There are some traditions in life that are as American as apple pie. One of those traditions is the annual Jerry Lewis Labor Day Telethon. The telethon is held to raise money for the Muscular Dystrophy Association and is typically shown for 24 hours live, though sometimes they air pre-recorded stories in the wee hours while everyone is sleeping, instead of live footage. As the name of the telethon implies, it is hosted by comedian and actor Jerry Lewis.
Lewis spends the entire telethon requesting donations to find a cure for the 40+ neuromuscular diseases that fall under the term Muscular Dystrophy. Unfortunately, unlike apple pie it may fail to leave a warm, sweet taste in your mouth. Instead, for some it turns out sad, bitter, and bigoted, which is not good for anyone involved.
For the past 16 years a growing number of disabled people have been picketing the MDA telethon and the inclusion of Jerry Lewis in the organization that is meant to help people with disabilities. These people, many of them who prefer to be called Jerry’s Orphans, are a group that feels the telethon promotes a message of pity and weakness among the disabled.
Everyone can agree that pity is the absolute last thing anyone needs. It does not matter whether they are in a wheelchair or not. These individuals also feel that MDA has lost its true meaning, which was supposed to be to help the disabled…all the disabled with Muscular Dystrophy, not just a select few.
These days, looking on the website, the telethon, and other forms of media you primarily see the children in their wheelchairs and leg braces. Where are the adults who once were on the telethons? We cannot assume all of them are deceased now can we, because I know for a fact that this is not true.
The Jerry’s Orphans organization, which has taken to picketing any venue with Jerry Lewis present, has caused a hailstorm of criticism. Accusations have been tossed back and forth from the disabled to the non-disabled. So, who is right, the private, corporate machine that has the ability to say one thing and do another or the people that live this life every day and have a chance to understand first hand what they need and what they are missing?
In order to really decide who, if anyone is right in this debate it is important to examine all sides. We will start with the MDA and move from there.
The Pros of MDA
According to the MDA website, there are many good reasons to support and donate to their cause. The reasons to support and donate are broken up into three, well-marketed categories: Help, Hope, and Knowledge.
If I did not know anyone with Muscular Dystrophy and had stumbled across their site on my own, I would want to donate simply because of the message that is portrayed on these pages. However, let’s examine each section a little more in depth before making any assessments on what MDA is hoping to accomplish with their website.
Help comes in the form of clinic visits, equipment, support groups, Internet chats, and summer camps. Hope is classified by research, clinical trials, and research news. Knowledge is all about information concerning diseases, offering publications and videos to enlighten people, and showing “MDA” art, which is art made by people with a form of Muscular Dystrophy.
Part of the struggle here is going to be reading between the lines. Remember, not everything you read is going to be as clear-cut as the way in which it was written. So, let’s break it down.
MDA Offers Equipment
According to their website if you, a person with MD, and have a prescription and a medical need, MDA will offer financial assistance regardless of age, race, etc. This includes wheelchairs. However, there is a tricky part to this. The maximum assistance toward the purchase of a wheelchair, leg braces or a communication device is established by MDA annually.
Generally, this means that people are offered a few hundred dollars a year for repairs, which is hopefully not the year a person’s wheelchair decides to fall apart completely, since wheelchair parts are quite costly. Every 5 years or more MDA will help with some form of wheelchair purchase. Some have been told MDA will pay it all while others are told the maximum allotted amount is $5,000. This could be based on the yearly allowance though so I am certain this number fluctuates.
For the average teenager or adult with MD in a wheelchair this may include an electric wheelchair with tilt to alleviate pressure and prevent sores, elevating leg rests to increase circulation, a headrest, a special grip for their controller, and so on. My boyfriend, Dominick’s last wheelchair (purchased in 2002) cost $20,000.
"A sinister cabal of superior writers."
Article comments
— go to most recent comments1 - RedTard
Dude, at $20K a pop I need to get into the wheelchair business!!!
2 - Dominick Evans
They are actually more expensive now. That was five years ago. Now they estimate the chair I'd need is around $25,000. That's an invacare Action Arrow with True Track, tilt n space, gel seat, elevating leg rests, a head rest, joystick, tray, and you know....the usual parts like batteries, thicker armrests, a seatbelt, etc.
When you sit in a chair and can't adjust yourself you have to be in something comfortable or...as happened to me with my last chair...you end up messed up physically and spend more time in bed than out of it.
You also have to be very careful because you can wind up with torn skin, pressure sores, chaffing, etc. It's a constant problem so they have to be high tech machines.
3 - Clavos
Even a relatively simple "push" chair like my wife's costs $4K. The air cushion for her to sit on was $400.
