Episode 186A: Disability and Fandom: Part 1
In the first installment of the “Disability and Fandom” double episode, Flourish and Elizabeth get the perspectives of a wide range of disabled fans, including conversations with Rebecca Milton and Joan Miller and voicemails/letters from Dr. Paul D. C. Bones, buffer-overrun, Taylor, Wheelchairidan, Hannah, and Sandy. Topics discussed include Mad studies and depictions of disability in video games and the horror genre, how ADHD can shape fannish obsessions, and the difficulties disabled cosplayers and con-goers face with both staff and fellow fans.
Show Notes
[00:00:00] As always, our intro music is “Awel” by stefsax, used under a CC BY 3.0 license.
[00:00:55] The original race and fandom episodes: Part A/1 and Part B/2. And continuing our glorious naming tradition, the race and fandom revisited episodes in 2020: Part A/1 and Part B/2.
[00:03:21] Rebecca is on Twitter and Tumblr, and you can find her work at recklessenough.com.
[00:03:39] Our interstitial music throughout is “Thoughtful” by Lee Rosevere, also used under a CC BY 3.0 license.
[00:08:54] Mad Studies texts that Rebecca recommends:
Mad Matters: A Critical Reader in Canadian Mad Studies (2013)
Searching For A Rose Garden: Challenging Psychiatry, Fostering Mad Studies (2016)
[00:09:34] Small correction: the DSM—short for The Diagnostic and Statistical Manual of Mental Disorders—actually defines Prolonged Grief Disorder as grieving for one year in adults, six months in children, which, while longer than three months, is still obviously ridiculous.
[00:15:16] Rebecca’s call for Madness fanfic with many links in the replies! The Black Sails fic Elizabeth references is kvikindi’s “Unaccommodated Man.”
[00:19:35] The game Rebecca is discussing is “Hellblade: Senua’s Sacrifice,” and the creators’ development diaries include the process of getting feedback from psychiatric service users.
[00:22:54] The exact quote from one of the service users—Kathy Jones—was: “There’s nothing tokenistic about the work we've put in.”
[00:24:20] Rebecca shared a few articles:
On kinds of Madness represented in video games (she notes: “I disagree with the inclusion of ‘homicidal maniac’ as mentioned in the discussion, but it’s telling that those were even included.”)
[00:25:03] “Summon the Lambs to Slaughter” by La Guera, and one example of the subsequent media coverage (CW for ableist language and framing in the article).
[00:31:00] Rebecca wanted us to note that she normally tries to say “non-disabled” rather than “abled” or “able-bodied,” as she does here—and while she personally prefers the former, she also notes that many people are happy using the latter.
[00:32:12] Ebony Elizabeth Thomas’s book is The Dark Fantastic, which she most recently discussed with us in 2020.
[00:34:45] You can find Dr. Paul D. C. Bones on Twitter, and he’s also the author of the book Redefining Disability.
[00:38:39]
[00:42:57] buffer-overrun was in fact one of our VERY FIRST COMMENTERS!
[00:49:39]
[00:53:52] You can find Joan on Twitter and Instagram.
[00:56:16] Joan’s article “Raceplay: Whiteness and Erasure in Cross-Racial Cosplay” has been published in Fandom, Now in Color, the anthology on race and fandom edited by Dr. Rukmini Pande.
[01:04:52] Joan as GLaDOS from “Portal”—the photo that’s also the cover of this episode!
[01:07:05] Frantz Fanon’s Black Skin, White Masks
[01:15:31]
[01:27:15] You can find Hannah on Twitter and Instagram.
[01:27:55] Hannah’s Six of Crows cosplay!
And the Black Sails zine, Freedom in the Dark, is free to download; Hannah’s essay, “For It Cannot Be Borne if You Cannot Stand: Disability in Black Sails” is on page 96.
[01:33:46] You can find Sandy on Twitter, AO3, and Dreamwidth.
[01:34:47] The WisCon accessibility policy, and the Geek Feminism Wiki.
[01:36:44] Susan Sontag’s Illness as Metaphor
[01:36:50] The community Sandy mods: access-fandom on Dreamwidth.
Transcript
[Intro music]
Flourish Klink: Hi, Elizabeth!
Elizabeth Minkel: Hi, Flourish.
FK: And welcome to Fansplaining, the podcast by, for, and about fandom!
ELM: This is Episode #186A, “Disability and Fandom: Part 1.”
FK: My soul dies a little bit more every time we have an episode that uses that “A: [ELM laughs] Part 1” thing, but we have, we are apparently committed to the bit.
ELM: [laughing] So for context, in 2016 we did a pair of race and fandom episodes—I think it was originally supposed to just be one—we got so many volunteers that we split it in two. And uh, we decided that would be a really cool naming convention, [FK laughs] if we could do A and B and 1 and 2, and two colons per title, um…
FK: Were we drunk? [ELM laughs] I don’t remember, it was many years ago.
ELM: [overlapping] Nope, stone cold sober, I remember. And so then when we did a followup race and fandom episode, pair of episodes, in 2020, we did the same. So we figured, with disability and fandom, which we got a ton of volunteers for, we should follow the same beautiful, majestic, maximalist naming convention.
FK: Great. So, if you don’t remember any of those old episodes, we are doing the same format. So we have four anchor guests, with whom we have, you know, slightly more lengthy interviews, two per episode, so there’ll be two in this episode and two in Part…B/2. [laughs]
ELM: [overlapping] Part B: Part 2, yeah, B/2. Yeah.
FK: And then around those guests we’ve also got a lot of other people, some of whom have given us voicemails, some of whom have written in, and we’ve sort of arranged those in…ways that felt good to us.
ELM: You don’t have to say that so weirdly. So sometimes with letters we try to mix them up, kinda make it feel really shuffley, to have things that aren’t too similar next to each other, especially in the AMAs, right, it’s like, “Oh, no, that’s too similar.”
FK: Yeah.
ELM: And then sometimes we arrange them, if we feel like they’re in conversation with each other we’ll put them back to back, right? And that is what you—you are the letter arranger usually, and that’s what you’ve done here, and I think that you’ve made the right choice.
FK: Yeah, yeah.
ELM: Some of these are, these are in conversation with each other, inadvertently.
FK: Cool. So that’s what’s going on with that.
ELM: So one thing before we start. So the subject of this, disability and fandom. If you didn’t hear or see any of our calls for participants, basically I just want to say this up front, what we said in terms of what “disability” means, or “disabled fans,” is totally about self-definition. Because I know from conversations within disabled communities, you know, because there are a lot of overlapping ones, that it varies about how people define…you know, things like mental health or neuroatypicality or whatever, right? And so, basically we just said self-definitions. So all of our participants are self-ID'd as disabled fans, so I just wanted to give that context to set up.
FK: Wise context to give. OK. So, shall we start off with our first anchor guest?
ELM: Yes. So our first guest is Rebecca Milton. She’s a PhD student at the University of Kent in the English Department, I believe with a focus on the medical humanities.
FK: Awesome, let’s call her up!
ELM: All right, let’s do it!
[Interstitial music]
FK: All right, let’s welcome Rebecca! Hey, Rebecca!
Rebecca Milton: Hi!
ELM: Thanks so much for coming on!
RM: Oh, thank you for having me.
ELM: OK. Normal first question first, I’m wondering if you could tell us a little bit about your fandom background, and how that led to the academic work that you do about fandom, particularly fandom and disability.
RM: Yeah, so I think the really interesting thing is that my background with fandom is really entangled with my background with disability. I got into fandom primarily through fanfiction about 25 years ago, [laughs] when I was, like, 10 or 11. I was lucky enough to have my own computer, which was super rare back then. And it meant that I was exploring the internet, and through that I discovered the Harry Potter fandom, unfortunately, but fortunately. [FK laughs]
ELM: Look, we’re right there with you, don’t worry. [laughs]
FK: Yep.
RM: Yeah. [laughs] And I ended up spending a lot of time, I’d basically lived in the FictionAlley chatroom [FK laughs] for several years, and then all the forums, you know, I was captain of one of the ship threads we had, and all of that sort of thing.
FK: [overlapping] Yeaaah.
ELM: Are you gonna reveal which ship it was?
RM: I think I was captain of the Remus/Hermione ship, [FK laughs] but I can’t remember for sure. [laughs]
ELM: [overlapping] Wooow, wow, so you’re technically like, our enemy, because Flourish was Snape/Hermione and I was Remus/Sirius. So.
RM: [overlapping] I was also in that ship.
FK: [overlapping] Yeah, I remember you being in that ship! [all laugh]
RM: Um…but, so it became this place I spent a load of time, which was really important, because I spent most of my childhood experiencing very traumatic levels of bullying. And that’s the sort of impetus and foundation for the psychosocial disability that I have. And that started progressively getting a lot worse from when I was sort of 14 to 18, and I ended up having a breakdown.
And all through this time, I was writing fanfiction, reading fanfiction, doing forums-based roleplaying on LiveJournal, and I had this place I could escape to. And I think that sort of captures my experience of fandom as somewhere you go to to escape and be safe. Obviously it’s not that for everyone, and it’s not always been that, there’s definitely been points where it’s been negative for me as well, and in the ensuing two decades I’ve had time away from fandom, like we all do, but I always end up coming back to it, and it’s always a comfort for me.
And I think I notice that especially because I had a bit of a break, and then in 2018 returned to fandom, and that’s around the time I started developing my physical disability, and fandom just became more and more important to me, and I noticed I was writing more fanfiction, I was using it more as an escape. And that has all tumbled into me doing a Master’s degree that’s led to a PhD, which I’ve then brought fanfiction into. Which I was very nervous about doing, because when you go into an English department of a university and say, “Hello, I’d like to write about fanfiction in my PhD,” you worry what you’re gonna get in response. [laughs]
ELM: What exactly did you write about?
