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Thursday, December 11, 2008

Piss on Pity

The Academy of Motion Picture Art and Science board of governors has voted to honor Jerry Lewis with a special Oscar for his humanitarian work. Academy president, Sid Ganis, has stated "Jerry is a legendary comedian who has not only brought laughter to millions around the world but has also helped thousands upon thousands by raising funds and awareness for those suffering from muscular dystrophy".

When I read Ganis statement about Lewis this is what came to mind: Jerry Lewis' appearance on the CBS Morning Show in 1981 where he stated "If its pity, we'll get some money. I'm just giving you the facts. Pity? You don't want to be pitied because you're a cripple in a wheelchair, stay in your house". Such bigoted remarks are the norm for Jerry Lewis who is widely despised by those in the disability rights community. The most vocal opponents of Jerry Lewis and the MDA telethon are Jerry's Orphans. This group has engaged in a nasty war of words with the MDA and Jerry Lewis. The most articulate person who has opposed Jerry Lewis is the late Harriet McBryde Johnson. Her chapter, "Honk if You Hate Telethons", in the memoir Too Late to Die Young is thought provoking, funny, and undermines pity based fund raising. Another great resource are articles that appeared in the Ragged Edge. The verbal exchanges between Jerry Lewis, the MDA, and Jerry Orphans are heated, personal, and in many cases vicious.

The MDA and Jerry Lewis are of interest to me for a three reasons: First, Jerry Lewis has been the MDA national chairman since 1952 and the telethon has raised more than $2 billion dollars. This money has been collected on a pity based message that is as successful as it is antiquated. This fact by itself is deeply troubling. Second, the explicit pity based MDA campaign has a strange power that has caused a significant amount of harm. For some people such as McBryde, the MDA telethon convinced her that she had a "killer disease" and that her "life was ebbing away". McBryde was able to reconsider her childhood death sentence but perceptively wondered how many generations of children were actually killed. How many died because they thought their lives had no value? How many doctors did not treat children who could have lived? The third reason Jerry Lewis and the MDA telethon is important is because it highlights that disability rights are poorly understood if not entirely unknown. Does the Academy of Motion Picture Arts and Sciences know Jerry's Orphans exist? Have they ever heard of Johnson? Do they know just how out of step Jerry Lewis and the MDA is in the way they raise money? Sadly, the answer to these questions is likely no. If the Academy were aware the special humanitarian award would not be given to Jerry Lewis. To me this lack of awareness is the sign of a much larger problem: disability rights has in the past and presently utterly failed to resonate with the general public. I am not sure how much one self identified bad cripple can do but I feel slightly better now. You see I just got home from the post office where I sent the Academy president a copy of Johnson's chapter "Honk if You Hate Telethons" and articles from the Ragged Edge. This is a very small gesture not likely to sway anyone but in my dreams and hopes the post office is flooded with such letters.

Wednesday, December 10, 2008

Daniel James Parents: No Criminal Charges

Daniel James is back in the news. British newspapers report that the Crown Prosecution Service (CPS) will not press criminal charges against James' parents who escorted their son to Dignitas, a Swiss Suicide Clinic. According to Keir Starmer, Director of Public Relations at the CPS, prosecution of James' parents was not in the public interest. He stated "This is a tragic case, involving as it does, the death of a young man in difficult and unique circumstances. The CPS had ample evidence to charge James' parents under the Suicide Act which states that it is a criminal offense to aid, counsel or procure the suicide of another. The CPS did not minimize the "seriousness of this offense" but maintained Daniel James was not influenced by his parents to take his own life.

The CPS decision not to charge James' parents is extremely important. It provides precedent for the position of the CPS on cases of assisted suicide. It does not take much thought to realize that future cases will not result in prosecution. Thus the CPS decision paves the way for others such as Debbie Purdy to die without fear family members will be prosecuted for assisting her death. While proponents of assisted suicide slap themselves on the back and rejoice, I am deeply disturbed. Let me be very clear on what I think the CPS decision means: it is now acceptable to help people with disabilities end their life. Here I use disability in the widest sense of the term. In short, the hunting season for killing people with disabilities is now open. While my words are harsh, so too is the social reality people with disabilities encounter. Mr. James and his parents knew this and stated that their son was not willing to "live a second class existence". In fact they characterize the last months of their son's life as "unnecessary" and that it would have been "very nice for him to have been able to stay at home with his family."

