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.
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.
Many children fight so hard for the MDA because they really do believe what the MDA says. They are different, they need help, and they are nothing without you. The sad fact of the matter is that this message of pity only perpetuates self-pity in the disabled community. This is supported by the fact that 70% of the disabled community is unemployed or they lack the skills to become gainfully employed.
One only needs to look at the telethon to understand how a child could grow up and be unwilling to face the challenges of being different in a cruel and taunting world. When organizations like MDA make children listen to this and beg for a “normal” person’s help, it sends the message that they are not normal. It sends the message that they are worth nothing. So, when it comes time to become something, what else are they going to do but sit in their house and wait to die? According to the telethons each year, that is all many of them can do.
Additionally, the money raised by the telethon is more for finding a cure than it is for extending the quality of life a person has. Why not split the money? The MDA is so quick to offer statistics about when people are going to die and how many people’s lives this disease affects, so why not make their lives better while they are here?
I think most disabled people would appreciate the fact that they have a chance to live in a house without barriers or have specific equipment or care that insurance will not pay for that they obviously need. A cure is nice, but if you think you are going to die, and you know how you are going to die when you do, then the idea of spending millions in research for years on end with no cure in sight before you die is not a comforting thought.
The Cost of MDA
MDA is one of the most wealthy privately-owned charity organizations. They receive millions of dollars per year. In fact, their total assets for last year were $215,198,168.
If you consider all things logically, it would be simple to split this money between research, care, equipment, and summer camps. Even if you only helped those in some areas based on the most need you would still be able to better the situations of many people.
However, charities cost money to run. It is currently unclear just how much money MDA brings in and spends for certain. The information presented here is only as correct as MDA has presented it, but there have been questions in the past about their funding and spending practices. Of course, it is rare for MDA to make their financial information readily available when requested.
Their financial discrepancies are clear when you compare totals listed in this article and examine the Better Business Bureau’s charity report on MDA. Of course, it could just be that this has not been updated since March of 2005.
It is known that the CEO of MDA makes $399,321 annually. To give you an idea of how much money that is to a disabled person, you could buy at least 16 top of the line wheelchairs ($25,000 a piece) with that money. Additionally, over $12 million is spent on paying all of MDA employees. At least 1,355 people are paid to work for MDA while the rest, many disabled themselves or families of disabled people, are not paid for their time or hard work. Additional costs can be viewed here.
Disabled people receive numerous flyers per year from the MDA begging for money. This seems a bit odd considering that the money is supposedly being raised to help them. Other mail sent is to ask for help in fundraising by working at events and the telethons because their paid staff cannot do everything.
Jerry Lewis is known for being a comedian and actor, but he is also known for his MDA telethons. Jerry has worked tirelessly for the disabled community in hopes of finding a cure. However, Jerry has also cut down and demoralized the disabled, likening them to people that are less than human because they are not normal.
In an article written by Lewis entitled “If I Had Muscular Dystrophy”, he explains how he would feel if he woke up tomorrow in that steel imprisonment that is a wheelchair. He goes on to explain that he would be worn out relatively quickly because most homes have far too many barriers for the disabled. I think all disabled and aware able-bodied individuals could agree with that. The problem, and perhaps the true colors of Mr. Lewis, arrives later in the article when he says things that most people will not admit to thinking.
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.
It becomes questionable why Jerry Lewis is helping these half-people. One might assume it was to further his career or to make himself feel good. After all, many able-bodied people believe they are good people because they help that wheelchair-bound woman get her Coco Puffs on the shelf she can’t reach. The truth of the matter is that these actions do not make you a good person.
Good people do things because they want to help people, not because they want something out of it. Based on the things we have heard about Jerry Lewis, we can only assume he helps people just to say he helps them, not because he values their input or their lives. If he were to do that, he would have to see them as complete people and not genetically mutated individuals.
If this were one isolated incident, people might assume that Jerry was just going off on a mid-life crisis or was not having a good day, but has since recovered. Unfortunately, that article set many disabled people off and Jerry has not taken to criticism kindly.
When disabled picketers arrive at MDA-sponsored events, Jerry has a tendency to be unfriendly. In the past, he has informed the disabled community not to leave their homes if they do not want pity. And just recently, he referred to a woman in a wheelchair as a “living waterbed.”
Many in the disabled community want Jerry Lewis removed from the MDA for his comments and his actions towards the disabled. Many able-bodied people think the disabled should shut up and graciously accept all that Jerry has done for them.
Meanwhile, I sit on the other side of the fence. I am able-bodied for myself and for someone I love. I am my own legs and Dominick’s, too. I think MDA needs to be reworked drastically because the focus on the disabled is gone. The telethon and the MDA were never meant to be about Jerry Lewis, bigotry, or discrimination.
MDA was meant to be an organization to help people that were disabled no matter who you are or how old you are. Sadly, those days are gone and until they are back again, I will continue voicing my distaste in hopes that the voices of those with Muscular Dystrophy will be heard.
Written with the help and guidance of Dominick Evans.