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Sunday, November 30, 2014

Inspiration Fail: The Cure Industry Misleads and Paralyzed People Suffer the Consequences

I love hockey.  I am an avid fan of the game. I go to a few games a year. I enjoy watching players develop in the OHL and the AHL. I find it fascinating how players fix "flaws" in their game and develop into NHL players. To make the NHL is a hard road. Players, teenage boys, leave their homes at an early age and precious few become NHL regulars. Hockey players are tough in the extreme. Injuries are common and can be devastating. Concussions happen with alarming frequency. Broken bones, torn tendons and severe lacerations are routine. Career ending injuries could happen on any given shift. Frankly it is amazing no professional players have been killed. What is relatively uncommon in hockey are spinal cord injuries. They happen for sure but spinal cord injuries is not what leaps to mind when you read about injured hockey players. Based on various Canadian spinal cord injury websites it is estimated 17 players above the age of 9 will experience a spinal cord injury in a given year. Given the popularity of the sport, that number is quite low. Younger players, teenagers, are most likely to experience a spinal cord injury. Most spinal cord injuries are a result of sliding into the boards head first at full speed. Thus cervical injuries abound.

The paralyzed hockey players I have read about are typically high school or college students. The most well known person I can think of is Travis Roy who was paralyzed during his freshman year at Boston University in 1995. Post injury, he has become a motivational speaker whose sole interest is a cure for SCI. With help from wealthy donors he founded the Travis Roy foundation. Another young man, Jack Jablonski, an American high school student experienced a cervical SCI in 2012. Like Roy, Jablonski created a foundation specifically designed for finding a cure to spinal cord injury. A cure for spinal cord injury is a laudable goal. I totally support this effort. As I often jokingly note, I do not recommend the paralysis. Here is where I depart from Roy and Jablonski. I take issue with the social ploys used to raise money for a cure to SCI. Simply put, pity sells. A charity model of disability creates revenue streams that empower people like Roy and Jablonski. They can make a career out of their injury and desire to skate again. I get why the charity model is embraced. It is highly effective. Christopher Reeve perfected this model. The charity model of disability, in this case SCI, is an unquestioned financial success. The general public sucks it up like nectar of the gods. Pity sells newspapers, magazines, creates high television ratings, inspires people to donate and hold fund raisers, and provides great visuals. Cue the dramatic images: tall young man standing or skating juxtaposed to the same person in a large power wheelchair post cervical SCI.  This results in tear jerking emotional videos of Jack Jablonski Be13eve in Miracles and the tag line "stick tap to hope". Sorry but this video is so over the top I cannot even provide a link.

Here is what is lost in the tears, pity, out pouring of support, and invitation to drop ceremonial pucks: the greatest obstacles people with paralysis encounter is social exclusion and stigma. The statistics associated with disability are grim. The vast majority of people with a spinal cord injury are unemployed, poorly educated, and typically live on the razor edge of financial oblivion.  Accessing mass transportation and affordable housing remains exceedingly difficult. The last 40 years of progressive legislation designed to empower people with a disability that reached its zenith 24 years ago with the passage of the ADA has put the law on the side of supporting the civil rights of people with a disability but has utterly failed to resonate culturally. Again, cue up the charity model of disability. The more emotional the manipulation the better the yield--that is an adequate revenue stream for various charitable foundations whose sole or primary goal is a cure for spinal cord injury. This is wonderful for young men who become the public face of a foundation. If the Canadian statistics mentioned above about the prevalence of SCI are reasonably accurate I wonder what happened to the 16 other young men who experienced a comparable injury. Where are these young men? Are they employed? Are they in college? Are they living in a nursing home? Who is providing their basic care? These people are the dark underbelly of the cure industry. These are the people we do not want to think about.

Surely I exaggerate. Sorry but no. I must be bitter! Sorry but no. I am an angry narcissist! Sorry but no. I am angry but my anger is not about my paralysis; I made peace with that a very long time ago. I am angry because people are being duped and mislead. Worse, lives are being destroyed in part because it is all too easy to individualize disability. Writing a check, shedding a few tears after watching a video about a young man who is paralyzed in a hockey game empowers people to assume  they did their bit to help the less fortunate (think the ASL Ice Bucket challenge). This may make people feel better but it does nothing for the vast majority of people who are paralyzed. I am advocating for myself but my main concern is never me but rather the next person who is paralyzed.  I am happy to take the lead and social abuse that comes with advocating for disability rights. In terms of people with a disability I am privileged. I have a first rate education replete with a PhD from Columbia University.  I have a son who I love very much. I work at Syracuse University, an institution with a long and distinguished history in support of disability rights. I have formed a family of friends in Central New York where I live. All these ordinary and wonderful aspects of life make me an exception. In terms life with a disability I am a rarity. And this is what we should be focused on-the lives of paralyzed people. Thus I wonder why has the unemployment rate for people with a disability not changed in 25 years? Why are most people with a disability living on the edge of poverty? Why is accessible housing and mass transportation grossly inadequate? Why are these issues not front and center when discussing disability?