RM: So, my research is about the embodied experience of Madness. I’m using the term “Madness” as a reclaimed word, so a capital M. I work from a Mad studies framework, which I can go into later, but I’m looking at how interactive and immersive media transmits the embodied experience of being Mad. So not just showing you someone who is experiencing psychosis on a TV show, or a film, or in a book, but actually giving you an experience where you can have some of that feeling and have some of that experience.
Obviously it’s not complete, because you can’t turn yourself into another person, but to use the example of video games, you often are invited into a very immersive experience. You can be given the effect of auditory hallucinations, for example, via different sound methods, and that’s something I’m looking at across different media types. So not just video games, but also fanfiction, roleplaying, and interactive and visual novels. Which is an interesting cluster [laughs] of things.
FK: [overlapping] Yeah!
RM: I remain slightly surprised that they accepted my PhD proposal. [all laugh] I’m not in a university that has a fan studies department or anything like that, I’m actually in a field called the medical humanities, which is a kind of third space that brings lots of disciplines together to look at medicine and health using skills from the humanities and social sciences and so on. It’s a very transdisciplinary space, much like fan studies is.
ELM: Can you—so, Mad studies, can you talk about that a little bit? I’m really curious.
RM: Yeah, definitely. So, Mad studies is kind of an offshoot of disability studies. There is a tendency within disability studies for mental or psychosocial disability to…get a bit forgotten about in the same way that disability studies is often forgotten about within other, wider fields.
Mad studies works in two ways. It brings in the experiences of Mad people to the forefront, but very specifically not doing it in a psychiatric way, so all of the diagnostic systems—I’ll use the DSM as an example because it’s the main one—I believe, and other people within Mad studies believe, that that is detrimental. The extent to which people are symptomized and reduced to a list of tick boxes, rather than taking their whole experience, rather than taking in things like if they’re living in poverty, if they’re homeless, if they are a person of color, you know, if they’ve got other marginalizations that are then affecting their experience.
Instead you get things in the DSM that are decided basically because one powerful white man, who was on the funding committee steering what was going to be in the next edition, has said “Oh no actually, I think we should put that one in that box.” And it can be that silly. There is, in the current edition of the DSM, there is “grief disorder,” if you are grieving for more than three months, you are now pathologized.
ELM: But if you just do like, 89 days, it’s like, [FK and RM laugh] fine, that’s normal, but uh…
RM: [overlapping] Yeah, yeah, if you meet the cutoff…
FK: [overlapping] How does that even function? Like, I’m thinking about, there’s religious traditions in which grief is like, consciously extended for a year or more, so is every Jewish person pathologized because they have a year’s worth of grief? Like, what? How does that work?
RM: I don’t think it does, I think that’s the whole point. [all laugh] You know, you can take any person with any experience of Madness and you can diagnose them with ten different things on the DSM, because it all crosses over so much. It’s not that I don’t think the labels that you can get from it are important, it is very important to many people to be able to say, “I have this diagnosis or this.” I am autistic, for example, and I’m going through the process of becoming diagnosed, because it’s important to me to have that label.
So that’s one half of Mad studies, is the anti-psychiatry side. The other half is the psychiatric survivor side, which is bringing in the experience of Mad people who suffered iatrogenic harm, so for example, being sectioned against their will, being abused whilst under sectioning. You don’t have to look very hard to find lots of very horrible stories about the experience of people with Madness, both in the present and historically. Especially women and people of color, and anyone who comes with another marginalization.
ELM: Should we say, sectioned—I think we would use the word “institutionalized.”
RM: Yes, yes. You would.
ELM: [overlapping] I don’t know if we say, I don’t think Americans say “sectioned,” do we?
FK: I don’t know whether we do or not. [laughs]
RM: I think it’s generally a UK term, yeah. [laughs]
ELM: Right, right. That’s interesting. But is it also about the humanities, so would then, also you’re using this lens to look at works of art?
RM: Yes, yeah, so think of it as, it’s the same with disability studies. Disability studies looks at so many different things. It can look at the social justice side of things, and the legal side of the state of the world for Mad people or disabled people, Mad studies does that. It does, it’s very ingrained in activist work, and that is something that is through the core of the work I’m doing as well, is saying “Let’s work against the misrepresentation of people with Madness.” But there’s also, you know, studying—like in the humanities—representations of disabled people in media, or cultural constructs of disability, because we have quite a lot of cultural ideas around what disability is and isn’t, especially around what Madness is and isn’t.
FK: Right. So what have you sort of been finding within fanfiction, either in the Mad studies lens or in the disability studies lens? [RM laughs] You’re turning, you’re turning the gaze of this structure, this um…academic discipline on it, what are you finding?
RM: So, when I first started, I’m two years in—I should say, in the UK a PhD is one thesis that you write, certainly within the humanities, for me it’s a maximum of 100,000 words, and I’m part-time so I’m doing that across six years rather than the standard three. When I first started, my poor supervisor, is an expert in the medical humanities, has never read fanfiction, played a video game… [laughs]
ELM: Never played any video game? C’mon, like, even I’ve played some. [laughs]
RM: She hasn’t done any of this stuff, so we agreed that I’d write, like, an overview that would help me structure my thesis, but also explain to her in more detail why I’m looking at these things. And when I was doing that preliminary work for fanfiction, I reached out to Destination Toast, and said “Hi, I’ve never been in the stats side of fan studies before, has anyone ever done anything around Madness or even around disability in general?” And they said “Not really.” You know, there’s some very basic demographic information, there’s not a ton that then breaks it down, and we don’t have anything about the practices of people writing fanfiction about their own experiences of Madness. But it’s really clear, there’s a lot of writing [laughs] about Madness. You only have to take one look at the MCU, for example, and you will find the majority of stories are tagged “PTSD.”
FK: Yeah.
RM: Now, I think that may be the result of Steve/Bucky being one of the main ships, and then you’ve got soldier-related PTSD. But it’s not just in that fandom, it’s prevalent across all sorts of different ones. I had a call I put out for recommendations for fanfic, and the wealth of different kinds of fandom that was submitted to me was so great that I hadn’t heard of half of them. [all laugh] I had to go and look at what they were.
There’s an interesting ethical conundrum around whether you study your own fandom or not, which I haven’t quite dealt with yet, but the thing for me that’s really interesting, and the thing that is the interactive side of this, because obviously the product of fanfiction is not really interactive in the way that you’d think, but what’s interactive is how you get from being in fandom to producing that fanfiction. It’s how tagging systems work, how we search and read for fanfiction, how we engage with comments, how we write author’s notes. And that’s sort of meta-level stuff.
And if you look through any of these stories I’ve been sent, you see people being really raw and open in author’s notes. And I won’t give any details, but they’re saying things like, “I wanted to write about my experience with an eating disorder. I hope people find this useful to see themselves reflected back.” And then you’ll go to the comments section and it will be dozens and dozens of people saying, “Thank you, I’ve never felt myself come out of the page before.”
And I think it’s something about the interaction with that meta-level, how we get to fanfiction, and also with engaging in a shared common space that is the fandom, and that world that you’re writing in. I think there’s something in going into, for example, the Marvel Cinematic Universe, where people are familiar with what’s out there, and there’s something that grounds you there and makes it easier, or more powerful, in conveying an experience through that familiarity. It’s something I’m still unpicking, but I think there’s definitely something really interesting at work there that I’m interested to grapple with some more.
ELM: That’s super interesting. I’m really curious about the embodied element here. And I’m wondering if you could talk about that a little bit, I’m thinking about…you know, I’ve seen, obviously I’ve seen lots of—I’m in fandom, so I’ve seen lots of “depictions” of PTSD or whatever, right, you know, and I guess by way of a little personal disclosure, I because of my personal experiences, I have a really hard time reading stuff from the perspective of someone who’s like, not PTSD stuff but someone who is having a mental break. That’s hard for me to read from that perspective, immediately I’m thinking of a really beautifully-written fic in the Black Sails fandom called “Unaccommodated Man,” I don’t know if you’ve encountered this in your travels.
RM: I haven’t yet.
ELM: I mean it’s by this author who’s basically a genius, like everything that she writes is wild and experimental or whatever, and I could send it to you if you’re interested, but it’s like, I found it too hard to read—
RM: [simultaneous] Yeah, definitely.
ELM: Because it’s just like, it’s an, it’s not necessarily unreliable narration, but it is someone who is struggling with his grip on reality and his own sanity, right, and I personally, because of my own experiences, have a hard time reading that stuff and I’m curious if you’ve encountered stuff like this. And like, to me, and I don’t know how you feel, I don’t want to embody, I don’t wanna see that. I don’t wanna be put back in that headspace. I’m not like, “Oh, I feel so seen,” right, I’m like, “Oh no, I don’t, I need the narrator to be in much more control of themselves than this.” That feels, you know what I mean? Does that make sense?
RM: I do, absolutely. And I think there’s sort of two dimensions to my answer, one of which is, if you want to represent that experience authentically, and I know authenticity is a word that becomes meaningless because it gets used so much, but if you want to show that experience, you need to make the person reading it uncomfortable. Because you are feeling uncomfortable. Which is sort of one side of the answer.
