For those of us who remember life before cable TV, Labor day weekend always meant one thing: Jerry Lewis on every damn channel raising money for ‘his kids’. This year, the veteran entertainer for the first time in decades will not be running the iconic telethon and has been ousted as National Chairman of the Muscular Dystrophy Association (MDA), a post he held for over 60 years. Over the years, Lewis’ telethon raised over 2.5 billion dollars for the MDA. Many people have hailed Lewis as a hero for ‘his kids’, and there has been consternation and sympathy for Lewis over this move.
However, you may not be aware of the efforts over the last 2 decades from disability rights activists to remove Lewis from this position, and their disdain and resentment towards him.
The late Laura Hershey, disability rights activist, author, person with MD and former MDA ‘poster child’ wrote From Poster Child to Protester in 1993. In this groundbreaking essay, she describes the humiliation and inherent ghettoization of the MDA telethon. People with disabilities are set up to be ‘pitied’ and the emphasis of MDA fundraising is on ‘cure’ – not in improving the quality of life for people with disabilities. People with disabilities are infantilized and belittled in the name of raising money. Often, people who are educated and accomplished would be portrayed as helpless and a strain on their loved ones in an effort to instill feelings of pity, and thus open wallets. The emphasis is always on what people with disabilities cannot do, rather than how they can be assisted to reach their full potential by removing societal barriers.
“The Trouble With Jerry”
Jerry Lewis had no problem with the ‘pity’ angle. Responding to protesters in 2001 who decried his methods, Lewis famously responded, “I’m telling people about a child in trouble! If it’s pity, we’ll get some money. I’m just giving you facts!…Pity? [If] you don’t want to be pitied because you’re a cripple in a wheelchair, stay in ya house!”
People with disabilities constantly struggle with pity and infantilization. For a major figurehead and spokesperson for a disability to tell people to ‘stay out of sight’ and even to use the word ‘crippled’, is an outrageous insult. The history of people with disabilities is one of shunning – human beings dropped of at institutions as children, often never to see their families again; forced and unconsented medical experimentation; forced sterilization so they would not pass on their ‘defective’ genes as well as outright euthanasia. Since the 1970’s disability rights activists have fought against these abuses and have worked hard to instill pride and hope in people with disabilities, despite the huge social and physical barriers that they face on a daily basis.
The message that Hershey and other disability rights activists would like more people to hear is that people with disabilities are people first. They have talents and shortcomings as all human do. They are not objects of pity or scorn. Subscribing to the Social Model of Disability, they believe that people are not ‘disabled’ by injury or illness, but by the physical and societal barriers placed in their way. ‘Disability’ is a social construct, not an absolute condition.
It is telling however, that the articles about Lewis’ ouster give scant or no attention to this controversy. Comedians and other entertainers bemoan Lewis’ treatment and people mourn the ‘end of an era’, but few articles mention the protest by disability rights activists over his Jean Herscholt Humanitarian award in 2009. Even fewer mention some of his more choice quotes about people with disabilities. Including his highly inaccurate statement that people with MD “cannot go into the workplace. There is nothing they can do.” Or, if he had MD he would have to “learn to try to be good at being half a person”.
It’s commendable to raise money for research to look for medical treatments for a disease that shortens life expectancy considerably. But to do so by using children with disabilities as props and painting people with disabilities as worthless and pitiable members of society is an era and a precedent which will hopefully end this weekend
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