At an appearance in Chicago Wednesday night, Jerry Lewis flew into a rage when heckled off the stage by disability activists in wheelchairs, telling
security to eject one overweight protester by commanding "move that living waterbed out of here."
The hecklers were from Jerry's Orphans, a group begun in the early '90s by Mike Ervin, a former Muscular Dystrophy Association poster child. They're angry about their portrayal in the Labor Day Telethon, as described in a documentary The Kids Are All Right:
Millions of viewers tune in every year and come away with the idea that people with disabilities need pity and charity rather than accessible public transportation and housing, employment opportunities and other civil rights that a democratic society should ensure for all its citizens.
In yearly telethons since 1966, Lewis has helped raise an estimated $2 billion in donations for "Jerry's Kids," a staggering figure that one might expect to shield him from criticism. But Ingrid Tischer, a woman with muscular dystrophy, describes how Lewis depicts people like her as wretched, helpless and hopeless, a portrayal that pulls in the money at the expense of their self-worth:
Minutes after I tuned in this year, a little girl was profiled in a video montage before she and her parents joined the host on stage. She sat listening quietly as her parents talked about how their little girl didn't have a future.
Unlike "normal" children, she was "confined" to a wheelchair and could be "struck down" at any moment. You couldn't see how these dramatic statements affected her because a "Call Now" graphic covered the lower portion of the screen -- right where her face was, and where the face of of any person who uses a wheelchair would be expected to be.
Here's the thing: Little girls who hear they don't have futures become women who don't have jobs. And people will never care that women with disabilities are excluded from their work places if they think of us as faceless bodies with special needs instead of women with equal rights.
In 1990, Lewis imagined himself having muscular dystrophy in a cover story he wrote for Parade Magazine:
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.
I may be a full human being in my heart and soul, yet I am still half a person, and I know I'll do well if I keep my priorities in order.
As an indicator of how volcanic the 79-year-old comedian became in Chicago, Lewis accused protesters of faking their condition, according to one person in attendance:
When he spotted these activists in the audience that were in the front row in their wheelchairs, he even went so far as to say 'These people are going to walk out of those chairs and drive home tonight. I bought those chairs for them.'
Update: Will Pfeifer has posted audio of the incident. Another attendee disagrees the characterization that he "flew into a rage."
-- Rogers Cadenhead
Wow, I am really not sure if I should take this as presented or look more into the specific context. If things are as they seem, then my opinion of Mr. Lewis has dropped dramatically. I am not sure how something like "move that living waterbed out of here." can be taken out of context. I am not familiar with any context when that is acceptable. Matresses were alive in Douglas Adams book The Restaurant at the end of the Universe, but none were waterbeds.
I have never had much faith in hollywood, it seems like everything and everyone is faking whatever it is they are doing. I guess this is just more proof pointing towards that assumption.
Sorry for the double post, but I just realized that the mattresses were in Life, the Universe and Everything.
I've always thought Jerry's approach to the subject was a little off. This would seem to bear it out, especially in the words he chose to use in his imagining himself with muscular dystrophy. They veer close to passive aggression-- in spirit, if not in deed.
I don't think it's too outre to imagine a volcanic pool of rage churning just beneath Jerry's surface demeanor.
It seems that the older he gets, the more likely it is to erupt.
I know the French think Jerry Lewis is a great artist, as a comedian. I wonder how antics like these are received by the critics there?
jerry lewis is not a sensitive guy. he's ego driven and always has been. and that in part has driven his comedic art.
take the bad with the good and don't forget what the money has meant for so many people.
Why is it, that whenever the name, 'Jerry Lewis', comes up, somebody always has to drag the French into it? Why?
Because we are conditioned to hate the French. No one is supposed to be that happy about life and work so little.
(I know I know....off thread)
By the looks of his bloated countenance, Jerry could do a good impression of a "living waterbed". My apologies in advance to any sub-group of the human species who could possibly be offended by this.
I think I side with Mr. Lewis on this. In all walks today you can see that extreme PC has reared its ugly head. Unless you're a Caucasian male in good health, there is always someone out there with a chip on their shoulder listening to everything you say and waiting to pounce.
And let's face it, you don't go down the street and give your money to everyone who lives in a house or apartment. No, their story has to touch you. And in an indirect way, you give your time and money because you feel that you are doing better than them and you can help.
