Inside Higher Education Picks Up on My Story

Today, Inside Higher Education published an article by Megan Rogers that expanded on the significance of my most recent post about being excluded from a disability related conference held at Hobart and William Smith College. Here is the link: http://www.insidehighered.com/news/2013/11/19/disability-studies-meeting-wasnt-accessible-those-disabilities#.Uotllux0sd8.facebook
I also want to link to Stephen Kuusisto's post at Planet of the Blind. Link: http://kuusisto.typepad.com/planet_of_the_blind/ Kuusisto was equally involved and I want to acknowledge my deep gratitude for the solidarity he and Rebecca Garden displayed. Kuusisto and Garden could have easily decided to participated at the conference. Steps are not an architectural barrier for them. In a rare display of academic and personal integrity, they refused to participate. Kuusisto and I left Hobart and William Smith with deeply mixed emotions.  I had looked forward to this event.  This was an opportunity for me to see a small elite liberal arts college that I was told was gorgeous. It was indeed a gorgeous campus. It also presented multiple challenges for a person that uses a wheelchair. I was shocked, dismayed, and humiliated. For Kuusisto the visit was a trip down memory lane. His father was for many years president of Hobart and William Smith College. I got to see the house Kuusisto spent many years living in as a youth. I cannot say we enjoyed our trip to Geneva, NY but it was eventful that's for sure.

I would like to echo one point raised by Kuusisto in his post. Hobart and William Smith has reacted immediately and appropriately to the civil rights violation I experienced. Unlike many institutions that would form a committee and attempt to sweep what took place under the rug Hobart and William Smith has reacted proactively. President Mark Gearan swiftly apologized and organized meetings that were held yesterday. He has vowed to keep me and Kuusisto informs as to what changes will be made. After an initially awkward exchange with me,  the organizers apologized and they too vowed to incorporate significant changes. I emphasized to Megan Rogers the real significance of the story will be revealed in the spring when the working group meets again. Today, I made multiple and detailed recommendation to the organizers of the event. It is my hope many of the changes I suggested will be acted upon. If this is the case Hobart and William Smith will establish a precedent for how to react to egregious ADA violations other institutions and academic organizations can follow. Sadly this implies more such violations will take place. And I know they will. Indeed, "problems" are what I encounter virtually every time I attend an academic conference. The disconnect here is obvious to me. Access and inclusion is not a problem but rather a matter of civil rights. I, as a person with a disability, have the right to participate and expect no physical or social barriers will be encountered. This is not how my inclusion or participation is perceived by my academic peers. I have continuously asserted I am not problem but rather a human being that shares the same civil rights as others--typical others.

One last point: In the last six months I have made a concerted effort to interact with scholars in the health sciences. My experience in 2010 healing a significant wound shook me to the core. It was painfully clear my existence was not valued by medical professionals charged with my care. I could not help but conclude medical care now worships at the alter of high tech care but in my estimation has lost its soul in the process. Humanism is all too often absent. I want to change how people with a disability are or are not treated in our health care system. Lives are at stake, of this I have no doubt.  Surely the recent case of Tim Bowers death within 24 hours of a severe spinal cord injury is a perfect example of a deeply ingrained bias against life with a disability held by many physicians. Bowers needlessly died because his life was thought to have no value. Worse yet, he was given the illusion of choice. And what was the response of bioethicists? They hailed this man's supposed autonomy. I find this assessment perverse. Hence my effort to interact with clinicians and those currently in medical school or doing their residency. These people represent hope to me. If I can reach physicians in training who are open minded, eager to learn, it will be to the benefit of all. I have no idea if I will be successful but I am feel compelled to try.

An Unexpected Humiliation at a Conference on the Humanities, Disability and Health Care

“Ring bell for access”. I have not seen this sort of sign since the ADA was passed into law over two decades ago. When I came across this sign at Hobart William Smith College I knew my presence at a one day conference designed to address disability, bioethics and the humanities  was  not wanted. Had I entered via this entrance I would have knowingly accepted the fact the organizers violated the ADA. I would be as guilty as they are for violating the letter of the law as well as the spirit of the ADA. 

“Ring bell for access” is an artifact of the past. This was my reality for many years. Before the ADA was passed into law, I rang many such bells for access to buildings. Half the time no one answered the bell. The other times after an extended wait someone would arrive to open the door. In short, I quickly learned “Ring bell for access” really meant there is no desire or commitment to wheelchair access. The sign might as well read go away. Until today I thought these signs were obsolete—akin to “white only" signs that are a shameful reminder of segregation. My experience yesterday was deeply unsettling. A victory in terms of civil rights was supposedly won 23 years ago with the passage of the ADA. After yesterday, I consider the ADA a hollow victory as decades later I am still constantly put in the position of educating people about disability. I am routinely the only academic with a disability present at conferences. This is tiring and disheartening. Barriers, social and physical, remain commonplace.

