This is the second in a series of three articles about Jerry Lewis and the Muscular Dystrophy Association.
In part one, I spoke about the promises that the Muscular Dystrophy Association makes to both the people who donate the money that supports the organization and the individuals who live with Muscular Dystrophy every day.
Let us now turn to information about the Labor Day Telethon and Jerry Lewis before moving to the third article, which is a much more personal look at the MDA from the standpoint of a life partner, caretaker, and best friend to a wonderful 25-year-old male with Muscular Dystrophy, my boyfriend Dominick.
The Telethon
MDA runs an annual telethon, which could mean the chance to shine, if you are a child, on a national or at least a local level. It is one of the many ways that MDA raises money throughout the year, though they make it seem as if it is the only way. During the year, there are numerous events which add to the collective pot-o-money that the MDA makes. The telethon is just the best-known fundraising event and gives fundraisers the chance to brag about how much they have given to MDA this year.
This is the number one reason Jerry’s Orphans do not support the MDA. The telethon is there to raise money and, according to Jerry Lewis, unless the MDA evokes pity for the disabled, they will not make any money to help them. (Jerry’s Orphans are a group that feels the MDA telethon promotes a message of pity and weakness among the disabled.)
Unfortunately, that means many children are exploited for their beauty and/or their wheelchair. If they are able to walk, many of these children stand and listen in horror as Jerry explains that they will never be normal despite their current abilities. These children will always be different and there is no real hope for them without the support of the able-bodied money-giving person.
Anyone who has watched the telethon has heard Jerry’s spiel. Imagine how these children feel when they hear it. To some, it becomes second nature. To most, they assume it is their reality.
Article comments
— go to most recent comments1 - jackie
Personal attacks are not allowed?? I have no personal attacks to offer. How do I know that the attacks on Jerry Lewis are true?
2 - Dominick Evans
This is a new one on Me, but I wish we would have been able to add this. We've now been compared to Hezbollah or Iraqi terrorists by Jerry Lewis.
"In an interview last week with the Tribune at the South Coast hotel-ca$ino, Lewis said he has no intention of making peace with his detractors. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.
"Oh God, why should I?" he asked."
3 - Dominick Evans
Jackie,
You can click the links to see sources where this information came from. It is not meant to be a personal attack. It is meant to bring light to a situation that the MDA has been trying to cover up since the 1990's.
Fact - Jerry Lewis admits he wrote the Parade article.
Fact - You can find numerous sources and recordings of Jerry Lewis calling disabled protesters "cripples" and "living water beds".
He also claims he bought us all wheelchairs.
Jerry did not buy my first two wheelchairs for me. He only bought the third, used wheelchair...or rather MDA did....after months and years of begging MDA for help. Unfortunately it was too late and I spend more time in bed then out...due to damage from the old wheelchair.
THAT is a FACT.
I am a former MDA Poster Child for NW Ohio and State of Ohio. I gave my life to MDA from 1990-1999. I probably would have continued to give, but once I wasn't "profitable" enough they stopped inviting me to events or the telethon in lieu of more air time to "new kids".
Frankly, after helping to raise thousands of dollars, I am saddened I wasted my youth on MDA only to have them turn their backs on me when I needed them the most.
I would hate to see this happen to the new kids representing MDA...and unfortunately I'm not the only poster child who feels that way. (Look up Laura Hershey).
4 - Jack
The fact you gave your life to MDA from 1990 thru 1999 gives you and your opinions a tremendous amount of credibility. Nevertheless I felt things were being overlooked by this article.
From the MDA website: The first incarnation of what would be the MDA Telethon was in the form of a series of specials produced in the 1950s, some featuring Jerry Lewis with partner Dean Martin.
The first Telethon was held in June 1955 at Carnegie Hall in New York.
The first MDA Labor Day Telethon was broadcast in 1966 by one station in New York City.
Jerry Lewis is an old school guy, who's been doing this since the 50's. By anybody's account, the man is arrogant and always has been. He's also someone with tremendous talent and a tremendous will who has been a force to be reckoned with for a very long, long time.
