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About the author
Mark Lawrence is married with four children, one of whom is severely disabled. His day job is as a research scientist focused on various rather intractable problems in the field of artificial intelligence. He has held secret level clearance with both US and UK governments. At one point he was qualified to say ’this isn’t rocket science … oh wait, it actually is’.
(warning, contains A Song of Ice and Fire spoilers, Soldier Son trilogy spoilers, and traces of nuts)
I’m writing this piece because Sarah asked me to on the strength of a tweet about Elspeth Cooper’s guest blog [link]. I’m not sure how I established my credentials in less than 140 characters but Sarah’s hard to say no to, so I took the easy path and said yes.
Historically, there has been a tendency across many cultures and religions to view disability (and illness/misfortune in general) as something visited upon those who deserve it. Although these modes of thought have no root in the core religious texts of either Christianity or Islam, and whilst there may be debate as to their prevalence, they have certainly impacted our literature. The primal cause may be a biological revulsion for the imperfect in case ‘it’s catching’ – a reaction that might have some evolutionary benefit, however unenlightened.
In any event, time and again those with physical impairments are depicted as the ‘baddies’ in our cultural heritage. From Shakespeare’s Richard III, hunch-backed and ‘rudely stamped’ by God, to James Bond’s wheelchair-bound nemesis, Blofeld. Think of Captain Hook and Darth Vader (a multiple amputee) – Tinkerbelle and Peter Pan would never have been offered to us as heroes lacking extremities.
The portrayal of disability is of course not entirely one-sided and somewhere between Dickens’ Smike and 60’s TV series Ironside the disabled wrestled themselves into the occasional heroic role.
But we’re grown now, surely, and those days of prejudice are behind us? Maybe. It’s hard to find a disabled superhero to point at. I mean a superman with one leg … he’d still be pretty awesome, right? Since he can fly he doesn’t actually need legs at all unless he wants to kick someone. In fact the only famous examples I can think of are ones where the superpowers somehow make the disability just part of the character colour because their new abilities overcompensate. Dare Devil is blind… but he can pretty much see really. Professor X is in a wheelchair (and bald with it!) but he can stop time, make you see what he wants you to, and basically do pretty much anything. In fact he could probably float out of his chair and grow dreadlocks should he so desire.
Fantasy fiction then? That great experimental sandbox and domain of the open-minded. Well, here I have to plead ignorance in the main. I’m not that widely read in the genre. But I can cite a few popular examples where talented writers have tackled the business of a healthy person becoming disabled, through injury or illness.
First we have George Martin in the series starting with A Game of Thrones. Bran is paralysed from the waist down almost as soon as we meet him. It’s a bold move to disable a child as your opening gambit and we see a decent portrayal of the psychological consequences, the necessary readjustments of expectations, even the partial compensation of the effects through use of suitable equipment (modified saddle). It’s a portrayal that shies away from the messier side of such a disability, but in the context of the story being told we can perhaps forgive the sweeping under the carpet of incontinence and the reliance on other people to wipe backsides. Secondly from GRRM, and perhaps more boldly, we see someone not only extremely physically capable but also deeply unpleasant become disabled. Jamie Lannister has his hand amputated. Suddenly he is no longer the foremost swordsman of the realm, no longer even a decent swordsman, in fact no longer capable of buttoning his shirt, and his sister stops finding him sexually attractive (generally a good thing, but in this context a symptom of the revulsion physical impairment can engender in some people).
Hobb’s protagonist in Soldier Son styles himself an athletic warrior just waiting for his chance at glory. Magical intervention renders him morbidly obese and this alone reforms his society’s opinion about him, including those of his parents and fiancé.
These are examples of skilled writers taking the trouble to look into aspects of disability and allowing the reader new insights. But I doubt that either Martin or Hobb were doing this out of some dutiful sense of obligation. They weren’t ticking boxes in a representational chart to ensure all minorities had a fair crack of the quill. I rather suspect both were following their story, and lifted by the slow but rising tide of general enlightenment in these areas, in combination no doubt with their own varied experiences, they had realised the potential for adding interest and depth to their work by such inclusion.
