Disability and the Cultural Perception of Technology

Wheelchairs are n0t cool. Wheelchair use carries no social prestige. Wheelchairs are firmly associated with old age, paralysis and disability. I suspect people with no experience with disability think of two polar opposites in regard to wheelchair use. An elderly and frail person or a young paralyzed male in a sporty wheelchair. These are two stereotypes on opposite sides of the spectrum that are created with no foundation in fact. No thought, none, is given to the technology involved in making a rugged dependable wheelchair. No one that sees me thinks wow, that is one well designed wheelchair. I find this remarkable in that I have witnessed extended discussion about bikes, skis, cars, and electronics of every type. Not once has a person ever engaged me in a discussion of wheelchair design. I find this odd. Since the first rigid frame wheelchairs were invented in the 1980s wheelchair technology has borrowed liberally from the motorcycle and bicycle design. Wheelchairs, bikes and motorcycles have much in common. Spokes, wheels, brakes, tires, powder coated parts, gripping mechanisms to mention but a few obvious shared components. In spite of the similarity wheelchair use continues to carry significant social stigma. Nothing positive is associated with wheelchair use. One simply does not associate wheelchair use with fitness, mobility, and ability.

My views about wheelchair use are radically different. I love my wheelchair. Really, I do. I have not named my wheelchair as some paralyzed people do. Simi Linton, a noted disability studies scholar, for instance refers to her cherry red wheelchair as Rufus. When I see a person using a wheelchair go by my eyes go immediately from their face to their wheelchair frame. I want to to see dirt. I want to see scratches, slightly bent spokes, worn tires, and faded upholstery. I want to see signs of hard use. Spotless wheelchairs worry me. Does this person in a spotlessly clean wheelchair ever go outside? I also look at the wheelchair frame and fit. An active paralyzed person sits upright and is correctly seated. I then look at the wheels--very small front wheels are most common. I hate these small wheels. I know they are practical in an urban environment. Next, I look at the rear wheels and rims. No matter how well rear wheel rims are powder coated they take a beating. Well worn rims are a sign of hard use. Like bike wheels, rear wheels on a manual wheelchair have been revolutionized by technology. Good rear wheels stick out like a sore thumb. In short when I see a wheelchair I think action. I think work. I think does that wheelchair empower the person using it. All this goes through my mind in a flash.

Wheelchair technology has in my estimation stalled and has been stalled for more than a decade. Wheelchair design was revolutionized in the 1980s. For the first time since the 1930s wheelchair design advanced by leaps and bounds for a brief period of time. Many new companies were formed and much to my delight Everest and Jennings went out of business. Somewhere along the line wheelchair manufacturing became a big business. The innovative small companies that popped up in the early 1980s were bought out by large corporations or simply put out of business. Fewer and fewer companies manufacture wheelchairs. Giant companies such as Quickie have a monopoly on the market. Very few people like me exist in that I opted out long ago. I refuse to deal with any wheelchair company. I farm out any work my wheelchair needs to local small businesses. They treat me with respect and are happy to have my business. Not only have I saved a small fortune but the people that work on my wheelchair think it is cool. They get the technology. They get why my wheelchair cannot break. They get why all parts are internal. Every single nut or bolt has a reason to be on my wheelchair. The welds on the frame are elegant. The sealed hubs are top of the line. My wheelchair is simple in the extreme. I love how it looks--dirt and all.

The lack of respect wheelchair use and technology receives makes me crazy. Why can others not see what I see? I see a wheelchair and think there goes a person that has adapted. I think we people that use wheelchairs are a testament to the way we humans have adapted since we have been bipedal. I find such individuals endlessly fascinating. I also wonder when if ever we will be respected? I doubt that will happen in my life time but one never knows. And when discouraged I think of how we Americans love technology. Maybe, just maybe, some day people will see what I see. This is already taking place in the prosthetic industry. People like Hugh Herr and Aimee Mullins are constantly in the news. I read about how we are on the cusp of creating artificial limbs that are without question superior to our biological limbs. This amazes me. Yes, the technology is cutting edge but it is the social response that has amazed me. When kids and adults see prostheses they do not think tragedy or disability they think cool. People that know nothing about disability are drawn to prostheses. I just read an article at CNN.com that waxed poetic about protheses. Scott Summit who designs coverings for prosthetic limbs wrote:

"I feel that any product that is medical or corrective becomes a necessary augment to the body, and therefore, should live up to that role. It should respect the user, and offer to them all the quality of living and self esteem that it is able. Its success should be measured in terms beyond merely the pragmatic, but should aim to enhance the user�s quality of living in every way possible."

I hope I live to see the day when someone comes up to me and asks me a question no one ever has: How does your wheelchair enhance your quality of life? For that is exactly what it has done--at minimum. My wheelchair makes my life go. No wheelchair, no life. Crawling simply does not work. My wheelchair is a great gift, truly empowering technology. I cannot imagine life without it nor do I want to.

Huffington Post and Bungie Jumping

The Huffington Post under the section "good news" has a story entitled "Paraplegic Woman Goes Bungie Jumping". The video above is evidence that yes indeed "paraplegics" can bungie jump. The article begins "Thrill seeking doesn't stop when you lose the use of your legs". This is news? Why would being unable to use your legs stop one from seeking thrills? Paralysis may limit one's mobility but that is easily negated by a wheelchair. Has the Huffington Post never heard of adaptive sports or the paraolympics? And more to the point why was the woman, the human being sitting in her wheelchair, never identified by name. She is "paraplegic woman". Excuse me but this is about as dehumanizing as you can get.

