Discussion: Tips for Research & Respectful Writing

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Last week’s discussion on inspiration porn garnered some great responses, and we’re so excited to be sharing today’s discussion. We asked our contributors if they had any brief thoughts to share on the following topic:

Do you have any tips for authors about for researching and respectfully writing disabled characters?


Kayla Whaley:
I fully believe that respectfully writing a character with a disability requires a solid research foundation. First, and most obviously, know what your character’s disability is. Read up on the causes, symptoms, prognoses, but DO NOT take anything you read wholesale. Most disabilities vary WIDELY. For instance, with my disease, I stopped walking at six. Others I know stopped at 14 or 15, while some never walked at all. Some use manual chairs, while I’ve never had the strength for one. I can still sit up, hold my head up, eat on my own, while others can’t. There’s so much variation from person to person. So, yes, know the medical realities of the disability, but know they aren’t all realities for every person.

Research absolutely needs to go beyond that, though. Talk to people with either the same or similar disabilities. Your character won’t feel real if you just talk about how, for example, SMA is caused by a mutation on the SMN1 gene (I actually had to look that up – I had no idea which gene mutation caused my disease). Show the reader how she’d always rather drive uphill than downhill because gravity makes it harder to sit upright going downhill. Or how sometimes her left pinky toe goes numb from sitting cross-legged all day (her preferred position though her doctors hate it). Or how in eleventh grade the elevator broke and she spent all day in her Latin classroom hearing the same lecture over and over, but it was totally awesome because NO MATH. It’s all in the details of the experience, not the science. (You know, in my experience. See what I did there?)

Of course, to write a character with a disability respectfully, don’t focus only on the disability. Don’t even primarily focus on it. Focus on the character. Write them the same way you’d write any other character. Get to know them: their wants, needs, motivations, fears, faults, likes, dislikes, hobbies, etc. Whatever you normally know about your characters without disabilities, know those things about those with disabilities too. Above all, write them as full, complete human beings.


Kody Keplinger:
I feel like the most important thing is to talk to a person (or many persons) with the disability you’re writing about. Too many authors do research just to find ways to make the disability fit the story they are trying to tell as opposed to truly researching the disability as a whole. Look at many different avenues – for instance, if you’re researching blindness, look at many different causes. But most importantly, talk to real people.

And when you talk to them, don’t just ask them things like “How do you do X, Y, and Z?” Also ask things like, “What things should I avoid writing about to make this real? Or there any stereotypes I should steer clear of?” chances are they’ll have a ton to tell you about, but you might not get that information with a basic line of “How to” questioning.


Holly Scott-Gardner:
It’s hard to get a disabled character right, simply because no two people with a disability are the same. Some of us are confident, some like studying, think watching sport is awesome, but as with any group in society that isn’t the case for all of us. We have different personalities, our likes and dislikes differ and even the way we respond to our disability varies.

I’m going to focus on visual impairment here as I can relate to it personally. Some blind people use a cane, some a guide dog, many use both. Most people who are classed as legally blind have some useful vision, I am a Braille user but other blind people read large print. I’m trying to highlight here that you can’t just decide to write a visually impaired character and go for it, you must do your research. Google is great and you can find out a lot of information about assistive technology, programs specifically for the blind and tools we use in the classroom. But the only way to really know what it’s like to be blind is to talk to a blind person. I’d recommend if you’re writing a character with a disability to talk to a number of people who have that disability. As I said we don’t all do things quite the same way and so from talking to a range of people with that disability you’ll get a more accurate idea of the way you’re character might behave.

Don’t be scared to approach us, 99% of us would be relieved to know that an author is doing research and more than that they are actually reaching out to people with that disability so that they can write an accurate portrayal of it. So often I see badly written books where the blind character is helpless, or uses technology that is outdated or even doesn’t exist! Knowing that an author wants to put the effort into researching blindness and writing the best portrayal they can is extremely encouraging.


s.e. smith:
Research is one of my favourite things in the whole world, as both a journalist and a writer of fiction. I love outlining, pulling together a story, and then delving into the facts behind it—with fiction, there’s always the added tension of seeing if my characters and world are sustainable, believable, and immersive, whether I’m writing about cyborgs in space or demonically possessed watermelons. When it comes to depicting real actual human experiences, research is so critical, both to make stories better, and to make them authentic; people want to see themselves in fiction, and as an author, you have a responsibility to depict minority groups with care, because your readers will take away messages about them from your text.

