Protest Jerry Lewis

Piss on Pity is a great line I wish I came up with. It is somewhat startling, certainly subversive, and makes people think. For those familiar with disability rights, it has instant recognition. I smile every time I read those three words and have confidence in whoever utters them or dares to wear a T-shirt with the words boldly printed on the front. One of the people I think of when I see Piss on Pity or see a particularly effective disability rights protest is Laura Hershey. Hershey is an effective disability rights activist, speaker, and writer. I have never met her but have always been impressed with her writing. Hershey is my age and was a poster child for the Muscular Dystrophy Association. This fact has come back to haunt Jerry Lewis and the MDA that continue to raise money based on the basest form of pity. As reported by BA Haller, Hershey has a new Facebook group: Tell Oscar--NO Humanitarian Award for Jerry Lewis! Hershey words strike a cord with every person that supports disability rights. She is not a woman who minces words. Here are two great quotes from Facebook:

"Disabled people want RESPECT and RIGHTS, not pity and charity".

"On February 22, 2009, we won't be staying in our houses watching the Academy Awards. We'll be publicly objecting to this award. We'll be defending our own humanity against this so-called humanitarian.

I wish I could attend this protest. From the East Coast I will support Hershey and all those those that are willing to assert their civil rights and oppose the counterproductive MDA telethon. Jerry Lewis may raise a lot of money but it is all tainted--it is dirty money. Pity as utilized by Jerry Lewis and the MDA undermine four decades of legislation designed to protect the civil rights of disabled people. Social equality is what disability activists such as Hershey have strove for. It is what I fight for every time I do not want to leave my home because I fear being discriminated against. No amount of money Jerry Lewis raises is worth the damage he causes. Hershey and thousands of others are not "Jerry's kids", objects of pity. These men and women are human beings, born with and entitled to the same civil rights as any other American. Jerry Lewis does not merit a humanitarian award but rather a swift kick in the ass.

David Paterson, SNL, Humor and Disability

Based on my reading of various newspapers and blogs there are plenty of people angry about the SNL skit that mocked David Paterson. As always, the local newspaper headlines about Paterson are too clever for me, for example the NY Post headline "Paterson in a Blind Rage over SNL Skit", was misleading. For those that missed SNL, the skit in question was part of the "Weekend Update" segment and featured Fred Armisen as David Paterson. Armisen imitated Paterson's wandering eye, voice, unassuming presence and admitted, though dated, use of drugs and extra marital affairs. All this is fair game and as always SNL made good use of this stock political fodder. But this was not enough for SNL. No they had to take standard political comedy to another level and mock Paterson's blindness. To me, SNL crossed the line when they had Armisen unable to orient himself to the camera location before he spoke, hold a chart upside down, and then once the skit was over wander aimlessly around the set. None of this was funny. This was humor based on hopelessly antiquated stereotypes about blind people. If I were blind, I would have been deeply offended.

I take exception to the SNL skit for good reason. Go ahead and make fun of Paterson--he is not immune from political satire. In fact, Paterson effectively uses humor in many of his speeches and he is known for being an affable sort of person. This has served him well as he is the polar opposite of his intense predecessor Eliot Spitzer whose bellicosity was legendary. The point here is that Paterson can not only take a joke and deliver one as well. What SNL did had little to do with humor and much to do with ridicule and disability based bigotry. The SNL skit premise was that Paterson was not competent because he was blind. By extension, SNL assumes viewers consider all blind people to be incompetent as well--lost wandering souls in need of assistance. How can blind people like Paterson hold a job? How can a blind person be competent? What comes first in asking these questions: blindness. The disability, that is a physical deficit, is foremost in the minds of viewers and the writers of SNL. This is a problem and where SNL truly failed. SNL is better than stock humor; they are supposed to take satire to the next level. Thus I see the SNL skit as a double failure because they relied on bigotry based humor and missed a golden opportunity to highlight profound flaws in our culture that prevent disabled people from such ordinary things as employment, access to mass transportation, and routine social interaction. Surely the writers of SNL know that 70% of all blind people are unemployed. I am equally sure the writers of SNL read many of the headlines and articles about Paterson when he was named governor and are aware he has repeatedly demonstrated his competence.

The above leads me to ask why did SNL take the easy way out and ridicule a man for a physical deficit when there were so many other possibilities? Perhaps Chris Danielsen, spokesman for the National Federation for the Blind, is correct when he points out that SNL has a long history of mocking the blind. When I first read this I was skeptical but then thought back to some of Eddie Murphy's mean spirited impressions of Stevie Wonder. This in turn led me to think that not much has changed in the last twenty years when it comes to disability humor. It is socially acceptable to mock people with a disability on TV, in films, and at school. The incompetence of disabled people is inherently funny and I am forced to agree with Danielsen that some things need to be taken a little more seriously. I am not opposed to humor but as Danielsen pointed out "When you have a perception problem like we have..." and "70% unemployment its not because we can't work. Obviously the governor of New York is blind, and he's doing the job. Whenever you have a portrayal that calls the basic capacity of blind people into question that's a potential problem". Yes, it is a problem and it is not one bit funny. Do not take my words out of context: I am not humorless. Humor has place in society and can be an effective means of social change. Yet humor can also reinforce baseless prejudice and that is exactly what the SNL skit did.

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.

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.

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.

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".

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!

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.

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.

Assisted Suicide and Disability

Assisted suicide has thrust itself in the news. In Washington voters recently passed an Oregon State type assisted suicide bill. Other states such as California and Vermont might legalize assisted suicide as well. In the U.K. the death of Daniel James has promoted headlines and a fierce debate about the merits of euthanasia. Some characterize Mr. James parents who escorted their paralyzed son to a Swiss assisted suicide "clinic" as being saintly and loving; their actions were a rational response given their son's disability. Most of my friends, largely academics, support assisted suicide. Polls also show the majority of Americans support assisted suicide. I readily understand why many support assisted suicide. I vividly recall seeing my father in ICU after he had a major stroke. What I remember the most aside from seeing my father on the brink of death were the other patients. Many of the people I saw would not recover and had no loved ones to care for them. I recall thinking at the time that people may be living longer but wondered about the quality of that life. I also recall questioning whether the resources spent to extend those lives was worthwhile. My emotional response was soon tempered by the harsh reality that once society determines who is "valuable" enough to live we have decided that some human life is not worth living. Society may be killing its members out of kindness but the end result, death, speaks volumes about our culture and what sort of life we value.

