Last Wednesday, I posted some thoughts on changing my mind about books, particularly ‘Everything, Everything by Nicola Yoon. When I first read this novel, I raved about how much I enjoyed it and appreciated the representation of people of colour and that it included a character with a disability/chronic health condition. I was uncomfortable with the ending but my love for the rest of the book outweighed that. Since I first posted that review, I’ve thought a lot about the way disability is portrayed and the more I’ve thought about it, the more uncomfortable and upset it has made me.
In ‘Everything, Everything’, Maddie has an immune disorder known as SCID which means she can not go outside or she would become seriously ill. However, at the end of the novel, it is revealed that Maddie never had this condition and she is in fact, perfectly healthy. It is this revelation that allows her to be with her boyfriend and have a ‘happy ending’.
This is an incredibly frustrating trope in literature where a character who is living with a disability is suddenly cured and all their problems are solved. Not only is this a very unrealistic portrayal of people who live with disability/chronic illness (that’s not to say it never happens but many people with a disability or chronic illness will have said condition for the majority if not all of their lives) but it sends the message that people can never be truly happy whilst they have a disability. I can tell you first hand that this simply isn’t the case.
The fact that this kind of representation was included in a Young Adult novel is even more troubling. Young people with disabilities who read novels which contain this kind of representation of people with disabilities will start to believe that having a disability devalues them as people and makes their life less worthwhile. There is so much negativity surrounding disability in the world and for many, literature and fiction is a safe place to turn to where they can feel accepted. How can this be the case for young people with disabilities when they are quite literally erased from stories?
As somebody who has lived with a disability all my life, I completely understand the frustration that comes with having to miss out on things as a direct result of my disability. There is a fine line between not letting your life be defined by your disability and accepting where your limitations are. However, the message of ‘Everything Everything’ is very clearly ‘living with a disability isn’t living’. Maddie is persuaded to leave her house and run away with her boyfriend because he can’t handle dating someone with a disability. Dating and relationships are difficult enough to navigate with a disability, we don’t need books telling us how difficult we are to love.
I genuinely believe Nicola Yoon was trying to portray a character who is not defined by her disability which I really do appreciate – we need more stories like that! However, it’s execution was not successful. I’d be interested to know how much research was done into disability whilst she was writing the book. Did she run this story past anyone with a disability first?
After seeing the trailer, it seems those ableist messages are even more prominent than the film. This is hardly surprising when you realise it was made by the same people who gave us ‘Me Before You’.
What are your thoughts on disability in ‘Everything Everything’? Have you seen the film? Let me know your thoughts in the comments!