This week, I saw Everything, Everything (Amanda Stenberg and Nick Robinson.) The premise is that Amandla Stenberg’s character, Maddy, has grown up without leaving her house because she has a disability with related to her immunity — SCID, or severe combined immunodeficiency, pronounced, “skid”.
More information on SCID.
Cue Nick Robinson as a cute boy, Olly, who moves in next door and wants to get to know Maddy.
The two are kept apart or inconvenienced by Maddy’s illness. Sad, right? Or confusing. The movie demonstrates that her mother, her nurse, and her nurse’s daughter all come in and out of the house without presenting a threat to Maddy’s immunity. But somehow, Olly poses a threat that cannot be mitigated. Movie stuff, I guess.
This part includes a spoiler.
The pressure and circumstances build up until Maddy takes a trip to Hawaii to make her dream of seeing the ocean come true. Of course, she doesn’t tell her mother in advance, and, of course, she takes Olly with her. In Hawaii, Maddy ends up getting sick, is rushed to the emergency room, and ends up back under the watchful eye of her protective mother.
Plot twist: the doctor from Hawaii calls to check on Maddy and disagrees that Maddy has SCID. Maddy tears the house apart looking for a written diagnosis from a professional, but she can’t find one. It turns out, that Maddy’s mom, a doctor, has been keeping Maddy the house because she’s afraid to lose her.
Surprise! She’s not chronically ill after all.
What if she had been? Would that have been a terrible movie? If she had gathered her courage and gone to Hawaii, made one dream come true, and started plans on making other dreams come true? Slowly, in the pace of a life shaped by illness and struggle. Not triumphant enough?
Damian Wandke doesn’t need a cure.
Come on, now. Disabled people and their experiences don’t exist so that you can feel better about your ordinary life, with its privileges and responsibilities. Being cured won’t make all of disabled people’s dreams come true.
Ableism is a system of thought or biases that places preferential value on able bodies and low value or no value on disabled bodies.
Maddy can be kind and smart and pretty with a chronic illness, but she’s not truly free until she doesn’t have her illness or she’s cured. For some people, though, disability isn’t just a medical state or a condition of being unfree. Performance artist, writer, and actor Neil Marcus suggests,
“Disability is an art. It’s an ingenious way to live.”
Based on this perspective, an article about him states, Marcus aims to live artfully: non-medically, non-stereotypically, and full of soul. In other words, cure isn’t a high priority for many people with permanent or chronic illnesses or disabilities; access and participation are much higher priorities for us. We aren’t waiting for magical medicine or to be redeemed by the love of an able-bodied person. This body is it. Take it, as-is.
Two YA books that don’t prioritize cure:
The Fault In Our Stars by John Green — characters have cancer, but also romance and adventure.
Holding Up The Universe by Jennifer Niven — characters have face blindness and deal with being fat in high school. They also have romance, adventure, and complexity.