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Wednesday, February 23, 2011

AAPD Oblivious to Disability?

I just got an email that truly pissed me off. The American Association of People with Disabilities (AAPD) invited me to the 2011 Gala in Washington DC. Last year I thought about going. This year no such thoughts entered my mind. In fact the mere email notice made me mad. Why am I mad? How about this--the AAPD Image Award goes to to the cast and creative team behind the television show Glee. Glee? Glee? No it cannot be Glee--you know the show where Arnie dreams of walking and portrays an image of disability that is one gross stereotype after another. And yes the same Arnie portrayed by an actor without a disability. A modern day equivalent of white people putting on black face circa 1930. Were the people at the AAPD smoking dope when they made this decision? Maybe they dropped some acid. How can the AAPD be oblivious to the fact Glee has enraged people with disabilities. Has the AAPD read anything about the outrage directed toward the show Glee? I am far from alone in expressing my outrage at the way people with disabilities are portrayed on Glee.

If the Glee reference were not enough I was more outraged by the list of speakers. A few token crips are on the agenda--no surprise there. The AAPD tagged Stevie Wonder and Bob Dole among others. But also speaking is Gerald Arpey, the President and CEO of American Airlines. Yes , the CEO of a major American airliner is asked to speak. This person works in an industry that has a long history of discrimination against people with disabilities. Why just last year the DOJ reported complaints against the big American carriers, airlines like American, rose sharply. Come on, how oblivious can the AAPD be? I do not expect much from such galas. They are all about show not substance But the AAPD must make some effort to ground such a gala in reality. Of course prominently displayed in the email was the offer of sponsorships. Opportunities are available from $1,000 to $250,000. Yikes that is a lot of money. Instead of patting themselves on the back fro a job well done perhaps the AAPD could look into the following states:

California: Budget cuts threaten developmentally disabled children. See also ADAPT protests at what they dubbed Arnieville.

South Carolina: An all out effort is being made to reduce disability services.

Illinois: Budget cuts across the board that affect elderly and disabled people. Some worry entire programs will be eliminated.

I could go on state by state. Who gets hurt? People with no voice, no connected lobbyists, those that can least afford to suffer, those most in need. I have yet to read one thing the AAPD has done to stop the budget cuts that hurt people with disabilities. What I wonder were organizers thinking? It is obvious the AAPD is divorced from the reality most people with disabilities experience. Anyone with an ounce of common sense would not invite the cast of Glee or CEO of any American airline. But hey what do I know. I have only been thinking and writing about disability rights since Bob Murphy put the idea in my brain shortly after I was paralyzed. His book, The Body Silent, changed my life. To me, this is only another example that those in Washington DC politics are a class apart from the average citizen. But for now I am just mad. Furious in fact. The AAPD can go kiss my skinny Irish ass.

Nearing the End

I was at wound care yesterday. The wound continues to make progress. I have great granulation and the wound is fully filled in. After much discussion the wound vacuum is off or as they dryly put we discontinued therapy. A happy day indeed! I referred to the wound vacuum as my ball and chain. It was necessary and speeded healing but the company that has a monopoly on the wound vacuum market, KCI, was a nightmare to deal with. KCI is the perfect representation of evil, the perfect example of all that is wrong with corporate America. Regardless I am wound vacuum free. This does not mean the wound is healed. The skin needs to grow back and close the last part of the wound, around the size of a fifty cent piece. I hope to be free of wound care in a month. For now I am changing the dressing daily and will have wound care come once week to measure the wound and confirm it is getting smaller. As my brother told me on the way home from seeing the doctor, "don't fuck it up now". Words of wisdom and colorful too! I was warned by him and the surgeon--do not sit up too much. There is more healing to be done. To insure I am careful I remind myself that if I wound that wound today I would be very upset. I want to be healed and never ever worry about such problems again.

