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Thursday, October 24, 2013

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. 


Lynn said...

Great post, Bill -

I was appalled to hear recently that Medicare is talking about changing to a rental-only reimbursement model for power wheelchairs. What's next - rental prostheses? "Sir, we'll need your signature on this month-to-month lease agreement for your leg"...? Most people would recoil at how ludicrous such a statement sounds; yet somehow for a wheelchair, it's OK?

I wish there were a way to get the idea of a wheelchair as just another type of prosthetic device into the public consciousness. There was, of course, a time when prosthetic limbs carried the same kind of stigma that still clings to wheelchairs today. But they now seem to have transcended that history to a great degree, and people are entranced by the "coolness" of both the cutting-edge technology and the evolving design aesthetics that go into the various designs that are now available (for a breathtaking price, of course). I hope a similar transformation of perception is possible with wheelchairs. Our rather narcissistic species' undue attachment to having our devices mimic the form-factor of our own bodies must be the stumbling block. Just a *little* less cognitive rigidity in the shared narrative would go a long way!

Middle Child said...

You always touch my heart with your essays. After Don was killed it was easy for me to get rid of the air mattress, a few tears when i wheeled the commode into the van - but it took me two years before I could part with his wheelchair - till one day i realised how selfish I was beng, and that someone with need could use it and this would give them independence. It was old and unreliable - we'd bought it second hand and it had a habbit of jerkily stopping which we had fixed - that meant two spills out of the chair which were very upsetting for us both. But you explain exactly how don felt - he didn't hate the chair as people may have assumed - it was his independence and we too had a doggie who loved to be with Don as he travelled about. Six months spent in bed at home made that chair look pretty good to us both. Sometimes I don't know how Don kept his humour through it all - although it was pretty black humour most of the time - which suited me... One day i ran into a freind of ours, Tom Kennedy, who as well became a Quadriplegic just after don. he knew a lady who needed a chair and Tom had most of the use of his hands and was able to tweak certain parts of the chair to suit her. I admit it broke my heart to see it going down the driveway, and I still have the big green sheepskin that used to sit behind him - I just couldn't part with that... one day maybe as it is in pretty good order.

Unknown said...

My grandma loved her wheelchair! That might sound crazy, but she absolutely loved it! She got so attached to it and she had so much fun it. It's a good thing it was a sturdy old thing. She put it under a lot of pressure.

Gerald Vonberger |