Know Your Enemy

(I just know I'm going to be lambasted for this one. Oh well...)

I have seen a lot in the blogosphere about Jerry Lewis and how many people in the disabled community   think he should not have received a humanitarian award. That Jerry Lewis, despite raising around 2 billion dollars for Muscular Dystrophy (MD), Amyotrophic Lateral Sclerosis (ALS) and Spinal Muscular Athropy (SMA) is not a humanitarian. Money raised alone does not a humanitarian make. 

I became curious about the whole business. What has Jerry Lewis done or said (or not!) that is so horrible?  Would people with Muscular Dystrophy, ALS, and SMA  (or one of several other degenerative neuromuscular conditions) be better off without Jerry Lewis?

Personally, I have never liked the guy. From the moment  I first saw him on the telly, in one of his older, black-and-white movies, where he over-exaggerated every nuance (actually, “nuance” is way too strong a term under these circumstances).  I remember at the time, my beloved Da was giggling at the same movie, while I, all of about 9, was transfixed in horror. I couldn’t understand how a performance could be so overwrought and under-funny at the same time. That experience was an eye-opener for me, because it introduced the concept that people like Jerry Lewis exist. People who are loud, brash and over-exaggerated in almost everything they do.

Years later, probably in the 90s, I saw part of one of his telethons somewhere –I think it was in an airport or somewhere similar where I couldn’t leave and couldn’t change the channel.  I disliked his patronizing and pitying attitude, but then I thought to myself he’s JERRY LEWIS.  What do you expect?  And I listened some more, and realized that he had been on the air for a horribly long time, and he did this every year, and I just had to admire his passion and dedication, even if I disagreed with some of his language and attitudes.

Because –whatever criticism one can level at Jerry, and there has been plenty; here is the one fact I keep coming back to: Jerry Lewis saw MD as a horrible disease and instead of thinking that’s a horrible disease, I’ll donate a few thousand bucks a year and claim it on me tax returns, and leave it at that (guilt presumably assuaged),  he got up off his arse and he really, actually DID something.  A lot of somethings. For over fifty years, through his own illnesses and personal stuff. And it is said he never asked for a penny of payment for his time, which was many thousands of hours. That must represent an awful lot in lost earnings for him

You really cannot fault the guy’s dedication and work ethic.

So aside from some outdated concepts in the telethons –and let’s face it: The man will turn 83 years old next month. How can you expect him NOT to have some old-fashioned notions? How many old people do you know who are politically correct?  Indeed: I just used the term “old people”. What people -young or old, do you know who are politically correct all the time?

 

I decided to find out what Jerry had done that was so bad and had pissed off so many people. I went onto the site The Trouble with Jerry (TTWJ), which is the main protest site and I watched a few of the videos of the protests.  The first thing I noticed was that many of the protesters at the Academy Awards did not appear to have Muscular Dystrophy at all. They claimed Jerry did not speak for them. They are right. Jerry’s causes are MD and ALS, not disabilities in general. Then I noticed discrepancies in some of the Jerry-attributed quotes. “Jerry said to have a disability is to be half a person”.  Well, I happen to be familiar with that particular quote (the original, that is), in context and that’s not actually what he said at all.

These discrepancies piqued the interest of the researcher and analyst in me. What other quotes have morphed with repetition amongst dissenters or have maybe been taken out of context? What did Jerry actually say about people with disabilities?  Is he really a bigot or maybe somewhat misunderstood? 

 

I searched their site for the Jerry Quotes which indicated “bigotry towards people with disabilities. There are 10 of them.  In over 50 years, he has said or written 10 statements (three from the same article),  which some people with disabilities found distasteful, as well as hosting a schmaltzy telethon every year for almost 50 years which is outdated in tone.

10 statements in 50 years! What a complete and utter bastard!  He should be shot rightaway. Or as my sister once famously said "he should be put against a wall and gassed!" Oops sorry! My sarcasm escaped just there.... (Full disclosure,. Jerry Lewis has also said bigoted things about women and the LBGT community, but I am not addressing that here).  Then I looked at some of the actual quotes. Many of them seemed to have been deliberately “misunderstood”. "Jerry said if you are diagnosed with ALS "you might as well put a gun in your mouth"". Yes he did.  TTWJ choose to interpret this statement as Jerry saying that all people with ALS have no quality of life or should be shot. I choose to interpret it as follows:

An ALS diagnosis is a sure death sentence

Which -as of now- is true. There is no cure. And as the quote was taken from a telethon to raise funds for ALS research, I think my interpretation makes more sense than theirs. Spin is interesting, no?

In fact, when I picked through the 10 quotes, I realized the nastiest things Jerry Lewis said about people with disabilities were directed at his detractors; at TTWJ and it's ilk, those demonstrators who have been a thorn in his side for years. They were not directed toward people with disabilities in general.