I have learned a hard lesson--the hardest. Skin care prevention is of paramount importance. Never in my wildest dreams did I ever think it would take six months to heal a wound. Never did I envision myself stuck in bed and isolated. Never did I dream I would miss the ski season. Denial is a powerful emotion. In fact in part it got me through this extended nightmare. One thing has dominated my thoughts as I near the end of my long journey in wound care. Helping others avoid this problem or helping those cope with an existing skin problem. I will give the surgeon a copy of my posts and hope there is something I can do. No one should be forced to endure what I have. It is a form of cruel and unusual punishment to be stuck in one's home for months on end. Worse yet some, many actually, are forced into nursing homes for the exact same problem--a far worse fate than I experienced. Something needs to be done to help those in similar circumstances. Also education in the form of prevention must be given higher priority. High end cushions need to be given to all paralyzed people and those at risk. This would not only be good for people but save valuable health care dollars. We just need the vision to make this happen.

Sunday, February 20, 2011

A Fate I Escaped

These last six months have been very hard. First, I was in the hospital and endured two bloody debridements. Second, I was on enforced bed rest and dependent upon my family to care for me for months. These two major events say nothing of the tremendous expense wound care has involved. The biggest expense was the purchase of a clinitron bed and the extended rental of a KCI wound vacuum. Even with all this I consider myself very lucky. I had a family that sacrificed and cared for me in my own home. For this, I am eternally grateful. But what I am most relieved about is that I am home and have been since I was released from the hospital. Accordingly, I am lucky times two because I escaped a nursing home. Most paralyzed people are not so lucky. Nursing homes are a necessary evil. Most such institutions are a place people go to die. Death in my estimation takes place long before the heart stops beating. Death in institutions is caused by inertia or lackthereof. The routine, the needs of the institution are paramount. No action takes place, indeed inaction is desired. Routine is serene and secure. People that rock the boat, ignore the routine are trouble. The routine is mind numbing if not deadly. What is worse, far more troubling, is that the age of people entering nursing homes is dropping. Paralyzed people often end up in nursing homes. Look at the history of the disability rights movement--some of the biggest advances originated in the halls of nursing home pushed by young people. Young people locked away and unable to have a social life. This is how the battle for mass transportation, specifically buses in Denver, started and spread across the country int he late 1970s.

The above thoughts came to mind when I read an article in the Houston Chronicle about the number of people with disabilities now living in nursing homes. According to the article, people age 31-64 have entered nursing homes at a higher rate than those 65 or older. People under 65 now constitute 14% of the nursing home population. I find this figure stunning, shocking in fact. Why do people under 65 end up in a nursing home? Simple: money. Most people cannot afford home care services. Young people end up in nursing homes because of traumatic injuries while others are institutionalized because they have chronic conditions. Enduring life in a nursing home at a young age is for me unimaginable. I have surely struggled since I have been stuck in bed and isolated. However my struggles pale in comparison to a person my age that finds himself or herself in a nursing home. I find it hard to fathom why we do not rely more on home based care. It is a far more humane way to live. One can maintain a level of dignity the best institution in the world cannot provide. I think it is not in dispute that community based long term care is the ideal. However this ideal is not well funded, long waiting lists are common in most states and the nursing home industry yields great clout within political circles. We as a people should be outraged. We should demand appropriate home based care that is not only available but affordable. No such demand exists. Sure groups like ADAPT forcefully push for community based care but how many Americans even know ADAPT exists. Sadly, not many. Part of the problem is that people do not want to consider much less seriously think of life with a disability. Like it not though most of us who live long enough will have to cope with some sort of disabling condition. What is also not considered is the social isolation that is often associated with disability. Why are people with a disability isolated? American society both socially and practically is not designed to be inclusive. Stigma is still attached to disability in spite pf the fact the ADA was passed 20 years ago.

I will be the first person to admit the social plight of people with a disability is markedly better than it was 30 years ago when I was paralyzed. This is a far cry from saying I am considered equal to my fellow Americans that wake up in the morning and stand up. Wheelchair use and disability in general remains a quasi tragedy in the estimation of most people. See my last post about Mr. Lakeman int he NY Daily News to see how this message is delivered in a routine everyday fashion. It is not hard for me to conclude we can reduce the number of people, young and old alike, in nursing homes if we valued the elderly and people with disabilities. The fact is we do not value disabled lives or the lives of the elderly. If we did, adequate social supports would exist. Supports that would have made my fear of a nursing home a thing of the past.