September | 2001 | SCID Stuff

Bubble Boy Brouhaha

September 3, 2001

Monday, Sep. 03, 2001

Nobody would mistake Bubble Boy, the Disney Touchstone movie that opened last week, for high art. It’s full of the tasteless humor and crude pratfalls that appeal to fifth-grade boys. Critics have called it a “gross-out comedy.” But at least one boy was not amused. “I was just furious,” says Jason Shuman, 10, of Sudbury, Mass. “I thought it was a movie that shouldn’t have been out in the first place.” No wonder. Like the film’s hero, Jimmy Livingston, Jason suffers from an immune-system disorder that makes him highly susceptible to infections. And he and his family don’t think the illness is funny at all.

He’s not alone. All over the country, victims of similar diseases and their families and friends are outraged by Bubble Boy, which they say trivializes and misrepresents a life-threatening condition. They have asked Disney to add public-service announcements to all screenings and to contribute to immune-disease organizations; some are asking consumers to boycott the film. “It’s really crossing the line,” says Marcia Boyle, founder of the Immune Deficiency Foundation in Towson, Md. “Can you imagine a movie that makes fun of kids with cancer or HIV?”

Worse yet, says Boyle, the film specifically, if inadvertently, trashes the memory of the only person who has actually lived inside a bubble. David Vetter, of Woodlands, Texas, died in 1984 at age 12 from severe combined immune deficiency (SCID), the most serious form of the disease. Doctors tried to keep David germ-free by putting a plastic barrier between him and the world. It ultimately proved ineffective, and soon afterward, new treatments, including bone-marrow transplants, came along to make such experiments less urgent. Nonetheless, about half the 50 kids born each year with this type of immune deficiency still die before reaching adulthood.

Disney is not the first to exploit Vetter’s story for laughs. In an episode of Seinfeld (a production of Castle Rock Entertainment, an AOL Time Warner company), the character George famously ripped open an obnoxious bubble boy’s capsule. Disney’s position is that Bubble Boy makes fun of nobody and that Jimmy Livingston is “a resourceful, courageous and heroic character.” Realizing their predicament, however, company officials have privately told victims’ groups that Disney may be prepared to aid them in their public-awareness campaigns.

–Reported by Nadia Mustafa/New York

With reporting by Nadia Mustafa/New York

linkback url: http://www.time.com/time/magazine/article/0,9171,1000676,00.html

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What is SCID?

Severe combined immunodeficiency disease is the most serious primary immunodeficiency disorder. The defining characteristic of SCID is the absence of T cells and, as a result, lack of B cell function as well. Unless these defects are corrected the child will die of opportunistic infections before their first or second birthday. SCID can be caused by several different genetic defects, most of which are hereditary. In the past, children with this disorder were kept in strict isolation, sometimes in a plastic isolator or "bubble". Bubbles are no longer used as a standard of care, but the name remains a part of the history of SCID.

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