This blog is mostly meant to reflect on how those with actual disabilities are finding their place in media. There are thousands of cases of abled bodied actors playing characters with disabilities for better or worse, and frankly just having a disabled character in a story [without her being played by a disabled performer] doesn’t interest me as it has been done to death. But every once in a while I find I must make an exception.
Last night I popped on John Green’s The Fault in Our Stars a story which, despite all of its flaws, has somehow managed to stick with me unlike most of the other ‘ailing and disabled children’ narratives that have found their rather odd place in literature. One reason why this occurs is due to the utterly cool and quirky character of Hazel, the story’s oxygen dependent narrator who has the ability to see her condition as realistically as one would declare the colour of the sky.
But what holds my attention throughout Hazel’s story is not, as one would expect, the relationship between herself and Augustus Waters as star crossed lovers, but rather the relationship between her and her parents.
The Narrative of the difficulties of raising a special needs child is one that remains relatively unexplored in our literature. It is, I believe, a rather untapped metaphor of parenting: the parent willing to do anything for their child to be a happy and ‘normal’ life, be it a bone marrow transplant or fighting a school system for their child to be admitted into ‘normal’ education. This is a side of disability we don’t see much and once again: we need to.
Hazel’s is obsessed with what is going to happen to her parents after she dies, an normal obsession for special needs kids who know that their parents have reshaped their lives in order to make sure they are happy. But for Hazel the obsession goes past herself, she looks for answers in the literature she reads, the relationships she pursues, and the items she thinks about.
This is what I love about The Fault in Our Stars, the story doesn’t focus on Hazel’s special life, or star crossed lovers destined to be torn apart by a horrible illness. It is about how you find your place in the world between life and death, love and protection, saving your precious energy and spending it one what is worth the effort. That isn’t what life with an illness is like, that’s what life is like regardless of who you are.