I oppose assisted suicide because it is too easy to kill. Proponents of assisted suicide point out that the merits of assisted suicide are self evident. Why extend the life of people who are terminally ill and in severe pain? Shouldn't an individual have the right to determine if their life is worth living? The problem with this line of reasoning is that those who choose assisted suicide are often not terminally ill. In Oregon where assisted suicide has been legal for over a decade psychiatrists that interviewed those that wanted to die discovered one in four people had undiagnosed clinical depression. In my estimation assisted suicide discriminates against people that have been historically disenfranchised. Here I refer to people that are physically or mentally disabled. The fear of disability permeates our culture and many people believe death is preferable to life with a disability. This is why Mr. James parents helped end their son's life. This fear of disability is also why Mr. James parents have been lauded in the press. This sort of logic scares me to death--pun intended.

Some readers may doubt the grounds upon which I am fearful. Surely a paralyzed man such as myself with a home, family, and job will be treated the same as a person that walks into a hospital. Wrong, very wrong. Doctors are human beings whose education does not preclude their ability to unknowingly or knowingly discriminate against disabled people. If and when I enter a hospital I know I am a liability and will not receive the support needed. Thus if I expressed an overwhelming desire to end my own life I wonder what the response would be. Would the attending physician request a psychological consult or would this person think my desire to die was understandable given the fact I have been paralyzed for over 30 years. This is what I am fearful of, disability based bigotry. This line of reasoning, death is preferable to disability, provided the social justification for loving parents to kill their own son. If parents can rationalize killing a child, I shudder to think what society has in store for me.

Proponents of assisted suicide are quick to point out that people who are suffering from fatal diseases should have the right to end their own life. Why should a person and a family suffer when death is inevitable? This logic is often accompanied by a heart wrenching story about a terminally ill person. Not only does a dying person needlessly suffer but the family is plunged into debt because they lacked adequate medical insurance. The only response to this tragic story is that the ill should be in control of their life and death. Wesley Smith characterizes the intent of assisted suicide as "unquestionably intended to be kind; but they are not. With such deaths emotively and sympathetically reported in the media, and with every lawsuit that chinks away at the laws intended to protect people with serious difficulties from suicide, mercy killing becomes more easily envisioned, more comfortably embraced" (Smith, Secondhand Smoke).

Mr. James death and his parents decision to facilitate it so soon after he was disabled haunts me. I mourn the life of a man I did not know and cannot begin to fathom the actions of his parents. I worry about the implications of James' death. Will a doctor that read about James death decide a person who had a traumatic spinal cord injury life is not worth living and withhold treatment? Selfishly I worry about myself. Will a doctor decide my life is not worth living? I also worry about the degree to which Mr. James death has affected the euthanasia debate in the U.K. Will his death impact Debbie Purdy's case. Ms. Purdy has MS and wants to know if her husband will be arrested should she decide to end her life at the same Swiss clinic where Mr. James died.

One other variable merits mention with regard to suicide and the fear of disability. If I have one learned one thing about life with paralysis it is that caring for such a body is expensive. I know this as does the medical establishment and insurance industry. Given the current global economic crisis the cost of caring for those people with a disability is under intense scrutiny. Budgets across the country are being slashed and the first services that are eliminated affect those that can least afford it--people with cognitive disabilities. Waiting lists for essential services are the norm and growing. Many I know worry American society is taking a step backward to an era when people with cognitive disabilities were warehoused in institutions. Conditions at these institutions were deplorable. The point I am trying to make is that all life has value. The debate about assisted suicide has broad and long lasting implications. There is in my estimation nothing for medical ethicists to agonize over in terms of assisted suicide. Facilitating the death of a human being is wrong and cannot be justified at any level.

NBC Documentary on the 2008 Paralympics

Yesterday NBC broadcast the 90 minute documentary about the 2008 Paralympic Games. The broadcast was a series of biographical stories about American Paralympians. For the most part, the documentary did not present viewers with mindless emotional "feel good stories" that dominate adaptive adaptive sports reporting. Yes, overcoming was a major theme throughout the documentary but this is typical of sports documentaries. Three primary problems undermined the documentary. First, the sound track was dreadful. The music firmly fit into the "inspirational" genre and was at direct odds with the statements made by the Paralympians. There is not a chance such a musical score would ever appear on any other sports documentary. Second, at no point did the documentary delve into the rules, categories, and controversy that surround the competition. Nor was there any discussion of how costly and cutting edge the technology utilized by the athletes. Assuming most people had no exposure to adaptive sports, the viewer simply cannot appreciate or begin the grasp the athletic accomplishments of those portrayed. Third, the biographical segments focused far too much on how the athletes were disabled. To me, this was beside the point. I tuned in to see world class athletes compete not discuss their respective disability.

The power of the documentary can be squarely placed on the articulate and incisive comments by the athletes themselves. For instance, Cheri Blauwet, was particularly impressive. Frankly I thought I would never see the day when I heard someone say on television that "disability is a social construct". I was also impressed by a scene in which an amputee Paralympian is shown talking to school children. The woman in question allowed the kids to hold and pass around her prostheses. The look of wonder and awe on the face of the children is priceless. Rather than perceiving disability as a negative, the kids were impressed and will no doubt think of amputees as being cool.

Given the right kind of exposure, I think the Paralympics could become a mainstream sport. There are many practical and social impediments that would need to be overcome. As pointed out in a column in the Los Angeles Times, the practical problems that prevent the Paralympics of getting any media coverage include the timing and cost. The Paralympics take place after the Olympics Games and the people that cover sports are tired. Budgets are spent and the football and baseball seasons set to dominate all reporting. While I have no ready answer for these logistical issues, I suspect they can be resolved. It is the social reluctance to devote the time and space to adaptive sports reporting that is the real problem. Selling adaptive sports to those who have no clue as to the intense nature of the field is not easy. The stereotypical question asked is who wants to see a bunch of disabled people compete? I suggest for those that ask this question to watch the X-Games. Last winter mono ski races were included for the first time. The coverage was excellent and the races were extremely exciting and popular. The crowds were enthusiastic and imagery captivating. In short, adaptive sports have great potential and NBC took a very small step toward broadcasting viewing that is gripping.