I feel absolutely no pity for James' parents. I have not one ounce of sympathy or understanding for them. I am not swayed by a single statement they have made about assisted suicide or their son. They were and remain shockingly selfish, narcisstic in the extreme. They were so consumed by their son's paralysis that they never looked beyond what they felt was a family tragedy. The decision to assist their son's suicide has reinforced the commonly held belief that death is preferable to disability. News papers in Britain abound with stories about terminally ill and disabled people that want to or have been assisted in ending their lives. Here is a random sampling of statements I have read:

"Assisted death is a way to avoid becoming dependent on care givers".

"It was my duty to help him die".

"John's death was moving and amazing: it was a privilege".

"His deformed and dysfunctional body is now at peace".

"I wanted my healthy sister not the person who is fed by a tube and wears an adult diaper".

"My father borne his terrible illness long enough, it was time for him to die".

"No one can be happy after they are paralyzed, assisted suicide is the humane thing to do".

I could provide dozens if not hundreds of statement like those above. I find such sentiments deplorable. No wonder disabled people remain among the most oppressed minority group in the world. What worries me the most is where does this push for assisted suicide end? In Britain, Sky Real Lives will broadcast a documentary about Craig Ewert who has a motor neurone disease. The "highlight" of the show will be airing the moment of his death at the same Swiss clinic where Daniel James died. According to Stephen Armstrong, "showing the moment of death was worthwhile and even valuable piece of television" (Guardian "Memento ,mori" 12/10/08). This is downright creepy and I wish I knew how we as a society got here. Is this simply reality TV run amuck? I think not. We are living in an age of great social and economic upheaval and at a time the masses are in favor of assisted suicided. The mainstream media is reinforcing this widely held belief. Those at greatest risk are those least likely to be able to protect themselves--the chronically sick, elderly and disabled. These people's lives are not valued, my life is not valued. Worse yet, care for the sick, elderly, and disabled is expensive and resources wasted on their care. Society out of the goodness its heart does not want these poor bastards to suffer. Hence death is preferable and cheaper. This logic is as scary as it is deadly. The gauntlet has been thrown down and it is up to all humans to demonstrate our humanity by serving those that are risk for being killed.

Tuesday, December 9, 2008

Pity and Unemployment: The Hidden Agenda

As the American economy continues its precipitous decline people with disabilities are becoming increasingly marginalized. With the year ending in less than a month, I am convinced American society is taking a giant step backward in terms of disability rights. Why do I think this? In spite of 20 years of legislative initiative, the civil rights of disabled Americans have never been valued by society. This has been at the forefront of my mind as no news I read tangentially associated with disability is positive. Conservative and liberal news reports may differ in substance and style but all agree the economic crisis has hurt disabled people more than any other group. Major news outlets such as the Wall Street Journal and the U.S. News and World Report have published articles about the rising rate of unemployment among disabled people with titles such as "Recession's Bite Hits Americans with Disabilities Extra Hard". At the opposite side of the spectrum, MOUTH continues its first rate rabble rousing with a "Birthday Shout-Out to ADAPT".

Two news stories prompted me to write the above observations: first an article from the Detroit News about the show Extreme Makeover: Home Edition and the second about unemployment in the U.S. News and World Report. These respective stories reinforce why disabled people remain marginalized and unemployed in great numbers. In "Foreclosure Possible for Extreme Makeover Family" the Detroit News follows up on what is happening to the Vardon family. Some readers may recall the Vardon's are both deaf and have a blind autistic son. Their home was extensively renovated to meet their son's needs. The episode they appeared on in 2004 was memorable because it set a ratings record and heralded what became a common theme--the presence of disabled children and adults. Fast forward to December 2008 and the Vardon family home may be foreclosed on. If the Vardon's lose their home they will join 9,400 others in Oakland County who have experienced home foreclosure. The Vardon's have not been economically irresponsible. The mortgage has been sold three time in the last four years and their interest rate tops 11% Larry Vardon works for Chrysler, has been laid off, and his future, like that of all those who work for Chrysler, appears grim.

The U.S. World and News Report article referred to in the first paragraph highlights the disparity in employment rates between those with and those without a disability. In 2007 36.9% of working age people with a disability were employed. The overwhelming number of these disabled people had low paying jobs and nearly one in four lived below the poverty level. If previous recessions are any indication, the unemployment rate among those with a disability will increase leading one director of employment services to comment that "people with disabilities tend to be the last hired and first fired". Statistics reinforce this observation: between 1989 and 1992 working age men without a disability saw a 1.4% drop in employment while people with a disability experienced a 5.5% decrease. I could quote more statistics from the U.S. News and World Report article but I think my point has been made: disabled people are unemployed in massive numbers, a fact that has not changed measurably in more than decades.

