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.  

An Interesting Ten Days

The last two weeks have been interesting to say the least. Hurricane Sandy devastated much of the New York City area, especially coastal areas. The images and lives lost is nothing short of a shock. I faired very well. Truth be told, I abandoned ship and headed east and north. I stayed with a close friend for a week. I returned home to no power and luckily no damage to my home. I did lose many trees and consider myself extremely lucky. In my area Sandy was much worse than last year's freak Halloween snowstorm. We lost power for about the same length of time but the number of trees that came down last week was nothing short of amazing. I can only imagine what the storm sounded like when huge trees were ripped from their roots and came down with great force.

With my power restored I was able to watch the election. I was fascinated and nervous. I was deeply concerned Romney might win. I will confess when I saw the early results with Romney ahead I was freaking out. By midnight it was clear Obama had won and I went to bed a happy man. I was happy not just because Obama won but rather that the extremists that dominate Republican and conservative politics lost. We need conservatives in this nation; I do not question this fact. But conservatives today are frightening people. As I see it, conservatives want to undermine the separation of Church and State. They want to ban abortion and set back women's rights sixty years. They are anti-science, anti-education, anti-health care reform, anti-gay�Many do not believe global warming exists. Conservatives, as I perceive them, are punitive. The sort of rugged individualism they try to sell is grossly misleading and caters to the lowest common denominator. As I wrote in my last post, none of us are ever truly independent. There are times when a person will need social supports. There is a reason we have a social safety net designed to protect people when they are vulnerable. Conservatives want to destroy that social safety net. Conservatives decry "big government". And in part they have a point--our Federal government is indeed a giant bureaucracy and far from efficient. Despite its flaws, and there are many, we need a Federal government. We need FEMA for instance. Consider what Sandy did last week. NYSEG, my local power utility, has had three extended outages in the last 18 months. Do not tell me NYSEG, owned by global energy corporation Iberdola, and serves 2.4 million customers in New York could not do a better job at restoring power. Corporations are designed to do one thing well, make money. Corporations may be made up of hard working and good people but corporations exist to make a profit. Given this indisputable fact, we need the Federal government to establish regulations that will force a company like NYSEG to have the ability to restore power in a timely manner. We need a Federal Government to force corporations to look past profit margins.  We also need a Federal Government to protect our civil rights. Hence I was struck by the closing of Obama's speech when he said:

I believe we can build on the progress we�ve made and continue to fight for new jobs and new opportunity and new security for the middle class. I believe we can keep the promise of our founders, the idea that if you�re willing to work hard, it doesn�t matter who you are or where you come from or what you look like or where you love. It doesn�t matter whether you�re black or white or Hispanic or Asian or Native American or young or old or rich or poor, able, disabled, gay or straight, you can make it here in America if you�re willing to try. I believe we can seize this future together because we are not as divided as our politics suggests.

I take exception to just one line above. We are in fact divided as a nation. The extreme disparity in the distribution of wealth nation wide is disturbing. Fewer and fewer realize their dreams no matter how hard they work. The great divide between rich and poor plays out in a myriad of ways. For example, years ago I saw an eye doctor I liked very much. Nan Hayworth was a good doctor and treated me with the utmost respect when I had my yearly examination. I suspected we got along because we had children similar ages and lived near one another. Hayworth retired at some point and life moved on. Fast forward to 2010 and I saw her name the local newspaper described as a �moderate Republican�. Hayworth was one of 41 conservative Republicans swept into Congress (she was embraced by the Tea Party). I read about her views and was appalled. How I wondered could she have treated me with such respect in her office yet hold views I found repugnant. Hayworth was no �moderate� Republican. She is a radical conservative in bed with Tea Party extremists. In Congress she tried to cut Amtrak funding by 50% She wanted to end Federal regulation of big business and supported fracking. She was staunchly opposed to health care reform. While I could go on suffice it to say Hayworth�s views are appalling to me. I suppose this is what happens when one loses touch with what ordinary lives are like. This can happen when one has amassed individual wealth in the range of $10 to $20 million dollars. More to the point however electing a class of people to Congress, the wealthy upper class, has consequences. Dissecting Hayworth�s positions is beyond the scope of this post. What is of interest to me is the ideology behind her views.  Simply put, we do not exist on the same economic plane. Hayworth�s daily life is grossly distant from mine. The same can be said for most people elected to Congress and the Senate. These elected officials are a class apart. They do not represent their constituents. Until this changes I see no reason why the divide between rich and poor will narrow.

