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Sep 06 2011

No Jerry, no cure

We’re finally rid of Jerry Lewis and his smarmy, condescending sponsorship of a telethon for muscular dystrophy. I think he meant well, but he had the wrong ideas: this article celebrating his absence makes a significant point. There are many diseases for which there can be no cure short of magically rebuilding entire bodies and brains — that is, no cure short of changing essentially the entirety of who the person is.

All that money was supposed to find what Jerry called “a cure.” Every year he said “We’re closer than ever to a cure.” But every doctor and nurse will tell you the same thing: there is no cure. In the program for the 2011 annual meeting of the Muscular Dystrophy Coordinating Committee, the word “cure” does not appear.

What people with the disability need is help with their symptoms and with mobility. Their quality of life can be improved, their symptoms can be reduced. They also need “accessible public transportation and housing, employment opportunities and other civil rights that a democratic society should ensure for all its citizens.” That’s what Mike Ervin says—he calls himself “a renegade Jerry’s Kid” who was an official telethon poster child in the 1960s.

That’s not a message of hopelessness. To the contrary, it’s saying there are positive improvements that can be made that don’t involve relegating the disabled to the rubbish bin of ‘God’s mistakes’.

(Also on Sb)

53 comments

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  1. 1
    Beatrice, an amateur cynic looking for a happy thought

    1986: Jerry responds to critics. When a female writer for the Montreal Gazette described his performance as “hyperactive, dated slapstick,” Jerry tells the press, “When they get a period, it’s really difficult for them to function as normal human beings.”

    Aw, isn’t he a sweetie?

  2. 2
    LP22

    No possible cure from the field of gene therapy? Granted, in Jerry’s day, that wasn’t even an option, so his claim of “being closer to a cure” had to be indeed nothing but PR, but what about now or in the future?

  3. 3
    raven

    wikipedia Duchenne MD:

    Exon-skipping Antisense oligonucleotides, structural analogs of DNA, are the basis of a potential therapy for patients afflicted with DMD. Two kinds of antisense oligos, Morpholino oligos and 2′-O-methyl phosphorothioate oligos, have been tested in early-phase clinical trials for DMD and have restored some dystrophin expression in muscles of DMD patients with a particular class of DMD-causing mutations. Further clinical trials are proceeding with these compounds.

    Oligo-mediated exon skipping has resulted in clinical improvement in 12 patients in a Phase 1-2a study. On a standard test, the 6-minute walk test, patients whose performance had been declining instead improved, from 385 meters to 420 meters.[13][14] DMD may result from mRNA that contains out-of-frame mutations (e.g. deletions, insertions or splice site mutations), resulting in frameshift or early termination so that in most muscle fibers no functional dystrophin is produced (though some revertant muscle fibers produce some dystrophin). In many cases an antisense oligonucleotide can be used to trigger skipping of an adjacent exon to restore the reading frame and production of partially-functional dystrophin.

    There is actually quite a bit of effort to treat D-MD at the molecular level. One strategy is to correct the mRNA with antisense agents. The data claims efficacy in phase I clinical trials. This is a bit of a long shot IMO. These agents are very expensive to produce, low in efficacy, and almost have to be designed for each patient. But who knows, in the end it is whatever the data says it is and most data hasn’t been produced yet.

    Then there are stem cells and somatic cell gene therapy. Localized gene therapy has been tried but so far it hasn’t done much.

  4. 4
    Glen Davidson

    “God goofed, and it’s up to us to correct His mistakes.”

    Or, we care more than God.

    Not the worst point that was ever made, although I don’t suppose I’d like to be called ‘God’s goof.’ Depends on how it’s said, unsurprisingly.

    Glen Davidson

  5. 5
    Timinane

    I think this is the problem with how we think of medicine in the public realm and the naming of problems as diseases.

    We make it sound like we are curing people who may have a non beneficial mutation thus in old days would die. It’s good they are alive but where does one draw the line with curing genetic problems.

    I suffer with what is called Haemophilia A, basically a gene on my X chromosome does something to regulate how much blood clotting factor VIII is produced as a severe haemophiliac I have pretty much none in my body but there is still talk of a cure for haemophilia.

    I thought about it and realised short of a cyborg body the cure would mean altering my DNA. I’d rather die being me and I can imagine the horrors of such technology.

