Elsa S. Henry: On Teaching Disabled Representation In Fiction

Elsa S. Henry returns to terribleminds (when last we saw her, she wrote the vital “So, You Wanna Write A Blind Character?” — she’s now going to teach a class on the subject of representing disability in fiction. Would you like to hear more? You should.

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Six years ago in graduate school was when I realized that my identity as a disabled person mattered, whether I wanted it to or not. There’s something really scary about sitting in a room with a bunch of your peers, and suddenly realizing that they’ve made assumptions about whether or not you can have children all because you’re deaf and blind.

Six years ago was when I transformed from a person with a disability to a disabled person. For me, that shift meant that I stopped distancing myself from the body I was born in, and gave voice to a whole list of frustrations I’d been telling myself didn’t matter.

I’d been telling myself for my whole life that my disabilities didn’t shape me, or my life. That people didn’t give a fuck whether or not I could see – but the truth was, they did, and they still do.

Which is why I started speaking out about why representation matters. It doesn’t just matter because my feelings get hurt, it matters because the world around me judges me based on what they see about disabled people out there in the media.

When George Takei posts a meme joking about how a wheelchair user stood up and could reach for alcohol because that was “a miracle,” that reinforces that wheelchairs are only for people who can never stand up. (Link: http://rampyourvoice.com/2014/08/19/the-george-takei-disabled-meme-controversy-the-offense-response-public-apology/)

When Daredevil throws his cane away in an alley, it reinforces the fact that people with disabilities are faking.

When I flinch because someone grabs my arm and asks me if I need help while they’re moving me in the opposite direction from my goal- well, they learned that because the media tells them that blind people always need their help.

Representation fucking matters.

I’m the kind of person who wants to fix things, so when i realized that I had the skills to fix some of the problems that I see out there, I started writing. I started speaking. I started pitching books and articles, and asking people to listen to me.

And not everyone was happy about it.

I’ve gotten threats through email and harassment on twitter, all because I’m just saying we should have better representation of blind people. Just because I don’t think it’s useful to only represent tropes of disability as the only disability representations out there.

So now I’m teaching.

A few months back I went on a bit of a rage spiral about how an able bodied person was teaching a class about how to write disabled characters. I basically threw down the gauntlet, and I said I wanted to teach. And boy, I should always think about what I put out into the universe because I got plenty of teaching offers. Including the one coming up next month.

I’m teaching a Master Class on deaf and blind characters for Writing the Other.

You should come. It’ll be great.

It’ll be great because I’m deeply invested in changing the way that people write about disabled characters, the way that we develop a fictional world matters. Because science fiction and speculative fiction aren’t just reflections of the world we already live in, they’re reflections of the world we want to build, the place we want to claim as our own in the future. If we keep writing stories and futures where we don’t include disabled people, then disabled people will continue to be invisible, until someone decides we don’t exist anymore.

Dystopian futures don’t include us, even though our stories would be fascinating to tell. Cyberpunk futures erase our bodies, claiming that to be augmented is better than anythng. Erasing disability from your future doesn’t just suggest that we won’t matter in the future, it suggests that we won’t exist.

I don’t want to live in a world where I have no claim to my body, or to the identities which have shaped me.

My disabled identity only came to me six years ago, but now that it is a part of me, I know I could never give it up without a fight.

Claiming crip (Link: http://www.rootedinrights.org/claiming-crip-to-reclaim-identity/)  gave me more than just an identity that meshed with my experience of the world – a place where I have been denied opportunities on the basis of my disability, a world where I have literally been blamed for the bad things that have happened to me because I am blind. Claiming crip gave me a place where others would lift me up for being who I am, and for inhabiting the body that I have.

When I teach Writing the Other, I’ll be giving able bodied writers a glimpse into the world of disability, a chance to understand what it means to make choices based on the body you own, not just the one you might rent in a cyberpunk future.

I promise I don’t bite. But I do want to give you an education. One that’ll change the way you look at disability, from heroes to people. From overcoming narratives to living. From wheelchair bound, to valuing the chair as an equalizer.

So join me on September 10th.

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Elsa Sjunneson-Henry is a half-blind, half-deaf, half-Scandinavian writer who haunts New Jersey. She’s worked on tabetop RPG books, been in fiction anthologies (check out Ghost in the Cogs from Broken Eye Books), and has written a number of nonfiction articles about disability. You can find those floating around on the internet. She can be found on twitter @snarkbat and at feministsonar.com. When she’s not frantically scribbling, she can be found singing Hamilton lyrics to her hound dog.