NYT Provides Adaptive Sport Stereotype

The media and the New York Times has provided a perfect example of how to not cover adaptive sports and the Paralympics. Placed under the heading "More Sports" Richard Sandomir has written "Long Overdue, Telecast Isn't Short on Emotion", a review of the NBC documentary about the Beijing Paralympics.

This is how Sandomir started his review: "As I write this, I have finished crying inside my cubicle after watching NBC's documentary about the Paralympics in Beijing. It is a 90-minute, continuous "oh my" journey with amputee sprinters and swimmers, wheelchair basketball players, a paralyzed shot-putter, a sailor with Lou Gehrig's disease..." As I noted yesterday, what always comes first when describing an adaptive athlete is not the person but the disability. While I will acknowledge Olympic coverage always focuses on individual athletes and past struggles, the point of such stories is to highlight an athletic accomplishment. There is no such focus when the media covers adaptive athletes. In fact Sandomir wrote that one athlete "devastated by a brain tumor" was "not competitive in the race that was shown, but that was not the point". Hugh? Winning was not the point? When I read this I was stunned. Would any athlete that competed in the Olympics be characterized in this way, where "winning is not the point". I was under the impression that any athlete that competes in the Olympics or Paralympics is a world class athlete driven to win. Given the sacrifices involved in training, winning must present an overwhelming drive. Word class athletes compete to win, to be the best, and defeat other world class athletes. It is the ultimate success in a given sport. But after reading Sandomir's article, one could easily conclude this is not the case. For Paralympians winning is not the point!

Among other poorly chosen lines include the following:

Quoting the producer "Every race, every event has some incredible story of inspiration".

"Not to denigrate the best of them, but Paralympians really have life stories to stir the soul".

The producer "would return home. usually teary, after editing footage. My wife thought I was going hormonal on her".

"A paralyzed veteran of the war in Iraq, who found new purpose in the shot-put. He cannot spin on strong legs".

NBC should have shown the Paralympic games live. Even now they are only showing highlights of the games on Universal Sports from Monday through next Saturday. For those that are able to watch I am hope you see athletes competing to win not inspire. I hope viewers will acknowledge the athletic prowess involved not a physical deficit. When this happens viewers will see an intense athletic competition that is gripping.

Adaptive Sport Imagery

This Sunday November 9 NBC will broadcast a 90-minute documentary about the 2008 Paralympic Games held in Beijing. The documentary will be narrated by NBC Sports Bob Costas. Produced by award winning NBC Sports producer David Michaels, the documentary will focus on the lives of eight athletes and the men's wheelchair basketball team. The documentary is sponsored by GE.

I look forward to watching the NBC documentary. Readers of this blog know I am interested in adaptive sports and enjoy skiing and kayaking. I ski and kayak because it is fun but am all too aware that the inclusion of disabled people in sports remains out the norm and is socially significant. Society simply does not associate athletic ability with disability. Thus when people see a paralyzed person such as myself skiing or kayaking they often question their preconceived notions of what life must be like with a disability. When participating in sports I feel like I become an ordinary person, that is my disability is not the first thing people observe. In sharp contrast to the positive reaction I get when participating in a sport, the media does a dreadful job covering adaptive sports. Televised stories about adaptive sports reduces the athletic achievements of disabled athletes to "feel good stories". At issue is not the athletic accomplishment but the fact a person "overcame" their disability. This observations is not original but is important. Why is it important? Disabled people in American society are routinely required to provide explanations about disability. Every person I know who has a disability is asked "What happened to you?" or "How did you become paralyzed?" Leonard Davis and Kenny Fries, gifted disability studies scholars, maintain these rude and intrusive questions set the tone for a particular sort of disability based narrative. In Fries The History of My Shoes and the Evolution of Darwin's Theory has written:

when we speak of disability, we associate it with a story, place it in a narrative. A person became deaf, became blind, was born blind, became quadriplegic. The impairment becomes part of a sequential narrative. By doing this we think of disability as linked to individualism and the individual story. What is actually a physical fact becomes a story with a hero or a victim. Disability becomes divorced from the cultural context, and becomes the problem of the individual, not a category defined by the society. The dialectics of normalcy--for someone to be normal, someone as to be not normal--is kept intact.

This narrative is the reason why I dislike documentaries that focus on adaptive sports and disability in general. Disabled people are just not normal every day people. Their lives are ever so special and they are perceived to be "amazing role models" for others. The focus here is exclusively on the individual and a given physical deficit. It is very easy to gush about adaptive athletes. For instance, David Michaels has stated that "In 30 years of covering Olympic sports, I have never witnessed such a rich tapestry of stories and competition. Every race, every event brings wonder and excitement". If adaptive sports are so exciting, filled with such gut wrenching drama why do they not appear on television? Why is there no reporting of adaptive sporting events in newspapers on a daily basis? Why did no major network broadcast the Paralympics? Why does the NCAA basketball tournament in March dominate the news but no one discusses wheelchair basketball? Why are Paralympic athletes woefully underfunded by the USAOC?

The questions I want answers to are rarely if ever discussed. Answers I want to know would require a radical rethinking of the accepted discourse associated with disability. The point I am trying to emphasize is fundamental. It gets to the heart of the disability rights movement. Like others, I do not want to be defined by my disability. I am not Mr. Wheelchair dude. I am a person with a physical disability. I am a human being. I am a father, son, teacher, writer. All these personal characteristics have nothing to do with disability or my wheelchair. Like I said, I am a human being.

Election Victory and a Dose of Reality

I am thrilled with the Obama victory. I am equally thrilled with the massive turn out and overwhelming number of votes cast for Obama. For the first time in almost a decade, we have a president who is not only competent but an eloquent speaker. We also have a man in office that understands disability and included a mention of us in his victory speech. This is amazing to me as I was deeply worried that a silent bigotry existed in this country that might affect the election result. After all it was less than 50 tears ago that George Wallace won 17% of the general election based on his support of racial segregation.

Lost among the back slapping and happy news about the Obama victory is what took place in Colorado. I hate to be a harbinger of doom and gloom but I am disturbed by the fact Colorado voters soundly rejected Amendment 51. What was Amendment 51? It was supposed to provide more than 12,000 people with Autism, Down Syndrome, Cerebral Palsy and Mental Retardation with critically needed care by raising the sales tax in the state by 1% That number, 12,000, is how many people in the state are not currently receiving any support or care. These are people that are among among the most vulnerable, those that are reliant on others to support them. What the voters of Colorado have done is send a very clear message: voters stated that they would not spend a penny on every $10 dollars spent to fund services for people with developmental disabilities. Yes, a penny is too much to ask for. An extra penny is too much to spend on support services for 12,000 people with developmental disabilities. This extra penny was also a short term tax--lasting only two years.

