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Thursday, June 17, 2010

Disasters: Sorry But You Are Not Important

In the event of a a disaster people with a disability are screwed. This is a harsh fact of life. I think about this every time I fly on a plane. I know the odds of surviving a plane crash are remote at best. I know my odds are far longer than most people I fly with. I would need help getting off any plane that crashed and I have no doubt when faced with a life and death situation precious few people will stick around to help me. This includes the flight attendants whose job description theoretically includes helping me. I live with the knowledge that in event of a disaster no help with be forthcoming. I do not let this knowledge prevent me from getting on a plane or other means of mass transportation. What does bother me is that our government makes no pretense that is will help people with a disability in the event of a disaster. Disaster studies make for scary reading--truly troubling if you have a disability. We people with a disability are the very bottom of the priority list. We will be the last, and I mean the very last, people saved. Shoot, pets have a better chance at survival and rescue.

This week the Federal Emergency Management Agency (FEMA) acknowledged what I already know--it cannot be expected to save people with a disability in the event of a natural disaster. Why is this the case? Marcie Roth, FEMA's senior advisor on disability issues says there is a lack of funds to do so. FEMA does have a plan in place though to evacuate, shelter, and supply people with a disability in case of a natural disaster. And who is in charge of this plan and what is the budget? One person is in charge and the budget is $150,00. So FEMA has a plan in theory and no ability to implement it. I feel so much safer! Of course, FEMA is also the government organization that in 2005 during Hurricane Katrina took three days to get water to the Superdome. Hence, my expectations, low to begin with, are really non existent now. The House Committee on Home Land security suggested FEMA create a registry--FEMA rejected this idea because it would give people with a disability a false sense of security. I translate this to mean no help with ever be forthcoming. No wonder I think my life has less value than others that can walk. FEMA has acknowledged this as have most disaster planners. My point is the next time people cluck about how we Americans are equal I suggest readers with a disability bring up disasters plan. They are proof positive our own government does not value our existence and lives. This is a fact of life I live with and don't like. It is not that I worry about disasters but rather the larger meaning of such plans and how they filter down into every day life.

Wednesday, June 16, 2010

Home Depot: A Missed Opportunity

I hate super stores. They are truly miserable places to shop. Customer service is non existent despite what the ads on television portray. When I go to stores such as Staples, Home Depot, Target etc. I have no expectations except cheap prices. However, I pay dearly for those lower prices. For me, I pay via ignorance, stunning stupidity, and often shockingly rude comments and questions. It is not just the customers that are the problem--employees are equally unaware. Yesterday, I was in the Home Depot and had a typically negative encounter. When I shop at the Home Depot I go during the week at an odd time. More often than not the store is devoid of customers and employees. Yesterday was typical. Aisle after aisle was empty and the store looked like a ghost town. All was well with the world until I encountered an employee I could not void. As I was passing her in a loud voice she stated "Hey, no speeding in the store. The speed limit is enforced". I stared at the woman with a face of stone. No comment was necessary. Oblivious, she cackled at her own joke clearly amused at my expense. What I did next bothers me--I did nothing. I kept on going and simply let my anger stew. In retrospect I should have stopped this employee and told her exactly how rude she was. I should have gone to customer service and complained. Her "joke" was not funny or remotely appropriate. I permitted myself to be the butt of this employee's joke. I felt less than human, reduced to an inanimate object told not to speed. I was not amused and have heard this so called joke about speeding more times than I care to remember. The joke tellers think they are hysterical. They are not funny at all. They are rude and thoughtless. This is a problem. How do I explain this so called joke is not funny? How do I tell them that I am deeply insulted and angry? How do I get them to acknowledge that I a human being?

I do not have any ready answers to the questions above. I wish I did. When I let such social violations pass without comment I feel like I missed an opportunity to educate and correct. Ignorance afterall can be cured by a little education. But why I wonder is such an educational effort left to me and other people with a disability. It is not our job to educate the masses about disability. Surely disability awareness is part of the secondary school curriculum or employee training. If this true, why does ignorance abound? Frankly, I am getting too old and way too cranky to tolerate ignorant comments. I try not to be confrontational but there are times I cannot or should not let comments go. Yesterday's speeding "joke" was one of those times I needed to stop and be confrontational. Aside from the ignorance of the question, the laughter at my expense hurt. Sadly, such comments are far from unusual. I have been subjected to rude comments from strangers for the last thirty years. These comments have not abated--they are uttered with stunning regularity. I have adapted by creating some pretty sharp if not devastating replies that shut people up fast. This makes me feel better but I am not sure how helpful this is. I suspect my cutting replies are quickly dismissed; I am perceived to be the "angry" disabled person that hates his lot in life, an antiquated stereotype. My other means of adapting is less than helpful--I have learned to avoid certain social situations. I never ever go to health food stores--an offer for a cure to paralysis via herbal remedy is common. I never go to church--someone will tell me if I pray hard enough I will be able to walk again. In the end, what I resent the most is being public property, having my humanity violated on a regular basis. I just do not understand why others, all other humans, don't get this.