Elsa Henry: Website | Writing The Other


  • Dear Elsa,
    Thank you! Thank you so hard! I was just discussing Enter your comment here… the other day how as a disabled person I have lost some of my privacy because I’m an oddity that makes people curious. I don’t know how many times strangers have asked me “Is it hard being blind?” or “How long have you been blind?” or some variant. Disabled people matter damn it! And not just because we’re disabled, but because we’re people too!. So, again, thank you so hard for trying to enlighten people that we’re not invisible!
    Best of luck to you,

  • Ohman, I really hope my credit card arrives in the mail today so I can claim a spot…One of my characters goes blind during a series and I am trying so hard not to be “that writer”.

  • Looking into that class. Your last post hit at a time when I was plotting a book featuring a blind protagonist, and helped shaped some of my research. Representation does matter, and I’m glad you’re helping teach so people will know what that means.

  • Hi Elsa

    As a legally-blind writer myself, I can’t tell you how awesome it is that you’re doing this. I would love to see more disabled characters written wi

    And the people pulling you along on the street … oh girl, do I feel you on that! I was once reading a book by myself in the university quad, when a guy came up and literally SHOVED his glasses under my nose. He was standing there smiling as if I was supposed to thank him. I was so shocked and frightened I just ran away. Now I’d probably say something.

    I wrote a blind character in my steampunk series. He’s a fictional representation of a man who’s actually one of my heroes. I feel bad about some of the stuff his character did, but I’m proud to have written a character who wasn’t a wise sage or a blind martyr. He’s deeply flawed and I wanted him to be thus.

    I will spread the word about your class!

  • I get confused about whether I’m “allowed” to write about disabled characters. Or genderqueer characters. Or anyone other than middle class white female characters, because I haven’t experienced life in their shoes so how dare I? Am I helping you be visible, or am I co-opting your identity for my own uses?

    • Of course you’re allowed. We’re all unique with distinct life experiences regardless of our gender, the color of our skin, or the functionality of our sensory organs or limbs.

      If someone tells you you’re “not allowed” tell them to piss off. You’re a writer. The job of a writer is to crate characters and places and ideas and stories — it’s the whole point. Because I’ve never been been an Asian eunuch on a starship hundreds of light years away doesn’t mean I can’t write about it, or imagine what it would be like to be that person in that time.

      Don’t be confused. Confusion is for those who say “You can’t do that — because.” Yes you can. Just do it.

    • You are absolutely allowed to write anything you want to. But if you’re going to write about factual things you don’t know, or only know through media you’ve consumed, it will help if you do some research.

      There are entire classes on writing about horses in fantasy and westerns correctly. Writing about a disabled character is both more complicated and easier. More complex because there’s a lot of give and take in a social situation so the same set up may have a dozen possible “right” ways to handle it, and easier because you can find beta readers who will help you get the details right. And I’m saying “readers” plural, because experiences and disabilities will be different.

      I’m disabled and have made a couple comments on several writer friends’ characters- like having a young and athletic manual wheelchair user take the stairs to his apartment. (search for wheelchair stairs and Mad Martini to see how it’s done.) I plan to run a manuscript past some of my more sensitive and angry friends because my experiences are not universal. Not because I think their voices should out vote mine, but because I want to include as many experiences as I can.

      As to co-opting experiences for your own uses, is the “other” character what makes the story special? That is, if the story is about how brave or inspirational a person with Cerebral Palsy is for going to high school and graduating- that would be an otherwise unremarkable expectation for an able bodied character- then you’re crossing a line into focusing on the wrong part of your characterization. If it’s a story about how the person wants to find, buy, and rebuild a 1967 Impala and has plans to get an anti-possession tattoo on their 18th birthday because they are in love with Supernatural and the family dynamic of the brothers on the show because they feel isolated from their family and that level of geeking out is causing them troubles with their grades and attendance and on top of that they have Cerebral Palsy, well, that’s a story I’d be interested in reading.

