Why one Disabled Woman Opposes Euthanasia

Guest post by Kathleen Downes

This post is terribly difficult to write. But the conversation needs to happen.

One of the most significant threats to people with disabilities in North America is the belief that our lives are just not worth living. It’s a belief that permeates the media, sneaks into casual conversation with a flippant “I’d rather die than be in a wheelchair” and moves stealthily into our culture tucked neatly beneath the cloak of mercy. It’s a belief that declares bodies “broken”, bodies deviant, and people confined.

It is a belief that relies heavily on assumptions about the quality of a life like mine, and a belief that is rarely questioned. My wheelchair is routinely treated in popular culture as worse than death by people who have not lived in it or considered that just like any other life, mine has moments of great struggle and moments of great joy. That isn’t the nature of life in a wheelchair. That is the nature of life.

An image of Kathleen Downes
An image of Kathleen Downes

This being said, I was devastated to open up the newspaper and read the story of 32-year-old Tim Bowers, who sustained a severe spinal cord injury a few weeks ago that would have left him a quadriplegic. Just one day after the accident, Mr. Bowers was allowed to remove life support and die after learning of his diagnosis.

One day. Where was the counseling? Where was the opportunity to talk to another person with a severe disability? Where was the chance to explore his options, and learn about his “new normal?” I understand that traumatic injuries are devastating, but it is natural to feel despondent just one day after the accident.

I believe with my whole heart that had a non-disabled person been feeling suicidal, the health care system would quickly suggest counseling, quickly take anti-suicide measures. But Mr. Bowers was allowed to determine the value of his new life on the spot. Nobody questioned the hasty assumptions, the hegemonic model of a disabled life as a terrible one. That should scare you.

I am not minimizing the life-altering quality of sudden disability, but it is disturbing how quickly the newly disabled are presented with a bleak picture, made to feel like a burden, and never given a chance to consider that life in a wheelchair does not have to mean the end of a valuable life.

The problem in society is that it carelessly allows people to believe that it is the end, no questions asked. The “no one would blame you if you want to die” attitude says “Yeah, I don’t see the value of your life either” and people with disabilities can extinguish their lives unchallenged. We believe what we are taught, and we are taught to expect empty lives when we become disabled. I do not feel angry at Bowers for his choice, but I do feel angry at the world he lived in for making him feel like that choice was only natural.

Legal reasons why euthanasia cannot be safely controlled.  

It makes me weep that the world he lived in, the same one that I call home, engrained in him so deeply that a life in a wheelchair wasn’t worth it that he would rather die than face it. Tim Bowers was a young husband, a soon to be father. The world told him that he wouldn’t ever hold that baby, and made him feel that a wheelchair would make him less of a father.

I wish I could have told him that holding a baby does not make you a father. I wish I could have told them that I too may never be able to hold a baby on my own, but I still dream of my future child, knowing that it is love, not motor skills that make a parent.

Stella Young, comedienne and disabled rights advocate
A lighter touch: Stella Young, Aussie disabled rights advocate who uses comedy to make her point

I wish he had been given time to realize that the world still needed him. Where are the cries of “it gets better” for people with disabilities, the reminders that support is out there? Where are the reassurances that it’s okay to ask for help?

Aside from a few whispers from the disability rights community, they are not here, and society quietly, unequivocally agrees that no, our lives cannot possibly be fulfilling, and remains unwilling to answer the above questions, perhaps due to the shame that we haven’t bothered to come up with any good answers.

Perhaps if we invested the time in creative support systems that we invest in negative media portrayals of people with disabilities, Tim Bowers would have made a different choice. Perhaps if we found time to go above basic standards for access, Tim Bowers would have woken up knowing that the world he lived in would find a place for him.

Perhaps if people like Tim, and myself, were more frequently measured by their human potential instead of their financial “cost”, he would have thought to himself, I will be okay, because the world will embrace me. Instead, I sit here and grieve for him, and the attitudes that made him too fearful to carry on when his circumstances changed.

I hope that one day there will be no more stories like this, because we will know how much we are loved and valued no matter what our physical abilities may be. That we will not have to be afraid of how others will see us once we become disabled. That we will go forward knowing that we are entitled to a valuable existence. And no one will be hastily allowed to die because no one gave him or her a chance to learn how to live again.

Many thanks to Kathleen Downes for this excellent post. You can read more at The Squeaky Wheelchair.

To read about Tom Mortier’s mother, the Belgian woman who asked to be euthanized for depression, click here.