Some of the stuff I studied in video games, there was a game called “Hellblade: Senua’s Sacrifice,” which is about a woman with psychosis, and they specifically worked with people with psychosis, brought them in very early on when they were designing the game, all the way through the process, and one of the parts of feedback that they got was “Please don’t make it too nice. Some of the stuff we experience is terrifying. If you want people to experience this, you need to scare them. Please don’t hold back on that, but do also show that sometimes we have a positive relationship with the voices we hear.” And it’s a very complex thing to show, which is a part of why I find it interesting.
The other half of the answer is, as a Mad researcher, it’s very important that I protect myself when I’m researching. I always, for anything I’m researching, read all of the trigger warnings and so forth beforehand. I have stuff in place so that if I—for example, when I was studying that video game, it did at one point cause me to have a panic attack. And so I have a sort of plan in place for if that happens, stuff set up so that I can just stop it, I don’t lose any of my work, and I can just leave. I don’t do anything, most of my work is done on campus, but I don’t do anything like that on campus. I only do it at home, so I’m always in a safe space if I need to.
And this is something I don’t think is talked about a lot in researching Madness, and I think it’s important that we do it more, because absolutely there are times that I read things or watch things or play things where I’m too uncomfortable, and I’ve actually used that in my thesis, I’ve written about that. That’s one of the reasons that my positionality is really important, because I can say, “This bit did affect me, but if they’d done this other thing instead it would’ve been better.” And I’ve had to become comfortable with discomfort, but then I think my life has made me comfortable with discomfort, so I’m quite well-prepared for it I guess.
ELM: It’s interesting, because it’s like, so how do you think about that line between…like, I absolutely understand the provoking discomfort thing, right, and the story I’m describing I think would be uncomfortable to read if you hadn’t had the experience of being in an institution and feeling like you’re going insane as I have had, but I feel like so much of popular media and to some degree fanfiction, which can feel a little tropey and not super thoughtfully done sometimes when it comes to these issues, so often feels exploitative and done for shock value, and I’m wondering how you sort out those, that kind of space, that spectrum.
RM: Yeah, definitely. So, that absolutely happens, and it happens not just in fanfiction, but in all forms of media. You get a lot of, and I’ll say this in air quotes, “homicidal maniacs,” which are positioned in horror, especially alongside the Mad experience, but don’t really bear any relation to what the vast, vast majority of people with Madness are actually experiencing.
And one of the key things I’ve found in the work I’ve done is that the presence of Mad people in the authorship of the media is absolutely vital to make sure that that doesn’t happen. That that exploitation doesn’t happen. In the example of the video game that I mentioned, there was an interview with one of the service users, who said, and I can get you the exact quote, but it’s something like “Our involvement was never tokenistic.” And that’s another key thing, you can’t just sort of bring someone in, get them to say some stuff, and then not listen to it. There’s no point having a consultant in if you have no intention of doing anything [laughs] with their feedback.
And similarly in fanfiction, I’m looking especially at things where people have disclosed experience with the thing they’re writing about, which has involved a lot of hunting on my part, and that’s another thing I’m sort of querying the ethics around, is you know, I’m looking through all the comments section to find where someone said “Yes, I did write this from my own experience.” Because whilst many people, as I said earlier, put it in the author’s note, not everyone does.
But it’s really important to my research to see the difference between the two, because in my other media types I have examples of it being done very tokenistically, very badly, very leaning-into-stereotypes in a very nonsensical way sometimes. I do think it’s a big danger. I think that is the, you know, other side of the coin of “This media’s really good at conveying this experience,” it’s generally because that media type is powerful in some way and it can be powerful detrimentally as well as powerful positively.
FK: That’s really interesting, and it must be a really…a thing that’s sort of hard to approach, because I mean, you’ve read a ton of fanfiction yourself over time, right?
RM: Yeah.
FK: So you’re like, kind of going from being a fanfiction person [laughs] and now trying to negotiate that ethical dimension as an academic. But I don't know, I guess I’m also interested in hearing about your experiences non-academically, like what you were reading, what you were doing.
RM: Yeah. I mean I’ve always been reading fanfiction about difficult experiences, because that’s what interests me, and I like seeing those experiences reflected back. I do have a really vivid memory from when I was a teenager reading “Summon the Lambs to Slaughter,” by La Guera, I don’t know if I’m pronouncing that correctly.
FK: A fic that I also remember very vividly from that time period. [laughs] It’s a Harry Potter fanfic.
RM: It is, yeah. And one of the reasons I remember it so vividly is that, so that is an author who is writing about her own disability, which she had projected onto an original character, and she did not pull punches in that story. It was very, very graphic in terms of bodily fluids, you know, difficulty functioning that she had, I think the character uses a stoma bag, and that’s all described very clearly. I think she vomits in a classroom at one point and faints, and it’s very, very…normally when you see depictions of disability, they’re made a bit nice. Because people want—and this is the problem—is that people want to see inspirational disabled people who undergo lots of trials and then get better. But the reality is that isn’t the experience of most disabled people, and it puts horrible pressure on them to try and “make the most” of their experience, when actually it can be horrible and you just want to say “No, this is horrible.” And I really felt that in her story, but I remember at the time being horrified by it. And thinking, “I came here for a Snape/OC romance.” [ELM laughs] Which she never gets to, by the way, because it’s unfinished. [all laugh]
ELM: Oh man.
FK: [simultaneous] I remember being pissed about that! [laughs]
ELM: That’s a, Flourish was just here for the Snape/OC romance…
FK: Yeah, yeah, we were there for the same thing.
ELM: Yeah. [laughs]
RM: Yeah, and like, the relationship that the character—who is also called Rebecca—has with Snape is really interesting, but you don’t get to see any of it play out, unfortunately. Although fortunately, in retrospect, because she is, ah, 14 I think, in the story.
FK: Yeah, it’s not, it’s not, [ELM and RM laugh] it’s not the greatest. Like, in retrospect, but at the time…I don’t know.
RM: At the time, as a 14-year-old with a massive crush on her teacher, I thought it was fantastic. [FK laughs] But not so much in retrospect. But yeah, I think that’s definitely a defining moment for me, was reading that story, and I know I can think of other things I’ve read since then that have been impactful as well.
ELM: It’s so interesting to think about…I feel like, and I’m wondering if you feel like this too, we’ve seen a—you know, what are we talking about, 20 years ago for this story, right?
RM: Yeah.
ELM: It seems like, oh, that makes total sense for that time, someone would write that instead of giving one of the canonical characters this disability, writing a totally fresh—I mean also the new student at Hogwarts, I think, was a—
FK: [overlapping] Classic, classic.
RM: [simultaneous] Oh yeah, she was an American transfer as well.
ELM: [overlapping] —a discussion. Oh, of course she was, yeah yeah yeah. That’s important, that she’s American. [laughs] But I feel like we’ve seen such a rise in people being willing to give those disabilities to characters who do not have them—I don’t know if it’s something that you’ve observed, even in the last few years, I feel like a lot more, not just disability, but we’re talking about that specifically.
RM: Yeah, definitely, I think you get two versions of it. So you get people leaning heavily into a disability that is hinted as already there, for example Steve and Bucky potentially having PTSD. You can see hints of it, especially with Bucky, in the cinematic universe, but people will be explicit about it and lean into it much more heavily.
Or, you get where people have made a character who is normally able-bodied and able-minded, disabled entirely. And I have mixed feelings about that one, because it can be done very badly. Because sometimes you get…I don’t know, I’ll stay with Marvel as an example, this is Tony Stark, but he’s also got an arm missing, and he’s got a prosthetic arm. That’s a bad example because he already has prosthetics, so he’s already disabled, [RM and ELM laugh] but if you did that to someone else who wasn’t disabled, and then don’t change anything else about their character, you haven’t represented the disabled experience. Because what you’ve done is just given an able-bodied person the same life, but you’ve said it’s disabled.
FK: Yeah. A little bit like the classic thing of, like, “Harry looked down at his brown hand,” and you’re like, “Oh, he’s brown in this one, OK.” [ELM laughs]
RM: Yes. Yes. Yeah, and I think that’s one of the issues with the idea of Black Hermione, that I think Ebony Elizabeth Thomas talks about, which is the, it’s a cool idea, but where’s her experience as a Black girl growing up in the books if she is Black?
FK: Yeah, totally.
RM: Like, it would make a difference to her life [laughs] in the same way that disability would.
ELM: Right, absolutely. I have a million more questions for you [RM laughs] but we, it’s a, an episode of many guests, but would you come back on the podcast when you turn in your dissertation?
RM: I absolutely would, yeah! [laughs]
FK: Oh, I would love that.
ELM: [simultaneous] We would love, I would love that, so. [laughs] Well thank you so much.
RM: [overlapping] I’ve been trying not to be starstruck, [ELM laughs] because this is my, genuinely, I have dreamed about how I would answer the fandom background question.
FK: [laughs] Stop.
ELM: That’s amazing.
FK: Stop! Well, it was a total pleasure to have you on, I can’t express.
RM: Thank you! [all laugh]
[Interstitial music]
FK: There were a variety of reasons why I loved talking with Rebecca. One of them is just the nostalgia factor for like, thinking back to a fic that we both remembered, but also, I had never heard of Mad studies before, and I’m really really interested to learn more about it now.
ELM: Yeah me too, I’d never heard of it, and like, I was familiar with Crip studies, it seems like a similar reclamation of terms there. You know, not to center myself too much in any of these conversations, but like, obviously I was hinting at it a bit in that conversation, and it’s interesting to think about like…the stuff that I find personally triggering because of my experiences with mental health, to see Rebecca frame that as like, “Well, a lot of it is supposed to be deliberately confronting, because feeling like you’re losing your grip on reality is confronting,” right? And I think it’s really interesting that the goal, and I think the well-meaning goal of some of that art, when it’s made well, also could have kind of a…like, that’s the intended effect, but that’s also, you know, the intended effect is to trigger, that’s very interesting to me.