      You don’t have to get it perfect. Just please don’t make the disability or the genderqueer or the whatever the whole point of the story. I like reading about people, especially people I can relate to because they’ve got an extra level of troubles similar to mine. I really dislike reading inspiration porn and morality tales that make the most inconvenient, mundane parts of my day the whole point of the story.

      Read memoirs. A short list to start with: Dr. Temple Grandin (Thinking in Pictures), Mark Zupan (GIMP, also the documentary Murderball), John Callahan (Don’t Worry, He Won’t Get Far on Foot), Lucy Blackman (Lucy’s Story), there are many more.

      • Thanks everyone those are some great comments. I am a bit wary because when I did a writing course a while ago I was warned not to write about Australian Aborigines, it can get a bit sensitive. But I don’t want every character to be me thinly disguised.

        I’ve seen a TV show called “You Can’t Ask That” where they get a group of people in roughly the same category (I’ve seen one with people in wheelchairs, and one with people in polyamorous relationships) and ask them all the questions that you’re not supposed to ask (but people do anyway: how do you go to the toilet? Is every sexual experience an orgy?). The reactions to each question were very different from interviewee to interviewee. Some were offended by particular questions, some happy to educate the ignorant, and everything in between. Use of a wheelchair did not make them all the same: “people in wheelchairs think this…” Which is human and great, but also complicates knowing what will offend and what won’t.

  • I was marking with colors all the passages I loved from this post and IT WAS EVERY FUCKING WORD. This is such an amazing post, Elsa. THANK YOU. Thank you for shedding light on disabilities. I’m a paraplegic woman, half-deaf as well, and yes, it’s so difficult to come to terms with our disability. Certainly it didn’t help that everyone was always trying to cure me instead of just MOVING ON with out lives. And sometimes I wonder how my own perception of my disability would have been if, during my childhood, I had just one character from a book or movie who was in a wheelchair and wasn’t completely awful. I now realize how much I needed at least one character who was like me. I read every book I could find, just trying not to feel so lonely, but never found what I needed. It is horrible to feel that you don’t exist, that you don’t matter, and you see it everywhere, in every non-accessible public transport, every ill-designed movie theatre, every pub without a handicap bathroom… Society wants us hidden, and most times it’s easier to give up. So we need writers in our corner. I hope you teach them well! 🙂

  • I’m mostly deaf in one ear, but my major disability is severe fibromyalgia. I often have people try to help me get out of chairs, help me up or down steps, help in me or out of my car — and when I’m helped I’m more likely to be hurt than when I do it myself. I haven’t tried (yet) to write disabled characters of any kind. Maybe I will take that step.

  • A number of years ago, I was writing about a blind central character and received a great deal of valuable help and advice from another author who, herself, is legally blind. Because of my own difficult childhood I have a tendency to include at least one person who is “different” in some way in my stories and have learned that wriitng about them as well as people with serious disabilities is a challenge all by itself. The author herself told me that at time she had an agent for several years. Their arrangement went well, she told me, until the agent found out she was blind and, because of that, she told my friend that she no longer wanted to represent her.. Personally, I was shocked, but she explained that this is not untypical of some people. She went on to explain that it is because blindness is probably the most feared of all disabilities and they can’t handle it. She was an enormous help to me and, after I finished my book, it was very well received. In my experience whenever one is creating a character who is “different” it pays to ask someone who is dealing with that challenge about themselves and their experiences, and, in my case, it definitely paid off.

  • Thanks for your post. My responses to specific statements:

    “There’s something really scary about sitting in a room with a bunch of your peers, and suddenly realizing that they’ve made assumptions about whether or not you can have children all because you’re deaf and blind.”

    People have made it very clear that they’ve judged me and found me guilty of having children while disabled. Apparently this is a criminal offence or, at least, a civil offence requiring communication of disapprobation.

    “When Daredevil throws his cane away in an alley, it reinforces the fact that people with disabilities are faking.”

    People have told me I should be grateful for Daredevil because LOOK, SECOND-CLASS CITIZEN, YOU HAVE REPRESENTATION. Meanwhile total strangers have accused me of faking my disability while, for example, waiting for the lights to change (“You can see. I can see your eyes move, you can see. Have you been to acting school? YOU CAN SEE”). And others… well, I had a 2 year fight at university to be allowed to study. The university agreed to give me large print for tests and exams but not for classroom activities; apparently I could cope in learning situations without disability access (which meant watching everyone else learning and not being allowed to learn myself. Repeatedly.). And, in 2005 when I was a Community Health Worker for the Department of Health in South Australia, my supervisor, the senior social worker, told me “Your disability is your choice because you’re too vain to wear coke-bottle glasses” while the agency repeatedly refused disability access then replaced me with a non-disabled student social worker who hadn’t even graduated from her Bachelor’s degree while I had 3 degrees in counselling and professional experience that meant the senior social worker assigned me cases at her pay scale not mine. I loathe and detest the fake disability trope. I hate Daredevil with a passion that is only growing over time.

