Equality is Illusive

This is not a photo shopped picture. I saw this image on Facebook and thought someone was having fun making a horribly wrong photo. Surely more than 20 years after the ADA was passed into law such a gross violation could never occur. This is wishful thinking at best and at worst pure fantasy. Segregation of people with a disability is not only still present but rampant. The only substantive change I have observed in the last twenty years is the type of prejudice encountered is no longer the same. The violation of disability rights is now couched in ever so polite and legal terms. Institutions know the ADA must be adhered to. Institutions know IDEA meetings must take place. This does not mean institutions want to follow the law or be inclusive. In my opinion, lip service is paid to the law. ADA violations are common place and twenty years post ADA stock replies, excuses, abound. Of course we are committed to being inclusive. Oh how many times I have heard that line used as I was excluded from participating in multiple activities at my son's public school when he was a boy. For instance, one year in elementary school the teacher sent home a note stating she was desperate for parents to go on a filed trip as chaperones. I filled out the form and wrote I would be happy to help. The next day I got a note "You cannot be included but thanks any way". Deeply annoyed, I asked exactly why I was excluded. Another note came home: "Chaperones must be healthy and there is no accessible bus". So much for the ADA. This pattern of exclusion never wavered in my son's public school. Public school administrators hated me and I will confess the sentiment was shared on my part. Inclusion from their point of view was costly and not necessary. I was not advocating for people with a disability but for myself alone. I was perceived to be singularly unusual and selfish in the extreme, a drain on limited resources better spent on students--average students, meaning students without a disability. There was a fundamental miscommunication that was never resolved. The school was, and to the best of my knowledge, remains hostile to the inclusion of parents with a disability.

Given the above, why was I shocked by the image? The exclusion is so stark and so obviously wrong no excuse is possible. This sort of segregation is over the top. It is blatant and makes me shudder. I shudder because it was public. We anthropologists would consider this a humiliation ritual. The group, meaning the audience and participants, do not value the person sitting in the wheelchair. Every man woman and child in attendance learned one thing at this event. Segregation of all people that use a wheelchair is socially acceptable. It is the norm. Inclusion is an ideal we can choose to talk about but it is not really something that is valued or readily achieved. Inclusion is something we get to pick and choose out of the goodness of our heart. Surely I am being too harsh, too demanding, too uppity. All words I have heard levied at me again and again. No, words cannot express my outrage. And like my son's public school, the school this child attends does not get it. Once the above image went viral the school released an apology of sorts. The school in question press release stated:

"It was a regrettable oversight that the student with special needs was not positioned with the rest of his schoolmates during the choral performance. The student has been a member of the chorus for the entire school year and there have been no prior issues. The choral director has cited several reasons why this occurred but accepts responsibility. The matter will be investigated and, if necessary, appropriate personnel action will be taken. That action could include a letter of reprimand and/or sensitivity training."

A regrettable oversight? Reprimand and/or sensitivity training? No excuse can explain away the the public humiliation this child endured. A humiliation sanctioned by the teacher, audience, and participants. No amount of sensitivity training is sufficient. No reprimand too lenient. Blatant bigotry reared its ugly head and the school did not even recognize it. This is as bad as the event itself. Worse yet, I suspect this is the tip of the veritable iceberg. I attended many public school events when my son was little. Children are repeatedly told to be on their best behavior. Notes are sent home about dress codes that cannot be violated. The reality is the teachers and school are putting on a show, a public demonstration celebrating how good the school is. Look at us, we are great. What I want to know is what happens to this student daily. Is he segregated during recess, gym, art class, on the school bus? Most likely. How many regrettable incidents take place when there are no cameras around? How often is he shunted aside during choir practice? Is what he experienced the norm?

The boy's mother said her son was inspired to sing in the choir because of the TV show Glee. I lowered my head in disbelief, deeply saddened. This boy's role model is a fictional television character played by a man without a disability. I again thought of my son's experience as a secondary school student.One day he brought home an assignment about civil rights. Great I thought. I told him to go to my office or the library and pick out a book that was of interest. Did he follow my suggestion? Of course not. He went on line instead and somehow stumbled upon the name Ed Roberts. I was thrilled. He filled out the terrible rubric secondary schools rely upon with a short paragraph about Ed Roberts life and fight for disability rights. The next day the rubric was returned with a short note "The assignment is supposed to be about civil rights. Disability is not an appropriate topic, it is different than real civil rights". And here lies the heart of the problem. There is no social mandate for disability rights. Sure a multitude of laws exist. Laws that are violated daily. Laws that are not valued. Laws that are mocked. Laws that are not even perceived as civil rights legislation. This makes my blood boil. What gets me the most angry are secondary schools that explicitly teach students and adults the segregation of people with a disability is not only acceptable but the norm, mere oversights easily negated by sensitivity training. At no point do students learn about disability rights as civil rights. Until this becomes part of the core curriculum in secondary schools and on college campuses I do not envision change taking place any time soon.

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!