Sunday, 1 March 2009

Jerry Bashing

Every so often I find myself writing on subject about which a few days earlier I had no intention of even mentioning. Indeed, the subject of today's post has barely entered my consciousness in the last 40 years. As a young boy I would sit with my brothers and watch black and white movies on our black and white television on a Sunday afternoon. Occasionally there would be a screwball comedy featuring Dean Martin and a gangly, goofy guy called Jerry Lewis who mugged and gurned his way through a series of wacky adventures until Dean got the girl.

Roll on 40 years and Dean has gone to the Rat Pack in the sky and Jerry has just about vanished from our consciousness here in the UK. On the other side of the Atlantic however, Jerry Lewis is famed for fronting an annual Telethon to raise funds of the Muscular Dystrophy Association and last week was honoured with the Jean Hersholt Humanitarian Award at the Oscars in recognition of decades of raising money and awareness for and about the condition. Standing ovations all round, wipe away the tears of gratitude and on we go. Or not.

Outside the Oscar ceremony venue a handful of protesters gathered to wave placards and spit vitriolic bile against the academy's decision to honour Jerry Lewis. Overly sensitive film critics? Apparently not. These were your genuine wheelchair bound, ventilator using, crutch waving disabled folk, outraged that this 83 year old comedian was being recognised for his humanitarian goodness. Why? Because, he has dared to patronise us! Because he has offended our civil liberties! Because he's not 100% pc! Because he ONLY managed to raise 2 BILLION dollars! (Sorry, forget that last one.)

Apparently Jerry has said a few things that has upset these fine (non)upstanding people. I'll send you over to Blake and Matt at I Hate Stairs and Paula at One Sick Mother for reasoned analysis of the situation and to The Trouble With Jerry for the protagonists point of view. You have a quick look while I have a cup of coffee.

One cup of coffee later...

So to summarise, the The Trouble With Jerry brigade see the awarding of the Oscar as tantamount to endorsing bigotry. Jerry Lewis evokes pity for MD sufferers as a means of fund raising. It's not a cure we need but a respect for our civil liberties, an appreciation of our value in society. Jerry perpetuates an old fashioned view of the disabled person as a sufferer, trapped by their condition and their wheelchair. Don't give us money, give us respect. Blake and Matt, on the other hand, say bugger that, give us a cure. Paula thinks the protesters are being obtuse by targeting Jerry, who has, at no small cost to himself, actually got up off his backside and done something practical about tackling the real enemy – Muscular Dystrophy.

In some ways I admire the anti-Jerry protesters who have organised themselves, no doubt overcoming considerable physical obstacles, to get media attention for their cause. They seem, for the most part to be young and earnest, believing themselves to be little Davids battling the Goliath of old-style attitudes to disability. They don't want your pity, they don't want your money, they want your respect. They aren't seeking a cure because that demeans them as vital fully human citizens who aren't sick but are merely differently-abled. Jerry is the antithesis of such right-on, can-do attitudes. He doesn't really care. He just wants his face on the telly doing something 'good'. In fact, it's not Muscular Dystrophy that's the problem, it's Jerry and his patronising $2,000,000,000. Don't reward him – string him up.

Or may be not...

Oh for things to be as black and white as those long a go movies. Disability good, Jerry bad. Listen kids, it's not that simple.

Firstly, some of us with MD do want a cure. Muscular Dystrophy is truly horrible disease. It strips away your physical abilities year by year, month by month. (Speaking from my own experience) First you can't run fast, then you can't run at all. Then you can't walk. The muscles in your face dessert you, blanking your expression and causing some people to think that reflects your mind. You can't lift your arms above the shoulders, you can barely move your legs. Your eyes don't close when you sleep so they are constantly dry and scratched. Eventually you can't move when you are lying down, cramps and sores can become a problem. As the muscles weaken further you can no longer raise a fork to your mouth and you have long since lost the ability to dress or shower yourself. You become more and more dependent on the people who love you or on professional carers. You can be woken by a stranger and minutes later be stripped naked by them and have them help you on the toilet. And it hurts. Sitting or lying in one position for hours at a time and then being hoisted can pull or tear those remaining muscles or stress unsupported joints. Your diaphragm fails. As your breathing is slowly compromised your lungs become less efficient at exchanging gasses. CO2 builds up and you feel sleepy and have headaches all the time. To counter this you begin using a ventilator, at first at night and then more and more during the day. You catch a cold but you can't cough the phlegm from your lungs. It feels as if you are drowning; you are prone to pneumonia. Your breathing affects your speech. Your days are spent in a wheelchair from which you have to dine, work, relax and travel. It's okay for all those purposes but perfect for none of them. As the muscles in your back weaken further your spine curves and your ability to balance deteriorates. Travelling becomes even more difficult and your world becomes a little smaller. And you never know which physical part of you will be shaved away next. You know it never gets better, only worse.

