By Sebastian Jack
Hi! My name is Sebastian Jack, I’m a bilateral, above-knee amputee, and I use a wheelchair full-time. 15% of the world’s population (one billion people!) live with some form of disability. One fifth of them (between 110 – 190 million people) experience significant or profound disability. So, why don’t 15% of our fictional characters have disabilities? If you’re interested in writing complex, nuanced, disabled characters, here are some tips to get you started in the right direction!
First things first: What is your character’s disability, and how did they acquire it?
Do they have an amputation? If so, what limbs(s)? Above- or below-knee? Do they have a shoulder joint? An elbow? A wrist? Remember that with every major joint a person loses, mobility becomes much more limited, and current prosthetics become less and less effective. As it stands, things like mind-controlled robot hands do exist, but they’re exceedingly rare, and prohibitively expensive without the right insurance.
Do they have a spinal cord injury, or other neurological condition? Hemi-, para-, or quadriplegic? What parts of their body can they feel, and what parts of their body can they move? Remember that those can be two vastly different lists, or very similar lists. The general rule of thumb is that the higher on the spinal cord a person is injured, the less sensation and mobility they will have. But no two people are alike, and there are outliers! The human body is weird like that.
It Gets Madder and Madder and Hotter and Hotter
Speak for Yourself…Speak. For. Yourself.
#Own Voices – What It Means to Us
Or, perhaps your character lives with something less immediately visible, like Epilepsy or a traumatic brain injury. Are they visually impaired? Is their vision completely blacked out, or do they have some eyesight? Do they see through a pinhole, or is there are black spot in the center? Are they Deaf or hard of hearing? Do they hear certain pitches, while others are absent? Or do they have no hearing at all?
As important as the disability is how the person acquired it. Were they born that way? Did they lose ability to something like cancer or meningitis? Or was it a traumatic accident? For me, the extremely traumatic way that I lost my legs is, quite often, more distressing than the disability itself.
Here are some helpful resources, with more detailed information about a few physical disabilities.
* Spinal Cord Injury
* Blindness and Visual Impairment
* Deafness and Hearing Loss / Deafness and Hearing Loss
* Invisible Disabilities
What, if any, assistive devices do your character use?
Assistive devices are often a very serious point of debate, within the disabled community. Many Deaf people advocate for the use of cochlear implants, while many more reject the concept entirely. I’ve seen amputees threaten each other with violence over whether or not it’s “okay” to use a wheelchair for mobility, when prosthetics are an on-paper option. The notion that a disabled person should do their best to appear able is, according to many, an ableist notion. (“The world is designed for able-bodied people, so we have to try and present as able-bodied as possible.”) In my opinion, assistive devices are there to make your life easier, less frustrating, and less painful. So, if sitting in a wheelchair is better for your body and your lifestyle than walking on crutches, sit in the dang wheelchair! Side note: health insurance (especially in the United States) is a nightmare for people with disabilities. Maybe your character desperately wants prosthetics, but is stuck in a chair because they can’t afford to shell out hundreds of thousands of dollars, out-of-pocket. That was my reality for a long, long time!
How does your character perceive themselves?
Does their disability bother them, or is it a point of pride? Is it in the forefront of their mind, every minute of every day, or does it only crop up as an occasional annoyance? You’d be surprised what a person can get used to, and how far the definition of ‘normal’ can stretch when it has to. Where does your character fall in the person-first/ identity-first debate? (As you can tell from this guide, I personally oscillate back and forth between the two with zero rhyme or reason.)
As cliché as it sounds, disabled people honestly are just like everyone else. We can be lazy and unmotivated, and we’re perfectly capable of making bad, shameful, hurtful choices (believe me…).
That, and our disability does not erase our sexuality (if we have and choose to act on sexuality)! It may not always look the same as able-bodied sexuality, but it exists, and it’s just as valid and thrilling. For example, someone with Cerebral Palsy may feel more comfortable using extra cushions to prop them up when they top, or a hanging sling to lie in when they bottom. A person with a spinal cord injury’s most sensitive erogenous zone may actually move to the area on their chest or stomach just above where their sensation starts to fade. And someone who had their legs amputated may (and I swear to you, this is not a joke) feel their orgasm in their phantom feet, in tandem with, and just as intensely as they feel it elsewhere on their body. For more info, you can check out:
Or, for a story about an objectively evil woman (with a pretty substantial disability) doing nothing but making bad, hurtful choices and getting laid, there’s always The Tragedy of Darth Annihila the Untamed, by yours truly! (Heads-up: it’s Star Wars. A canon that is notably overrun by annoying, whiny, heroic, evil, sex-having disabled people.)
