Your Hosts: Mary Robinette, C.L. Polk, Fran Wilde, and Howard Tayler 

This is the “talking about how to talk about” talk. We begin by reviewing the difference between the medical model and the social model of disability.

Liner Notes: This TikTok provides a nice explanation of the medical and social models of disability. There’s also this essay, “The Linguistics of Disability” over at Fireside Fiction.

Credits: This episode was recorded by Daniel Thompson, and mastered by Alex Jackson.

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Transcript

As transcribed by Mike Barker

Key points: Two models of disability, the medical model, where disability needs to be fixed, and the social model, where society and the environment need to change. When someone isn’t comfortable with the chairs at the table, do you fix the chair or the person? Empathy, putting yourself in the other person’s shoes, or sympathy, making yourself feel a little better for being such a nice person? Empathy asks how can I help you. Empathy is about listening. Why don’t we make spaces accessible? 

[Season 17, Episode 47]

[Mary Robinette] This is Writing Excuses, The Linguistics of Disability.

[Chelsea] 15 minutes long.

[Fran] Because you’re in a hurry.

[Howard] And we’re not that smart.

[Mary Robinette] I’m Mary Robinette.

[Chelsea] I’m Chelsea.

[Fran] I’m Fran.

[Howard] And I’m Howard.

[Mary Robinette] Today, we’re going to be talking about how to talk about disability. There’s a couple of different models out there in the world. We’ve got another essay for you to read as a supplement to this, which is also The Linguistics of Disability, Or Empathy and Sympathy, that Fran has written. I highly recommend that you listen to that as a supplement to this episode. But let’s first talk about the idea of a medical model versus a social model when talking about disability. So, medical model means that when you’re talking about the disability, that the disability is something to be fixed, it is an illness, it is something that needs to be repaired or corrected. This comes from the medical community. The social model of disability holds that the problem is actually the way society is structured. That society itself is what disables people. For instance, someone who is a chair user, totally fine on flat surfaces, but if you have something that has a ton of stairs, the stairs are the problem, it’s not the chair, because there’s definitely ways to navigate without that, without stairs. So the idea is that you have two different ways to do that, and one of them basically says this person is less than human and needs to be made human. The other says this person is totally human, but maybe we should build our buildings in other ways. Does anyone want to, like, talk about some ways that that reflects in the fiction that we see for that we write, some failure modes that we can sometimes run across in fiction?

[Fran] To tie this to the previous episode, especially the body horror episode, the problem that needs to be fixed, the thing that is too scary to be embodied except in horror is kind of at the extreme end of what we’re talking about, and what we were talking about. When we were asking in the previous episode for people to shift perspective and think about what it’s like, to be inside and still have agency and still have choices, we’re talking about shifting it to a more social model of horror, actually.

[Howard] I think in terms of linguistics, the… When we wrote the second edition of Xtreme Dungeon Mastery, we talked about ways to include everybody at the table. Sometimes, coming back to the word chair, sometimes the chairs at the table are not one-size-fits-all. Somebody needs a special chair. We did a little role-play in the book, where someone says, “Hey, I… That chair doesn’t work for me. I’m sorry to be a problem.” The host says, “Oh, you’re not the problem, the chair is the problem. We can fix the chair, we don’t need to fix you.” I come back to that all the time, when someone apologizes, “Oh, I’m sorry, I’m not good at stairs,” “Oh, I’m sorry, I need to stop and take a breath.” I’m sorry, you’re not the problem. The problem is this context that we’ve created that renders you unable to participate at the level that the rest of us are participating. So let us, as a group, try and change that. I’m circling back to that, not because it’s a fiction, but because in my own head by making that change in the way that I talk, in the way that I write about myself, I am positioning myself hopefully, fingers crossed, to write better about it when I put it in my fiction.

[Mary Robinette] There’s a great TikTok that I recently saw by Jeremy Andrew Davis, which were going to link to in the liner notes. He explains it by saying when Superman comes here, he has a different set of abilities than humans do. He has super abilities. But if you imagine that… If you flip things and adjust canon a little bit, and humans have to go to Krypton, and everyone on Krypton has Superman levels of ability, then you have things like people are able to stop a locomotive. So you go to try to pull a door open, and as a human, you can’t pull the door open because it’s designed for someone who can move something with a thousand pounds of force. Leap over buildings with a single bound, there are no stairs because everybody just jumps up. They’re like, “Well, why don’t you just jump up? What do you mean, you were late to this meeting?” That’s the kind of thing that you’re thinking about with the social model is that the person’s normal is their normal and they are trying to exist in a world that is designed for someone else’s normal.