The answer to the questions above are deeply rooted. Culturally we individualizes disability. Disability is not about an oppressed minority group. Disability is not about empowering people via education and employment. Disability is a problem. An individual's problem and bad luck. We will do our best to help the disabled within reason. Reason here is a code word for money. We will do our best provided it does not cause a significant financial burden. Hence the laws that support people with a disability are perceived to be an onerous burden and people often object. The ADA is an unfunded federal mandate critics shrilly proclaim. The fact this is wrong is utterly lost when disability is consistently framed as an individual problem. This gets me back to hockey.

The latest young man led to believe disability is an individual and largely medical problem is Michael Nichols. He experienced a cervical spinal cord injury playing high school hockey in New Jersey earlier this year. I heard him interviewed on the radio and was saddened.  I wondered where and when did rehabilitation go wildly wrong. Spinal cord injury is now complicated. Partial injuries are more common thanks to broad based advances in medical care. A protocol exists that limits the damage at the point of injury. This is wonderful as are the many websites that provide detailed information about how to adapt to a SCI. But post injury rehabilitation has embraced the cure industry. Walking as an idea has been embraced. I am aware walking, if a reasonable goal, should be attempted. Post paralysis life is all about maximizing remaining functional movement. If that includes a narrow range of walking, standing or slight movement great. This however is boring stuff. It is not inspirational. No miracles are involved. Rehabilitation and adapting to a SCI involve hard work. The focus on adaptation to SCI does not generate revenue. It does not warm the soul. The ability to assert one's authority and question disability based bias and stigma does not endear one's self to bipedal, typical, others. Just as I was brain washed into embracing a fierce form of autonomous behavior post paralysis circa 1978, newly minted paralyzed people are sold the idea life can be put on hold until a cure exists. Walking as an idea, a glorious ideal, is used to mislead people. Cure is a revenue source--an industry that markets and sells itself via imagery of disability as tragedy. The goal is not to lead a productive life but rather maintain one's body until a cure exits. Thus it is understandable how young men are not taught to be autonomous but rather become professional patients waiting for a miracle. Video such as the hockey themed song abound:

I have followed Nichols, Roy and Jablonski from afar via various media outlets. I shake my head in wonder. To me, they represent a much larger cultural failure. I do not fault them. They are very young men whose life was radically altered in a fraction of a second. They are a product of their time just as I was. My mentors were hard foremost among them was Robert Murphy.  Disability is a social disease was a favorite quip Robert Murphy, author of the Body Silent often made. This quip and its larger meaning does not resonate for people recently injured. Instead, I read statements by Nichols and I cringe: "I'll do anything to win. I hate to lose. This injury, I'm not going to lose to this injury." One reporter gushed: He views his recovery like a hockey game that needs his constant effort, shift by shift, day by day.". I admire the spirit but bemoan the focus. Ignored is the very different reality most people post SCI will encounter. Any connection to the larger disability rights movement or disability studies is utterly absent. In place of autonomy far fetched ideals abound. Be a paralympian! Do not let SCI win! Work toward a cure! The result is people leave rehabilitation unprepared for life. Yes, it takes a while for the body to adjust to paralysis but the focus is not placed on the most basic needs. The biological reality of life post injury has not changed. Pressure sores are to be avoided. Urinary issues must be dealt with carefully. For those with a cervical injury, autonomic dysreflexia is a serious and life threatening reality that can in most instances be avoided.

