Later this year the Everything Everything movie will come out, and people and opinions (I’m sure) will be divided all over again. If you haven’t read Everything Everything, or even if you have read it as someone who doesn’t delve into book twitter/tumblr or read goodreads reviews, you probably have no idea what I’m talking about. To you Everything Everything (which I’m henceforth shortening to EE) is just a book with an extremely pretty cover and a movie trailer with some serious Beyoncé vocal magic going on.
What EE actually is is complicated (to say the least) and has been debated many times by many readers coming from a lot of different backgrounds. In many ways I have nothing meaningful to add to this conversation, but I would consider it an achievement if I make more readers think about the use of disabled characters/disabilities to further a plotline. I do suffer from a chronic illness which I do consider to be a disability (I’ll go into more detail later). I doubt I’ll actually come to a conclusion about how I feel about EE by the end of this mess of a post, because it’s been well over a year since I first picked it up and I’ve been conflicted ever since, but I do want to map out my thoughts on paper (well, screen) and see if that helps me at all.
First of all I want to say that one of the reasons it is so difficult to discuss EE is that the ‘thing’ that makes it problematic is a major spoiler. If you haven’t read EE you might want to turn back now, but if you do really want to know why EE is considered ableist by some please continue to read. I can’t promise you that EE can still be read and enjoyed knowing this spoiler going into the book but I can promise it is still a good book and this spoiler isn’t going to ruin your life (my friend who hasn’t even touched EE guessed it from the movie trailer), but I want to give you all fair warning to turn back now if you don’t want to be spoiled!
Ok, are you ready?
EE follows the story of Maddie who has ‘bubble syndrome’ or severe combined immunodeficiency, which means her immune system is incredibly weak and can’t fight off illnesses (such as the common cold) like we can. Because of this Maddie has been confined her whole life in the safety of her house, in which everything has been sterilised and all the air is pumped through air filters. Maddie lives her life through her books and enjoys spending time with her mother, one of her only companions. Until a boy moves next door. Olly is charming and slowly worms his way into Maddie’s life, and her affections. Soon she is pushing the boundaries, letting him inside the house, running a few metres from her door and eventually running away.
You see, this whole romance coincides with a coming of age for Maddie, who is turning 18. By 2/3rds through the book Maddie has decided she would rather live for a week outside the spend the rest of her life inside the white house she knows so well.
Maddie and Olly escape to Hawaii (and this is where it gets spoiler-y) and Maddie grows unwell and is hospitalised. Her mother rushes to her side, but it turns out Maddie has reacted badly because her immune system is weak from years of in-use and not because she has SCID. Her mother has made up Maddie’s illness to keep Maddie close to her. Maddie will need to be hospitalised for a while but is otherwise healthy and gets to leave her home and travel the world. The End.
So this is issue number one;
Disabled person + Magical cure = Happily Ever After
If you have any experience with disabled characters in books you’ll know why this rattled people. You NEVER make a person with an incurable disease/disability well again for the sake of a plot. It’s cruel and speaks of ignorance to the many young disabled people who read YA with disabled characters for the representation they can’t find elsewhere. With EE and SCID it’s made even worse by the nature of the illness, people with SCID (rare as they may be) cannot physically leave the space they are in. Nicola Yoon has now presented them with a book about a girl who does leave and finds out she is healthy and can be with her boyfriend and travel the world and go to university. These people never can.
And then we get on t0 issue number two;
‘I’d rather die’
Recently, with thanks to books such as Me Before You, people have started pointing out that this negative portrayal of people with disabilities is all over our media. I know you might be rolling your eyes (and I seriously hope you’re not) but if you woke up everyday to a new book/movie/tv show about a disabled character (and were excited to see yourself on TV) only to find out it’s a euthanasia storyline you’d be upset too. It’s giving the implication that disabled people, especially severely disabled people, are burdens and should maybe consider their options.
So these are pretty major issues to have with a book, probably enough to make you turn your nose up, right? Well, wrong. I like (may even love?) Everything Everything despite it all.
Reasons EE isn’t so awful
Number 1: It does provide (some?) representation
I have rheumatoid arthritis in my left knee. This is obviously a very different illness then Maddie’s, and nowhere near as life changing. What it does mean though is that I have to think carefully about my day, my journey’s, my timings. I have to think about what I can and can’t do, and I’m tired more easily then other people (all standard chronic illness things). I have gone through periods of time were I haven’t been able to walk for weeks, and I’d had surgery six times before I hit 16.
