Cure for SCI and Being a Bad or Good Cripple

Many people do not get why I think of myself as being a bad cripple. The moniker I have used is a puzzle. I always hear the refrain "but you are such a pleasant person". I am indeed a mild mannered though a bit intense person. Although it is impossible to ever really know, I would argue I am easy to be around. I truly value stability in personal relationships and in my life as a whole. Hence when my niece who is extremely disability aware hears me use the phrase bad cripple she cringes. I am a bad cripple because I am violating certain social norms. People with a disability you see are supposed to be miserable. We are expected to be constantly seeking out a cure. We should be spending all our time working toward this goal with various doctors and rehabilitation centers. These doctors are supposed to be brilliant, devoted to helping the less fortunate. The more exotic and innovative the cure the better we people with disabilities are perceived to be. Hence if you want to raise money and go to China for dubious stem cell treatment you will be lauded for your efforts. The risk involved and the long odds to success in terms of cure are not relevant. You are doing your best, searching out every possible cure and damn the risk you are going for it. You are a hero! Think Christopher Reeve as the archetype the media and society lauds--he was the classic good cripple. Who is the is the archetype of the bad cripple? People like me that express no interest whatsoever in cure. I am not against cure for spinal cord injury. Read that sentence again please. Such research is important and worthwhile. I support the efforts of researchers assuming they do not use images and notions of pity to raise money. At a personal level however, I find such research irrelevant to my life. Why undergo treatment that has no track record, the long term implications unknown, and results iffy at best. I am quite content with my crippled body. I like my body. Would I prefer not to be paralyzed? Of course. But I would also like to be stunningly handsome and am not. The simple fact is there is nothing i cannot do that a person who walks can do. Paralysis has not stopped me from getting an outstanding education, publishing my work, teaching, getting married (and divorced), fathering a child etc. All these ordinary experiences are thought to be out of the realm of people with a disability. Hence it is not paralysis that has been the bane of my existence but the way people react to my paralysis and wheelchair use.

I think we as American are more comfortable with the good cripple. The good cripple wants nothing more than to overcome his or her disability. The good cripple accepts that the normal body, the bipedal human body, is the cultural ideal. The good cripple accepts a socially inferior position in society, happy for a hand out and all too willing to exploit their diminished social status. Need to raise money? Just get up on stage and say I want to walk again. People will cheer your efforts and write check. Enter me, the bad cripple. I am, please brace yourself, happy. Oh, the nerve! Worse yet I do not have an interest in a cure for spinal cord injury. What do I expect? To be treated as a sentient being. I consider myself to be equal to my bipedal peers. This is a social afront. Why imagine the nerve? I expect the country to be accessible. When I confront needless architectural and social barriers I get angry. I have rights and I assert them. This makes me about as popular as Oliver Perez among NY Mets fans. No one wants to confront an angry cripple. He should be happy for society largesse. He should be pining away for a cure. He should not be upset we the almighty and powerful bipedal humans forget to include access. We are ever so sorry. Come back another day and if we deem it worthwhile we will make our facility accessible. My reaction is blunt: screw you. You are breaking the law and an old one at that. I do not want a hand our or charity, I want to be treated with equality and respect. Many do not know how to react to this firm assertion of my inalienable civil rights. The travel industry, in particular mass transportation, seems the most oblivious to disability rights.

What I find perplexing is why? Why are disability rights perceived to be different, vastly different to all other important civil rights we as Americans value. Separate in terms of race and education is a given. All are taught about Brown vs. the Board of Education Supreme Court decision. It is the bedrock of our public education school system. But how come separate is acceptable when it comes to transporting and educating children with a disability? I saw gross violations of the ADA at the public school my son attended, violations that impeded my ability to be an active and involved parent.

In one of my favorite memoirs written by a person with a disability Stephen Kuusisto's Planet of the Blind he wrote that "on the planet of the blind no one needs to be cured". Wow! Wow, not because of the beautiful prose but rather the affirmation of the civil rights of blind people and by extension all others with a disability. Kuusisto made this same point in a post at his blog Planet of the Blind yesterday. The post in question, Project 3000 and Post -Molecular Medicine at the University of Iowa's Institute for Vision Research, discussed cure, the medical model of disability, disability rights, and the care cure divide. He closed this post with a quote from his colleague Edwin Stone.

