Search This Blog

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.  

Friday, December 14, 2012

Shocked: Just Shocked

This video shocked me. "Get Outta Town Retards". This hateful graffiti was spray painted on a home in a small town in Central Illinois. The home and cars were spray painted with other hateful words. This took place in the spring of 2011, a day that changed the parents life. The family was attacked because they have two daughters with Down Syndrome. The response is from the daughter's brothers. I have no idea how much work went into making the above video. I do know that 129,753 on Facebook people "like" this and 55,043 have shared the video. These numbers are a shock. I want to know why did this story not go viral instantly. I want to know why this did not become a national news story debated from coast to coast. This video kept me up last night. How could people be so cruel. How could a human being knowingly spray paint this on a home. I wonder do my neighbors think the same thing when it comes to the group homes that are nearby. Worse yet, do residents of any town in America hate students with Down Syndrome?

Sadly I know the reason why this video did not go viral. Disability rights and civil rights are never thought to be one in the same. The ADA is not and has never been perceived to be civil rights legislation despite the fact that is exactly what it is. Disability rights ring hollow for the vast majority of Americans. If disability rights is discussed it is perceived narrowly--as in the decision to have a bus with a wheelchair lift. Secondary schools simply do not in any way discuss disability rights as part of its curriculum on the civil rights movement. We get a day off for Martin Luther King Day every January. Every child knows exactly who King was and what he did. Every American is exposed to King's I have a dream speech. I am sure no student in elementary school knows who Ed Roberts was. I am sure 99% of the teachers in elementary schools have no idea who Ed Roberts was. I am sure no students, teachers or administrators know the history of accessible transportation, specifically the fight to get wheelchair lifts on public school buses. This lack of knowledge is called ignorance. Ignorance breeds misunderstandings, hate, fear and exclusion. Ignorance made the above video possible. Today is a grim day in my mind.