How does the world perceive your character?
Basically, is it in line with the way the character perceives themselves, or does the world come at them with a much different set of expectations? Do people offer (or force) help when they don’t need it? Does your character get yelled at for parking in the disabled space, because they look “normal” from the shoulders-up, or while wearing long pants? How do their friends and family react? Their romantic partners? Hook-ups? (Yes, disabled people are allowed to have random hookups.)
Keep culture in mind, too! The Japanese half of my family had a much harder time coming to terms with the loss of my legs than, honestly, I did. Disability is a weirdly shameful thing in a lot of Asian cultures, and is not very well understood or accepted.
Whatever happened to that young girl?
A Galaxy of Gay Glories—May the Fourth Be With You
The Pendulum Swings (Or 3 Important Things)
This question also applies to you, their author. Always keep on the look-out that you’re not writing “inspiration porn.” (I’ll let Stella Young define that for you here) Because as inspirational as they can be, disabled people are, first and foremost, regular human people. Not every disabled character has to be a Paralympian! And even Paralympians are deeply flawed individuals.
Keep in mind, this is all just one guy’s opinion! Like every other demographic and cultural group, we’re constantly arguing debating amongst ourselves about what’s correct and what’s incorrect, and everyone has their own opinions. As always, the best way to learn about a disability is to listen to someone who has it. Here are some fantastic people I’d recommend looking at!
Claire Wineland, who handled her Cystic Fibrosis with grace, humor, and unfailing beauty and kindness. She passed away in 2018, but her strength and her message are timeless. Before she passed, she founded Claire’s Place – a nonprofit organization that provides support for children with CF and their families.
Drew Lynch, a stand-up comedian who developed a stutter after sustaining a head and neck injury as a child. Genuinely one of the funniest people I’ve ever seen, and a true Zen master of heckler-destruction. His service dog Stella features prominently in his videos, and I cannot overstate the goodness of that girl.
Zach Anner, a comedian, actor, and author with Cerebral Palsy (in his words: “the sexiest of all of the palsies”). He makes funny and at times enraging videos about what it’s like to try and navigate the world in an electric wheelchair, all viewed through the lens of his side-splitting and irreverent humor.
Molly Burke, the self-described “typical basic millennial girl who just happens to be blind.” She makes videos about her daily life: how she uses technology, navigates her home, cooks, and works with her guide dog.
Rikki Poynter, a deaf activist and public speaker. She covers topics like beauty and fitness, with a distinct focus on Deaf awareness, accessibility, and the vital importance of closed captioning. She also makes videos critiquing pop-culture portrayals of Deafness, which are some of the most eye-opening analyses I’ve ever seen.
Rachelle Friedman Chapman, a quadriplegic woman who rose to disability hero-status when she publicly shared boudoir photos she’d had taken, where her colostomy bag is plainly visible. She’s an absolute icon when it comes to people with disabilities embracing their sexuality!
Shane Burcaw, a comedian, author, and public speaker who was born with Spinal Muscular Atrophy and lives in an electric wheelchair. He and his wife Hannah talk candidly about what it’s like to live in an inter-abled relationship, and the strange, sometimes baffling way people perceive them.
And finally, Josh Sundquist, a unilateral hip-disarticulation amputee. He’s been a Paralympic Alpine Ski racer, an author, a comedian, and a public speaker. You’ll probably have seen his extremely creative Halloween costumes (lawn flamingo, Pixar logo, Christmas Story lamp), or screenshots of conversations where he makes up ridiculous stories when people ask him invasive questions.
Bottom line is, people with disabilities live complex, nuanced, frustrating, joyous, boring lives. We experience love and heartbreak, we laugh and scream and cry, and most of the time, it has absolutely nothing to do with our disabilities at all. We’re black, white, yellow and brown; straight and queer, cis and trans. We have cats that misbehave, and jobs that stress us out. Maybe we drink our feelings, or maybe we have no trauma at all. And maybe we’re reluctant heroes, waiting for that one, fateful call to action to show up on our doorstep. Above all, we live in a world that is not designed with us in mind, and so we are very, very used to being forgotten. But through realistic representation in fiction, we as writers can help shift those attitudes.
I hope this helps, and happy writing!!