“Blind people need to go to the eye doctor for general ophthalmological care—blind eyes are still important eyes.
One day Ed said to me:
The evangelical disabled person might adopt the attitude, ‘Why do I need to be cured? I’m fine as I am,’ while the evangelical curing person might adopt the posture, ‘Why spend any resources on figuring out ways to accommodate visually disabled people? We ought to spend time trying to cure them,’” “It’s grossly inappropriate that these two concepts are so separate. There’s no reason we can’t pursue both—aspire to reduce blindness through surgical or medical treatments, while simultaneously being sensitive to the needs of people who are visually impaired and working to help them in every way possible.”

Amen, care and cure are not mutually exclusive. Kuusisto thinks this is taking place in ophthalmological care. I do not doubt his assessment. However, I would contend such a nuanced view has not extended beyond this field and is far from being accepted in the medical industrial complex. For people with a disability to be accepted as equals the medical model of disability must be rejected and a far more nuanced understanding of physical difference must be accepted. I do not see this happening any time soon when it comes to spinal cord injury. Kuusisto thinks this revolution is underway. Sorry but I disagree. I disagree because i have had way too much contact with the medical industrial complex lately from wound care to urological surgery. One theme, a constant, has been a gross lack of physical access and a social understanding of the nature of disability. Some of the problems are purely medical but the vast majority of obstacles are social. Simply put, access in the broadest sense of the term is not valued or desired. Much money is spent on what I call window dressing--what people with no experience or knowledge of disability think is important. Hence we get lots of electric door openers and a multitude of accessible bathrooms all located in the wrong place. Why are such errors made? Again, simple: not enough people with a disability are woven into the fabric of society. We have no voice when decisions are being made that impact us directly. This is a problem that will take many more decades to rectify.

Weighing in on Space

When people, okay when women, visit my home I am made to feel as though I have failed home decorating 101. These unnamed women are always polite and diplomatic. They will will inevitably compliment my house as being tasteful, neat and clean but there is always a pause. This pause is followed by statements such as my home lacks a "woman's touch", the absence of window treatments, drapes or some other fashion failure. I don't mind this one bit. No woman lives in my house and it does lack a feminine touch. I am not exactly surely what that feminine touch means in terms of how a home looks but its absence is apparent. I must confess however I do not like living in my living room. I have what can only be deemed an ugly clinitron bed in my living room. On my very nice leather couch I have my medical dressings spread out. All the furniture is out of place and at night I wish my house and body would return to normal.

As I feel asleep last night I was truly bothered the way my house has been rearranged while healing from my wound. But as I began to feel sorry for myself I thought--knock it off. I am lucky to be in my home. A mantra I often repeat. So why did my temporary living arrangement bother me? The answer came to me this morning reading Tobin Siebers book Disability Aesthetics. Siebers attempts to redefine both disability and aesthetics. While much of the book was not to my taste in part because Siebers looks at much art which I have little interest in. One small section of Siebers book did hit home--here I refer to the section on "Hysterical Architecture". I have often been struck at how violently people react to accessible space. I have heard again and again how access and durable medical equipment is ugly. I have heard heated arguments about how access "mars" a building or is an "eye sore". It dawned on me that while i obviously reject such beliefs I have nonetheless incorporated them in my thinking. When I renovated my house I did not want the ramp to my home to be too visible. I did not want my bathroom to look like too medical even if it meant being inconvenienced. Part of this concern was financial. To sell a house it must look aesthetically pleasing. Access I have learned is rarely if ever aesthetically pleasing. What has struck me as an obvious problem is that access is "ugly", an "eyesore" because we do not value said access. Access when constructing a building always appears to be an after thought--something that must be forced into an already beautiful design because of the law. And we know many hate the law, especially the ADA. That pesky law bankrupts small business and costs schools a fortune.

Given the above I was struck by Siebers following observation:

It is as if the public interprets ramps, accessible doors, and signage for the disabled as symbols of disability that require a mustering of defense mechanisms. In no time, plants and flowers clutter wheelchair ramps, handicap signs are tucked away, and decorative rocks and wood chips block accessible walkways. Nature abhors a vacuum, and society treats handicapped parking spaces and accessible pathways as empty paces to fill: locales marked by accessibility inevitably become handy collecting points for trash, building materials, or delivery trucks (pp. 79).