Two thoughts dominate. First, I was and remain deeply humiliated. Second,  how could this happen? The details are as follows: Along with Stephen Kuusisto, I tried to attend the Humanities, Health and Disabilities Study Workshop organized by Sarah Berry and Lester Friedman. The event was sponsored by Central New York Humanities Corridor, from an award by the Andrew W. Mellon Foundation and held at an elite liberal arts college Hobart William Smith. Dozens of emails were exchanged prior to the event. A website and agenda were established. The hard work required to create a vibrant day long discussion was performed. Sadly, absolutely no one bothered to think about wheelchair access. I knew I was in trouble before I got out of my car. I saw the following sign. 

There was no signage about wheelchair access. Just the above sign pointing one to enter via three steps. The irony to me is that all other participants to my knowledge simply walked up those steps without thought. Not one scholar, people supposedly interested in disability and health care, wondered about the ADA or how a person such as myself who uses a wheelchair could enter. Thankfully Kuusisto is very familiar with the campus. He and his guide dog Nira knew another entrance where I could enter the building. We proceeded to the accessible entrance, went down a hallway to find two steps barring me from the room where the conference was being held. Of course a spectacle ensued. People that know nothing about wheelchair access get involved who desire to help. Ignorance added to the absence of wheelchair access is not helpful. This sort of "help" usually involves powerless people rudely telling me what to do. At this point I am furious as is Kuusisto. I ask Kuusisto to find the organizer Sarah Berry. He sets off and finds her enjoying a cup of coffee. She is blissfully unaware of what is taking place. She is unaware the only entrance to the meeting room is through an emergency exit door. This is a blatant violation of the ADA. I a stunned. Did not a single person do a walk through prior to the meeting? Obviously not. Why should she? I cannot help but conclude she and all others present who were about to spend seven hours discussing disability assumed a scholar with a disability would not be present. This is a fair assumption. Here is a photograph of the group taken after the last time they met. And yes they are standing on the steps I cannot navigate. 

This is my life. I am routinely the only person present at academic meeting that uses a wheelchair. While I am glad Kuusisto was with me I cannot help but feel completely and utterly alone. In retrospect, I think my presence was considered a problem. Equal access was never thought to be a civil right nor did others involved think that I might have something important to offer.  I was a problem. Lip service was paid to wheelchair access. I am sure the organizers were told the event was accessible. This was accepted as gospel truth because either they did not care or were ignorant. Each is equally objectionable.

I was placed in an impossible situation.  I could  enter the building via an obvious illegal entrance or not participate in the event. I was angry and humiliated. I think I had no choice but to do the ethical thing. I asserted my humanity and civil rights and refused to participate. In my opinion Berry and Friedman, conference organizers, did not care one iota. Access and inclusion was never valued. Inclusion was never deemed a priority.  Berry and Friedman should be ashamed. Every participant should be equally ashamed. An event was held about disability and no one bothered to put any thought into wheelchair access. No one gave a damn. 

One last point. In terms of logistics, my time and effort to attend, was disrespected. This is the norm for me. No one considers the logistics I must perform in a world designed for bipedal people. I radically altered my schedule. I taught at Syracuse on Monday and Wednesday. After class I drove to Yale University where I gave a paper at the medical school on Death versus Disability and took on utilitarian philosophers for the first time. My talk drew a good audience. Access was flawlessly handled. I woke up very early the following day, chose not to have lunch with a friend in New Haven or make an easy drive home. I made arrangements for a friend to care for my black lab Kate. I chose to drove five hours back to Syracuse, picked up Kuusisto, drove another 90 minutes to Geneva, NY, and stayed in a hotel so I could be refreshed and ready to contribute. My effort was not reciprocated. In fact I was disrespected in the extreme. So here I sit a day later and I am still seething. How can people supposedly interested in disability appear to be content excluding the voices of people with a disability. How can these people live themselves knowing they humiliated and embarrassed me? Stunned. I remain stunned and wonder when and if a sorry might be forthcoming.Yet again the slogan "nothing without us" seems timely and apt. I dream of a day when this slogan needs to be explained because I live in an inclusive society  That world does not exist. I hope to see it come into existence someday but  I doubt I will live that long. 