In my estimation there is an explicit connection between the news stories: the presence of people with a disability in the work force is not common and pity, a central theme in Extreme Makeover, remains a destructive force in the lives of disabled people. Laws such as the ADA that have been put in place to protect the rights of disabled people in terms of employment have failed as has American society. Most work place environments can easily be modified to be inclusive to disabled people. These modifications have been termed "reasonable accommodations" and it is incumbent upon the employer to determine what is "reasonable". As interpreted by the Supreme Court "reasonable accommodation" has morphed into low cost as removing architectural barriers on a national scale is too expensive to enforce. Thus compliance with the ADA is perceived to be an act of generosity not compliance with civil rights legislation. Employing a disabled person on the part of the employer is akin to charity. The disabled employee is not like his peers--he or she has forced the employer to make special accommodations and as such has a negative impact on the bottom line. This line of logic empowers the employer to fire the least productive person. Yes, you guessed it, the first to go is the self absorbed disabled employee that cost the company money. I wish I had a way to undermine this line of thinking on a national scale. Among the many problems disabled people encounter, unemployment and access to higher education are among the primary reasons why we remain disenfranchised from society. The courts are of no help, the Supreme Court in particular, and this is why I remain committed to disability rights. I am less concerned with myself than I am with the scores of disabled people that do not comprehend the reasons why they are forced to struggle to find a job, home to live in, and bus or train to ride to work. In short, the system is stacked against disabled people and must somehow be undermined or at least understood.

Monday, December 1, 2008

Vermont Easy Access

My son and I have just returned from a ski trip to Vermont over the Thanksgiving holiday. While my teenage son ignored me driving home, I thought about the difference between New York and Vermont. Suburban New York and New York City are hard places to live. Taxes and the cost of living in New York are outrageously expensive. In my estimation the trite old line, if you can make it New York you can make it anywhere, holds true. Given the hard nature of living in New York, I am always taken aback by how different Vermonters are. Sure I know the Vermont economy is based on tourism and people are paid to be be nice when working. But Vermonters strike me as uniformly polite and open minded.

I realize the above are sweeping generalizations, many exceptions exist and like all states Vermont has positive and negative aspects. Yet as a wheelchair user I am struck by how different Vermonters respond to issues of wheelchair access. For instance, most ski resorts have adaptive ski programs and welcome disabled skiers of all types. Ski lodges are far from 100% accessible architecturally but a good deal of thought has been put into getting around physical barriers. Beyond the slopes what draws me to Vermont are the small towns. It is in these small towns where one gets a sense of Vermont culture with their archetypical general store, church, and school. These towns that dot the landscape vary greatly in terms of wheelchair access. Some towns are hopelessly inaccessible. Yet what strikes me is that a sincere effort is made to include wheelchair access from a cultural point of view. That is, small town Vermont wants to be accessible. When the issue of wheelchair access comes up it is not just a matter of law, a legal requirement, but thought to be the right thing to do. To me, this highlights the difference between Vermont and other states such as New York. For example, at the Gap nearest to my home the newly renovated store is legally accessible. The rear and front entrance is accessible, a wheelchair lift is installed to enable me to go from the adult to baby Gap store, and changing rooms as well as the bathroom are accessible. Yet this Gap is by far the most inaccessible place to shop. The rear entrance is routinely blocked with stacks of boxes and merchandise. To enter here, one must press a buzzer and wait for an employee to move all the boxes that can be stacked very high. Because kids love to press the button employees always ignore the buzzer. Once inside, the wheelchair lift, changing room, and bathroom are all kept locked (only the hard to locate manager has the key). Once opened the wheelchair lift is used to store trash that must be removed. The accessible bathroom is just as problematic because it is used to store mops, buckets and cleaning supplies. Thus to shop at the Gap I must wait to enter, wait to use a wheelchair lift and bathroom and am entirely dependent upon a manager being present and available to help. I have complained to the store manager multiple times and sent email to Gap corporate about the multitude of problems. Nothing has ever been done and the Gap remains legally accessible but far from a practical place to shop as I know my business is not welcome.

