(In this inaugural column of Writing While Disabled, Kristy Anne Cox interviews Nisi Shawl.)
Kristy Anne Cox: I’m so pleased to be interviewing the wonderful Nisi Shawl today! Nisi lives in Seattle, and is a writer, editor, educator, Nebula finalist, and winner of both the World Fantasy Award and the Tiptree/Otherwise award! If you’re lucky enough to hear one of Nisi’s readings live, they may even sing you a song! Nisi’s pronouns are they/them.
Hi, Nisi! First I’d like to thank you for giving this interview! Let’s start with introducing our readers to you. Would you mind telling us about yourself and your work?
Nisi Shawl: I'm a 65-year-old writer from the Midwest. I began my writing career as a poet, and have gradually lengthened the forms I create, moving on to short stories, novellas, and eventually novels. I'm working on a sequel now to my debut novel Everfair, so I may be about to write a series! The sequel is called Kinning, and I've been focusing on it almost exclusively since March 2020. I've also written three short stories in that period, but usually by this time I would have finished eight or nine, so that's definitely a decrease.
I also write nonfiction—reviews, essays, and so on—and edit.
KAC: How do you fit into the disabled community? Which disabled communities do you identify with?
NS: Broadly speaking, I'm someone who wasn't born disabled but acquired disability over my life. And most of my disabilities are invisible, so I identify pretty strongly with that sort of meta-community.
I think the first identity I found as a disabled person was that of a fibromyalgian, as you might say. Very mysterious pain syndrome, and yeah, it's not real visible in others, even to those in its grip. I attended a class of people coping with fibro and that was my first real community experience of that bond.
I'm about eight years into life with glaucoma, which has placed me in the low-vision community. My experience there is less chummy, but I still find myself gravitating to others I know are sharing common concerns, such as the ex-drummer of my punk rock band, who recently got back in touch with me. We have writing sessions together. More than sympathy, he offers me concrete solutions, technical approaches, things that he knows will help.
KAC: What specific barriers or speed bumps in the writing community have you faced as a disabled writer? As a multiply marginalized disabled writer?
NS: Since my disabilities have emerged gradually throughout my life, my experience of the barriers erected because of them is that I encountered these barriers after my writing career has had a degree of success. Specifically, people are asking me to blurb books, or speak on panels, or do all this other unpaid work that I would love to do but that I simply can't afford to do. I have only a certain number of vertical minutes in a day, and I have to monetize them. And I get that I'm expected to mentor emerging disabled writers, and to support the presence of writers from many, many marginalized communities. I really want to do that. I am the exact opposite of a snob. But it's just not always possible. I despair sometimes of people realizing my limitations in that sense.
KAC: So, as a follow up to that question, I heard you speak on a panel once at WisCon, where you said that women and non-binary folk often come to the writing milestones that one expects of a writer later in life because of all the marginalization that they face. Do you feel like that applies to disabled people as well?
NS: Yes. I do for any marginalized group. That definitely applies. I had this sort of twisting in my gut the first time I saw in The New Yorker a list of you know, what was it? 40 Writers Under 40 or something that people were supposed to be applauding. And I thought, well, you know, that's all very well. And, you know, I can see how people would think that someone that's coming up and emerging deserves special attention. But why make it agist? You know, there are forces that work against you, being older as a writer and in publishing. For instance, you'll get pushback if you try to get into publishing as an intern in your forties. The rationale that people are giving, I guess, is like, well, why didn't you know that you wanted to do this before? Well, maybe they did, and they had to take care of their pain levels. Or they had to raise children. Or, they had to get an education which, because of class reasons, they had no money to do until they were in their thirties. I find it incredibly privileged, actually.
KAC: Yeah, I had kind of a similar reaction to seeing lists like that because then you feel guilty. You're comparing yourself, like, why am I forty and I haven't done all those things in my writing career yet?
NS: Yeah, and the way that that education, for instance, has been set up in the past. Someone who is not cited has a really hard time. Or at least has had a really hard time. I remember. I don't know what the medical cause was, but there was a period in my freshman year at Residential College, University of Michigan, where I was told not to read for three weeks. And that was out of the question. That was totally out. That could not happen. Was I supposed to hire someone to read for me, and then highlight the text for me and go back over the parts that were highlighted? For all these historical reasons, that is a totally unrealistic yardstick to go by for anyone in a marginalized community.
