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
NO MORE WHEELCHAIRS
Until then…
LET’S MAKE THE BEST OF IT.
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.