This weekend I was thinking about the Gap when I went to a Vermont general store close to where we stay. I had been in the store a few times last ski season and liked the food that focused on locally produced products. There were multiple steps at the front but a rear entrance was wheelchair accessible. Like the Gap, the back door was blocked. My son entered the front and with an employee removed boxes so I could enter. I very politely told the employee that in my estimation the rear entrance was pointless if it was blocked. Amazingly, she agreed and said she would speak to the owner about the rear entrance and aisles in the store that were too narrow for me to navigate. Pleased by the response but skeptical I thought nothing would change. I was very wrong. My son and I were in the same general store this weekend and the rear entrance was not blocked. We entered and I immediately noted the aisles were much wider and I easily went to the front of the store where an employee asked if I had any trouble getting around. I told her not all and she said that was great because they had gone over the entire store and with a measuring tape to insure each aisle was 36 inches wide. In addition, the bathroom door was replaced and grab bars installed to insure it complied with the ADA. If there was anything else that they missed in terms of access she said she would appreciate it if I would let them know.

Obviously not all general stores in Vermont will be so pro active. In some instances making a general store accessible when it is 100+ years old and contains a butcher, deli, post office, movie rentals, gas station, and a myriad of other services is not practical. I know this as do the owners. But when access is "reasonable" this emphasizes a commitment that is all too rare. While the Gap and many other national brand name stores are legally accessible, that is they have met the letter of the law, they remain in reality grossly inaccessible. In contrast, the Vermont general store I described above wanted to be accessible legally and in reality. The general store valued my business and existence. It made the same "reasonable" effort as the Gap. Before I left the Vermont General store I told the woman at the register how great it was that the aisles were wide, the rear entrance really accessible and that an accessible bathroom was icing on the the cake. She laughed and said "You know aside from the fact it is the law it is just the right thing to do. Every store and building should be accessible because you have the right to enter". My son and I looked at one another in shock and when we were outside he said "Dad, imagine that a person that equates wheelchair access with civil rights. I told you not everybody that can walk is a bigot or dumb as a post".

Thursday, November 20, 2008

Go Irish!

This post is not about football but the city of Dublin. Thanks to BA Haller and Media dis&dat I read that the Dublin City Council is determined to make Dublin the most accessible city in the world for people with disabilities. Yes, you read that sentence correctly: the aim of the Dublin City Council is to make Dublin the most accessible city in the world by the end of the decade. Thus while American politicians are slashing and cutting services for people with disabilities and waiting lists for essential services are growing at an alarming rate on the other side of the Atlantic Ocean one city is embracing access for all disabled people in a big way. When I read about the aims of the Dublin City Council in the Irish Times I was skeptical. Such a lofty goal generates great headlines, positive press, and can be quickly forgotten within days. Based on my reading, the Dublin City Council is serious about becoming the most accessible city in the world.

I never cease to be amazed by the disparity in access for people with disabilities. One town can have a major commitment to access while a few miles away another town is grossly inaccessible. Wealth is not a variable. For instance, Greenwich, CT one of the wealthiest communities in the nation has been in the news because the renovations of the local YMCA have not as yet included wheelchair access. The YMCA is open and serving all Greenwich residents except for those that use a wheelchair. Disabled patrons are supposed to wait to enter the YMCA until next summer when renovations are complete. The backward and negative attitude of the Greenwich YMCA creates a sharp contrast to the progressive policies in other towns and highlights why Dublin's goal to become the most accessible city in the world is critically important. Simply put, the Dublin City Council understands the importance and larger meaning of making a city 100% accessible. According to Peter Finnegan, director of the council's office of international relations and research, access is not limited to ramps and elevators. "It's about people who are getting older, people with children in push chairs, people who might fall and be on a crutch for a period of time. People should realize that this issue is likely to affect them at some stage in their life cycle". Finnegan went on to state that "We're not just putting right the wrongs of the past--anything that's done in the future must be done to the highest standards". Wow! I cannot imagine any politician or public figure in American making such a statement.

As of today, Dublin is not 100% accessible and I am sure there are major issues that need to be resolved. However, the City Council goal is remarkable given the global economic turmoil. Dublin does not want to meet the legal requirements with regard to access they want to create universal access everywhere. This effort reminds me what happens when the bar for access is raised. When I was in college most universities were inaccessible and had no plans or desire to change. But Hofstra University where I earned my BA stated their goal was to make the campus 100% accessible. At the time, I thought this goal was nothing more than an effort to get a headline in local papers. My skepticism was misplaced--Hofstra was and remains a model for other universities in that the campus is entirely accessible architecturally and culturally. This is why I think Dublin's stated goal is so exciting. The goal of 100% access is something that all cities and towns should strive for.

