People with Muscular Dystrophy Protesting Jerry Lewis

Posted on 11 January 2009. Filed under: Advocacy | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |

People from outside the disability community, and even some people with disabilities, often wonder what people with muscular dystrophy themselves think of all the protests against Jerry Lewis’ annual telethon and Jerry’s upcoming humanitarian award. After all, Jerry’s fund raising efforts are meant to help them–aren’t they?

Some people with muscular dystrophy, and their families, do in fact support the telethon. But it may surprise some people to realize that people with muscular dystrophy are consistently among the most out-spoken leaders in the protest movement against Jerry’s annual telethon. And they are once again in the forefront of protesting the choice to give Jerry a humanitarian award this February 22, 2009. The person who founded the Facebook group coordinating the current protests, Laura Hershey, used to be a poster child in Jerry’s telethon. Some of the people signing the petition protesting Jerry’s award have identified themselves as people with muscular dystrophy, or as people who know someone close to them with MD.

Follow the links below to various blog posts and newspaper articles to hear the voices of people with muscular dystrophy themselves explaining why they feel that Jerry’s telethon–and the pity that it generates–does more harm than good. At the bottom, I have also collected some quotes from people signing the petition protesting Jerry’s humanitarian award.

From Poster Child to Protester
http://www.cripcommentary.com/frompost.html
Once, Laura Hershey was a little girl with muscular dystrophy and one of many “poster children” in Jerry’s annual telethon. Now she is one of a growing number of former poster children who has worked tirelessly for years protesting the manner in which Jerry promotes pity. Read her story, which she wrote in 1993. And, no, her involvement with the protests didn’t stop there: Laura Hershey happens to be the woman who established the Facebook Group coordinating protests against Jerry’s award in December 2008.

The Kids are Alright
http://www.thekidsareallright.org/
Mike Ervin was a “Jerry’s Kids” poster child in the 1960s. Today, he protests the way that the Muscular Dystrophy Association, and Jerry’s telethon, have portrayed people with muscular dystrophy in the quest for charitable donations. Read about a half-hour documentary analyzing how pity makes it harder to advance true social equality.

Disability Activists Demand an End to Jerry’s Labor Day Pity Party
http://www.niagarafallsreporter.com/croisdale294.html
This article shares more about the story of Mike Ervin and his sister–both of whom were used as Jerry’s “poster children” in the 1960s, and both of whom are now active in protesting the telethon.

No Longer One of Jerry’s Kids
http://www.washingtonpost.com/wp-dyn/content/article/2007/08/31/AR2007083101273.html?hpid=opinionsbox1
A former poster child, Ben Mattlin, explains why he now protests against the same telethon he had appeared in when he was six years old.

Telethon’s Cost is in Dignity
http://www.thestar.com/article/489291
Harriet McBride, who had a muscle-wasting condition, was one of the key leaders of protests against Jerry’s Telethon until she died last year age age 50. This article tells the story.

Jerry Lewis’ Unforgivable Harm to Young People
http://notdeadyetnewscommentary.blogspot.com/2007/09/jerry-lewis-unforgivable-harm-to-young.html
Diane Coleman, a woman with a neuromuscular condition who is the founder and President of Not Dead Yet, writes about how Jerry Lewis has promoted the idea that people with disabilities are simply better off dead.

From a place of love
http://crip-power.com/2007/09/02/72/
A young woman with muscular dystrophy writes about the evolution of her identity as a person with disabilities and why she opposes a telethon “drenched in pity.”

Guest blogger at “If the World Had Wheels”
http://karasheridan.com/?p=165
A young competitive swimmer with muscular dystrophy shares her thoughts on Jerry’s telethon in this guest blog spot.

Tom and Jerry and other Telethon Stories
http://davehingsburger.blogspot.com/2007/09/tom-and-jerry-and-other-telethon.html
Dave at “Chewing the Fat” shares several stories related to Jerry’s annual telethon; among them are comments he once heard about the telethon from a young boy with muscular dystrophy.

Signatures in the Petition Protesting Jerry’s Award
A number of people signing the petition against Jerry’s humanitarian award have indicated that they themselves have muscular dystrophy, or were once one of “Jerry’s kids,” or are close to someone with muscular dystrophy. Here are a few examples I’ve noticed:

The comment with signature #1060 says: “As a person with muscular dystrohpy, i strongly object to the presentation of any humanitarian award to Jerry Lewis. Jerry Lewis and the MDA have actively fought against the progress of the disability rights movement and have acted only in self interest to appear as “humanitarians”. He is protested against by people with muscular dystrophy themselves every year. Could we be any more clear?”