EE came at a very crucial time for me. I was choosing whether or not to take methotrexate, a low level chemotherapy drug with a lot of nasty side effects. I’d been told if I didn’t take it then I’d need a knee replacement within the next five years. I was 18, so this was (and is still) a very scary concept. I’d been struggling with my knee more and more and had left to go to university, so I felt truly helpless when I had a flare up. I didn’t want to be different, I wanted so desperately to be healthy and not to have to consider my hair falling out (one of those side effects I talked about) or spending the next 5 years in constant pain and then having to have a major surgery.
Maddie’s voice in EE was so familiar to my struggle with my illness, the only book that for me has come even close, that I spent the majority of it in tears.
Maddie is turning 18 and is thinking a lot about how she is going to spend the rest of her life, and I was pretty much at that same point (albeit in a much less series capacity). She thinks about the way her illness effects her life, and her helplessness and it really spoke to me.
I have a very vivid memory of being at the point where Maddie writes the letter to her mother, explaining that she is leaving, and breaking down completely on a tube to the point someone offered me a tissue (which never happens in London, we don’t even make eye contact on the underground).
I really do feel like this book helped me at a time where I needed help. And if you’re curious I went with the methotrexate. I still have all my hair (! yay!) but it’s awful in literally every other way. I’m sick a lot, I get motion sickness, my mouth bleeds, I get migraines. But anyway, I can actually move without having to think about it, which is a massive plus!
On to the second thing;
EE is just a story that could be real
Look, I don’t like the whole ‘but it’s just a story!!1’ narrative as much as anyone else. Normally when people say it its to justify overly possessive boyfriend characters, romanticised abusive behaviour in books or (and I shudder when I think of this) the ‘PoCs as savages’ stereotype.
But EE is actually an amazing representation of Munchausen’s Disorder by Proxy, a mental health disorder which makes people pretend their loved ones are ill (often very ill) so they can be needed and keep their loved ones close. This is a very real disorder, and it isn’t even that rare. Living as the ‘patient/ill person’ to someone with Munchausen’s can be life shattering when the truth is revealed, just like it is for Maddie.
This story could very much be real, and HAS been real for people in the past. Books are just written stories, and this one is very much cemented in truth. We cannot pretend that things like this don’t happen.
EE is still an incredibly emotional story about someone with an illness, only that person isn’t Maddie, it’s her mother.
In some ways I curse Nicola Yoon for continuing to make me so conflicted about this book. I have to give her credit for her research into chronic illnesses and SCID, this book would definitely have been a write off if not for the structured story and the Maddie’s strong and beautiful dialogue with the reader.
I still feel like calling it mental health representation is a stretch, seeing as that whole faucet of the story relies on a major spoiler.
I also strongly believe the potential damage to young disabled readers could be big, and I don’t think this book should EVER been seen as disabled representation in YA or recommended to people as such.
However, even though I don’t recommend it to people anymore, EE remains one of my favourite YA contemporaries.
I’m not writing this to ask you to agree with me, I’m trying to show that I can see all sides of the argument and I also understand how soul crushing ableism can be. I’m also writing this because I see so many people recommending it to people as disabled rep, and that kills me inside. If you’ve never before thought of the implications that having a disabled person cured or decide to die can cause in a book before then hopefully this has opened your eyes somewhat.
I’m a strong advocate of not shying away from problems in our favourite books (looking at you SJM fans) and I feel like I wanted to write something that shows that I do have a thought process behind my recommendations and reviews (even though my EE one was written before I had read other reviews which made me reconsider my stance).
I am also a big advocate of open conversations about books, so please respond if you think differently (or the same!) about this book.
A huge thank you to all the people who have changed my mind back and forth again. All the people who’ve been brave enough to review this coming from a personal illness side, to Amanda for talking to me about the mental health element. To all the people who took part in Disability in YA 2016 (which I hosted last year) for the lively discussion we had surrounding the problems in EE. Thank you all for opening my eyes to more sides of the story, I really appreciate the discussion.
It is never my intention to drown out the voices of people who have similar illnesses to Maddie, and therefore have more of a right to speak about how the depiction of Maddie’s illness makes them feel then I do.
And if you’ve come this far and you’ve now decided not to touch EE but you still want a similar story, may I recommend Under Rose Tainted Skies written by own voices author Louise Gornall? It follows Norah who has agoraphobia and social anxiety, and stays inside because of it. She then meets Luke, the boy who lives next door. This book does not offer any magical cures and instead is a good depiction of mental illness and the many problems it can cause. TW for self harm.
Leave a comment letting me know how you feel!