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Saturday, December 15, 2012

Paralysis Long Ago and Paralysis Today

I came across a music video, No More Wheelchairs, that falls into the category of inspiration porn a few days ago. The video starts with a black screen. White words scrawl across the screen:

Someday there will be
Until then…

The first image after these words show a young well built muscular man without a t-shirt sitting in a mountain bike wheelchair pushing up a steep hill. This is followed by many other images of paralyzed people. For instance, a person using a wheelchair dancing on stage and at a ice rink, surfing, mono skiing, wake boarding, para-sailing, doing sit ups in a wheelchair, a person walking in the exoskeleton, Christopher Reeve, scuba diving, a man pushing a wheelchair on the beach with what I assume are his son and daughter running next to him.  If I watched this video without words and the identical musical score I would have thought cool. My next thought would have been that it is amazing how easily adapted most sports are for a paralyzed people.  But I did listen to the lyrics and they are dreadful.

No More Wheelchairs
by Daryl Holmlund
When I am deep asleep
sometimes I dream of doing things
that I can’t normally do:
Running, climbing,
jumping, flying –
and sometimes I’m dancing with you.
But no dream ever compares
to when I dream that there are no more wheelchairs!
Now to really understand
you’d have to see my dreamland
the place where everyone feels free.
Missing limbs are regrown,
spinal cord patches are sown,
and everyone walks on their own feet.
New legs for Lieutenant Dan
and Chris Reeves is still Superman!
When I have that dream
I try hard to stay asleep,
and when I wake I don’t know how to feel
Each night when I turn out the light
I hope that this would be the time,
and I pray the dream would be real.
I pray that the dream would be real.
Everyone could choose to use the stairs
in a world where there is no need for wheelchairs!

The song was written by Daryl Holmlund who experienced a spinal cord injury in 2004.  Music videos such as the one posted by Holmlund are common. Let me be very clear: I have no doubt Holmlund meant well and is a good person. I find it encouraging that he got an adequate amount of rehabilitation after his injury.  I am even happier that he finished college and is employed as a teacher. It is great that he has gotten into handcycling and I assume other adaptive sports (I gleaned all this from his blog).  He has a very good voice and I wish him well in his career as a teacher and song-writer. What I do not feel is any connection with his experience as a paralyzed man.  This sense of a profound disconnect between myself 34 years post SCI and the new generation of paralyzed men and women troubles me.  I am appalled at the current state of rehabilitation post SCI. The lyrics to No More Wheelchairs illustrates a decidedly mixed message is sent to people with a SCI.  For most with a SCI, rehabilitation is cursory; it is far too short a period of time to learn how to care for a paralyzed body.  By care I mean learning how to control one’s bowels and bladder, realize the importance of skin care, adapt to using a wheelchair, and learn how to cope with the dramatic social changes associated with SCI. None of this is easy.  In fact adapting to a SCI is exceptionally hard physically and mentally.  I am appalled at contemporary rehabilitation. The cure industry has dug its hooks into rehabilitation and introduced many high profit and impractical items such as the exoskeleton.  Given how cursory rehabilitation is after a SCI, it makes no sense to spend time learning how to walk in an exoskeleton. Symbolically the use of the exoskeleton sends a bad message to your average person who mere weeks ago had never thought about paralysis, knows nothing about life post SCI, and has no clue about disability in general.  

Rehabilitation in my estimation needs to be practical and deeply grounded in reality. What a paralyzed person needs the most is knowledge and time. A paralyzed person does not need inspirational songs and images.  A paralyzed person does not need to see others glorify walking with a device such as the exoskeleton.  There is no need for beautiful rehabilitation centers that create a bubble of acceptance. What a paralyzed person needs to think about is not a time when there are no more wheelchairs but instead a depth of knowledge about the wheelchair industry. They need to learn how to check their skin daily and determine what wheelchair cushion they should be sitting on.  They need to learn how to manage one’s bowels and bladder. They need to learn transfers of all kinds. They need to learn how to repair a wheelchair. A veritable revolution must take place physically and mentally. The fact is using a wheelchair is deeply stigmatizing.  We paralyzed people are part of a minority group that is routinely discriminated against. Barriers remain the norm. Physical access to housing and mass transportation abound. Unemployment rates are shockingly high and have not changed measurably in decades.  A paralyzed person needs to learn how to reject the stereotypes associated with disability and assert their civil rights.