Well, according to the quotes listed in the blog, the "spokespeople" of the people who hate Jerry don't want us to feel that we're doing better because that is demeaning to them. How would they feel if the telethon was just one person saying "Give, give, give" for 22 hours. They might raise about $34, not the billions that have been raised through the celebrity telethons and the telling of stories of people with this disability.
Name me one fund raiser, whether it be Hurricane relief, faith based charities, or medical based institutions, that does not describe why the money is needed and insert the human element? I've always been told that if you see a problem, you'd better have a solution before you complain. Ms Tischner, what is your alternate solution to raising money for MDA? And why haven't you been able to get 2 billion plus for the MDA fund.
I was at the event and recorded it. Listen to the audio and judge for yourself. Mr. Lewis did not fly into a rage, and his angry remarks were in frustration of being ambushed and getting no assistance from security or the police to restore order.
Accusing protesters of faking their condition was the most egregious of Jerry's faux-pas. I'm sure there is a more suitable, more intensive word in French for his actions, but I don't know it.
At any rate, if memory serves, it seems that Jerry has always had a proclivity for 'exploiting' the plight of those with muscular dystrophy. And he's always done it in a rather unseemly way, but the public didn't necessarily perceive it as such, until society developed a social conscience about respecting the rights and dignity of the "differently abled".
What are you talking about, Joe? Caucasian males are the prime victims of those just "waiting to pounce". Are you sure you phrased that the way you intended?
I think Madison Avenue has demonstrated that anything can be sold, and the story doesn't have to really "touch you", either. Remember the 'Burger King' creep?
I'll bet Bill Clinton could raise more money for muscular dystrophy than Jerry Lewis, anyday, if that was his particular cause.
I saw Jerry Lewis in Cannes, and he acted like an idiot there, too. By the way, 'idiot' is French.
THis is typical of what this society has come to. O.K. you have this disability. You don't want peoples pity. What are you doing at a public function distrupting a person at work?
Your argument or reason valid or not, your choice of protest is outdated and inaffective.
Mr. Lewis is a regular person, Mr. Lewis is also an American icon. His ego is what it is. He wouldn't be who he has been in the past if it wasn't. The telethons seem or at least in the past seemed to have pulled people together for what I would deem a good cause. It is a positive action. The sad stories that are inacted for the sake of the telethon aren't exactly misrepresentitive of parents or the afflicteds pain or anguish. In order for 2blillion dollars to go to a wothwhile fund, you must strike a chord in the hearts of those who would just ignore it otherwise. If there are better alternatives take your ideas to your group, put together the type of team you need and execute it.
If you want to be treated like everyone else, stop protesting and implement your way of increasing public awareness, in the manner you wish. Why not try to have your own time during the telethon? Lobby for your momement to express your concerns in a constructive manner helpful to all involved instaed of such an abrasive, non effective manner.
I believe in public protest as a valid form of political expression, I just think that the limits of your free speech rights extend as far making your voice heard, but not so far as to drown out my free speech.
Why should people with muscular dystrophy be represented as 'victims', no matter how noble the charitable effort to raise money on their behalf?
To use one of those dreaded 'PC' words, might it not be more effective to represent them as autonomous persons, who can be 'empowered' controllers of their own destinies, rather than as the hapless victims of a malignant fate?
I believe it's possible to depict the reality of life for someone with muscular dystrophy, with all its attendant difficulties, without using the dramatic device of Pathos to do it.
Personally, I would be more likely to open my wallet to help a cause for people I see as independent active doers, than for those I see as helpless beneficiaries of charity.
Unlike Mr. Lewis, I also believe that it's possible for a "cripple" (not my word) to be a normal, healthy, vital, and energetic person.
When I originally read about this, I thought the protesters were being too hard on Lewis, whose intentions in raising so much money for the MDA seemed unimpeachable.
But when you read that horrendous Parade Magazine article calling people with muscular dystrophy "half a person" and see the many times he's called them "cripples," his conception of these kids does more harm than good. It should be possible to raise money for muscular dystrophy without hammering the message that they are hopeless half-people.
How could Lewis have faced protests like this for 20 years and still have no better answer for them than "move that living waterbed out of here"? Is it really possible that he's been involved in this issue for so many years and knows nothing about efforts to give differently abled people a sense of empowerment?
Lewis's disconnect from present social realities is strange. His Parade article reads like a primer for how to humiliate and dehumanize a child with muscular dystrophy.
Imagine how dispirited such a child would feel after reading it. The rigorous manner in which Lewis ticks off the multitude of indignities to be visited upon him seems downright sadistic, if I may use so strong a word.
