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Thursday, June 18, 2015

Assisted Suicide and the Unarticulated Dangers

I am adamantly opposed to the legalization of assisted suicide. Opposing assisted suicide is not an easy fight. Groups such as Compassion and Choices dominate the mainstream media on end of life issues. Add in far too many Americans die badly and tragic stories about end of life abound (think Brittany Maynard) and the discussion about assisted suicide is highly emotional an often devoid of reason and logic. This is purposeful--gripping emotional stories sell news papers and generate television ratings. Fever pitch emotional responses to stories also enable people to avoid discussing the complexities associated with death. No one wants to talk about their inevitable death. A serious and sober discussion about the circumstances associated with one's death is very hard but necessary. I would suggest end of life should be an ongoing discussion held increasingly often as people age. The vast majority of people do not do this.

I have been thinking a lot about end of life issues. The viewpoint of the disability community in the broadest sense of the term is acknowledged by the medical establishment. Are our concerns taken seriously? I do not think so. I think many in the medical community scoff at us when a person such as myself states I fear hospitalization and health care providers. Dismissing the concerns of people with a disability is easy to do when one has been firmly in control of their personal and professional life. It is also easy to dismiss the stigma that disability generates and perceive people strictly within a medical model of disability. Health care professionals work in the hard sciences and deal with facts--how could bias exist? Oh, how bias, deadly bias, exists. I experienced this first hand in 2010 when a hospitalist vaguely suggested I need not take powerful life saving antibiotics and instead let nature takes its course. He added that I could be made very comfortable. Link: This suggestion was made in the middle of the night while I was vomiting.

The memory of that night came roaring back yesterday when I read a deeply moving and disturbing post at an outstanding blog--Star in Her Eye maintained by Healther Kirn Lanier. Read about her at: More importantly read her blog Star in Her Eye. Link: Star in her Eye is about Kirn Lanier's daughter Fiona who has "Wolf-Hirschhorn Syndrome". The love in Kirn Lanier's heart for her daughter leaps off the page. She is "mothering a special girl" and is an eloquent writer. Reading her blog though is tough stuff. The bias she has experienced raising her daughter--bias on the part of health care professionals charged with caring for her daughter Fiona--is gut wrenching. Her posts have left me laughing, angry, and enlightened. If you are looking for inspiration you will find it in Kirn Lanier's efforts to raise her daughter Fiona. I am not referring to so called "inspiration porn", that is utterly absent in all her posts.   Her blog is inspiring because she and her husband are raising her daughter in a way I deeply admire. In fact she and her husband remind me of my parents who, for over a decade of one medical crisis after another, fought to empower me so that I could get everything out of an atypical body.

Not all physicians share Kirn Lanier's goal. A recent post entitled "The Neurologist" sent a chill all the way down my spine (actually the chill went to down to T-3 and dissipated). Link: What should have been an ordinary check up and discussion of a seizure medication with a neurologist turned into an offer to euthanize Fiona. The tightly written post should be read in its entirety in order to grasp the nuances that unfolded with the "thin, long, seventy-something-year-old face [that] stayed neutral".  Think ordinary physician with decades of experience likely beloved by all. Clearly this man could not be perceived as a bigot or biased. The mere suggestion would be insulting and outrageous. After the neurologist told a tragic story to Kirn Lanier and her husband (Fiona was present as well) and temporarily left the room she recalled:

"What!" I said, shocked. "How did we get from seizure meds to euthanasia?"
"No idea," my husband said. "Now I wanna see where this thing is going."
I laughed, but it was a laugh stemming from the urge to cry, or an urge to do something beyond crying, which did not exist in my body, and so I laughed.

Kirn Lanier went on to write:

I wanted to shake my head so hard my cheeks would slap against my gums and afterward I'd find myself in a different doctor's office, where a different doctor didn't bring up the killing of disabled people, where a different doctor didn't liken my reluctance of a drug to an inquiry about killing one's kid...

What angered me after the neurologist's office that day, which happened maybe a year ago but hasn't left me yet: I'd venture to say very few parents of able-bodied kids have had to suffer through a doctor's story about euthanizing kids like their own. I'd venture to say most parents of able-bodied kids don't have any of their doctors bring up the legal and ethical question, "Should kids similar to your kid be killed?"

In the parking lot Kirn Lanier and her husband decided to never return to the neurologist. I admire this decisive decision. I saw my parents do the same with my input as a kid. The key word in the quotes above is suffer. When I read about Fiona and other children and adults with a disability I do not think these people have a life dominated by suffering. Is life with a disability easy? Of course not. Would most people prefer to live without a disability? Likely yes, and as I joke with friends, I cannot recommend paralysis. But suffer? No. Perhaps we people with disability suffer differently than others with a typical non disabled body. Yet, suffer? That is very far down my list when I contemplate my life. However, disability and suffering, for some health care professionals, cannot be separated and go hand in hand. What some medical professionals see is pathology. They see all that cannot not be done when compared to an ordinary body. In this comparison test people with a disability will always fail. Far too few people see what a person with a bodily or cognitive deficit can do. Disability in the broadest sense of the term give and takes. Positives and negatives exist. Oh, how I love to ski or bike or kayak. I love the rhythm of pushing my wheelchair up hill and once at the crest cruise down and feel the wind in my face. Is this any different from what bipedal people experience? I think not.

Suffering enters my life when I meet people who think death is preferable to a life with a disability. These people, like the neurologist that Kirn Lanier spoke with, people that accost me, utilitarian philosophers all think disability and suffering are tied together like two peas in a pod. This assumption scares me to my very core. I read Kirn Lanier's post and realize fear is a healthy emotion. Indeed, my fear could save my life when accessing helath care. I fear the medical professional who is so kind and all knowing that out of the goodness of his/her soul will end my suffering. I often shake my head in wonder that so many people do not get disability. I do not understand why people are in a rush to die and avoid losing control over death. The likelihood we will be in total control over our death is a rarity, not the norm. People do not die in physical pain thanks to significant advances in medical care. So why is assisted suicide often in the news and why are such laws being passed? In my opinion people that support and vote for such legislation have not put much thought into the issue beyond control over your death is common sense.  Another variable is many people enjoy decades of good health and lack experience in a health care setting. This is why people with a disability voices, narratives if you will, are so important. We routinely interact with health care professionals. Most of us have seen the very best that medical care has to offer and some of the worst. We people with a disability are seasoned veterans in terms of health care. Hence rather than have our concerns dismissed we should hold a central place in the discussions about end of life issues. The fact is if you live long enough it is highly likely you will acquire a disability. That disability need not be feared. It is a part of life. Disability has in some ways enhanced my life in that is has insured I lead a different life. I have learned so much from encountering disability based bigotry. I am far stronger person, more sure of myself, and willing to advocate for all others who are disenfranchised.  Like I noted, disability gives and takes. Given this what we need is not assisted suicide legislation but the amelioration of disability based push for death. No parents, especially parents like Kirn Lanier and her husband, should be subjected to a doctor that suggests euthanasia for a child with a non terminal condition; and more selfishly nor should I.

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