Those that supported Amendment 51 such as Marjio Rymer of ARC of Colorado and chairwoman of the coalition to End the Developmental Disability Wait List has been gracious in defeat. She blames the economy for why voters soundly rejected the tax increase. Newspaper reports all echo Rymer's comments about the economic basis for why Amendment 51 was rejected. While the economy is undoubtedly a major factor, I think at a fundamental level the percentage of people that voted against Amendment 51 indicate an inherent bias against people with developmental disabilities exists. Given this, what you do not read about is how woefully underfunded Colorado expenditures are for people with developmental disabilities. According to David Braddock at the University of Colorado expenditures in the state are 73 % below the national average. In rejecting Amendment 51 by a ratio of nearly 2-to-1 the voters have sent a clear message to the disability community: budgets are tight, revenues are decreasing and we do not value your existence. This reality has and will continue to hurt disabled people and their families. Simply put there is no safety net in Colorado for a group of people that desperately need one.

New York Times and Palin as Potential White House Friend

I look forward to having a fire in my wood burning stove tonight. The first section of the New York Times I will burn to get my fire going will contain an article by Julie Bosman entitled "In Palin, Families of Disabled Children See a Potential White House Friend" (11/3/08). For those unfamiliar with disability issues Bosman's article is misleading. If I did not know better, it would be easy to conclude that every disabled person in America, especially parents of disabled children, support Palin. Bosman wrote that Palin "continues to attract enthusiastic crowds wherever she travels, and invariably among her supporters are those drawn by her advocacy for children with special needs". Bosman also notes that since Palin was named by McCain to be his running mate she has "made Trig, and children like him, the emotional center of her campaign".

I agree Palin has indeed made her son Trig and the issue of "special needs children" the emotional focal point of her campaign. Palin has said many things that strike a chord with disabled people and parents of children with "special needs". As many disabled people know, the biggest obstacles they encounter are social. Thus it is heartening to hear Palin acknowledge the stigma and social isolation that is placed on top of existing physical and cognitive deficits. Sadly, this is as far as Palin has been willing to go, acknowledge bigotry against special needs children exists. Her supposed "policy speech" about disability broke no new ground. Her hastily constructed position on disability pales in comparison to what Obama outlined long ago. Palin's advocacy for special needs children is a myth--it simply is devoid of any basis reality. Palin has not been nor is an advocate for disabled people. What Palin has is plenty of emotion. Sarah Palin hugs children with special needs and her son Trig is often seen being held by his older siblings. We also know that Trig went trick-or-treating with the Palin entourage and was dressed as a baby elephant. All these images are supposed to let us know Palin understands the struggles special needs children encounter.

When I see the imagery the Palin campaign generates two things happen: first, I get angry that people unfamiliar with disability fall for such obvious emotional ploys. Second, I wonder why journalists, professionals who are paid to report the news, rarely if ever refer to the disability rights movement. Disabled people I know all openly mock Palin. There are plenty of blogs, editorials, and protests such as those organized by ADAPT that are ignored by major news outlets--it is as though disabled adults simply do not exist. We disabled adults are not nearly as cute as the little kids Palin is shown hugging. Visuals of adults that use wheelchairs asserting their civil rights are not what others want to see. This is the reality that Palin has conspicuously ignored--those cute disabled kids she likes to be photographed hugging eventually become disabled adults. The reality for disabled adults, especially those with a cognitive deficit, is that support services are grossly inadequate. The fact is support services from day care to job training for people with cognitive deficits is woefully under funded. The lack of funding today has reached draconian levels. The people that suffer the most in my estimation are the very children Palin is seen hugging. Palin is opposed to the Community Choice Act. Palin recently spoke out against Amendment 51 in Colorado where 12,000 disabled people are on waiting lists for supportive services.

I do not get Palin's appeal. The parents of special needs children Palin loves to hug know more than I do about the exclusion of those with Down Syndrome and a host of other cognitive deficits. Why do such parents embrace Palin then? I suspect they come from the traditional base of the Republican Party and will vote for Palin because she is opposed to abortion and a devout Christian. Having a child with Down Syndrome is simply icing on the cake as it is assumed Palin has an inherent understanding of what they experience. This emotional response ignores the social reality of what it is like to be disabled in American society. It also shows exactly how desperate parents of special needs children are and places organizations such as the National Down Syndrome Congress in an awkward position. Politicians that publicly embrace the needs of special needs children are few and far between making it very difficult for them to critique Palin. What worries me the most is what will happen if McCain and Pain win the election. Palin will be portrayed as the caring person in the White House, the disability expert who has a personal connection with special needs children. This highly emotional and visible position will deflect attention from the hard reality of budget cuts for a host of services that could and should empower disabled people. Sadly, this strategy has worked in the campaign and I see no reason to doubt it will work for a McCain administration I hope I will never see.

ER Super Crip Almost Gets the Hot Chick

Long ago ER "jumped the shark". Once an engaging drama/soap opera, ER is no longer a popular show. NBC really needs to put this show out of its misery. I do not get to see ER often but when I do it is usually dreadful. I was up later than usual last night grading papers and reading a new book. I had ER on as background noise which was a big mistake. I had read that a former character was returning, Dr. Barnett, a double amputee, for a cameo appearance. I was curious as to how ER would portray his return as a disabled character.

Dr. Barnett returned to ER and was in great shape. He is no longer an ER doctor. Instead he is now specializing in rehabilitation medicine, a logical switch given his disability. Dr. Barnett has radically transformed himself. When he was last seen he was a pissed off angry amputee and transformed into a super cripple. I am not sure which gross mischaracterization is worse, obviously subtle nuance is not possible for Dr. Barnett or disabled people. We have just character types: angry or perfect. What is clear is that Dr. Barnett has experienced a radical transformation and possesses advanced super human social skills. No mere mortal, he is a super cripple able to dispense advice to one and all. He is an "amazing man", mature, good looking, and he can not only walk but run. But he does not just run well, he has a high tech pair of prostheses like Oscar Pistorius. So when he goes for a run with the Nila, who is forever unlucky in her love life, along the Chicago Lake shore he not only runs faster than her he leaves her in the dust. The viewer is left to think: wow, those disabled people sure are great. They can run! They can walk! They can work! Gasp, they can fall in love! Holy cow, I sure hope to meet one of those people some day.