The divide between a person such as myself and others who have lived with a SCI for decades and newly paralyzed men and women is cultural. That is the way we as a culture react to paralysis has changed substantially. When I went through rehabilitation long ago I was taught to be fiercely independent and self-reliant. I was taught to be assertive and pro active in caring for my body.  I never heard anyone talk about cures for paralysis. This was not subject of discussion. The unspoken message was hard to miss—this is your life and get on with it.  I also learned about the grim social realities associated with disability at college. I was surrounded by other young men and women who knew far more about disability than I did. I learned about exclusion and the fight for education. One of my first roommates went to a special segregated school for the handicapped, a fact that stunned me. I learned about baseless prejudice from first hand experience. The greatest period of learning in my lifetime took place in those first few years after paralysis.  I learned and accepted I was different—different in that my civil rights would be routinely violated and I had better fight back.  The risk as I perceived it was great—social oblivion and wasted life were a distinct possibility. The bias I encountered drove me. I wanted to be the best student in class and crush my peers academically. I wanted to get laid on a regular basis to prove I was indeed a sexual being. I was determined that I would marry and be a parent. I was going to get a PhD and do so at Columbia University. I was determined to have a life.

None of what I learned as a young paralyzed man is reflected in what I read about people with a recent SCI. I have read much about the exoskeleton and stem cell treatment in China and other countries. I have heard Christopher Reeve lauded on a regular basis. I have heard some people state they will “hold on” or wait a seemingly arbitrary number of years until scientists discover a cure for SCI.  This enables some to put life on hold; unemployment, the lack of relationships, and failure to seek or receive an education can all be tolerated when one lives a virtual life in purgatory waiting for a cure. Some will commit suicide years post injury because a cure is not forthcoming. I have visited truly beautiful rehabilitation centers that contain high tech gadgets but do little else to help a person adapt to a SCI in the real world.  I have read about rehabilitation centers that change their name to include the word rejuvenation.  I guess this marketing strategy works.

Lost today is a very simple fact: disability is not about overcoming a physical deficit. Disability is not an individual problem or singularly unusual. Disability is not about paralysis, blindness, deafness, or any other bodily deficit. Disability is a social malady. When I read this in Robert Murphy’s The Body Silent in 1980 it was as though I was struck by lightening. There was nothing wrong with me! I do not wish as Holmlund does for a day without wheelchairs. I think wheelchairs are an instrument of power.  My wheelchair makes my life go.  It is a powerful force. This belief gets me to the heart of the cultural divide between myself and people with a recent SCI.  Disability is not about what one cannot do it is about society’s refusal to negotiate difference.  Our country is constructed for people who are bipedal and typical. Those individuals, verticals as Mike Ervin humorously referred to them on his blog Smart Ass Cripple, knowingly choose to be exclusionary. We as a people choose to exclude those who are different. Culturally we not value people with a disability—they are too different from the norm. We accept bias exists and choose to do nothing. We ignore 40 years of legislation designed to empower people with a disability. And now we are not equipping people who experienced a SCI to assert their rights as citizens.

Let me end with a suggestion: Rehabilitation centers like to have visitors who can inspire patients. Paralympians are a perfect example. This is in part great. Such a visit can open a new world of adaptive sports to people with a recent SCI. But I would suggest a far more important group of visitors should be asked to speak as well. People from disability rights groups such as ADAPT, independent living centers, disability studies scholars and other activists should speak. This would undoubtedly open up a whole new world and prepare people for the real world where bias is alive and well.  


Esther said...

I have been an amputee for 40+ years. I agree with your sentiments, although I am not knowledgeable about current rehab for SCI. To me, osseointegration of prosthesis or transplant of hand, arm, or leg seems impractical, extremely risky, or both. A wheelchair, prosthesis, or crutches is a tool to enable me to move or to accomplish things.

A friend went thru rehab for an incomplete SCI 15 years ago in Atlanta, and that was extremely practical and focussed on independence.

I cringe that I still see the topic of 'overcoming disability' in the media - it strikes me as so 1970s. Nobody overcomes a disability - you adapt and find ways to get as much functionality as possible. When you cannot reach every goal, you prioritize, and ask for help.

When there is something physical in my dreams, I am using a prosthesis if the action calls for it (running or something). Most of the dreams that I remember have a social or economic topic (layoffs and mergers visit my dreams).

william Peace said...

Esther, You get it. Your prosthesis or my wheelchair is indeed a tool, a powerful means of adaptation. I agree many surgeries are risky and far too many that involve a person with a disability are impractical at best. I had not connected the concept of overcoming with the 1970s. That sure was the message in the olden days as my son would say.

Lynn said...

Amen. Rehab centers reinforce and, indeed, feed off of anti-disability bias even as they attempt to empower their clients. Many of the participants in this disconnect are just well-meaning people who are too steeped in the mythology around their own jobs to get it, though at the higher management levels I think it's more a matter of the pragmatic cynicism of marketing.