[Fran] I think absolutely that. And stemming from that, that existing in the world where that is normal, there’s a really great essay up at the SFWA website where Valerie Valdez talks about why writing in second person is important for marginalized people. This is particularly true for disability narratives, including my own. When I wrote Clearly Lettered in a Mostly Steady Hand, it’s narrated by a very angry Fiji mermaid in the middle of a cabinet of curiosities. But she’s narrating for the audience an experience where second person’s invoked and the reader loses agency over time. That experience of… That particular use of second person and loss of agency is something that I wanted to invoke as sort of an empathetic reaction to what it feels like to be disabled, in certain ways. That was sort of shifting gears a little bit on people, and it made a lot of people, including a couple reviewers, really uncomfortable. I kind of am okay with that. I’m actually very okay with that. In part, because that’s the difference between empathy and sympathy. Sympathy is something that I’m doing to make myself feel better, a little bit, and empathy is something that is much more about the person’s experience that is having the experience.

[Howard] Empathy is inherently uncomfortable. I hate it a lot. When the people around me hurt, I hurt too.

[Fran] Yes.

[Howard] What a stupid sense. I don’t want it.

[Chuckles]

[Chelsea] But you do. You do want it.

[Howard] I know I do want it.

[Fran] Why do we want empathy, Chelsea?

[Chelsea] We want empathy so that we know… Like, I rely on my sense of empathy to understand… Okay, everybody’s really happy. I feel their happiness too, and that everything is good. But there’s also, like, bored and frustrated. I feel that, too. So, that’s like a cue. It’s like, what do you need?

[Fran] Yes.

[Chelsea] At this point. It’s like, okay, I get that you’re feeling frustrated here. How can I help you? If you don’t have that, then you just continue to sail on with your whatever. Then you’re a jerk.

[Howard] A world with no empathy would be like driving at night and nobody’s cars had headlights or taillights.

[Fran] If you do proceed without empathy, if you proceed with something else, that’s when you find your… Let’s say, if your character has no empathy, but they want to express some sort of concern or connection with a person who is going through a thing, that’s when things like, “I think you’re such an inspiration,” or “You must be so strong,” start to come out of people’s mouths. That, Chelsea, what you said about how you are feeling about this, what can I do to help you, puts that agency back in the hands of the person who needs it, rather than sort of getting the kudos, gold star stickers, for being someone who’s forcing an opinion on the person who doesn’t need the opinion.

[Mary Robinette] Well, something that you said in your essay, Fran, when you were talking about the “You must be so strong,” is that it’s a distancing thing.

[Fran] Yup.

[Mary Robinette] I had not thought about it in that way, but it is about… When you’re approaching things from that angle, it is about reframing them in a way that you are comfortable engaging with them, rather than the ways in which the person needs you to engage, and that empathy is much more about listening. It’s like that is such a good simple frame, for, like, evaluating my own choices about things that I say in response to people.

[Mary Robinette] Shall we take a moment to pause for the book of the week? Then, Chelsea, I want to see what it was that you clearly had a thought, and I want to see what that was when we come back. So, our book of the week is Being Seen by Elsa Sjunneson. This book, Elsa is a deaf blind activist. This is a memoir series of essays. She’s… She fences, she writes, she does all of these things that you would think… In a book, you’d be like, “Oh, really?” But this is her real life. This book has been… It’s just recently won a major award in Washington state, it was nominated for a Hugo, it’s been up for major awards all over the place. She just had a documentary, a short documentary about her life, and covers some of the ground that is in this book. It is wonderful. Highly recommended. Being Seen by Elsa Sjunneson.

[Mary Robinette] All right. So, coming back, Chelsea, what’s on your mind there?

[Chelsea] Well, I just… The wheels are kind of turning, right? Because I’m always thinking about the social model of disability. Because a lot of times, like our physical spaces and our environments are not designed for everyone. It bothers me. Because, before I moved in here, I lived in a building that was like accessible. All public areas were designed with accessibility in mind. This was the point that really drilled it home to me. Accessible spaces are accessible to everyone. They make using this space easier for everyone. So why don’t we do it? Why do we not do it? So I’m always thinking about this now. I’m always thinking about this when I’m doing world building and design. I’m like, very deliberately thinking about, like, how good is the design of this environment. When I say good, I mean how many people can just use it without thinking about it or having to do anything special.

