Being a self-professed bad cripple does not endear me to
everyone that runs across my blog. In fact I routinely get angry email and
comments that borders on hate. I read these emails because they bother me. It
has never been my intent to hurt others and I am often taken aback at how my
words are misunderstood or why they prompt deep seeded anger. Regardless, my
words have enraged some people and a friend once told me I piss people off in a
nontraditional manner (a comment I am not sure how to take). Sometimes it is a
specific post that incites angry replies; my analysis of the video Purple
Feather posted in April 2011 still generates fury. Recently one reader
commented:
Are you aware of what people
with a disability have to live on. It's not much… Until you know anything about
anyone who has to ask for help, I suggest you volunteer with the physically
challenged. Learn about their life. See how they struggle to make ends meet…
You have to be out of your fucking mind. I wish for you that you are incapacitated
for the rest of your life (hit by a car, burned in a fire, shot in the spine…
and then I'd love to see you begging on the street. I'd give you money and a
very long speech on KARMA. Good luck to you. I hope you get that heart
transplant that you desperately need. You're not a fucking idiot. You are
cruel… When you actually learn what it's like to live with a disability then
you should comment on these types of videos. Until that time. you should keep
your thoughts to yourself.
Most angry email I get is associated with hot button issues.
For instance, everything I have written about growth attenuation or the so
called Ashley Treatment prompts a visceral response. I have gotten hundreds
emails from people who rail against my opposition to growth attenuation.
Suffice it to say, the email I get in this regard makes the comment above
appear polite. Critical email often accuses me of not knowing anything about
the subject I am discussing. In terms of growth attenuation this is partly
correct. I have not raised a child with a cognitive and physical deficit and
yet feel comfortable being a staunch opponent of growth attenuation. I try hard
to reply to severely critical email in a neutral way. I defend my views and
refuse to be baited into replying in anger.
One group of people who have consistently taken me to task
are those with a spinal cord injury that have devoted much if not all their
time to a cure for paralysis. I do not understand the fury that has been
directed at me by those involved in what I call the cure industry or the
Christopher Reeve School of Paralysis. When Reeve was injured in 1995 I grossly
underestimated the impact he would have on the cultural perception of spinal
cord injury. I have been severely critical of Reeve and once published a diatribe
entitled “Wishing for Kryptonite” in the Ragged Edge. I will readily admit I
have not been diplomatic in my criticism of Reeve and the cure industry. While
I am no longer disturbed, the fact remains Reeve fundamentally altered the way
spinal cord injury was perceived. Last year I wrote: Reeve
cemented an antiquated perception of disability. Disability is a fate worse
than death. It is a singular experience, a tragic experience. The
"job" for all people with a spinal cord injury is to seek a cure to
paralysis. No risk is too great. No procedure too risky. No amount of money is
too much. No matter what the focus is always on walking. High tech medicine is
embraced even if it is shockingly expensive and impractical. Think the
exoskeleton. Reeve also helped establish the idea that if we cannot be cured
today then our paralyzed bodies must be maintained in good working order. This
is a full time job unto itself. It can require a staff of people as Reeve had.
But it requires total dedication. A family, job, and social life is of
secondary importance.
A singular focus on cure post
spinal cord injury is hard for me to comprehend. Simply put, I have never
perceived using a wheelchair as inherently inferior to bipedal locomotion. I do
not compare my paralyzed body to a typical body. I do not bifurcate my life
into pre and post injury. My utter lack of interest in a cure for paralysis was
once commonplace. In the Christopher Reeve era, a belief in cure is
increasingly common and is indicative of a significant cultural shift. When I
was paralyzed my peers and I spoke of our future and railed against the stigma
associated with our spoiled identity. Today, newly paralyzed people have no
connection with old timers such as myself. Few know anything about the
disability rights movement and I get a sense some expect to leave
rehabilitation with a new adapted van and ADA accessible home. The lack of
concern—what will I do now—worries me. Far too many people with a recent spinal
cord injury make a Faustian bargain: they will focus on cure and if it does not
come at some point in the future they will reevaluate their life. Too often
this re-evaluation will be harsh and deadly. Christina Symanski is a perfect example; her overwhelming negative
assessment of life post spinal cord injury and decision to end her life by not
eating and drinking is no longer unusual. I don’t get it. She wrote:
Unless you've been in my
shoes, I have a hard time absorbing any justifications, or reasoning as to why
I MUST, or SHOULD continue to suffer. I'm not just referring to
"quadriplegics" in general. I'm talking about women, with high level
complete spinal cord injuries, that are in their thirties, that were injured in
their twenties, that have no children, that lost a career, that have IBS, and
that suffer from daily bouts of autonomic dysreflexia. If you are one of the
few people on the planet that fit in that category, by all means, share your
insight, and advice on coping with me.