I watched a video recently, produced by a pediatric rehab facility in the Midwest, about a teenager who sustained a high cervical SCI. The thrust of the story is that this young man had already been "written off" and discharged to a skilled nursing facility; but a Physiatrist from the rehab center went in to evaluate him and - gasp! - discovered that his injury was incomplete!! Thus, his previously-unnoticed potential for rehabilitation was miraculously revealed, and he was saved from a life of "staring at the ceiling" in a nursing home! Cut to scenes of the young man working hard in rehab, driving a power chair in the snow, and rebuilding a life at home with his family. All wonderful for this young man... but meanwhile, the spin from the rehab center had me swearing at my laptop like a lunatic. First of all, any Physiatrist or even PT who deserves their license ought to be able to determine whether a person has an incomplete injury or not. Sanctifying this particular doctor in brightly-lit soft-focus for making this discovery seems a little ridiculous. But above and beyond that... they are in effect saying that if this young man *had* sustained a *complete* high-cervical injury, then it would be OK, and in fact inevitable, for him to spend the rest of his life rotting in a nursing home - not even getting out of bed. My God. In order to highlight what wonderful things they've done with this one kid, they are willing to write off an entire category of disabled people as hopeless. People who can and do live active and productive lives if given the appropriate support and yes, rehabilitation. For a rehab center to give tacit approval to DISCARDING people who don't meet their arbitrary standard of "rehab potential"... I have friends who are high quads. I have had friends who were vent-dependent high quads. Yes, it sucks, and every one of them will tell you so. But aside from the obnoxious inconveniences of body maintenance, the only thing standing between these people and full participation in society and in whatever pursuits they find fulfilling is the availability of appropriate resources. Society does enough to marginalize people without this kind of bullshit coming from a REHAB CENTER! OK, I'm getting worked up again, sorry. But, yeah... is a disability rights perspective missing from the world of rehabilitation... ya' think?!?

It doesn't help that a disability rights perspective is utterly absent from the professional training that most rehab professionals receive. At least, it was when I went to PT school in the 80's - I can't say for sure about today, but nothing I'm seeing in the field makes me think that this has changed. Mind you, we had plenty of time during our training to hear about the political advocacy agenda of our own profession - why it's important to defend the distinctive features of our practice act from encroachment by other professions - why the entry-level doctorate is the Future Of Our Profession and is the only way to achieve The Respect We Deserve - and so on, ad nauseum. But did we ever ONCE talk about how we can be a part of getting our *clients" The Respect They Deserve? Not even one mention, ever. I would remember, if it had happened. And in today's context, well... if you hosted two simultaneous guest lectures, one about disability rights and the other offering an exoskeleton demo... well, let's just say that would be a really bad scheduling idea.

william Peace said...

Lynn, I think much of what passes for rehabilitation is deeply flawed. Your story about the incomplete quad is a good illustration of the sort of draconian rationing that takes place. The concept of rehabiliation potential is inherently subjective. What does potential imply? Potential means walking and a reaching specific goals that enble one to be independent. My conception of independence and potential are quite different as I consider independence to be based on one's given social situation. I know high level quads who I consider to be independent, have full lives and interesting careers. This level of independence is achieved differntly than others and involves a physical support system.
As for a disability rights perspective I am unaware of any rehabilitation facility that would consider much less incorporate such a viewpoint. This absence is much to the detriment of people going through rehabilitation. Far too many people who experience a SCI fall into a cravasse from which they never emerge. This is not a personal failure but a societal failure.

Middle Child said...

Wow. This is exactly how my husband Don and I felt and feel. He was injured in 1982 and what you write "When I went through rehabilitation long ago I was taught to be fiercely independent and self-reliant. I was taught to be assertive and pro active in caring for my body. I never heard anyone talk about cures for paralysis. This was not subject of discussion. The unspoken message was hard to miss—this is your life and get on with it. " is spot on. When Don had his accident, the doc just said to me two days later "Don is now a Quadriplegic. The Spinal Cord is completely severed and you will have a long haul ahead of you both." full stop and off he went. Some rellos thought that was a bit cruel but I think its what got us there wherever there is... we never held our false hopes - and although there were some pretty bleak times for both of us as we learned to deal with things all in all the life we had seemed better than many other married couples...Don was a very practical man re fixing things or telling me how to fix things - and he did not suffer fools gladly and I loved that about him. People can't handle a crippled man becoming uppity or seeking value for money paid. Thanks again it is so good to read this because its how we were.

Unknown said...

I know that sometimes no one pays attention toward this issue. Being disabled is an issue that needs to be addressed, quite aggressively, if I might add. In fact, many disabled people are not aware that they can get benefits when they file for a social security disability. I was hoping that they’d be aware of it.
- Erminia Cavins