I wanted to like Everything, Everything. I really and truly did. It portrayed likable people being likable among nice illustrations and some clever framing devices like school assignments on kissing. It portrayed a biracial heroine whose race is incidental—her parents were just nice people who met, fell in love, married, and had children, though her father and brother were tragically killed when she was just a baby. While books portraying the struggles of biracial characters are important, sometimes it’s nice to read about a character whose heritage isn’t glossed over, but is also not the main focus of the narrative.
But I’m not reviewing the book from the lens of whether the book was an enjoyable read or the characters were likable or even whether it was a positive portrayal of a biracial protagonist. I’m reviewing it from a lens of whether it was a positive, realistic portrayal of disability. And the answer to that is a thudding “No.”
For my credentials, I do not suffer from SCID, like the book’s protagonist Maddy does. SCID stands for Severe Combined Immunodeficiency, a genetic defect of the T- and B-lymphocyte systems that leaves the sufferer extremely susceptible to infectious disease and allergens. The most common treatment at this time is a bone marrow transplant, with “bubbles” of filtered air, sterilization procedures, and isolation being common before donors can be matched.
I myself suffer from severe allergies—one anaphylactic airborne allergy, three anaphylactic ingestion allergies, two ingestion allergies which cause swelling of the face and tongue (currently considered “severe,” may upgrade to anaphylactic if exposed again), two mild airborne allergies, and one ingestion allergy of currently unknown severity. So, I do understand having to be very, very careful in new environments, while Maddy avoids that problem by never going past her front door. I have to read ingredient labels carefully, wear a filtration mask out in public, and keep a comprehensive list of medication allergies on my person at all times, as well as two EpiPens and a bottle of liquid Benadryl. I at first felt a lot of sympathy for Maddy, spending most of her time inside in a controlled environment, carefully checking for allergens. And like me, she attends school online (high school vs. graduate school, but all the same). Hurrah, I thought. The disabled heroine has ambitions. She doesn’t just generically like to read, she writes clever little reviews of the books she’s reading. She involves herself in her books. She is interested in architecture. She doesn’t really seem to have a life plan for a from-home career, though, which is what gave me my first inklings that something was off.
Maddy’s world is turned upside-down by the arrival of the handsome boy next door, Olly. She watches him through the window. He notices, and performs charming, adorable pantomime theater for her. They begin to IM. He assumes she’s grounded. She takes a while to tell him about her condition, out of shame—which I’ve never felt, but, then again, I’m a different person. Who am I to say some people don’t feel ashamed of their wonky immune systems? They flirt, they persuade the home nurse to let him inside, they deal with the no touching policy, they break the no touching policy, they elope to Hawaii …
And that’s where the major flaw of this novel comes in. Not only does it trot out the tired old chestnut of “You aren’t living with disability unless you LIVE! Throw caution to the wind, stop caring for your ailment, and accept mortality, or else you’re just existing!”, but in the end, the book is not about disability. Major spoiler alert:
The book is about child abuse. Maddy does not have SCID. Instead, her mother seems to have a bizarre, overprotective form of Munchausen’s by Proxy, which is officially diagnosed as paranoid PTSD. This is contrasted to Olly’s father’s more traditional get-drunk-knock-the-family-around form of abuse, but it’s still what the book is about. Her mother comes across as sweet and loving at the beginning of the book, making time to spend with her teenage daughter, sharing family jokes, doing what she can to make life as happy as possible for a girl whose body keeps her under house arrest—but as soon as the Olly plot really kicks in, she begins showing frayed edges when she fears she might lose her baby girl. This deteriorating mental state seems like another kick in the pants to the respectful, sensitive narrative the author was crafting at the beginning, and made me feel more disappointed than I would have felt in a book that hadn’t started so promisingly.
The eventual happy ending is: Yay, Maddy, that nice young lady, is not in fact disabled, she just has a weakened immune system from her mother’s abuse of keeping her locked in a bubble house for eighteen years in response to her father and brother’s traumatic deaths in a car crash. A few years of gentle exposure to diseases and allergens, and she’ll be right as rain. I nearly threw the book when I read that. The nice young couple doesn’t have to deal with work-arounds like filter masks or gloves or pill schedules or signing up for the marrow waiting list. They just need to be extra careful during flu season, while Mom needs some intensive therapy.
And there is the ableist narrative in all its horrible glory: you can’t have a happy ending if you’re still disabled. Happy endings and true love come to the well-bodied. I suppose it was a nice bone to throw that Olly loved Maddy even when he thought everything could kill her (in which case it’s stunning that they had sex with regular condoms—latex is such a common allergy that you’d think she’d mention specifically getting hypoallergenic ones just in case), but the happy ending is still “Nope, not really disabled, just a victim of a traumatized mother, whose PTSD made her too overprotective to let me out of the house!” So much for earning your happy ending.
I’d give it three stars out of four for the opening, and one star out of four for the closing, averaging two stars in total. It’s still a nice book about nice people, but it’s a deeply problematic narrative. Disability is not just a romantic hurdle to get over, nor is it a guarantee of bad parenting. Characters with disabilities get little enough representation, and when a disability that could conceivably work against the love and sex life of a disabled character happens, it feels rather insulting to not show any work towards those issues that real disabled people might face, instead hand-waving away all their issues for the happy ending. Especially a happy ending that comes at the expense of scapegoating another disability.