    “When I flinch because someone grabs my arm…”

    I’ve nearly fallen down stairs because strangers have grabbed me from behind (assault) to stop me walking down the stairs clearly marked with TACs (tactile dots that warn “hazard ahead”) while I’m heading straight for them because I have some vision and a cane. My reaction to someone grabbing me is to pull against it to free myself. I don’t mind being asked if I need help; that kind of concern is the positive side of humanity in opposition to “fuck of and die crip”, “where is your carer?” and “you shouldn’t be out in public taking up space”.

    “A few months back I went on a bit of a rage spiral about how an able bodied person was teaching a class about how to write disabled characters.”

    In Australia, straight white nondisabled people feel entitled to misappropriate disability (e.g. “I don’t research, I use my IMAGINATION” so that must be ok because it’s an INTERNATIONALLY-RENOWNED AUTHOR SPEAKING -_- ). And the president of the local writing group told me my spec fic story about disability issues is not spec fic because it features disability issues, it made her feel uncomfortable so she said I should write a memoir and find a different writing group. When I told her I didn’t want to write a memoir because going back through the boxes of evidence I have collected and reliving these horrendous scenarios would destroy me, she emailed back and repeated her advice: write a memoir and find a different writing group. I’m waiting to hear that she’s written a story featuring a disabled character because she’s so PC she’s drafted/written a version of Beauty and the Beast featuring non-white gay characters.

    “My disabled identity only came to me six years ago, but now that it is a part of me, I know I could never give it up without a fight.”

    I grew up knowing I’m disabled: I was diagnosed at 6 months of age with a vision impairment and my first school, that I started aged 3, was the Bruce Hamilton Sight Savings School For The Visually Handicapped. Try saying that to adults when you’re 3 years old. Over and over and over again. I don’t know what was worse: being shoved into that stigma so young or my parents’ embarrassment about having a disabled child. However, I always knew I had a disability but I didn’t feel that I was disabled until I lost my job and my career in 2006 as a direct result of disability discrimination. It’s been a downhill slide since then: as time goes by and people become aware of my history, they are less and less discrete about their enactment of discrimination. I think that’s the worst aspect of “being out”: it makes ables feel that it’s ok to make shit worse because, hell, they’re only joining in the pile-on, they didn’t start it. And they can always tell me to find a different career/university/writing group because that’s legit advice, right? [eyeroll]

    The rest of your post has me responding “Yep, yep, you’re right” and hoping the class goes well.

    Just, please, give them a song and dance about vilifying disableds (disability is NOT a quick shorthand for villainy nor is it motivation to be a villain) and RANT about inspiration porn. I am not your fucking inspiration. I just read Aaron Starmer’s Spontaneous: I realise the first third of the book was the best then it went downhill from there but DID HE HAVE TO HAVE A MICROSCOPIC MENTION OF A DISABLED CHARACTER WHOSE SOLE ROLE WAS INSPIRATION PORN? And if anyone does another Me Before You I hope the book is vilified by disableds and receives only 1-star reviews because AWFUL TROPE.

    I’m so pleased you’ve been “allowed” to speak up on our behalf. And I feel sick that I even think that, but my experience is that ableists won’t allow me to speak or tell me “you’re wrong” about anything and everything to do with disability. Apparently my Graduate Diploma and Master of Social Science (Counselling Studies), my additional training including participating in Reins, Rope and Red Tape (a disability arts advocacy training course by people with disabilities for people with disabilities), my experience of advocating for myself and for others as a professional, apparently none of this is enough to overcome prejudice that prevents people with disabilities from gaining paid employment, from speaking out on their own behalf and absolutely prohibits people without disabilities from heeding a person with a disability. Rock the representation. Nothing about us without us. Our Voices. All the cliches because THEY MEAN SOMETHING.