    No doubt your average beauty therapist will have big boobs virus, lighter skin virus or whatever is in vogue at the time.

    Back to Jerry Lewis, please do a telethon for the geriatric treatments in our community, now you are old help out old people by pushing Matlock down the stairs *boom-tish*

  6. 6
    raven

    “God goofed, and it’s up to us to correct His mistakes.”

    Or god was trying to punish some kid for what his ancestors did wrong 7 generations ago. And ended up afflicting someone who lives on the other side of the world.

    God’s aim is notoriously bad. He just tried to send much need rain to drought stricken Texas. Last I heard, New Orleans was flooded and tornadoes were hitting Georgia. For the Deity that counts as almost on target.

  7. 7
    Beatrice, an amateur cynic looking for a happy thought

    I’ve googled it a bit and read the news about the controversy – it seems that he was supposed to host this year and then retire. Despite people protesting because he was fired, this year 2.6 millions more were raised than the last so obviously something was done right. What do his fans say? They are surprised. It seems that they expected that people won’t call because Lewis got fired. Nice to see they have their priorities straight. (from here)

  8. 8
    Glen Davidson

    Lewis’s muscular dystrophy telethon comes from shortly after the time when a lot of actual cures, and very good preventatives, had recently been found. Or at least I think that it does.

    If you can get rid of polio and pneumonia, why not muscular dystrophy?

    It’s true that now we know much more about genetic diseases, but they continue not to be very tractable to what we’d especially like, a cure.

    Glen Davidson

  9. 9
    Undularbore

    I’ve never enjoyed Jerry, never got “his” sense of humor.

    But as someone with a form of MD (Charcot-Marie-Tooth) research has brought some light to the disease. The fine researchers at Wayne State University and several other Universities around the world are coming closer to a “cure” in the form of gene therapy. Will it be a viable “cure”? No one knows. I have no idea how much research money Wayne State gets from the MDA, but it is being put to good use.

    Every Winter I look forward to complications of having CMT. When it’s below 55 my hands and feet are cold all the time. I lose my dexterity, can’t type when I get to work in the morning, can’t write or sign my name, feet go numb. Basically I turn into the biggest clutz. It’s fun, you know, to have dexterity half the year and not the other half.

    There are many more diseases that fall under the MDA umbrella and there is still no reasonable hope of any type of cure in the near future.

    I will say that the local MDA office here is a joke. I called them to ask about handicap ramps years ago and they said they had no provider, but could provide the materials. I would have to find a person to put it together. :-\ AND, they don’t even operate a clinic here (a capital city).

  10. 10
    Ms. Daisy Cutter, General Manager for the Cleveland Steamers

    Even over at The Nation, there’s so much concern-trolling on Lewis’ behalf, with the phrase “political correctness” flung about quite a bit. I think it will take a while, probably not until after Lewis dies, for his “legacy” to be reconsidered. Thanks for possibly helping that process along, PZ.

  11. 11
    jaranath

    “They also need “accessible public transportation and housing, employment opportunities and other civil rights that a democratic society should ensure for all its citizens.””

    Which is precisely what my governor is contemplating slashing, and mental health care here has been badly neglected for years.

    A friend has a developmentally disabled child. I’ve seen the benefits a robust public and private support system can provide (luckily, it was still robust for this specific condition in this area). It turned a scary situation into something very manageable; a stable family life, little stress, and a bright future for his (quite frankly awesome) kid. Moreover, I learned some lessons watching his experiences, including that I had been thinking of kids like his more as “problems” and less as KIDS. A disturbing realization. Yeah, ultimately that was my own flaw to overcome, but I have to wonder: What would I have learned if his family had been left hanging, without the support mechanisms that have done so much?

  12. 12
    Carlie

    There’s also how he treated people with MD – as poor, wretched waifs that he knew better than. His whole schtick with it was “Aren’t these people’s lives terrible? Aren’t you so glad you’re not one of them? They would be NOWHERE in life if it wasn’t for people like ME to help them”. Talk about being a condescending little shit.

  13. 13
    geral

    @Glen #8
    “If you can get rid of polio and pneumonia, why not muscular dystrophy?”

    I believe polio and pneumonia are viral whereas MD, autoimmune, cancer, mental illness are all caused by a combination of viral and/or environmental and/or inheritance factors.

