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CNN Live At Daybreak

Families Outraged Over Disney's 'Bubble Boy'

Aired August 21, 2001 - 07:42   ET

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
CAROL LIN, CNN ANCHOR: A controversy in Hollywood -- Disney's latest film is a comedy about a boy who is forced to live in a plastic bubble because of his immune deficiencies. But it is not funny to families who have experienced the disorder firsthand and they are demanding Disney pull the film.

CNN's Lauren Hunter reports.

(BEGIN VIDEOTAPE)

LAUREN HUNTER, CNN CORRESPONDENT (voice-over): David Vetter was born in 1972 with a rare genetic disease which necessitated that he live in a germ-free environment.

CAROL ANN DEMARET, DAVID'S MOTHER: At birth, David was placed in a bubble, sealed immediately and he remained so in a succession of bubbles until two weeks before he died.

HUNTER: That was in 1984 when David was 12.

DEMARET: We found things to make up for the fact that we could not hold David or touch David. What was important throughout David's life was that we always had hope and he had hope that some day science would find an answer for him.

HUNTER: So David's mother, Carol Ann Demaret, who works with the Immune Deficiency Foundation to educate the public about the disease, said she was offended when she saw a promo for the new film "Bubble Boy."

(BEGIN VIDEO CLIP, "BUBBLE BOY")

JAKE GYLLENHAAL, ACTOR: It's my first day out in the world.

(END VIDEO CLIP)

HUNTER: The comedy is about a boy who's lived his entire life inside a plastic bubble and his cross country journey to declare his love to the woman of his dreams.

(BEGIN VIDEO CLIP, "BUBBLE BOY")

GYLLENHAAL: I've got to get to Niagara Falls by Saturday to stop Chloe from getting married. (END VIDEO CLIP)

JAKE GYLLENHAAL: It's like the most absurd comedy that you could imagine, I mean, I think with a really big heart.

HUNTER: But Demaret, who has not seen the film, disagrees.

DEMARET: I know enough about the film to know it is very offensive from the very title to the content to the ending of the movie. It is very offensive. It should never have been done.

HUNTER: "Bubble Boy's" filmmakers say the film's lead is a fictional character and they're sympathetic to those who suffer from immune deficiencies.

BLAIR HAYES, DIRECTOR, "BUBBLE BOY": I think once these people and anybody else sees the movie, you'll understand that this movie is not about this disease, it's not about any disease. We're not certainly poking fun at any malady. It's a good, heartwarming story about a hero who goes up against all odds to make it to the woman that he loves.

GYLLENHAAL: It really does in no way poke fun at this disease and, in fact, the bubble boy himself is the hero, you know? And this idea of innocence is the overall message. It's really the metaphor of the bubble.

HUNTER: A young John Travolta starred in a 1976 television movie about a teenager with an immune deficiency, "The Boy In the Plastic Bubble." Mrs. Demaret says that film wasn't about David, though it did help bring attention to immune disorders.

DEMARET: The last generation remembers David and David's life in association with the movie "The Boy In the Plastic Bubble." I do not want the new generation to remember David and David's life with this movie that is silly and offensive.

HUNTER: Demaret and the IDF are asking audiences to boycott "Bubble Boy" and have requested a meeting with executives at Disney. In the meantime, the film is scheduled to open in theaters this Friday.

Lauren Hunter, CNN, Los Angeles.

(END VIDEOTAPE)

COLLEEN MCEDWARDS, CNN ANCHOR: Well, Vicki and Fred Modell are other parents who've been affected by this disease of the immune system. It took the life of their son Jeffrey. They're also upset about the new movie, and they join us from New York. Vicki and Fred, thanks so much for being here.

VICKI MODELL, JEFFREY MODELL FOUNDATION: Thank you, Colleen.

FRED MODELL, JEFFREY MODELL FOUNDATION: Thank you.

MCEDWARDS: Fred, could I start with you? What is it that bothers you about this film?

FRED MODELL: Well, putting apart the question of whether this is an appropriate theme for comedy, here is a film that pokes fun at a disease in which a person cannot fight off infections and there are so many children who have a form of this disease that live with this kind of life that it just doesn't seem appropriate for comedy.

MCEDWARDS: Vicki, is it that for you, too? Is it the fact that this is a comedy that's troublesome? If it were a more serious film like "The Boy In the Plastic Bubble" from the '70s, would you feel differently?

VICKI MODELL: Perhaps I would, but I found this movie to be really tasteless and cruel. And it really makes a mockery of all the children, children like my son and David, who have passed away and really makes a mockery of the courage of the children who have to live with this every day of their lives.

MCEDWARDS: Now, have you both had a chance to see the movie yet? I know it doesn't open till later in the week.

VICKI MODELL: Yes, we did see the movie last evening and quite frankly it was equally as tasteless and cruel as the coming attractions were.

MCEDWARDS: Let me play devil's advocate just a little bit, Fred, to you, if I may. Disney says look, this boy is a hero in this film. It's a comedy. No offense was intended.

FRED MODELL: Well, I don't share the view of the Disney people who say that this is not about immune deficiency. With, throughout the film, the statement is a single germ could kill me, that's why I'm in the bubble. He was confined to this bubble his entire life and it certainly is about immune deficiency. And I just don't think on the face of it that disease or living with that disease is comical.

In addition, I think if we're going to look for heroes and people with courage, let's look at the young people today, many of which we have met, and see what they go through, who have infusions of gamma globulin every three weeks, who miss 30, 40, 50 days of school, who can't plan their lives, who can't be part of friends and the other plans that they want to do. That's courage, living that life.

MCEDWARDS: And, you know, you just mentioned some great information about the disease. And Vicki, I'm wondering if this movie might have the affect you're looking for in the end in that it gets people talking about this disease.

VICKI MODELL: Well, that certainly, it would be a missed opportunity for us if we did not use this movie and I really challenge the Disney company and I welcome them to help us on a journey that we created 15 years ago after Jeffrey's death. I welcome them to help us, to spread the word, to educate physicians, as we have been doing. We have advocated in Congress. We have spoken to law makers who can make a difference. We have asked for more appropriations of funds from the NIH for research. And I welcome this opportunity to ask the Disney company to join us rather than to make a mockery of children like Jeffrey.

Let them help us disseminate the information that we have worked so, so hard to get out.

MCEDWARDS: All right, Vicki Modell, Fred Modell, thank you very much for your thoughts this morning. Appreciate it.

FRED MODELL: Thank you.

VICKI MODELL: Thank you, Colleen.

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