So, yes I'd like a cure. It's too late for me but for the generations behind me there is real hope. But research costs money, billions of dollars. Now where will we get that kind of money from?

Jerry Lewis was old fashioned when I was a child. I'm sure some of his attitudes are rooted in the age he was raised and may not be entirely politically correct by today's ever changing standards. (Apparently he thinks cricket is a 'fag's game'.) But, as Blake and Paula both beseech, look at what he has said about Muscular Dystrophy and disability in the context in which he was saying them. If you can't do that then you are being obtuse and picking a fight for all the wrong reasons.

Telethons are, by their very nature, uncomfortable to watch, especially if you are the focus of their worthy attention. To work they have to evoke pity for their subject or paint them as in some way inspirational (not a problem for me, obviously). But unless you can come up with a better way to raise the kind of money they raise then don't focus your attention on those who organise or front them but on the iniquities that make them necessary. I know it is simplistic to point out that if a fraction of the money and effort spent on military research was diverted to researching cures for conditions like MD then huge strides would be made almost instantly, but it is true.

So, to the earnest and angry young people at The Trouble With Jerry, stop picking on seemingly obvious targets like elderly comedians who have dedicated their lives to a cause, and start focusing on using your undoubted talents to make real changes to a world full of worthy targets. Anything less shows you to be petty, ungrateful and ignorant. The trouble is not with Jerry, it's with you.


  1. Really interesting stuff and lots of food for thought. I see what the pro-Jerry camp are saying, and I also understand that MD has a much higher profile in the USA than in the UK BECAUSE of Jerry's campaigning. But it still makes me very uncomfortable. Maybe if I'd grown up in the US and gone to MDA summer camp, or been at special school or something I would feel better about telethon and Jerry Lewis. But those images of "poor children living a terrible life and hoping for a cure" had a very bad effect on my mental health as a young person growing up with MD. I do recognise that a cure (or at least a treatment) would be a good thing, but so would decent access to appropriate housing, equipment and social care.

  2. One phrase jumped out at me when I read this post 'Differently-abled'.I've never heard that before.I love it and will use it from now on - it says so much...

  3. Stephen,

    Thanks for weighing in on this, I very much appreciate your opinions and insight, as always.

    Although, having said all I said, I have been in e-mail contact with one of the Jerry Detractors (who is more of an MDA detractor, actually) and I have to say, he makes many very good points (see the comments on my Jerry post). I have not finished with this topic.



  4. I do know someone with MD in the US who supports the MDA very much but who really does not like the telethon, though she's not vocal about it--it really does have a strong impact on people's perceptions here and she was reluctant as a young adult to mention her diagnosis because of it. I think the tone of the campaign embarrassed her.

    I do think that both sides have valid points and that at times MDA has over-relied on Jerry Lewis. No one person should have the job of speaking for so many--that's a difficult burden. The problem is that disablism goes far beyond any statements of Jerry Lewis, which are slight in comparison to what we get in the outside world. In the one Parade article, he did bring up important points that many people just don't think about in terms of access at home, but the half a person statement does bother me even though I don't think it was said from mal-intent.

    As far as alternate fundraising activities, I like the breast cancer races, which have raised as much money and spread out the responsibility. People die of breast cancer, just as of MD, but the representations feel more diverse, with more people given a voice. And it feels more high- energy positive. There certainly are celebrities who have done a lot in this regard, but they're not burdened with speaking for everyone. With the exception of Mattie, we don't have a lot of people with MD that people know about.

    Remember that people used to have a huge stigma against breast cancer and that it was spoken about in whispers, as if the patient had done something wrong. The breast cancer organizations changed that. It would be nice to have similarly empowering depictions of MD in the public eye beyond the MD/disability community.

    I just wish there were more open conversations about this, that people (activists and Jerry and observers) could attempt to work something out. Or that MDA would make further public efforts at other representations.

  5. 'Men, Stephen!


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