A Deer Hunter is Dead: Humanity and Life Needlessly Ended

I am disgusted. Ashamed really of American society. Timothy Bowers is dead. Few will recognize the name even though his death has gone viral. The mainstream press refers to him as “a deer hunter”. His death is a tragedy.  I can see in three or four years a made for TV movie—a real tear jerker. Average man, on an average day, with a newlywed wife and baby on the way goes out to hunt. He has done this many times. He is an avid outdoors man. But tragedy strikes. He falls 16 feet and crushes his C-3/4 vertebra. Imaging suggests he will most likely be a vent dependent quad. Not to worry though, he will be heroic. He will die. And he does indeed seemingly choose to die. The story is full of emotion and short of logic. In fact the story I have just told is utter bull shit.

Bowers needlessly died. In fact when I first read the story my first thought was this man was murdered. Legally killed by his family and physicians. Bioethicists are providing the post mortem cheer squad. Patients rights reign supreme. This is what happens when health care is a commodity. This is what happens when people see a paralyzed person and the first thought is about the expense of keeping such a person alive. So the heart broken physician enters the picture with long white coat flowing and perhaps blue scrubs, the very representation of human compassion, and paints a grim picture of a sudden spinal cord injury. The man is heavily sedated. Imaging depicts a devastating wound at C-3/4. He will likely be a respirator dependent quad. Tears flow. A grim reality is explained—medical costs will be staggering. Life in an institution is a reality. Bankruptcy a real possibility. Framed in this manner death seems preferable. But wait!  We must be ethical. We cannot just end this man’s life—he wife is pregnant for goodness sake. Sedation is lessened and the man is told the gravity of his situation. He wants to die. His family wants him to die. His wife recalls they were at a charity event helping paralyzed people and he was clear life using a wheelchair was not what he wanted. The respirator is turned off. The man dies.

What is missing? Stephen Hawking. Jean Dominique Bauby. Stephen Gleason. More than one board member of the grass roots group Not Dead Yet. The very real and significant possibilities of life as a vent dependent quad are never mentioned. No effort is made to contact anyone with a comparable disability. This is a one sided rush to a death. This man was not given a legitimate choice. Worse yet, this man’s autonomy is praised by those in bioethics. We were ethical. No, you were not. Bioethicists support the easy, simple idea death is preferable to life with a disability. I get it. I have been in a bed when under different circumstances I got similar advice from so called compassionate care giver. Let me tell you it is easy to die when you are paralyzed. When one expresses such sentiments a veritable cheering squad supports you. The opposite side of this reality, the decision to live as paralyzed man is frowned upon. The worse the paralysis the more narcissistic you are thought to be. A selfish and costly existence, a social burden, the representation of the limits of medical science. I suggest bioethicists, hell any bipedal person, talk to a few paralyzed people. This will not happen because somewhere along the line dissent became unpatriotic.  Advocacy in the realm of bioethics and politics is a dirty word.

Why the hell am I as a paralyzed man involved with bioethicists.  Most of the utilitarian philosophers want me and those like me dead. If I sound off base I suggest you google dear hunter paralyzed. Thousands of comments are easily accessible--in choosing death Bowers was a hero. In choosing life I am disparaged, disliked, and seen as an economic drain. My existence is deeply stigmatized. Dying is easy it is the living that is a bitch. 

Some People Just accept it. I Don't

Another paralyzed bride story has been published. This time the Denver Post has printed a story replete with an eight minute video and a number of photographs about a very attractive young woman who wants to walk down the aisle at her sisters wedding. Hard to imagine the Denver Post story is much worse than the previous paralyzed bride story I wrote about. How bad is the story? Let me quote the first sentence: For someone who was told she would never walk again, Mackenzie Gorden spends a lot of time thinking about shoes". The below photograph highlights this point.

The story in the Denver Post glorifies walking. Using a wheelchair is deeply stigmatized. Do not trust me--read for yourself; here is the link: http://www.denverpost.com/paralysis/ci_24406689/stepping-toward-hope-paralyzed-bridesmaid-defies-disability Lines such as the following are inherently demeaning.

"Patients are standing up and taking steps after years of sedentary life. Quadriplegics lean only on walkers to shuffle hundreds of feet".

"Golden retains the rail-thin figure of the dancer and cheerleader she was. But a girl can have many goals".

"Golden was 18 and looking forward to senior year. She had danced and cheered all over the state and was to captain her team on a summer trip to cheer in Hawaii. She was a nursing assistant and wanted to pursue a nursing degree. Shattered C5 and C6 vertebrae now clamped down on those dreams".

