fear medical bankruptcy. All these fears have solutions and in most cases the problem is less physiological and more social. With proper social supports people can retain their autonomy and dignity. With proper medication, people need not suffer from pain. 

Do we really want to enter a world in which people such as Barbara Wagner are denied chemotherapy for late stage lung cancer in Oregon (it would have cost $4,000 a month and was not approved for her condition)? In its place the Oregon Health Care Plan office was willing to cover a lethal prescription. When it comes to the intersection of medical costs, personal experience, and concerns about vulnerability, it behooves us to listen to people with a disability. Proponents of assisted suicide dismiss our concerns and quickly point out there is no record of abuse in Oregon and Washington. Worse yet they think disability rights groups are pawns of the Catholic Church. Abuse is not reported because ending the life of an elderly, terminally ill or disabled person can and often is perceived as an act of compassion. It is rarely if ever considered a crime. This is a significant problem as the line between life and death is razor thin and easily manipulated. Social factors figure in prominently. I urge people to read a story recently published in Health Affairs by David Muller, “Physician-Assisted Death is Illegal in Most States, So My Patient Made Another Choice”. See link: http://content.healthaffairs.org/content/31/10/2343.full This article scared me and made me realize yet again how dangerous accessing health care can be for vulnerable populations. Muller’s article was deceptive and illustrated that the line between a “hastened death” and “assisted suicide” is subjective in the extreme. When I first read Muller’s article I was stunned. My first thought was the elderly man he cared for was murdered. Yes, I thought the article depicted a clear case of murder. Muller was directly responsible for a patient’s death. In another post I will deconstruct Muller’s article. There is only one point of agreement between myself and Muller. He wrote: an enormous gap exists between the thoughts many of us will have about aid in dying when we are hopelessly or terminally ill and our willingness to discuss those thoughts with a doctor. The reasons for that gap include the enormous social stigma surrounding death and dying, the fear of being labeled “suicidal” or “cowardly,” and the fear of alienating or disappointing one’s family members or physician. I do not question a gap exists between patients and physicians. I do not question the fact we fail to discuss end of life issues. I do however question why Muller chose not to mention fear. Vulnerable people rightly fear not only physicians but the health care system itself that is hostile to our existence. A hostility Muller is utterly unaware of I suspect. We people who are members of vulnerable populations are often an expensive drain on limited resources. We may have a limited life expectancy or our existence itself may be deemed “incompatible with life”.  But we have rights, civil rights than cannot and should not be violated.