Still a skeptic, I have spent much time reading about Dublin's plans for access for all people with disabilities. The website created by the Dublin City Council, Access Dublin, is impressive if not a model to be repeated by other cities. The plans calls to improve the infrastructure of roads, footpaths and building as a starting point. An audit of the city in terms of access is under way and will include both private and public facilities. The information garnered is available at Access Dublin and residents and businesses are encouraged to comment about all facilities. Disabled Go has been hired and have fanned out across Dublin to identify and assess what is and is not accessible. A list of public and private buildings, parks, roads, streets, pavement types, and pedestrian crossings are all evaluated and available on line. Complaint procedures are simple and easily completed. Raising awareness about the culture of disability is part of the plan to empower disabled residents and visitors. The Dublin plan created and being enacted upon is worth reading and explained in 64 detailed pages.

When I finished reading the Dublin plan for becoming the most accessible city in the world I realized two things: first, too much of my work day was lost. Second, the goal of every city and town in the United States should be 100% access. Our law, the Americans with Disability Act, has enough holes in it to drive a truck through. Frankly, the older I get the more angry I become at how the phrase "reasonable accommodations" is often morphed into second rate services and exclusion both architecturally and socially. These so called "reasonable accommodations" do not seem reasonable much less fair to me. It does not help that the people who usually decide what is a "reasonable accommodation" are often not disabled and know little about disability. For example, rear entrances to buildings with a sign and buzzer never work. Sure the buzzer may buzz inside but no one answers or at best an extensive delay is involved. The Dublin plan does not allow this sort of failure--100% access means exactly that, total and 100% access. Total access means total equality. What a radical idea. Go Irish!

Wednesday, November 19, 2008

The Most Dangerous Stereotype

I doubt many readers in the United States know who Noel Martin is. Until this week, I had not thought about Mr. Martin in a long time. I recall reading his autobiography, Call it My Life, and found it deeply depressing. Martin became well-known in 1996 when he was paralyzed by Neo-Nazis. At the time he was paralyzed Martin was construction worker and his book was memorable to me for two reasons: first, he wrote with passion about racism and the prejudice black and disabled people encounter. Second, Martin's view of life post disability was morbidly depressing and he wrote that he would commit suicide. Martin is back in the news thanks to a BBC Radio interview conducted by Liz Carr and an "Open Letter" Carr wrote entitled "Dear Noel, is life really not worth living?"

Martin is if anything consistent about one thing: he thinks life as a disabled person is not worth living. He is clearly miserable and has maintained for sometime that he wants to commit suicide at Dignitas, the same Swiss "clinic" where Daniel James died. I consider Martin's firm belief that life with a disability is not worth living to be the most dangerous stereotype people with a disability must reject. Polls conducted in the United States and Europe consistently reveal that when asked if life with a severe disability is worth living the overwhelming number of people respond with a resounding no. In fact, polls consistently show fear of disability is the primary concern about aging and that most would prefer to die prematurely than age into life with a disability. Passages in Martin's book and interview with Carr on the BBC reflect this belief. Martin is adamant that he is not living but rather merely existing. He bemoans the fact he cannot feel anything (Martin is a quadriplegic) and can only watch the world go by. In his autobiography he provides readers with the graphic details of what his life is like and as most paralyzed people can confirm, myself included, the details are not not pretty. Martin maintains that assisted suicide clinics such as Dignitas are doing paralyzed people a favor. Martin notes that 70% of people in Britain would prefer to die than live life as a quadriplegic. Given his physical limitations and dependence upon others, Martin thinks the laws against assisted suicide that force people to sneak out of the country to die make no sense. Martin's views are well within the norm, a norm that is becoming increasingly common. I have no doubt the belief that death is preferable to life with a disability will become more entrenched as demographics reveal a rapidly aging population exists in Britain and the United States.

The real impediments to leading a rich and full life for disabled people is displaced by a focus on mundane or routine bodily functions. How do you get dressed, urinate, have sex, cook, clean, brush your teeth, wash your hair, put on a jacket, drive a car or get a job when you cannot walk? Each and every one of these concerns and many others have a standard set of solutions. The real problem disabled people encounter is as simple as it is obvious: their lives are not valued. Martin knows this as do many people with a disability. Martin has elected to accept this social reality, a concession that is as deadly as it is dangerous. The social failure to value the life of disabled people is reflected by substandard care and a system that grinds down and crushes the dreams and ambitions of countless disabled people past and present. Society does not want to question why Martin has a huge pressure sore and has not left his bed in months. Society does not want to know why an electric wheelchair costs as much as a used car. Society does not want to know why 70% of disabled people are unemployed. Society does not want to know why mass transportation systems are difficult or impossible to access. Society does not want to know why disabled people are so seldom seen at sporting events. Society does not want to know why children with disabilities are sent to "special schools". Society does not want to know why quadriplegics often end up in a nursing home.