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Book Review: Five Days at Memorial

New Orleans during Hurricane Katrina, 2005

Five Days at Memorial:

On Sunday August 28, 2005, Hurricane Katrina was whorling its way toward New Orleans. At 10 o’clock that morning, mayor Ray Nagin gave evacuation orders. All routes of egress became clogged and those left in the city battened down the hatches in anticipation of a category five assault. Residents were told to bring axes with them to their attics so they could hack their way to their rooftops. Hurricane Betsy, in 1965, had taught them not to underestimate the perils of coastal flood waters.

Five-Days-at-Memorial-by-Sheri-FinkAt Memorial Hospital, situated in the city’s basin, working staff brought along their families and pets. The hospital building was considered a safe refuge and many residents in attendance had sought shelter there before. Hampers of food, changes of clothes and other supplies were safely stowed while staff got on with the job of caring for patients and family members hunkered down for what was expected to be one of the worst storms of the century.

Sheri Fink’s account of everything that went wrong at Memorial is densely layered and elaborate. At the centre is the story of Dr. Anna Pou, a head and neck surgeon who, along with two nurses, allegedly hastened the deaths of at least 18 critically ill patients just as helicopters were arriving and hospital staff were undertaking a final evacuation.

Ten days later, when relief workers entered the empty hospital, a total of 45 corpses were discovered, a number that got the attention of the state attorney’s office. Thus began the arduous task of recreating events leading up to the gruesome discovery.

What Fink’s account doesn’t reveal is the sheer enormity of the task she must have faced piecing together witness accounts to form a narrative so rich in detail. Hints are there in Pou’s prevarications in the aftermath of the crisis. In a way that will be familiar to those who have experienced medical malfeasance, information, via Pou’s lawyer, was fed to investigators and the media via the drip method, leaving onlookers and those seeking justice to fill in substantial gaps.

Dr. Anna Pou
Dr. Anna Pou

Fink fills those gaps and does so superbly. Her diligence has produced a backstory that casts doubt not only on the preparedness of the hospital and state and federal governments, but also on a legal system pliable enough to convince jurors and even prosecutors to ignore overwhelming evidence pointing to a defendant’s guilt. That evidence included high concentrations of morphine and the sedative midazolam found in the organs of many of the dead, including the organs of one victim who was not critically ill. He had enjoyed his breakfast the morning of his death and had poignantly asked a nurse to make sure he was not left behind. He was Emmett Everett, a 61 year-old paraplegic and doting grandfather.

To date Pou has never openly admitted she had a hand in the four deaths that were eventually deemed homicides. Instead she has conspicuously relied on her supporters, her silence and her religious faith to shape the public’s perception of her. Since this is Louisiana, and Pou is known as a “southern lady,” her strategy has worked and she has never been indicted.

Infrastructure problems aside, the choices made by Pou and her two nurse assistants are hard to understand, particularly when adequate stores of drugs, food and water were found in the hospital by relief workers. Moreover, one wing of the hospital — the cancer ward — was still operational; its generator had not quit. No patients were moved to that wing during the crisis, but staff took breaks there, watching television, heating meals and reclining in armchairs designed for chemo patients. If there were enough supplies and part of the building had back-up power, why were these patients killed? And it’s obvious they were because as one investigator points out, having numerous patients die in a span of three and a half hours points to something other than coincidence.

Dr. Sheri Fink
Dr. Sheri Fink

That there were no legal consequences speaks to the prevailing forces that were at work in New Orleans after the crisis, forces that deflected blame away from the centre and toward the margins of a larger controversy that, like Katrina itself, seemed shaped by unpredictable gusts of power. Those powers were the American Medical Association, which stood behind Pou, the anger of Louisiana’s citizens, who felt abandoned by their governments, and the spectre of corporate greed manifest in the poor response times of both Lifecare and Tenet, the healthcare giants that ran Memorial.

Combined, these forces upended fundamental notions of justice itself: a grand jury that dismissed charges, despite knowing “a crime had been committed,” is an aberration and deserves our attention, particularly at a time when offing the elderly, via legalized euthanasia, seems to be the answer to many politicians’ budgetary prayers.

Five days at Memorial is a cautionary tale about the dangers of uncontested authority and the vulnerabilities of the weakest and most needful among us. 

Taken from 25 Haunting photographs of Hurricane Katrina: http://goo.gl/aymzn

Author’s bio: Irene Ogrizek teaches English at Dawson College in Montreal, Canada. Previous to that, she was cross-appointed in both English and Humanities at Vanier College, also in Montreal. In her 20s, she worked in the airline industry, both in Canada and abroad, spending two years living and working in countries in the Persian Gulf. Later, she worked on contract for both the Canadian Environmental Law Association and Canada’s International Centre for Human Rights and Democratic Development, led by Ed Broadbent.

New Orleans photos can be found at 25 Haunting Photos of Hurricane Katrina.

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