This month for Fantasy and Science Fiction Month, we’ve invited Asks about writing diverse fantasy and science fiction. Several questions focused on disability, so we’ve rounded them up in one post, answered by writer Marieke Nijkamp.
acrossthetracksrebounding said: I have a main character in a fantasy story who uses a prosthetic right arm powered by magic. Her supply of magic has varied over the years, so sometimes her right arm works just as well as her left and other times it doesn’t. My concern is that, if it’s a prosthetic that’s so analogous to a ‘normal’ arm, does it count as a disability?
There are two interesting things going on in this question. First of all, the use of the phrase “normal.” While here it’s obviously set apart with scare quotes, the dichotomy of disabled vs. normal is (pardon the pun) quite normal. And very clearly something to be aware of, because by juxtaposing disability with normality, it’s easy to set up disability as abnormal. (See also the medical model of disability, that sets up disabled people as broken, in need of being fixed or cured.) This has long since been society’s understanding of disability.
These days, the United Nations Convention on the Rights of Persons with Disabilities recognizes the social model of disability as being the prevailing paradigm. The social model differentiates between impairments (a medical condition that leads to disability) and disability (the result of the interaction between people living with impairments and, basically, the way the world’s set up). The social model of disability sees disability as:
“the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.
“A social model perspective does not deny the reality of impairment nor its impact on the individual. However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity.
”The social model seeks to change society in order to accommodate people living with impairment; it does not seek to change persons with impairment to accommodate society. It supports the view that people with disability have a right to be fully participating citizens on an equal basis with others.” (See: http://ift.tt/1O7DBbx)
Which brings me to the question: “does a [magical] prosthetic count as a disability?” That then depends on quite a few things. Does this prosthetic allow your character to navigate physical barriers in their world? Does it depend on her energy and how does it depend on her energy? Would that be akin to a chronic illness maybe? What is society’s attitude toward her? Is her society systematically and inherently ableist, like ours is? How would she personally identify? What fits best with the way she looks at and understand the world?
And on that note, did you research or talk to people about living with prosthetics? Because representation matters, and even representation of magical prostheses can have repercussions in the real world.
gnomer-denois said: I am writing a fantasy novel and one of the secondary characters I have is a veteran from a war about 20 years prior where she was a surgeon, mostly just sewing people up because of her tailoring/embroidery skills and now she’s working as a tailor again, pretty high end. I was considering that she might have lost a limb in the war, and I lean toward her non-dominant hand. Still a set back for a tailor. There is magic in this world that might aid a prosthetic to be more like current ones. But I’m still not sure if this would be an unrealistic portrayal of an amputee’s ability because I don’t want magic to just fix the disability like it isn’t there, but more allow a prosthetic to receive some input from the skin interface and have some return of mobility for grasping, etc. Or if there is a more accurate way to show how someone missing a hand/lower arm would be able to sew, etc. If I can’t figure out how to do it realistically, I may change the disability, but I wanted to try.
Let’s divvy this up in a few steps too, because that’s a lot of information to process.
First of all, I think it’s important to make clear what “fixing” disability means and what it doesn’t mean. The dreaded magical cure or fixing disability usually presents itself by way of erasing the disability. Either through magic as a complete solution or by retconning the disability entirely. This often includes both the impairment, to use the terms above, and the way the disabled person interacts with the world. For example, a girl who has limped the entire book gets magically healed by the end of it is suddenly who she was always meant to be: whole, normal, and seen like that by everyone else. (And despite having learned to compensate for her limp, becoming suddenly non-disabled does not cause her to relearn to walk. After all: she is now “whole” and “normal.”) Her disability, and everything around it, gets completely erased.
This is very much informed by the medical model mentioned above, by the way, which claims that disabled people are broken and need to be fixed. Only then can they have a happily ever after. (This also happens the other way around — the “healing” happens in the interactions with the world because the character becomes more “likable” and as a result of that, they are healed.)
Hopefully you get why both of these options are super problematic — not to mention ignorant of the fact that for a lot of us, disability is an important part of our identity, exactly because it shapes the way we interact with the world. It actively informs us and that isn’t something you can easily erase.
Now assistive/adaptive technology (prosthetics, orthotics, and assistive devices), on the other hand, does no such thing. They make living with disability and interacting with the world easier, but they do not erase the disability completely. Using assistive technology is about accessibility. It’s about independence. As someone who uses canes and braces, in my experience it can even be about pride. (The flip side of it is that is doesn’t always change attitudinal barriers — and can even increase those.)
So whether or not this is about magically fixing disability depends on a lot of nuances. And those questions mentioned in the previous answer come into play here again. (On that note, let me also point out that I am no amputee and I have never used prosthetics, so please do be mindful of your research.)
Now, as for the second part of the question: how would someone be able to sew one-handed? By pinning material to a pad. By using a sewing bird — a table clamp that pins fabric to a table. By using a sewing brick or other weights. By using different needles, perhaps. In any case by adapting her process. By adapting to the situation. In a way, these are assistive devices too, after all.
thefrostbackbasin said: One of my main characters is disabled due to traumatic injury to the spine but my sci-fi story takes place in the far future so I’m concerned how developed the medical community should be in terms of ‘fixing’ disability
About a year ago, I was asked to be part of a panel called “We can rebuild you: disability in science fiction” about precisely this question. Considering we spent a good hour talking about it, I can tell you now there’s no easy answer — and a lot of it is up to the world you build.
There are a lot of variables in this equation. The most important one we’ve already discussed — the way society views disability. There’s a lot you can extrapolate from that in terms of how developed the medical community should or shouldn’t be. (And ask yourself: is the medical community as developed as it “should” be now? Under what paradigm? Should by whose measurement?)
The second point to consider has less to do with development and far more with accessibility. Even if the medical community is as developed to immediately fix traumatic spine injury … is that development accessible to all? What are the costs? The conditions?
And also — what are the costs to hospitals? Or to pharmaceutical companies? Is “fixing” all disabilities cost-efficient? There are plenty of medicines that exist in theory, could be produced, and could improve quality of life. If only their target audience wasn’t so small. Ask yourself how politicized the medical community in your world is and what the ethical discussions are about.
And if a solution is available: what are the physical costs? What kind of technology is used? What effects does that have on the body? How lasting is this solution? Is it a solution that’s surgical or based on medication? If the latter, what is society’s perspective of that? Because I can tell you from experience that even something as deceptively simple as taking daily pain medication is frowned upon by people who do not live with chronic pain.
Or look at it from a different perspective: if the medical community has evolved to a point where spinal injury cures are as common place as flu jabs, what does that mean for the overall development and society’s perspective of human health? Is life extension or enhancement normal? And if so, what effects does that have on the way injuries are perceived? The way disability in general is perceived?
In the end, there are a hundred different ways in which to portray disability in the future. There are a hundred different reasons why the medical community will have developed well enough and a hundred different reasons why they won’t have yet. In the end though, it’s your story. So go for what works best for you, your character, and their society. Just be mindful that it is and remains respectful or real lived experiences, whatever you do.
Marieke Nijkamp is a storyteller, dreamer, globe-trotter, geek. She holds degrees in philosophy, history, and medieval studies, and wants to grow up to be a time traveler. Her debut young adult novel This Is Where It Ends will be published by Sourcebooks Fire on January 5, 2016.