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02/11/2013

Euthanasia in Belgium: The Untold Story

Belgian twins, Eddie and Marc Verbessem, were euthanized by lethal injection at Brussels University Hospital in Jette in December. The Verbessem brothers, deaf since birth, were cobblers by trade who lived and worked together their entire lives. Several years ago they were diagnosed with a genetic form of glaucoma that would render them blind. The brothers feared dependency and believed being deaf-blind would cause them to experience “unbearable suffering.”

Under Belgian law euthanasia is permitted if a person is able to make his or her intensions clear to others and a physician determines that the person is experiencing “unbearable pain.” The Verbessem case has generated controversy worldwide. Multiple news reports characterized the deaths as a mercy killing. The message was clear: death is a logical and reasonable option if a person will become deaf-blind. By logical extension there are some disabilities that are a fate worse than death. One does not need to be terminally ill to be euthanized.

When I first read about the Verbessem brothers’ euthanasia I was struck that not a single news story contained a comment by a person who is deaf-blind. Deaf-blind people were outraged, as was the wider disability rights community. The media has utterly and completely rejected a disability rights perspective in favor of simplifying a story that is in fact quite complex.

For one thing, the Verbessem euthanasia highlights an unpleasant truth too many ignore: social supports for people with a disability in general and for the deaf-blind in particular are woefully inadequate.  Depression, social isolation and unemployment among the deaf-blind is rampant. Technology is available that would empower the deaf-blind to lead independent lives. This technology is expensive and governments worldwide do not want to spend limited resources on people whose lives are not valued. This is the harsh reality virtually every person with a disability faces as global second-class citizens.

Proponents of assisted suicide and euthanasia are pointing to the Verbessem brothers’ deaths as justification for ending the lives of people who are “suffering.”  For instance, in Belgium, the Socialist Party has presented parliament with dramatic changes that would legalize euthanasia for specific conditions. The proposed legislation would allow minors and Alzheimer’s disease patients the right to die. Death for children would only be extended to minors if they are capable of “discernment or affected by an incurable illness or suffering we cannot alleviate.”

Stephen Drake, research analyst for Not Dead Yet, has characterized the use of the word suffering rather than pain as a bait-and-switch tactic utilized by proponents of assisted suicide legislation. Pain is not the primary reason people seek out assisted suicide. Statistics in Oregon, where assisted suicide has been legal since 1998, demonstrate that people who utilized the Death with Dignity Act did not end their lives because they were in pain. People ended their lives because they lost their autonomy, the ability to participate in activities that made life enjoyable, and because they felt a loss of dignity. Between 1998 and 2010 only 22  percent of people cited pain as the primary reason for seeking assisted suicide.

I am not suggesting that people at the end of their lives and those with  terminal conditions do not suffer or experience pain. However physical pain can be alleviated in most cases. Suffering is far more subjective — what exactly qualifies as suffering? It is not uncommon for people to associate disability with pain, suffering and end-of-life issues. I contend that fear and a deeply ingrained bias against disability are primary variables in assisted suicide.

Do not be misled by those who use the Universal Declaration on Human Rights to argue assisted suicide is about free choice and self-determination (the right to life, liberty, and security of person). This line of reasoning conveniently ignores the gross lack of social supports that disability activists have fought for here and abroad. No one wants to discuss the practical options the Verbessem brothers had. I saw no discussion about how many independent skill centers are devoted to the deaf-blind. In fact, I can think of only two such centers in North America.

Disability in the most general sense of the term is hopelessly misunderstood. Helen Keller is lauded for her supposed heroic ability to “overcome” her disability. This legacy of individual triumph over personal adversity is a historical travesty. Keller was an ardent socialist and a routinely generated controversy with statements such as the following: “I had once believed that we are all masters of our fate – that we could mold 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 was spot on about the importance of power. The Verbessem brothers were disempowered. When the lack of power is coupled with a country that embraces assisted suicide and seeks to legislate euthanasia the consequences can be deadly. I am concerned that the Verbesssem brothers’ euthanasia is a harbinger of the future. However, I take comfort in the fact there are deaf-blind people who will not be silent. For instance Coco Roschaert, a blind-deaf writer, wrote that what “the Deafblind community of the world can do is rise up, unite, EDUCATE the world of our abilities, FIGHT for our right to a better quality of life, CHANGE laws, society rules and our mindset about how we should live. The world needs to stop pitying us, spoon feeding us, patting us on the head and whispering behind our backs that our live is destined to be a big nothing because of dear, we can’t hear or see.”

William J. Peace is an independent scholar. His research interests include disability rights, bioethics, body art and modification, and the history of anthropology. His blog is Bad Cripple.

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