With all my heart, I’m asking you to do one thing. Don’t watch the Oscars this weekend. If you’re dying to find out the winners, I’m sure they’ll be announced on Twitter or somewhere else online right after each award is given out. This year, the Academy has gone too far. They are giving a Humanitarian Award to one of the LEAST deserving individuals on the planet.

Jerry Lewis is NOT a humanitarian. Have no doubt, he has supported the MDA as their spokesperson for the last 56 years for his own gain. He does get money from the money you donate. MDA pays for all his travel expenses, and it’s unclear what else they pay for, for him. Perhaps he receives chunks of the missing millions that MDA has marked as other funds in their publicly released, yearly funding reports?! It isn’t exactly clear where these funds go, but it wouldn’t be surprising if some went to Lewis.

MDA has also provided a way for Lewis to stay in the spotlight despite a dying acting career. He may have started out caring about the cause but his actions and comments dating back some 20 years show his true feelings towards those with Muscular Dystrophy. Jerry Lewis doesn’t truly care. To him we are just cripples and half-people who are supposed to be pitied. Those are his words…not mine.

I may be a wheelchair user, but my wheelchair does NOT define me. I’m proud of my wheelchair. I’m grateful for it. Do you know why? I am grateful for it because it helps me get around. It gives me independence. I see it as a device to help me be more independent. It works as my legs.

Imagine if someone were to define you by a body part, such as your legs. It wouldn’t be very nice, would it? In fact some people might not even think their legs are a good feature, and therefore would be embarrassed by the definition when they have so many better features and so many more redeemable qualities.

When I list the qualities I have lots of other qualities that define me better than my inability to walk. Some people claim I’m funny. I think I’m honest, caring, devoted, helpful, creative, hardworking, dedicated, inspired and several other things. I don’t think…gosh I’m in a wheelchair. If I list that in a profile it’s because I want people to know I blog about being disabled because I want wheelchair users to stop being defined by our chairs and start being defined by what we have to offer.

Jerry Lewis does not believe those of us who use wheelchairs have anything to offer. At the 1992 telethon he had this to say about those of us with Muscular Dystrophy, particularly those of us who are ADULTS with MD:

My kids cannot go into the workplace. There’s nothing they can do.”

I’m surprised by this because I know many people with MD who have good jobs. I know those with MD who have attended and graduated college. I, myself, attended college. I have at least two friends with MD who have high paying jobs in the computer/IT field. One of them just adopted a baby with his wife and they live in a decent sized house in a good neighborhood. I had another friend who finished a degree in engineering at the same university that I attended. He had Duchenne Muscular Dystrophy and was more book smart than any of the other friends I had, wheelchair users or not.

Even Jerry’s former golden boy, Mikey Neufeldt, has a good job working for Harley Davidson, and he serves on the MDA National Task Force. Back when I was a child, Mikey was the national poster child (before they called them Junior Goodwill Ambassadors) for MDA. He was the national face of MDA and he’s accomplished a lot in his lifetime despite having MD. So, I don’t understand how Jerry can get away with saying these things. Of course, that’s not all he’s said. Once…Jerry wrote his opinion on what it’d be like to have Muscular Dystrophy.

“I decided after 41 years of battling this curse that attacks children of all ages, I would put myself in that chair, that steel imprisonment that long has been deemed the dystrophic child’s plight. 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. 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. 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 half a person.”

I am not a half person. I am a WHOLE person. I am complex. I love. I feel. I hurt. I bleed. I cry. I eat. I sleep. I dream. Just because I don’t walk doesn’t mean I’m not whole. This entire excerpt, which was written I believe in 1992 (or 91? 90?) in Parade magazine is disgusting. Cripples is a word I dislike, especially when nondisabled people use it toward us. It’s the most negative thing you can call a wheelchair user, next to calling them a half person or the R word.

The definition for crippled in the dictionary is “something flawed or imperfect.” That could describe EVERY person on the planet, but to use it to describe someone on the basis of disability is disrespectful. My opinion on my own usage of the term has evolved, but you’d think the spokesperson of a national disability organization would have more tact by avoiding using it. Unfortunately, cripple seems to be one of Jerry’s favorite words, next to “fag”, which he has used to describe homosexuals not only on Australian television, but on the MDA telethon last year, when he called the son of one of his cameramen an “illiterate fag.”

Here is another example of him calling those of us with MD cripples. This time he did it on CBS Morning News:

“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!”

Why should I stay in my house? I don’t want to be pitied nor do I want to be trapped in my house with no place to go and nothing to do. I want to be seen for what I have to offer, not what I’m not capable of doing with my legs and arms. Does anyone want to be seen for their flaws? As someone with feelings and emotions, I surely don’t.

You can check out the following websites to check out and actually here some of Jerry Lewis’ insensitive comments, IN HIS OWN WORDS!




Here is an online petition you should sign protesting the Academy Award’s and the Humanitarian Award Jerry Lewis is receiving:


Of course, there is also his Vanity Fair article, written in 1993, when he was talking about those of us who don’t like his pity-mongering ways. Those of us wheelchair users who protest his actions for MDA and during the telethon, including a group calling themselves Jerry’s Orphans:

“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 a million and a half people who depend on what I do!? “I’ve raised one billion three hundred million dollars. …. They want me to stop now? Fuck them. Do it in caps. FUCK THEM.”??