My wife has a spinal cord injury, so we don't have any dealings with MDA.
Life with severe disabilities is difficult enough. It's disturbing and sad to hear what's going on at MDA.
Clavos
4 - RedTard
It could be the limited demand, but that seems like alot of money. I know medical devices have a bit more rigorous standards but for comparison's sake you can get the world's most powerful motorcyle jam packed with fancy electronics, ergonomic and safety features, and awesome style and power that'll take you well north of 200 mph very quickly for around half that.
5 - Howard Dratch
Why do medical necessities cost so much -- obviously far more than a comparable appliance that is not doctor-prescribed and insurance-paid? Could it be the helplessness of those who need them and the distractions of their "caregivers" who have much on their hands?
After the attack on my wife in Mexico that left her crippled we journeyed back to the States to see the traumatologist and get a prosthetic. A prosthetic leg from the supposedly best shop in Miami (Adam Finieston Clinic) cost nearly $15,000. They refused to follow the surgeon's instructions and it is useless. She waits for another expensive and debilitating journey to Miami to replace it.
In short, being made helpless does not put an end to shoddy workmanship, institutional dishonesty, nor fair pricing. If, as Ashtyn describes, the MDA and icon Jerry Lewis are failing in compassion and effectiveness; then what?
As Clavos said, "Life with disabilities is difficult enough." It is and the level with which we make life easier for the sick and disabled is the level of our compassion and competence as a society.
6 - Clavos
RedTard,
It IS a lot of money.
I think prices of medical devices are inflated because the cosumer is rarely who pays for them--it's usually Medicare or the individual's medical insurance (or both) paying.
There's a company advertising on TV in this market that's selling an electric wheelchair that says call them--they'll make sure you'll pay little or no money for their product. They phrase it more circumspectly, of course, but that's essentially what they say.
7 - Dominick Evans
It's a lot of money and its all because of supply and demand.
People in wheelchairs -need- the equipment. Essentially, they are guaranteed a sale so why not charge an exorbient amount of money and make a hefty salary for it?
If the person cannot afford it then some other source will eventually pay and when they do they will pay a boat load.
My hoyer lift was some $5000. Bedside Commode was $500, wheeling shower chair, $1000. Wheelchair $20,000...the list goes on and on.
Of course, most of those are "standard". I got the "hydraulic" hoyer you pump by hand not the much easier to work but more expensive electric. Insurance doesn't like paying for extras but if you can afford it you pay through the nose for them.
Dominick
8 - Ruvy in Jerusalem
It really hurt to read this article. Jerry Lewis's Telethon was always set not too far from Yom Kippur to get the biggest bang out of the guilt that many Jews feel around this time of year. When watching his appeal as a small child and young teen on WNEW-TV Channel 5 in New York, I could sense this.
But that is not why this hurt to read. I do not know what Jerry Lewis's motives were when he started doing this over 50 years ago, but something has gone very wrong somewhere if the article I read is true, and I have no reason to assume it isn't.
9 - electra
I am personally very upset about this issue as i know Dominick and Ashtyn personally and have been friends with both for years i have no doubt that this is true as i have seen videos of Dominick on the show when he was younger i suppose what hurts the most is i used to donate money to this every year when i was a teen i would save a lil bit from each pay check from my job to send every year but i shall not be sending anymore i have helped take care of Dominick and i know what He goes thru everyday to live i shall be passing this blog along to many of the people i talk with knowing that they donate money to the MDA thanks Ashtyn for the info
10 - Dominick Evans
This is a really good movie clip and I hope that you watch this. I was just like him... serving MDA... and I feel the same way.
Real People... Real Feelings... Real Emotions. thekidsareallright.org
11 - diana hartman
I am pleased to tell you this article and parts two and three are being featured in the Culture Focus today, September 4th.
Diana Hartman
Culture Editor
12 - Lety William
I totally agree with this article. And actually, the maximum allotted amount for wheelchairs was quoted to us as being only $2,000. But we never got anything, of course. I don't raise money for MDA and never will.
Also, I'll never take my child to their clinics. Thank you for the warning! I suspected it, and that's why I didn't take my child there. But now I know they won't take care of my child as an individual.
Thank you for writing this article!
13 - Al Barger
I see no argument here against the MDA. Maybe there are big problems that I'm not seeing from this story, but there's no complaint against Jerry Lewis here. You're taking resentment against the hardships and indignity of disease, and blaming the guys that are trying to help.
I was expecting you to come up with some malfeasance - telethon money being spent on ripple and hookers or something. But there's nothing like that here.
Your complaint seems to be that they're not spending enough money on your boyfriend, who's not as "profitable" as children. Use of that word is a particularly low blow.