And my advice is: get ready to absorb a lot of information. There are tons of disability blogs out there as well as memoirs, which gives you a great chance to get a broad perspective on different disabled lives and different experiences with the same disability. Disabled artists and creators make comics, films, and other creative works that are another great informational tool. Identify a couple of people with the disability you’re writing about and approach them, politely, to ask if they’d be willing to work with you as research partners. Offer to compensate them for their time. Do your research ahead of time so you can ask them appropriate and useful questions, and treat them respectfully. If they’re willing to read drafts of your work, take advantage of that opportunity, because as they see the whole work come together, they can identify issues that may arise, or point out things you haven’t thought about (why did your autistic character cover her ears while riding the train because the noise was too loud, but seem totally fine with the noise of a jet engine?).

Nisi Shawl’s fantastic transracial writing for the sincere is a recommended read for anyone writing minority characters, because what she has to say applies not just to transracial writing but also to writing about disabled characters, queer characters, and people from minority groups. Shawl’s Writing the Other is another fantastic text to use; yes, you need to research how to research! (Sorry.) If you don’t share the experiences of your characters, you need to research them, rather than assuming that the lessons of pop culture and assumptions of society have prepared you. Ultimately, don’t be afraid to fail; the question isn’t whether you will fail, but whether you will learn from your mistakes.


Sarah Bromley:
Of course you want to maintain respect for people living with whatever condition you are researching for writing fiction. I find personal interviews to be a better source for research because it allows the interviewer to go deeper with the questions than just mining the internet for articles, but personal interviews also demand a high level of respect. If you have someone close to you with that condition, you can approach that person and tell him/her you want to write about it. Most people are willing to talk about their conditions and make sure you are accurate in your description of the condition.

And that’s the thing here. Accuracy versus exploitation. No one wants to feel like they shared information and it was used to exploit their condition. So assure anyone that you’re interviewing that you won’t be sensationalizing what they share with you, that you’ll be giving an honest look at what it’s like to have that particular condition.


Corinne Duyvis:
Aside from all the great advice above, one thing I want to urge people to do is ask themselves this: What do I know about this disability? Where does this knowledge come from? Most of the time, the answer is “pop culture.” Too many people will write what they think is a certain disability with bits of info scrounged together from various books and movies. Scratch everything you think you know and research from scratch. Turn this research into a project: don’t treat it as an hour-long Google/Wikipedia search or a quick interview, but immerse yourself for weeks or months on end in articles, blogs, and discussions–about everything from real-life annoyances to iffy media portrayals. Become acquainted with disability tropes and clichés and figure out exactly why they’re so bothersome.

Particularly, when you write a disability, don’t look at a list of symptoms and and wonder, “OK, now if I were in this situation…?” because disability is more complex than that. You must research beyond the objective physical aspects. People become used to disability over the years and find ways to adapt; don’t get so hung up in a character’s limitations that it dominates their entire being. For a number of people, disability is legitimately terrible. For others, it’s an annoyance along the lines of wearing glasses. Others equate it to not owning a car, which has both downsides and upsides.

Whichever route you go, make sure the character’s personality traits, habits, and plotlines are influenced rather than defined by disability.


Disabled readers, anything to add? Authors, will this change how you approach your disabled characters, or did any of this raise further questions?

We’d be delighted to hear from you in the comments!



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7 Comments

  1. The point I’d make is that disability is more than my impairment. That’s actually one of the major tenets for many disabled people. The Medical Model of Disability, the concept of disability espoused by the medics and understood by the majority of non-disabled people says that we’re broken and need to be fixed, but the Social Model of Disability, the one we prefer, says that ‘disability’ is the discrimination we experience as the result of society’s refusal to adapt to our impairments. That discrimination can be the failure to provide a ramp into a building (all too often true even of new buildings!), providing only a paper application form to someone unable to write (I can type fine, I can’t scrawl much more than a sentence before my hand gives out), condescension (‘does he take sugar’), hostility (most non-disabled people seem to be in denial about how hostile society is to disability, I’m into double figures with verbal assaults, usually by groups and by no means limited to kids or youths, and I’ve had one physical assault – he came off worst 🙂 disabled does not mean incapable), being a convenient political whipping boy (right wing politicians have been quick to describe us as ‘fakes’ and ‘frauds’ and ‘skivers’ these last few years), outright discrimination in work (BTDT, don’t have a career anymore), and then there’s the subtle effects, for instance I can’t usually tell if I can do something until immediately before because of the massive variability of my impairment, so if someone wants to go out and I keep having to wave off at the last moment, then that doesn’t mean I’m being awkward, it’s another facet of my impairment you need to adjust to if you’re really going to treat me as an equal. Life isn’t all discrimination, no more than life is all discrimination for any other minority, but it’s a significant and common enough part of disabled life you do need to be aware of it.