Now, I started a detailed analysis of Jerry’s article for Parade magazine, the one that seems to spark the most derision from his detractors,  but then I saw that Blake at I Hate Stairs produced a far better breakdown of it, from a better perspective (i.e. someone who has a condition which is similar to MD) than I ever could, so I am going to send you over there to read it.

And then read his brother's piece on the Jerry Lewis haters.

 

Welcome back!

So to my point: “Know your enemy”:  First off, anyone who wants to Jerry-bash (and let’s face it, he is an easy target) should at least afford the guy –and themselves- some basic respect  and do it in a meaningful, well-thought out and  well-researched way, instead of deliberately “misunderstanding” quotes of his  (and now who is perpetuating disability myths?).

And secondly: When I say “know your enemy, I mean know who is your enemy.  Jerry Lewis is not the enemy here. Muscular Dystrophy is the enemy. Jerry Lewis has been fighting Muscular Dystrophy longer and harder than almost anyone on the planet. And while your enemy’s enemy may not be your friend, Jerry Lewis is not your enemy.

 

I have to tell you; -on a personal level, I feel a bit weird about writing this whole piece.  Never in my entire life did I ever think I would devote 1,300 words in defense of Jerry Lewis. I never liked the guy!  And also, this is not my fight! I don’t have MD or a related condition. In fact, I only know two people who do: Stephen Deal, who is a virtual friend, and my friend’s son; -we’ll call him Robbie, who is a little older than my own son, Joe.

Having read Stephen’s blog for months, and having only a tiny inkling of what Robbie and his family are going through, and having been very distressed by their plights, I have to say that I am siding with Jerry on this issue. (in case you hadn’t guessed), He earned that award. Yes, some of his wording and money-raising tactics are old-fashioned, but I suspect Jerry thinks the end justifies the means. And in Jerry’s mind, as in mine, there is only one end: a cure, and almost any means are justifiable.  Because MD is one nasty fucker, which is usually fatal (fast or slow, but degenerative and fatal), and you wouldn't wish it on your worst enemy.

Stephen Deal is perfectly capable of speaking for himself should he choose to weigh in on this topic, so I didn't ask him for any input on this piece. However, I asked Robbie’s father what he thought about the Jerry protesters, and while he wrote a long and well-thought-out reply, I am going to go for the cheap soundbite and only use his last line.

“None of these disparaged people are doing anything to save my son's life or the lives of other peoples' sons. So, they can go fuck themselves.”

Comments

[Blake]

Amen. Thanks for the shout out. I don't think they even tried to understand Jerry's position.

P.S. - Aw, not even the typewriter scene? :-) http://www.youtube.com/watch?v=a7ySmnxy29Q

[Blake]

By the way, the "Activists hate on Jerry Lewis" article was written by my brother and originally ran in Mississippi State's student newspaper, The Reflector.

[Lisa Moon]

As always, an outstanding post, OSM... and I have to say, I fucking LOVED the 'soundbite'! That was truly AWESOME!
Will be checking out those links more in the morning. :)

[One Sick Mother]

Blake,

I amended the description on your brother's piece. (and that typewriter thing was funny!)

Lisa,

Thanks, I loved it too. That's why I let him have the last word, and those of you who know me well, will know how dearly that cost me! ;)

-OSM

[Ben Mattlin]

Sorry, but you've got it very wrong.

I was born with spinal muscular atrophy. I'm a former poster child for the MDA. And though I concede that MDA funds some medical care--visits to a neurologist that are not fully covered by health insurance--it does far less good than it claims, than people like you assume. You have been deceived.

First, the bulk of the money raised goes to "research." But what's included in that research? There is not one important medical discovery that has improved the lives of people with MD or related conditions which can be attributed to MDA-funded research. Not one in some 50 years.

Second, MDA's executives are very well compensated, and there are even rumors that Lewis himself and the other showbiz talent on the telethon are actually well paid as well. Rumors are not proof, to be sure, but I do know of one former MDA top brass who quit in shame when someone questioned his flying first class for the charity. It was always first class, and deluxe hotel accommodations, he told me. Not typical practice for charities.

Given this potential for abuse, Lewis' derogatory comments are relatively unimportant. More significant: Cure is NOT the only hope, the No. 1 priority, the "only one end ... and almost any means are justifiable," as you state. For parents of a dying kid, this may seem to be the case. But what about improving the life of the child with a severe disability, no matter how short that life may be? Isn't this a justifiable priority, a goal, a worthwhile pursuit?

Nevertheless, this is precisely where the MDA falls short. Yes, it funds summer camps for some of its kids. Yet it has been completely silent on issues such as equal education for those kids, or access to public accommodations such as stores, movies and parks, or equal opportunities in the workplace, to give those kids a sense of purpose and hope and--most importantly--a sense of value in our society and self-worth.