[Howard] The reason we don’t do it is that the people doing the design don’t have needs that stray very far from what they perceive the baseline to be. It’s the… What was the show? The IT crowd or something, where the… All the motion detectors that keep the lights on won’t detect people with brown skin. So you had to have a white person walk into the room periodically to keep your lights on. Why? Because we’re not testing these things with the full range of people that are going to be using them. Because the designers are not comprised of a demographic that fits who’s using it.

[Mary Robinette] Well, the other thing that we talk about is, like, people… One of the things that happens is that people will designed for the one… People that they see around them. If you are designing spaces that people cannot access, then, of course, you are not going to see examples. It’s like, well, how often do we really get people who have problems with stairs coming here? It’s like, well, we’d get that more often if you didn’t have stairs.

[Howard] They stopped coming.

[Chelsea] The answer to the question is built right in. One of my more local examples, the apartment that I live in is directly in front of a separated bike lane. It’s one lane across wide, they took an entire lane out of the road and turned it into a bike lane. It’s two way, and it’s actual. There are like clear directions as to how you cross intersections when you’re using the bike lane. Notice that I don’t say when you’re a cyclist. Because what happened was, when the downtown cycle network started introducing these things so that we get across downtown using these safe bike lanes, all of a sudden wheelchair users and motorized scooter users came out of the woodwork. There’s always somebody on the roll in the bike lane. It’s so great.

[Mary Robinette] Yeah. I saw that.

[Chelsea] Because sidewalks suck.

[Fran] Sidewalks suck.

[Mary Robinette] Yeah. Saw that in…

[Howard] Well, when we… When we threw a pandemic and the whole world came, we started doing conventions and meet ups and things remotely via Zoom. We met people we had never seen before. People who have always been with us, but have never been with us, because they couldn’t attend in person, because they couldn’t commute. They couldn’t, for whatever reason, they couldn’t get there before, but now that they can get there with a camera and a microphone, they’re part of the community again. Boy, howdy. If we learn nothing else from the pandemic except that, I will count myself happy, because that’s so important to us as a society.

[Fran] But did we learn it? Did we learn it, really?

[Garbled]

[Howard] I want to think some of us did.

[Fran] No, because when the pandemic is over, and we’re not like… We’re doing it in person events. I mean, me personally, I’m so glad to see people’s faces, I’m so glad to be in their visible spaces. But I kind of also wish that I had like… Kind of like an iPad strapped to my chest so that I could bring somebody who couldn’t come visibly.

[Mary Robinette] Yep.

[Fran] Yep.

[Chelsea] With me.

[Mary Robinette] Yeah. This is, having been doing some con running during this year, the big barrier to that is actually the Internet because… Specifically, the amount of money hotels want to charge for Wi-Fi. To do, just as an example, Dis Con 3, we had to spend $40,000 just on Internet, which a smaller con can’t do. So, all of these things are complicated, but most of them are complicated because someone has decided this is a way that they can make money. Also, that it is a problem that doesn’t apply to them. So, let me wrap this up with a science fictional example that is also a real world example. When the astronaut program started, astronauts had to have 2020 vision, because all of the requirements were based on being a test pilot. Then a funny thing happened. In the 2000s, when we started doing long-duration missions, astronauts eyes changed on orbit, and they started to require glasses. They no longer had 2020 vision, and also, the astronaut corps started to age, and become middle-aged, people in their 50s, and they suddenly needed bifocals. They changed the requirements to become an astronaut, because it turns out that you don’t need 2020 vision to function in space. But really what it turns out is that the people who were making the decisions suddenly had the thing that they had considered previously to be a disability. So when you are thinking about your own fiction, you need to be thinking about it from a couple of different places. As we’ve talked about, be thinking about it from an empathy point of view. You’re thinking about it from the social model point of view.

[Mary Robinette] That brings us around to our homework. Chelsea, I think you have the homework for us. Right?

[Chelsea] I do. I do. Now, if you go all the way back to episode two, we had the homework that was write a scene with two characters. One with a disability and one without. Write it from each character’s POV, paying particular attention to setting. What I want you to do is I want you to write as an insider versus writing as an outsider, or writing a medical model approach to the setting versus writing a social model setting. Take that setting and the person with the disability and the person without the disability, and write those spaces again. See what happens when the world building shift changes.

[Fran] I love that assignment so much.

[Mary Robinette] Yeah. It’ll be a lot of fun. This has been Writing Excuses. You are out of excuses. Now go write.