If the kid wasn't depressed or feeling hopeless before he read the article, he certainly would be afterward.
Lewis actually describes people who have muscular dystrophy as "afflicted", and people who don't as "fortunate". Of course, this tells the kid that he is "unfortunate". And to use the word "cripples"!
I thought our society outgrew these antiquated attitudes decades ago. Lewis seems to be in a time warp where patronizing the differently abled was acceptable. He could hardly be more obnoxious to a modern understanding of human decency if he tried, money-raiser or not.
If you haven't seen it, look at Lewis' contract rider posted on thesmokinggun.com.
Lewis attitude toward the disabled is extremely outdated and wrong.How he can be involved in the cause for years and still use the term "cripples" and "half a person" is beyond me. This man is a total jerk.
There is a wonderful Irish-made movie called "Rory O'Shea Was Here". It's about young lives lived in wheelchairs, rebellion against a well-meaning but benighted status quo, and how one young man's declaration of independence leads his friend to discover his own integrity.
The film is humane without being maudlin, but be forewarned: it is unabashedly sentimental (it is Irish, after all).
One hopes that Jerry Lewis might 'benefit' if he saw it.
I think it's great that so many posters have a more high-minded and fair attitude than Mr. Lewis. That, and $1.00, might get you a cup of coffee. But it sure as hell won't pay for some kid's treatment.
You can criticize his word choice, but after 40 years and the estimated $2 billion raised, it's really hard to convince me his heart is in the wrong place.
telethons is a good think...
Every year, for the past 16 years, I have always watched the MDA telethon...and each year I pray for Jerry Lewis to meet his goal. --You see, I was born with Cerebral Palsy in 1985 and have overcome many obstacles in my life. It is people like Jerry Lewis that don't give up on helping people in need. The MDA and Shriner's organizations helped my parents in getting me the adequate therapy to learn how to talk, walk, and now even drive a standard! I was even one of "Jerry's Poster Kids" in 1998 in my home town...There have been numerous occasions where Jerry Lewis has said something degrading, provocative, racial, etc., but that's just because as he gets older his mind/mouth spits out dry and hurtful humor... I all I ask is for everyone to please remember Jerry Lewis as a Man who helped and loved those in need and not as "Jerk" who hurt someone's feelings.
Politically correct or not, the man has raised a lot of money for MD, few people could have accomplished as much.
And give the guy a break when it comes to using terms like "cripple" and "half a person." He's got pulmonary fibrosis, which is incurable. My father died from it. Jerry's got some really tough days inevitably in front of him.
jery lewis perpetuates an image of people that is wrong. But the amazing thing is, is that most of us have blinders on and we believe what we see on television. Can you really say to yourself that jerry knows what it is like to have a disability? Can you really say to your self that jerry, (who is one person with a narrow view of how diverse life actually is)knows how best to deal with difference? Of course not.
The reason he doesn't use adults is because they would tell him to go shove his message (because they know what incideous stigma is)
$2,000,000,000 and 40 years of research. Yet no cure. Hmmmmmm!
I'm a Jerry's Orphan. I was a former poster child.
Jerry profits as a child pimp, and unfortunately as a child when you are being lavished with attention you're willing to work with the organization.
They convince you that you want to fight for the cure and that is your mission and then when you're older and they have no use for you you become nothing to them.
I was dxd with muscular dystrophy 16 years ago at age 38. I was a Major in the Marine Corps with 15 years of active service; my career ended abruptly after that with a medical retirement.
Initially, I bought into MDA's program, but after about a year, I recognized the sham that it is. Only about 17 cents of every dollar MDA collects is actually spent on research. For every dollar spent on medical devices for patients, MDA has over $3.00 in overhead costs. Most of the money collected by the organization is eaten up by administrative and program overhead costs.
Anyone who questions MDA is snubbed; dissent is not tolerated at all. If you want anything from them, you need to become their "Stepford Patient."
Thankfully, I am a disabled veteran, and everything I have needed, I have gotten from the VA. I have not had to bow to the MDA for the things they have to offer.
Don't think for a second that Muscular Dystrophy is just a children's disease. Two-thirds of MDA's patients are adults. MDA simply exploits children in its fundraising for the effect of getting a bigger return.
It is my opinion that the MDA is the biggest impediment to finding cures and treatments for MD, not the solution. We are MDA's meal-ticket; if it finds a way to cure us, then there is less of a reason for it to collect $170 million each year to support itself.