    The former were treated with effective vaccines and proper sanitation in the developed world. The latter will be far more difficult because they are triggered by broad number of possible environmental factors – some of them we largely cannot eradicate, and the risk is embedded in the person’s DNA itself.

    It’s certainly a monumental task so I find the talk of a cure misleading because I think it understates the problem.

  14. 14
    peterh

    No, there is currently “no cure” for MD. But there has been much progress in treating and helping those with MD. My Grandson was diagnosed with Duchene MD when he was 4; the prognosis at that time was to live perhaps a bit beyond 16. So far he’s “cheated” the doctors out of 10 years, is going as strong as one might hope for, and despite his disability enjoys a good life. Some of his treatments have been expensive and demanding but all have been helpful and productive – admittedly to varying degrees. Nearly all of these treatments were unknown at the time of his original diagnosis. Even though there currently is no cure for MD, there’s every reason in the world to keep seeking one.

  15. 15
    Jonathan

    I always thought of it like that cancer charities that work to “cure” cancer. Something that is fundamentally impossible, what with cancer being a highly individual disease. But saying “give us money to cure cancer” gets you more donations than “give us money to find more effective treatments and protocols that will increase the survival rate for some people with some types of cancer”. In the same way, “cure MD” sounds better than “improve the mobility and quality of life of those suffering MD”. If you say the latter, your average person’s first response will be, “Why don’t you just try and cure them instead?”

  16. 16
    Ray Fowler

    Unless people are questioning Jerry’s sincerity to the cause of raising money for an MD cure, then I don’t see how you can really be that critical.

    Social norms change and, at same point, we will age into being politically incorrect.

    Jerry Lewis put forth a tremendous amount of time and effort to helping those less fortunate than him, and for that he will always have my respect and gratitude.

    If you want to quibble about his techniques or perhaps his political incorrectness, perhaps you should take a look in the mirror first to see if you have even committed just a fraction of the time he has to helping the disabled.

  17. 17
    raven

    I always thought of it like that cancer charities that work to “cure” cancer. Something that is fundamentally impossible, what with cancer being a highly individual disease.

    That’s just wrong.

    Today we can cure some forms of cancer sometimes that were formerly considered incurable. The list gets longer each decade.

    Progress is slow and incremental, but considering what we have accomplished in the last few decades, a century from now the situation might be much better.

  18. 18
    Dianne

    If you can get rid of polio and pneumonia

    Pneumonia is very much with us still. It’s case fatality rate is lower than in the pre-antibiotic era, but it is not “cured” in the same way smallpox is. Actually, polio isn’t gone either and is making a comeback thanks to anti-vaxers. (And, to be fair, HIV.)

  19. 19
    Platypus

    PZ, I think you’re wrong about being so pessimistic about a cure. For certain kinds of MD (where the stem-cell population does not replenish itself fast enough, leading to an eventual depletion of the stem cells, followed by muscular atrophy) the empty stem cell niches throughout the body can still send a signal to attract stem cells, which then migrate through the blood to occupy them. But in this kind of MD, the patient’s stem cells cannot respond to the signal because they have a defective receptor protein (dystrophin). But, if you engineer stem cells to express the receptor protein, and reintroduce them into the patient, they will divide to occupy all the empty niches, and replenish muscle cell populations. This makes it possible to achieve a whole-body cure for MD.

    This therapy is still being tested, but it is already in early translational trials.

    http://www.cirm.ca.gov/content/stem-cell-therapy-duchenne-muscular-dystrophy

    Stanford’s Michelle Calos is an *incredible* scientist and (if this research pans out, along with her work on using similar viral integrase technology to treat hemophilia, which has been successful in porcine models), I predict she will receive a nobel prize in another decade or two.

  20. 20
    Celtic_Evolution

    Never was a fan of Jerry’s schtick and pity-filled condescension… but I thought I read several years back about researchers getting positive results treating a specific type of MD with Gene therapy.

    Might have been this, which I lifted from the wikipedia article. I haven’t kept up on it, so I’m not sure what came of it.

  21. 21
    Rev. BigDumbChimp

    Jerry’s a real peach.