Goodness where do I start? "A girl can have many goals". This sentence could have been included in  a 1955 etiquette book for girls. You know a girl is supposed to support her husband, have children, and be a good homemaker. Paralyzed people are sedentary, quadriplegics shuffle their feet, Gorden retains here rail thin figure and a spinal cord injury clamps down on her dreams. This is not just bad. This is epically bad. The hook, of course, is tragedy. The heroine is the beautiful but crippled woman who refuses to accept the fact she will never walk again. Left unsaid is the fact she is a superior human being when compared to other paralyzed people that are lazy failures. The exploitation involved is extreme. The story is gender biased in the extreme. Does the fact Gorden can brush her own hair and put on make up seem worthy of noting? I think not.  Sex sells I suppose as the story also has a photograph of Gorden in a pool wearing what else but a bikini.

The framing of this story is dreadful. Worse yet, is that Gorden is at Craig Hospital in Denver. This is one of the leading institutions in rehabilitation for people with a spinal cord injury. I wonder about the reaction of health care professionals who work at Craig. Are they delighted by the story? Are they appalled like I am? To me, this story is a missed opportunity. There a few nuggets of great interest that reveal how far the treatment of spinal cord injury has advanced. Gorden obviously has an incomplete injury. In the olden days when I was paralyzed the American Spinal Injury Association had not as yet established the ASIA scale. Two sorts of injury existed circa 1978. Complete and incomplete. Those that fit into the incomplete category were exceedingly rare. Today,  spinal cord injury is broken into five categories and there really is a range of function thanks to advances in immediate post injury care.  None of this fits into the Denver Post story. The focus is on walking and walking alone. Reality however is different.  Apparently Craig Hospital has embraced locomotor based therapy.  The goal is not walking but rather mundane and serious issues associated with spinal cord injury: circulation in the limbs, bone density, pressure sores, muscle atrophy, obesity, and bowel and bladder function. None of this is sexy. This sort of discussion will not sell newspapers. Into this void we get yet another story of a paralyzed woman that wants to walk.

Most disturbing to me to me is Gorden's seeming dismissal of good advice from her paralyzed peers. They told to her move on with life, to focus on ordinary things like going to college. This advice is dismissed. Gordon is quoted as stating it is easy for them to say because they don't have a chance to walk again. This individualizes her disability and isolates Gordon from others. She also confesses to being annoyed with this attitude. I suspect she also feels in some way morally superior to her paralyzed brethren. Perhaps in time Gorden will have a more nuanced view of disability and spinal cord injury. Perhaps she will discover the real issue for a person that is suddenly paralyzed is far less physical than it is social. Despite great progress the physical environment is not designed with wheelchair users in mind. It is my hope Gorden will realize that life is sweet regardless of whether one uses a wheelchair or is bipedal. It is my hope she will learn that images of her mother lifting her and putting her in the passenger seat leave much to be desired.

I see this image and cringe. Craig Hospital has an exoskeleton and other high end medical devices of dubious medical benefit and Gorden is lifted in and out the car by her mother. This makes absolutely no sense. Why does she not independently drive a car or mini van equipped with a lift and hand controls? If I were a college aged person being lifted in and out the car by my mother would be the last thing in the world I would want to happen. Screw walking, I want to be independent. I am happy to give Gorden much slack. She has been injured less than two years. My problem is symbolic.  What message is being sent when it appears the entire point of rehabilitation is an effort to walk? What message is sent when time is spent walking in an exoskeleton and Gorden's mother wishes she had such a device at home? Again, this makes no sense to me. I would think with an incomplete injury the effort to retain or regain as much movement as possible is a critical goal.  But it appears to me the only goal is walking. I for one would like to know more about Gorden's plan for attending college. She wants to be a nurse and when she met a paralyzed physician she thought if he can get through medical school I can get through nursing school. Rather than focus on such typical goals.  I would like to also know how exactly she ended up at Craig Hospital? Was she selected because her injury was incomplete? If so, how does her care differ from a person with a complete injury? Are people with no chance to walk again deemed unworthy of rehabilitation? Are such people perceived to be failures? To me these sort of questions emphasize how little the readers of the Denver Post will get out of the story about Gorden. A waste of newspaper space if you ask me. A destructive waste of space as well.

Follow Up With Delta and Questions

I had a long talk with an employee from Delta. Profuse apologies were made and accepted. I am very curious though about one thing. I was told some passengers prefer the sort of straight-back I used. I find this hard to believe. The straight-backs I routinely use when I fly all have a cushioned seat. Given the width and short duration of use I do not expect much padding on a straight-back. I do expect the straight-back to be clean and have working straps. Curious I looked for images of straight-backs and came across the below.