The comment with signature #911 says: “I personally know people with MD. They are hardworking and intelligent people who deserve to be viewed as contributing members of their communities. If the telethon producers want to be supportive they need to show how the money can be used to purchase equipment or services which will enhance independence. Adults with disabilities are sick and tired of being viewed and treated as “kids”. Stars like Jerry Lewis have a strong influence on public perception and opinion. They need to use that influence to help reverse stereotypical thinking. It is this type thicking which promotes fear and subsequently, discrimination”

The comment with signature #656 says: “My son was considered for National Poster child – he knew Jerry Lewis, Bob Ross, Jerry Weinurg – when he passed away there was nothing from them- no acknowledgemnt at at.”

The comment with signature #626 says: “I have muscular dystrophy and I am offended at the way jerry lewis has characterized and caricatured those of us who have this disease. Jerry is a bigot. Raising money, in the manner he does, and using it for a humanitarian cause DOES NOT make him a humanitarian!”

The comment with signature #586 says: “I have a form of muscular dystrophy and I am gay therefore iI cannot possibly support this award going to someone who perpetuates pity and inequality to people like myself.”

The comment with signature #544 says: “As a person with MD I abhor Jerry Lewis’s negative stereotyping of my people and his belief that we are useless”

The comment with signature #344 says this: “As a former “Jerry’s Kid” I know first-hand the harm that Mr. Lewis has done to people with disabilities! He deserves no reward for humanitarian efforts and instead should be more scrutinized for his de-huminizing attitudes towards people with disabililties (and other groups.)” (The emphasis is added.)

The comment with signature #292 says this: “I am a 64-year-old woman with muscular dystrophy, and I have found the telethons humiliating since I was a young woman. They give false hope to parents and turn individuals with disabilities into childlike, charity figures. I’m retired, but managed to work all my life.”

The comment with signature #267 says: “If Mr. Lewis thinks tyhat people with MD cannot work, then he needs to meet my friend with MD who is an electronic enginerr for the Air Force designing radar and weapons systems. She is far from stupid.”

The comment with signature #236 says: “My boss of two years has MD. Attitudes and comments like Jerry Lewis’s diminish the the capabilty and accomplishments of people with MD in the eyes of the public. His work is NOT humanitarian.”

The comment with signature #190 says: “I personally know several people with Muscular Dystrophy who are gainfully employed. Jerry Lewis is wrong and paternalistic.”

The comment with signature #126 says: “As someone with a neuromuscular disability, I am among the many Jerry Lewis has labeled “half a person.” Someone who denies the full personhood of others does not deserve to be recognized as a humanitarian.”

The comment with signature #88 says: “Jerry Lewis treated me like crap while I was an MDA ‘poster girl’ in 1977. He never stopped smoking around his ‘kids’ and refused to talk to us or give an autograph. He treated us like prop objects to make his image look good instead of kids who adored him. It was a crushing momment for a seven year old.”

The comment with signature #82 says: “As a disability advocate (for the past 35 years) and a person with Spinal Muscular Atrophy (a form of Muscular Dystrophy) I find the tactics and rhetoric used by Jerry Lewis personally offensive and degrading.”




Read “Cancel Humanitarian Award for Jerry Lewis Petition” at http://www.petitiononline.com/jlno2009/petition.html

Sign the petition at http://www.petitiononline.com/jlno2009/petition-sign.html

Join the Facebook Group, “Tell Oscar — NO humanitarian award for Jerry Lewis!” at http://www.facebook.com/group.php?gid=40538392681

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10 Responses to “People with Muscular Dystrophy Protesting Jerry Lewis”

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we had a great blogswarm in 2007 with over 50 different people writing about the telethon but kara’s website is down? will contact her now and see what’s up.

thank you for this.

I’m a researcher with SMA and have worked on spinal muscular atrophy with support of the Muscular Dystrophy Foundation. I have 30 years of experience in cancer research as well. The MDA is an exceptionally efficient research organization. Compared to Cancer research, the progress being made by MDA sponsored research is phenomenal.

The MDA provides critical, nimble, flexible, and FAST research support. Doubling donations to MDA would greatly reduce the time we all need to wait for treaments. I can make you a list of the different things we could try if there were more funding.

The involvement of families in generating support for this research is critical to treatments that are now becoming a reality. Having met hundreds of families and children with SMA, there is nothing Jerry Lewis does that overstates the impact of this disease on individuals and families. The telethon far understates the reality that many of the families and patients face. The government is funding research on MD and SMA at levels far, far below their impact and prevalence.

I’ll be a poster child for Jerry Lewis anytime. MD and SMA are not diseases to be lived with, they are diseases to be treated and cured, and I thank Jerry Lewis and all the volunteers and people who donate to MDA for helping me change my mind.

Ron, you say, ” … there is nothing Jerry Lewis does that overstates the impact of this disease on individuals and families.”

So does this mean you agree with Jerry’s statement that having MD automatically makes you “half a person” who cannot possibly gain pleasure in life? Because, if you had followed the links to what people with MD themselves say in the blog post above, you would see that they all disagree with such characterizations.

