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.
16 comments:
Fantastic post!!! I can only imagine the ire you stir up in those of the "disability as tragedy" school of thought that is so prevalent. Great job!!!
Bill, we each subjectively experience the land of disability uniquely...some as a person with a disability(ies), some as caregivers. Our experiences of this life are equally valid, equally intense and equally personal.
As we both know, our experiences and beliefs shape our representation of this unique world. I know you sometime rail against the "cure industry." I would give my life for a cure for my son, stem cells growing new connections for basal ganglia, release of spasticity, relief from contractures. Our perceptions are a result of our subjective beliefs; never wrong, just subjective beliefs.
Beliefs are less a result of scholarship than our interactions with other primates. Some are great, some, frankly, shit.
What is important, what sustains life, is that we take a bit from each other's experience. There are as many views of disability (i.e social models, etc) as there are religions. "True" believers are incapable of tolerating opposing views...it is my hope that we can all cull bits of truth from the diversity of our beliefs...our collective evolution of belief about disability is evolving, never static, always building upon our opennesss to each expression of others' reality. Warm wishes....
Like Phil, I'd give anything for something to cure my daughter of her refractory seizures. There have been times when I've winced at your vehemence and what some might call contempt for views different than your own. However, I have never come here and read your words and left angry -- on the contrary, even when I don't "agree" or have a different viewpoint, I have felt free to express that viewpoint. More often, though, I have learned from you and begun to see disability in an entirely different way. I thank you for that.
Phil, I thought I was clear: the focus on a cure to spinal cord injury is as valid as my goal of equal rights. The aim is simply different. I rail against the cure industry because in my opinion it is not a positive influence in the day to day life of people with a spinal cord injury. I like the use of the term true believers. For me, truth is a quest for equality in terms of civil rights. I think this is an admirable goal.
Elizabeth, I have reread my post many times. I am not contemptuous of those whose who hold different views. I find it hard to understand how you could reach this conclusion. I have stated again and again that the search for a cure to spinal cord injury is a laudable goal. More generally, the eradication of diseases is a laudable goal as well. I am glad you feel free to comment here--especially when you disagree.
Phil and Elizabeth, On cure: I get where you would each wish a cure was available for your children. Even if a cure never exists I have no doubt you will still love your children. Is that not what parenting is about regardless of the presence of a disability?
I was not referring to contempt in this particular post but was, instead, referencing what you yourself described in the many hateful comments that you've received over the years. Sorry that you misunderstood that -- perhaps it was my poor writing.
Elizabeth, I am still note sure I get your point. This is not a matter of poor writing skills. You write well all the time. Remember the line from classic film Cool Hand Luke? We have a failure to communicate.
Elizabeth, I have been thinking about your reply as well as Phil's. When you state you wish a cure existed for your children this is what I hear--and this may or may not be intentional, only you can judge this. I hear I wish my child did not exist. I wish my child was typical. By logical extension I wish people like my child did not exist. Talk of cure makes me decidedly ill at ease. Is a quest for cure not an effort to eliminate those society does not value? I lived the first 18 years of my life as a typical bipedal person. I have lived almost twice as long as a paralyzed man. I consider my existence before and after paralysis to be equally valuable. Yet my existence is often called in question simply because I am not bipedal. Hence I would suggest we accept people for who they are and value that individual as they are.
Elizabeth, I have been thinking about your reply as well as Phil's. When you state you wish a cure existed for your children this is what I hear--and this may or may not be intentional, only you can judge this. I hear I wish my child did not exist. I wish my child was typical. By logical extension I wish people like my child did not exist. Talk of cure makes me decidedly ill at ease. Is a quest for cure not an effort to eliminate those society does not value? I lived the first 18 years of my life as a typical bipedal person. I have lived almost twice as long as a paralyzed man. I consider my existence before and after paralysis to be equally valuable. Yet my existence is often called in question simply because I am not bipedal. Hence I would suggest we accept people for who they are and value that individual as they are.
Thank you for another great post. Like you it is difficult for me to conceive how so many people are falling into what I call the cure-trap, wasting their lives trying to find a way to become non-disabled again. I do, however, think that much of the difference between the views you and I hold and the views of the other group is the difference between integration and assimilation. We wish for a society that is humane enough to integrate and acknowledge different people and the heterogeneity that such integration implies, whereas those who seek out a cure are more interested in fitting in and becoming one with the majority. Nothing is wrong with either view as you so aptly point out. But what I see as problematic is the fact that the perception of us becomes filled with all these negative connotations and if we dare say we are content with our lives we must be deluding ourselves because it’s a common understanding that we are supposed to be miserable by the very nature of our life circumstances. How will it ever be possible for us to show some cripple pride when most of our group is not able to find it in themselves, is the question I ask myself time and again.