    Equally there are positive aspects to disability, far more than society willingly admits. I’m a far more rounded person as a result of my disability (I became noticeably disabled in my late 20s), I’ve met – online – a lot of other disabled people who share my experiences, offer a sounding board for ideas, a source for information and somewhere to vent when the world or the pain gets too much. Why would I want to give that up? Society’s idea of the ‘positive’ side of disability is probably summed up in the Paralympics and how ‘inspirational’ we are. We call it inspiration-porn. A Paralympian isn’t ‘special’ because they’re disabled, they’re special because they’re an elite athlete willing to put in exactly the same amount of work as any other elite athlete. Similarly for any other achievement, if it wouldn’t be notable for a non-disabled person, it probably isn’t notable for a disabled person. A quick way to check yourself is to consider whether you could say the same thing about a black or gay person without being patronising or insulting.

    Not every disabled person is politically active, or even necessarily aware that disability is an identity, not every disabled person faces open hostility, not every disabled person interacts regularly with other disabled people, but there are cultural aspects to being a disabled person, and you probably should consider them. Equally there are strong disability sub-cultures, Deaf culture is probably the best known, but you’ll find others such as the spoonies and the bendies – I’m not making these up, I identify as both, spoonies take their name from the Spoon Theory, which is a metaphor for having to dole out strictly limited physical resources to get through the day, bendies are people with connective tissue disorders leading to hypermobile joints. A particular strong sub-culture that’s appeared over the last few years is the neuro-diversity movement, people with Autism Spectrum Disorders and other developmental disabilities who actively reject the notion there is something wrong with themselves and believe that the idea of ‘normal’ needs to be redefined to include them.

    Disability is complex, it’s not what you see from the outside, and it’s more than just our ‘disabilities’.

  2. This did raise a question for me regarding people who were born with no sight at all. I’m writing a fantasy and just figured out one of my characters is blind. Without the aid of computers and typewriters, is it possible for my character (assuming she’s of the status to be educated) to be able to write legibly? How can I go about making her experience believable?

    Thank you for your help, and my sincere apologies if this is not an appropriate place to ask these questions.

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  6. I think it is really important to always understand that there is an alternative perspective and deeper that you can go. I started researching for a story about a character with multiple disabilities I don’t personally have and tier one of very basic google research, you know, all you get is the perspective of doctors and caretakers and the medical model. I think that’s where a lot of people stop, very unfortunately. But I knew from my own experience as a disabled person how important it was to find the perspective of the actual people with the disability.

    It took a while, honestly, to find good, substantial writing about it, that wasn’t just a little inspirational memoir piece on a blog still run by doctors. But that’s still only tier two, because most of that was still people with the disability but who were coming at it from a recovery model, a very strict rehabilitation and medical model. I knew there had to be people with this disability who thought differently. I wanted to find them.

    Honestly, it took me over a month of deep google searches and all kinds of different wording and research, but I finally found a sizable community of people with this disability who were looking at it from a critical disability studies and a disability pride perspective. It is an entirely different ball game then. That was the perspective that you never see anyone else giving because people don’t know it is there. You’re not going to find it just by typing basic things into a search bar.

    But all three pieces are equally important because you need the entire picture of how the disability is understood in its whole social context. If you don’t know how the disability is understood through pathology then you won’t have a good understanding of what it is that others might be resisting. I saw just how stringent the recovery culture around this particular disability was, so I understood better the sheer place of frustration those perspectives I found at the end were coming from.

    Yet, a lot of people just stop at that first level or that second level, they don’t understand that there is always something to question, always another point of view. I think people generally don’t understand to try to find it because they don’t know it exists. The messages they get from society say otherwise, so their research suffers for it from the start. If you don’t know what you’re looking for, you’re not going to find it.

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