Tuesday, June 15, 2010

Adaptation and Enhancement

FIXED (Trailer) from Regan Brashear on Vimeo.

The trailer for Fixed has put my brain in over drive the last few days. I am torn about the very idea of being fixed and title of the film. I do not think my body needs to be fixed. Let me be emphatic: I am quite happy with my body the way it is. I have no interest in stem cell research or a cure for paralysis. This does not mean I like being paralyzed. But paralysis is a fact of life for me and will not change. However, I can change society and the cultural response to paralysis and disability in general--this is why I write about and study disability. I want to make a concrete contribution to the lives of those with a disability. This effort is an uphill and often thankless battle. Disability is perceived to be a problem by many people and institutions. The medical establishment in particular views disability as the ultimate symbolic failure and seeks out cures no matter how impractical. I am not opposed to pure research but rather deal with the here and now. And right now I am wondering why disability in the broadest sense of the term yields so many stupid and needless inventions. I see silly and impractical inventions hailed all the time and can only shake my head in wonder. For example, a few months back I read about an exo-skeleton that enables a paraplegic to walk. This exo-skeleton may have a cool factor but is totally impractical. A wheelchair is a far superior technological device that is not only empowering but liberating. Yet no one thinks a wheelchair is cool. A wheelchair is bad, the ultimate symbol of disability and dependence. This is why the notion of being "fixed", the title of the trailer and film is so misleading. It ties directly into negative assumptions about disability. I deeply resent the popular cultural assumptions about disability because they are misguided and wrong. I do not see anything wrong with disability. Instead I see great beauty in disability--it brings out the best in the human spirit and our ability to adapt. And if we humans have proved anything we are very good at adapting--we have been doing it for millions of years. If you doubt me I suggest you read the work of Charles Darwin.

Why do I see beauty in disability? It has nothing, and I mean nil, about "overcoming" a disability or being "inspiring" to others. Such notions are demeaning and destructive. I find the way people adapt to their disabled bodies fascinating. One must discard all you have been taught and think in a radically different way. You must do this daily. This can entail something as mundane as how to navigate a street or get from the ground back into a wheelchair. The environment we people with a disability must navigate is hostile both practically and socially. Architectural barriers remain common place and discrimination is rampant. Thus we learn to adapt. This does not mean I am opposed to pure research for cures to a host of disabling conditions. I am also not opposed to human enhancement and technology. But my idea of enhancement does not often jive with people in the field. Enhancement in my estimation is too often rooted in a medical or profit model of disability. What people fail to realize is the beauty of disability and how it enhances our life. In the words of the artist Reva Lehrer: "In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions. There is a great deal of creativity in disability if you decide that "reality" is just a raw material for you to mould. So many times, these re-inventions have been the keys to open new doors for everyone."

The new doors Lehrer describes can take many different forms. These forms do not include sitting around hoping, praying or supporting a cure to paralysis. These doors do not include any technology that is an impractical attempt to mitigate disability, to make others feel more comfortable with the disabled body. Don't misunderstand the point I am trying to make. I support all efforts to enhance the quality of life of people with a disability. At issue is how is that life perceived. For instance, I keep up with the latest technological gadgets and advancements in the wheelchair, bike, and ski industry. I rapidly incorporate those advances into my life. None of this involves a desire to walk, to fit in and make my disability disappear. In my case, paralysis is part of who I am as a human being--it is an integral part of my identity. I see nothing wrong with my body. This viewpoint is radically different from what people in human enhancement think. They see the body as a platform to incorporate and improve the human body. Well, this works in some case but not all. For instance, I laud the advances in prosthetic technology. Such advances improve the quality of life for amputees. But I do question where and why such advances have been made. The fact amputation is one of the "signature" wounds of the Iraq war cannot be ignored. It is undoubtedly a factor in the evolution and advancement of such technology. At the other end of the spectrum we have the Ashley Treatment and growth attenuation. I consider this ethically unacceptable. It is a medical solution to a social problem, one that could be solved if we as a society provided the appropriate support services for those with cognitive and physical disabilities. Hence I find the words of people like George Devorsky who supported the Ashley Treatment disturbing at best.

As to the film Fixed that prompted me to write, I have great hopes it will be well done. The scene with John Hockenberry and his family is wonderful. I loved his book Moving Violations and have found his subsequent comments about disability thought provoking. I am usually in agreement with what Hockenberry has to say about disability. Interestingly, he has played with the idea of how to make disability cool. He has put lights on his wheelchair, painted it different colors and listened to some smart people--his children. I too listen to kids as they have no preconceived ideas about disability. This makes me wish we could put children in charger of the durable medical goods industry that has a penchant for treating its customers like dirt, making over priced and inferior products, and stifling innovation. Why is this this attitude common? It gets back to what I have been writing about since I began this blog--valuing the life of those that live with a disability. We are afterall creative people that exemplify human adaptability.