Rather than end on a gloomy note, I find it delightful that the election was profoundly influenced by black, Hispanic, and women voters. Polling data reveals Obama got 75% of the Latino vote, 73% of the Asian American vote, and 93% of the black vote, and 66% of the women vote. I hope conservative Republicans note this demographic shift. I will confess to feeling more than a little happy Nan Hayworth lost. Better yet she lost to an openly gay man, Sean Patrick Maloney, who she accused of being a carpetbagger. Hayworth lost because her ideology failed to resonate and I hope is the start of a national trend.

Assisted Suicide in Canada and a Question

In the last two weeks I have spent much of my time thinking about assisted suicide. In part this is the residual side affect of attending the American Society of Bioethics and Humanities conference (see my previous post). Another variable is the assisted suicide bill that will be voted on in Massachusetts. The confluence of these two events has made me retrospective; hence I have been thinking much about autonomy and independence. We Americans place great value on autonomy independence, myself included. Prior to 2010 I was fully autonomous and fiercely independent. I truly believe I was the master of my own destiny. I bought into this hook line and sinker. Autonomy was a given, it required no thought. When I was bed bound I mourned my loss of autonomy (I was truly miserable) but at no point did I think about what autonomous meant. In 2010 I would have said autonomy is obvious--autonomy is being fully in control of your life. That is maintaining the ability to work, care for routine daily needs, and have a functional home or place to live. I would likely have added disability highlights the interconnections between people and that no one is truly autonomous. Autonomy can also be achieved in many different ways and take on a myriad of forms.

When I was seriously ill I instantly realized autonomy was highly valued. I read the Patient Bill of Rights when hospitalized. I heard all about patient centered care though I never saw it in action. I was told strict confidentiality laws existed and protected me. I was shown what an advanced directive looks like and was encouraged to discuss this with loved ones. Not once did I hear the word autonomy. Looking back I cannot help but wonder why no one addressed autonomy. I know it was at the forefront of my mind. I have come to the conclusion that the typical person when accessing health care is willing to begrudgingly accept a short term loss of autonomy. However, for a person with a disability the loss of any autonomy is significant concern--if not fear. I suspect that fear is directly related to the belief that an identity tied to disability is assumed to be less. Less in this instance is dependence. If one is not independent one loses a degree of autonomy and respect. In a health care setting this lack of respect can be deadly. When respect is absent it is all too easy to make categorical decisions for others--these others need not even be present. These thoughts have been coursing through my brain this week as I read the most recent appeal in the Carter case in Canada. Here I refer to the court of appeal October 22, 2012 between Carter and the Attorney General of Canada, file number CA040079. In section seven of this document I came across a startling acronym: LAWYER. Apparently in the Netherlands compliance with assisted suicide legislation is improving but not yet at an ideal ten years after becoming law. This is hardly a surprise but what stunned me was that studies have revealed many cases of  LAWYER exist: Life-ending acts without explicit request. You have to love the irony in the acronym LAWYER.

I am very curious if others have heard of the acronym LAWYER. I am especially interested in any comments from a person living in the Netherlands. Such acronyms reveal that language matters. The well funded Compassion and Choices is particularly good at marketing or more accurately lobbying for assisted suicide. Death with dignity sounds much better than assisted suicide. PAD is even better yet--physician aided death. PAD conjures up the image of a middle aged doctor, trim and fit, a hint of gray in his hair, and long time family physician caring for Grandma who is terminally ill. Out of the goodness of this man's heart he will ease Grandma's suffering. Her death with be peaceful and painless. She will be surrounded by loved ones. This is a great image devoid of reality. The reality is we do not get to choose how we die. We do not talk about death much to our own detriment. We do not like to talk about elder abuse. We do not want to talk about severely compromised new born infants who die because their condition was deemed incompatible with life. We do not want to talk about the financial implications of caring for a person at the end of their life--especially when choices come down to spending every last penny to support Grandma with funds that were supposed to go to help pay a grandchild's college tuition. We do not like to talk about the great health care costs associated with disability.  We do not want to talk about people who are clinically depressed. We do want talk about people with a host of metal illness that may impair their judgment about the value of their life. Dozens of other examples or more exist.

I recently came across a fascinating essay by Carolyn Ells whose work I was not familiar with. In "Lessons About Autonomy from the Experience of Disability" in Social Theory and Practice she wrote about "situated independence". Ells wrote "one is independent only within the confines of one's situation... Access to social spaces and services and empowering relationships  makes autonomy possible. In other words, situated independence is necessary to achieve the control necessary for governance".  I am drawn to the concept of self governance and more broadly how we situate and define autonomy. Many of us are obviously and traditionally autonomous. But what of others who are not traditionally autonomous agents? Can a ventilator dependent quadriplegic be autonomous? What about a person with a serious cognitive and physical deficit? What about a person with Down Syndrome? We need to entirely rethink what autonomy means and how we can respect forms of autonomy that are not typical.