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Wednesday, January 16, 2013

Charity, Tragic Models of Disability

This ad is striking to me. It reminds me of the 1990s. More specifically it reminds me of 1995 when Christopher Reeve sustained a spinal cord injury. Suddenly spinal cord injury was news worthy. Reeve was the perfect man to put a face on spinal cord injury. When people thought about Reeve the thinking was very specific--Reeve took on the part of tragically crippled man. He played this part to absolute perfection. He used a large power wheelchair and was a vent dependent quadriplegic. This image, tall vibrant man paralyzed, could not be any better. Better yet, Reeve was well liked in Hollywood, had connected friends such as Robin Williams, a beautiful wife, and children. The more perfect he was the more tragic his injury became. Reeve oozed sincerity and dignity. The mainstream media gushed about Reeve's courage and will power. Reeve had a single interest--cure for spinal cord injury. He created a multimillion dollar foundation in his name devoted to cure and cure alone. Over night Reeve became the go to guy when anything tangentially associated with spinal cord injury was discussed in the mainstream media. He essentially cornered the market on spinal cord injury with his single minded dedication to a very narrow and specific focus--cure. This single minded quest fit perfectly with the cultural perception of disability. Disability is bad and all people with a disability want to be cured.

For quite sometime I refused to comment about Reeve. I readily admit I silently seethed in anger. No one could be so deluded or selfish I told myself. Reeve at some point will get it. Reeve never got it. To me this is the real tragedy associated with Reeve. He was a singularly destructive force in terms of disability rights. Reeve never grasped the most important aspect of disability: disability is a social malady. Disability is at its very core a civil rights issue for all people with a cognitive or physical deficit. The problem is not our unique physiology but society's refusal to negotiate our difference. Reeve never embraced nor understood disability rights. Instead he embraced the role of tragically crippled man. More than once he stated he was not interested in wheelchairs, ramps, elevators, etc. He believed he was different. Unlike others with an identical injury, Reeve was fawned over. In distancing himself from the social aspects of disability he embraced a medical model of disability with a twist. He wanted to be cured and had no interest in anything else but a cure. Rehabilitation? No thanks, I want to be cured. He created what I call the Christopher Reeve School of Paralysis that has adversely affected the lives of people that experience a spinal cord injury. Rehabilitation after a spinal cord injury is cursory today. A new outlook has emerged. Get them in and get them out ASAP. The fact newly injured people are ill prepared to care for themselves or have an appropriate wheelchair or wheelchair cushion is not relevant. People who experience a spinal cord injury live in limbo--a liminal state. They are paralyzed for sure but are now willing to wait until a cure is found. Thus the focus becomes maintaining their body for the glorious day when they can walk again. This mind set enables the cure industry to gets its hooks into people totally unfamiliar with disability. Enter silly and unproven devices such as the exoskeleton used at rehabilitation centers.  Rehabilitation centers once empowered people with a disability now they set people up to fail. Long ago, rehabilitation was about one thing--maintaining your independence and learning how to care for a paralyzed body. This was hard work and boring. The profit margin was nonexistent. Rehabilitations stays were prolonged, months. Medically this likely was not necessary however it awarded newly paralyzed people time to adjust physically, mentally and socially to their new status. In looking back extended rehabilitation was akin to living in a halfway house. It gave structure and a safety net. Through trial and error one adjusted. This is all gone.

The above thoughts were prompted by the terrible video clip above. Reeve's legacy lives on. This ad is a classic example of how such demeaning tactics to raise money work.  I simply wish such videos were a thing of the past; a period piece in which we shake our collective heads and wonder what was I thinking. So I wonder and worry. What sort of life lessons are paralyzed people being taught today. Will we create people like Christina Symanski who died a slow agonizing death via starvation and dehydration? Will people stop living and instead wait for a cure that is not likely to come in their life time?  Gloomy thought on a lovely snowy morning in New York.


Jo Kelly said...

Hey Bill! I think CR set our community back 20 years with his rantings about the cure....I heard he was booed at the 1996 Paralympic opening ceremonies - only wish I had been there to see it and boo myself! It's so funny that you spoke about this today as I was thinking about this very subject on my drive to work this morning! Great minds and all......have a great day!


Elizabeth said...

I agree with you and am grateful for your voice. I always shied away from CV -- albeit, uncomfortably -- but was never able to figure out/articulate why I did so. I think it's also why I shy away from movies that exalt actors who take on disability --

I can't help but think, though, that Reeve is largely gone from the culture -- not just literally, but figuratively. Who thinks about or knows of him now?

Elizabeth said...

As an antidote to that video, here's something awesome:

Middle Child said...

Spot on. My husband and I used to get just as bloody angry over "the cure"! People assumed we liked and were proud of Reeves because all Quads must (they thought). Nothing further from the truth. They were just as shocked when we agitated against legalising Euthanasia - and thought we were just a bit paranoid. Reeves was badly injured - dreadful 0 but he was duped easily into their game. How did he actually die - I can't recall

Melanie Suzanne Gerber said...

Bill -
I agree 100% with your latest post. Rather than sitting back and WAITING for a what you can TODAY to live your life to the fullest. I have great memories of our days at Hofstra when guys in wheelchairs would have wheelchair races over the unispan. Society is a melting pot of all types of people. Diversity is what makes things interesting.
And with the aging population, more adults are using canes, walkers, scooters and wheelchairs. Why don't we put some of the research money for spinal cord inguries into adding more ramps and curb cuts? The benefits are recognized immediately!!

Becky Andrews said...

