All The Things I Don’t Know: Writing About Disability

NOTE: if you’ve managed to avoid finding out what happens in “Me Before You” and want to maintain this state, this article, and ones it links to contains spoilers.

Recently, two unconnected events came together in my head, and made me do some hard thinking. First, I signed off the proofs of my forthcoming novel, “Lily’s House” (Legend Press, October 2016). And second, I read this savagely brilliant article by Kim Sauder for HuffPost Women – critiquing the recent film adaptation of Jojo Moyes’ novel “Me Before You”, and its representation of the experience of disability. They’re connected for me because the protagonist of “Lily’s House”, Jen, has a disability – she is profoundly deaf – while I do not.

It goes without saying that all of us who write fiction have to write about stuff we don’t personally know about. But how does this work when a disabled character is written by a non-disabled writer? Is this okay? Or is it the authorial equivalent of what Sauder refers to as “cripping up”? I hope it’s okay; I hope I’ve done a decent job. But I don’t know.

I shared the article with a Facebook group for writers and bloggers. We had a great discussion. We talked about whether it was okay for Jojo Moyes to write the story she did. (Group consensus: hell yes. Writers should be free to write whatever they want.) Whether Sauder was right about how poorly disabilities of all kinds are represented. (Group consensus: again, hell yes. We all struggled to find examples of well-rounded characters with disabilities. Weirdly, the best example I’ve managed to come up with of a disabled character who’s just, you know, someone living their life like everyone else, is Billy Black from Twilight.)

We talked a lot, about a lot of things. Group members with experience of disability shared their irritation when a book featuring a disabled character shoots suddenly wildly to prominence, becoming the ur-text that singularly defines what it means to live with that condition. Was it okay for Mark Haddon to write The Curious Incident of the Dog in the Night-time? See above. Is it, nonetheless, really frickin’ annoying when people hear that you / your sibling / your child has Asperger’s syndrome, and their eyes light up and they say, Oh, like that boy Christopher in…? Once more, with feeling; hell yes.

Some writers shared their experiences of trying to find a publisher for their books that foregrounded disabled characters. One writer had her book rejected because – as publishers had absolutely no problem telling her – “people don’t want to read about that sort of thing”. Just like that – people don’t want to read about that sort of thing. No attempt to disguise it. It’s such a vile, hideous remark, so utterly saturated in unapologetic prejudice, it’s almost funny. Almost.

Has the runaway success of Me Before You come about because as a culture, have a preference for narratives that represent disabled people as tragic heroes? Good question. We didn’t know the answer. Do stories that just show disability as part of normal life even get written? Do they get written but not published? Published but not read? And where are the disabled writers? We don’t know. We don’t know. We don’t know.

Here’s what I hope is true; I hope that I’ve done a decent job of creating the heroine of “Lily’s House” as a believable, well-rounded character. I hope that the research I’ve done, the conversations I’ve had, the time I’ve spent trying to get under her skin, is enough. I wanted to write a story where Jen’s disability is just a part of her, not something she spends time thinking about or coming to terms with. I hope that’s okay. But I don’t know. I don’t know. I don’t know.

A few months from now, I guess I’ll find out.


This post is brought to you by Cassandra Parkin.



3 thoughts on “All The Things I Don’t Know: Writing About Disability

  1. Really interesting post Cassandra with a lot to think about. I’m shocked but sadly not surprised about publishers reactions. Although the Disability Discrimination Act doesn’t do nearly enough, I’m pretty sure it applies to publishers too as service providers. I shall look forward to reading Lily’s House when it comes out.


  2. I’d like a mirror into the future, say the year 2100 and a comparison of texts with disabled characters from each decade, to see how attitudes develop (I’m assuming they’ll develop and not deteriorate but who knows?) A thought provoking post, thank you.


  3. Great post Cassandra… evokes many issues to think about.

    I completely agree writers should be free to write about any situation or aspect of characterisation they wish to, including disability; ideally they will research any ‘unknown’ element thoroughly & apply it with sensitivity & authenticity – like it sounds you have with Jen.

    Readers (experienced with disability or not) will be the ultimate judges as to how well they have executed the story – providing of course ALL the gatekeepers (agents, publishers etc) stop underestimating and misjudging what people want to read and more fiction featuring disabled characters becomes readily available and indeed the fact they do the norm, not the novelty.


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