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.
YES TO THIS ONE THOUSAND TIMES. I sort of saw “the twist” coming because, you know, I’ve read 100000 books and seen 100000 movies so. (also when they make it all the way to Hawaii and to having “adventures” – nope. Not SCID.) But seeing the twist coming wasn’t the problem (also most teen readers won’t so there’s that) it was everything you mentioned here.
We have SO FEW books about teens with chronic illness that to have one be like BUT NOT REALLY WHEW was a let-down. I mean not every book has to be every thing but it’s still a let-down.
And the “it wasn’t real!” tanked the plot, IMO. Besides taking away an actually chronically ill protagonist who is smart and funny and has ambitions it tanked the believablity of the story in every way. No one notices that her mother, an apparently successful physician because she must have some cash to keep this going at this level, is pulling off this elaborate abuse? Literally no doctor no case worker no ANYONE? A kid with this kind of rare disorder WOULD be on people’s radars so the idea that they are just living there unnoticed or never checked on by anyone? Nope. Because it for SURE abuse and that’s a thing I think the book REALLY winces from. It gets kind of bittersweet and “well who knows if I can ever forgive you!” Forgive her?! Why is that on the victim? Even if it is her mother? She should have her medical license revoked! She tortured you, psychologically and physically for years, and it’s because she has a mental illness (which…no) so how mad should we be? That just really upset me as a reader. And it made me think – if this was a father keeping a daughter locked up and telling her there were demons outside to end the world … well we wouldn’t be having the same conversation.
ANYWAY thank you for this piece – and thank you for also talking about the “when you forget your disability you can really live!” element. Ugh. She was ‘really living’ the whole time – that’s the point and the book gets that so right before the Hawaii jaunt. She has interests, she likes movies and design, she likes to flirt, she longs to connect – she needn’t disregard her disability for all that to be true.
THIS SITE IS THE BEST. Thank you for existing.
Holy CRAP, that has gotta be the exact opposite of how to write a narrative about disability — using one to tear down the other. Entirely a lose-lose situation; glad I didn’t pick this one up.
Excellent review, Jennie! I’m so proud of you. Love the picture!
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Thank you for sharing your honest opinion. I was starting to feel like I was the only one who really enjoyed the beginning and wanted to throw the end into a wood chipper. I still can’t even decide on an honest rating on goodreads because I feel like rather than it being a twist, it was a cop-out. A sick and twisted cop-out.
Thank you! I absolutely hated what the author did with this book, and I’m so glad to find a review that sees it the same way.
I have MCAS (mast cell activation syndrome), so when people ask what I’m allergic to, I just tell them “Everything.” Like you, I have to wear my filtered mask in every store and most crowds, carry Epi-pens and compounded benadryl, and bring safe food and water everywhere I go. I take a ton of antihistamines just so I can leave my apartment and go to work, and my MCAS is relatively mild compared to many people I know.
So I was really looking forward to reading this book, and then it was a huge letdown. I knew she didn’t really have allergies as soon as she got into someone’s car without a mask on, and I was even more convinced when she rode on an airplane (full of people!) and didn’t have a reaction. Even with my mask and meds, I need to chug benadryl to get through a plane ride.
But the worst part for me is that, with autoimmune diseases, people assume all of the time that it’s just “in our heads.” I know so many people in my allergy and MCAS support groups whose own families accuse them of making up their allergies or making up the allergies their children have. This is a life-threatening problem, and it is pervasive in our society, for some reason, and books like this perpetuate the myth.
If you do happen upon some good autoimmune disease books, I’d love for you to pass them on. I need more for myself and to buy for my libraries.
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Picked this book up because it was the first book ive ever seen that mentions scid. I was diagnosed with scid at 7 months old and thankfully to a successful bone marrow transplant i am no longer have any health problems. Liked the beginning and the quirky way it is written but the ending. The ending made me want to throw this book into the trash. I felt disgusted with how this book ended.
