Image Problems Abound

One of my favorite magazines to like and dislike at the same time is New Mobility. A speciality publication, New Mobility is about people with disabilities and how they lead their lives. It is filled with terrible ads designed to separate people with disabilities from their money. Yes, you can learn about the latest about car adaptations, wheelchairs for sale, catheters, and so called restorative therapies. Despite my cranky views of the ads sometime the content is of interest. I regularly read the "Bully Pulpit", written by Tim Gilmer, the editor, and columnist Mike Ervin. Ervin often gives me a chuckle and this month he made me laugh and think with his column "ADA Fantasy". Ervin wrote:

"As I sat on the South Lawn of the White House 20 years ago and watched President George H. W. Bush sign the Americans with Disabilities Act, I was bursting with idealistic optimism. I dreamed the ADA would soon revolutionize the employment situation for people like me, radically transform our relationship with nondisabled Americans and create previously unimaginable disability utopia. But sweet Jesus was I wrong. The ADA hasn't brought about anything remotely resembling what I dared envision"

Ervin is deadly correct: the ADA has not in any way created or fostered the social revolution desperately needed for real social equality. The ADA was the culmination of 40 years of legislative initiative that has placed the law firmly on the side of people with disabilities. Those laws are widely ignored and have no social support. Sadly, the ADA is grossly misunderstood and poorly enforced. I have spent years wondering why the social revolution envisioned by Ervin, myself, and countless other advocates and lawmakers has not taken place. Over the last few weeks given my inability to get out of my own living room my schedule has changed. Part of that change is that I watch more television than usual. A theme of diverse shows I have been exposed to reveals a basic truth: we people with a disability have a giant problem with our image. Seemingly every show and news program portrays disability in a negative light. Any newly paralyzed person makes for great drama and tragedy. Hushed tones and sad faces are aplenty when such an accident occurs. Special educators are lauded for their super human efforts on behalf of their crippled students. I do not mean to belittle the efforts of such teachers but rather point out the students they teach have as much value as a student without a disability. Worse yet are charity stories--how a community comes together to raise money for a person with a disability so they can buy a wheelchair or access basic health care. Again, this is fine but lost in the tear jerking emotion is the question why: why does the community need raise money for a new wheelchair or why does the person in question not earn enough to afford health insurance. Another theme with regard to disability I have observed regards assisted suicide. When the issue comes up invariably a person with a disability is used to either promote or highlight why suicide should be legal. The not so subtle message is disability is a fate worse than death.

What is the point of the above observations? Until these images and ultimately demeaning stories are vanquished no social progress can be made. We need to see stories about the ADA being enforced with vigorous community and business support. We need to see universal social outrage when a building is not accessible, an elevator broken, or an insurance company deny needed adaptive equipment. We need to see people get pissed of when access is the first item cut out of budgets. We need to see a nationwide effort to employ people with a disability--afterall 70% of us are unemployed, a statistic that has not changed in 20 years. We need mass transportation systems that are accessible and not accessible in name only. We need to teach children separate in terms of disability is inherently unequal--a foundation of secondary school education when it comes to racial equality. None of this will happen regardless of what the law states without social support. And by social support I mean the social revolution that the ADA failed to create. Social outrage, revolution--that utopia that Ervin, myself and others have been dreaming of for over 20 years.

Party Time

I was at wound care today. Wow, I got a rave review. Yes, me for being the "poster boy of patient compliance". More importantly my skin got a rave review. The wound on my left has filled in. I no longer need the wound vacuum on my left. the only thing left to heal is the skin itself and that will fill in over time. The right too is better. The wound is almost filled in and the surrounding skin that was not looking great is much better. Being free of the wound vacuum on the left side is huge--a sure sign of significant progress and at a practical level I am no longer considered a "complex case". But the best news of all is the most mundane. I get to sit for 30 minutes a day. Yes, 30 glorious minutes will be spent in my wheelchair. I am beside myself with joy. Yet even this joy is tempered by reality. Today before went to wound care I looked at my house. All my furniture has been moved and I obviously knew that. But I went into my kitchen and was astounded. Nothing is where it once was. While I am not anal about organization I do like to know where stuff is. I now have no clue as to where a pot, pan, towel, sheet, or any other household item is located. In short pretend you went on vacation, a long one, and when you got back your entire house was rearranged--poorly. You may wonder what will I do when I get sit up? Clean and organize. Less cleaning but a massive restructuring of what once was. This is not sour grapes but rather an inevitable result of being dependent upon other people. Even seeing my messy house cannot spoil my wonderful mood. I am back baby--or well on my way! Time to celebrate with an extra beer tonight and the NY Ranger game. Gosh, life is pretty simple sometimes.