The scene that annoyed me the most was not of Dr. Barnett running like Oscar Pistorius. In a heartfelt scene with Nila his former lover before he was an amputee Dr. Barnett comes across as Ghandi-like in terms of sensitivity. He tells Nila he went home to Baton Rouge to mend a broken heart and body. Thanks to high end prostheses he does not appear to be disabled in any way. He tells Nila he has been through a hellish time and during rehab even tried "hurt himself". What is not spoken is that attempting suicide is a "normal" reaction to the prospect of living a life with a profound disability. But Dr. Barnett possess super human ability and if not for an importune knock at her door may have swept Nila off her feet and into her bedroom. This may make good drama but is so devoid of reality even I am virtually speechless. At no point does one get a sense of how hard rehab is, the obstacles amputees face when health insurance often dictate the type of prosthesis they will pay for, nor does one get an idea how expensive (over priced) artificial limbs are. I realize this is TV but even I can think of a few ridiculous ways the real obstacles amputees encounter could be hyped. In failing to portray Dr. Barnett as a normal man with a disability the producers of ER have lots of company. This also makes me wonder when or if it is possible to have a disabled character on TV show whose disability is used illustrate the social impediments to inclusion. This would be great drama and good TV.

People with a Disability are Real

I glance at the Wall Street Journal on a daily basis and have a love hate relationship with the newspaper. I am drawn to the sober financial analysis and appalled by the conservative editorials. Given this, I tend to avoid reading the editorials and stick to the financial reporting. Today I was reminded why I dislike the editorial content of the WSJ. I read "Palin Shows How to Transcend the Culture Wars" by William McGurn. I decided to read this editorial because of its subtitle, "A society should be judged by how it treats its weakest members". This was a big mistake as I do not think much of Mr. McGurn's opinions.

I take exception to much of what Mr. McGurn wrote in his editorial. For instance, he maintains that the national press corp has been accommodating to Obama and hostile to Mrs. Palin. McGurn also thinks that Obama has not worked very hard to move past entrenched culture war debates. In Mr. McGurn's opinion this failure on the part of Obama is unfortunate because Palin has given Obama a perfect opportunity. What is this glorious opportunity? Trig Palin apparently "has made the issue of special needs very real for the Palin family. Trig's presence on the campaign trail has also made him real to most Americans". This sort of logic is deeply disturbing to me because it ignores 40 years of legislative initiative and social progress. Between 1968 and 1990 fifty acts of congress were passed designed to protect or enhance the rights of people with a disability. These efforts culminated with the passage of the ADA and yet according to Mr. McGurn it was not until Trig Palin was born that people with "special needs" became real to the Palin family and most Americans. I can assure Mr. McGurn children with special needs are real as are adults with disabilities. We have rights and some people such as myself are not afraid to assert them. The real issue extends well beyond the mere fact disabled people exist. Simply put, the core issue is that disability rights and civil rights are one in the same. This is not a connection your average American makes.

Unfortunately, Mr. McGurn is correct in some ways that disabled people are not real. We remain an invisible minority, isolated economically, politically, and socially. The facts in this regard are grim. The unemployment rate among people with a disability has hovered at 70% for decades. Mass transportation remains difficult or impossible to navigate and the lack of accessible and affordable housing is a significant problem for all disabled people. Mr. McGurn and others should know all this but choose to ignore the real issues. For instance, Mr. McGurn wrote about a family that has a child with Down Syndrome. The birth of this child meant he and the entire family would have a "hard road" in life. What I want to know is why almost 20 years after the ADA was signed into law will this family encounter so many obstacles? Why are the civil rights of disabled people somehow different than all those that can walk?

What truly bothers me about Mr. McGurn's editorial is that he utterly ignored what disability rights advocates have written. He also fails to acknowledge that Obama has been far ahead of the McCain/Palin campaign in terms of disability rights. All this information is readily available and a few quick google searches away. I thus find Mr. McGurn's comments about special needs misleading and, like Palin's speech last week, designed to prompt an emotional response devoid of reality. When one looks at the cold hard facts a different reality emerges, one where the oppression of disabled people is not just common but rampant. This is exactly what the American people do not want to confront: complex issues that demand serious attention. Instead, Mr. McGurn and Palin trot out well-worn and antiquated lines about special needs children that pull on the hearts but not the minds of the American people.

Power, Courage and Disability

My weekend was a bust. On Saturday our power went out and I was reminded just how dependent I am on electricity. While I coped well without an oven, toilets that flushed, phone, television, and internet service, my son was beside himself. Teenagers are so hooked into electronics and the internet it is almost comical to watch them function without them. I write almost because I too struggled without what has become essential. For instance, I missed watching a stirring comeback win for the NY Rangers. I also could not post a thing about Sarah Palin's first policy speech.

Having had a few extra days to think about Palin's speech concerning "special needs children" I am far from impressed. I did not expect much to come of her speech and sadly I was not disappointed. Other bloggers have commented about the specifics of what Palin said. Special Needs Truth 08, Wonk Room, and Go Becky have parsed the facts as stated by Palin. Two things struck me about Palin's speech: First, it was not really a "policy" speech. Maybe I am too cynical but I thought the aim of the speech was identical to all the other stump speeches Palin has delivered, specifically intended to prompt a sentimental response. Do not misunderstand me: there is nothing wrong with being sentimental, it is part of the campaign rhetoric designed to sway voters. Rather, I hasten to point out that all the sentiment in the world is not going to help "special needs children" or the adults they will become. Absolutely no new ground was broken by Palin and her three proposals, more choice for the parents of children with special needs, fully funding IDEA, and "reform and refocus". Good luck trying with "reform and refocus", a concept that is vague and, after reading her speech three times, I still have no clue what it means. As for giving parents who have a disabled child greater choice, this sounds great. But this choice does not mean disabled children are welcome in either public or private schools. The social and cultural isolation disabled children encounter is not necessarily related to the school they attend but the educators that operate those schools. These educators are under intense pressure to stretch limited resources and disabled children will be perceived by some as an odious financial burden. Finally, IDEA has been under funded since its inception. With McCain's governmental spending freeze I am at a loss as to how more money will be available for this program.