 
Note the complete lack of straps. Imagine this straight-back with ripped canvas and dirty and add 20 years of use. That is what I had to use. The Delta agent suggested in the future if I am unhappy with the straight-back that I could ask to speak with the conflict resolution officer and not worry about the backlash of such a request. In an ideal world this is good advice. But we do not live in an ideal world. The fact is if I insisted on an appropriate straight-back and competent assistance the flight would have been delayed. This would undoubtedly have angered the flight crew and 160 passengers. Easy advice to give, hard to actually implement. This leads me to ask readers:

1. Would any paralyzed person prefer an unpadded straight-back with no working straps for torso and legs?

2. Has any paralyzed person ever knowingly delayed a flight by insisting on straight-back with straps that work, some padding, and competent assistance?

3. In recent years has service getting on and off the plane become significantly worse?

Over the years I have worked with a few conflict resolution officers with mixed results. I have also noted that assistance on and off the plane since it has been farmed out to the lowest bidder has deteriorated. I would love to know what other people have experienced.

Unpredictable: Flying when Using a Wheelchair

I spent four days at the American Society for Bioethics and Humanities (ASBH) meetings in Atlanta. I returned to Syracuse physically and intellectually spent. Four days at an academic is too much for me. The night I got home I slept 11 hours which is extremely unusual. Flying to and from Atlanta was its usual mixed bag. Syracuse airport is small but clean. Amazingly, it is filled with employees that on the day I traveled were good at their job, polite and respectful. I got through security and boarding without a hitch. I wish I could say the same thing about Atlanta. Atlanta was terrible leaving and departing.

Arrival in Atlanta: Remarkably getting on and off the place on the flight to Atlanta was typically slow, first on last off. I find the wait upon arrival frustrating. Why are people in the back of the plane so slow departing?  Is there a party back there with free drinks? And more to the point why am I forced to wait until the plane is empty, that is every passenger departs the plane. Sorry for the aside. I get off  the plane and think all is well. My colleague and I are happy and head toward the elevator. We find a line--a long line. Atlanta airport has a single elevator for people that use a wheelchair. Yes, one elevator. The line I crankily and rudely observe is filled with people that most likely can walk a good bit and I speculate many do not need assistance. After I make this observation my colleague looks at me askance. She is correct, I of all people should have a nuanced understanding of disability. I apologize and acknowledge my comment was rude but remain deeply annoyed by the wait. I cannot help but note at least one man left the elevator line for the escalator nearby. I hope I do not sound petty. Think about my experience in terms of time. I boarded the plane first and exited last. This added about 45 minutes to one hour to my travel time. Now I have no choice but to wait for the elevator adding about 20 minutes to my travel time. I would guess in total an hour was spent in the Atlanta airport merely waiting. Sadly, I would deem this an uneventful trip.

Departure  in Atlanta: I get to the departure gate with my colleague who has experienced her first disabled travel related perk. We did not wait on the very long line TSA security line. The line appeared to be a 90 minute to two hour wait. I have been on that sort of line and it is not fun. As a result of not waiting on the security line we had time to eat, use the rest room, and get to the gate early. The usual pre-boarding starts and all appears well until I look over and see the straight-back. I have not seen a straight-back that old in more than 20 years. I regret not taking a picture of it on my smart phone. The straight-back should have been retired a decade ago. It was dirty. The canvas was badly worn and ripped in spots. The seat was not padded and had a deep depression. I was very worried I would fall through the seat when I transferred onto it. There was no strap to keep my legs on the chair (I have really long legs). My colleague thought the straight-back looked like a torture device. Getting on the plane was going to be risky and painful. I asked if another straight-back was available. Yes, but it would take a long time to find and would delay the flight. Every straight-back thanks to the Air Carrier Act is supposed to be padded. In the past too many paralyzed people have been hurt because of a lack of padding.  So there I am in Atlanta--I can risk my health and arrive home on time but in pain or assert myself and insist on a straight-back. Only one of the two men that were tasked with getting me off the plane was competent. I thus ask my colleague if she can hold my legs and protect them from injury. Frankly, I was humiliated for being forced to ask my colleague for help. Thankfully I got to my seat and transferred without assistance or trouble.