I don't know Jerry Lewis personally and I would venture to say that many of you who have posted negative comments don't either. So my question to you is, who do you think you are to make critical comments when you have never walked in his shoes? I'm certain that much of what has been reported by those who have this disease is true. Not every person is helped by these mega corporations. Still, the reality is money is being raised, research is being done, some of the muscular distrophy has been cured, with the help of MDA and the telethon. What are you doing to help fight this disease, those who feel it necessary to slam MDA and Jerry Lewis. Again, the fact is Jerry Lewis has used his influence and stature in Hollywood to gather some colleagues who spend countless hours entertaining all of us, and put it to good use to help those who need some help. Whether you agree with him or not, it's more than 99.9% of people do on any given day. He has put his life out there for people like you who have taken the opportunity here to vent your personal opinions of a man you don't know, what about the the corporations he brings in? Albertsons, 7-11, IAFF, and so many others -- no one criticizes them. When you've walked in the man's shoes, then you have a right to complain and criticize, until then - don't.
Above is a comment from yet another person who has bought into the propaganda of the MDA. As I stated before, dissent and criticism is not tolerated against the MDA. Anyone who is critical is considered hateful, and if they are a patient, an ingrate.
What is seen during the annual telethon is MDA as it wants America to see it. It is pure propaganda, completely embellished and targeted toward the uninformed. The next day, MDA goes back to being itself for another 364 days, mission accomplished.
In September of 1993, Vanity Fair Magazine published an article titled: "Jerry vs. the Kids," written by Journalist Leslie Bennetts. I didn't read the article until 4 years later, and it reinforced notions I had developed on my own.
As a person who has muscular dystrophy, MDA hasn't done anything for me that I could not do myself. Most of MDA's contact with me over the years has either been to ask me to help the organization raise money, or to ask me for money myself. So brazen is MDA in its fundraising that it even once sent a representative to my house to try to persuade me to remember MDA in my will. The Kids are always fair game for solicitation. I suppose we are expected to pay our fair share if we have any means. MDA has never asked me how I am fairing with my disease or if I have any needs. Therefore I am so thankful to have veteran's resources, which have supplied my person requirements.
Research? You have to be joking! It is not MDA's priority. From 1998 through 2005, MDA's budget grew from roughly $120 million per year to over $175 million. In 1998, MDA gave a paltry $0.19 per dollar collected to its researchers, which was reduced to an even paltrier $0.17 per dollar collected by 2004. Where did the extra $50+ million per year go? To corporate and program overhead expenses. It would be safe to assume that research costs have also increased during this period. Since MDA now gives less to its researchers, less research is being funded. Between 1998 and 2004, less than $10 million more was given to researchers than was used in MDA's fundraising program. MDA tickles your ears on telethon day concerning all of the research it is doing, and this is just pure propaganda, nothing more. I also estimate that MDA has to collect $30 million on telethon day before the tote-board turns green. A needless waste of money that could be used to fund more research.
Those who protest or resist the MDA are labled as "hate mongers," "ingrates," or we are "biting the hand that feeds us." My hat goes off to the resistance, some of which I have done myself, to include turning off the coporate donation to MDA from my employer 11 years ago.
As someone who has been a "disability advocate" for almost my entire life, and who finally woke up to reality, I now realize that it is fundamentally unfair to force able-bodied people to subsidize the "disabled" by payment of taxes. It is not the able-bodied person's fault that someone else is disabled, and it is therefore a complete non-sequitur to FORCE them to subsidize disability.
Whenever the government subsidizes something, you get more of it. Years ago, when "disability" wasn't subsidized by the government, and the "disabled" had to rely on private charity, you had a lot fewer people claiming disability. Of course, that was back before it became a badge of honor to have a disabled placard on your windshield; when people didn't go around bragging about how they are disabled and proud of it; and when you didn't have so many malingerers faking their disability simply because they don't want to work. Under the present system, we have created incentives for people to observe poor health habits such as being overweight, not exercising and smoking. Then they can claim SSD and SSI, not to mention MediCare and state medical coverage.
Meanwhile, we punish people who take good care of their health by making them pay Social Security taxes through the nose, so they can't support their families properly, and so they receive lower Social Security retirement benefits than they would if the government did not encourage people to claim they are disabled. And this is not to mention how the "disabled" become such ingrates, in that they don't appreciate what they receive and actually think they deserve MORE! And no matter how much they receive, they are never satisfied! This simply cannot be allowed to continue, or the number of able-bodied working people paying into the Social Security system will decline even worse than it already has.