He's blunt, he thinks he knows how to do things, and there's exactly one thing that will stop him, and only one. His death.
Most of his fiercest critics will not do one thousandth of what he's done to make a difference, even as they bemoan the fact that what he has done isn't what they would've done, if only, if only.
The man has been humbled, if in fact that's possible, by illness, infirmity, and disease, and he won't be around much longer to irritate the shit out of you, and those who feel likewise.
At least you have that.
5 - Dominick Evans
Here is more comments Jerry has made. I don't know how reliable Vanity Fair is for you, but I'm sure the article can be found at the library.
Additionally, I think I have the 91 telethon on tape, but aren't sure I have the whole thing. I'll have to look since my dad used to tape the years when I was poster child...and I was for NW Ohio in 91.
During the 1991 MDA Telethon, Lewis said that if a person is diagnosed with the disability called amyotrophic lateral sclerosis (ALS):
"You might as well put a gun in your mouth."
The following quotes come from Leslie Bennetts' article, "Jerry v. the Kids," Vanity Fair, September 1993:
About his critics: "It just kills me to think about these people getting publicity. These people are leeches. They all glommed on to being Jerry-bashers. What did they have before that? They're disabled people who are so bitter at the bad hand they've been dealt that they have to take down somebody who's doing good. There's 19 of them, but these people can hurt what I have built for 45 years. There's a million and a half people who depend on what I do!
"I've raised one billion three hundred million dollars. These 19 people don't want me to do that. They want me to stop now? Fuck them. Do it in caps. FUCK THEM."
I bet he wasn't saying that when we were all poster children raising money for him. You can check out this link from former poster child Laura Hershey.
6 - Dominick Evans
Jack,
I don't wish for Jerry to be dead. I don't hate him. I just feel that he has been very negative in his portrayal of people with disabilities.
If it had been any other celebrity saying something about another minority group (just look at the Mel Gibson debacle), Jerry would be held accountable for his actions.
Yet the answer by CBS was to re-edit his appearance to show it again and take out his hurtful comments rather than call him on it.
Now he's comparing meeting with the disabled to meeting with Iraqi terrorists. I am not a terrorist nor have I ever been one and it somewhat offends me that he would view me as a terrorist threat to his telethon.
In an ideal world Jerry would be held accountable for blantant discrimination.
Try putting yourself in our shoes. What if you were in a wheelchair, were discriminated against, and left to hang high and dry.
How would you feel if someone told you...well all the "good" the MDA says he does outweighs the bad he has caused you or the lies they have told you?
You'd probably be pretty pissed off.
I'm also looking at the fact that there are drugs to help AIDS patients, cancer, and my other afflictions but the cure we've been promised is nowhere near being found.
I personally feel stem cells are the answer though that cannot really be explored, but any time MDA does research it seems they want to give the trials to children not someone who is 25 and for all intents and purposes will probably be dead since this is a "death sentence" right?
Perhaps they already have a cure, but its more profitable to not have one? Who knows? That is one of my own theories, but over 50 years of fundraising and billions of dollars later there isn't even a drug that is showing promise?
As for the website, I don't give it much credibility. If you notice the wheelchair accessible van picture on the equipment page it makes you think that they give you vans right?
MDA does not pay for the purchase of accessible vans or even modifications. In my opinion, the picture is false advertising.
Dominick
7 - Abel
I understand why you wrote this article. You must feel bitter about how you were treated.
The reality in short is that Jerry Lewis has done a tremendous amount for the cause. He may be crass or narrow in his thought on the matter of what it is to be disabled. But, still the same, I believe, he has sincerely tried to make a difference in his fight to help find a cure.
As for MDA, the idea of throwing money at things is not new. Lewis and pro-telethoners are doing it because that is what they believe will work. Is MDA perfect, I don't know that. One thing is for sure, I believe they as a whole have tried to do good. That should be worth something. Has no one ever been help by MDA?
Look, to berade Lewis, the MDA and other such organizations seems counter productive. Your bitterness is very transparent, but again completely understood. I guess, I can only offer that you should try to be the bigger person and have compassion for those that are working to make a difference.