Thank you for this review! As someone with a chronic illness that prevents me from leaving my home most of the time, I went through a very similar emotional journey with this book. First half: joy and pleasure at seeing a smart imaginative YA character with a chronic illness living with creativity and possibility and a burgeoning romance. Second half: frustration that I was listening to it on audiobook and therefore couldn’t set it on fire and throw it out the window when I reached the ending. Another version of the “it’s better to die than to live with a serious medical condition/disability” story. Along with the ever-present “disabled people can’t have mutually fulfilling romantic relationships/noble people with disabilities set the people who love them free” trope.
Oh, NO. I thought this was a totally different sort of book. WTF. It’s now off my TBR list. So sad that it gets rid of her disability rather than showing how a successful, happy life can be lived with one. 🙁
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Oh my gosh, thank you so much for sharing your perspective in such a clear-cut manner. I absolutely think you’re right and you were spot on, when you mentioned how it depicts that a person can only have a happily ever after if they’re not disabled. I didn’t pick up on it when I first read it, but I’m glad I read your review.
Geraldine @ Corralling Books
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I was intrigued by the trailer, but something felt off with the mother and so I went looking for information. I figured it was the “I must protect you at all costs” story from the vibes. Now I know to avoid this story. Thank you!
So my bf’s teacher’s son has cp. He has a loving girlfriend and he was the first body building champion in a wheelchair.
He’s still deteriorating and he’ll unfortunately pass in a few short years but he’s loved and lived out one of his dreams.
That’s a book I’d read.
Jennifer, with your anaphylactic allergies and gastro problems, have you ever been evaluated for mast cell activation syndrome? Our lives are mirror images. I started going anaphylactic to everything–meds, foods, even scents. It would either be textbook throat closing, vomiting, or cardiac problems. A friend of mine had MCAS and knew what was happening. I saw a doc, got the tests, and was positive. I live indoors, mostly in bed, because I faint. I was an English/Lit major. My father was exposed to Agent Orange in Vietnam. There’s a group called COVVHA. On their short form, they even ask if you’ve had MCAS or POTS. You probably know so much of this, but I’d love to chat more. Please find me on Facebook. My pic is black and white with a Care About Rare frame for this month. Brooke Swan
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I’d have to say I disagree. While it was nice to have a book about disability and love, it was not the message that Ms. Yoon was trying to push on her readers. It’s just unfortunate that she used disability to get it across. The main message was Life, not unconditional love. It was about taking risk “Life is a gift”. It could be about love too but in a different way than it’s usually written like in “The Little Prince”. It was a great story (and I saw the twist coming too) it just wasn’t the story you wanted it to be.
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I’m glad this review seems to have touched so many people – especially with the movie coming out soon. My allergies have gotten more severe since writing this. I now have 12 official allergens, of which 8 are anaphylactic. I have a new airborne allergy (my allergy to bell peppers went from a severe ingestion allergy to an airborne anaphylactic allergy, at least if they’re being cooked or processed). I have a severe dystonic disorder. But I still finished grad school (with honors!) and I have an EMT-trained acupressurist boyfriend who works as my health advocate. It’s great dating a person who is willing to talk to doctors when you can’t, knows all of your pills and your pill schedule, brings you romantic gifts like ice packs, and takes you on dates to Physical Therapy and doctor’s offices (and sometimes takes me to cleared environments afterwards!).
I wanted to read the story of a nice young couple dealing with one disabled and one able-bodied partner, without the disability being the entire narrative. I’m not very good with romance, but I think I’ll have to write it myself.
Thank you, Jennifer, for your thoughtful review of this book. I, too, suffer from anaphylactic food allergies. This book was recommended to me by someone who had heard of it, but not read it. “It’s a book about people with allergies,” she said. I rushed out to get a copy and started reading it immediately. Finally, I thought. Something for people with allergies, dealing with the issues we face.
And then I got to the twist.
Fortunately, my respect for the public library and the fact that I was reading a piece of their property, kept me from hurling it across the room.
I was heartbroken. This is the representation we get? Finally, a book with a protagonist who has serious life-threatening allergies… only she doesn’t.
And then the really frustrating aftermath: Everyone else seems to love this book. They’re making it into a movie. So the horrible, abelist perspective — your life isn’t really worth living if you can’t live it fully — will get world-wide exposure. I can only hope it will start a conversation about allergy issues and representation of people with allergies and anaphylaxis in literature.