My opinion of the telethon changed quite dramatically once I started seeing the many researchers, clinicians, patients and families that are impacted by MD and SMA.

Redirect the anger about Jerry to Congressmen and Senators who refuse to sponsor research for MD and SMA.

Ron:

Personally, I’m not opposed to doing research on MD. And I suspect that most other people involved in these protests are not opposed to this kind of research either. What we’re objecting to are two things:

1. Sometimes there can be an OVER emphasis on prevention and cure, when these are NOT the only things that people with disabilities need. We also need things like respect, dignity, appropriate accommodations, techonology, ACCESSIBILITY, and employment opportunities. Even assuming treatments and cures work (and that every person with the condition you’re targeting necessarily still wants them by the time they’re ready), it usually takes decades to get to that point. Meanwhile, we still have to move on with our lives, Cure and treatment cannot be the exclusive focus: human rights are also critical, and usually have a much more immediate impact on our lives.

2. There are better ways raise funds. It’s fine to raise funds, and it’s fine to invest a certain portion of those funds into research, treatment, medical interventions, mobility devices, etc. (as long as there is also some funding going into things like enforcing the Americans with Disabilities Act and so forth). But it should not be done in such a pity-drenched way that you end up simultanenously destroying progress in so many OTHER areas that still matter so much in the lives of people with all disabilities.

Think of it like this: Suppose there were a way to cure 100 people who are suffering from a disease (we can say that disease is MD, or malaria, or whatever). But in the process of curing those 100 people, we make it enormously more difficult for 10,000 people — INCLUDING those 100 people who we are treating — to find jobs that enable them to lead productive lives. That’s exactly the kind of thing Jerry does every year with his annual telethon: yes, he’s raising money for medical research, but he is also perpetuating EXACTLY the kind of negative images about disabilities that make employers not want to hire us as workers.

Now let’s suppose we switched fund raising stragies so that maybe you raise less money, but create a more positive image of people with disabilities. You’re treating 50 people …. but now 10,000 people have jobs, and have more of an income that they can use to support further treatment research … so now you end up treating 200 people instead. Isn’t that a better strategy, in the long run?

I challenge you, Ron: have you actually READ the things said by the people MOST DIRECTLY AFFECTED BY MUSCULAR DYSTROPHY? I have supplied a number of relevant links in the blog post above. If you haven’t already, please do follow them. You claim to be working on behalf of people with MD. Shouldn’t you therefore be listening to them, even when they say things that maybe are uncomfortable for you to hear?

I also challenge you to read Protest Pity, which explains more clearly the difference between “pity” and “empathy”; why Jerry’s brand of pity is so very destructive; and why real empathy is more likely to bring about human rights.

I have no problem with your being involved with the reserach side of things. I DO have a major problem with your conception that the ends (investment in funding) automatically justify the means (the perpetuation of negative stereotypes that harm ALL people with disabilities, not only people with muscular dystrophy).

No matter the cause, someone always has to complain.

Why should we expect things to be different with MDA?

Frankly, I’ve never felt pity for anyone afflicted with any medical condition. Have I wished I could do more to help? Yes! Because I always want to be a part of any group which benefits Man.

Aren’t we blessed Biblically when we help those in need?

I have read most of the comments and i have limb girdle md but still i dont get if jerry is helping raise money for the cause its just helping to find a cure faster i also believe that there is a cure but the government wont tell us because it would cost them billions of dollars, so why hate on jerry if hes just trying to raise money?

[...] from, but in the US we have this "Jerry's Kids" telethon that thrives on nothing but pity donations.) I understand being downright exhausted from society's notions, and this isn't your fight. I [...]

I understand, to some degree, how you all feel toward Jerry Lewis. He has seemed to use “his kids” and this telethon to further his “respect” in the world. He has always been mean spirited and so it affected his relationships with the children he seemed to adore who were on this program. I knew a young man who was in high school and in a wheel chair, who is now an attorney in our town. When I first met him I felt terrible for him, being of the belief that, as shown on the telethon, his days and activities would be limited. Bravo!! for all of you who went beyond the bias and are standing up for yourselves and your issues. As a disabled adult I know people often feel our mental “condition” is compromised as is the body. But we are all doing and holding strong for what we believe in. My question is, how much money did Jerry Lewis make from the telethon. I have wondered that for years. He has never been a major player in “Hollywood” since his days with Dean Martin. And so, does anyone know if he had an income from helping “his kids”? God be with each and every one of you and continue to give you strength and direction.

i have beckers md, lost my fam,couldnt pay bills ,no kind of help from mda , the money raised shur doesnt help the ones who have it n feel the pain .I believe they can cure,but why they would loose alot of money ,n not get there fucking new bmw every year,not fair ,wont even help me get a fucking wheel chair,or a gun 2 blow my fucking brains out,cause no other way out,n no support .fuck u finding a cure mda


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