    • Tell it like it is!! I’ve had people tell me I’m not blind, I’m visually impaired. Get out of here! I know what I am, and how dare someone tell me what I am. I’ve had sighted people argue with me about what blindness is like. Look, I live blind, don’t tell me what it’s like. And sometimes it’s the most well meaning who are the most insensitive. My family worries about me BECAUSE I’m blind. I know my limits better than anyone. I’ll decide what I can and can’t do thank you very much. I’ve also commited the crime of being a parent while blind. I was told that my disability was a burden to my daughter when she was six. Well, excuse me for breathing. Most of the time, sighted people just don’t get it. They see blindness how they want to see it; how it fits in their world view, if it does at all.
      Please note: I don’t mean all sighted people are like this. Some are actually fantastic about my disability. but to the majority of the world, I’m someone to be pitied, taken care of, or eliminated (only the most extreme folks believe this). Above all that though, I’m a person, same as anyone else. I have my own hopes and dreams. I’m an active part in my own life. Yes, some days I hate my disability. Most days, I don’t even think about it. It’s part of who I am.

      *gets off soapbox and takes off ranty pants*

  • To all the folk here who’ve had to suffer the ignorance of others, I stand in solidarity with you. I have my own challenges (half-deaf, other disabilities which prevent me from seeking and/or keeping “regular” employment), and try to recognize that my challenges do not define me. Thanks to Ms. Henry for the post and the links included therein (bookmarked several). Very valuable items!

  • Shame i can’t make the lecture. But this post was a little eye-opener. i’d like to hope I’d have realised most of these things you describe when i got around to writing a disabled character. But I’m honestly doubting if I’d ever think of writing one if I hadn’t read this.

    So now I’m ACTUALLY looking forward to writing “disabled” characters.

    thank you, and keep on doing what you’re doing!

  • So, hi. So glad to get to know you here. I just wrote to you on your other blog. This is what is so rough about being a person with a disability and a writer that wants to write about it…Well, there is a lot but here is the one thing. I agree with your transition to “disabled person” from “person with.” But, I know people with disabilities who would want to burn your book because you’re not saying “people with disabilities.” I am not one of these people. I so prefer to concentrate on the deeper issues and not fight over language. I also know some people that LOVE Daredevil and find it empowering. It is SO HARD to speak for a whole group. Your pretty much doomed to pissing everyone off. I am writing a book that has teens with disabilities who use magic. They ARE NOT MAGICAL DISABLED PEOPLE, but I know no matter what I do they will make all upset. Meanwhile, I grew up as a girl with cerebral palsy who wanted to have powers. I didn’t want a cure. I wanted powers, damn it! I mean most of the time I didn’t want a cure, but there is no way any disabled kid grew up never wanting a care. You don’t get that “part of your identity thing” until you in your 20s and as a therapist I know if you try to push it on people it doesn’t work. I think we are the most diverse minority and our identities are so vast. I would love to hear how you teach and more of your thoughts.

  • I have astigmatism–actually better than average long, short, and middle-range vision for whatever age I’ve been, all my life, but my eyes don’t *focus* quickly. Glasses to correct astigmatism have to be specially made, are expensive, take some time to get used to, and may even reduce visual acuity at some distances; I’ve been able to spare myself that burden.

    Instead I’ve carried the burden, throughout life, of being able to see someone’s face clearly just when their face is registering that I’ve missed some sort of facial tic that they intended to mean something, and so they’ve written me off, forever, as hostile, stupid, insensitive, or all of the above. Not everyone in the world does this, and visual thinkers usually deny that they do it–but they do it.

    Most of my close real-world friends have had some sort of visual impairment. They’re not hung up on how fast my eyes focus; they don’t necessarily even see that. Most of them aren’t blind, can drive and can enjoy colors, but they

    * wear glasses
    * and/or are blind on one side
    * and/or would have been blind on one side without an eye transplant
    * and/or are nearsighted or farsighted
    * and/or have astigmatism like me.

    And we haaate web sites where the point of a post is supposed to be made by a picture or video.

    Apart from that, most of us aren’t considered disabled (I’m not), but there’s always been a certain interest in physical disability issues, especially blindness.

    And what I’ve written that’s featured blind characters may have been fictionalized, but it’s written from fact.

    I look forward to reading more from Elsa S. Henry.

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