What never ceases to amaze me is the fact I would consider the round trip relatively uneventful. I arrived back in Syracuse in one piece as did my luggage and most importantly my wheelchair. I also arrived in pain. My right hip was on fire for many hours. It was like a person had a blow torch on my hip. Two very stiff drinks and a long sleep relieved my pain. But it was not the physical pain that bothers me. Why is acceptable for people that use a wheelchair to be limited to one elevator in a major international airport? Long lines waiting for the elevator are inevitable. I have no doubt this is a well-known issue. Why was a dilapidated straight-back still in service? Why was I forced to either  delay a flight or risk my health? And did I really have a choice? What if I did indeed request an appropriate straight-back? I have no doubt this decision would have been met with hostility. The fundamental issue is not the risk and inconvenience I endured. Access for people with a disability is perceived to be a "problem". The idea my civil rights were violated never crossed the mind of the airport employees.  Traveling highlights a myriad of social inequities that are deeply ingrained in American society. The airline merely takes this hostility to a higher and obvious level  I wrote a pointed email to Delta and based on the reply I may or may not file a complain with the DOJ. I asked at the time and in my email to Delta to remove the worn out straight-back from service.  I will keep readers up to date on what transpires.

An Ode to My Wheelchair

Penny Wolfson, author of Moonrise, is writing about the history of the wheelchair. I find her work fascinating. Remarkably, no definitive book about the history of the wheelchair exists. Wolfson's research is historically oriented. I find the photographs of early wheelchairs Wolfson has found fascinating. It is not the wheelchair that I am interested in. Rather I wonder what did the person think of their wheelchair.  Did they consider the wheelchair as an empowering device? The early wheelchairs I assume were made one by one with a specific person in mind. One image and person sticks out as particularly interesting. Stephan Farffler circa 1655, a German watchmaker made the first self propelled wheelchair.

Using a little imagination and adding contemporary materials the above photograph could easily be reconfigured to be a modern day handcycle. Imagine the box in front is transparent. I see no reason a watchmaker could not have a set r complex gears inside the box. Streamline the seat, lower everything to the ground and I can readily imagine my handcycle.

Today, wheelchairs are mass produced and the vast majority are poorly designed. For the last two years I have been looking for a light weight wheelchair and have failed to find something I like and can afford. I am discouraged but hopeful. I think we are on the cusp of developing radically new and improved wheelchairs. I was supposed to be in New York tomorrow acting as a respondent to Wolfson who is presenting her research at Columbia.  Below is my reply to her presentation. It might be an awkward read as I react directly to Wolfson's work.  But I still think it is worth a read. My focus is on the rigid frame wheelchair and why I am optimistic about the future.  I am very interested in what some old time crips can add to the development of rigid frame wheelchair in California circa 1980.

In September 2010 I found a huge wound on my hip. It appeared suddenly. For the first and only time in my post spinal cord injury life I had a severe, grossly infected wound. Such wounds can and do result in death. I was lucky to have survived. I spent four weeks in the hospital before I was medically stable. I was tethered to a wound vacuum for 6 months.  I did not sit up for 10 months. I was bed bound for more than a year. It took another year to recover from spending so much time in bed. This experience altered my life. After meeting with Penny Wolfson and discussing her project about the history of the wheelchair memories of my year in bed flooded back. One thought dominated: how did I survive a year without using my wheelchair?

As I write these words my life is normal--or what passes for normal when you are paralyzed. My black labrador Kate is by my side and her body is leaning against my wheel. This is a far cry from a ritual she established with me when I was bed bound. Every morning when I woke she greeted me with great enthusiasm. Tail waging, excitement coursing through every fiber of her body she let me pet her head. She then would look at me and turn her head and stare at my wheelchair. Her head would go back and forth  several times. The message was not subtle: she wanted me to get up and into my wheelchair so we could play. Sadly, I disappointed her every morning. This ritual made me miss my wheelchair. Despite being paralyzed for over 30 year it was not until 2010 that I realized my wheelchair was an extension of my concept of self. I use self here in a Goffmanesque framework. I was not the only being that was miserable. In many ways my dog and I were in mourning. The pain felt was visceral. I missed my wheelchair. I missed the power it gave me to be independent. I missed the feel of upholstery against my back. I missed pushing against the tires and the intimate knowledge I could discern with a single touch.  I missed the speed with which I could move. I missed the dirt I collected during the day on the wheelchair frame. Kate missed my tires and the smells they picked up that are utterly fascinating.