My own experience is of a different flavour and two-fold. The first instance is of the slow and creeping debilitation that multiple sclerosis brings. My wife, who I’ve been with for very nearly quarter of a century now, first showed signs of the condition in her early twenties, though we only recognised that when casting hindsight back across a decade or two. It’s not the sudden devastation of Bran’s fall or Jamie’s amputation. There’s nobody to blame, no personification of the guilt, nobody did it to her. It’s an erosion, an additional vulnerability, as if somehow she’s aging faster than I am. She was always the keen cyclist, but now it’s me that cycles ten miles a day to and from work, and she has to use a wheelchair to leave the house. It’s disease, not contagious but mysterious, poorly understood. There’s no romance to it, its effects are invisible and the heights of our technology are required to just see the tiny signs of damage, and yet it devastates. Weakness is the least of it. Pain is what it gives. And pain, day in and out, grinds a person down.
The second instance was that of my daughter, and that really was as sudden as a sword blow or a fall. Almost everything was taken from my youngest daughter just minutes before her first chance to see the world. It’s a dangerous business, this being born. Some babies aren’t put together quite right. Others, like Celyn, are damaged at birth. A lack of oxygen saw her come out grey and limp with a wedge of her brain – the motor cortex mostly – dying as I laid eyes on her. And still more babies emerge in apparent health only to be dragged down by some rare and vicious syndrome as they try to grow.
Celyn’s is eight now. She can’t move any part of her body in a useful way, she can’t roll, lift an arm, sit, use her fingers. She can’t speak, her eyesight is very poor, she’s doubly incontinent, and often in pain. She sleeps for two hours at most before requiring turning, resettling, maybe drugging. All her liquids are fed to her through a tube that goes through her abdomen directly into her stomach. But it seems that her intelligence is intact. She understands what is said to her, she got 9 out of 10 last week in her maths test on the times tables, she attends a regular school with able-bodied children and her teacher says she is one of the quickest to understand new things. She laughs. A lot. She loves stories, writes stories (with the help of a head switch, a computer listing choices, and an assistant), loves taking part, hates being left out.
This is a whole different kind of disability. The disability of forever. It’s all she has ever known. Her understanding of what has been denied to her is coming to her slowly, piece by piece. She hasn’t lost the ability to walk, to hold things, to speak, she’s never had them. It breaks my heart knowing what she can’t have, but it doesn’t break hers. Some people might say (and have in fact said – to my wife in a radio phone-in) they would rather be dead than be like that, that drowning such children at birth would be a kindness both to the child and to the tax payer. But Celyn loves her life. She has ambitions. She’s an eight year old girl who loves pink, loves princesses, wants her hair done . . . I don’t know where all this will lead us – the doctors doubt it will lead us past 18 – but she deserves her chances and what happiness she can snatch. As do we all.
This disability from birth, especially profound disability, is something I’ve not seen addressed in fantasy. It isn’t something I demand to see represented. I don’t see writing as something subject to demands. It is however something I’m interested to see. The perspective of someone who has never tasted the full array of physical opportunities is unique and hard for an outsider to penetrate. There are insights offered by such privation, insights into what we are, into what makes us people, what we share at the core. That’s the reason I’d like to see such a character in a story. Not to fill a quota, not out of duty, but because it could be fascinating.
I’ve started two books with significant characters who have been profoundly disabled since birth. In one, ‘The Arithmetic of Magpies’, the character is a young woman with severe cerebral palsy (my daughter’s condition) at the heart of a high-tech hacking operation, prized for her particular skills, who finds herself being hunted by Orion – the avatar of the mythological figure – and plunged into a very strange conflict. All largely without stirring from the spot.
In the other, ‘Gunlaw’, a young boy with similar disabilities is strapped to a board in a ‘cripple-shack’ in a pseudo Wild West milieu. In this case rather than technology it is psychic ability that offers additional possibilities to the character, but in both cases I am careful to ensure that the technology or power in no way reduces the disability to a minor inconvenience – the new capability is tangential to the disability, it doesn’t compensate but it offers additional avenues for input to the story. Moreover, I’m trying to make the characters interesting in their own right. A disabled character doesn’t have to be good, or nice, or well intentioned. They can be as wonderful or crappy as the rest of us. The disability isn’t their defining feature – it’s the thing between their defining features and us. It may shape and colour what they have to offer, but ultimately the task of the story is to see past it to the person.