Society is indeed very defensive. It is as though the mere presence of accessible entrances is an afront to the delicate sensibilities of society. The presence of the disabled body and hence access for that body is unwanted. Every person I know with a disability can relate to the Seibers quote above. We have all had experiences where the space for us has been violated. Trash in wheelchair lifts are a common problem. Snow plows dump snow in handicap parking. Delivery trucks block curb cuts and fill up handicap parking spaces. Handicapped seating is used to store extra chairs and supplies. Signs if present are obscure and often grossly wrong. The list of violations is seemingly endless to me. Indeed, violations in terms of equal access are the norm. When traveling I always assume problems will arise and sadly I am almost always correct. What all these seemingly minor violations indicate is that we people with a disability are not valued nor welcome. We are ugly, a reminder of all that can wrong, a tragedy even. I am not sure how to change this societal mindset when even I am guilty of incorporating it. I will thus cut myself some slack knowing that my wound will heal and my ugly bed will find its way into its proper place--my bedroom. So for now I remind myself to be content with my existence even if it does not exactly please me.

Conference Day

Yesterday I attended and presented a paper at the 13th Annual Women's History Conference at Sarah Lawrence College. The title of the conference was Breaking Boundaries: Body Politics & the Dynamics of Difference. I am not drawn to academic conferences like I was earlier in my career. I now go to few conferences and only those that are of particular interest. The Sarah Lawrence conference was of great interest to me as the subject matter was of interest and it would not be anything like overwhelming national meetings of anthropologist. The fact it was close to home added to its appeal. I also hoped to meet Susan M. Schweik author of the Ugly Laws. In my estimation Schweik's work is critically important to a little known subject--ugly laws that swept the nation and profoundly affected people with disabilities. I heard a number of very good presentations and overall the conference was well worth my time. It reminded me how much I miss interacting within the academic arena.

My paper was about my experiences as a wound care patient and an adaptive skier. Below is my paper.

