2005-11-24 - 10:05 a.m.
I am thankful, first and foremost, for Nya. I could not ask for a better partner. She is everything to me � my heart, my life. The other day she was worrying that she wasn�t practical and wasn�t good for me because I need a partner who can get things done. I said this was ridiculous, as she effects day-to-day practical things all the time. I couldn�t live my daily life without her. But she said she still felt that she couldn�t handle certain things like budgets. I said that handling money was a very small sub-skill of practicality (and one that is not somehow innate, but can be practiced and improved).
There was in fact undeniable proof that she was practical. She was once a junkie, with all the associated corruption (no, she was never a prostitute, but she was a thief, a liar, a stripper, a dealer to support her habit). Now she was not, didn�t even smoke, and didn�t live that precarious AA-type existence where there is always the danger of slipping back (one day at a time, indeed � I confess that I�ve never understood how that was sustainable, although obviously it works for a lot of people). Getting up off the bottom and successfully cleaning yourself up is the ultimate in effectiveness. It is a skill I admire probably more than anything.
Nya protested that changing her life wasn�t an example of practicality, it was survival. But survival is practicality. I realize this on a day-to-day, moment-to-moment basis. When I walk across a room, I am not checking ahead to see what corner or piece of furniture I can hold onto for my next step out of some abstract, academic interest in being efficient. I�m doing it to avoid falling down splat and breaking my head. Survival, whether getting past the obstacles of disability or getting over the challenge of heroin-addiction, may provide an expedient incentive for solving practical problems. But successfully figuring out what to do next takes your own ability and strength.
Not everyone has this capacity. It may in fact be frighteningly rare. How many junkies never pull themselves out of that way of life and end up overdosed and forgotten in some corner? And I fear the number of people with a disability who are never able to successfully negotiate around the issues they face or who let themselves buy into a social view of the disabled as totally helpless invalids and end up letting themselves become that way. Sometimes I think the odds are very much against me and my living a full life. But Nya is a constant reminder that odds can be overcome and that what you want can be effected. So, in addition to so many other things, I am thankful for her giving me the courage to live.
I am thankful that I am sick now, as opposed to ten or twenty years ago (I�d be even more thankful if it were twenty years from now). Firstly, just the modern world we live in. I know I�ve marveled at this before, but I really can�t imagine doing this before the communication allowed by cell phones. Or the world of information offered by the Internet. Or the comfort given by climate control. Or the added ease of doing things given by the building mandates of the Americans with Disabilities Act (much props to the Reagan-era advocates who drafted it).
Never mind just the massive shift in societal perception that over the last few centuries has moved crips like me from being seen as highly suspect (possibly agents of Satan) to objects of confusion (why is that guy even trying to do something?) to individuals considered in their own right, albeit sometimes more with pity than empathy (poor guy; well, I�m glad that�s not me). Eventually, I firmly believe that others will come to see people with disabilities as simply Fred or Sally who writes well and plays the clarinet and has a hard time getting around. (Maybe no one will even speak of �the disabled� as a group.)
Furthermore, while it is never a good time to have any autoimmune disease, far better today than in the past. A tremendous amount of progress is being made into understanding and treating my condition. Ten or twelve years ago there were no effective drugs to treat MS effectively; today there are many. Clinical trials testing some medicine or other are happening almost all the time now. I do think it�s important not to get too wrapped up and enamored with any individual therapy candidate. Maintain a healthy skepticism; better to be pleasantly surprised than bitterly disappointed.
And more radical therapies are also being tried out. Just recently, I applied for a very extreme trial of autologous blood stem cell transplantation. Basically, they take out some of your own adult stem cells from your blood, kill off your immune system, then reinject your stem cells with the thought that they�ll set up a new immune system that doesn�t attack your own myelin. You�re in a bubble for several weeks of course, where you could die from an opportunistic infection, but it might help a lot. Then again, it might not. All sort of academic unless I get approved for this study. I�ll let you know.
I�m thankful that I�ve discovered a life pursuit about which I�m passionate. I realize I don�t talk much about my start-up business here (I did mention my early notion of starting it in my Brown Daily Herald profile). It�s called No Pity Mobility Corp. The idea is to market and sell products for mobility needs that are, well, cool. That don�t look like they�re borrowed from a nursing home. My initial product offerings will be decorative accessories for wheelchairs (low-cost, but with essentially no medical value reimbursable by insurance � although their psychological value may be immeasurable).
One item I�m developing is wheel covers for wheelchair wheels. Rather than just a bare wheel, you could tool around with a printed design of artwork or (when I work out the licensing) a sports team or movie symbol. I will not rest until some paraplegic has a Yankees logo on each wheel of his chair. And you know �spinner� wheels? Hip-hop-type wheels where the inner spokes continue to turn after the rim has stopped? Why should ghetto-fabulous be reserved only for the able bodied? No one makes these now for wheelchairs. In fact, few companies make any kind of spiffy wheels for wheelchairs (and only one does exclusively this). A chair with these should be in 50 Cent�s next video.
There is a whole host of further products that await. Almost any disability device on the market can be made to look slicker without sacrificing any functionality. Now, a current sticking point is: what the hell do I really know about design? But there are many people who do. Industrial and product designers can be commissioned and their better-looking results tested to ensure no strength has been lost in the device. Frasier�s dad should have been able to have a four-post cane that said: �I was a cop once. Even if my sons are fruitcakes, I was a tough guy!� instead of the atrocity he went around with that resembled an umbrella stand.
Right now, I don�t really have any legal protection shielding these ideas and I�m not sure how any can be developed. Oh sure, patents could be gotten for the specific method of attaching the wheel covers to the wheels or for the exact design of the spinners. But I don�t think there�s a way of making the overall concept proprietary. You can�t put a patent on the idea of putting Tyvek� discs on a chair. Nothing will stop an industry leader from seeing there�s a demand for such things and following with similar products. But my bet is that they just won�t. Corporate inertia is not a factor that can be discounted.
Invacare or whoever will not make cool-looking mobility products because they just don�t. Buick does not make spiffy sports cars for the same reason. It�s just not what they do, it�s not their core competency. They�re not known for it. No one ever says: �Yeah, I�m gonna get me a hot new low-slung roadster at Buick!� And if the business world and consumer mindsets ever come to change so much that a disability product catalog looks as slick and gets you as jazzed up to spend money as a Sharper Image catalog, well. It�ll be a world I�ll like a lot better, even though I might not have made a billion or a million or a thousand.
� 2005 Geoff Gladstone
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