The unoriginal policies advocated by Palin brings me to my second point. There is a cultural divide in this country between those with and those without a disability. This divide exists because American society is unwilling to accept and include disabled people in routine social interaction. That is, the social structure of our society operates under the assumption that disabled people foremost "problem" is a physical or cognitive deficit. This is simply wrong. Based on my experience, the vast majority of disabled people rarely if ever complain about their disability nor do they consider it an impediment to leading a rich and fulfilling life. The "problem" is not one's disability but rather the added prejudice that is placed on top of a given physical or cognitive disability. While no one I know wakes up and thinks they will purposely discriminate against disabled people, this lack of specific intent does not make bigoted actions magically disappear. Thus what I had hoped to hear from Palin was a shift in her unrelenting rhetoric about helping "children with special needs". What I had hoped was that she would reframe her understanding of "special needs children" to a broader civil rights approach to disability. This did not take occur and I wonder if it ever will.

On the day she gave her speech Palin was welcomed by the Down Syndrome Center at Children's Hospital of Pittsburgh. Palin has also spoken to many families who have a child with special needs. Surely an individual has told Palin about the social struggles they have endured. I am equally sure a policy analyst has told her about the difference between a medical and social model of disability. In spite of this, Palin has not budged from her sentimental focus on "special needs children" and totally ignored the existence of disabled adults. I realize change is not easy and this is why I think Palin has failed to connect with a myriad of disability rights groups or garner the support of adults with a disability. At this time she lacks the will and courage to foster real change. By change I mean support the civil rights of all disabled people and focus the issue squarely within a human rights framework. She could do this by talking about the ADA, the UN Convention on the Rights of Persons with Disabilities, oppressive Supreme Court decisions such as the Sutton Trilogy or why the ADA Restoration Act was needed. All this could be done with direct reference to her son Trig who will be affected directly by these issues. In short, what bothered me the most about Palin's speech was that she lost an opportunity to make a fundamental difference in the public debate about the meaning and significance of disability in American society.

Parents and Disability

This has been a bad week. It has been three years since my father died. I will never forget the night he died and still mourn his death. Every night before I go to sleep the last thing I look at is a picture of him holding the reigns of West by West, a stakes winning race horse he owned. The look in his eyes is a mix of pride and happiness. This is how I remember him--a proud dignified man that could accomplish anything he put his mind to. His inner strength, discipline, and will power was inspiring and as a child more than intimidating. I both loved and feared my father. By fear I mean I always strived to meet and exceed his expectations because I did not want to disappoint him. I never felt pressured and in looking back on my childhood cannot imagine how a human could have been a better father. Amazingly, I can say the same thing of my mother, she too was an ideal parent. The older I get the more I realize how lucky I am to write this. Such a sentiment makes me shudder about what could have been, that is what my life might have been like had they not treated me as an equal to my siblings that could walk. Perhaps this is why I have been carefully following the news reports in Britain about the death of Daniel James. Why, I wonder, did James parents not react to disability the way my parents did.

Last night I had dinner with my mother and we spent more time that usual telling old war stories. By war stories, I refer to hard times I had growing up with profound neurological deficits during a medical era that did not include CAT Scans and MRI machines. While I recall far too many hospitalizations and painful procedures what I remember the most is my parents determination that I would receive the best medical care. In return, I was was expected to keep up with school work and they reminded me that just because I was sick did not mean I would be treated one iota different. My parents reminded me that I may have had physical deficits but my mind worked perfectly fine. I knew as they did a lot of kids were in much worse shape than me. The underlying message was that I should suck it up and move on with life. Pity was not in their realm of understanding. They told me and my siblings that in the Peace family no one gives up and all are treated equally. By extension, we were expected to stick up for one another and ourselves. If we encountered trouble beyond our ability we were expected to seek their help.

My parents tough love and belief in my innate ability was a life lesson I wish Mr. James parents had bestowed upon their son. When I told my mom about what Mr. James parents did, assisted in his suicide she visibly shivered. Her response reminded me of one of an encounter I had when I was first disabled. I recall going to high-school after I began using a wheelchair. I had not been to school for a long time and I was extremely anxious about returning. I was a senior and drove myself to school where I got my first lesson about the lack of wheelchair access. There was only one accessible entrance and handicapped parking did not exist. I moaned and groaned about this when I got home and my mother got increasingly short tempered as I spoke. She told me to stop complaining and do something about the lack of wheelchair access. I wondered what I could do as a student? She told me that when I drove to school he next day I should park in the principals spot since the school had no handicapped parking. If the principal had a problem with that, he should call her. I loved the idea, parked in the principals spot and during my first period the principal came into my class looking for me. He wanted to know why I parked in his spot. He was not amused and my peers looked at me in shock. With resolve I replied there was no handicapped parking in any school lot and only one accessible entrance. I did not know what else to do except take his spot since I had no where else to park. Satisfied with my answer, the principal left the classroom. The next day two handicapped parking spots were next to the principals space in the lot.

I learned two valuable lessons thanks to the seemingly minor experience described above. First, I had the total support of my parents. Second, my wheelchair did not, to borrow the words of Mr. James, make me a second class citizen. Thanks to my parents, I knew that I was no different than any other person that could walk. They expected me to defend my human rights. Thus when I think of Mr. James and his parents I feel deeply depressed. Why did Mr. James and his parents accepted society's overwhelmingly negative view of disability. Why I wonder could they not support their son's inherent humanity? Is walking really that important? I condemn the parents decision to have a hand in their son's suicide. It was a cowardly and selfish act. Because of their actions Mr James suicide is now more than a family tragedy it is a social statement. They have sent a clear message to all those that read about their son: the life of people who are disabled is not valued. Death is preferable to disability. This is a gross violation of the human rights of disabled people in England and beyond. My mother and father knew this 30 years ago. Too bad the rest of society has yet to acknowledge this fact.

Palin's Advocacy for Special Needs Children Needs Work

I am weary of Palin's rhetoric that she is an advocate for children with special needs. She has repeated this so many times that I think her statement has become a political mantra. Perhaps Palin thinks if she says "I am an advocate for special needs children" in every speech this will become a fact. I sincerely hope those unfamiliar with disability rights are not naive enough to accept Palin's words. I for one see through this smoke screen that has no basis in reality. Palin's advocacy for "special needs children" is a emotional ploy designed to sway voters and create the illusion that she cares about people like her son Trig. The reality is she is not in any way shape or form an advocate of special needs children or disabled people. Her action not her words demonstrate this.