And the final thing I’d like to see in fantasy, just because it’s part of life – at least part of mine – is the carer’s point of view. It’s a unique position. Compared to Joe Public the carer has a raw deal. Their time is taken, their ambitions curbed. I spend almost all my time working or caring for my daughter. I’ve not had a holiday, day off, lie in, etc for eight years. I don’t have time to maintain friendships, raise my other children with the input they need and deserve . . . it’s pretty shit all in all. Compared to the person the carer is supporting their life is often a bed of roses. I can see, talk, run, jump. I’m not in pain. I had thirty plus years of freedom and fun, holidays, lie ins, time wasted doing nothing. It was great. I should shut the fuck up.
There it is in a nutshell. The carer has it much worse than most around them but much better than the person who is really suffering. They’re denied the luxury of complaint. It’s survivor guilt. I feel small for mentioning it here after listing Celyn’s challenges. But it’s a thing. It’s real, and it’s just another dimension of the matter.
My final point is that more than foresight or social conscience or good intentions, it takes skill to bring this subject to the page. There is an exceedingly fine balance to be struck when showing the reader the world through the eyes of a disabled person. Mention the hard facts of their impairment too often and it becomes deeply irritating very quickly. Enough with the leg/arm/missing hand already! Fail to mention the problems enough and you risk sweeping the constant and intrusive core of them away for convenience – because that’s at the heart of disability; it won’t quit, won’t be pushed aside, won’t stay quiet when it’s important. It just won’t.
All of this is part of life, which is why it offers potential for fascinating literature. Throw in some swords, a suit of armour, a dragon, a spell gone wrong . . . and stir until done. Perhaps someone with serious life-long disability can use (or has already used) that particular and peculiar ability of the fantasy genre to make their experience more real and accessible to those of us on the outside. Show us some broken heroes. Only do it well. Do it right.
You can find Mark online here:
You can read more about his books on his webpage, or on Goodreads (or numerous other sources, I’m sure. Mark is one VERY talked about author).
..I’m writing this piece because Sarah asked me to on the strength of a tweet about Elspeth Cooper’s guest blog I’m not sure how I established my credentials in less than 140 characters but Sarah’s hard to say no to, so I took the easy path and said yes.<<
Sarah is hard to say no to…and she can spot quality. 😉
Just as amazing the second time around. And the perspective of the care-giver is one I find fascinating as well.
Orlando Gardiner, in Tad Williams’ Otherland opus, is another example of a character who suffers from a progressive, degenerative disease. In his case he escapes from it online, but finds that his condition also inhibits his abilities there. Williams makes sure to show how the condition affects Orlando’s parents too, and does so plainly and sympathetically.
I was born with a disability of some sort myself… My legs were bent inwards (If they hadn’t fixed me, I’d be in a wheelchair for the rest of my life) and I was in extreme pain as a baby, they operated on me and managed to fix my right leg but the doctor in charge idiotically wanted to have a second go at my legs and my mom told him to try working on my left first and he mucked it up. I’ve dislocated my knee several times because of this and I’d grow tired and need my cousins or friends to carry me around when I was younger. I’m fine now and I work out on a daily basis, I can run, I can walk. I have no right to complain; there’re people out there who’re off way worse than I am or was. In truth, my mother suffered far more than I did/ my carer.
She was always obssesing about my leg and still does to this day, she flew around the world; from Germany to Denmark, to the UK. Going to several different doctors and burning up a whole lot of money. My dad told me that she used to sit in our bathroom and cry for ours. Yet… I was always happy, I never knew anything other than my “disability”, it was normal to me because I’d never truly experienced anything different, I was a happy kid and I’m happy now. My carer suffered far more than me and I’d like to see that in a story someday; might write one myself xD.
I don’t know whether to agree whole heatedly or be annoyed that mark’s wife has never offered me any of the home brew 😉
Seriously though, this is an excellent piece. carers have a bizarre lot: they are portrayed as both angel and scrounger; exhausted by a life they did not choose yet unwilling to give up on loved ones nor able to resurrect what was possibly a satisfying career.
Yes, we are missing from fiction, fantasy and popular culture generally: Billy Mitchell in Eastenders headed that way- then split from his wife, at which point all mention of disability ceased. We all know how distanced from the truth that is! I suspect though that we are missing because at some subconscious level e inspire a nervousness: you can eat the good food, keep yourself fit, earn a huge wage- but you can’t protect yourself from seeing your loved ones become in need of care. Humanity cannot cope with that lack of control.
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