FK: [overlapping] Yeah! Yeah, yeah, totally.
ELM: And doesn’t necessarily make me wanna engage with that, but [laughs] I really have also appreciated the nuance with which she was talking about self-protection and content warnings and triggers and things like that.
FK: Absolutely. OK. We had somebody else call in who I think would be really interesting in context of what Rebecca was just talking about working on, because this was Dr. Paul D. C. Bones, and he’s a sociology professor at Texas Woman’s University, and his name is perfect because he studies the horror genre.
ELM: Amongst other things, he studies disability, I know for sure.
FK: [overlapping] OK. [laughs]
ELM: [overlapping] But Dr. Bones, Horror Professor is like, how I’ve decided to think of him, so thank you very much. [laughs]
FK: Great. Let’s, let’s listen to what he had to say.
Dr. Paul D. C. Bones: Hello, I am Dr. Paul Bones, and I love horror. I’m also disabled, and sometimes those two facts…mmm…kinda bump up against each other. So, disability really has, from the beginning, been the core of horror. It is the genre that has been most likely to have disability representation. This has taken typically two forms. So, first would be Madness, the second would be physical difference, so facial or, uh, limb deformities, things like that.
And this has always been the case. If you want to look at Psycho as being probably the first American modern horror film, that was all about dissociative identity disorder. We can also look at Friday the 13th, which also dealt with dissociative identity disorder in the first one, and of course the famous ending of Jason, the boy with facial difference, popping out for the jump scare and grabbing, I believe it was Chris? I believe it was Chris. I don’t have the direct quote in front of me, but Tom Savini made the point of wanting to make Jason have physical difference, because he needed it to be freakier. Those are not his exact words, but close enough. I mean granted, I would argue that zombie boy jumpscare, regardless of what his face looks like, probably gonna scare some people. A better example might be Nightmare on Elm Street—when you have a supernatural, evil entity that can permeate your dreams, make your worst nightmares come to life, and has frickin’ knives for fingers, maybe, maybe he doesn’t need to have a burned face. I mean obviously the look is something that’s very iconic, and it’s hard to see it without it now, but I’m just sayin’, there’s a lot there.
So, you know, that’s, that’s, that’s a historical thing. It’s interesting, the way that disability is played out in horror movies, again with this focus on making these characters look monstrous. Especially since, if we really wanna be honest here, most of the monsters that I’ve met in real life, they’ve looked exceedingly “normal.” So disability has always been a part of horror, and more recent horror has really leaned into this. Which I thought would be a great idea! And it hasn’t been. Um, if you wanna look at more recent works like Bird Box, The Quiet Place, Malignant, Come Play…the remakes of Halloween, Nightmare on Elm Street, Friday the 13th, Girl in the Window, all of these have tried to lean more into actual diagnoses and actual conditions, whether that’s a tematoma—teratoma? I’m not that kind of doctor. Or looking at sensory disabilities.
I thought something that would be really cool, because you know, there’s a lot about the disabled experience that really lends itself to horror, whether it’s the body horror of physical disability, reality not quite matching perception, the ostracization that comes with living in an ableist society, most of these have really…not really hit the mark. A lot of times what you end up with though, is either a wildly inaccurate picture of the actual disability, which is actually worse than just saying there’s a crazy person that escaped from a mental asylum and wants to drill teenagers with a literal drill, or something more inspirational of “Aww, the disability was a superpower the whole time.” And that kinda sucks, because that’s not really how it works.
I will say, I do wanna end this with just a bright spot, Midnight Club on Netflix, it’s hit or miss in a lot of ways, I’m a huge Christopher Pike fan from when I was a teenager though, but I love the way that it uses small crumbs of representation. So it really is about a group of terminally ill kids, and it sprinkles in these things, like they have a great takedown of inspiration porn, it shows kids in relationships and the mismatch between disabled and non-disabled. There’s a lot of bitterness that’s also shown there that’s very true and realistic. There’s also a lot of love. So, for me, being in the horror fandom and being disabled, little crumbs like this actually go a long way. And it can make a show really great, because it taps into the reality of disability.
ELM: I, this, you know, this is such an absolutely fascinating voicemail. And it’s interesting, the thing that strikes me most is this idea of like, “This would have just been better if it had just been a crazy person who escaped from the institution,” right, you know what I mean? [both laugh] Just keep it super vague, but it’s so true, when you think about like…the trying to get the, you know, naming a condition, right? And then just like, getting that wildly wrong, and so then that’s offensive, and it’s like, “What were you trying to say here?” I feel like it’s definitely absolutely been a trend that I’ve observed over the last decade, and been kind of baffled by, why that continually happens in Hollywood.
FK: Yeah, and I mean, I think also especially in horror.
ELM: Yeah!
FK: Because if you name the condition, a lot of times in particular it’s like…well, and then they murdered everybody, you know what I mean?
ELM: Right, right! [laughs]
FK: Like I know people who have conditions that are like, widely-used in horror in that way, who are totally in the closet, especially about their mental—I mean you know, to use that metaphor I guess—about their mental health situation, not because there’s anything about that, but just because they know that people will associate it with that horror movie they saw.
ELM: Right, right. And it’s complicated, it’s interesting, we were talking a lot about metaphor when we did our Interview with the Vampire episode recently, and when metaphors work and don’t with supernatural creatures, and like…it seems so challenging when, exactly what you’re saying, like vampires as a queer metaphor, it’s like, sexy, you know what I mean? [FK laughs] It’s undeniable, that’s a very positive, you know what I mean? That sort of thing. Whereas the idea of trying to do something metaphorical with disability and showing it as monstrous, while there is obviously a hugely long history of disabled people and other marginalized people seeing themselves in the Other, etc. etc., exactly what you’re saying, this kind of this idea that that’s at the root of why the character is the murderer? I feel like that’s really tricky, because then you start kind of crisscrossing into, like, blame. Or essentialism, I think it could wind up in.
FK: Absolutely.
ELM: This is such a fascinating, thought-provoking voicemail, so I really appreciate Paul sending this in.
FK: Yeah, absolutely, thank you. OK. So the next person is…I would say also in conversation with some of what Rebecca was talking about, but maybe from a different point of view. This is from buffer-overrun.
ELM: buffer-overrun is a name from the past, I feel like they wrote in or called in years ago? Do you recognize the name?
FK: I, I do, I believe it, welcome back! [laughs]
ELM: buffer-overrun, we’re going to look up—I think it was, I truly think it was from the beginning of the podcast, we’ll include that in the show notes. Thanks for calling in again.
FK: All right, let’s listen.
Buffer Overrun: Hey. This is buffer-overrun, and so I’m calling for the episode on disability. I have a history of IV drug use, and I was recently diagnosed with PTSD. So, I should say first that I’m really coming from a harm-reduction perspective, and I think that often people see harm reduction as just a public health strategy, but for me it’s more of a philosophy. You know, it’s a belief in and respect for the rights of people who use drugs.
So, my fandom origin story was, I watched the first two seasons of BBC Sherlock, and I was really frustrated—I mean there’s a lot of things I liked about it, but I was really frustrated by the way that drug use was handled on the show, and so I turned to Google to try and see what other people were saying, and I just fell headfirst into fanfic.
So at that time, I was pregnant and I was trying to finish a postdoc that I hated, just completely miserable, and I just wanted some fun escapism, and you know, fic was exactly what I needed. And I found a lot of amazing authors, and a lot of amazing fic, but I also found a lot of harmful stereotypes about drug users. And so, some examples would be, like the idea of a loved one kidnapping a drug user, locking them up in their apartment or whatever until they detox, the idea that this is for their own good; the idea that a character needs to refuse medically necessary pain medication; you know, casually using the word “junkie.” And I guess I would say like, I know that these are tropes and stereotypes that are all over pop culture, and have been for decades, so what I would want would be that people would be aware, and then they could tag things properly, and then I wouldn’t necessarily stumble into things that were untagged.
So, thank you! Your show’s great! Congratulations on so many years. OK, bye.
FK: So, I thought this was really, really interesting, just thinking about the question of like, peoples’ rights to sort of self-define and decide what they’re doing, and also thinking about the way that…I guess I’m also listening to this comment in the context of experiences I’ve heard about from people, you know, who are seeking needed pain medication, or who are self-medicating when they can’t get pain medication that they need, which is obviously a disability issue, too, there’s so many things going on here.
ELM: Yeah. Yeah. And every time we do an episode where it’s focusing on one marginalized identity, I’m always thinking of the parallels that we’ve heard from other folks, right?
FK: [laughs] Yeah.
ELM: And maybe, for better or for worse, obviously, I feel that way every time. But this one really hammers home to me I think the thing that we hear over and over again, in the race episodes in particular, because I think in our trans episode I think that there’s just not a lot of, I mean there’s mainstream stereotypes but there’s not a lot of even mainstream representation to then seep into the culture and get repeated and repeated.
But you know, the way that Moffat and Gatiss talk about drug—I’m just blaming those two, but you know what I mean [FK laughs]—but the way that Sherlock talks about drug use, and the way that that got parroted by the fandom, and it wasn’t just them parroting the show, you know? It was every single thing you’ve ever seen about drug users, right? And like, it’s so hard to unlearn, and I’m sure that even folks perpetuating those stereotypes may have had people who’ve had these experiences with drug use or addiction in their lives, and still were—and have had empathy for them, but still were not coming from a place of personal understanding.