Thank you for raising all of the concerns about the book in your review.
The reason I’m replying directly to your comment, rather than beginning one of my own is this. I want you to write the book you mentioned. I’d love to read a romance about people who are really dealing with issues like these. I am currently writing a middle grade book with a protagonist with life-threatening allergies like my own because I want books that reflect the challenges of these issues out in the world for kids who are experiencing these things to read.
So, please, pretty please, will you write your book, too? I’ll critique for you.
Nothing wrong with the book being about child abuse and mental illness instead of a immune deficiency but apparently it doesn’t handle the mental illness and child abuse very realistically either so we are left with a weird hybrid book that tries to do two things but manages neither well.
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So basically, the book blows up it’s positive story line about disability, ignores the can of worms it opens (mental health, ptsd, severe child abuse), and validates everything through a love/sex relationship that equals happily ever after? Why do we feed teens this drivel? Yuck.
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Pretty much. I wanted so badly to like this book. I really did. It was my first time really reviewing a book, and I plotzed over receiving an official “Advance Reviewer’s Copy”.
A lot of people apparently haven’t realized how problematic it is from the perspective of disability because it does do a pretty good job of crafting a likable interracial heroine, and not treating interracial romance as some alien concept that must result in a star-crossed lovers scenario. And while it was refreshing to see people of different ethnicities fall in love without anyone making a huge flipping deal over it, it just… ugh. So many horrible notes of ableism.
And when I wrote that review, I didn’t really think just how dangerous the “Stop caring for your disability” message is. I was thinking of it from the perspective of a 28-year-old, not a 15-year-old. I can handle the message with an exasperated eye-roll, but apparently some younger disabled people are actually taking this garbage at face value. I saw the trailer for the first time, and wanted to vomit when I heard “I would sacrifice everything for one perfect day”. So you’d actually let yourself die just so that you had a really adventurous day? I do plenty of adventurous things and have many perfect days… within the scope of my disabilities. I’m not going to put myself in harm’s way because nearly dying is “more fun” than doing the fun things I’m physically capable of doing -_-
Thanks for writing this review! I suffer from a few food allergies (ranging in severity), and severe hayfever, but nothing like any of the commenters above have stated. As a teen, I recently read this book and reviewed it on my personal blog before watching the movie. I liked the book, but I never thought of how it could affect a person reading it who actually suffers from some of those things and seeing how the only way for a happy ending was for her to not have the disease at all. I am glad that you chose to shine a light on this part of the book that was skipped over. I did think that it was still interesting because it showed how the mother was so affected by her husband and daughter’s deaths, and also showed how the system failed her in a way by deeming her basically fine to take care of herself and a 6 month old daughter right after losing the rest of her family. But it was a letdown to not see her and Olly have to work through her issues together, instead just getting to live as normal people. I hope that you and/or someone else writes a different book that actually shows a romance story with someone who has real severe allergies.
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Oh my goodness this is amazing. I’m so sick of people making a romantic trope out of chronic/terminal illness and disability especially when it’s done by able-bodied authors who don’t understand what disabled people go through. And then they just, you know, rip representation away at the last second! Thank you so much for this thoughtful criticism.
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YES. You summed up my negative thoughts towards this book so eloquently! I definitely saw the twist coming and I, for one, thought it totally cheapened the story. I didn’t think the author would choose to go the easy route and allow her main character to not actually have SCID and be able to live happily ever after with her one true love. Because of the high praise I had heard about this book, I THOUGHT the author would show Maddie’s development as she has to come to terms with living with her illness and the like. I was extremely disappointed with the end of this book; before that, I was okay with the cutesy love story (even though it felt a lot like insta-love to me).
AND YES I was very concerned about the mother imprisoning her daughter for 18 years. At the end, I think Maddie said her mother was attending therapy sessions and they kind of part ways like it’s no big deal but I THOUGHT IT WAS A BIG DEAL and should definitely receive way more attention than just a few therapy sessions 😤
I thought I was the only one who felt this way about this book when I filmed my review because I had only heard people gush about how much I loved this book and they totally just glossed over all the problems I had with the book! I’m so glad I found your blog and read this post. It was very enlightening!