KAC: Yeah, that makes sense. Can I ask you how your disabilities impact and inform your work?
NS: Well, as we've seen, typing right now—not really the greatest thing for me to do for long periods. Fortunately, my writing process is such that I am editing as I go. I'm not one of those people who say, "I'm going to write three thousand words and then I'll edit them." I just write very slowly. And hopefully what I write stays. I don't know if that was—I think that's just fortuitous circumstance that my method fits with my capabilities, my physical capabilities. I'm now using a huge, eighteen inches ... no, it must be larger. I don't even know. I should get out a ... it's got to be at least at least a thirty-inch computer screen so that I can see the words! Because, like with the glaucoma that went untreated for eight years, because I had no insurance, that has reduced my visual acuity to about sixty percent of what it used to be, even with glasses. So, that's an accommodation, but it also makes it very hard for me to read other books. I can't read on the screen because that means that I have to sit up, and that causes me physical pain after a certain period. I can't read in bed because there's no screen there and the print is really small. And so, for many years, I have been the editor of the reviews section of Cascadia Subduction Zone, and I have also done my own reviews for Cascadia Subduction Zone, for The Seattle Times, for The Los Angeles Review of Books, for all these different places. Washington Post. I have a really hard time doing that now, because reading is part of it. And reading causes difficulty.
KAC: Yeah, it takes time and energy to find the right accommodation for you. And that can be really hard when you're dealing with medical problems or a full-time job or kids or all these other issues that that not everyone has, but they're writing.
NS: And also, the thing is not just that you have these issues, but that they change over time. So you can come up with an accommodation that works this year. But be prepared to change, because that accommodation may not work in two or three years.
KAC: Okay. So, what is your writing process like?
NS: Oh, that? Ha! I went once to a writing retreat. That was basically just me living in an apartment and writing. But the person who was running the whole facility, all the apartments and everything, came over to visit one time, and she saw that I had this altar built up. She saw that I had photos that were sort of models/templates for some of my characters pasted on the wall, that I was like burning incense, that I associated with what I was writing. It was Everfair at the time. And I was listening to music, to evoke the place. She said, "Well, you have a very developed writing process." which just cracked me up. What a diplomatic way of saying, "You are doing a lot of stuff that nobody needs to do." A very developed process. Yes, yes. She wasn't British, but that is like, I think, a classic example of British understatement. So yeah, what I do is, I wait until ... often until I've either gotten inspiration from someone's prompt or from a concatenation of different ideas; one idea is not enough to write. It's just not. But if I have an idea, and then someone else has a prompt that comes at something from a different angle, then I can write it. And usually what I will do is start a file with notes on a story that I'm thinking of writing. Like, is the wood wide web involved? And I'll put links to online articles. And I'll write the names of authors that I'm interested in investigating and just make this sort of ... it's like hummus. Uh, no not hummus. Sorry. It’s like humus. It's like this soil that my story can grow in. Then when I'm trying to write it, I set aside the time, and I don't let anybody mess with it. And I pray. I pray to the deity of communication in my tradition. My tradition is Ifa and I pray to Eshu, also known as Elegba, who communicates between different realms and is also ... pretty much in charge of the written word. So I pray for help there, and to my ancestors, and to any other deities that I think are particularly prominent in what I'm trying to present. If I'm writing about something that takes place in the ocean, maybe an ocean deity. And I start to associate incense and sometimes foods and often music with the story, because then I can go away from the story and live another relatively normal life, but then come back and the sensory cues will put me back in the mental frame of the story. So I keep notes, like when I wrote this story, I was listening to this kind of music and making an offering of cornmeal. And I was burning a candle anointed with Lily of the Valley oil, and all this different stuff because then, when people want revisions—and editors almost always do—then I have those cues on the card. And even if it's been months or a year, I can go back and reconstruct the sensory cues.
KAC: That's amazing. I love using sensory cues for writing, but I hadn't thought about tying them to a specific project like that before.