When Palin was in Colorado early this week she spoke out against Amendment 51. Amendment 51 seeks to raise the sales tax by one cent on every $10 spent in the next two years. The tax is earmarked to help the 12,000 special needs children and adults who are on waiting lists to receive state service such as nursing care and job training. The money is specifically designed to help people like her son Trig and others with cognitive disabilities. Why is Palin against Amendment 51? She thinks "there's got to be an alternative to raising taxes. It's a matter of prioritizing the dollars already there in government". Does this mean the money already exists to help special needs children? If so, how does Palin intend to change existing priorities so children like her son Trig can enjoy the same civil rights as others? This is pretty hard to do when the McCain/Palin campaign does not have a platform that outlines how they would help special needs children and disabled adults. The bottom line, the gritty reality, is that Palin's words and actions do not correspond. She cares about special needs children in name only. Palin blew a chance this week to be the "advocate" she says she is. Maybe I am jaded from living in a heavily taxed state like New York but I would pay the modest sales tax increase for two years knowing it would help 12,000 people that desperately need state support. This is a matter of money and the human rights.

Daniel James and Fear of Disability

Mainstream media outlets in Britain continue to defend James decision to commit suicide. Euthanasia advocates are rallying around Mr. James parents, characterizing them as selfless angels who gave their son an escape from his body that was a prison. There is no doubt that Mr. James and his parents have the overwhelming support of the general public. I find this frightening and confusing.

I am scared and confused because I want to know what other people will be hailed or encouraged to kill themselves. Is it okay for all people with a spinal cord injury to commit suicide? If not, where does one draw the line? Is there a particular level of SCI that is unacceptable? What about people with MS or ALS? At what point is it acceptable for them to end their life? What about elderly people with dementia? Is their life worth living? Who gets to make these decisions? Does a disabled person get to have a say in whether they live or die? These question have insidious implications that affect all humans. James death has sent a message to disabled people and the general public--your life is not worth living. No one questioned why James felt like a "second class citizen", this social construct was accepted without thought. This makes me very worried and brings me back to one of the very first posts I made on this blog. I worry and am afraid to go to the hospital. What if a doctor I have never met thinks life with a spinal cord injury is not worth living. This doctor may have just read about the parents of a person with an identical injury that committed suicide. Perhaps this doctors assumes I consider my body a prison, my life nothing short of miserable. Given these variables, will I receive the same medical care as a person that walked in the door to the emergency room? In sincerely doubt it. And this is in part why the James case is so scary. While I do not want to judge Mr. James and his parents, I condemn the implications of their actions. I have a right to live a rich and full life as did Mr. James. I mourn Mr. Jones death and will continue to rail against the society that made him feel as though his life was not worth living.

Daniel James in the UK News

The death of Daniel Jones I wrote about yesterday has been officially sent to the Crown Prosecution Service Complex Casework Unit. This special unit deals with high-profile complex crimes. A CPC spokesman has stated that "The head of the Complex Casework Unite will review the police file and then make a decision on whether to proceed with a prosecution or not".

I have no idea whether Mr. James parents will be prosecuted. Frankly, I do not care. What I am interested in is the debate that is now raging in newspapers, magazines, and blogs such as this one. What I have been struck by is the overwhelming negative description of disabled bodies that appear in newspaper accounts. I have given up trying to count the number of times I have read "wheelchair-bound", ""wrecked body", "helplessly crippled", and other derogatory phrases. It is abundantly obvious that in Britain the disabled body is not valued and the lives of disabled people are considered markedly inferior. In fact, a common theme in some news reports are that death is preferable when compared to life with a disability. This enabled some to portray Mr. James parents as martyrs or saints. For example in the Herald Colette Douglas Home wrote a story entitled "Was Daniel's Death the Final Act of Parental Love?". She questioned how she would react if her son had a similar injury to Daniel James. "How would his father and I have coped if he'd been condemned to immobility at the peak of fitness?" Homes went on to to state that "sporting men of 23 are like unbroken colts. They are vital, forceful personalities; physical creatures with boundless energy. Their heads are filled with dreams and ambitions". At no point in my life have I ever felt "condemned" by my inability to walk or move my legs. The vitality that Homes describes has more to do with youthful enthusiasm than sporting life. Indeed, it appears as though only physically fit young men are capable of dreaming big and possess boundless energy. This outlook she assumes is beyond the ability and imagination of disabled people.

The most disturbing aspect of the news reports about Mr. James death is the idea that suicidal thoughts and disability go hand in hand. That is it is perfectly reasonable for disabled people to consider suicide. In fact, many reports I read characterized Mr. James attempts at suicide a "normal" reaction to spinal cord injury. For instance, Mr. James mother is quoted as postulating if one "had a son, daughter, father, mother, who could not walk, had no hand function, was incontinent, and relied on 24 hour care for every basic need and they had asked for her support what would they have done?" Placed in Mrs. James situation I would have been anguished yet suicide would not have been within my realm of choices for my son. Mr. James was injured just 18 months and was not terminally ill. He had everything to live for that any other 23 year old looks forward to who can walk. Again, this line of reasoning is based on the assumption death is preferable to life as a disabled person. Let's try changing the variables and see if thoughts of suicide are considered "normal": What if a child was clinically depressed, bipolar, or raped? Would suicide be considered an option? Not a chance, in fact the parents that suggest such a course of action would likely end up in jail.

Why is death preferable to disability? I have not a clue as to why this line of reasoning is so widely accepted. Perhaps it is easier and cheaper than insuring social services exist that enable disabled people to live a rich and full life. Death is after all a definitive "solution". What I keep returning to is not the discussion about the parents role in their son's death but the social failure that enabled it to take place. This social failure will not garner any headlines, prompt people to get into a fierce debate about quality of life issues, or make people turn on the TV news. The only way to change the social perception of disability and prevent other deaths such as Mr. James is for society to accept and incorporate disabled people into mainstream society. For that to happen, accessible and affordable homes and mass transportations must exist. Barriers to inclusion in the work force and in schools for disabled people must be stopped. In short, disability must become ordinary, a part of life for some but certainly not all. When I can leave my own front door and not worry about being accosted socially than I will know equality exists. Until all disabled people share that same sense of equality needless deaths like Mr. James will continue. This is nothing more and nothing less than a human rights issue. This is not sexy but the reality that I know, a knowledge based on dealing with disability based prejudice for the last thirty years.