Perhaps they don't have enough money to buy $25k wheelchairs for any and all. Is that reason to spite them for doing what they can?
You speak as if it was scandalous that their doctors let insurance pick up as much of the tab as possible. Why would that be bad? It would be irresponsible for them to waste their limited resources paying for something that insurance could be picking up.
14 - ozarkian
A large part of the high wheelchair cost is likely due to product liability insurance. If a disabled person were able to contract product liability away, the price might be alot less and there might be alot more manufacturers producing them.
Regarding MDA, first, after 56 or so years of existence, you can bet the regular progression of bureaucracy has taken a toll. Second, and more fundamental, in 1950 the MDA formed.
In 1953, a scientist discovered MDA was truly a dystrophy disease. Look dystrophy up in the dictionary. Most of MDA is probably a biochemical genetic defect resulting from nutriotional deficiencies in the mother or a grandmother, when her eggs were forming before her birth. The defect affects nutritional ability in a debilitating way, which then leads to gross deficiencies, and then disease.
Why has MDA not done a massive amount of research in this area? There are Internet stories of individuals curing their children via supplementation with vitamins and minerals critical to muscle formation and maintenance.
Why do so many people leave their lives strictly up to their doctor, hearing only what their doctor says, and do what their doctor says, instead of think and research for themselves? It reminds me of a woman who called in on a radio show one time, crying about how she had to get a hysterectomy because the doctor said she did, and she called to ask, "Do I really have to?"
15 - john
A large part of the high wheelchair cost is likely due to product liability insurance. If a disabled person were able to contract product liability away, the price might be alot less and there might be alot more manufacturers producing them.
Regarding MDA, first, after 56 or so years of existence, you can bet the regular progression of bureaucracy has taken a toll. Second, and more fundamental, in 1950 the MDA formed.
In 1953, a scientist discovered MDA was truly a dystrophy disease. Look dystrophy up in the dictionary. Most of MDA is probably a biochemical genetic defect resulting from nutriotional deficiencies in the mother or a grandmother, when her eggs were forming before her birth. The defect affects nutritional ability in a debilitating way, which then leads to gross deficiencies, and then disease.
Why has MDA not done a massive amount of research in this area? There are Internet stories of individuals curing their children via supplementation with vitamins and minerals critical to muscle formation and maintenance.
Why do so many people leave their lives strictly up to their doctor, hearing only what their doctor says, and do what their doctor says, instead of think and research for themselves? It reminds me of a woman who called in on a radio show one time, crying about how she had to get a hysterectomy because the doctor said she did, and she called to ask, "Do I really have to?"
16 - Denise Woodell
I absolutely agree with Al Barger. Jerry Lewis is
a wonderful man who has done a great job for us all these years. If it wasn't for Jerry and MDA, myself and other Jerry's Kids wouldn't have nothing.
17 - Dominick Evans
A lot of Jerry's Kids (Orphans) do have nothing. However, if you want to be pitied Denise that is your choice.
Most of us, don't want to be pitied, called crippled, called waterbeds, or be treated like we are stupid.
Like it or not, Jerry has said some very callous things towards the disabled, but if you can overlook that because he didn't say it to you then that is fine. I'm thinking of everyone else with MD and not just myself and they deserve better then Jerry.
Dominick
18 - Monterey
When I approached the MDA after first finding out about my son's Muscular Dystrophy. This was in 1993. I was sent a 3 year old pamphlet on the characteristics of some M.D.'s. I actually found the U.K. to be much more progressed in the matters of ...respite care, medical research, and availability of clinics. Childrens medical equipment is much easier to secure, although it took 6 months to get a wheelchair. Six months to a terminally ill child is a long time. I have since felt that Jerry Lewis and MDA exploit M.D.'s youngest victims, while securing large amounts of cash for Dr.'s. My son never saw 50 cents. The camps are costly. The clinic was just as described earlier. No warmth like the telethon portrays. No support groups as if you could really get to one when you are caring for a disabled child. With tools like the internet..it just seems that the MDA could do so much more for individuals than lining a few pockets.
19 - MDA Guy
I was wondering where all this misinformation is being gathered from? I read alot of people's comments talking about how the mda doesn't help people, but I would like to see some proof of this fraudulent accounting. I have sent kids to the summer camp and know they dont pay a dime for this. The kids that go have a wonderful time and truley are greatful for this one week. I have spoken to countless families with MD and they are very appreicative of the help being recieved by the MDA.
20 - MDA Guy
All I am saying is if you are going to try and slam a good organization, you best have solid evidence to back up your claims. Also, one guy's opinion who feels he was disowned by the MDA a long time ago does not count as reputable research.