Few paralyzed people have written about the relationship between their body and wheelchair. In John Hockenberry’s memoir Moving Violations he wrote about how he felt empowered by his wheelchair on a gorgeous early morning day when crossing the Brooklyn Bridge. Simi Linton in her memoir My Body Politic wrote about her cherry red power wheelchair she named Rufus. Alice Shepperd of Axis dance company contends her wheelchair is an extension of her spine. For me, Wolfson’s photographs reinforce the human capacity to imagine and adapt. When I see the photographs Wolfson has amassed my soul is warmed. I am part of a vibrant history few know about. I feel less alone knowing others have adapted. I am just one of a cadre of strong willed individuals that has been empowered by a wheelchair. My overwhelmingly positive assessment of wheelchair use is well out of the norm. For most people, wheelchairs are a poor substitute for bipedal locomotion. A wheelchair is a thing, a product, an inanimate object. Worse yet, people associate a wheelchair with inability and physical incapacity. Symbolically wheelchair use is a sign of weakness, disability, and more than once I have heard others describe it as a portable social isolation device. This is in part why I do my best to combine scholarship and activism. Too many lives have been lost or  needlessly compromised because of mere physical difference. Frankly, I love my wheelchair--every piece of it. It is a part of me, akin to my leg or arm. I cannot envision life without it. It is a vibrant positive part of who I am. When it breaks, I am devastated--how could such an integral part of me fail. Such mechanical failures are very rare, most easily fixed. Such thoughts remind me of how I feel when I am sick. How dare my body malfunction.

My obvious and intense feelings for my wheelchair reveals a divide exists between those who use a wheelchair and those that do not. This cultural gulf is the size of the Grand Canyon. I firmly believe there is a disability culture as unique and fascinating as any other subcultural group. Not all crippled people are members--some are not happy nor do they embrace disability culture. The reasons for this are many and varied starting with the overwhelming stigma associated with disability and wheelchair use. Some of us see through this cultural bias--we understand it for what it really is--bigotry plain and simple. 

I hereby and publicly acknowledge my love for my fire engine red wheelchair with its plain black upholstery, one brake, four wheels, worn black duct tape, excellent hubs, and superb ride. How does a paralyzed person explain the connection with their wheelchair? More to the point, how does one put soul into the care and development of a wheelchair? I for one believe we need to perceive the human wheelchair relationship as a unique form of symbiosis.  I am not suggesting as transhumanists would that we merge technology and the human body. Rather I would urge people to forcefully reject the symbolic associations routinely made about wheelchair use. When good design meets disability the results are remarkable--beautiful even. But good design very rarely meets disability. In fact I would argue bad design and disability is the norm.  For many years I have wondered why can’t disability be fashionable? Why are so many products produced for people with a disability ugly design disasters? The answer to these questions are as simple as they are complex. People with a disability existence is not valued. The problem is not technological but rather social. 

The photograph Wolfson showed of Stephen Farffler’s wheelchair circa 1655 is a perfect example of empowerment and excellent design. I see that photograph and I am filled with questions about Farffler’s life and ability to adapt. The wheelchair he invented and used was a precursor to modern handcycles used by many paralyzed people today. Farffler was centuries ahead of his time and yet is largely unknown because we do not teach or value the history of disability.

Wolfson’s photographs also reaffirmed my intense dislike for Everest and Jennings, the foremost wheelchair manufacturer from the 1930s to 1980. Harry Jennings invented the first folding wheelchair for his friend Herbert Everest, a paraplegic. Unlike all other wheelchairs manufactured at the time, E&J models were made of tubular metal. The wheelchairs they made folded and were designed to fit into the trunk of a car.  This revolutionary design enabled Everest and Jennings to go out together during an era when people with a disability were simply not seen in public. The audacity and creativity of E&J original design was tarnished by greed. For fifty years the company enjoyed a monopoly on the wheelchair industry and rigged wheelchair prices. In the late 1970s the Department of Justice busted the E&J monopoly via an anti trust law suit. This is when I entered the picture as a paralyzed man in 1978. I owned a number of E&J wheelchairs when I was first paralyzed. The wheelchairs produced by E&J had not been substantially modified since 1930. These wheelchairs were ugly and antiquated. They broke down on a regular basis.

With no options paralyzed people adapted. Innovation did not come from corporations but rather a critical, though very small, mass of people in California. Between the late 1970s and mid 1980s wheelchair design and construction were revolutionized. The rigid frame wheelchair was invented. These wheelchairs were manufactured one at a time.  The rigid frame developed a cult like following. They were revolutionary in that the design was simple and made for rugged use. Early testing of the rigid frame often involved dropping the frame off the roof of a building or throwing it out of the back of a car going 60mph.  The frames did not break. Ideas were borrowed from aviation, motorcycle, and bicycle industry. What really set the rigid frame wheelchair apart was the fact they were made with a heart. That is they were designed with the user in mind. And that user was an active man or woman. A person that was going to have a typical life. 