  22. 22
    Carlie

    Unless people are questioning Jerry’s sincerity to the cause of raising money for an MD cure, then I don’t see how you can really be that critical.
    [...]
    If you want to quibble about his techniques or perhaps his political incorrectness, perhaps you should take a look in the mirror first to see if you have even committed just a fraction of the time he has to helping the disabled.

    Fred Phelps is very sincere towards the cause of preventing gay people from doing anything, so I really don’t see how you can be that critical. If you want to quibble about his techniques or perhaps his political incorrectness, perhaps you should just take a look in the mirror first to see if you have even committed just a fraction of the time he has towards creating a gay-free society.

    Seriously, go and read stories by actual people who have actual MD who have actually dealt personally with Jerry Lewis. He has actively caused harm to people, and has reacted with anger and denial when confronted with how he treats people with MD.

  23. 23
    Epinephrine

    Actually, polio isn’t gone either and is making a comeback thanks to anti-vaxers. (And, to be fair, HIV.)

    And, to be fair, abuses of people’s trust by compnanies like Pfizer (Superbug writeup) and by the US government also Superbug, as well as the use of an inexpensive live attenuated virus that can revert to wild-type virulence. Hard to run an eradication effort when people don’t trust that you really are intending to prevent disease, either because of drug company shenanigans, governments abusing trust, or the fickle nature of the vaccine making it seem like the polio vaccine actually caused polio (which it does, when it reverts – see vaccine-derived polio virus).

    IPV is unfortunately not available enough, and is expensive, but we’d be much closer to eradication if we’d been using it.

  24. 24
    Carlie

    Here’s a collection of essays by people with MD and what they think about Jerry Lewis.

  25. 25
    uncle frogy

    I watch the telethon when I was kid there were other telethons then to raise money for “disease cures”. none had the impact jerry did. He was shameless he did not seem to care what he said or how he said it just as long as he could manipulate the audience to give more money.
    I wonder how his identification with “Jerry’s Kids” effected his personal career?

    times change some people don’t

    uncle frogy

  26. 26
    raymoscow

    It’s really strange that we’ve had decades of effort to ‘cure’ a genetic disease.

    I don’t want to seem uncaring, but my dad’s first cousin had MD, and he had a bunch of kids, all of whom had a bunch of kids, and their kids are now having kids. A fair number of them have MD or early symptoms of it.

    Passing on an inherited disease, on purpose, just makes no moral sense to me. Have these people never heard of ‘adoption’? (As you might expect, they are mostly very religious.)

    Now for those who inherited the disease: yes, they deserve our compassion and, when needed, our help. But I hope they don’t pass it on to another generation.

  27. 27
    Ray Fowler

    Fred Phelps is very sincere towards the cause of preventing gay people from doing anything, so I really don’t see how you can be that critical.

    Yes, and I suppose that if I thought that what Phelps was doing was honorable, then I might agree with your analogy.

    No one has claimed Lewis was a perfect man, but he most certainly tried sincerely to help those with MD even when that help was not always appreciated by all or delivered as efficiently as humanly possible.

    Comparing Lewis’ decades of contributions to MD research to Phelps’ abominable antigay efforts only reflects poorly on you and how unhinged you are willing to act in order to score rhetorical points.

  28. 28
    raven

    Passing on an inherited disease, on purpose, just makes no moral sense to me. Have these people never heard of ‘adoption’? (As you might expect, they are mostly very religious.)

    Genetic screening would prevent that and they could still reproduce. It’s done all the time, routine.

    That “very religious” part usually gets in the way though.

  29. 29
    Ms. Daisy Cutter, General Manager for the Cleveland Steamers

    Ray Fowler:

    Social norms change and, at same point, we will age into being politically incorrect.

    Many older people are perfectly capable of keeping up with the times, rather than fossilizing in the mores of their youths. I’m sorry that you fall into the latter category.

    As for “political incorrectness,” thanks for revealing yourself to be an asshole who dismisses the effect that your words have on others.

    No one has claimed Lewis was a perfect man…

    There’s a whole lot of middle ground between “perfect” and “bigoted creep who, according to many of the kids he was purporting to ‘help,’ actually did a lot of harm.”

    …only reflects poorly on you and how unhinged you are…

    I’m sure Carlie appreciates your concern.