If all you're doing is waiting for a cure, it becomes impossible to adjust to or accept life with a disability, to value your life as it is. Yes, in that case you might as well shoot yourself.

True, the MDA can't do everything. Fair enough. So let's be clear: It is a medical charity. It has not saved a single person's life, but it does provide a degree of medical attention for neuromuscular conditions. That is all. So why does it claim to be and do so much more?

Furthermore, medicalizing disability detracts from full inclusion, fairness, equal access--from the very idea of being welcome and respected in society and maintaining self-esteem. Medicalizing disability says MD, ALS, SMA and the rest are not just a part of the diversity of humankind but, rather, blights on humankind, problems to solve and nothing more.

The whole idea of "help Jerry's kids" doesn't help the kids get respect, access, equal education; it doesn't help them learn to feel good about themselves as they are. All it does is say they ought to be like everyone else. They ought to be able-bodied, like Jerry. That's why we consider Jerry a bigot. Through his cause he's saying that these kids aren't good enough the way they are.

In addition, I and others have tried to explain this to the MDA's top managers. My family has always been supportive of the charity, and the head of the local support group once suggested I should take over the leadership of the group because I was making so much sense. So I thought perhaps the MDA executives would listen to my suggestions for updating their message. But to my shock, I received only hostility. They don't want to hear from their constituents!

My only question is, why does Jerry do this? Does he mean well, on some level? Perhaps. But the arrogance in not letting people with MD have some say over their own charity is, at best, akin to like colonialism. At worst, well, even Hitler thought he was doing good by improving the breed.

(Apologies for going on so long. I'd be happy to discuss this with anyone who is seriously interested. Just Google my name. You'll find a way to reach me.)

[One Sick Mother]

Ben,

Thanks for taking the time to post your well-thought-out comment

I totally hear you on the "accept me as I am" front. We get a lot of that in the Autism world: The 'Autism Speaks' people and their ilk on one side, who want a cure for this "terrible disease" and then the adult Aspies on the other who feel quite affronted by this approach, because Autism is a huge part of who they are and they don't want to be "cured" of their essence.

http://onesickmother.typepad.com/my_weblog/2008/10/to-cure-the-incurable.html

The above link states many of my views on cures for genetic conditions. I guess my stance is different on progressive and degenerative conditions. Autism (except CDD) and EDS are not progressive. -OK EDS can cause joint degeneration, but it is generally because of wear-and-tear and not part of the inherent "disease" process.

To take some of the thoughts I voiced in that piece: Do I think a full-out cure for MD et al would be appropriate for all who are already born? No. And because it is genetic, I am guessing most of a cure, were one found, would go somehow to prevention. But what if there was treatment (i.e. "cure" ) that could stop progression (or maybe even reversed it a little bit)? Would I want Stephen Deal to retain what little hand function remains? Yes. I would. Would he? You would have to ask him but I suspect so.

Would I want a way to stop progression degenerative conditions like MD, MSA, SMA, ALS etc? Yes! I think I assumed this was the kind of research the MDA funds. Maybe I am completely wrong. I have not delved deeply into the MDA at all (I believe this is difficult to do).

The points you make about the MDA are well taken, but I do wonder if all are realistic? If I want my Autistic kids to feel good about themselves, there is no way I am going to the ASA or similar to meet that goal. I am doing that at home and in the community. A charitable organization has stated goals, and usually a "cure" is one of them.

Now, yes. I totally agree it would be much better to have people who actually have this and related conditions running the show at the MDA. I am surprised this is not the case (although I did read that Vanity Fair piece. I guess I figured something had changed in 16 years).

I am intrigued by this whole issue. I really want to explore it more. I will research more -when I have time (I am behind on at least one more blog post and a bunch of other stuff in real life) and write at least one more post on the subject.

[yanub]

OSM, indulge me in some pendanticism. I think you are wrong in dividing "progressive" from "degenerative."

From Medicine.net:

Progressive: "Increasing in scope or severity. Advancing. Going forward. In medicine, a disease that is progressive is going from bad to worse."

From Everythingbio.com:

Degenerative disease: "A disease in which the function or structure of the affected tissues or organs changes for the worse over time. Osteoarthritis, osteoporosis, and Alzheimer's disease are examples."

If you do a search with both terms together, you will find a plethora of conditions described as progressive degenerative. Included in that is EDS. We aren't really any different than people with MD or ALS when it comes to our bodies shearing apart on the dotted lines. It's just that the dotted lines are different. And it isn't like there aren't children dying from EDS, either. And adults. Sure, most of the types are not associated with premature death, but all of them are associated with premature debility. And isn't that pretty much true of nearly all disorders--that some people have more severe symptoms and others less severe?

[One Sick Mother]

Yanub,

Good point. I realized when Amy called me out on the scientists in "Charitable Thoughts" and now this, that I have a very bad habit of overgeneralizing a concession when I am trying to make a point. I'll work on that.

Thanks! :)