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Thursday, December 11, 2008

Piss on Pity

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

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

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

Wednesday, December 10, 2008

Daniel James Parents: No Criminal Charges

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

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

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

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

"It was my duty to help him die".

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

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

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

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

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

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

Tuesday, December 9, 2008

Pity and Unemployment: The Hidden Agenda

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

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

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

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