FK: Yeah.
ELM: And I, you know. So I really appreciate buffer-overrun sharing that, and you know, it’s hard because it seems like, oh yeah, tag for it, then just tag for that, but then how is, if buffer-overrun or anyone else is looking for a nuanced, resonant portrayal of their own experience, then they’re not gonna get it because they’re like, “Oh, I can’t click on that tag, it’s probably gonna be awful.” And I think that’s something that resonates across a lot of marginalized identities in fic.
FK: Absolutely, absolutely. All right. So, the next person we have is Taylor. Shall I just go ahead and read the next letter?
ELM: Yes, this was a written letter from Taylor.
FK: All right, Taylor writes:
“I have both depression and ADHD, and my fandom is included in everything in my life that these conditions touch. In fact, when I was diagnosed with ADHD about two years ago, I was surprised about how my fannish habits had formed around it. I figure I’ll give you some bullet points of things I’ve experienced to throw into your feedback pool.
“The attention and motivation gap can make fannish creation and participation difficult. Fic writing is something I’ve given up as an impossibility for myself for this reason and it took a long time to accept (though I assume many neurodiverse fic writers manage their motivation in a lot of different ways. I think many ADHD fic writers are probably the type that jump between projects frequently).
“I express my fandom in ways that require less executive function, can be picked up or dropped quickly and easily, and don’t require too much planning ahead. My ‘to read’ fic list is tagged so I can quickly skim for what I’m in the mood for or return to something half-read. I roleplay instead of writing, and I use Omegle as my form of looking for group, because of the quick back and forth it offers and the ability to toss any idea out there or disconnect at any time.
“That said, executive dysfunction can make longer term stories harder to keep up with and lead to interpersonal conflict. Every Omegle-centric roleplay community I’ve been a part of seems to have a surprising number of ADHD members, though I’m unsure if it’s because the platform lends itself to that or because fandom in general seems to appeal to the neurodiverse crowd.
“Hyperfixation and hyperfocus both pump up fannish feels, how I express them (continuously), and how long I express them (binge reading and writing for example), and for creators, passionate creativity is seen as one of the ‘superpowers’ of ADHD.
“Good representation in fandom is amazing—characters that are experiencing the same thing I am are so validating, especially things like impulsivity, lack of motivation, anxiety, etc. There’ve been some amazing series and fanworks that over time that have felt so good to experience, including characters having the problems so I can say, ‘Yeah, these are real problems!’ and characters that overcome them ‘Improvement is possible!’ Obligatory shout out to Yuuri Katsuki here :)
“Headcanons have also been amazing here for me here, because neurodivergence can have such a stigma, but people rarely headcanon characters they hate with neurodivergence, so I find it tends to come up as a hypothetical but still very heartening list of characters I can relate to in a positive way. It also gives lots of opportunities to discuss the ways that neurodivergence can affect different people differently (for example, someone once compared and contrasted their ADHD headcanons for Jake and Amy from Brooklyn 99—Jake with the more stereotypical hyperactive presentation, and Amy with presentations that are more common in women and the late-diagnosed, who are underrepresented).
“Depression and ADHD associated self recrimination are worse when they’re about the thing you love—it’s one thing to be too depressed to do something you don’t care about, but loving something and not being able to muster the motivation to engage with it (or engage with it consistently) can be a very hopeless feeling.
“Sometimes fandom is the only place there is to find dopamine and that can be a precious distraction or even just the thing worth (sometimes even metaphorically) getting out of bed for.
“Thanks for all of the care you have put into making Fansplaining so inclusive as of late, I’m sure I’m not the only one who appreciates it!
“Best, Taylor”
ELM: Aw, thank you so much, Taylor.
FK: Yeah.
ELM: This is a very interesting list. I think one thing that we’ve talked about in the last year, swinging around to fandom on a whole, and something I see a lot of commentary about, is the short attention span within fandom.
FK: Mm hmm.
ELM: And it’s like…oh. Reading this list, it’s like, oh, this is literally, Taylor is describing, this is the way that she does it, right? You know what I mean?
FK: Yeah!
ELM: And it’s interesting, and obviously I understand why people get frustrated when it seems like people are just, you know, flitting through and you can’t keep a solid mass of people to be in a fandom, right? But also no individual fan owes any community any commitment or anything, you know what I mean? So it’s just like, it’s interesting to think about, I wonder how many people who are kind of going in and out or are having a million fandoms at once, in a very light, skimmy sort of touch, are neuroatypical.
FK: Right, or, the other thing that I have myself complained about sometimes, is “This person showed up, did the most, and then disappeared.” You know what I mean?
ELM: [overlapping] Yeah. Yeahyeahyeahyeah.
FK: [overlapping] It’s like, “Where'd they go? Why are they,” you know, and it’s like, “Oh, maybe they were hyperfocusing.”
ELM: Absolutely.
FK: And that’s not bad, actually, they had a good time I presume, I hope, and I can enjoy the things that they’ve left behind them in this fandom even though they’ve moved on to something else.
ELM: You know, I mean, the hyperfocus, I’m glad you brought that term up, because it’s been a few years now that we’ve seen hyperfixivity used as a stand-in for “my new obsession,” right, “my new fave, my new—”
FK: Yeah yeah yeah yeah.
ELM: “My new blorbo.”
FK: Ugh.
ELM: The frickin’...yeah.
FK: You’ve, you’ve turned me against blorbo, I was neutral on it at first, but now after many, many times of you saying no, I say no.
ELM: [laughing, overlapping] Yessssss. That’s my sheer force of will and hatred. But yeah, absolutely, right? And I remember when this first started to emerge, I got into a conversation with someone on Twitter who was…kind of pushing back against this, saying like, “This is a term for ADHD and autism, and other neuroatypicalities, this isn’t a—” and I was like, well I don’t know, I’m seeing a lot of it, and I’m not sure that everyone is now using it that way, I feel like the term has kind of seeped out, because regardless of where your, the source of your obsession, how are you gonna break that down?
FK: Right.
ELM: It’s a little chicken and egg, right, and a little beside the point I think at some point.
FK: Yeah, I think it’s also very common for, especially teenagers, to come up with, they take all of these sort of psychological terms and apply them to themselves.
ELM: Sure.
FK: Like “I’m so manic! I’m just so manic!” but said in a very casual way. I don’t know, I feel like I did this when I was younger.
ELM: Well, but what you’re describing is actually a little bit harmful, right?
FK: It is!
ELM: And I understand why people, you know, so I think it’s interesting that, I imagine there was more pushback, I’m describing a specific exchange that I had with someone that was a helpful and respectful exchange, but it’s kind of the horse is out of the barn on that one and now it’s just sort of a term that goes side by side with blorbo. And it’s like…mmm, OK. So. Kinda sucks.
FK: All right, well, on that [ELM laughs] not very cheerful note, shall we take a quick break?
ELM: Uh, yeah, let’s do it, let’s take a break.
[Interstitial music]
FK: All right, we’re back, and before we get back to our guests: Patreon. How we make this podcast.
ELM: And what we have just made.
FK: We just made…what I think may be our finest work.
ELM: Don’t oversell it.
FK: OK, certainly the work about which we were most enthusiastic.
ELM: [laughs] Um…well, by the time this airs it will have been several weeks ago, and I surely will have driven myself up all the walls, Lestat-style actually because he can climb the walls. [both laugh] Between now and then.
FK: [overlapping] We made a special episode about Interview with the Vampire, which is a shared fandom that we are both in right now. Which is the first time that’s ever happened at the same time. So if you want to listen to that very special episode, you can pledge to our Patreon at patreon.com/fansplaining. You will not regret it. [ELM laughs] Or maybe you will, I don’t know.
ELM: Yeah, yeah, you might. So yeah, that is for patrons at $3/month and up. We’re also going to be putting one out shortly about Glass Onion.
FK: Mmm hmm!
ELM: The, and the Knives Out franchise, as it were.
FK: Yeahhh.
ELM: Not as it were, it literally is a franchise now. But you know. [laughs] You know what I mean.
FK: I do. But. If you do not have money, or do not want to enjoy these delightful goods, you can also support us by spreading the word about the podcast, and especially about our transcripts. We have transcripts for every episode, including the special episodes. So whether you want to listen, or read, and whether your friends like to do those things or not, you can enjoy yourself, and spread the word about that wherever people might wanna know about it.
ELM: So that’s at Fansplaining.com. You can get in touch with us there, we have a form on the website if you want to give any feedback about this episode or any other topics; also you can email us at fansplaining at gmail.com; you can call us, leave a voicemail like some of these folks did, 1-401-526-FANS; you can also leave us messages or follow us on Tumblr, and we are on Instagram, but I’m saving the most troubled for last. We’re recording this several weeks in advance because of the size of these episodes and all the moving pieces. I truly do not know. Twitter could be gone by now.
FK: Will we be on Twitter by the time this airs? [both laugh] No one knows.
ELM: So, um…I can’t, I don’t think we can give any information several weeks in advance about the state of Twitter, and when this airs I don’t think we’ll probably be able to say what the state of Twitter will be, two weeks after that, if it is still around. One thing I will say is, we got multiple messages in the last couple of weeks post-Musk-tanking, talking about Twitter and fandom and asking our opinions, and we are scheduled out through the end of the year for topics and so we’re not going to be doing a Twitter-specific episode, but I kinda think that’s for the best, because I’m not sure how effective it would be. It seems, it’s a very quickly—it’s a quickly and chaotically singing ship, and I’m not sure an on-the-ground report, I think a little bit of a…
FK: [overlapping] Yeah. Do we need to shuffle those deck chairs?