NS: Uh huh. So you just would do it for, like, all—any writing.
KAC: Yeah, I like it. I light candles whenever I write, and they always smell like pomegranate. And that's the smell I have associated with writing. But I really love the idea of having a particular fragrance or a particular sound or any other sensory cues to help you kind of get back in the zone of a particular project. I think that would work for abled people, too. But that's a really good accommodation.
NS: It's not foolproof, right? And like, you know, some people have sensitivities to certain smells so that, you know, they couldn't do that.
KAC: So, has the pandemic impacted your writing? Can you tell us a little bit about that?
NS: It has definitely impacted the process. Before the pandemic, I wrote in as much solitude as I could get. It was okay if people were around me as long as they didn't talk, like, no words. I didn't want any words in my ears because I was too busy hearing what I was going to write. Now I find myself writing basically during Zoom meetings. I have two scheduled meetings.
But I have two scheduled meetings every day with different writers. We get together, we talk for a few minutes. We talk about craft questions or what's going on in the world. You know, politics, music, whatever. And then we mute and write for forty-five minutes, fifty minutes, something like that. And then we report back. So there's this accountability thing going on, there's a sense of community, and yet there's also separation. I'm not hearing people talk. I don't have to see them if I don't want to. Although sometimes I take a peek because it's kind of inspiring to see other people focusing.
KAC: Yeah, getting the work done.
NS: Yeah. Although once I took a peek and someone was picking their nose. (Hahaha)
One of the things I've noticed is that the people that I do this with almost all have disabilities of one sort or another. And part of what we talk about is, "how are you feeling today?" Sometimes people have to bow out for the day because they just can't be vertical. They have to be lying down, with their eyes shut. But almost all of them are neuro-diverse in some way, or they have some physical issue ... I don't even know if I can run down the different things because I also am distrustful of the categories that are given to us as far as what our disabilities are called.
KAC: And that's a really loaded question, when it comes from an abled person, "how are you doing today?" But when it comes from a disabled person, it's kind of community building. Do you experience that?
NS: It really is. You know, there was—there were a few days when I was in—I would call them High Pain Days, and with fibro, I have not found a reliable pattern for what triggers the pain. Some things do, but then some things don't, and then the pain comes without it. So we were talking about the experience of pain in our breaks. What does pain do for you, and how do you experience it, how do you handle it, what do you dislike about it? And all that kind of stuff. And then we would get back to writing. So it was a very much an integration of understanding and sharing thoughts about disability, and sharing and understanding thoughts about writing and doing the work.
KAC: Yeah. Do you have any specific methods you use to write when you're in pain?
NS: Well, drugs.
NS: Let's not forget about the wonders of ibuprofen. And I recently discovered—this was also writing related, actually. It's funny how they feed back and forth. But I was writing in Everfair about a herb called dagga, or wild dagga, also known as lion's tail. So for research purposes, I decided I needed to try some of this herb. It is completely legal in the US, so I went online, I found a source and started smoking it. It does wonders for pain. I guess it makes sense, because the effects are very much like marijuana, and marijuana is noted for easing pain. Sometimes I'll have to roll up a joint of this dagga stuff as one of my aids to writing. I also have a brace that one of the people in my group loaned me, a wrist brace.
KAC: It's a wrist brace, is it like a carpal tunnel wrist brace?
NS: Yeah. Yeah. And I don't have carpal tunnel, but sometimes, for whatever reason, one of my wrists starts paining me.
KAC: For our readers, Nisi is holding up a wrist brace that has Velcro attachments that runs from the wrist and part way up the arm towards the elbow. It's the type of brace you will see for carpal tunnel.
NS: And someone else who had carpal tunnel and had recovered from it, in one of my writing meetings, just sent it to me, gave it to me. So that's the kinds of accommodations I mentioned that I had gotten together—one of the members of one of these groups, he was the drummer for a punk rock group that I had started, and he's low-vision. Totally different cause than my glaucoma. I can't remember the name now. It's like macular degeneration, but it's not. It's a genetic thing. He's in his fifties and he hasn't seen a star for forty years. He offers also all sorts of low-vision accommodations for writing. It's not that I feel like I'm going to stop. It's just going to change.