Instead of solutions to the above issues society applauds people like Daniel James, James' parents, and Martin that want to die. Killing disabled people and accepting the fact their lives are not worth living is a simple solution to a problem that need not exist. Disabled people are thus forced into a bizarre situation-defending their right to exist. At issue is not equal rights but life itself. This is why Martin's desire to die and James suicide are worrisome. In Carr's interview with Martin she argues that life with a disability is worth living and in her open letter to him she wrote that one of the "main problems I have with assisted suicide stories like yours is that the media perpetuates the idea that to be disabled or ill must be the greatest tragedy of all. Disability inevitably equals no quality of life. I know when people read your story, many will agree that yes, if they were in your situation then they would want to die too. Most people are so scared of illness, of disability, of getting older, that wanting assisted suicide is seen as an entirely rational desire. What scares me is that views like these will also be held by the doctors, the media, the courts, the government and all others who have the power to decide if we live or die".

Carr, Martin, myself and disabled people have much to fear. This fear is very real, as real as the fear of disability itself. The accepted stereotype that life with a disability is not worth living is dangerous. This why I am reticent to complain about any physical or psychological concern I may have about my body and mind. If I seek medical treatment will the doctor, nurse, or hospital administrator consider my life not worth living and my existence an overwhelming burden on an already over taxed health care system. If I am depressed, will a psychiatrist consider depression a normal reaction to disability and not prescribe medication. My concerns are not limited to a medical setting. Is the service I receive at a store substandard because my presence is thought to hurt the business' image. Are airline services substandard for disabled people because it is assumed we cannot work and our time is not valuable? Do my neighbors resent me because the presence of a disabled person or group home decreases the value of their homes? I sincerely doubt those that walk think about these questions. Instead, when they see a person with an obvious disability they think "poor bastard his life must not be worth living". This is a dangerous thought process and unlike my bipedal peers I wonder how many people are now living in a nursing home or worse dead because of it. Sobering thoughts at a time when the economy and major corporations are in great distress.

Thursday, November 13, 2008

Daniel James Death and the Dangerous Public Response

I continue to scour British newspapers for stories about Daniel James. Based on my reading, the vast majority of people continue to praise James parents as "courageous" and "selfless". What has been left unquestioned are the implications of James decision to commit suicide in terms of the lives of people with a disability. If Mr. James is perceived as having tremendous inner strength to end his own life and had the support of his loving parents what does this say about people with disabilities that choose to continue to lead rich and productive lives? In the estimation of one woman, Sue Garner-Jones, she is now perceived as selfish for merely wanting to live. In an article in the Liverpool Daily Post Garner-Jones stated that "People make their own decisions about how to live their life. But there's a lot of talk about bravery and courage for people who are opting out of living their lives. I didn't like the inverse of that". The controversy that surrounds the death of Mr. James has Garner-Jones and many disabled people worried. According to Garner-Jones, "I am seriously concerned that this might have a detrimental effect on anyone who lives with a disability, or cares for someone in this situation, especially since Mr. and Mrs. James referring to his life as a tetraplegic as second class".

When I read Garner-Jones words I was delighted. A voice in the wilderness has spoken out and cut to the heart of the debate about Mr. James death. People with disabilities are not second class citizens. Disabled people have the right to live and enjoy the same civil rights as those that can walk. Those of us who are disabled are not selfish nor are we a burden on society or a drain on the health care system. Paralyzed people are not terminally ill--they have a physical deficit that is compounded by society. As one who is disabled and proud I know that disability is a social construct and that the real problem is not paralysis but the obstacles placed on top of it. If you want to talk about bravery I suggest you forget about Mr. James. To me, he and his parents are cowards who chose an easy way out. The people that are brave are like Garner-Jones who gets up every morning, goes to work, and will most likely encounter needless bigotry at some point during the day. The bigotry Garner-Jones encounters is disability based and relentless. It is based on the false assumption that she is somehow inferior, a tragically flawed human, because she cannot walk. Garner-Jones will be stared at, belittled, degraded, and ignored. Like Garner-Jones and many others, I know far too much about this sort of "spoiled identity" to use the phraseology of Erving Goffman. Tragically, Mr. James will never learn about this nor will he ever be able to assert his civil rights. This takes a kind of bravery James and his parents did not possess.