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Saturday, January 19, 2013

Belgian Suicide: Marc and Eddy Verbessem

Stephen Drake at Not Dead Yet has published two blog posts about the suicide of Marc and Eddy Verbessem. Assisted suicide has been legal in Belgium since 2002. The Belgium Act on Euthanasia as I understand it requires a person seeking assisted suicide must be  in a "medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, resulting from an incurable disorder caused by illness or accident". As Drake has pointed out, media reports are hardly comprehensive and the exact circumstances of the assisted suicide has not yet been made clear.  I doubt the Verbessem brothers qualified for assisted suicide. While many interested in this unusual case will focus on the legal implications, I am far more interested in the cultural ramifications. The implied message the Verbessem assisted suicide is not hard to assess: death is preferable to life as a blind deaf person.  This line of logic is not uncommon when disability of any sort enters the equation.  Long ago it was widely accepted that a person that experienced a cervical spinal cord injury could not have an acceptable quality of life. This as most readers would agree is simply wrong. The same can be said of the decision that led to the suicide of the Verbessem's. The National Federation of the Blind President,  Dr. Marc Maurer released the following power statement:

 This disturbing news from Belgium is a stark example of the common, and in this case tragic, misunderstanding of disability and its consequences.  Adjustment to any disability is difficult, and deaf-blind people face their own particular challenges, but from at least the time of Helen Keller it has been known that these challenges can be met, and the technology and services available today have vastly improved prospects for the deaf-blind and others with disabilities.  That these men wanted to die is tragic; that the state sanctioned and aided their suicide is frightening. 

Frightening is apt. The Verbessem's were not unique. Many people who are blind and deaf live long productive lives. The only thing that makes the Verbessem's unusual or unique, is the way they died. Many news reports I read used the word "mercy" to describe the assisted suicide. Based on comments I read that accompanied news stories, many will perceive this to be a perfect example of a mercy killing. Hundreds of stories have been published in the last few days. Not a single story I could find included a quote from a person that is blind and deaf. Not one. To me this is a perfect example of disenfranchisement. It also illustrates how badly disability is understood. This is hardly a new phenomenon. Children are taught about Helen Keller. The film the Miracle Worker is considered a classic. Most know about Keller's supposed heroic ability to adapt to her disability. Precious few people know Hellen Keller was an ardent socialist. She wrote:

I had once believed that we are all masters of our fate - that we could mould our lives into any form we pleased... But as I went more and more about the country I learned that I had spoken with assurance on a subject I knew little about. I forgot that I owed my success partly to the advantages of my birth and environment. Now, however, I learned that the power to rise in the world is not within the reach of everyone.

Keller is spot on about power or the lack of power. The wider lesson associated with the Verbessem assisted suicide is we live in a society that dis-empowers people with a disability. We are too often set up to fail because adequate social supports are absent. Couple this with rampant disability based discrimination and the consequences can be deadly, particularly in a county such as Belgium that enthusiastically embraces assisted suicide. Perhaps this case is a harbinger of the future in the United States if assisted suicide is widely accepted. A grim thought.

Wednesday, January 16, 2013

Charity, Tragic Models of Disability

This ad is striking to me. It reminds me of the 1990s. More specifically it reminds me of 1995 when Christopher Reeve sustained a spinal cord injury. Suddenly spinal cord injury was news worthy. Reeve was the perfect man to put a face on spinal cord injury. When people thought about Reeve the thinking was very specific--Reeve took on the part of tragically crippled man. He played this part to absolute perfection. He used a large power wheelchair and was a vent dependent quadriplegic. This image, tall vibrant man paralyzed, could not be any better. Better yet, Reeve was well liked in Hollywood, had connected friends such as Robin Williams, a beautiful wife, and children. The more perfect he was the more tragic his injury became. Reeve oozed sincerity and dignity. The mainstream media gushed about Reeve's courage and will power. Reeve had a single interest--cure for spinal cord injury. He created a multimillion dollar foundation in his name devoted to cure and cure alone. Over night Reeve became the go to guy when anything tangentially associated with spinal cord injury was discussed in the mainstream media. He essentially cornered the market on spinal cord injury with his single minded dedication to a very narrow and specific focus--cure. This single minded quest fit perfectly with the cultural perception of disability. Disability is bad and all people with a disability want to be cured.

For quite sometime I refused to comment about Reeve. I readily admit I silently seethed in anger. No one could be so deluded or selfish I told myself. Reeve at some point will get it. Reeve never got it. To me this is the real tragedy associated with Reeve. He was a singularly destructive force in terms of disability rights. Reeve never grasped the most important aspect of disability: disability is a social malady. Disability is at its very core a civil rights issue for all people with a cognitive or physical deficit. The problem is not our unique physiology but society's refusal to negotiate our difference. Reeve never embraced nor understood disability rights. Instead he embraced the role of tragically crippled man. More than once he stated he was not interested in wheelchairs, ramps, elevators, etc. He believed he was different. Unlike others with an identical injury, Reeve was fawned over. In distancing himself from the social aspects of disability he embraced a medical model of disability with a twist. He wanted to be cured and had no interest in anything else but a cure. Rehabilitation? No thanks, I want to be cured. He created what I call the Christopher Reeve School of Paralysis that has adversely affected the lives of people that experience a spinal cord injury. Rehabilitation after a spinal cord injury is cursory today. A new outlook has emerged. Get them in and get them out ASAP. The fact newly injured people are ill prepared to care for themselves or have an appropriate wheelchair or wheelchair cushion is not relevant. People who experience a spinal cord injury live in limbo--a liminal state. They are paralyzed for sure but are now willing to wait until a cure is found. Thus the focus becomes maintaining their body for the glorious day when they can walk again. This mind set enables the cure industry to gets its hooks into people totally unfamiliar with disability. Enter silly and unproven devices such as the exoskeleton used at rehabilitation centers.  Rehabilitation centers once empowered people with a disability now they set people up to fail. Long ago, rehabilitation was about one thing--maintaining your independence and learning how to care for a paralyzed body. This was hard work and boring. The profit margin was nonexistent. Rehabilitations stays were prolonged, months. Medically this likely was not necessary however it awarded newly paralyzed people time to adjust physically, mentally and socially to their new status. In looking back extended rehabilitation was akin to living in a halfway house. It gave structure and a safety net. Through trial and error one adjusted. This is all gone.

The above thoughts were prompted by the terrible video clip above. Reeve's legacy lives on. This ad is a classic example of how such demeaning tactics to raise money work.  I simply wish such videos were a thing of the past; a period piece in which we shake our collective heads and wonder what was I thinking. So I wonder and worry. What sort of life lessons are paralyzed people being taught today. Will we create people like Christina Symanski who died a slow agonizing death via starvation and dehydration? Will people stop living and instead wait for a cure that is not likely to come in their life time?  Gloomy thought on a lovely snowy morning in New York.