KAC: Have you used many voice-to-text dictation software programs?
NS: I have. But quite a while ago, when I broke one of my arms. Gosh, this must have been twenty years ago, and I used Dragon Naturally Speaking, then. I'm sure that it has improved, but my experience was not that great for two reasons. First, I write science fiction and fantasy mostly, and we have a lot of what are called neologisms. It's like, you have to train the program all for all these new words like "Khanate" and "ansible". It doesn't come knowing what an ansible is, so it tries to translate it differently. The other thing is that I correct and edit as I go. That is very clumsy when you're trying to do it verbally, as opposed to while you’re writing.
KAC: Yeah, that's something I've really struggled with as I'm trying to learn voice to text. The learning curve, also, has been an issue. I think for newly disabled people, a lot of potential accommodations can be really overwhelming at first while you learn how to use the technology.
NS: Yeah. And sometimes the technology is just not well thought out. Another person in one of my meetings, she's using a reader, an audio reader. Because she can't focus by looking at the thing. It's a neuro-atypical thing, right? She needs to hear it. So, she has things read to her. But the person who designed the software made the stop button much larger than the pause button. And so, if you hit the stop button, which is much more visible, then it goes all the way back to the beginning of whatever text, rather than just pausing and then resuming where you left off.
KAC: So, interface issues can be a problem too.
NS: Yes, definitely as you—I'm sure you've experienced.
KAC: Yeah, I mean, the issue I've had with text readers is that they will describe emojis to me one by one. So if people put twelve clapping hands, it will describe the skin tone of the clapping hand, and that hands are clapping. "Yellow hands are clapping, brown hands are clapping, pink hands are clapping, rainbow hands are clapping." It really depends on your program. That can be really agonizing.
NS: Yeah, that sounds awful. I'm sorry, I'm laughing. But what else can you do?
KAC: It's funny, too, right?
So when you are working with low-vision characters, are those inspired by your experiences? I recall a short story you wrote where you have a character with, I believe she had glaucoma, but she had a vision impairment.
NS: The only one that I am very conscious of having done is a short short that appeared ... I think it was in Wired. It was called "The Third Petal", is that the one you're talking about?
KAC: I think so.
NS: Yeah, that was completely drawn on my experience down to ... the classic idea of loss of sight is that everything gets darker, but my experience is that everything gets brighter, right? And instead of a field of black, gradually engulfing what I can see, it's the field of white, and I used that. And other people were like, "Where did this come from?" And I'm like, "From me."
KAC: From lived experience.
NS: Yeah, but I don't think I have written any other characters that I can recall that are human that are low-sighted. I did write a story from a dog's point of view, and the dog didn't really care about what things looked like anyway. It was all about how they smell.
KAC: You know, that segues nicely into another question that I wanted to ask, which is, this pattern that disabled writers are hearing from abled or differently abled people that their disabled characters aren't disabled enough, aren't believable, aren't disabled the right way, you know? Have you experienced that?
NS: Yes, I have. And some of that I take to heart because I do not necessarily write everything from my own experience. That particular character, I think her name is Bridy in "The Third Petal", that's based on my own experience. But I also wrote a short story called, "The Things I Missed the Most," in which the narrator, the protagonist, had a seizure disorder. And I don't and never have. So I had to base that on research, including talking with people that I know that have seizure disorders and listening to things that they said without them intending to describe and lecture about what they were going through. So I fully acknowledge that I can get it wrong. I just question when people are saying that I got it wrong ... Well, how do they know what's right?
KAC: One thing I've particularly seen is, "This character has too many disabilities. You need to have them focus on one." And most of the disabled people I know have multiple disabilities.
NS: Thank you. Yeah, I had not heard that one, but yeah, that's sort of like people not getting intersectionalism, isn’t it?
KAC: Right? Like, "There's too much going on for this character. Please make them conveniently marginalized in only one way, so that our non-marginalized readers will get it."
NS: And they'll have a convenient label to put on them.
KAC: Yeah. I mean, the assumption there is that marginalized folks don't read science fiction. Which is not true.