ELM: [laughs] So, we will definitely be talking about it in the Year in Fandom, the kind of review episode we’ll do at the end of December, and if it still feels like there’s enough to talk about, we’ll probably do an episode kind of assessing the state of things in the new year. So.
FK: All right. Having done all that business, I think that we should call up our next anchor guest, who is Joan Miller. She’s a doctoral candidate in communication at the University of Southern California, working with my former academic advisor, Henry Jenkins.
ELM: Very incestuous, Flourish.
FK: Yeahhh.
ELM: [laughs] OK, let’s call Joan.
[Interstitial music]
FK: OK, it’s time to welcome Joan onto the podcast! Welcome, Joan!
Joan Miller: Hiiii!
ELM: [laughs] Thank you so much for coming on, we’re delighted to talk to you.
JM: I am delighted to be here.
ELM: OK, so do you wanna give us a little bit of background about yourself, about your fannish self, and your academic work, how they intersect, how, I’m assuming one led to the other?
JM: I, [laughs] I identify my very first fandom as The Little Mermaid, when I was like, three? When I really got into sort of, like, online fandom was as a teenager, I was a big X-Files fan, and then once the Harry Potter books came out and were getting popular, I started doing a lot of Harry Potter fanfiction, I joined a Harry Potter roleplay message board. I’ve been involved in all kinds of different fandoms and like, overlapping my fandoms, weaving them in and out for a really long time. And in school, I was, I got into theater for studying, so by the time I was an undergrad I was, it was just, that was where all my friends came from, the overlap between theater people and fandom people is a circle, and so I went to grad school for the first time for dramatic writing. That’s where I met my husband, then we moved to New York, and we were just kinda scrambling for a while so I decided to go back to school again, and I went to NYU’s Master of Arts in Performance Studies.
About the same time that I was about to start that program, I discovered the blog “Confessions of an Aca-Fan.” And that is a blog from Henry Jenkins, who is now, many years later, my academic advisor and my dissertation committee advisor. But it revealed to me that there was such thing as fandom studies, and that I could theoretically make a career out of talking about fanfiction, and I was like, “Are you fucking kidding me?” [FK and ELM laugh]
While I was at NYU, I wrote a paper about cross-racial cosplay. I submitted that as my application to USC to study with Henry, because I, when I saw Henry’s blog, I was like, “This is awesome, I wanna do this exact thing, I wanna study with this guy.” He really liked my piece, and was excited to see somebody writing about race and fandom. It’s still got a ways to go, but when I started my program in 2015 there was almost nobody. I couldn’t find anything to reference for that article. It’s exciting to sort of be at a point where it’s starting to become more of a thing, and to fold disability studies into that also is really exciting.
And so, this is where the disability part came in for me, is that fall semester of my second year, something was going on with my body where I was walking to class, it wasn’t a far walk, maybe like, a couple city blocks. And it got to the point where I couldn’t walk. My knee was in so much pain that I was crying, I needed to use on-school transport in order to get around, and I finally went to the clinic and they thought I had a torn meniscus, we did all these tests, it took months, finally, November 9th, 2016, I got diagnosed with fibromyalgia.
ELM: Wait, November 9th, 2016? [laughs]
JM: Yes!
ELM: For any non-Americans, that was the day, the day after Trump was elected, so.
FK: [overlapping] YEP.
JM: [overlapping] Yeah.
FK: [overlapping] A cool day. [laughs] Literally, for the nation, for you.
ELM: [overlapping] A cool day? Wow.
JM: Yeah. Literally I was in the waiting room at the Keck USC Hospital, Hillary Clinton’s concession speech was playing, and I just turned away and I was, I had been in pain since August, and this was the first week of November. And I just started crying.
So I got diagnosed that day, rough day. At the same time, the diagnosis was a relief, because suddenly I had an understanding of what had been going on the whole time. I’m sure I could take up your entire hour with the story of my interactions with academia trying to get accommodations as a PhD student who got disabled during the program, it was a nightmare. The difficulty of getting financial and educational accommodations as PhD student, you would think that because of the ADA there would be systems in place, but there simply aren’t, and there’s no way of enforcing the ADA unless you have the ability to sue. So, I got things like, “Oh, we don’t have to provide disabled parking spots, because like Disney World, we’re a private organization.” And I’m like, “No, that’s not how that works—”
FK: No.
JM: “—you are an educational facility who receives government funding and therefore you have to follow the ADA!” And I’m also pretty sure that Disney World has to provide disability parking spots for their employees. There was stuff like that, there was a time when I had to get them to move a classroom because the building was not accessible, it only had staircases and no elevators, and when I made a point about this, I was told “Well, it’s a historical building, so we don’t have to do anything about it.”
The accommodations that tend to exist for disabled people in school are very much geared towards K-12 students and undergraduate students, who are carrying over accommodations that they already had. There’s very few resources in place for people who are newly diagnosed, which is frankly absurd, considering that the ages when you’re most likely to be in graduate school are also the ages when you’re most likely to be diagnosed with a long-term disability. Fibromyalgia in particular is a chronic illness that mostly affects women and people of color, predominantly affects women of color like myself. For those who can’t see me, because this is, I’m assuming, audio-only podcast, [ELM and FK laugh] I am half Black and half white. My mother is from Nigeria, and I identify as Black and as mixed race.
ELM: So, I guess I have two questions. One is, I’m wondering how your diagnosis and how your disability affected your relationship with fandom, and somewhat related, how it affected, potentially shaped, the academic work, if that changed your trajectory in any way.
JM: Yes, and yes.
ELM: OK, great. [laughs]
JM: [laughs] So, my fandom and my academic work, the overlap is a circle. Part of why I study fandom is so that I can indulge myself in fandom all the time, and because I love it and because that’s where all my most important relationships are from. First of all, one of my favorite aspects of fandom is going to conventions, and part of what led to my diagnosis is, just before the school year started I was at San Diego Comic-Con, and I wore crappy shoes. And I was there for five days, walking all day, every day, and…I had a blast, and I got a lot of great research, but it also directly led to me having that pain that led to my diagnosis, and one of the things that I was told right after my diagnosis is that fibromyalgia is entirely linked with your stress. Basically, it’s like being allergic to stress.
FK: Wow.
JM: It’s like, the more stressed you are, the more pain you’re gonna have, I will break out in hives if it’s warm, I will get flu-like symptoms, I will get chronic sinus infections, and just…fatigue and brain fog, which later that year I also got diagnosed with ADHD, and there is some research that suggests that ADHD and fibromyalgia are actually the same disease structure, like the same overall disease and that those are just different syndromes that occur as part of that disease.
FK: Whoa!
JM: It’s burgeoning research, and I haven’t gotten a chance to go that deep into it, but there are a lot of overlapping systems, and both have a big effect on your central nervous system. The other thing about fibromyalgia, it’s not really well-studied, especially when I first got it. It’s doing a lot better now that…seven years have passed? Wow. Nobody really knows how it works, why it works the way it does, there’s only now beginning to be clinical trials for a blood test to determine whether you have it, the way you end up getting diagnosed with fibro is they just rule everything else out.
All that is to say that my favorite thing ever, going to conventions, was suddenly a lot more complicated. Like, one thing that I can remember right off the bat that was a really upsetting intersection of disability and fandom for me is that, I use a Segway MiniPro to get around a lot, and believe it or not, it is on the Americans with Disabilities Act-approved list of mobility devices. So I don’t use a wheelchair, I use the Segway. I use the wheelchair like, very occasionally when I would be at like a museum or something, and I wasn’t feeling good enough to walk. But I always felt really self-conscious in a wheelchair, especially because I knew I was gonna stand up to get out of it at the end of the day, but the Segway…literally everyone saw this as a toy.
It was also at the same time that e-scooters were getting really popular in Los Angeles. [FK and ELM make simultaneous noises of understanding] And it looks similar to an e-scooter, but it’s not. For me this is a mobility device, people were—I had endless microaggressions from people who were, thought it was a game, thought it was a toy, wanted to ride it, wanted to make a joke about it, people who wanted to prohibit me from using it because they saw it as a toy or a game or whatever. And I lived close enough to the Los Angeles Convention Center that I could take my Segway there. And I decided the year after I got diagnosed that I was going to incorporate my Segway into my costume. And I can share a picture of this with you guys, but I dressed up—
FK: Yes, please!
ELM: That would be great.
JM: Yeah, I dressed up as GLaDOS, from “Portal.”
FK: Ahh!
JM: I incorporated my Segway into it because a Segway is black and white, and you stand on it, and you lean and it moves forward, so I was dressed up in it and I had this black unitard, and I had all these wires around me, and I had the face-piece, and a security guard tried to prohibit me from moving around the convention hall, because I was on my Segway. And I started arguing with them, I explained to them that I had a disability and that this was my mobility device. They did not know what that meant, they continued to try to stop me. Another superior of that person came over and was equally kind of aggressive towards me, because at this point I was upset, of course.
And the first instance, maybe not the first, but one of the most notable instances I remember of times when because I look young and because I don’t have any outward physical appearance of disability, people assumed I was trying to get away with something. For me, that has always been complicated by the fact that I’m also a woman, and a person of color, and it’s a question of like…is this because I’m disabled? Is this because I’m Black? Is this because I’m a woman? Is it because I’m queer? Most of the time people can’t tell I’m queer, but if I have signifiers on, pins and stuff like that, what part of my identity is it that you’re pissed off about right now, and why am I being treated this way? And like, would I be being treated this way if I was not one of those things?
