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Friday, September 9, 2016

Pity, Inspiration Porn and Assisted Suicide

Those interested in adaptive sports are having a wonderful time. The Paralympics are underway and I for one have enjoyed the hard to find media coverage. As expected, the coverage is severely limited. Mainstream media coverage of the Paralympics is routinely terrible. This year is no exception and worse than usual. In part I blame this on the following commercial.

The visuals in the commercial are powerful. Multiple athletic bodies are featured. However the idea of "super heroes" and the phrase "yes I can" have unfortunate and unintended consequences. Inspiration porn is an ongoing problem whenever the Paralympics are televised or discussed. The same can be said of adaptive sports in general. Typical people often deem Paralympians inspirational. Paralympian's as super heroes make your average crippled person look bad. The assumption is if a Paralympian can compete at such a level of excellence than other cripples are simply lazy and content to sponge off the largesse of society. You see "everyone is kind to the handicapped" and people tell me "it is good to see you out". We cripples are cleaved off from routine social interaction. We are poor. We are typically uneducated. We are largely absent from the work force. Accessible housing is grossly inadequate. Accessing health care is inherently problematic. Mass transportation is largely inaccessible. Paratransit systems nationwide offer substandard service. My crippled peers are well aware of these problems as they negatively impact us on a daily basis.

In terms of minority representation, we cripples are largely absent. In the rare event we emerge from our isolated existence, we are used to make others, typical others, feel better about themselves. At the opening ceremonies the person carrying the torch, Marcia Marsar, awkwardly fell. Like most people that fall, she got up. It was an embarrassing moment for sure. No one wants to fall while on an international stage. Instead of letting the moment pass the official Paralympic social media outlet tweeted "What defines us is how well we rise after falling". Worse, a three second clip of Malsar was titled "Never give up!"and on Facebook it was described as "a magical moment". Sam de Leve, an athlete and dancer, brilliantly deconstructed this moment. See: If your average Olympian fell snide comments would likely be made and no one would not consider such a gaffe to be a "magical moment".  de Leve is spot on when she notes that mainstream media outlets have doubled down on inspiration porn at the Paralympics this year.

So when people say that they found Marcia Malsar inspirational, I have to wonder: what did it inspire them to do? What about the experience was so exceptional? Of course she got up after she fell—that’s what people do. It’s not brave, it’s perfectly ordinary. Real people don’t just lie there as millions watch on international television. Could you imagine yourself doing that in her situation? Really? Of all the things that make Malsar special, all the accomplishments and history that brought her to that torch, the mundane human act of getting up after a spill is least among them. She deserves more than the objectification she’s received from international journalists and social media.
Objectification: For crippled people we can never be ordinary. We are symbols used by typical others to reinforce what they think they know about disability. The fact that most typical others know virtually nothing about what it means to live life with a disability is conveniently overlooked. Typical others think our life is ever so hard. Life with a disability is indeed hard. It is hard because the social and constructed environment is hostile to our presence. This discussion makes bipeds uneasy for they would be forced to acknowledge the civil rights of people with a disability are routinely violated. Amidst the inspiration, one figure has stood out to date for all the wrong reasons. Every major news outlet is reporting about Marieke Vervoot. Vervoot is from Belgum and in the past has won gold and silver medals. She has stated she will retire after the Paralympics and is considering euthanasia. Multiple mainstream news outlets have published the following quote: Rio is my last wish. I train very hard day and night against my disease... Everyone sees me laugh with my gold medal but no one sees the dark side. I suffer greatly, sometimes sleeping only ten minutes a night and still go for gold". These words are incredibly damaging. They have been repeated again and again. They have also been uncritically accepted. The assumption is that life with a disability is filled with pain and our lives are inherently less. This message is impossible to ignore. It is an unrelenting given.

Today Liz Carr wrote "Legalizing Assisted Dying his Dangerous for Disabled People" in the UK newspaper Guardian. Her article began:

If I said I wanted to die, the press, celebrities and the public would support my choice, seeing it as rational and understandable. Hell, they would probably set up a go-fund-me campaign to help me make it happen.Yet when a healthy, non-disabled person wants to kill themself it’s seen as a tragedy, and support and prevention tools are provided. If nothing else convinces me that to legalise assisted suicide is not a safe option for many of us then this does. Suicide is not seen as socially desirable – so why is assisted suicide seen as compassionate when it’s for ill or disabled people?Marieke Vervoort, the 38-year-old Belgian Paralympian gold medallist, is only the most recent disabled person to announce that she is considering euthanasia, saying her “body is exhausted”. She is not imminently dying. Yet no one seems to be trying to persuade her that life is worthwhile. Would Usain Bolt be met with the same reaction if he announced his decision to end it all after his last Olympics?

In the Netherlands euthanasia is legal for those who are experiencing "unbearable suffering". In Canada, the most recent country to legalize assisted suicide, the law states a person can die if they have a "serious and incurable illness, disease, or disability". If I were Canadian I would qualify for assisted suicide. I have an incurable and serious disease. I have a significant disability. I am in significant pain on a regular basis. People I do not know would encourage me to die. This is not unusual. Any person with a disability that expresses a desire to die receives overwhelming support. Even children with a disability that express a desire to die get support. Jerika Bolen is the most recent such case that many people with a disability find outrageous. Back to Carr:

There is a fine line between those who are terminally ill and those who are disabled in public perception and the emotional power behind the campaign for assisted suicide is based on misplaced pity. Rather than telling us we have everything to live for – and we do – we are helped to the proverbial cliff edge and offered a push.