8 - Jack
I doubt ol' "Do It In CAPS" Jerry would've wanted his commentary to be whitewashed by CBS. I think we've learned a lot about CBS in the last couple of years - they're currently struggling to regain some credibility.
I'm not sure how I'd feel in a similar position. I know I wish at least a hundredth of that attention could be focused on Parkinson's Disease, a degenerative disease that claimed my father. I'm pretty sure I wouldn't suspect the MDA of hiding a cure, though.
Nevertheless I think you make a number of good points and I can't say I blame you for feeling marginalized and insulted by Mr. Lewis.
I believe a cure will be found for MD, Parksinson's, Alzheimer's, AIDS, cancer, all of that. It's our final frontier. It's going to happen.
9 - Al Barger
Again, the criticisms in this article are largely baseless. You're mostly just making a scattershot statement of resentment.
Now, the idea of playing on pity is not appealing, and could have some negative repercussions. But then, you're playing to the same stuff- just not willing to admit it.
A lot of this comes down to personal resentment against Jerry Lewis. Why, cause he doesn't do enough? I don't doubt that Lewis takes some personal satisfaction and good feelings from his effort. Good- he deserves that much reward for raising billions of dollars.
This philosophical premise is specifically wrong: "Good people do things because they want to help people, not because they want something out of it." That is flatly against human nature. You might hope for "somethings" other than money - I doubt this effort is makes Jerry Lewis any personal profit. But a warm fuzzy feeling in your heart is certainly an appropriate reward for making the effort.
You also resent him for saying or implying that disabled people are disabled. That's just shooting the messenger. How dare he suggest that people in wheelchairs with crippling diseases don't get to lead complete and fulfilling lives like the rest of us? It's unfair and unfortunate - but nonetheless true. Perhaps he should apologize for noticing. Hey, he's trying his best to do something about it.
Then there's the money stuff. You're making lots of little insidious implications, but saying nearly nothing. The only real specific complaint is that they pay the guy who runs the organization $400K. Why, you could be spending that on Dominick!
Perhaps you need a little perspective. Putting pity for your poor guy aside - as you would supposedly advocate - perhaps the entire MDA doesn't revolve around him.
$400K is not that much to pay for a top quality manager to run a company with hundreds of millions of dollars a year running through it. You COULD get someone to take the job for $30K - but then you'd likely not be getting the best person for the job, would you? Some dumbass that you could hire for a little of nothing would cost a lot more than $400K in any number of directions.
You're just completely 100% off base to resent that the organization emphasizes spending money on research more than on current people with these diseases. Did I mention that the world does not in fact revolve around your no-doubt wonderful Dominick?
It might be better for Dominick if Jerry re-named his event the Dominick Telethon, dedicated to raising money for Dominick. That'd be nice.
But maybe, just maybe, they judge it better to spend a lot of the money coming in on trying to find cures that will save millions of people in the future from suffering rather than bleeding their limited resources dry on helping a few thousand people now who are already screwed.
You're bitching about pity, but that's exactly what you're playing to here. The better rational judgment of how their resources can do the most good should be thrown out the window for Dominick, cause he's suffering now. I, of course, am a heartless bastard for making such criticism - don't I have any pity? No, not if pity for this one unfortunate schmoe is going to end up hurting a bunch of other people.
If your words here cause anyone to not donate to MDA, then you're just cutting off your nose to spite your face. You'll be hurting their ability to help people now - and sentencing people yet unborn to suffering from illness that the MDA could be curing. From anything I've seen in parts I and II of your expose, you and Jerry's Orphans are doing a disservice to sick and disabled people.
10 - RogerMDillon
Got agree with Al on this one.
How much money have Jerry's Orphans raised compared to Jerry? Why don't you start your own telethon if you think he's doing it wrong? Instead of complaining about Jerry, show us a new model that works better. All I saw here was complaints.
Using pity might suck, but unless you can show a better way to raise money, he's probably going to stick with it. If he said, these kids will have great lives, no different from you or me, the average person watching will think, "if this kid is going to have the same life as me, why should I bother giving money?" Also, couldn't you tell the kids what the score is, so they don't develop self-pity?