  30. 30
    Shripathi Kamath

    The sentiment is well expressed in a “Make A Wish” effort fulfilled for one youngster at CERN

    http://cms.web.cern.ch/cms/Media/Publications/CMStimes/2011/09_05/index.html

    An outright dismissal of magic, creationism, dinosaurs rides in museums, and other nonsense for the wonders of physics. Many better ways of “giving hope”, it’d seem

  31. 31
    Carlie

    Ray Fowler, my rhetorical point was that sincerity means nothing. I purposely chose an example that everyone would condemn to point out that it doesn’t matter how “sincerely” someone believes something. What matters is the result of their actions. One of Jerry Lewis’ biggest results is that generations of people think that being disabled is being “half a person” (as he himself so famously put it), and that their lives are horrible and not worth living. I don’t care how sincere he is, that is something he has to answer for.

  32. 32
    ChasCPeterson

    It’s important to note again that ‘muscular dystrophy’ describes a syndrome of progressive muscular weakness and not a specific disease/etiology. There are a number of different types, each with a different cause. Gene therapy for one type will of course be useless against another type with a different defective gene.

    the empty stem cell niches throughout the body can still send a signal to attract stem cells, which then migrate through the blood to occupy them. But in this kind of MD, the patient’s stem cells cannot respond to the signal because they have a defective receptor protein (dystrophin)

    wut

    Links, please–otherwise I will continue to think this is all wrong.

    afaik, dystrophin itself is a scaffolding and structural-connection protein with no receptor activity. And what’s all this about stem cells migrating to fill empty niches?

    One of us is confused.

  33. 33
    p_mersault

    “One of Jerry Lewis’ biggest results is that generations of people think that being disabled is being “half a person” (as he himself so famously put it), and that their lives are horrible and not worth living.”

    Jerry Lewis is an idiot, but give me a break. You can’t lay society’s negative perception of the disabled at his feet. He manifested that pre-existing perception, he didn’t cause it.

    If anything, you could argue that, for as bad as he seems now, he was actually on the upside of the turn. It wasn’t long before he started those telethons that people thought the disabled were 0% a person. People would lock them up in an institution and throw away the key.

  34. 34
    Larry Clapp

    So, is the title “No Jerry, no cure” a riff on the “No Jesus, no peace” bumper sticker?

  35. 35
    Ray Fowler

    Ray Fowler, my rhetorical point was that sincerity means nothing. I purposely chose an example that everyone would condemn to point out that it doesn’t matter how “sincerely” someone believes something.

    I fully understood your point. What I took exception to was your intentionally inflammatory choice of analogy. I realize that it’s the internet and people routinely use hyperbole to make a point, but that was two steps away from going Godwin.

    What matters is the result of their actions. One of Jerry Lewis’ biggest results is that generations of people think that being disabled is being “half a person” (as he himself so famously put it), and that their lives are horrible and not worth living. I don’t care how sincere he is, that is something he has to answer for..

    Results do matter, but certainly within the context of intention. I reject your assertion that “generations of people think that being disabled is being half a person” as simply more unwarranted internet hyperbole.

    I’d wager that most of us actually do think that Lewis’ schtick has gotten old and dated, but that’s simply because Lewis himself is old and dated — not because he’s a bad person. He should feel no shame for both what he tried to accomplish and what was actually accomplished.

    I think it’s human nature to tear down idols and I see little in these criticisms of Lewis amounting to more than that.

  36. 36
    Beatrice, an amateur cynic looking for a happy thought

    p_mersault,

    What’s your excuse for him using the same method up until this year? Times changed, but for him disabled peopled stayed only half-people.

  37. 37
    Ray Fowler

    Many older people are perfectly capable of keeping up with the times, rather than fossilizing in the mores of their youths. I’m sorry that you fall into the latter category.

    insult

    As for “political incorrectness,” thanks for revealing yourself to be an asshole who dismisses the effect that your words have on others.

    insult

    There’s a whole lot of middle ground between “perfect” and “bigoted creep who, according to many of the kids he was purporting to ‘help,’ actually did a lot of harm.”

    insult & unsubstantiated claim

    I’m sure Carlie appreciates your concern.

    sarcasm

    Hang on, let’s wait for the judges.

    Insult: 60%
    Sarcasm: 20%
    Unfounded Assertion: 20%
    Content: 0%
    Logic: 0%

    That gives you a worthless internet troll rating 9.7.

    Damn those East German judges and their inability to detect sarcasm!