Some great comments and agree - let's celebrate and enjoy life. I will always remember in one of my grad classes the professor saying the challenge isn't the disability as it is the perceptions and what you will experience in society with inclusion. At the time I didn't understand ... now I do :). And in answer to your question - yes they do have some employees with disabilities I am happy to say!!

Lynn said...

It seems to me that Reeve's problem was fundamentally one of privilege. He came from a highly privileged and well-connected upbringing, and only became more privileged and better-connected once he became a celebrity. While he did engage in some activism in his pre-disability life, it was primarily around environmental causes and high-profile international human rights stuff - the sort of issues that don't require looking at civil rights through a lens that exposes one's own advantages. When he unexpectedly joined a demographic that is disadvantaged in our society, his wealth and privilege kept him insulated from the societal issues that most disabled people face, and probably isolated from any significant disabled peer group as well. The cure-focused movement already existed (The Miami Project and whatnot), and I have no doubt that Reeve was surrounded from Day One by people who wanted to exploit his celebrity "for the cause." I even remember a very disturbing article in New Mobility wherein a doctor who had assessed Reeve for a phrenic nerve stimulator was interviewed. This doc, who had obviously set his hopes on becoming the famous doctor who made Superman breathe again, was livid that Reeve had turned down the procedure he recommended, and retaliated by criticizing him in the press - disclosing all sort of confidential medical information and calling Reeve a coward for declining the treatment this doctor had offered. Regardless of whether Reeve made a good decision or not, I was shocked at the impropriety of this doctor's public statements, and frankly disappointed in New Mobility for giving him a platform to be so unethical. To me, this really underscored what a strange, distorted, and downright creepy experience Reeve must have had as a celebrity patient, even as he was sheltered from a lot of the real-world difficulties that most injured people face.

None of this negates the extent to which his cluelessness harmed people, in contrast to the good he could have done by standing with the disability community and advocating for respect and reasonable accommodations rather than setting himself apart as a "resident alien" in the land of disability - a tragic figure who was never meant to be "one of them." I'm just saying, it would've taken one heckuva a "road to Damascus" turnaround to transform the man Reeve was pre-injury into the clear-eyed advocate of social justice that many of us wish he could have been. He was already a living product of the very barriers to social consciousness that civil rights advocates fight to dismantle. It's just unfortunate that the "meme" (in the pre-internet sense) of his epic tragedy ended up having such leverage on the public consciousness. This turned out to be extraordinarily convenient for the insurance industry. All it took was the slightest weakening of the collective commitment to the (as you say) unprofitable and un-glamorous process of thorough, *practical* rehabilitation for the benefits afforded to injured individuals to be eroded permanently. (And this occurred across the board, not just for SCI. Stroke rehab today is an utter disgrace.) I honestly think this erosion would have happened even without Reeve's help, but he did help catalyze that process by giving credibility to the red herrings that created a diversion while people got screwed out of having their real-life needs met.

william Peace said...

Jo, I do not know if Reeve was ever booed. I was always puzzled why he was admired by the nondisabled population. More than one person told me something to the effect "You must be so inspired by Reeve". In reply I politely said no and briefly explained why. I gave up on Reeve in 1996 after his speech to the Democratic Convention. See link:

Middlechild, Cure for SCI is a great goal, worthy of significant research funds and effort. My issue is the way funds are generated is inherently demeaning to those who want to live a rich and full life post SCI. Again, cure is a noble goal but I for one am far more interested in civil rights.

Melanie, Yes, disability is part of human diversity. I wish most people shared this belief.

Lynn, I have met a few wealthy i.e. privileged paralyzed people. None shared Reeve's narrow focus on cure and cure alone. He used his social status and wealth to insulate himself from other people with a disability. This required a giant ego--the belief he was different from all other paralyzed people. He also surrounded himself by cure industry types who were happy to exploit him. I got in trouble recently by voicing the opinion that the best thing to happen to the Reeve Foundation was Reeve's death. A rude observation no doubt but true in my estimation.

Lynn said...

That's very true - not all wealthy people are blinded by privilege and ego. Reeve definitely had a giant ego. I tried to read his autobiography years ago and couldn't make it through the chapters and chapters of unadulterated name-dropping. That's the world and the value system that he came from.

Still, invoking FDR in a speech about disability rights? It doesn't get much more tone-deaf than that, does it? Unless one were saying, "I would like to see this country come to a point where a disabled person could be President without concealing the disability." But that sure isn't what Reeve said, is it?

Nessie Siler said...

I used his autobiography as part of my work for my B. A. , and it struck me how he was protected- as others have said- from many of the difficulties which most of us face. Especially financial worries.
Notwithstanding his shock upon discovering his insurance had a lifetime cap, he could and did manage to keep himself able to access what he needed thru speaking engagements, writing, and yes, even the occasional acting gig.

Would that we were all so fortunate.

Stephen said...

Late addition to this post.

If, say, you suddenly went blind or lost your hearing, would you not immediately investigate treatments that would restore these faculties? I'm sure that I (already paralyzed, btw) would aggressively pursue treatment or look to what was looming on the research horizon before I would seek out welcome wagon committees.

Having been SCI for nearly 30 years, and having long given up the ghost of any meaningful physical recovery, I completely grasp the vital importance of the social model. After so many decades there's no denying that I am a member of the disabled community.

But for those whose disability is recent, it is a medical situation.

Thus there's a spectrum that connects the medical and social models of disability. They are not mutually exclusive.

Alas, someone smarter than I will have to explore the hybrid that connects them.