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Thursday, August 4, 2011

Jerry Fucking Lewis!

Last night before I went to bed I was browsing the news online when I came across the headline "Jerry Lewis No Longer MDA National Chairman". This news delighted me. I do not mention Lewis much on this blog. Suffice it to say in spite of all the money he raised on behalf of the MDA, I consider him one of the foremost destructive forces in terms of disability rights. Even as child I found the MDA telethon, all telethons, tawdry. The MDA telethon was just the worst of the worst. The cloying use of pity, the pathetic tear jerking song Lewis sang at the end of the telethon always seemed antiquated and wrong. I suspect what bothered me was I knew he was using children with disabilities. The message was clear: life with a disability is a fate worse than death. You people, Lewis implored, meaning those fortunate enough to live life without a disability, should give money to the pathetic creatures on stage. This worked for decades. Pity as a fundraising technique simply works. It still does even though telethons are now largely a thing of the past.

Thanks to people like Mike Ervin and Cris Mathews in Chicago, Laura Hershey in Denver and Harriet McBryde Johnson in Charleston protests against the MDA telethon and Lewis in particular spread. People with disabilities had enough. Offensive comments made by Lewis over the years began to be seen for what they were--deeply hurtful and bigoted. Still, the MDA resisted and now 21 years after the ADA was passed has ever so slowly begun to separate themselves from Lewis. Hopefully 2011 will be the last year of the abridged version of the MDA telethon. Lewis' resignation from the MDA can only be perceived as a good thing. I suspect his departure from the MDA was unpleasant, perhaps forced. I have no inside information in this regard but the carefully worded and terse announcement by the MDA provided no explanation for why Lewis will not appear on the upcoming telethon. According to MDA Chairman of the Board R. Rodney Howell Lewis "will not be appearing on the telethon" and "we will not be replacing him as MDA national chairman".

I am sure I will get more than a few nasty emails in response to the title of this post and critical words about Lewis. For those unhappy with me I suggest reading Harriet McBryde John's wonderfully witty chapter in her book Too Late To Die Young about her protest of the MDA telethon (Honk if You Hate Telethons). I will end with a quote from McBryde Johnson that highlights exactly why the telethon was so destructive:

"My mother thought telethons were tacky. She said no when we were asked to appear. She tried to distance me from them, but my own eyes told me the MDA thon was about people like me... The poster children looked just like us: we were all literally the same flesh... Together in the crip ghetto, my friends and I watched the annual parade of our little dopplegangers being publicly sentenced to death and saw one another through with gallows humor. Later, having moved on to the mainstream world, I wanted to go to law school, qualify for scholarships, get a job and car loan, start a business. But dying children aren't allowed to do such things; they can't be trusted to fulfill their obligations." Yes, the ordinary is beyond the crippled. And this my friends is why the fact Jerry Lewis is no longer associated with the MDA is a positive development.

Tuesday, August 2, 2011

Houston We have a Problem: Our Social Failure

Sorry for the lack of posts in July. I am afraid August may be just as slow. As already mentioned, I am loving my return to a routine life. Last month I made two trips. First to Vermont where I volunteered at the Vermont 100 (a fund raiser for Vermont Adaptive Ski and Sports). My big trip was out west to Seattle for the Seattle Children's 7th Annual Pediatric Bioethics Conference. I came away from the Seattle conference energized and depressed. Our health care system is hopelessly screwed up--not exactly front page news I know. At the conference there seemed to be united agreement on this as well as an utter lack of agreement on how to fix the health system. But it is heartening to know there are many MDs and PhDs out there that are just as disturbed as I am. Unfortunately, nothing is being done in the here and now to fix the myriad of problems doctors and people with disabilities encounter. United we could spearhead change. On the flight home I dreamed of working with caring compassionate doctors who want to empower and embrace the goals of all people, those with and without disabilities--social equality and equal access to health care. We people with disabilities, I thought, have much experience with the health care system and routinely get inferior care. Surely, working from the inside and outside of the medical community we could foster real change.

The above I have concluded is nothing but a pipe dream. Despite the obvious care and concern exhibited by the many fine physicians I met, they are an economic world apart from many of the people with disabilities they treat. As a group, MDs are well compensated and wealthy. As a group, people with a disability are unemployed in staggering numbers and often have poor health insurance--if any at all. The disparities are startling. This reminded yet again of the true social problems people with a disability have yet to overcome due to decades of socially accepted exclusion. In a mere forty years since our attitudes toward disability began to change and yet the only thing we have accomplished is a series of laws such as the ADA that are routinely ignored. This thought too came to mind as I flew on a commercial jet and was treated as poorly as expected in spite of many laws that supposedly make me equal. And yes airlines treat everyone poorly however I doubt anyone walking is ever forced to wait an hour to get off the plane after the last passenger has left. The point I am trying to stress here is that when it comes to disability we seem to always be the first to suffer. Suffer. An apt word given what is going on with the economy. We appear to have dodged what the media has hysterically called "Financial Armageddon". The scary part to me is that among people with a disability I am well off. That is I have insurance, bad insurance but insurance nonetheless, a supportive family, my own home and work. The people I worry about are those that have no voice such as those in a group home or those dependent upon social security and state support. Simply put, state and federal agencies cannot serve the population they were created to support--the elderly, disabled and poor. This troika is suffering in the truest sense of the word. The budget cuts hurt this population more than any other. Worse yet, no one cares. These people, my people, have no lobbyists. That have no power.

Let's take New York and California as examples. Since 2008 billions of dollars have been slashed from budgets that are set up to assist people with disabilities, elderly and the poor in California. $3 billion has been cut from Medi-Cal that insured about 7.5 million Californians. $4.6 billion was cut from Supplemental Security Income Program that supports 13 million people with little or no income. For people with a disability such as a spinal cord injury, a quadriplegic for instance, these cuts mean the difference between living at home and being in a nursing home. Those that end up in a nursing home rarely escape such institutions. To me, this is suffering--being forced from your home and family to a nursing home. To me, this is the sort of cut that is socially and morally unacceptable.

In New York, the NY Times is continuing its wonderful examination of group homes in the state of New York. In "Reaping Millions in Nonprofit Care for Disabled" the NY Times details how two men have become wealthy running a Medicaid financed non profit organization serving people with developmental disabilities. In addition to salaries that neared one million dollars each man had luxury cars paid for with public money. When their children went to college they passed on the tuition bill to their non profit group. While this was taking place the waiting list for group homes in the state remained long--hopelessly long in some cases. Families as a result suffered. There it is again, that pesky word suffer.

What I want to know is when will it end? How much can we take away from those in the most need? When will those being hurt, the suffering masses, rise up? I wish I had answers to these questions but I do not. I do know the situation is grim. I know it is unacceptable. So the issue is when and where will someone or some group in this country say no. No you cannot cut the budget. Lives are at stake. I am sure it will happen--it is not an if but a when. This is the day I look forward to.