  38. 38
    p_mersault

    Beatrice,

    There is no excuse, which is why I think he’s an idiot. He was likely ahead of the curve at one point, but he clearly fell behind. I have no idea whether the good outweighed the bad, I am no student of Jerry’s philanthropic work. To be honest, I haven’t watched his telethon in many years. The programming on those shows was so dreadfully boring.

    It’s definitely curious why he didn’t seem to grow at all. You would think that many people have tried to explain it to him over the years.

  39. 39
    Ms. Daisy Cutter, General Manager for the Cleveland Steamers

    LOL, yeah, I’m the troll. New here, are you? Have you picked up your complimentary porcupine basted in habanero sauce yet?

  40. 40
    Ray Fowler

    LOL, yeah, I’m the troll. New here, are you? Have you picked up your complimentary porcupine basted in habanero sauce yet?

    If you take the time to compose an entire post of little more than personal insults, feigning outrage over having it pointed out won’t really work.

    I do hope that’s not how you actually converse with people whose views you are trying to change.

    My high crime, apparently, was observing that a man who has worked tirelessly for decades to raise money for a muscular dystrophy cure may perhaps not be an evil, bigoted villain as suggested by some. A hard cheese to swallow, I know, but there it is. What will the bridge club think?

  41. 41
    Kristjan Wager

    I do hope that’s not how you actually converse with people whose views you are trying to change.

    Moving from tone trolling into concern trolling.

    My high crime, apparently, was observing that a man who has worked tirelessly for decades to raise money for a muscular dystrophy cure may perhaps not be an evil, bigoted villain as suggested by some.

    Lewis was certainly bigoted, but whether he did more harm than good is certainly something which could be debated. Unfortunately you didn’t do that, you just dismissed the views of others.

  42. 42
    Ms. Daisy Cutter, General Manager for the Cleveland Steamers

    I do hope that’s not how you actually converse with people whose views you are trying to change.

    You’re not worth bothering with in that regard. May I cordially invite you to go fuck yourself?

  43. 43
    Lee Picton

    Jerry Lewis, whatever his faults were (and there were many) at least raised awareness of MD and the diseases helped under its umbrella. As many of you know, the husbeast has ALS, and is still chugging along after 8 years, though he is well past his sell by date. There is a loan closet in our area affiliated with Johns Hopkins, and it serves those with MD, ALS, and a number of related diseases. We have received a Hoyer lift, a Roho Cushion, a brand new manual wheelchair (for emergency backup if something happens to his power chair), full electric hospital beds, and a walker (though I have since bought him specialized walkers). All but the walker are big-ticket items and represent thousands of dollars we have not had to pay out of pocket. I also like to think that some of the money went to the research that has culminated in the recently announced discovery of the cause of ALS. It won’t help the husbeast, but there is now hope for the next generation of sufferers. So, yes, Lewis may personally be a douchenozzle, but I am not going to pile on.

  44. 44
    Carlie

    So, Rey, I find it interesting that you think that Fred Phelps is a horrific person we can all condemn because he says that gay people aren’t fully human, but it’s perfectly ok for Jerry Lewis to say that disabled people aren’t fully human. Why do you think it’s so awful in one circumstance to call an entire group not fully human, but so acceptable to do so in another? Is it the money? It’s ok to call a group not fully human as long as you pay them off to do so? What do you think is the going rate for allowing oneself to not be considered fully human? You obviously think there is a price that can be met, because you’re saying that Lewis should be let off for his opinion given the money he’s raised.

    Results do matter, but certainly within the context of intention. I reject your assertion that “generations of people think that being disabled is being half a person” as simply more unwarranted internet hyperbole.

    Wait – did he provide an incredibly meaningful and valuable contribution, or did he have no effect on what people thought about the disabled? You can’t have it both ways. Either he was very influential, or he wasn’t.

    I’d wager that most of us actually do think that Lewis’ schtick has gotten old and dated, but that’s simply because Lewis himself is old and dated — not because he’s a bad person.

    It’s not “old and dated”. It’s wrong. It’s always been wrong. He’s been told that it’s wrong, and he doesn’t care.