KAC: What about harmful narratives about disabled people, like "the cure" or, "the scrappy best friend who gets killed off"? Have you seen a lot of that, or do you push back against those narratives with your work? Are you thinking about those harmful stories when you're writing disabled characters?
NS: I am, mostly from the point of view of wondering, "Do I somehow accidentally match these slots?" I'm not thinking like, "Oh, good. We can have this person die off so that now we don't have to worry about representing their disability," and also the person that's able will take on the mantle of responsibility for living out that person's dream. I don't do that. That is not how I approach my work. If I am writing about someone with a disability, then I am just writing about their agenda and how they interact with the world and the consequences of their difference from the dominant paradigm. But I'm not thinking about how they can serve someone abled.
KAC: Right. I mean, one really specific example would be in films and movies or books where it's a wartime situation, or combat situation, and someone gets injured in a way that would make them permanently disabled. And they always say, "I'll stay behind and hold off the enemy." And they sacrifice their lives so that the non-injured characters can escape. That's a really common one. And it's hard to avoid that, but the message is, if you're disabled in that way, you're expendable now.
NS: Yeah, and kudos to you for seeing that and recognizing it. I had not even thought about that one. The one that I'm most conscious of is, someone who survives that kind of injury and kills himself. Because they can't stand living as a disabled person.
KAC: Right, which is the Million-Dollar Baby ending of that. Like the famous movie ending, that controversial euthanasia scene. And then Gattaca has that too.
NS: Oh, God. Don't get me started about Gattaca. I hate that film. Come on, I hate it.
KAC: It's not my favorite either.
NS: I belonged for a while to a group where we would mostly read books, sometimes play games, watch films. And I watched this film as part of that group, and I was fuming the entire time!
Yeah, just the individualism of it to just really got to me. If this person really does believe that their physical handicap will cause harm to others, why are we applauding them going beyond it? On so many levels, so many ways, it's wrong.
KAC: Oh, I 100 percent agree. I could rant about that film for a while, but why don’t we move back to process? Where do you fall on the spectrum between "outliner" or a "discovery'" writer?
NS: Oh, a 'discovery writer', that is a polite term. I'm more familiar with "pantser", as in, "seat of the pants." It is not binary, is it? It's a spectrum. So yeah, a great way to ask that question. I would say on a scale of one to eleven, with one being "outlining" and eleven being "discovery", I am about nine point five. I do know where I'm going. I don't always recognize when I get there, though.
KAC: Do you usually have an ending in mind?
NS: I usually have an ending in mind, some sort of resolution, be it emotional or event based, or attitude or philosophy based, whatever. But, one of the exercises that I have my students do is—and I stole this. I totally stole this from Nicola Griffith, by the way—is come up with a metaphor for your writing process. So here's mine: I have a machete, a compass, and a canteen full of water. I'm standing on one side of the Rift Valley. The end of the story is on the other side of the Rift Valley. So, there it is. And the task of the story is to go across, to take me across. So I descend into the valley and I'm cutting away at metaphors and hacking off phrases and examining minute choices that lead to larger consequences. And occasionally I can climb a tree and look. And "oh, this is the way I go!", and do a course correction or whatever. That's how it is for me. It's a lot of discovery with a goal in mind.
Now I have come up with outlines. I've done an outline ... for me, there are two kinds of outlines. And they're both lies. All outlines are lies. Some of them are lies you tell other people, some of them are lies you tell yourself. I've done it. I did an outline for Everfair, for instance. I did an outline for Kinning, the sequel that I'm working on, to Everfair. And I sold Everfair based on that outline. It was a lie. It was not what happened. The other kind of outline is something that you do... It's not so much a lie. You do it after you've written something, you can outline it and see, "Well, what did I do?" And who's going where, and what's happening with this thread ...
KAC: Structural analysis.
NS: Yes; and that still is not so much the truth, because you can change it then, right? You know what to change.
KAC: I've heard other discovery writers or "pantsers" describe their process as "unearthing a fossilized skeleton", or "planting a tree in a garden". There's a lot of different metaphors that people use to get at that process, and understand it. So, yeah, that works well. Do you have a regular writing routine?
