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'Everything, Everything' Draws Criticism for Its Portrayal of SCID and Disability

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Editor’s note: This article contains spoilers for the movie “Everything, Everything.”

Disability activists and rare disease advocacy groups like the Immune Deficiency Foundation (IDF) are speaking out against “Everything, Everything,” a new movie based on a book by Nicola Yoon, about a young woman with severe combined immunodeficiency (SCID).

The film, which comes out on Friday, tells the story of Maddy Whittier (Amandla Stenberg), a teenager whose mother prohibits her from leaving the house due to fears her immune system cannot handle the outside world. Whittier then falls in love with her new neighbor, Olly Bright (Nick Robinson), who convinces her to “risk everything… for love” and go outside.

“It is frustrating to see Hollywood rehashing the same tired storylines that go back to ‘The Boy in the Plastic Bubble’ in the 1970s,” Carol Ann Demaret, the mother of David Vetter, whose story the movie “The Boy in the Plastic Bubble” is based on, told The Mighty. “While playing off the theme of the isolation people with SCID supposedly face is a convenient device for storytelling, these narratives are completely false. They help to spread misinformation that is harmful to people living with this disease, hurtful to parents, like myself and thousands of others who have tragically lost a child to SCID.”

Others, not necessarily in the rare disease community, say the film also promotes the idea that people with disabilities cannot lead full lives.

During the course of the movie, it is also revealed that Whittier doesn’t have SCID. Rather, her mother has Munchausen’s syndrome and has faked her daughter’s illness all these years.

“The plot twist at the end where it is revealed the main character never actually had SCID is particularly upsetting,” Marcia Boyle, president and founder of the Immune Deficiency Foundation, told The Mighty. “Most people with SCID and other [primary immune] diseases don’t exhibit visible symptoms, so accusations of hypochondriac behavior is something our community deals with all the time and the reinforcement of this false stereotype is both worrisome and dangerous to us.”

IDF hopes by getting out in front of the movie, it can help people better understand SCID and the challenges those living with a compromised immune system face. The organization said in a statement:

The reality is that people with SCID are not forced to live their lives in a sterile environment, which is an antiquated notion that has not been the case for many years. In fact, it was never a standard treatment, having only been used in a handful of cases. Most persons with SCID who have received treatment lead healthy and productive lives with no need to shield themselves from the world.

IDF understands that the concept of being forced to separate yourself from the world is an enticing tool for storytellers, but IDF would hope that entertainment is not an acceptable reason to do harm to an already vulnerable group by spreading false information about their condition.

Boyle added:

Rare disease groups like the Immune Deficiency Foundation face so many hurdles to raise awareness about the symptoms and realities of living with a chronic disease, so movies like this are a real step backward for our community. In the future, we would ask that writers and filmmakers take the time to research the conditions they intend to portray instead of exploiting them through detrimental and completely false representations.

Originally published: May 17, 2017
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