“Disabled and Proud” and “Piss on Pity” are two popular slogans used by disability rights activists. These words in my estimation fail to resonate with the general public thereby highlighting the divide between those with and those without a disability is as profound today as it was 20 years ago when the Americans with Disability Act was passed. While the law is now firmly on the side of people with disabilities, disability rights is not valued or equated with other important civil rights legislation. This great cultural divide leaves us with stereotypical images and notions—the person with a disability as a tragic figure or conversely the “super crip”, a person that overcomes a given physical deficit. Another level of complexity exists within academia where two opposing theoretical constructs dominate discourse about disability. Here I refer to the medical model of disability versus the social model of disability.
Despite fundamental flaws, I have come to accept the social model of disability because it reflect my belief that disability is primarily a social problem. This is a minority viewpoint. The average American has been taught overtly and subtly that disability is bad, a tragedy even. Doctors on the other hand perceive disability as nothing more and nothing les than a physical deficit. No consideration is given to the social implications of disability, its cost, or the gross lack of access within medical facilities. Of course there are multiple exceptions to the general observations I have made. The point I am trying to stress is that given the general cultural perception of disability one would expect acute care hospitals to be an amenable environment for a person with a disability. In contrast one would expect the sporting arena, one that places great emphasis on physical ability would be hostile to the inclusion of people with a disability. I contend the exact opposite is true.
Based on my experience as a person with a disability and a parent, I have learned to fear not only doctors but hospitals. As a parent with a disability, many health care professionals assume I cannot rear a child. To be blunt, I am not parental material in their estimation. I am fearful of critical care hospitals because there is no doubt I am perceived to be an expensive, complicated, and time consuming patient—one most likely to have poor insurance and lack a basic education. Sadly these assumptions are often true. No minority population in the United Sates is as disenfranchised as people with a disability or shut out of accessing adequate health insurance. In short, acute care hospitals present a hostile social environment dominated by many architectural barriers. In contrast, I have found adaptive sport program especially those associated with skiing and kayaking to be not only welcoming but present few if any architectural barriers. This phenomenon is fascinating to me in part because it is contrary to accepted cultural beliefs.
My views are based on my own experiences as an adaptive skier and kayaker and most recently as an in and out patient at a critical care facility. In September 2010 I discovered a stage four pressure sore, the most severe wound possible. The wound was grossly infected and I had MERSA, a potentially lethal anti-biotic resistant infection. Within days of hospitalization I experienced not one but two extremely bloody debridements and required multiple blood transfusions. Frankly, I was deeply embarrassed by my wound. I knew such wounds are serious and can be life threatening. I have successfully avoided such wounds for 32 years, a rarity among paralyzed people who are often plagued by pressure sores. I was naïve enough to be obnoxious in my success at maintaining my skin integrity. I mistakenly believed I was smarter than other paralyzed people. In the last six months I have learned I am not one iota different from other paralyzed people. What separated me was access to first class medical treatment and an excellent education.
What struck me upon admission in the fall was the stunning lack of knowledge on the part of those charged with my care. I felt like a human science project—a rare species that descended upon the hospital. The focus was not on getting me better but rather what sort of “special needs” had to be met. The subtext to the question about “special needs” quickly became apparent—how much extra labor would I require. Worse yet, I had a self inflicted wound that was easily preventable—not my words but those of the examining physician. I was what doctors refer to as “gp rubbish”. Recovering from a stage 4 wound is a long, slow, and agonizing experience. I spent three weeks in the hospital and when medically stable was given 48 hours to either transfer to nursing home or purchase a clinitron bed and arrange around the clock care—neither the bed nor round the clock care was covered by insurance. For once in my life I was grateful to come from a large Irish catholic family. I would not be able to sit up for at least 3 to 4 months and I quickly arranged to have my siblings meet my basic needs. Insurance would cover wound care but nothing else.
Wound care is a unique world. A dizzy array of people need wound care. Elderly people, people with cancer, the terminally ill, people who had major surgery, people who shattered bones, and at the bottom of this list are people like me. We are the least desirable patients. Our wounds take far longer to heal and require careful monitoring. We also require physical access. Access I can assure you is not solved by plastering little blue wheelchair logos all over the place. Instead it requires not only physical access but use of high priced technology such as wound vacuums and clinitron beds. We thus require a significant financial investment. Hospitals are loath to spend such money—even wealthy suburban hospitals. As a result, hospitals do not own much of the equipment needed. They rent the clinitron beds and wound vacuums. Admission and treatment becomes complex, placement in a hospital difficult at best. Extended waits are common and people suffer as a result. For instance when I needed a clinitron bed it took the hospital 24 hours to locate such a bed and have it delivered. Upon delivery no one knew how to use the bed or turn it on. I shuddered to think what would happen if the bed broke.
As one who spent a decade in the 1970s on neurological wards in the pre technological era, I am amazed at the technological advances in medicine, foremost among them wound care. My severe wound without a wound vacuum would take one year to 18 months to heal. With a wound vacuum it is almost healed in six months. This is remarkable technology as is a clinitron bed that enables one to be in one position 24 hours a day for weeks at a time and not have a skin breakdown. These technological marvels come at a price—they are costly in the extreme and beyond the means of too many people. My wound has taught me many things about this technology and what one bioethicist has labeled “taming the beast”. The beast, technology determines care, the human component is not valued. In the six months I have spent healing I learned much about dependence, social isolation, economic marginalization, and a caste system in medical care.