Paralyzed people were at the forefront of development.  The wheelchairs were cheap--in 1980 they sold for $500 at most. Dozens of companies popped up on the west Coast. Most went out of business. The business model utilized was terrible. Many wheelchairs were sold at a loss. Dozens if not hundreds were given away. The man that made my wheelchair frame 30 years ago had a unique business model. A person was expected to buy not one but two wheelchairs. One wheelchair would be held in reserve by the company--ready to ship at a moments notice. At a prescribed time of year the wheelchair would also be refurbished. New paint, bearings, upholstery, and tires installed. This concept failed and the company went out of business. 

The rigid frame wheelchair caught on quick even though initially all health insurance companies refused to pay for them.  Paralyzed people knew they were life altering and somehow came up with the money. Through the wheelchair basketball community young men such as myself spread the word. In less than five years orders started to flood into the companies that made rigid frame wheelchairs. They were not equipped to handle the scale of orders received. One company, Quadra, approached E&J. They were willing to make a deal with the devil. In 1979 E&J annual sales of wheelchairs amounted to $100 million. They had the ability to handle the manufacturing of rigid frame wheelchairs.  Quadra approached E&J and a meeting was held. Jeff Minnebraker and Brad Boegel brought a number of rigid frame wheelchairs to E&J. They were enthused and explained in great detail why the rigid frame was a revolutionary design. At the time use of aeospace technology was well out of the norm. The use of quick release axles had never been used on a wheelchair. These men expected E&J would be as excited as they were. E&J executives literally laughed at them. The attitude at E&J was paternalistic. Two paralyzed men could not possibly come up with a better design than the largest wheelchair maker in the world. No offer was made and E&J continued making substandard products. Within five years of this meeting E&J would go out of business.

E&J failed because they did not value contemporary design nor did they satisfy the needs of their consumers.  They also failed because they were firmly committed to the medical model of disability. When the first rigid frame wheelchairs were manufactured a significant cultural cultural shift took place at the same time.  The first users of these wheelchairs utterly rejected to work with durable medical goods companies. Rigid frame wheelchairs were sold at bike shops up and down the west coast. Only one wheelchair dealer, Abbey Medical in Fresno, would sell rigid frame wheelchairs. Fresno’s proximity to Berkeley, the home of the disability rights movement, was an important variable.  Only one person on the east coast sold rigid frame wheelchairs. It was clear to all active wheelchair users the rigid frame design would very quickly replace folding wheelchairs. Marilyn Hamilton, a paraplegic, realized the business potential of the rigid frame wheelchair.  She bought Quadra and other  makers of rigid frame wheelchairs. She called her company Motion Designs and made the first mass produced rigid frame wheelchairs called quickies. Hamilton was a shrewd business woman who professionalized the wheelchair industry. That is they worked outside the medical model of disability and were wildly successful. She sold her company to the giant multinational corporation known today as Sun Rise Medical. Quickies continue to be sold to this day but have a terrible reputation. In fact Sunrise Medical is the modern day equivalent of E&J. 

In looking at the evolution of the wheelchair in general as Wolfson has done and the rigid frame wheelchair as I have it is my impression that empowering design, truly revolutionary change, requires a complex series of events to take place at the same time. I am particularly hopeful because a unique generation of wheelchair users are coming of age. I refer to these young men and women as post ADA cripples. This is the first generation of crippled people that have had close to typical life expectations and they will demand wheelchairs that match their lifestyle just as I did back in 1978. From a technical standpoint, we are at a cross roads as well. The introduction of light weight but strong carbon fiber materials are being used for the first time by wheelchair companies. One such design from Sweden, the Panthera X, weighs in at less than 10 pounds. It is the lightest wheelchair ever manufactured. It is also the most expensive manual wheelchair manufactured (cost exceeds $10,000).  It is my hope innovative designs such as the Panthera X is a sign of what is to come. 

My concern is socio-economic: are we as a society willing to invest in people with a disability? That is are we willing to provide people with a disability the very best and well designed empowering devices? I also worry have we replaced one disability stereotype with another? Previously we have associated wheelchair use with physical infirmity and the elderly. Now I wonder do we associate wheelchair use with sporty young people. I would argue we need to offer a wide range of choices for people that use a wheelchair. Just as we have a dizzy array of choices for chairs we purchase for our homes I see no reason we cannot offer the same unlimited number of choices for people that need to use  wheelchair. I even have a name for this concept--chairwear. Sadly, I am not that clever. Chairwear is an idea suggested by Graham Pullin that I think has great potential.