Jerry didn’t raise anything. That’s not HIS money. What about every person on the telethon, all the volunteers around the world who work their asses off for the MDA every day of the year? These are the people I met and worked with when I raised money for MDA. These are the true heroes of the organization, who don’t get paid a cent for their voluntary efforts.

All Jerry is is the figurehead, who accepts the checks that these volunteers raise throughout the year. That’s the number that’s tallied on his tote board and he doesn’t raise a cent of it. I bet MDA would make more money with George Clooney as their spokesperson and I believe he would have the common sense not to call those of us with MD cripples.

Now, I have a long history with MDA. I once supported the organization fully. I spent years raising thousands of dollars for them. I was the Junior Goodwill Ambassador for Northwest Ohio in 1990 & 1991. I was the State of Ohio Junior Goodwill Ambassador in 1992 and 1993. I spent many hours driving around the state to go to MDA events. I went door to door asking for donations. I raised money through my family, sang on the radio for MDA, sang on the Toledo Telethon, appeared on telethons in Columbus, Toledo and Cleveland (twice I was on all three in the same year – which meant no sleep and continuous driving around the state in two days). I attended thousands of events. Then, I became an adult.

The older you are, the less MDA seems to care. I don’t go to the clinic anymore. I see specialists for things I need like respiratory issues and an orthopedic specialist. If I do need something from MDA they never return my phone calls. None of my specialists are associated with MDA. I get my medication from these doctors or my general practitioner.

I am no longer allowed to attend MDA Camp. Originally, all people with MD could attend. It was great having adults around camp, when I was a kid, because they were people I could confide in, learn from and helped me to realize I had a future. The kids of today with MD don’t have that. First, MDA cut the age down to 21 and younger in the 90s, and now it is 17 and under, starting in 2009. More and more, MDA is making cuts, because adults with MD aren’t as profitable. We can’t invoke as much pity, and as Jerry Lewis says, that is what it is all about.

I’ve had friends with MD, who have raised a lot of money, served as Goodwill Ambassadors, and served MDA in other ways, be told not to come back to the telethon. MDA is taking a new direction and these individuals have been told they are too old to attend the telethon and/or MDA events. Before, anyone with MD was welcome and now, there is an age limit. Services for adults are slowly being cut from the budget and even Jerry Lewis refuses to acknowledge the adults with MD. If he does we are “Jerry Kids” and he means it in the most condescending of ways.

After MDA cut me out, after all my years of service, after I learned the truth about MDA, and after I learned the truth about Jerry Lewis I felt like a fool. I had been played and used by MDA. I was pimped out by the MDA as one of their child pity prostitutes. MDA was paid because people pitied me as a kid, not because of all of my positive traits or all I would eventually accomplish. I was an especially cute kid, too, so I was worth more money. I feel like such a fool now, because of the way MDA used me, and for supporting an organization that allowed Jerry Lewis to continue its antiquated, hate mongering, pity inducing ways.

The money MDA raises isn’t going to all the places it is supposed to go. MDA makes millions of dollars, and at least $372,662 of that goes to the CEO of MDA. In the last five years, that amount has been as high as $399,000. He makes almost as much as the president of the United States, only because Bush raised the payment of the president to $400,000. Not too long ago the president only made $250,000, and the CEO of MDA was already making more than that.

MDA claimed close to $200 million dollars in profits in 2008. It has been reported on various sites that some money is unaccounted for, and between $15-$30 million of that goes to research. There should be much more of those funds going to research, because that’s really all MDA seems to offer anymore, excluding camp, and clinic.

The MDA clinic now bills a person’s insurance, rather than paying for clinic visits like they used to when I was a kid. The fee for this service is exorbitant and is part of why I no longer go to the clinic. I can pay less to one of my specialists, and they won’t bring an entire room full of people in to show them how my tongue wiggles because I have tongue fascillations, treating me like a lab rat in the process.

At least $4 million goes to something called Other Expenses, but on their Tax Exempt forms, MDA doesn’t say what that is for, and over 15% of what they made last year went to Administrative costs, so this is where your money is going. Once upon a time, MDA once bought us wheelchairs, walkers, and other equipment we needed. Now, that’s limited to $5000 every ten or so years. That’s only 1/4 of the cost of my wheelchair. The CEO’s salary alone could buy around 15, high quality, high tech wheelchairs. That would be money well spent.

My argument here isn’t with the MDA though. It’s with the MDA’s spokesperson, who uses pity to get money for services MDA isn’t paying for like they claim. The worse Jerry gets, the worse MDA gets, and those of us with MD are the ones who are affected the most.

I once loved the MDA, but now I have no respect for the organization, and as long as they continue to allow the hateful, bigoted, Jerry Lewis to represent their organization as they continue to cut the services those of us with MD need, I will continue to speak out about this issue. So, please if you’ve read this, don’t support a man who is no humanitarian. Don’t support a man who has only looked out for himself and his own career. Look out for those of us with Muscular Dystrophy by not supporting the Oscars or Jerry Lewis.