The question then arises, what would disabled people do if the government didn't subsidize them? They would die, hopefully. I'm serious. Any other approach is to deny reality. Any system that requires able-bodied people to support disabled people is not reality-based.
Of course, the argument is made that "the measure of a society's greatness is how they treat the disabled and the infirm." This is utter politically-correct, ego-massaging nonsense. Eskimos let their elderly, disabled and infirm float off on an iceberg, never to be seen again. I am sure they didn't like doing so, but they understood that they had no other choice, because otherwise the able-bodied members of the community would not be able to prosper. Does this mean that the Eskimos were a less loving, inferior society? Of course not. They probably venerated their elderly and infirm more than we do. It's just that they realized that keeping them around when they became a drag on society helped neither them nor the people who would have to support them.
I used to contribute to Jerry's telethon, but not anymore! They not only don't contribute to help fund research, but they pay off their employees hefty sums! I'll bet Jerry takes a cut of the money himself!
I work for MDA and my sister has MD. MDA spends 77cents of every dollar raised for research and medial services for our patients. MDA is a wonderful chairty. The staff works so hard to raise money for a cure. Check out our website, www.mda.org, for the truth. I do not make much money personaly. The money goes to research not MDA staff pockets!
Oh my goodness. Some of the nonsense some people seem to believe in. Any way, I'm not going to comment on fundraising and so on, except to say that charity driven money making encourages the idea that having a disability is something to be pitied and that people who have a disability are incapable of contributing as valued members of society.
When a person like Jerry Lewis can call people cripples and portray them as half people, I would have to say that his motives are suspect, to say the least. Rather than money to find a "cure," it would be more productive to learn just what people with disabilities are capable of and who they are as humans, and support them to be all that they can be. Every human has a right to a life of dignity, and if it is acceptable to demean and put down people with disabilities just because you raise so much money, then something is wrong. As for the comments about what the Eskimos (a racist term, by the way) did with their people with disabilities--I can't believe any thinking person would write such a thing for everyone to read. I work with people with disabilities and I live with one myself, and trust me, most of us don't see ourselves as needing to be "fixed." What we need is acceptance, inclusion, and a chance to do our best with what we have.
I almost hope that Jerry Lewis does have a condition that forces him to find out what it is to live with a disability. Hopefully he won't encounter people with the same attitude that he has, especially if he needs any sort of help or support. Personally, I think he should be ashamed of himself.
Jennifer (comment 3/30/2007) doesn't have a clue and obviously has not studied her employer's Statement of Functional Expenses like I have. In its 2005-2006 budget year, MDA collected $187.3 million. Funding for awards, grants and fellowships to researchers was $31.6 million, or $0.17 for each dollar collected. MDA spent another $18.6 million on medical and equipment needs for its patients; under this part of its program it also had $3.62 in overhead costs for every dollar spent on patient needs.
Jennifer may claim that $0.77 of every dollar goes to medical research and patient needs; she just conveniently leaves out the fact that about %60 of that amount is consumed by institutional overhead costs, and only a small fraction is focused on the actual need.
MDA also spent $29.7 million for fundraising in 2005-2006; just $1.9 million less than it gave to its researchers. To top this, it spent $32.8 million putting on its last telethon!
It is pretty sad that Jerry Lewis can raise millions of dollars for
his MDA "Jerry's Kids" while his own REAL daughter is disabled and
homeless. She may be illigitimate, but she has feelings too. He knows that she exists, but refuses to help her. I think that it's time for Jerry to step up!
WELL THAT FAT GUY WAS IN A WHEEL CHAIR MOCKING THE MDA KIDS SO I SAY HE GOT WHAT HE DESERVED...U GO JERRY...I LOVE U JERRY KEEP UP THE GOOD WORK...OH AND BY THE WAY I AM A FAT LADY AND I DO NOT MAKE FUN OF OTHERS SO WATEBED MAN GO DEFLATE
does Jerry Lewis take a cut from the money raised during the MDA event??? I have heard this but would like to have some clearity on it. If any one knows.
Any idea where I might get copies of the Muscular Dystrophy
Poster Kids? Mainly interested in the "60's".
Goooooooo Jerry!! The guy was being rude. So he had it coming!!