If you don't belong in my boat, please save your judgment, and just take
a moment to think what you might do in my situation, and how you might want to
be treated... Imagine needing to ask someone for every need; from scratching an
itch, to brushing your teeth, to tying your shoes. I can guarantee you, from
experience, that your worst fantasies, would not do justice, to the reality of
actually living this way. I have lived on both sides of the fence, both as an
able bodied adult, and as a disabled adult. I know exactly what I'm missing out
on, and how much better life could be.
I too know life pre and post
spinal cord injury. My life pre and post spinal cord injury have been
wonderful. I have led a privileged life. Like any other person I have had my
fair share of trials and tribulations. I was married and divorced, an experience
I do not recommend. I had a severe skin wound in 2010 and spent almost a year
in bed recovering (and many more months recovering from being in bed so long).
On the positive side of the ledger I earned a PhD from Columbia University,
have published widely, taught at the university level, and have had the great
joy of being a father. All in all
life has been and continues to be sweet.
A cure to spinal cord injury was
not relevant in 1978 when I was paralyzed nor is it important to me in 2013.
For some, my lack of interest in a cure prompts anger. One of my most strident
critics wrote that “I know your school, and have seen dozens of minds and
spirits broken by it”. I am not really
sure how I break spirits and minds by embracing an identity tied to disability
and disability rights; however, this charge has been levied by others. Some
comments have been very harsh. In one of my earliest posts circa October 2007,
“Why Focus on Cure”, I questioned the larger significance of Christan
Zaccagnino’s decision to go to China for a surgical procedure designed to cure
or improve her functioning. Ms. Zaccagnino commented “I am mrs zaccagnino
and you have no idea what you are talking about asshole.” Another person wrote: I pity you Bad Cripple. You
preach equality for disabeled persons in wheelchairs and criticize Ms.
Zaccagnino for her decision to think beyond her condition and strive for her
dream of walking again. I walk on two legs and I dont consider myself Ms.
Zaccagnino equal, because she is exceptional. I can only pray to have half her strength,
perseverance and passion. Her will and positivity seem to be beyond what your
acrimonious logic can comprehend. "Why focus on a cure?" because some
are unwilling to accept anything less then their dreams. Shame on you to
disparage those who dreams. Shame on you.
I remain perplexed by these
comments. I have repeatedly stated a cure for spinal cord injury is a laudable
goal. If a person wants to focus their life around a cure to spinal cord injury
so be it. I have not nor will I ever comment on the current status of advances
in the cure for spinal cord injury. People devoted to cure know far more than I
ever will. But I do have the right to question and analyze the larger social
significance of this effort and the impact it has on the lives of all people
with a disability. I am afterall a disability studies scholar and activist. I
have recently begun to wonder though if some of those dedicated to a cure for
spinal cord injury are creating a cult like existence for themselves. Even the
slightest criticism of the cure industry prompts a strong reaction. For
instance I have recently taken some heat from those involved with Rutgers
University Care Cure Forum. This website offers a dizzy array of over 70
different forums. I find little of value in the Care Cure forum despite the
fact I look at it every few months (I am specifically looking at comments on
sports equipment). I am decidedly uncomfortable with the praise heaped upon
Wise Young of the W.M. Keck Center. “The mission of the W. M.
Keck Center for Collaborative Neuroscience is the development of effective
treatments for acute and chronic spinal cord injuries and to move these
discoveries from laboratory to human lives as rapidly as possible.” I do not take exception to this goal but I do worry
about the impact it has on the lives of people with a recent spinal cord
injury. The same can be said when I look at other powerful institutions such as
the Reeve Foundation and the Miami Project that push for a cure to spinal cord
injury. There is a zealous following to the cure industry I am simply divorced
from. I am not willing to spend my limited time searching out clinical trials when
I encounter needless bias every time I leave my home. I have always maintained
the problems associated with spinal cord injury are largely social. Of course
some people struggle with paralysis. For instance, Symanski went into great
detail about her physical struggles with her bowels and autonomic dysrelexia. I
always end up returning to what Robert Murphy wrote long ago—disability is a
social malady. And this is where I think our resources and efforts need to be
directed. Social supports that make life possible post spinal cord injury. So
to my critics I say more power to you. I wish you well and consider us to be on
parallel tracks. Go ahead and
focus on cure. It is an altruistic goal. I on the other hand prefer to focus on
equal rights.
