Around this time last year, in a BBC movie called Dustbin Baby, 14 year-old Lizzy Clark became the first Aspergers sufferer to play a fictional character with the same condition. The BBC said that rather than employing an able-bodied actress to play the role of Poppy, they casted Clark because she offered a “unique take” on the role.
Speaking to the Guardian at the time, Clark said, “Audiences think they are getting an authentic portrayal of a mentally disabled person, but they’re not. It’s not like putting on a different accent or learning what it was like to be raised in a different era. You can’t understand what it is like to have a mental disability unless you’ve really lived with it. When non-disabled people try to portray us, they tend to fall back on stereotypes that have done our community so much harm in the past.”
With the help of her mother Nicola Clark, Lizzy has gone on to launch Don’t Play Me, Pay Me, a campaign I was reminded of last night when watching the new Hollywood schmaltz-fest Extraordinary Measures. Based on true events, the film depicts the lengths John Crowley (Brendan Fraser), a father of two Pompe suffering children, will go to in order to find a potential cure. Pompe disease, by the way, is a recessive metabolic disorder which wastes away the victim’s muscles. It is a genetic condition which occurs in around one in 30,000 births, and until recently was considered incurable.
Patrick and Megan, the two children in the film, are played by Meredith Droeger and Diego Valezquez. Both have previous minor television credits and are starring in their first movie here. Both are very aesthetic and very obviously able-bodied actors. Both spend the entire film in wheelchairs with breathing tubes inserted in their necks.
In the production notes, the filmmakers are careful to specify that the Crowley family, who’s real-life story the film is based, were involved in each step of the film’s development, from script level through to being invited on the set. In one scene, the real Crowley children are afforded a fleeting presence in the background of one shot. Pompe disease apparently makes one’s tongue swell up and impacts on a sufferer’s ability to smile, such an impact it has on muscle control.
I don’t take anything away from either Droeger or Valezquez. This is a good project to be involved and may well launch their careers as child actors. They’ve taken their chance and done what is asked of them. But I cannot help but feel, when we see pictures of the film’s premiere in which Droeger, all fresh faced, bouncing around with Harrison Ford with the world at her feet, that the film industry is guilty of a grave injustice to a large and mostly silent minority of disabled people.
Sean Penn in I Am Sam, Leonardo DiCaprio in What’s Eating Gilbert Grape, Jamie Foxx in The Soloist. Some pretty big players have been particularly guilty of some acting with a capital A. They’ve succeeded in over-simplified, self-indulgent and thoroughly condescending depictions of disabled people, and they tend to get nominated for an Oscar. In Tropic Thunder, of course, the practice was dealt a pretty brutal satire blow by Ben Stiller in his depiction of Simple Jack. Although uncomfortable watching, it’s possibly the single worthwhile contribution Stiller has ever made to serious cinema.
Unfortunately, Hollywood has a track record of doing this, although in the 1930s it was a different minority: why get a black man to star in a film when you can just black-up a white man. The Jazz Singer, justifiably regarded as a classic for its pioneering use of lip-synch sound technology, is now an excruciatingly embarrassing watch thanks to Al Jolson’s ‘blackface’ routine.
Extraordinary Measures is one of a litany of examples of Hollywood masquerading as a progressive institution whilst propping up a debilitating form of social conservatism. Maybe I’m attempting to fight a losing battle. After all, one of my favourite movies is called Psycho…
