Film Highlights Hepatitis Research on Kids With Disabilities
" Willowbrook," a film that highlights hepatitis research on disabled children during the 1960s, was screened in New York last weekend as part of ReelAbilities, a festival that features disabilities in film.
"It was unanimously accepted by our board," said ReelAbilities director Isaac Zablocki. "When we saw it, there was no question we wanted to keep it."
Although it is a work of fiction, the film is based on the Willowbrook State School, which was an institution in Staten Island, N.Y., for children with intellectual disabilities until the late 1980s. During the 1950s and 1960s, some children there were purposefully exposed to hepatitis for research.
The film follows a new doctor, Bill Huntsman, as he learns what the research patients endure for inpatient care and must decide whether he wants to participate. Huntsman's superior, known only as Dr. Horowitz, explains that parents willingly give consent for hepatitis research on their children because they think they have no other choice. The non-research ward stopped taking new patients, but the research ward will take children in if they undergo a hepatitis injection.
Although neither director Ross Cohen nor screenwriter Andrew Rothschild had personal connections to Willowbrook, they stumbled upon it and were intrigued, Cohen said.
"The main ethical issue, apart from the fact that doctors are supposed to do no harm, is that the decision was not done freely," said Cohen, 29. "It's based on the fact that the school was full, and they weren't taking any more people by the end of '63."
All of the children in the film, with the exception of the lead actor, actually had disabilities. They live in California with Ann Belles, who has adopted and parented 59 boys with disabilities since 1989. She also runs non-profit and a supported living program for adults with disabilities.
"They were really cool about taking part in it," Cohen said. "It was fun for them, I think."
Although all of the actors spent time with Belles' children, no one spent more time with them than Zachary Winard, the actor who played Brian Sussman, a teen whose intellectual disabilities rendered him unable to speak. In the film, Sussman is a boy whose mother debates whether to sign the consent forms for hepatitis research.
"People look for that authenticity," Zablocki said, adding that it usually takes a director with a disability or an actor with a disability to get the right feel in a movie.
He said thousands of people attend ReelAbilities, but only about half of them have a disability or are connected to someone who does.
"It's both to raise awareness and to bridge gaps," Zablocki said. "We look to reach beyond disabilities and reach the mainstream community."