NS: Yes, yes, I do, especially these days. I write in the afternoons, which I think puts me in a minority. Most people write either very early in the morning, or some of them late at night. But I write in the middle of the day, and I trace that to going to Clarion West, where we had classes in the morning. So the afternoon was when I had large chunks of time to write, and then in the evening I would interact socially with other people. So these days I write in these meetings and I write in the afternoon. Very, very rarely will I do anything other than write. Sometimes I will look at emails or prepare for a class or something, but it's almost always writing. The routine is “hurry up and get writing”. Get some food ready so that I don't have to interrupt the process, and write for forty-five minutes, break for fifteen. Sort of a Pomodoro kind of thing.
KAC: And then do you get up and move around during those fifteen minutes?
NS: Yes. And I get up and move around during the forty-five. Also, I can't sit for forty-five minutes. That is painful. Someday I hope to do a class called "writing while fidgeting." Because I'll get up. I'll go to the bathroom. Walk around. This is something that I think people who are new to having a disability need to take in. You are writing whether you are putting words on the page or not. You are writing if you are standing at your bed, smoothing the pillows out and thinking, "Well, why would the baron say that?" The process of writing is something that takes place, basically, in your mind. And your mind is a little portable. I may be sitting during that forty-five minutes, I may be sitting for thirty of it, but I'll be getting up and moving around, and then I'll come back and I'll type a sentence or two. And then I'll get up and let my cat in, and then I'll come back and write a couple more sentences and change a word or two in the previous sentence, "No, that's how it goes."
KAC: Do you switch devices, depending on what position you want to be in? Like, do you ever use your smartphone?
NS: I have not used my phone for writing much, but I think that that's a great way to go. Because I mean, it has its own limitations, right? The number of sentences that you can see on the screen at a time, depending on your phone, and you know the font size that you're comfortable with, and what you do with it afterwards, where do you save it? Where do you store it? Do you send it to yourself? That kind of stuff. But I've used it for a few things, including writing songs.
KAC: What accommodations or tools do you use that disabled writers might enjoy knowing about?
NS: I think I've covered that pretty much. I recommend looking into dagga, or lion's tail. The thing about that is it does get you high, but the high only lasts for, like, maybe ninety minutes. So that compares favorably to being high for, like, four hours from ingesting marijuana. The thing is, though, that you have to smoke it. You can't eat it. It's incredibly bitter. I recommend that. I recommend getting a larger screen for people who are low-vision but still sighted. Um, what else do I use?
KAC: Well, it sounds like you alternate between your phone and your PC.
NS: But mostly the PC. Because, like I say, I get up, I move around and then come back to it.
KAC: You talked about Pomodoro. Do you use Pomodoro?
NS: I do not, but I know the method, and I advocate people using it. I'm fine without actually having the manufactured timer and all that kind of stuff. I've more or less adopted the method without paying for it.
KAC: Well, let's go to the next question then. I often feel like common writing advice is geared towards abled writers, and that some of that advice can be a really bad fit for disabled writers. Do you ever hear writing advice and think, "that's just not going to work with this disability?"
NS: I have not made that connection, but I remember when I was looking over your questions earlier, you mentioned writing every day as a piece of advice that does not apply to disabled people, and I think it doesn't apply to abled people that universally as well. Because I do write almost every day now at this point. But for a long time, I didn't. I would schedule writing time on my calendar, but there would be days when I was traveling, for instance, where writing was, the way that I liked to do it, was not possible. And I can see how ... the days when you know, I'm just I'm suffering too much to focus. Those are not writing at the computer days, but I will just say again, writing is more than putting the words on the page. Sometimes it's having a dream. You could be writing in your sleep. And I am also a big advocate of not having to be conscious about everything going on in the writing process. So it's almost universal. I have found very few writers of any ability of any community that will not say, "I write this, and then I sleep, and the next day I look at it again." And so, my advice to other writers who are experiencing some form of disability is just to trust that if you are a writer, writing is going on, whether you know it or not. And if you're lying there in pain, just know that although much of you is preoccupied with what's going on medically, or if you're just really, really ready to escape pain, or to escape depression by killing yourself, just know that there is some writing going on in you, because you're a writer.