    I’m not saying it’s bad that he’s raised money. I’m saying that yes, he is a bad person for how he continues to view disabled people after hundreds of them specifically pointing out what he’s doing wrong. If you hand someone a wad of cash but then slap them in the face, are you supposed to like it? I simply find it repugnant to say that everything he’s said, his entire attitude towards an entire group of people, should be swept under the rug and forgiven just because he threw a lot of money at it. The MDA is very good at supporting people as they are (more of their money goes towards assistance than most “save people from this disease” groups), but that’s in spite of Jerry Lewis, not because of him.

  45. 45
    Josh

    All of the accommodations, design innovations, and the like that Lee celebrates above were attained thanks to people who believed that “We gotta find a cure” was an inadequate response to disability and that “If you had to live this way, you’d kill yourself” was not an accurate or helpful claim. To the extent that the MDA has turned toward a more progressive view of disability, more power to ‘em; but as recently as twenty years ago they spent a lot of the money they’d raised on going after their detractors.

  46. 46
    Nate

    Speaking as someone that has been personally effected by Muscular Dystrophy (my grandmother, her sister, my father, and his brother all had and died from it), and someone that has been personally impacted by what the MDA provided to all of those people, I couldn’t be more grateful to the MDA for what they did give us. It was never a cure, but it was a number of things that helped them all live better lives. And because of the research they funded, one day about three years ago, I got the news that they were almost certain my family’s type of MD is passed on by the mother, and not by the father. It’s not 100% certainty that I won’t start falling down in about ten years, but it’s a lot better than the certainty I once had that I would.

    I know we’re supposed to step back and analyze things logically and try to leave emotion out of it, but I will freely admit that it is all but impossible for me to do that when it comes to Jerry Lewis and the MDA. Neither are perfect, and I’ll certainly never claim they were, but I’ve been impacted enough to know that I will forever be in their debt.

  47. 47
    Kagehi

    I knew some people with an MD kid, or should say “adult”. I have no idea what his attitude about whether or not he would have liked to have actually had the chance to be anything else was, because by the time he died, he couldn’t feed himself, couldn’t move much, couldn’t talk, couldn’t *anything*. He was in nearly that state for almost ten years, the prior ten, he went from being able to almost walk on his own, to sitting all the time in the wheel chair. His mind was normal, but how *normal* can you be, when its impossible for you to take tests, or read books, or do much of anything other than haphazardly bang a music keyboard, or watch TV?

    It really annoys me to see some people describe there nearly non-existent (or at least not terribly inconvenient, by comparison) problems, like Haemophilia, and compare it to conditions that range from “just a bit more inconvenient”, to basically a living, thinking, person trapped in a body they can’t control, at all. It irritates me even more when some of those people get together than complain that its “unfair” to them if someone else figures out a way to stop it happening *especially* if its some case where 1:1,000 of them might be fairly OK, but the other 999 are condemned to a state where, without all the support structures, and other things built in the last, well, since the MDA, they would be dead, not at almost 30, like our families friend, but, probably 10, or 12, if they managed to survive that long.

    It seems, sometimes, like people that have genetic disorders see only themselves, and what it means to *them* if a solution was found, they ignore the myriad cases where something happens that isn’t as cosmetic, or easily dealt which. And, the whole, “I wouldn’t be me, somehow, if one bloody gene was changed.” WTF?

  48. 48
    Ray Fowler

    So, Rey, I find it interesting that you think that Fred Phelps is a horrific person we can all condemn because he says that gay people aren’t fully human, but it’s perfectly ok for Jerry Lewis to say that disabled people aren’t fully human.

    Carlie, please continue to wallow in your banal sophistry by comparing Jerry Lewis raising millions for MD research to a homophobe who wants to cure gays.

    There is no rejoinder I can make that would reveal you to be so petty as your own clinging to that horrid analogy in order to score a few internet points. Are you incapable of simply taking a step back, like a normal person, and admitting, “ok, that was way over the line. my bad.” ?

    Victims of muscular dystrophy want and need help. Gay people are perfectly happy being gay and do not want a “cure”.

  49. 49
    Classical Cipher, Murmur Muris, OM

    Carlie, please continue to wallow in your banal sophistry by comparing Jerry Lewis raising millions for MD research to a homophobe who wants to cure gays.

