‘Yeah, she liked it. She thought maybe it glossed over his disease a bit, but yeah, good.’
So said a friend about a friend of hers who’d already seen The Theory of Everything, the film about Stephen Hawking and his first marriage, when I told her I was going to see it at the weekend.
And you know what? I thought it was bloody good.
I think you’d be hard pressed not to like it, if Rom Coms are your thing (although, admittedly, there’s not that much Com). Eddie Redmayne is amazing as Hawking, Felicity Jones is perhaps even better as his wife, and well, it’s set in Cambridge, and when is Cambridge not beautiful? Certainly not when a huge budget has clearly been spent on giving it extra soft lighting and sparkle.
But the motor neurone disease needs that soft lighting and sparkle, right? To make it watchable?
Well, no, I don’t think it does, actually. And that’s exactly where the film triumphs.
If it glosses over the grim reality of the disease, and certainly my friend’s friend was not the only one to think it does, it glosses only over the physical side, not the psychological. Personally, I’m ok with that. I don’t want this post to become a debate about whether the primary purpose of showing more disability in books, films and the media in general is to ensure people with disabilities are sufficiently represented in those areas or to educate the wider population (although I’m happy to discuss this in the comments), but I do know that I don’t think the representation of physical pain/distress tells us much. What it’s important to show is the psychological damage that disability causes – the shame, the frustration, the anger – and without a doubt, The Theory of Everything doesn’t hold back here. It’s in the inability to match finger to thumb (I’ve been there), the inability to eat unassisted, the gradual triumph of the flight of stairs over the able-bodied man.
I don’t have motor neurone disease, or anything remotely that severe. I’ve never been told that my disability will cut my life short. I’m not in permanent, irreversible decline. But I do know what it’s like to watch your body let you down – for years mine steadily overcame its own issues – I was told I might not walk, and then I did, my limp became less pronounced, my left hand ceased to want to ball into a fist at all times – and then all of a sudden, it didn’t. I had hip pain, knee pain – neither of which I’d had before – and I was back in the MRI scanner for the first time in eighteen years. A day at a craft fair bizarrely threw my hips so out of sync I could barely walk. I had frequent neck ache, back ache and indigestion – caused, the physio said, by the fact that my rib cage was likely twisted because my right side was pulling too hard when compensating for my left. But I care less that people understand the physical issues than that they understand how I feel – why I’m scared, why I’m angry, why I’m ashamed. If I’d started life able-bodied? Yeah, I can’t even imagine…
But this isn’t the first thing I’ve watched about Stephen Hawking, and I’ve come to the conclusion that he’s not that nice a guy. Sure, the film is based on his wife’s autobiography, and he left her for his nurse, so she was never going to paint him as a saint, but it’s such a relief to finally see something that shows you that someone can be hellish in spite of their disability, and that the physical difficulties just exacerbate the problems of excess pride, stubbornness and selfishness. I’m so, so tired of seeing disabled people described as role models, ‘inspirational,’ or worst of all ‘cute’ (yes, Channel 4, I’m looking at you) – they’re *people*, and as such they come with a full range of emotions, hopes, dreams, fears and faults.
It’s why, in a way, I think erotica is an interesting genre in which to write disability. i’ve touched briefly before on my belief that the best erotica delves into the psychology of its characters and I think the psychology of disability is fascinating – how do you develop sex positivity, body positivity, healthy relationships, when living in an ableist world that does its best to remind you, often, that you’re not *normal?* Too much focus, at the moment, is put on disability as difference, when really, it’s not – it’s often just a magnifying glass on the physical insecurities that everyone suffers. As such, it deserves to be written not just for the sake of fair representation but because it highlights universal fears and concerns.
I have two concerns though, when it comes to writing disability, and the first is personal. I’m revising the first draft of my novel at the moment, and there’s no doubt the FMC is pretty much a carbon copy of me. I don’t regret that, because it’s important to me to see physical disability depicted in sex writing for all the reasons I’ve given above, and doubtless she’ll stay disabled right up the final draft, but ultimately I think as you mature as a writer you hope to move away from writing your own issues and insecurities, and I think this is an issue I’ll always be too close to to view it impartially. Nor do I think you have to have experienced disability to write it well. I have no issues with able-bodied people writing disability, provided they do their research properly, just as I hope that ‘cripping up’ (ugh) will never be widely seen as equivalent to ‘blacking up.’
My final concern, and my final point, for that matter, links back to disability as ‘cute.’ It’s not cute. It’s equally not sexy (which isn’t to say disabled people can’t be hot, just that that hotness is about the person, not their disability,) but judging by the way erotic romance is currently portraying mental health issues, you’d never know that. Take Sylvia Day’s Captivated by You as an example (and a longer post on this is coming soon.) The MMC (there’s no way I’m calling him the hero), Gideon Cross, has a history of being abused, and as such, some pretty severe MH problems. Can he be sexy nonetheless? Of course. Is he sexy because he’s ‘damaged?’ No, FFS.
Writing disability isn’t something that needs doing because it’s ‘cool.’ Physical disability and mental health issues aren’t having their fifteen minutes of fame, they’re the reality of the world we live in. We need to stop writing disability as a quirk that makes characters interesting and start writing interesting characters who also have a disability. And please, if you do, spare me the cute…