The Williams Boy

 

Lots of people have been reading the post “Roddy, Prince of Darkness,” apparently looking for information on Williams Syndrome. I feel kind of bad about this, because that post was just me venting some stress after our slightly horrific Christmas experience with my partner’s brother, an adult with this non-inheritable genetic condition. I also didn’t want to have to explain the story to everybody who asked “How was your Christmas?” so being able to say “Read the full story here,” seemed a good solution.

But that particular tale is maybe not going to be that amusing for anyone with a Williams kid looking for insight and encouragement and hope, so now that the trauma has faded a bit I thought I’d try to write something more upbeat.

Fiona just got back from an emergency meeting called to try and tackle Roddy’s weight problem and phobias, and they seem to have put together a sensible plan, which involves Roddy going out to buy food with one of his care-workers every day. This provides a little exercise and fresh air, hopefully controls the amount of food brought into the house, and allows Roddy to get used to spending time outside, so his anxiety about falling over will be reduced. We’ve seen how his ability to handle stairs improves markedly within just a few days if he’s staying with us, so it could be that this new regime will produce positive results quickly.

So things are a bit better than they were. Like many people with learning difficulties, and many without, Roddy isn’t the most disciplined character, so he really needs encouragement to do what’s best under these circumstances. His natural instinct would be to glue his ass to the couch and hook three litres of full-fat milk to an I.V. So there’s a balance to be struck between treating him as the adult he is, and making sure he takes care of himself. I don’t know quite where one should draw the line, myself.

But, MY MESSAGE OF HOPE: Williams Syndrome is a complex thing, and the way it manifests itself seems to vary. People with W.S. may share certain passions, phobias, skills, but they’re full of surprises. They are people just like anybody else. Part of the condition seems to often involve an outgoing, sociable nature (even when he’s trying his best not to leave the house, Roddy is chatty and charming with anybody who comes IN), so my advice would be to enjoy the person, appreciate them for the good company they are, and gently steer them to make the best of themselves (Williams folks may need to be encouraged not to hog the conversation or to interrupt others with their own little obsessions, but it’s fairly easy for them to learn this).

A Williams person will grow into adulthood, while retaining certain childhood traits. It’s unlikely they’ll “grow out of” their childhood enthusiasms (in this, they resemble a lot of film-makers). One of Roddy’s school report cards details an incident when he went missing, and was found in a field, looking at a tractor — his love of heavy machinery is as strong today. But he’s a grown man, even if some of his emotions are childlike (maybe ALL emotions are, and it’s just experience that allows us to focus them in “adult” ways?), and his literacy level is well below his verbal functioning.

The rules of thumb with Roddy is that he can do a lot of things for himself, but he needs a bit of supervision. It’s good to encourage him to widen his abilities and do all he can do, as long as you keep an eye on him. Once he’s learned the right way to do something, he’ll need a refresher course once in a while because he’ll let things slide, whether it’s personal hygiene or tucking his shirt in or getting a reasonable amount of exercise.

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Williams people don’t score too well at reading others, which makes them terrible liars. Roddy will try to avoid trouble by the tried and true method of DENY-DENY-DENY, but he’s not good at judging whether his account is at all credible. “Somebody’s spilled Coke,” he explained, when I came in the door one time. A bottle of cola, previously sealed, was now open. Some was splashed on the floor. The front of Roddy’s jumper was wet. He likes Coca Cola to an excessive degree. He was alone in the house.

“Was it you?” I asked.

“No.”

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It’s uncertain what Roddy’s future will be: he’s overweight and he has a dodgy heart, and there are other complications which can beset Williams sufferers. There has already been a bit of a drop-off in his functioning. But he’s still happy, he enjoys what he sees as a good quality of life. How anybody else might judge it doesn’t matter to him, and why should it? He’s made it to his late forties. He’s held down a part-time job for some of that time, and the U.K. system of “care in the community”, which has had some terrible failures when looking after the mentally ill, has been pretty successful with people with learning difficulties. Roddy enjoys a degree of independence that his parents would probably never have believed possible.

Since this is supposedly a movie blog, a quick word about mental handicap in cinema: this is one of those things that movies nearly always get wrong. Lars Von Trier, in THE KINGDOM and to some extent THE IDIOTS, seems to believe people with Downs Syndrome are “gifted with innocence,” or are “holy fools,” a belief system that went out of style around 1500 AD. Sam Peckinpah carries on the “village idiot” approach with David Warner’s character in STRAW DOGS, whose “simple-mindedness” is all plot device and no diagnosis. Jaco Van Dormael’s THE EIGHTH DAY, much-praised for its “sensitivity,” is in fact a sinisterly sentimental tissue of lies with a eugenically-inspired ending where the Downs character thoughtfully takes himself out of the gene pool by rooftop suicide, and everybody sings a sweet song. It’s not “Ding Dong, The Witch is Dead,” but it might as well be. The filmmaker, who has a sibling with Downs, is obviously struggling with some hostile feelings he is completely unable to analyse, and so they wind up expressed in a false and offensive way. Which makes the film a failure as a piece of art.

I think it’s pretty bad when the best handling of the subject comes from the Farelly Brothers, who at least recognise people will all kinds of handicaps as PEOPLE, and therefore suitable material for comedy — I don’t think they’re poking fun, they’re just having fun. But their decision to cast a “regular” actor as Mary’s learning-disabled brother in THERE’S SOMETHING ABOUT MARY may one day look like the casting of blackface whites in earlier Hollywood films, since THE EIGHTH DAY did at least show that people with chromosomal disorders can still be good actors.