KAC: Yeah, this is a thing that I think will be really meaningful to a lot of disabled writers because I always hear "I'm the writer who is miserable because I'm not writing right now." You know, like 'I haven't actually put words on paper in a month, in a year. Am I still a writer? Do I still count?'
How do you get back on the horse after a period of recovering from surgery or something of that nature? Do you have tips on how to get back into the flow of riding after a period of not being able to work?
NS: Actually, I have not had extended periods like that. The most I've had is maybe a week, ten days. So I don't think I qualify to give advice on that.
KAC: So, I loved the steampunk prosthetic arms that you invented for the amputees in Everfair. So, if you were a steampunk cyborg, which attachment would you want the most?
NS: Just one?
KAC: You can pick more than one.
NS: Obviously, I'm focusing on sight right now, but I would want something where I could combine perception and manipulation on multiple levels. As in, I could have telescope eyes and microscope eyes. I could have strength-multiplying hands, and hands that can manipulate on a near microscopic level. That's what I would choose. What about you? Wait, I want to hear what you would do.
KAC: Oh, mine? So what I really want is a heads-up display that connects to my brain somehow, that would somehow remind me who the person I'm talking to is, what their name is, their pronouns, and maybe a fact about where I met them or what we last talked about. Because, I have partial face blindness, and I have cognitive impairment issues around memory. So sometimes it's acutely distressing to be speaking to someone, and I know I know them. I can remember the last conversation we had, but I don't remember their name, and I can't tell their face apart very well, so I feel like that would be an accommodation that would be transformative for my life. But I could see how it would also be really invasive of people's privacy.
NS: Oh yeah, you would have to be able to turn it on and off.
KAC: Yeah, or maybe people could opt in, like I want to upload my data to this system so that other people using these glasses or implants will always see my name floating in the air next to my face. That's what I would love.
NS: Yeah, like filters.
KAC: Yeah, and maybe even like a virtual personal assistant like in the Halo video games. There is Cortana talking in your ear and telling you about your environment.
NS: There's Cortana on my laptop, too.
KAC: Yeah, I would like to have a Cortana in my head. That would be great.
Do you see disabled folk as part of our future and our futurisms? How does disability intersect with science fiction?
NS: So, that is a really interesting intersection to look at because I can see all sorts of changes in the future regarding what we consider a disability. Many things that are not consider disabilities now, like breathing oxygen. Those could become disabilities, right? And at the same time, things that we consider disabilities such as paraplegic conditions could be perfectly fine in a non-gravity environment, for instance. And it could actually be adaptive rather than maladaptive. I definitely see disability in the future in so many different ways, at least—as I'm sitting here just thinking—at least three ways, the way of things that are now not considered disabilities becoming disabilities, things that are considered disabilities no longer being disabilities, and also new technology and new living conditions spotlighting things that were never ... well, actually creating conditions that are new disabilities. For instance, I think that probably the closest thing we have to ... a story along those lines is "The Morning and the Evening the Night" by Octavia Butler, where there is a new disease generated by a cure for cancer. So there's a genetic disability passed along that has both physical and neurological and behavioral expressions. And it's because of a technological advance. Have you read that story?
KAC: I have, it's been a while, but I really enjoyed it.
NS: Yeah. So again, that kind of thing, I think, is another way that the future and disability will intersect.
KAC: Yeah. Are you familiar with, or are you watching, The Expanse?
NS: You know, I tried to watch it because Daniel Abraham, one of the authors of the series, is a friend of mine. I couldn't do it.
KAC: Well, I asked because there's this really interesting theme or idea that's kind of running through it, that people who live out in the asteroid belt or on Mars, have grown up in different gravity. So their bodies are different shapes and have different bone densities. And those conditions are not disabling in their environments. They're not impaired in their own environments. But when they come back to Earth, they are impaired and disabled. So, I really like this idea of disability as a product of your environment, not a defect in your body.
NS: Yeah, that's another one. I mean, you know, as I said only three, in like, three minutes. I'm sure there are great things to be learned about looking at that intersection.