Part of cosplay, right, is being able to be read as the character. And in situations where I can’t be read as the character, it creates this sort of alienation from the fandom and from…maybe not from the source material, but from the people that are involved in the fandom and from that community. And if I was talking about this in a classroom on race and gender studies, for example, I would bring up Frantz Fanon, and the sort of, he talked about in his book Black Skin, White Masks, this sort of interpolation of the moment when a cop goes “Hey you,” and a Black person will instinctively feel called upon, even if it had nothing to do with them, just because we’re used to that hypervigilance of just being myself in a space is enough to get me in trouble.
On the other hand, I’ve also found that fandom can be a really great way to communicate about my disabilities? So, my husband and I have been in a Dungeons & Dragons game for ten years now, that is the same ongoing campaign, and it’s one of my like, few claims to fame in the TTRPG community [ELM and FK laugh] is I have a level 22 character that I started at level 0. [laughs]
And so, once I was diagnosed and I was trying to communicate to my husband what it’s like, I started thinking about it in terms of the skills and modifiers that you have in Dungeons & Dragons. So like, for me, I’m normally a very dexterous person, I mentioned I used to do circus stuff, I did counterbalancing and all that kinda stuff, so I have a really high dexterity score. However, thanks to fibromyalgia, sometimes my wires will cross, I’ll misfire, and I’ll just do something really clumsy.
So I translated that to my husband by saying, like, “Oh yeah, so, I have a great dex score, but I have a 50% chance to fail on a reflex save at all times.” And like… [FK laughs] that might not mean anything to you if you don’t play Dungeons & Dragons, but if you do, that is like, [snaps] oh yeah, it’s like I just gave you a medical chart and you were able to read exactly what was wrong. And I have also talked about, like, “Oh yeah, I have a really bad constitution score, like my constitution score is like -1, and my hit points suck, but you know, it didn’t affect my intelligence score, and my charisma score went up!” [FK and ELM laugh] You know?
And so, since then I’ve thought a lot about how tabletop gives me a sort of base language to talk about my physical limitations with my friends who understand that, in a way that not only can they understand it, but if they decided to roleplay, or if they have any experience roleplaying a character who has similar limitations, it provokes a sort of empathy just because of what a good communication tool it is.
So between the sort of cosplay and tabletop, the sort of interactions of roleplay and chronic illness and making my invisible illness at least legible to other people has been really awesome. I also have found that there’s just a lot of neurodivergent people in the TTRPG space. Which is great.
FK: Is this part of your research now? I mean I know you started out and you were looking much more at race, are you now also looking at disability and the way that intersects with fandom? The stuff that you were just talking about is fascinating, I don’t think I’ve ever read anything—I mean I haven’t read all that much, there’s probably people working on it, but I don’t think I’ve ever read anything about that.
JM: I don’t know that there’s a lot of people in academia working on the intersection of disability and fandom. Fandom studies is a fairly new field; compared to the vast majority of academia, fandom studies is a baby. We’re maybe now getting into the second or third wave. This is true not just of fandom studies, of academia, but of the entire social world pretty much: where we are with ability and disability and ableism is centuries behind where we’re at with race and racism.
Ableism is rampant, but in terms of my specific research the thing that really shifted everything was that my rheumatologist recommended that I get cognitive behavioral therapy, and since I had depression and anxiety anyways, it made sense, and so it’s also kind of impossible to not have emotional health issues when you have a disability in this day and age, it’s just our society is set up to really make you hate yourself if you aren’t able to work. If you aren’t able to labor the way that other people are. Society really is conditioned in such a way to make you see that as a flaw.
So, when I got into my cognitive behavioral therapy, the good thing is that my therapist—she’s a therapist, so she had a clinical doctorate. And I was able to talk to her not just about my emotional, personal issues, but how I saw that being reflected in my research. And I had started to get into affect studies, which is basically the study of emotions on a social scale, and I started thinking about how fandom stories, fandom relationships, were a way of teaching empathy and emotional intelligence, not just that but I started to see empathy and emotional intelligence as an evolutionary imperative.
I had always been thinking about this question of, like, “What actually makes humans different from other animals?” This was just something that I had been thinking about my whole life, and once I started to ask that question in conjunction with the questions of empathy that I was having, it was like, “Oh, the thing that makes us different is that we can have empathy for abstract relationships.” Like, I can empathize with you despite never having met you, not knowing who you are, not having any sort of shared experience or trust, but knowing that we both love “Portal” means suddenly I can have an emotional connection to you in an abstract way that other animals are not capable of.
So I started kind of conceptualizing empathy, neurodivergence, and sort of all of this, I was pulling in stuff from neurology, from social work, from evolutionary anthropology, looking at the differences between chimps and bonobos and how they relate to each other, and thinking about, “What does popular culture fandom do for us that helps us develop the empathy that holds our societies together?”
And so my dissertation research looks at a couple different ways of analyzing empathy in fandom, so I did Steven Universe, the TV show, because Steven himself is an empath, and what does it look like when empathy is a superpower, and when you’re creating an empathic writers’ room to tell those kinds of stories? And my second chapter is about Afrofuturism and empathy as part of a genre, and how Afrofuturism relies really heavily on empathic community building as a theme. And then my third chapter is about tabletop games and empathy and emotion as actions, as speech, as ways of participating in the public sphere.
And so, yeah, it all came down to the confluence of having a disease that is a physical manifestation of my emotions forced me to look at emotions and…I think the thing that made everything click together at once is that there’s a song in Steven Universe called “What’s the Use of Feeling Blue.” And in the song, it’s being sung from a person named Yellow Diamond, to a person named Blue Diamond, and I got a chance to interview Rebecca Sugar, and I asked her, “Is it ‘What’s the Use of Feeling Blue?’ or is it ‘What’s the Use of Feeling, Blue?’ [FK and ELM both make simultaneous interested sounds] Is she addressing Blue Diamond, or is it ‘what’s the use of being sad?’” Ultimately it doesn’t matter because both questions are really provocative, but she specified that it was “What’s the Use of Feeling, Blue?”
That ended up becoming the title of my dissertation, and so I’m just looking at, like, what is the actual utility of feeling these feelings? Including grief, including sadness, including pain and isolation and depression, like, why do we have those, as human beings, why is that part of our life experience? Obviously it’s important, and I think it’s important because it allows us to have these gigantic societies where we can maintain a certain level of trust to uphold the sort of social contract, because we can do abstract empathy. Because we can do abstract emotions to people that we don’t have tangible proof of their existence, but we know that they exist and we can still feel for and with those people.
ELM: That is so interesting. [laughs] I kinda want you to talk about this for—we can’t, we can’t have you just go on and on, but you could come back.
JM: [overlapping] Well the good news is… [all laugh] I’m doing a podcast component of my dissertation.
ELM: Oh, that’s great, we’ll have to share, you will have to let us know.
FK: [overlapping] Woo!
JM: [overlapping] Yeah, yeah. So when that comes out I will let you guys know.
ELM: Please, please do, and we’ll definitely share it.
FK: [overlapping] Wonderful.
ELM: So before we wrap up, because we’re short on time, I’m just curious because you know, you started, you were doing work on race and fandom, and it sounds like obviously there’s a race studies component, you’re talking about Afrofuturism in your dissertation, too, and I’m wondering if you’d be willing to speak a little bit to the intersections of disability and race when it comes to fandom in particular. I know there’s a lot of broader issues around this. I see communities pitting themselves against each other, you know, white disabled fans, etc., sometimes using that as a shield. [laughs] Not to be too provocative in the question, but you know what I’m talking about, right?
JM: Yeah, for sure. There’s a lot of tendency in fandom to use mental—I prefer to call it emotional health, because when I think about mental health I’m thinking about cognitive disabilities as well, so like, ADHD is in a different category than depression and anxiety—so for me, depression and anxiety, that’s emotional health, something like dyslexia is a cognitive health issue. Which isn’t to say that they aren’t linked. But there will be a tendency to want to use emotional health issues as a sort of Magic Eraser for other issues, other -isms, whether it be racism, or homophobia, or transphobia, stuff like that.
I will say—and again, I am a fairly light-skinned person, and I have a very mainstream Midwestern accent, I use a lot of academic language—and my experience is that when I got diagnosed with a disability and I was very out about my disability, that was worse than any racism I’d ever experienced.
FK: [overlapping] Wow.
JM: The ableism that I’ve experienced is miles beyond. The microaggressions that I experience when I’m using my mobility devices, the language that is in modern discourse that still hasn’t been eradicated, things like referring to things as the r-word, referring to things as insane or crazy, the degree to which people—even within academia—people that are teaching critical cultural studies believe that people with disabilities shouldn’t be doing advanced degrees. The infantilization of people with disabilities, the assumptions of—I once had a professor, I forgot an assignment not long after I had been diagnosed with ADHD and I told him I forgot, and I was really sorry, and he suggested to me to use a calendar. And I was like, “Yeah, buddy, I’ve heard of calendars. I have heard of calendars. I have one, and I use it.”
ELM: It’s a new invention, yeah. Pretty cool.
JM: Yeah, yeah. “No, what? I never thought of calendars, I made it all the way to the PhD level without ever realizing there was such a thing as a calendar.” But also things like saying that my work needed to be more mature. Which is never a comment that I got before talking about having a disability.
So, at the same time, my work in Afrofuturism was always embedded in Black feminism, and Black feminism is inherently intersectional because it tends to come from a place where, in the United States, Black women are at the bottom of the heap. Advocating for Black women, especially intersectional Black women who are Black and queer, Black and disabled, often means that everybody else will benefit from it.