I will admit I never heard of a person bungie jumping from one's wheelchair. The group that made this possible is Canadian group 9Lives Adventures. Sign me up! I would love to do this. I can only imagine the adrenaline rush. And the leap in faith! Wow, over the edge you go, total trust in your gear. This is worth looking into!

Dueling Editorials: Singer Versus Smith and Scary Revelations

Today the Guardian followed up its story about the so called Ashley treatment with not one but two editorials. First up was Peter Singer who predictably was supportive of the Ashley Treatment. The second editorial was written by SE Smith whose work I am unfamiliar with. She was staunchly opposed to the Ashley treatment. I urge people to read both editorials.

Singer's views have not changed since he came out in favor of the Ashley treatment in 2007. In his editorial no new ground is broken. I find both editorial distressing--the tone harkens back to 2007 when news of the Ashley Treatment spread across the internet and went viral. Back then there were two schools of thought--those for and those against. Both hurled vitriol at one another. And to be blunt, I had a hand in this. At the time, I was stunned and threatened by the story and the actions taken by a reputable hospital. It took years for a more civil discussion to emerge. Here I refer to the Seattle Working Group that published a consensus piece in the Hastings Center Report. Clearly the effort to find common ground has utterly failed if today's editorials are any indication of the way people are thinking. I find this distresing but not half as chilling as another story published by the Guardian today. Here I refer to "The Ashley Treatment: Eric's Story" by Karen McVeigh. I worry the shocking revelations in this story will be lost as the pointed editorials will get all the attention.

What shocked me in "The Ashley Treatment: Eric's story?" Not the over the top effort to pull at readers heart strings. When it comes to disability this is an old well worn theme. I have grown accustom to misleading and offensive comments such as "Erica has a normal life expectancy. But her body will never grow to adult size. The treatment, which included a hysterectomy to arrest the onset of puberty, has ensured she will remain � physically � a child forever." Eric is a child like Ashley--a person with a profound cognitive and physical disability who was subjected to the same therapy. Erica's parents were advised by Ashley's parents who encouraged them to be tenacious and insistent. Erica's parents believed that the Ashley Treatment was the perfect solution for their pillow angel. In 2007 they found a physician willing to help. In 2007 Erica had a hysterectomy and breast buds removed. After surgery she was then given high doses of estrogen that attenuated her growth. According to Erica's mother "The hysterectomy was the one bit I really wanted to do. We were adamant that she didn't deserve to deal with a period all her life, because of the pain and the hormonal changes. She is not verbal and can't tell us what hurts." All this is not new regardless of whether one is for or against the procedures. This is what took me aback. I quote:

"When they approached the gynaecologist for a hysterectomy, Erica's parents asked if they had to apply for a court order, but were told they didn't need one.
"Nobody questioned it," said EM. "The gynaecologist said: 'I'll do it. When do you want to do it?' We were surprised it went as smoothly as it did. We thought the insurance company would call but they didn't. My son asked whether we needed a court order. She said 'Oh, of course not, you want what's best for your daughter'."

Erica's mother went on to state:

"Before the hormone treatment began, Erica's parents had to go before the university's ethics committee. They took Erica along with them.
They told us they would like to develop a protocol for this. There was a panel of four. We said we know she's not going to get better. We want to keep her home and give her what she needs. I remember my husband saying one day she might have to have a male caregiver and how much more vulnerable she was going to be.
It's hard to talk about it, but things happen and at least if anything happened there would not be a pregnancy. It would give her much more dignity. We said it's not for all disabled children, I remember them sitting back and smiling and saying: 'This is right for your daughter.' One of them said how much her smile said about her."

Nobody questioned a child having a hysterectomy. The parental request went smoothly. Insurance covered it without balking. This reinforces what I have been hearing for the last few years from physicians, ethicists, lawyers and disability rights activists: the so called Ashley Treatment is quietly being done. No ethics review. No legal review. No follow up research. No long range studies. Nothing. This scares me to death. How can this happen? To me the answer is simple as it is dangerous. Children with profound cognitive and physical disabilities are not fully human. They do not share same rights as children that can think and move within a broad spectrum we deem normal. These children have no bodily integrity--their bodies can be changed at the whim of parents and physicians. These children do not warrant legal protection.

Erica's parents did not need to leave the United States to have the procedures done. They were performed at the University of Minnesota. If what Erica's mother said is correct the university is trying to develop a "protocol" for the Ashley treatment. This is news to me. The justification provided by Erica's mother dismisses any argument disability rights activists, scholars and ethicists have put forth noting: "People don't understand that we are talking about a small percentage � just one percent of the disabled population with disabilities like Erica's � who would be candidates for this treatment. It's not for everyone. There are grey areas."

Where did Erica's mother get the figure of 1% from? Ashley's parents. The one percent figure does not make me feel any better. So it is okay to forever change the bodies of children with profound cognitive and physical disabilities but not the other 99% of children. What does this say about our cultural perception of disability--again it is as simple as it is complex. People with a disability are not fully human. They do not warrant the same protections as other children. By extension, I cannot help but wonder do adults with disabilities not warrant care? Are we too subject to a different set of rules, standards and civil rights? People like Singer will reply I am comparing two separate populations of people. Children like Ashley and Erica are part of the 1% and as such can be treated differently. No harm will come to me and other people with a disability because we can express ourselves and defend our rights. This argument falls flat for me. We may have spent the last 40 years enacting legislation to protect the rights of people with a disability but there is no social mandate for such laws. Given half a chance, schools, corporations, universities, hospitals and every institution I have ever come across will break the law whenever humanly possible. As my son once told me long ago "Dad, no one cares about people with a disability". For me, the Ashley Treatment demonstrates this sentiment my son recognized at the age of six. Academics call it ableism. I call it bigotry. And in America bigotry is alive and well.