KAC: Yeah. So I want to move to publishing professionals, if that's all right. What advice would you offer to publishing professionals on finding and working with own voices disabled writers?
NS: That is a hard one. It's something that I have done myself as an editor, but in the very crudest fashion. So what I do when I'm editing something is I keep a spreadsheet in which I have different categories for the work and the creator that I'm looking at. And I don't try to fill a quota of how many people with visual impairment, or that kind of thing. How many people from the Gulf states? But I keep track of what I have come up with. So, rather than finding, I'm more focused on recording and tracking what I come up with. As far as finding, I would say read widely, engage widely. Because if you're just focused on something, then it can be in danger of becoming a fetish for you, which we don't want either. But there are workshops and learning programs that are inclusive. And, paying attention to those probably helps. I mean, I know it's helped me. I know that there's a Facebook group for writing the other, which is not disability focused, but is disability inclusive. And I would say, there's the same sort of thing going on with Clarion West, so probably with Clarion as well. Just look for variety and inclusion.
KAC: Thank you. What about accessibility? I mean, that can be a big issue for disabled writers who are going to conventions or events, or who want to go to workshops. Sometimes even when you're getting an award, at an award ceremony, accessibility becomes an issue. What would you like to see cons and other spaces doing to help disabled folk attend safely?
NS: Paying attention and modelling. I think that the best model I've seen of this, frankly, is WisCon. I don't know, have you attended WisCon?
NS: It's not perfect. But there's a real effort, a real intention to be inclusive of people with all sorts of disabilities. There's a safer disabled people space. There are rooms where you can just pull back from what can be overstimulating in terms of being at a convention. I mean, I still see things. For instance, there was one year I was part of the opening ceremonies, and there was no way—there was no ramp to access the stage. And this was not the fault necessarily of anybody, but it was something that apparently was a lower priority. The ConCom and the hotel liaison had made a point of mentioning this need. But the hotel had put it lower on the agenda, and it just fell off. Fortunately, we who were arranging the ceremony, the opening ceremonies, were like, "This is not going to work." I don't know that adding another layer like a disability advocate helps, because then you run into the problem of committees fighting each other and that kind of stuff. But, having the intention and following through on it. And I think that what empowered us was that we knew that this was a value of the community behind the convention. We knew that even though it wasn't necessarily part of our remit, "Get a ramp to the stage!", we knew that it was important to the community and that we would be backed up by insisting on it.
KAC: Thank you. So, I want to talk about connecting with other disabled people, particularly at conventions like this. But outside of a medical context, what are the best ways you found to meet other disabled authors, artists, and friends?
NS: I know that there are things, I've seen a sign at my ophthalmologist for discussion groups, people who get together because they're low vision or something. I've never participated in anything like that. But as I was saying in another part of our interview, I found that the people that I am gravitating towards as authors are all people who share this commonality with me in some way. So the only advice I have is to find people that you like hanging out with and bring up the subject, because not everybody is out about their disabilities, right? So you would miss those people if you were going for discussion groups that were official and supported by your doctor or whatever. So hang out with people that you like and bring up disability. And you may be surprised at who you find that is a fellow traveler.
KAC: That's lovely. Well, we're at the last question, which is just, is there anything else you'd like to talk about or share with anyone reading this interview?
NS: The one piece of advice that I have for writers with a disability is to be flexible. To expect their situations and their needs and their abilities to change. With new regimens, with a new doctor, with a new living situation, whatever. And to fold that into your writing practice.
KAC: Thank you, that’s very useful. Well, thank you so much for the interview, and all the advice! Readers, Nisi’s website is http://www.nisishawl.com/. You can find Nisi’s novel Everfair at your local bookstore or online bookseller! You can find their short fiction in multiple magazines and anthologies, and also in their collections Filter House, A Primer on Nisi Shawl, and Talk Like a Man.
Authors' Note: Readers who would like to join in this conversation on social media, please feel free to do so with the #WritingWhileDisabled hashtag! We'd love to hear about your experiences writing while disabled, especially your favorite accommodations and the methods you rely on to get your writing done as disabled folx. The relevant twitter handles are @KristyAnneCox, @NisiShawl, and @strangehorizons.