    I’m sorry you are apparently having trouble understanding why Carlie used that analogy. But you need to understand that it’s a problem on your end, because the analogy served its purpose. You attempted to use Jerry Lewis’s sincerity as a point in his favor. That’s faulty, for the reason Carlie pointed out – mere sincerity of belief or effort doesn’t say anything about the quality or morality of that belief or effort.

  50. 50
    Mattir-ritated

    It’s perfectly fine for Lewis, at the beginning of his telethon career, to refer to people with MD as living “half a life.” After all, people with handicaps had significant restrictions in their access to a lot of the spaces and activities of what able-bodied people considered normal, both because of stigma and basic accessibility design issues. Lewis was identifying a real problem.

    What is not fine is for his rhetoric not to change as the cultural norms around him changed. People who care about not hurting others adjust their language. We’ve managed to stop calling people all sorts of ethnic slurs. We’ve managed (at least here on Pharyngula, to stop condoning gendered insults. My family, solely because of our reading of this here blog, has stopped using gendered insults almost entirely. All it requires is a modicum of empathy, or even just an ability to say “oh, if X doesn’t like it when I say this word, I’ll stop using it even if I’m all intellectual and don’t understand why it makes them feel so bad.”

    If Lewis’s language and attitudes had changed over the years, no one would be celebrating his absence from this year’s telethon. Sure, he’s done a lot of good, and I admire that. But he’s done some harm, and I wish he had done better.

    Also, I’ve never understood why people find him funny. But that’s another issue.

  51. 51
    tielserrath

    The saddest thing about this is a man who felt the only way he could raise money was to describe the disabled as subhuman and to never see, despite all his opportunities, that perhaps society had changed enough that people would give money to human beings like themselves, who simply needed more help.

    when I tell someone I’m autistic, the commonest response is ‘But you really don’t come across as autistic’, said in an earnest, trying-to-be-nice way. A bit like saying to a paraplegic ‘But it looks to me as though your legs work’. People think that the best way to deal with a disability is to reassure someone that it can be overlooked, that you can simply pretend it doesn’t exist and pass as ‘normal’ rather than ‘faulty’.

    (I tried to describe to a friend the actual experience of being autistic, and her response was, ‘Don’t tell me this! I want to think of you as normal!’ My actual, lived experience of the world is not to be shared, it seems, lest I no longer ‘pass’.)

    I know people are trying to be kind but being accepted as fully human with my disability is what I want. Dinosaurs like Jerry are reassuring people that these old attitudes are still OK, when they’re not. And Carlie is right; raising shedloads of money doesn’t excuse anyone with this kind of influence from propagating the belief that the disabled are less than human.

  52. 52
    Carlie

    Rey, you’re still conflating two separate things. My analogy was, as Classical Cipher explained, specifically chosen to make the biggest impact I could think of with regard to the matter of sincerity being a means to a pass for behavior. There are a lot of people who are very sincere about very bad things. Sincerity doesn’t mean anything, and can’t be an excuse for bad behavior or harmful opinions. You’re conflating that with the money he’s raised, which again is substantial, but you can’t seem to see anything over the money. And on the topic of Phelps and homosexuality, Lewis likes to make fag jokes too, even after he’s been taken to task for it and “apologized”. Is that bad, or if he raises money for LGBT groups would it be ok? I’m honestly interested in your view of how money changes whether someone should be held accountable for their attitude and statements towards a whole group of people based on an inherent characteristic they can’t change.

    If Lewis’s language and attitudes had changed over the years, no one would be celebrating his absence from this year’s telethon.

    Exactly. And he can’t say “but I didn’t know”. He’s been told. And he rejects what people are telling him. His response is basically “No, of course you don’t have a real life. You’re not a whole person. You couldn’t possibly be.”

  53. 53
    Tigger_the_Wing, Back home =^_^=

    tielserrath,

    You wrote the post I was going to – only better, of course!

    Carlie,

    I completely agree with your point. Rey comes across as someone who thinks disabled people are subhuman, and should be so grateful to the real humans for raising lots of money that we should disregard their demeaning language.

    What Rey is refusing to acknowledge is that the world no longer works that way.

    It has always been possible to help someone while still respecting them, of course, even if that were comparatively rare in the past. Nowadays, thanks to awareness campaigns, that is the norm rather than the exception. But Jerry thought the old ways were the best. I am delighted that this year’s figures prove him wrong. His attitude had become an embarrassment and a drawback.

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