McCain and Disability Policy

In recent posts I have referred to the blog Special Needs Truth 08. Although an obviously partisan site, the information and links provided are always interesting. I am in agreement with much of what I read at Special Needs Truth 08. The posts are direct and highlight the difference between what McCain says and what he actually does. Regardless of one's political viewpoint, I was stunned by the following post: McCain and Obama were invited to participate in a forum about disability in Athens, Ohio. Obama sent Kareem Dale, National Disability Vote Director to participate in the forum. Who did McCain send? No one, yes, you read that correctly, McCain sent no one! MCain did have Donna M. Jones, National Coordinator of the Americans with Disabilities for McCain Coalition, send an email. Special Needs Truth 08 quotes from Jones email:

"The McCain campaign does not have a vetted disability policy to release at this time. I also do not have any further information on when we might be releasing a platform discussing the senator's stance on issues that relate to people with disabilities. I understand that in this contentious political season, the needs of people with disabilities must be addressed as part of the policy conversation. It is my hope that we will be able to release a vetted policy from Senator McCain in the near future. That being said, I will not be able to send a surrogate to discuss a policy Senator McCain has not approved."

Even if I wanted to, I have no clue how to put a positive spin on the above statement. McCain has no vetted disability policy? This comes from the man whose running mate characterizes herself as an advocate for "special needs children"? How can one advocate for the needs of "special children" an disabled people in general if there is no disability policy? I did not need further reasons to know Obama is the clear choice for disabled voters. The total lack of a coherent disability policy only added to an already long list of reservations about McCain. But beyond my reservations I am increasingly convinced that there is a profound difference between what McCain says and reality. It is easy to say "I support special needs kids" or "Palin has a bond with special needs families". These are great sound bites but where is the substance and evidence these words will be turned into action? Now I know a plan for action does not exist. I did not state this, McCain's own people did! Gosh, don't you just love politics.

Life Worth Living for Second Class Citizens

Over the weekend I carefully followed news reports about Dan James. I doubt readers in America know who Dan James was or the circumstances that surround his death. Mr. James, 23 years old, was by all accounts a gifted British rugby prospect who expected to become a professional player. Mr. James' ambition to become a professional rugby player ended last March when he was paralyzed during a training session with the Nuneaton Rugby Club. Mr. James struggled to cope with his paralysis and attempted to commit suicide several times. Last month Mr. James persuaded his parents to bring him to Dignitas, a Swiss clinic founded by Ludwig Minelli. Dignitas is a non-profit clinic that takes advantage of "liberal" Swiss law to assist those that want to end their life. Mr. James died at Dignitas last month. His parents were the subject of an investigation. The results of the investigation have not been released.

Mr. James death is a social tragedy, a dark statement on how the life of those who are disabled are perceived. The media coverage in Britain is about what I would expect. The beginning point of every article emphasized two points: first, life is exceptionally difficult for paralyzed people. Second, over 100 Briton have sought to end their life at the Swiss clinic and this facts highlights the debate over the ethics of assisted suicide.

As for the difficulty associated with a life and disability, it is indeed hard. But what all the articles I read in British newspapers failed to acknowledge was the problems disabled people face are largely social. The overwhelming negative view of disability was simply a given, the starting point for a debate about how do you choose whose life is worth living. For instance, Mr James' parents only statement about the death of their son was that "it was an extremely sad loss for his family, friends and all those that care for him but no doubt a welcome relief from the prison he felt his body had become and the day-to-day fear and loathing of his living existence". They went on to state that their son "was not prepared to live a second class existence". Where, I want to know, did this self hatred emerge? I also want to know why is it a given that people with disabilities are "second class citizens"? While no one wants to be paralyzed, myself included, I find it hard to fathom why Mr. James could not move on with life. Perhaps he took to heart the notion that paralysis leads to a grim life, one that does not include a family, sex, and athletic achievement. Perhaps he accepted the views of Libby Purves who wants to place the blame on the disability rights movement. In an article entitled "Its Time for a Clear Policy on Euthanasia" (Timesonline, October 20) Ms. Purves suggested a "side effect" of disability rights vocabulary was that "It may blind us to the utter visceral awfulness of confronting a major disability, especially when young. As civilized people we do not allow ourselves to flinch at a half-wrecked body in a wheelchair, yet the flinch and the fear are still there inside". Ms. Purves may be right, perhaps simple minded people will indeed flinch but civilized beings will reject such a primal or thoughtless response. But enlightenment is not within Ms. Purves realm as she goes on to write "we should not prattle about fulfilling lives. Paralympians, Stephen Hawking and the rest if it makes us belittle the terror and self-disgust of a fit young person, paralyzed. No amount of pious writing about the Disability Community should blind us to that". Yikes, these words are sobering to me. If this is an indication of what people think the disability rights community has made little if any progress.

As for the debate about assisted suicide, I do not want to enter that discussion on the defensive nor do I want to see Mr. James death used by those who support or oppose assisted suicide. This sort of debate misses the point and enables people such as Edward Turner, an advocate for "assisted dying" whose mother ended her life at Dignitas, to argue Mr. James death "breaks new ground". From my viewpoint, the only new ground broken was at Mr. James grave. Disability based bigotry has been present for decades and has crushed the lives, hopes, dreams, and ambitions of an unknown number of people. If Mr. James is to be made out to be a victim it is a victimhood that is directly related to the innate prejudice against disabled people. I for one do not want to listen to Mr. Turner's distinction between "assisted dying" and "assisted suicide". That debate has nothing to do with Mr. James, the difference between depression and terminal illness or end of life issues. The fact is Mr. James would be alive today if the stigma associated with disability was forcefully rejected by all people instead of accepted as a societal norm. Thus the assisted suicide debate in this case is a smoke screen for the real problem Mr, James, myself, and other disabled people encounter. Sadly, the issue of disability rights will most likely be totally ignored in Britain and headlines will focus on the sensational aspects of Mr. James death. This is particularly unfortunate as I thought great progress in disability rights has taken place in Britain.