How much does Jerry Lewis make from his telethons? I heard for every $1 million raised, he gets $900,000! And when he was confronted with this outrage, he said, "If it weren't for me, they wouldn't have the $100,000!"
I think I found the answer to my own question on Yahoo, and it apparently lays to rest another nasty rumor.
Here's the information I found--apparently Jerry Lewis earns nothing from his telethons, but I'm not sure if this goes back to when the telethons first started.
HOW MUCH DOES JERRY LEWIS MAKE FROM HIS TELETHONS?
Best Answer - Chosen by Voters
Jerry Lewis raised nearly $64 million on Monday during his annual Labor Day Telethon to benefit the Muscular Dystrophy Association, topping last year's event by $3 million.
He receives no part of the money raised, nor do any of the performers on the show. All the monies go toward research and those patients fighting this disease.
I find Lewis, as a performer, insufferable.
That said, what a bunch of typical PC ingrates these protestors are!
Honestly, I'm kinda tired of how the disabled whine about how horrible it is to be treated with sympathy. Take a look back at how many cultures have traditionally treated the disabled and different. Didn't Sparta kill them? Sypmathy for the disabled is a kind and evolved response. And actually Lewis's "imagining" seems pretty empathetic. I often think how difficult it would be to be disabled and how much I would miss. It's called compassion. I'm sick of these PC ingrates who just can't be pleased and take a perverse delight in being offended, and then promptly wonder why they end up isolated in their own ghettoes.
Keep in mind that I'm someone who can't stomach Jerry Lewis's "comedy" either. (esp, the creepy blue comedy he does for family telethons.) Although his comment "If you don't want people to feel sorry for you, stay home." is hilarious.
No good deed goes unpunished.
Do you know why we have so many problems in our world? It's because of people like most of you posting on this site. You are all so full of hate and criticism and you obviously all think that you are correct. Get over yourselves, stop pulling "facts" out of you asses and YOU try doing something to help someone other than yourselves.
Jerry Lewis is and asshole, a motherfucker, and a bitch.
It is a Sad Situation That Mr Jerry Lewis Appears To Be Not a "Super Jew" As He Coins Himself,But Rather a Super Jerk! What is Really Sad is That His Oldest Son Gary,Has Always Shown Much Love and Respect for His Father and Has Openly Displayed His Affection For His Dad. But Now,After Recent Events Such As The Denial of His Biological Daughter,Suzan and Showing No Respect Even in the Death of His Son,Joseph,Leads to an inevitable Conclusion That Mr Jerry Lewis is a Scoundrel.Gary Lewis Himself Has Been Forced to See The Reality of His Father,Stating That His Father is a Mean and Evil Man! Who Would Know Better Than a Beloved Son of Whom Was There For His Dad for Many Years!
My Boss is going to be put in jail until she can raise bail. The bail money goes to Gerry's kids with Mucular Dystrophy Assoc.
The bail is $3,000. We were wondering if we could get some posters to explain this fund raiser.
We work at Ace Hardware in Northfield NJ and would like to collect 3 or more thousand between now and the lock up.
Any printed material of suggestion would help.
Joan Sweeney, Locked up person is Roberta Jensen
I Have muscular dystrophy i was diagnosed when i was 33 months old with an undetermined at that time form of childhood onset md i went into a chair at 39 months old and ive spent my entire life in my chair i never walked at all so i dont know what walking is like or what being abled is like i am one of those quadriparesis in 1996 1997 they discovered my gene variant mutation its a frameshift on the gamma 13 q12 gene the lgmd2c gene now i got my diagnosis but that does what nothing? I have FAMILIAL autosomal recessive duchennes like muscular dystrophy AR DMDL TYPE 1 i am lucky as i married my lifes love my wife is much like me we both have muscular dystrophy from early childhood shes also in a chair most of her life we have a full time livein caregiver who washes baths dresses us raises us to bed our chairs toilets etc we cant transfer at all we are 40 somethings now ,Please dont pitty us we have each others love and this is the only life we knew and have we manage as best we can. I dont ask mda for a thing ,as they dont offer much to adults with md they pray on children with md being kids are cute ,
60 years and they haven't even found a cure ,, there is something wrong,, is the money going to operating the place and all the employees and only a percentage to the research,, get onto stem cells an they will get the answer fast,, this has gone on to long ,,,and people are beginning to question this telethon
Furgurl... don't even go there. No matter what people think of Jerry Lewis, the MDA has helped so many people - children, adults - those who ASK for their help - and they've made a huge impact on the lives of others.
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