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.

The Ashley Treatment: AD in the Guardian

AD is an acronym for Ashley's dad. Yes, Ashley's dad is in the news. The Guardian has published not one but two articles about the Ashley Treatment. I suppose they did not get the memo that the Ashley Treatment is now referred to as growth attenuation. Regardless, for all those interested I urge you to read "Ashely Treatment on the Rise Amid Concerns from Disability Rights Groups" and "The Ashley Treatment: Her Life is as Good As We can Possibly Make it" published in the Guardian today.

Over the weekend I will deconstruct these articles, in particular the long email exchange with AD. This post is a tease of sorts. The Guardian will be publishing another story tomorrow with another parent that has her child subjected to the Ashley Treatment. I will however provide one short quote that indicates a great divide between those that see disability as a social malady and those that consider disability to be a medical condition. AD noted the following:

"The Ashley treatment has made her far more likely to be comfortable, healthy, and happy. Given the limitations imposed by her medical condition, her life is as good as we can possibly make it."

I have no doubt Ashley's parents lover their daughter very much. I am delighted they are providing her the very best care. However, I am taken aback by the constant medicalization of her disability. Phrases such as "given the limitations of her medical condition" are unfortunate at best. Ashley has a physical and cognitive disability, a far cry from what I think of when I hear the words medical condition. As near as I can tell, Ashley is medically stable and has been for many years. She takes only one medication. I find AD to be troublesome. I cannot begin to understand why he has rejected each and every argument presented by disability studies scholars and activists. I cannot understand why he appears to think Ashley is singularly unique. There are many parents with children similar to Ashley who would not consider growth attenuation. Why the family has utterly rejected a social model of disability and embraced a medical model is a mystery. Worse yet, AD reports what I have been hearing for the last few years. Growth attenuation has gone underground. It is quietly being performed all over the country and abroad.

That's it for now. My first teaser post. Stay tuned for more.

How to Die in Oregon

I finally got to watch the critically acclaimed documentary How to Die in Oregon. Based on reviews I read, I knew the documentary would be heavily skewed in favor of assisted suicide. However, I thought there would be a modicum of dissent--a few people would be given the chance to speak about why they are opposed to assisted suicide. I was wrong. The film is grossly biased in favor of assisted suicide, specifically in Oregon, the first state to pass so called death with dignity legislation. Compassion and Choices, the former Hemlock Society, figures prominently in the film. In fact I would go as far as to maintain the documentary is akin to an info-commercial for Compassion and Choices. The documentary leads the viewer to think assisted suicide was the one and only option available for those nearing the end of their life. Those opposed, Randy Stroup for instance who was denied coverage for chemotherapy, do not come across as reasonable. Statements made by Stroup such as "The guy who wrote this letter should be sent to prison for life" are not helpful.

Reviewers gush about How To Die in Oregon. For example Jeff Shannon in reviewing the documentary wrote that it was "one of the most historically significant documentaries of this still-young decade." All praise for the documentary is based on a simple premise that is not questioned: we humans have something called dignity and we want to control our lives when we are perceived to be losing said dignity. What is not addressed or even mentioned is what exactly is dignity. To me, dignity is a concept that is supposed to be utilized when moral and ethical conundrums arise that call into question basic human rights. Dignity is an extension of what we Americans love to celebrate and fiercely defend--independence. We want to control how we end our life. On the surface this makes sense. However, delve deeply into the debate surrounding assisted suicide or death with dignity and problems abound. Autonomy is tricky business.

By far the best and longest review of How to Die in Oregon was written by Jeff Shannon in the Chicago Sun-Times in May 2011. Shannon is a quadriplegic, 32 years post injury and resides in the Seattle area. In reviewing the documentary Shanon wrote about his experience as a paralyzed man encountering an expensive and inhospitable health care system:

"I've shared these personal details because my life experience -- and my near-death experience -- have convinced me that I want to exercise control over how my life ends. I want to be the one who determines when "my time" has come, even if that means dying naturally or, as some might prefer to phrase it, "letting go and letting God." I may not have a terminal illness now or later -- and I think it's appropriate that non-terminal paralysis legally disqualifies me from the option of "physician-assisted suicide" -- but I'll know when my "quality of life" has reached its lowest ebb. I've almost been there already, so I'll know, with absolute certainty, when I've truly reached that limit. I won't allow anyone else to determine what "that limit" is".

Shannon, who I met last summer and had a long chat with on the Seattle waterfront, and I share much in common but diverge in that I do not believe we are ever as autonomous as he would like to believe. Shannon seems content with the idea he will not be considered terminally ill or lacking a dignified life as a direct result of his paralysis. I do not share this sentiment. In fact I would argue in a profit driven health care system people with a spinal cord injury and others with a profound disabilities are an at risk population. By at risk I mean we may be encouraged to end our lives with "dignity". Shannon and others in favor of assisted suicide would skoff at my concerns. I would maintain John Kelly of Second Thoughts, a Massachusetts based organization against assisted suicide is correct in noting that "These bills sound good in some kind of a perfect-knowledge fantasy universe, but when we get down to real life they become a disaster".