This is all a far cry from my experience as an adaptive skier and kayaker. Adaptive athletes provide great fodder for the media. Visuals usually involve a profoundly disabled athlete doing something miraculous. What is celebrated is not the athletic or personal achievement but rather the ability of the disabled person to overcome a physical deficit. The more profound the disability the better the story. The negative portrayal of disabled people is not only oppressive but also reaffirms that nondisabled people set the terms of the debate about the meaning of disability. The antiquated images of disability resonate with the general public and reinforce economic, political and social oppression experienced by people with disabilities. In terms of sports, it is assumed that a physical or cognitive deficit precludes not just an interest in sports but the ability to participate. What most fail to realize is that the dichotomy between disabled and nondisabled is a fallacy. Life is simply not that definitive.
My wheelchair is the ultimate symbol of disability, a message that ski resorts and people that ski seemingly did not get. I am relatively new to skiing in large part because I am a direct beneficiary of a technological revolution in adaptive sports equipment. Adaptive skiing started in the late 1970s but did not become user friendly until the mid to late 1990s. The gear, or rigs as they are called, are akin to Ferraris. There is no slope a paralyzed person cannot ski. The elite of these skiers are the men and women seen on the X Games. But I am far from an elite athlete. I am your classic weekend warrior. I am content to go up the lift and ski down the intermediate trails at my own pace—and I will admit I have one speed, fast. For me, this is an accomplishment—an ordinary accomplishment I share with bipedal skiers. I have put much thought into why I enjoy skiing. Sure the activity itself is fun and the views from the top of a mountain magnificent. But I quickly realized when I skied no one cared one iota that I was a sit skier. The focus of all my conversations was about skiing: we discussed the snow, slope conditions, how fast did I ski and which trails were in the best. No one has ever asked me why I use wheelchair or anything about the nature of my disability.
The complete lack of interest in the nature and cause of my disability is unique and fascinating. Why, I wonder, does it seem as though skiers have no interest whatsoever in my disability. I am not alone in wondering about this. I have spoken and interviewed many adaptive skiers and their respective spouses and children. In addition, I have interviewed adaptive sports program coordinators at resorts throughout New England. All report the same thing: one’s disability is not socially significant on a ski slope. Exceptions do exist however. Some mountains do not want adaptive skiers. Adaptive programs are utterly absent at some resorts and adaptive skiers report they have encountered stiff resistance to their existence. This is quite unusual and appears limited to elite resorts. The result is a network of information willingly shared among adaptive athletes. Adaptive programs are hooked into this network of information and base their programs at resorts that are open and welcoming. This is wise as the space used by adaptive programs to assemble is donated by the mountain.
The result of this network of information is that adaptive skiers know where to ski. Hence adaptive programs become a highly visible presence at certain mountain. For instance New England Disabled Sports at Loon Mountain in New Hampshire has a large program and has produced para Olympic and X games competitors. For a weekend warrior such as myself this knowledge is vitally important given the expense of adaptive skiing. An entry level sit ski costs about $3,000 and a high end rig can cost well over $8,000. This does not take into consideration any other costs such as clothing, travel expenses, or gear that does not last long such as outriggers. Skiing is expensive for all but prohibitively expensive for adaptive skiers. Many foundations exist that will purchase sit skis for people. In addition all adaptive programs charge on a sliding scale and have scholarships available. In short everything that can be done on the mountain is being done. The biggest challenge then is simply to get people to the mountain itself. This is beyond the budget and ability of many people with a disability. The latest unemployment figures for people with disabilities remains unchanged—it has hovered at nearly 70% for the last 20 years.
Never did I think I would gain such a unique sense of freedom skiing. Here I am not referring to the sensation of skiing itself but the social freedom or equality I feel when on the slopes. It is the only place I have felt normal or free from the stigmatized identity that goes hand in hand with being a person with a visible disability. For a person such as myself that came of age before the ADA existed it highlights the impact and failure of the law. We Americans pay lip service to the ADA and adhere to the law when convenient or to be blunt when it does not cost too much. What is painfully evident in the post ADA era s a growing frustration and anger about the law, specifically what the ADA is supposed to do and the reality people with a disability experience. Our country in particular the medical industrial complex remains grossly inaccessible and adheres to an antiquated medical model of disability. Sure hospitals meet the letter of the law but it is not people with disabilities that determine what a “reasonable accommodation” is. Discrimination then is alive and well but in a sanitized ever so polite form.
Rather than end on a sour note, I would posit that sports has a central place in disability rights. It is one of the few activities where people with a disability effectively network. But this networking is done without any connection to civil rights efforts or such groups as ADAPT. I would argue we people with a disability that are sports oriented need to reconnect with our roots. And those roots are directly tied to vigorous civil rights efforts. More generally we need to connect with disability studies scholars who have ignored the importance of adaptive sports. If we can connect disability rights, disability studies and adaptive sports we can not only improve physical access but negate the stigma all too often associated with disability. In short, there is a chance we can make disability cool. I may be naïve in this assumption but we need to start somewhere. In order force people to think differently about disability we must go against the social grain. We must break social boundaries and expectations. This thought came to me last season when my son made a sign for my wheelchair that I left on the seat at the base lodge. It said simply “Gone Skiing”. I observed many people trudging along with ski gear look at the sign and do a double take. Many smiled but it was clear the sign made them think and I hope question assumptions they had made about people who use a wheelchair.