Reading Carr's words reminded me of one of my favorite cartoons:

Disability is part of millions of people's life. Disability is ever present. Disability will never be eradicated. I am okay with that. Indeed, there is much to gain when disability becomes part of life. Deaf people speak of deaf gain. I think we need to start thinking about disability gain. We need to do something, anything, to undermine the fact that when disability exists a worst case dooms day scenario is imagined. Doctors frequently and persistently portray a grim future for life post disability. The refrain "sorry there is nothing more that can be done" is in reality stating "sorry but your life is over". This is wildly wrong and destructive. Life with a disability is not predetermined  misery. The only misery I experience is rampant ableism. Those that imagine my life is unbearable are not clairvoyant. No one wants us to exist. I am unwanted. All cripples are unwanted. I am particularly unwanted because I refuse to be silent. I push back. I voice what others are unwilling to say. Last week I told a roomful of people at Syracuse University that the multimillion dollar promenade project was a symbolic fuck you to every person that uses a wheelchair. My words hurt good people. My words were truthful. For speaking the truth, for asserting one's rights, are the only way to change the world and make it a more inclusive place for all. This does not make me a popular man. Others like me that advocate for disability rights are equally unpopular. Based on the flow of hate mail that makes its way into my email in box I am decidedly unpopular. That's fine with me. You see I have no interest in dying. I have a passion for living.

Wednesday, September 7, 2016

Jerika Bolen: Hard Questions Being Asked

I have addressed the Jerika Bolen case more than once here at Bad Cripple. Readers will recall the case. Jerika Bolen is a 14 year old with SMA type two. She has explicitly stated she wants to die. Last month she had her "last dance" which received a great deal of press. Since her last dance, she has been completely out of the news. No follow up stories have been published in mainstream media outlets. I assume the mainstream press is waiting for Ms. Bolen to die. Her death has been scripted. This makes me shudder. The mainstream press loves this story. Plucky terminally ill child states she has had enough. She is in pain all the time. Her quality of life is unacceptable. She does not want machines to breathe for her. Oh the heart break. This rhetoric sells newspapers, generates high television ratings, and is the wildly effective click bait (paging the

The problem with the above story is that it makes no sense. Many people with the exact same condition as Ms. Bolen lead rich and full lives. Most live well past their teens and many live into middle age. Most do not experience the type of pain Ms. Bolen describes nor do they have over 35 surgeries as has been reported by various news outlets. SMA type two is not necessarily a fatal or terminal condition. Could Ms. Bolen truly be terminal will? Yes, this is a possibility. It is also equally likely she could live many more years if not more decades. The only person that can answer these questions are her physicians and mother. They are not speaking to the press. In this void, some people are asking the hard questions the mainstream press has not thought of much less asked. Carrie Ann Lucas, executive director of Colorado based Disabled Parents Rights, is asking child protection services to investigate. Lucas is not alone. Other organizations have asked the same question: Not Dead Yet (I am on the board of directors), NMD United, and ASAN, Autistic Self Advocacy Network. Many people with SMA type two have discretely and privately sought to contact Ms. Bolen and her family. No wants to intervene in the case as one news outlet maintained. People such as Lucas and many others with a disability are asking a basic question: why has Ms. Bolen been lauded as brave and heroic? Why did 1,000 people from all over the nation show up at the "last dance"? Why do people with a disability that express a desire to die receive overwhelming support? Why do snuff films like Me Before You reinforce the notion that death is preferable to life with a disability?   

As I see it, this was a misleading story from start to finish. No human dies in social isolation. Life and the manner in which we die has meaning. For decades, people with a disability that boldly and proudly proclaim a desire to die are lauded. The tracks to death are greased with over flowing support. At no point have I read a mainstream news article that addresses whether a 14 year old has the capacity to make life and death decisions. I have not read any story that asks why child protective services has not investigated the Bolen case. I have not read whether Ms. Bolen has received appropriate psychiatric care or even a psychiatric consultation. I have not read any story that discusses whether a minor has the legal right to die. What I do know is that if a morbidly sick non disabled child expressed a desire to die and had parental support an investigation would be launched instantly. Instead, we have a child with a disability that has expressed a desire to die and has received nothing but support from family, physicians, and the public. This troika of support might be lethal. 

Carrie Ann Lucas wrote: 

This non-terminally ill child is reportedly going to be placed into hospice sometime in August. While Ms. Bolen maintains optimal respiratory health using a bipap machine with a mask to assist breathing at night, she is able to breathe to sustain life without that device for a very long period of time daily. The only way her breathing will stop is to discontinue any form of breathing support, including her bipap, while administering a sufficient dose of morphine to suppress her breathing – in short euthanasia. If this plan goes forward, it goes beyond the allowed “double effect” of making a hospice patient comfortable even if it may also shorten life. Ms. Bolen is not terminal and being comforted through the dying process, but rather her death could only be induced with medication. Link:

There is so much we do not know about Bolen. In the stampede of support to end Bolen's life all nuance has been lost. She is terminally ill. She is in pain. She wants to die. Life is never that simple. Death is not that simple. Diane Coleman wrote: 

as of today, we don’t know whether Jerika and her mother decided to continue with the plan to enter hospice, we don’t know whether the Wisconsin Department of Children and Families decided to intervene and secure better health care for Jerika, and we don’t know whether the hospice provider is willing to deliver enough medication over a sufficient period of time to produce total respiratory failure in a 14-year-old disabled girl who only uses non-invasive breathing support 12 hours a night and is not really terminally ill.

I think it behooves all of us to ask these questions. I think it is the obligation of those directly involved in Bolen's care to answer the very basic questions multiple disability rights organizations are asking. Bolen and her mother chose to make the case very public. They requested financial support and a great deal of money was donated to their "cause". With this publicity comes responsibility. The stakes in this case could not be any higher. We are discussing the life of a minor. Minors have rights and deserve protection. Those protections extend to minors with disabilities like Ms. Bolen.