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Tuesday, August 22, 2017

Do Not Speak Ill of the Dead: Jerry Lewis

Jerry Lewis is dead.  Many are mourning his death. Every major newspaper in the nation published obituaries. As is the norm, praise is being heaped upon his life and career. Lewis, love him or hate him, was an important Hollywood figure. There is no question he was an influential comedian. In the Comedians Kliph Nesteroff wrote "The comic neuroses, the good and bad side, the funny, smiling side and brooding, angry, depressed side--Jerry Lewis had both of those. Whether he was aware of it or not, we frequently saw both sides of him on display". I never saw both sides of Jerry Lewis. I found his slap stick humor humorless. Even as a child his most famous film, The Nutty Professor, did not make me laugh. However, I will acknowledge humor is often hit or miss. At an intellectual level I understand why Lewis was famous and why he was fawned over much of his life. What I do not understand is why he struck me as such a miserable human being. He seemed mad at the world and I got the sense he enjoyed needlessly hurting others.

The reaction to Lewis death is twofold: the vast majority acknowledge his supposed brilliance, especially of the French, and his great influence in the comedy world. Another smaller group of people did not mourn his passing. For people with a disability, Lewis was openly despised. The reasons for this are not complex. Lewis hated people with a disability. That is he hated any person with a disability that had a sentient thought and questioned Lewis and his charitable work with the Muscular Dystrophy Association. Lewis raised hundreds of millions of dollars to "fight" MD. Despite this, he caused far more harm to the lives of people with a disability. None of this is news to anyone with a  passing interest in disability rights. Others far more articulate people have written about Lewis: Ben Mattlin, Mike Ervin and his sister Cris Matthews, Harriet Mcbride Johnson, Laura Hershey, and many others.

Lewis hatred of people with a disability was tied up in a mix of fear, pity, stigma, ignorance, and the belief he was doing good. The good he was doing was simple: he was going to raise money for the less fortunate. Who were the most unfortunate human being at the time Lewis was active? Children with disabilities who quickly became "Jerry's Kids". The MDA counted on Jerry Lewis to be a cash cow they happily embraced. Jerry Lewis used the MDA to demonstrate what a humanitarian he was. People that knew nothing about disability sucked up the saccharine sweet nectar via demeaning telethons while people with a disability simmered in silence. Jerry's Kids were made to look pathetic and pitiable--any easy thing to do prior to the idea people people with a disability had rights and were human beings. As Stephen Kuusisto wrote a days ago:

Lewis saw disability as most Americans of his time did—as an implacable thief, a menacing, unnameable dread. When Martin and Lewis began in showbiz the disabled were not generally out in public. Polio victims were kept out of sight. Any disabling condition was understood as a dreadful thing. Link:

Lewis association with the MDA came to an awkward and abrupt end in 2010. I don't know the inside story behind Lewis ouster but I sure would like to. What I do know is that people with a disability started striking back at Lewis in the late 1980s. The best description of an incipient disability based critique of Lewis can be found in Harriet Mcbride's Johnson's memoir Too Late to Die Young. Her chapter, "Honk if You Hate Telethons" is both funny and thought provoking.

In 1990 the flood gates of criticism flooded open after Lewis infamous article in Parade Magazine entitled "If I had Muscular Dystrophy". Link to reproduction of the article: Even today the article is shockingly mean--it was vicious for no reason. Two quotes should suffice to get a sense of the deep anger and bigotry Lewis felt:

I don't usually take the time to think about "what if." Oh yes, there's the expression: "There but for the grace of God go I" is used in a variety of contexts, but rarely do people take a solid look from the outside in and see themselves as other than they are.
So I decided, after 41 years of battling this curse that attacks children of all ages and does it with 40 different ways to make its point (there are 40 different neuromuscular diseases), I would put myself in that chair ... that steel imprisonment that long has been deemed the dystrophic child's plight.
Let's start with what, for most of us, is a simple number of tasks just to get into the mainstream of everyday living ... like brushing our teeth, taking a shower, cutting our toenails, filing our fingernails, combing our hair, shaving, using makeup. All of that isn't even the tip of the iceberg. Example: Bathrooms aren't built in normal homes to accommodate a wheelchair (oh, in some cases people with money will rebuild and makes things easier for the child and themselves). Just getting through the bathroom door isn't all that's involved. Space is needed for a chair to turn, or for a child to be carried and dealt with out of the chair. It's still only the early hours of the day and already I am beginning to feel trapped and suffocated trying to visit that bathroom.

Being in a wheelchair makes you feel like everyone is whispering about you. I know there are many who couldn't care less and many who are so indifferent that it hurts -- not a great deal, but enough to notice.
I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I'm not as fortunate as they are, and I bet I'm in the majority. I'd like to play basketball like normal, healthy, vital, and energetic people. I really don't want the substitute. I just can't half-do anything -- either it's all the way, or forget it. That's a rough way to think in my position. When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being a half a person ... and get on with my life.
I may be a full human being in my heart and soul, yet I am still half a person, and I know I'll do well if I keep my priorities in order. You really cannot expect the outside world to assist you in more ways than they already do, and I'm most grateful for the help I receive. But I always have the feeling in the pit of my stomach that I want to scream out "Help!" Or,
"See what has happened to me!" Or, "Is anyone watching?" But those screams are usually muffled by the inner voice that tells me what to do and when, and tells me softly and strongly: "Be still ... Hush ... Drive quietly ... Try to make as few waves as possible.

Lewis truly felt children and adults with disabilities were charity cases. They had no right to expect equality. The constructed environment was not accessible. This was just the way it is and any accommodations were made out of the goodness of the non-disabled--the normal, healthy vital and energetic people. People with a disability were not human in Lewis estimation. They were trotted out and put on display once a year so that others, non disabled others, could feel better about themselves.

When I think of Jerry Lewis, I remember an angry difficult man. In 2016 he gave a reporter the most painful interview I can recall ever watching:

I am breaking an old taboo--speaking ill of the dead. I am however only speaking about one side of the man. My words are not about Lewis alone but of an era when all people with a disability had no rights. We people with a disability could not attend public school, get on a bus, train or plane. We were warehoused in institutions like the infamous Willowbrook Institution. The history of people with a disability is only just now being taught at some universities. American history and disability history are synonymous but few books like Kim E. Nielsen's A Disability History of the United States exist. Rather than harp on what a rotten person Jerry Lewis was, I instead think of him as a symbol of an era that is thankfully a thing of the past. A past that is grim and I mourn for an untold number of lives that were needlessly compromised. Jerry Lewis did not live in a vacuum. Millions of people gave money to the the MDA who likely shared the same views of disability that Lewis did. It is my hope we live in a more enlightened era but I find that impossible to believe after reading an article in Mother Jones about the future of genetically engineered children. The invention of CRISPR, a tool that allows scientists to change DNA sequences within a cell and hence edit the human genome could be used to eradicate a host of conditions such as Huntington Disease and Tay Sachs. Link: My first thought of course is if we eliminate a condition are we eliminating a people. That thought makes me shake in fear. People with a disability can be eliminated before they are born. A Gattica like existence is around the corner and I know people like me might no longer exist.