"Children expolited for their beauty". Jerry didn't invent that. Society has done this since there's been children, and it happens to adults as well.
I hope Jerry's Orphans have paid back all the money they received through MDA, so their convictions can be taken seriously.
11 - Dominick Evans
Roger,
Actually I have started work on an organization to help raise money. My goal is to make a true non-profit run by non-paid volunteers.
One day I hope to have a program that:
# Medical Equipment - Funding for wheelchairs, hoyer lifts, van ramps, walkers, leg braces, commodes, bath chairs, etc.
# Technological Equipment - Adapted computer software, keyboards, mice, screens, voice automated software, automatic door locks, etc.
# Camp - Camp for both children and adults with Muscular Dystrophy.
# Care Services - Volunteer emergency care if needed in the community you live in.
# Medical Services - A special clinic for eye exams, dentists, and other medican services that cannot be performed in the average doctor's office.
# Transportation Services - Annual Van Purchasing assistance, wheelchair accessible transport.
# Advocate Services - Helping indivdiuals that have been discriminated against find legal council or the right agency where they can advocate for their rights.
# Emotional Support - Psychological Services, Support Groups, Community Awareness Programs.
# Home Modifications - Bathrooms, Kitchens, Door widths, Grab Bars, voice automated services, ramps, etc.
I'm just getting started and due to health problems that keep me in bed most of the time, haven't been able to get as much going as I would like, but I won't give up.
Dominick
12 - RogerMDillon
Good luck with your efforts, D.
13 - Dominick Evans
Roger,
Thank you! I am very determined and willing to work hard to get things going. I don't want anyone to think all we do is just sit and complain without trying to make a difference and change things.
I also don't want to be considered half a person because I'm not. I can do just as much as the abled-bodied people in the world can if not more. I just do it differently and adapt to the changes.
I've developed an "I can" attitude but feel MDA has profitted off of the "I can't" model.
If you saw some of the extraoridinary things people in wheelchairs are doing you'd be amazed. Why can't they use those things to get money? Without equipment that works we have less opportunity BUT amazing potential....that is wasted.
Instead of saying there is no potential there at all which is what MDA does.
Dominick
14 - Al Barger
Good luck Dominick, but you're never, ever going to have a serious major organization without anyone getting paid. Right there, you're just not dealing with reality. You might find people who are not particularly motivated by money - and I don't see any indication that that Jerry's people are so motivated.
Nonetheless, even kind hearted folk with love in their heart have to eat. You might find people willing to work for less than commercial wages. That's real nice. Still, they have to pay rent. Or do you think that non-professionals with outside jobs dinking around for a few hours a week on the side can seriously and properly run a major organization?
At some point, this stuff IS business. There's money and contracts, and if you're going to do any good, it has to be run like one. You may resent that people need to be paid, but which is more important: your philosophical satisfaction that nobody's getting paid, or actually doing the most good possible for sick people?
Bind not the mouths of the oxen that tread the grain.
15 - Dominick Evans
Abel,
I didn't write this and neither of us our bitter. If Ashtyn was, she would have listed a more personal take on her feelings of Jerry Lewis as a man.
Instead, she tried to present the facts and her take on his actions as opposed to Jerry as a person.
If Jerry were ...the spokesperson of the NAACP and made racist comments I bet complaints would have gone through the roof.
Its about equality and the MDA perpetuates the disabled are second class citizens stereotypes.
I'm not half. I am not bitter I am in a chair. I never have been. In fact, I'd rather it be me then someone else who would not be able to handle it. I'm strong and a fighter and will deal with anything and everything that comes my way, but I will not accept pity. I don't want it.
None of us do.
Dominick
16 - Dominick Evans
Al,
I wouldn't take a dime myself. I understand that people in big organizations do get paid. However, there are ways around it. You can maximize a profit and other organizations have succeeded at doing so.
Perhaps I will prove you wrong or perhaps not, but know that if I ever did have to pay employees it would be extremely limited.
