Roger Ross Williams reacted the classiest way he could to being Kanye’d at the Oscars after his win for the documentary Music By Prudence. As his producer, Elinor Burkett, held forth on “my role models and my heroes—marvelous and energy,” he tried to put the focus back on the subject of his film. “Prudence is here tonight,” he said, half-interrupting Burkett and pointing at a smiling young woman in the audience. Williams has since appeared on Larry King to give what would have been his speech, but he still didn’t say much about Prudence Mahbena, except that she overcame being “born in a country that despises the disabled.”
That’s an understatement if there ever was one. Mahbena had the bad luck to be born with arthrogryposis—a genetic condition that warps the joints in utero, causing them to form improperly—and the worse luck to be born in Zimbabwe, where disabled children are apparently thought to be cursed by witchcraft. According to the film’s Web site, “in their culture, you have to dispose of the ‘weakest link.’ What do you do with disabled children? You kill them. You boil them sometimes. Or you starve them.”
Prudence, now 21, obviously escaped that fate, thanks to the mercy of her mother and grandmother. By all appearances she is cognitively normal. But she had nothing like a normal childhood. Her legs had to be amputated at birth, and her arms were little use. Her stepmother refused to take care of her and left her to sit in her own excrement. She tried to commit suicide, once by drinking cleaning fluid and once by eating a poisonous plant. It was only a scholarship to a school for the disabled that saved her, and helped her find her voice as an extraordinary singer with her own band, whose work you can check out here. (If you haven’t already seen the movie, you’ll have to wait until May 12, when HBO screens it).
How much of Prudence’s suffering came from her disability, and how much came from the fact that she was so badly treated because of it? Certainly, she would have had a hard life even if she had been born in the best circumstances in the U.S. There is no getting around the fact that her arthrogryposis is very severe (although she’s lucky that her brain was not affected by the disorder; if it had been, she probably would have died within her first year of life). But it’s still instructive to look at how patients with the disorder fare in the developed world. They have support groups and chat boards, as well as treatment options that can give them some range of motion and, if they’re otherwise healthy, a long life.
With this kind of support, an arthrogryposis patient with a mild case can have an almost completely normal life. People with the disorder have become doctors and football coaches, painters and entertainers. And here, for instance, is the story of an adopted Korean girl with the condition who is now thriving. Her case is much milder than Prudence’s—it affects only her arms—but the other reason she has done so well is the extraordinary work, time, and resources put into her care by her parents:
When Soo Hee arrived home at 10 months of age, I continued the range of motion therapy by using music and movement. It was a nice time for bonding and exercising at the same time. I continued with this for 30-45 minutes a day until around the age of 15 months … I used to place toys on high table tops to encourage her to reach. I bought a table top stove instead of one that stands on the floor for this reason. We used a TV table with legs on the floor to play with toys on instead of the floor. I would hide little dinosaurs and small surprises inside an egg of [Playdoh] for her to dig out with her fingers. I first started with a very pliable [Playdoh] so she wouldn't get discouraged. I found soft, scented dough at local craftstores. Over the months when we played this game, I would increase the stiffness of the dough, making it myself … She started seeing a private occupational therapist at 1 year, and also had her first pair of night splints fitted for her. I learned a lot from observing her therapist interact with her. It is really necessary for parents to instill these techniques on a daily basis in order for the child to fully benefit. She is entering her 5th year with private therapy.Think of how Prudence might have benefited from all those years of medical care—and how far she's come without it.