FRIDAY, Aug. 24, 2001 (HealthDayNews) -- The Disney movie Bubble Boy, opening today, is finding itself anything but immune to criticism. But unlike most films, the advance pans have nothing to do with its quality.
Bubble Boy is a comedy about the misadventures of a teenager born without an immune system. Advocates for children with immune disorders say the movie is insulting and are calling for a boycott.
Chief among the protesters is Carol Ann Demaret, the mother of David Vetter, the young man who was known to the world as the "boy in the bubble."
"I think the title and content and the fact that they have portrayed the young man in this movie as a hero -- when he is not a hero -- is an insult to David's memory," says his mother. "I feel the movie ridicules the thousands of children and young adults who suffer from a primary immune disorder."
David died in 1984 of X-linked severe combined immunodeficiency disease (SCID). The Immune Deficiency Foundation says David was the "only boy who ever really lived in a bubble."
From birth until age 12, David lived his life in a specially designed plastic, antiseptic environment, complete with filtered air, while researchers struggled to find a cure. The plastic environment was created for him before he was born, after his brother had died from the same genetic disease. David died after receiving what doctors had hoped would be a promising cure: a bone marrow transplant from his sister.
"I was hoping I could plead with Disney to use their good judgment and not release the movie," Demaret says. "The title of that movie was exclusively David's. He knew he was the 'bubble boy,' and that's because he lived his entire life -- from the moment of birth until two weeks before he died -- in a bubble."
Demaret says she sent a letter to Disney's chief executive officer, Michael Eisner, but has not received an official response.
"A representative called about four days ago and they said they would call back. The director [Blair Hayes] and the producer [Beau Flynn] of the movie called back the same day. Mr. Flynn and Mr. Hayes said they were not aware that there was a real live person called the 'bubble boy,' " she adds.
The movie, a release from Disney's Touchstone Pictures division, is about a fictional character named Jimmy Livingston, who lives in a bubble because of an unnamed immune system disorder. Upon learning his childhood sweetheart is about to get married, he constructs a portable bubble and travels to Niagara Falls. Many of the comic moments revolve around his bubble. For instance, he gets bounced around at a concert, and a bird tries to pierce the protective coating.
"When we heard about the movie, when we saw trailers and our patients called us about it, we initiated [an] effort to get the movie pulled," says Marcia Boyle, the Immune Deficiency Foundation's founder and vice president for organization development.
The foundation is now calling for "you, your friends and families to boycott this movie."
Disney released a statement calling the protagonist "a likeable young man" who chases his dream despite his illness.
"We are sensitive to the concerns raised on behalf of those with immune deficiency, and we want to assure them that the film portrays Jimmy Livingston as a resourceful, courageous and heroic character," the statement said.
There are more than 80 genetic diseases of the immune system -- X-linked severe combined immunodeficiency disease (SCID) being the most severe -- and more than 50,000 patients are currently diagnosed with the disorder in the United States, according to the foundation.
The disorders leave young sufferers susceptible to any number of recurrent diseases and can result in fatal lung, gastrointestinal and sinus infections if doctors fail to rebuild a working immune system. SCID can now be managed with a complete bone marrow transplant before the age of three months, which can reconstitute the immune system by as much as 90 percent.
Demaret worries that protesting the film will only provide Disney with free publicity.
"I had to give that a lot of thought," she says. "The more you object, the more you call attention to it. But I have faith in the public. . . The public will force [Disney] to think twice about ever attempting to do this again to the revered memory of anyone."
"To focus on a disease, and treat it with such disregard, is an outrage," she adds.
It's not the first time Disney has been in hot water about a comedy that uses a disorder as its premise. The release of the live-action Mr. Magoo in 1997 caused howls of protest from advocates who said the feature was offensive to blind people. Disney responded by adding a message at the end of the film, saying it was "not intended as an accurate portrayal of blindness or poor eyesight."
What To Do
For more information on primary immune deficiency, see the National Institute of Allergy and Infectious Diseases or the Immune Deficiency Foundation.