Great review and insights. The best part, though, is when you described in a comment how you work with your condition and what your boyfriend does for you. Compared to the novel, that rang far more authentic and moving.
As someone with both autoimmune disease and CVID, a rare immune system disorder, that is luckily not as severe as SCID but similar in nature, the premise of this movie bothers me a great deal. Does the author have CVID or SCID? Did she spend significant time with people with SCID? I am angry that someone is using this earth-shattering rare disease as part of twisted plot instead of really getting to the heart of those suffering from these rare but all-to-real diseases. People need to be made aware of those of us suffering from CVID and other immune system diseases – but with real accurate portrayals.
I wanted to like this book. I really did, but your review summarizes my thoughts completely. I liked Maddy up until she met Olly and then was just smothered by Teen Romance. I wanted to find out more about Olly honestly and how he escapes his abusive Dad (something that resonated with me more than Maddy’s storyline). Thank you for your honest review!
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Oooohhh!! I was trying to understand why people said it was ableism but I was missing it, the way you have put it I completely understand now. I don’t think I thought about it from this point of view. I know see how when she still believed she was disabled, she thought she was not going to have a happy ending. She thought she would be miserable and alone forever and as soon as she found out oh no she’s fine, she could do everything and be happy. Thank you for writing this!
Well, the movie based on this book is out,
The review that I read talked about a disastrous third act reveal.
So, I don’t think that they changed anything.
Glad that I sought out the details before I saw the film.
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This was a perfect summation of how I felt about “Everything, Everything”. One of my classmates who is in love with this book recommended it to me, begging me to “GIVE IT A CHANCE!”. With the movie coming out, and all the buzz surrounding it, I decided to. Unlike some other people in the comments, I made a point of not researching the book before I read it. I can’t deal with spoilers. I probably wouldn’t have read it if I had.
For the first half-ish of the book, I loved it. While I don’t have any disabilities, I am bi-racial. I found the kind of representation that Maddy showed wonderful. Usually while reading books that have mixed main characters (*cough, cough* I can count how many I’ve found on one hand), the protagonists whole narrative is revolving around that. It was nice to see someone who had that part of their identity, but wasn’t consumed by it.
It was a sweet, passionate, funny, and classic teen romance that was a firm reminder of some of the good things in life. 5 Fast Questions, French dinner night, architecture dreams! It showed how someone can live with a disability and also love their life.
I began to have my doubts however, when Maddy began to think things like “I’m not really living, I’m just alive”. I’m in 6th grade, and yet have already heard this trope numerous times in both literature and media. What happened to the smart, kind, witty, mc? The arrival of a cute boy next door changes her entire character. While I am all for romance and love, I’m getting pretty sick of the whole “Girl meets boy and wants to give up everything for him because she needs to put him first.” I have never been anything close to “true love” but this always strikes as unhealthy for some reason.
Then things begin to spiral downhill and I began to question more and more. How was Maddy able to obtain a credit card without her mother knowing? Where did she find the money in the first place to buy the plane tickets to Hawaii? How plausible is it that in 18 YEARS of her life, nobody noticed that Maddy wasn’t sick? How did people allow her mother to get away with no doctor visits and doing all care for her daughter herself (which, by the way, is a huge no-no in the medical field- you should never be allowed to care for a family member that way, doctor or not.)? And, most of all, could a person with SCID actually survive planes, cliff-diving, strange food, crowded areas, and hotel rooms? Even though she didn’t actually have the disease, I had to question that if she hadn’t been let outside for years, the effects would have been more obvious.
The end ruined this book for me by using “deus ex machina” or, “God in the machine”. Playing God. I, for one, agree that this is both lazy writing and damaging to disabled people searching for representation and people like me, who could very easily get the exact wrong message from this book/movie. I will not be watching the movie, as I had previously planned.
Thank you for giving me another perspective and seeing that yes, this was bad representation. I hope you do end up writing your book. It is sorely needed.
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