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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: http://globalcomment.com/opening-ceremony-shows-that-paralympic-inspiration-porn-refuses-to-die/ 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.

2 comments:

ParaTir Quebec said...

Hi Will,

Great post. Lot’s of content.

This is a subject that stirs up conflicting emotions in me.

To begin with, I resented, mocked, and yet secretly admired the Paralympic type. I have always found something vaguely ridiculous about athletes. I mean, if you are able to focus and achieve at that level, shouldn’t you be doing something significant ? But then, it is necessary to forgive others (and by extension yourself) for doing that which is not absolutely perfect. No. The average athlete is not Albert Schweitzer. And so what ? They sure do some rad shit.

But then, surprisingly, with all that intellectual elitist baggage, I became an athlete myself. Totally by accident. Out of the blue, the Canadian government decided to tone up the gun laws. Make a long story short : we actually have licenses here just to own guns ! Suddenly these licenses could expire. Mine did. But then they would not just renew. You had to re-qualify. Very onerous procedure. So I had a choice : What was I doing this for ? Why re-qualify if I wasn’t even going to shoot ? And so, in this one particular, I was drawn to “emerge from our isolated existence”. I joined a very special club. Met a lot of great people. People without a clue about handicaps. Like everywhere. But very special people in other respects. And I got really enthusiastic about shooting. Like riding a bike. After thirty years off, I was still “good”. So I started using Paralympic targets. Paralympic rules.

One day, my brother-in-law says “You could go to the Paralympics”. Just like that. As though the Paralympics is something you just sign up for ! “Sure”, I replied, “and , uh, just for the info, exactly which Olympic event are you training for this time ?” Yes indeed, got the wheels turning. Saw it in his eyes.

So again. Long story short. I get hooked. I train like a little SOB for ten years. (in my spare time of course) I become known in the sport. I shoot the qualifying standard a few times, but I never quite get over the hump into the Games.

-cont'd

ParaTir Quebec said...

-Hi Will, cont'd-

But I have discovered something. Its great to be strong and wide awake. Sport is like music. People divide themselves into Stars and Fans. Stars are super human, and fans are fat ass-hole couch potatoes. A hundred years ago, everybody played both music and sports. Musical literacy was at 85 percent as opposed to 15 percent today. Honest, serious, part-time, amateur participation in any endeavor at all makes you feel GOOD. And the cumulative effect of a population like that is awesome. It is estimated that Florence at the time of the Medici, Michelangelo, Leonardo da Vinci, was 60,000. Find me a town of that size anywhere today, with that kind of intellectual output, and things like the David just sitting outside as street art. Or again. The entire Athenian state, including Attica, had 300,000 people of which a third where slaves. Find me a modern city that size which will project such a shadow in our intellectual history.

There is a French philosopher, whose name escapes me, who spoke of a Société-Spectacle (a show society) whose population was composed mainly of entirely useless spectators living a vicarious existence. If he only knew !

So. Bottom line. Don’t be impressed by Paralympians, but get out and live life yourself (not you personally Will, you are obviously “out there”). Learn to sing from the page with the same ease that you read this text, and you will gain a personal dimension that I can’t readily describe. It has nothing to do with being a star. Just ignore the people around you who don’t get it and smugly tell you not to quit your “day job”.

As for sport : If you want to compete you have to be “in shape”. So you really will do the work outs you should have been doing anyway. And you have to travel a bit (at least to the next town or so) in order to compete. So you will be active. You will be strong. And you will live longer. Take it from a naturally lazy nerd, who learned this truth by pure accident at age fifty. Yes, people will wonder “what’s the point” if you don’t make the Games (or “only” win the bronze). Just ignore it. Live.

Feel the Love,

Gordon from Montreal