Like it or not, the assisted suicide legislation in Oregon has had a sweeping influence on how Americans die and perceive death. Washington passed comparable legislation, Montana allows assisted suicide as a result of the Baxter Case, and other states are debating the matter (Vermont and Massachusetts). No doubt our health care system handles death and the end of life poorly but assisted suicide legislation is not the answer to improved end of life care. More to the point why do people choose to die? According to the Oregon Health Division 2011 report on Death With Dignity people sited the following:

Losing autonomy
Less able to engage in activities making life enjoyable
Loss of dignity
Losing control of bodily functions
Burden on family, friends/care givers
Inadequate pain control
Financial implications of treatment

I have experienced each and every statement above. Paralysis limits my autonomy. I cannot engage in activities I once enjoyed. I have tenuous control of my bodily functions. I have been a burden to my family and friends. I have experienced gut wrenching pain. I have spent a disproportionate amount of money on my health care. What is mising from this litany of disaster? Dignity. I have never lost my sense of dignity. Not once. But that is only how I think about dignity. There is another side to dignity--how am I perceived by others. Society has what I call selective blindness. It is very hard not to notice a wheelchair but society seems adept at ignoring the human being sitting in the wheelchair. Avoidance, stares, awkward social encounters, demeaning attitudes are all within my realm of daily experience. My self esteem takes a hit at every social transgression but I maintain a firm grasp on my dignity. When I assert myself as a person with dignity, question others when my civil rights are questioned or ignored, I win few friends and make many enemies. But that is my life, a life I accepted long ago. Who else can I rely on? Not my friends. Not my neighbors. Certainly not the government. How very American of me! Autonomous to the end. Well, sort of. Again let me quote Shannon to highlight where we diverge:

"I watched "How to Die in Oregon" twice, both viewings intensely informed and influenced by my own experience, my own life and my own opinions about how I prefer to see it end. As a quadriplegic faced with new and serious challenges, I don't feel threatened by Richardson's film because I'm not afraid of dying. I've never felt that I was "better off dead," and because I haven't "reached my limit," I have no desire, legally or otherwise, to hasten my demise. To these eyes and ears, there's nothing in "How to Die in Oregon" -- or in Oregon's law -- that suggests that I should do so."

I hope Shannon is correct. Really I do. But I do not share his sense of well being nor do I think people that viewed the documentary are well informed. Unlike Shannon, I feel threatened. In fact every time I see a physician I have never met I am fearful. I would never dream of entering an emergency room. Simply put, every time I access the health care system I am aware my presence is not wanted. I fear someone, a highly educated physician or health care worker, will decide I have suffered enough. In this scenario I will be denied life saving therapy a person that walked in the door would be given without thought. I am not exaggerating. I experienced this first hand. I have a paper coming out in the Hastings Center Report detailing my experience. I am unabashed in acknowledging my fear. It is very real and lives are at stake.

City of Steel

Blast Furnace No 4

Night falls. The dark seashore spits flame, burns with a million lamps. 

The clang and boom and roar of the mills never cease, never slacken�.

For this is a city with one urgent purpose.

Day and night, weekday and weekend, to make iron; to make iron into steel; to make enough steel. 

Steel for Britain. Steel from a dozen different lands. Steel for the world. 

Steel from Wales.




Description of 'City of Steel'- Port Talbot steelworks. From a publication by the Steel Company of Wales Limited

Steel Coil

Photographs by Dr Louise Miskell, Swansea University

Wales at Work

The Powering the World project recently featured on BBC Wales' Wales at Work programme. 

You can hear me talk about the importance of Welsh business archives. One of our employability students also shares her experience working with the records of Old Castle Tinplate Company.

The programme is available here for the next few days (from 19 minutes in). 

Cure Industry Tactics: Have They Changed?

I have been cleaning out my office for weeks. I have sold many books and discarded 30 years worth of academic journals in order to free up shelf space. This has led me to find all sorts of things tucked into books. Below is one image I came across

Before I deconstruct this image let me state in no uncertain terms a cure for spinal cord injury is a laudable goal. Given the choice between life with or without paralysis I would choose not to be paralyzed. I suspect every person with a spinal cord injury would say the same thing. The point I want to make very clear is I am not opposed to a cure for spinal cord injury. However, I am opposed to the fund raising tactics used by foundations dedicated to a cure. I worry about how such tactics impact the lives of people with a disability. This is especially true since the vast majority of fund raising methods continue to rely on a dated charity model of disability.

The image above is 12 years old. So yes it is dated. But keep in mind this was published well after the ADA was passed. A time when I was supposedly awarded equal rights. I have no doubt the ad was effective because it relied on preconceived ideas about disability and wheelchair use. What this ad effectively does is laud walking as the one and only means of locomotion. Walking is good wheelchair use is bad. Thus all people that use a wheelchair dream of walking running and making love. The blunt message is pity people with a spinal cord injury. They cannot do what we take for granted--walk, run and make love. I assure you some 34 years after I took my last step walking and running never crosses my mind. As for the making love, well I am a red blooded American male and enjoy sex. And yes paralyzed men and women have sex and enjoy it. Why we can even reproduce! My son is evidence of that fact.

I hate to burst the bubble of the bipedal masses but I do not dream about walking some day. Walking is simply not relevant. Indeed, as I have stated many times walking is highly over rated. No, what I think about is the injustice ads such as the one above foster. The toughest part of wheelchair use is not the fact I cannot walk. It is the social and architectural barriers I encounter every time leave my home. It is the social and the needless architectural barriers I rail against. This is in my estimation a realistic goal worth fighting for--equality. Equality is what we people with a disability want--not some platitudes about a cure for paralysis. We people with a disability want to go to work, own a home, have a job, kids, education and all the other mundane things that make up life in American society. We want to go out the door of our home and not be subject to baseless prejudice and stigma. We want to travel and not be forced to make a dozen phone calls to determine if a building or bus service is accessible. We do not want to think about access all the time. We want to go grocery shopping and not have mothers yank their kids hand and say "watch out for the wheelchair". We want to be ordinary, equal to others. But ordinary we are not. So if there is something I dream about it is the day when I can relax and go anywhere and not worry about negative social interactions. I do want to be told I am an amazing person because I can get my wheelchair in and out of my car. This is utterly dehumanizing. Simply put I am a sentient human being. I would like to be treated as such. This is not too much to ask. It is in fact what I dream about.