With enough volunteers anything is possible and if I have to do everything planning wise myself then I'll do it myself. I've worked tirelessly on fundraisers before. It won't be any different because I didn't get paid then either.
I luckily enough have a RT job that is flexible enough to devote what time I can to all the different things I want to accomplish in my life.
Dominick
17 - TOM
I have epilepsy understand your how you feel but I would be very happy if someone like Jerry Lewis would come along and raise money for Epilepsy to find a cure,
18 - Ruvy in Jerusalem
TOM,
A curee for epilepsy will be found through the application of stem cell therapy to the brain, because epilepsy is usually the result of a brain injury resulting in an electrical imbalance in the brain. The seizures are symptoms of the imbalances, sort of an electrical surge running through the brain.
If stem cells can be developed that will grow into brain cells that effectively heal the brain injury, then hopefully, the imbalance will be removed.
The question is whether someone will be able to get the proper funding to do the proper research for this. Drug companies make a fortune off of anti-seizure medication, and may well oppose such studies...
19 - Nancy
With the huge amounts of money this organization has suckered in over the years, by now MD should be an extinct disease, with cures and preventions. This entire so-called "charity" is nothing more than just another scam that uses the disabled to rake in big bucks so those in charge can continue to live on the scale to which they've become accustomed. Jerry Lewis should be ashamed to be associated with this farce, let alone cheerleading it.
20 - Dominick Evans
Nancy,
Leslie Bennetts did a article on Jerry Lewis and it went quite in depth into both sides of the "Jerry's Kids" and "Jerry's Orphans" debate.
One interesting point Ms. Bennetts (of the New York Times) made was discussion of what Jerry gets out of being the sponsor.
All they could determine was while he does an awful lot of travel, the MDA does not have the "figures" available to show how much actually goes to Jerry's travel expenses.
I'd love to see those numbers.
You can check out a copy of the article here:
Its a must read in my opinion.
Dominick
21 - Nancy
As I said, with the enormous amounts of money they've garnered over the years - the W.P. reported this morning that they've taken in a total of over 1.3 BILLION over the past 40 years - they ought to have a cure by now. I suspect they aren't trying very hard, because when & if they ever do come up with one, they'll all be out of an easy & comfortable way of life. This and all other 'charities' like them ought to be shot down by the IRS.
22 - Braniff
I'm surprised there's been relatively little investigative reporting by the news media. Were such investigative reporters as Bartlett and Steele (longtime reporters of the Philadelphia Inquirer), R. W. Apple, or especially Bob Woodward, Carl Bernstein and Scott Armstrong (with the Washington Post), looking into how the Muscular Dystrophy Association and other charities were spending our money (that's right--OUR MONEY), perhaps there's be some change. But the people who run the telethons, the entertainment people and the business people have lots of clout--enough to keep the investigations under control.
Moreover, I fear that the public would not care as much as they did during the days of the Watergate, Iran-Contra and CIA scandals.
23 - Nancy
Well, look at the fraud & misdirection by even such previously respected organizations as the Red Cross (using 9/11 donations to defray organizational business expenses) and more notoriously United Way. It seems to me that any organization that spends less than 85% of its funding on administration should have its 501 status yanked, and fast. And no, there is NO justification for paying the CEOs or any other personnel top dollar. Presumably, they work there not for profit but for the cause. If they're there for the income, they're in the wrong business & shouldn't be there. Charities should not be run just like any other [for-profit] corporate organization, because they're NOT.
24 - Dominick Evans
Whoops - that link didn't work that I provided.
When you click the link up above for the story it is under Z-ARTICLES from the Web. It's called Jerry vs. The Kids
Or you can look up Jerry vs. the Kids by Leslie Bennetts to get to it.
Nancy - I am glad to see Ash & I are not alone in our beliefs of why there wouldn't be a cure....MDA would go out of business.
Dominick
25 - Martin Lav
Jerry Lewis is a bloated old ego-maniac that has the ability to suck the blood out of a turnip that he helped to create. While I have no doubt he is insensitive, egotistical and rude, he does have the power of draw and although you'd much prefer to throw up on his shoes, you'd do well to fall on his feet.