Talk of "cure" doesn't just make you decidedly "ill at ease" -- it evidently brings out the worst in you. I'll make it short and I'll make it sweet: you hear nothing at all and are seemingly devoid of understanding of anything outside the realm of your considerable experience of disability. "I hear I wish my child did not exist. I wish my child was typical. By logical extension I wish people like my child did not exist." Really? That's what you infer from Phil and me, our life's work? I am actually out of words, to tell you the truth. I can only imagine the anger you have inside is immense enough that it spills out, here and there, poisoning everything and everyone in its path. Perhaps, for once, you might want to consider others' "feelings," if not their thoughts, and hold your tongue with some sense of humility of things you know absolutely nothing about.
Elizabeth, You wrote: " I can only imagine the anger you have inside is immense enough that it spills out, here and there, poisoning everything and everyone in its path. Perhaps, for once, you might want to consider others' "feelings," if not their thoughts, and hold your tongue with some sense of humility of things you know absolutely nothing about." We have never met and yet you feel free to deem me angry and capable of poisoning everyone and everything in my path. I would never dream of writing such a thing. If your intent was to be hurtful, mission accomplished. I did not comment about your life's work or Phil's. I wrote about the larger implications of the search for a cure. That is I was writing about the social consequences of such a quest. I would suggest what you likely already know--there is a down side to so called progress. This came to me the other day. I was walking with a parent of a child with Down Syndrome. A total stranger asked my friend with evident disgust "didn't you get tested". What this woman was really saying was why does your child exist. This line of reasoning scares me to the very core. I do not know what you and Phil have personally experienced but I would maintain the discrimination and needless social obstacle we encounter share the same root cause.
Bill, did you really write "Elizabeth, I have been thinking about your reply as well as Phil's. When you state you wish a cure existed for your children this is what I hear--and this may or may not be intentional, only you can judge this. I hear I wish my child did not exist. I wish my child was typical."
So, if your child is failing math, you do not get a tutor because getting a tutor might make your child a bit more "typical" and you would by extension saying "I wish my child did not exist." Or if there is a cure for some issue, and that cure would make your child more "normal," more "typical" you should not use the cure, because you would be saying you do not want your child to exist based on how they are?
You say "Talk of cure makes me decidedly ill at ease. Is a quest for cure not an effort to eliminate those society does not value?" What if Jonas Salk felt this way? What if the inventor of the splint or cast felt this way? I assume you are anti-cochlear implants. I hope I am not hearing you correctly.
And, what if there was some magic treatment or pill for Elizabeth to try, and somehow her daughter's seizures disappeared. Would she be wrong to use it? Would her wish for her child to not exist (according to you) be replaced by her wish for her child to be seizure free?
I am a bit of a coward so wading into the battlefield, which this commentary has become, does not seem particularly enticing. Apologies are due, all round. Simply for the fact that sometimes we unknowingly step on people’s toes (no pun intended) but in good faith apologize, realizing that harm was done.
It is impossible for those of us in the fray to be devoid of emotion when reading about an issue, and commenting on it, that touches upon such a personally invested topic. There may be a common playing field but our background and experiences are quite different.
We all have observed conversations where the participants were clearly not speaking of the same thing and created confusion and even animosity because of it. That is what is happening here, as much as I can Judge by knowing all parties involved.
I could break down when, where and how confusion grew, anger spilling over, but the fact remains that it did. But while an argument and misunderstanding that we have with a friend whom we see on a daily basis often causes pause, equally frequent a small measure of forgiveness for the sake of the relationship can be useful. Internet relationships carry no such burden. And what a shame. Because all of you are great individuals, struggling with difficult situations and in the end are on a journey that does contribute to addressing the egregious situation of disability in society.
We don’t need to all get along for this to continue and perhaps certain paths cross and then continue separatel,y but the anger of these confrontations benefits no one, even if it feels that it does well to ‘mark the enemy’. There are no enemies here.
Eric, Thank you. I did not intend to turn the comment section into a battle ground. I am deeply sorry my words hurt good people. That was noy my intent. I agree nothing good comes from the anger expressed. I also agree there are no enemies here. This entire exchange is well out of the norm and I hope will never be duplicated.
Bill, your post is excellent. Unfortunately, you used your academic mind to analyze Phil and Elizabeth's responses which led to the unsettling comments following. Knowing you the way I do, I know that you meant no offence or harm from it, but you have to watch out for the line those of us caring for the severely disabled tread. We accept our children/adult children fully, but we wish life for them was easier. For some that means "cure", for others services and acceptance...mostly a combination of both. Where we can, some of us work with feet in both camps, which I know you see as honourable in every way. I am sorry you are being maligned, however: I have met few people who has so staunchly defended the rights of all disabled people. I am thankful for that.
Claire, Thank you for your kind words. I truly meant no harm. I regret this entire exchange of comments. I hope such a fierce exchange will never be duplicated and this seems a good place to end.
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