I would suggest we need to radically alter rehabilitation post SCI. Invest in the young men and women with a SCI. Extend rehabilitation from mere weeks to months as a first step to reclaiming autonomy. Focus on immediate needs. Teach people how to manage bowel and bladder care. Provide people with excellent equipment such as wheelchair cushions and power or manual wheelchairs that are appropriate for the level of injury. Educate people about how to care for their body. Teach people how to avoid common secondary complications associated with SCI. Once able to control their body and medically stable move to step two that as of today does not exist. Create, on a state by state basis, cripple universities that operate like a halfway house. Teach people disability history. Detail what what disability rights activists and disability studies scholars have accomplished. Empower people via education. Teach them how to assert their civil rights. Assign them mentors. I am not referring to paralympians but rather ordinary people that are paralyzed and lead a typical life.  A fundamental part of all this eduction is employment. Include a human resources department as the final step to the resumption of life. For those without family support or an existing network of friends provide temporary housing and temporary work. Plan and implement activities nationwide. Job fairs, university programs, adaptive sports festivals, equipment expos, and exposure to independent living centers. Expose people to ADAPT, Not Dead Yet and the Disability Education Defense Fund.

All of the above costs money. Millions of dollars would be needed. The savings personally and financially would be astounding. Invest in newly minted cripples! Let's go wild and dream big. Invest heavily at the point of SCI. Provide the best education. Provide the best equipment. Expose people to adaptive sports of all kinds. Create sport and fitness centers. Locate accessible housing and mass transportation. Do not let any person leave cripple university without employment. Do all this and we will have funded a social and technological revolution.  To my fellow cripples, I ask for your help and ideas. How do we make this happen? How do we revolutionize lives post SCI? How do we undermine the medical and charity model of disability so that those who know nothing of disability can be empowered to be, gasp, typical and equal.


Unknown said...

You are never going to sell anyone on those big dreams on paper. You have to make it happen first to show people its actually achievable. So set up a research programme to put mentors with new cripples and compare the outcome at specific points with the control group of new crips who havent had that support. Collect facts and figures and "evidence" in the language that disability-unaware people can understand.

And maybe also recognise that the majority of disabled adults arent SCI and we already have resentment issues about how much help and attention SCI's get compared to the rest of us.
Less divisiveness in the disability communitys would help all of us.

Jen said...

I'm a bit different, as my disability has crept up on me in my mid 30s, but I agree.

I am having to spend so much time and energy in researching what I can get, what rights I have.

I keep expecting someone to say 'oh you are at the point when you need a wheelchair, ok, let's talk to you about all that entails....'

nope, I have to keep fighting to get a decent chair, a lightweight one that I can maneouveur on my own.

Figure out all the stuff around how do I get on the trains, petrol stations etc.

Your university sounds like a great idea. I would love to get on a wheelchair handling course, but there isn't one unless you have a spinal injury. Of course that is great if you do have that - and a SI will have a totally different requirement to me, in that I still have good use of all my limbs, my legs just can't support me for more than a couple of steps.

But still, I keep hoping for help and guidance and it just doesn't appear!


tigrlily said...

African-Americans created institutions of higher learning like Morehouse College and Howard University. The women's were transformed from glorified charm schools to centres of excellence. And Gallaudet University is the very model of the environment you talk about where people can develop their capabilities freed from the constraints of discrimination. The models exist, we just have to think outside the box.

Unknown said...

Its not so much thinking outside the box as realising the box is deliberately in the way by design. The status quo doesnt want empowered, educated, aware and capable disabled people, because it doesnt want that for/from its non disabled community either. It doesnt want to invest in disabled people because investment in "people" isnt part of the agenda.

What person "wouldn't" benefit from a halfway house full of mentors and cultural education and actual real help to get a foothold in life and the right attitude to limit the damage from our unhealthy mass societys? But nobody gets that kind of help so theres no template to transfer to new crips or the wider disabled community.

There is however an incredible inability to see the bigger picture, so individuals and small groups can be persuaded to back "innovative" programmes like the suggested crip uni would be. But only by making it about maths and charts and form friendly targets and outcomes. And only up until the point when they realise that their funding is turning out thorns in the side of the status quo. Not that I'm at all cynical..or wrong sadly.

Jen, I did a few years in lightweight self propelled chairs and exhausted myself with research so I'm happy to share anything I know if you want to get in touch? I'm UK based and have a contact me thing on my website at ehlersdanlosinfo dot wordpress dotcom

Jen said...

H - I too am uk based and have eds.

I have done all my resesarch and I know the chair I want, I am currently hovering between Access to work and wheelchair services.

I agreed with wheelchair services yesterday that I can have a voucher, but it will take them 6 weeks to get it to me. WTF. So irratiting, so at the moment I am stuck in a chair which is pulling and damaging my shoulder.

GAH!! Will check out your blog tho!