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Monday, March 7, 2011

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.

Sunday, March 6, 2011

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.

Wednesday, March 2, 2011

Hydra Versus Cyborg

I have a strong fascination with body art. I have always been captivated by tattoos and to a lesser extent non traditional piercings. In part my interest stemmed from the stigma attached to both the disabled body and people who knowingly modified their body via tattoos. In the last twenty years society has experienced a veritable revolution in disability and body art. Today we people with a disability are protected by law, civil rights legislation known as the ADA. Indeed, we have had 40 years of progressive legislation all designed to empower people with disabilities. In body art, tattooing is now acknowledged to be a fine art. Tattoo artists and their customers are no longer restricted to bikers, sailors and other social outlaws. Today anyone and everyone seems to have at least one tattoo. I love this change and hate it at the same time. It is great people are more open to body art and always look forward to seeing art literally walk by me. However, I mourn the way tattooing has been commodified by television shows and mundane things like housewares and clothing . Likewise, some time I miss the old days when I fought an up hill and pitch battle for access and disability rights. Don't get me wrong, equal rights is still a battle for people with disabilities but an ever so polite one. How does tattooing and disability relate beyond the concept of stigma? How we perceive the body, the tattooed body, disabled body and modified body in the broadest sense of the term has undergone a radical transformation. We take for granted the incorporation of the body and technology. But how we define, value and perceive that technology is what captivates me. I think my wheelchair is the essence of cool. Others see it as the ultimate symbol of disability. I think my mother's prosthesis is also cool. Others look at the loss of a limb and not the technology that replaced it. This too adds a layer of complexity. The mixing of technology and the body, much of it from the health industrial complex is dependent upon how we value a given device. Cochlear implaints for instance are valued and an entire industry now exists around their usage. Do we value interpreters for the deaf? Not so much. How about hearing aides for the elderly. No this is not valued or covered by health insurance. Who cares if the elderly can communicate.

The thoughts above were prompted by a post by Wheelchair Dancer on February 27 entitled Crip Anatomies. She wrotte:

"I am beginning to be disturbed by the almost universal insistence that my body, my flesh body that is, disappears when I gain an assistive technology body part. I would rather begin to investigate myself and my movement potential as a kind of hydra. And I do mean hydra instead of cyborg. In cyborgs, the mechanical and the fleshly are distinct but fused into one humanoid and recognizably humanoid organism. There's no excess; technology replaces the flesh bits. Hydras seem to allow for the possibility of the technical and the flesh to continue to exist together, even if they organism they jointly create is now akin to that which traditionally has been relegated to the category of freak or monster."

I love the idea of hydras. Something about cyborgs have always bothered me. Perhaps it is my horror of Star Trek Borg like organisms or cyborgs from the Terminator movies or if you want to go farther back to Frankenstein. The essence of these cyborgs was the destruction of the creatures humanity. In some ways my wheelchair does the exact same thing--it destroys my humanity because all people seem to notice is the wheelchair and not the human using it. Hydras seem to incorporate both the human and technological component. Rather than seeing a freak or monster I see a unique human being, one that has done what we human beings have always done--adapt. I am paralyzed and I have adapted via my wheelchair. Blind people adapt via use of a guide dog. These sort of observations could go on and on. The point is we as a people have melded technology and the human body in ways never dreamed possible 20 years ago--roughly when the ADA was passed into law. What we are slow to change is not technology but how we perceive those advances and inventions. It is here where the problems lies. We value cell phones, computers, the internet, televisions and gaming platforms. One can access these technologies with ease. Why our choices are diverse and as varied as the colors of a rainbow. How important is this technology? Our economy would crumble without it. Now try and access the usage of a wound vacuum such as the one I used or purchase a wheelchair. All of sudden our choices are severely limited. Wound vacuums are not covered by insurance. Wheelchairs are covered but you get a stripped down model that will last a year or two. And we are talking about high priced items. Wheelchair can easily top $8,000 to $10,000 and more. Try and service a wheelchair in less than 24 hours and you are out luck. What happens if yoru cell phone or computer breaks? It can be serviced or replaced at a host of places. Just today I saw that happen when I bought a fancy new cell phone. This to me is an obvious social issue. One that requires a social revolution comparable to the technological revolution that has already taken place. I for one hope to see more hydras working on the problem.