Also within Afrofuturism, coalition building is a huge part of the feminist Afrofuturism texts that I’m interested in, that I read, and…yeah, I think it’s, it’s…having those intersectional identities is really hard, I can never parse whether some slight is based on one or the other. I often find myself asking “Is this because I’m Black, because I’m a woman, because I’m disabled, is it because I’m a disabled Black woman?” Am I more likely to be infantilized because of those intersections? I’m more likely to be treated as suspicious, especially when I have my mobility device, people treat me like I’m trying to get away with something, and it makes me wonder sometimes, you know, if I have my mobility device and I’m exactly who I am but five shades lighter, do I get away with bringing it in this time?
FK: This has been so much, I mean, I could ask you 10,000 more questions, I hope that you will come back sometime, because this has been amazing.
JM: [overlapping] I would love to.
ELM: Yeah, when your dissertation is finished, we’d love to talk to you about the whole thing.
JM: Absolutely, when my dissertation is finished I’m just gonna do everything, I’m gonna be so excited. [all laugh]
ELM: Good luck with that.
JM: All right, thank you very much.
ELM: [simultaneous] All right, thank you.
FK: [simultaneous] Thank you for coming on.
JM: Byeee!
FK: Bye!
[Interstitial music]
ELM: Oh, that was a fantastic conversation, I’m so glad that Joan could come on. I do like that you both have somewhat parallel, intertwining academic careers, I really appreciate that.
FK: [laughs] Definitely.
ELM: [overlapping] It’s not that parallel, it’s just like, one guy, but you know what I mean, you know what I’m saying.
FK: Yeah, totally, totally. OK, OK. [ELM laughs] So I wanted to pull out one thing that Joan was talking about in particular, because we got a couple of messages that related to this, which was her experience at cons.
ELM: Right.
FK: This is one of those instances of like, putting people together who seem to be talking to each other. So the first person that I would like to sort of put in conversation with Joan about this is Wheelchairidan.
ELM: All right, well, let’s listen to the voicemail.
Wheelcharidon: Hi! You can call me Wheelchairidan. I have a condition that affects my ability to walk, especially for extended periods of time. I’ve been involved in cosplay for a long time, and I’ve been involved in cosplay before I had any mobility aids. And the first time I actually used a mobility aid that was appropriate for me, or any mobility aid at all, was at a convention. I was cosplaying a certain pink robot from a video game, and I had been walking around for a few hours when I suddenly collapsed. And I had thankfully made a few friends at that point, who had managed to rush to con staff and get me a wheelchair, but they had to leave after a few minutes after getting me some food and drink, and I was honestly really scared and nervous, because, you know, being in a wheelchair, which I wasn’t used to at the time, and being alone at a convention on my own in this new situation was pretty scary.
But I ended up finding another cosplayer who was cosplaying as a certain blue skeleton from the same fandom, and we ended up being really great friends, and he pushed me around without complaint, defended me from some pretty awful con sellers who were very unhappy that I was parked in front of their stand [laughs], which I wasn’t, I was parked multiple feet away. But he managed to turn what had been a really scary situation into something that just made me really happy, and it provided me a lot of courage, strength, and just calmness whenever I, a few years later, had to switch to using a wheelchair full time. And, [laughs] it wasn’t as scary as I thought it would be, because I already knew that I had had a friend out there somewhere who wanted to help me regardless of whether I was in a chair or not, and regardless of how long they had known me for. So…thanks to that cosplayer, I’m a lot more comfortable with using the mobility aid that I need to nowadays. Thanks!
FK: I mean, that’s like, the most heartwa—it’s not the most heartwarming, because Wheelchairidan’s talking about, like, having people be jerks about the wheelchair, but at the same time, it makes me really feel glad to know that like, a person who’s an ally could make such a big difference in somebody’s life by just like, bein’ a mensch.
ELM: Yeah, yeah, and like, you know, not to over-index on one anecdote and one random dude or whatever, but like, you know, prioritizing someone else’s fannish experience over your own, right, which I think is a thread that we see throughout the fandom and disability conversation, is fans not wanting to change their own experience. And so, I mean I’m putting a lot on this scenario, I don’t know what this person’s motivation was, [FK laughs] he just wanted to be a nice guy or whatever, but you know, I think that I’ve definitely encountered at cons, people not wanting, they’re like, “I’m here to do what I wanna do.”
FK: Right.
ELM: And it’s like, often that can be at the expense of people who are having a harder time physically for whatever reason, whether it’s social anxiety or a physical disability or whatever, to make space for that.
FK: Right.
ELM: So. Yeah.
FK: Yeah, I mean, it feels so cheesy to say it, but I do actually think it’s true, that when you treat other people like human beings and make friends with them, that brings something to your life and con experience that you would not have [ELM laughs] if you were just trying to, you know, get first in line. You know what I mean? There is—
ELM: [overlapping] So cheesy, Flourish.
FK: [overlapping] There is a—OK, whatever, we’re gonna stop now. Too cheesy. OK. And in fact, we should listen to, there’s another person who also called in who also had con experiences to talk about.
ELM: Yes, this is from Hannah.
FK: All right, let’s do it.
Hannah: Hi Flourish and Elizabeth! Thank you so much for asking me to contribute to the disability and fandom episode. When I first wrote in and requested this topic, I felt like my fandom and disability experiences were largely separate. TV and movies are pretty consistently ableist, so there isn’t much canon rep in the fandoms I’m in, and I never encountered a community of disabled fans or a central place for us to gather. If I’ve just missed it and another listener can enlighten me, please do let me know.
But disability is important to me, on a personal and political level, so eventually I started involving my disability in my fandom activities. A cosplay that included my wheelchair, of a canon disabled character, went mini-viral and a lot of people outside my small circle of followers liked it. I started working on a big fanfic with a friend, and made a canon non-disabled character disabled. I was able to connect with a few other disabled fans on a larger fandom Discord, and most significantly, I wrote a piece about disability in Black Sails for the zine that the fandom recently put together.
I’ve been really lucky not to meet outright ableism or abuse, which I’m pretty sure has a lot to do with my other privileges like being white and thin. However, the thing that’s still missing for me from most of these experiences is a deeper level of engagement, especially from non-disabled fans. I received lots of nice comments on my fic and my cosplay, but few of them acknowledged the inclusion of disability at all, even as I got the sense that this might be what was drawing those commenters to my work in the first place.
It often feels like disability is completely invisible to fans, even those that make an effort to be intersectional around other marginalizations. I see people include mobility aids and facial scarring that are not theirs as props in cosplay, and no one bats an eye. I see maskless photos from huge inaccessible convention halls, effectively barring disabled and immunocompromised people from attending. I’m not the fandom police, I don’t want to enforce masks or take people’s cosplays away, but I would love for disability to be a part of the conversation and for disabled fans to be centered in more physical spaces and online communities.
The best experience I’ve had in this regard was definitely writing for the zine. Some of the editors were also disabled, and they really pushed me to make my piece the best it could be, and I did feel like at least a few readers genuinely engaged with my writing. I would like to have more of these types of interactions, and I would like to see many more disabled fans give this kind of platform and engagement.
Thank you so much for doing this episode; even just beginning this conversation will go a long way to making disabled fans feel heard and included, which I think is something that many disabled people are craving after the exclusionary messaging they received during much of the pandemic. Keep up the good work.
FK: Wow, that’s a really insight—I mean, it’s weird to say insightful about something that’s somebody’s lived experience, but it really feels like it gets at the heart of something for me, which is the sort of…anxiety and avoidance that abled people, myself included, often show around disability, not wanting to talk about it, not wanting to engage with it, even when other people are, you know, clearly just being like, “Hey, look, I wrote a fic about this,” it’s like, “No no no, we don’t wanna go there.” I mean I could get psycho—I could try and psychoanalyze this, but I’m not a psychologist and I can’t really do that. But I just, I really observe that and I am really glad that Hannah brought it up.
ELM: Yeah, absolutely. Once again gonna draw parallels to other marginalized groups. I mean Hannah, obviously, herself is saying “I wish this was talked about,” right, included in the intersectional conversation. I absolutely think there’s a fear of people not wanting to…like far beyond not wanting to say the wrong thing or something, right? I, I suspect, I don’t know what’s in people’s heads but I suspect many abled people don’t know how disabled people feel about their own disability, right? And I don’t, I mean obviously I think that from everyone I know with every kind of disability, people also don’t agree, they don’t feel the same way about it, right?
FK: [laughs, overlapping] Yeah. Yeah.
ELM: They could have the same, they could have very similar physical or mental experiences and interpret it totally differently, and it can affect their lives totally differently. And I mean, obviously that’s true about race too, right, you know, or sexuality. Two bi people’s experiences can be wildly different, you know? For example. But I think that in people’s…in like, “well-meaning” people’s—I don’t know why I’m putting that in quotes, very cynical [FK laughs]—in well-meaning people’s attempts to be respectful, I think that can create a kind of distance, and Hannah talking about people complimenting her cosplay but not wanting to actually say directly like…
FK: Yeah.
ELM: To directly address disability while complimenting it, like oh, is that off limits? “Oh, that’s great, but oh, can I talk about that?” That kinda tension, that anxiety, I think really ties people in knots.
FK: I think that’s right, and I think that also maybe in a different way to other marginalizations, I think that people are genuinely afraid of themselves becoming disabled, and there’s a certain, almost contact fear that can exist in these conversations. You know? And that’s really sad. I mean, abled people have to overcome it. Like, that’s not on disabled people to fix.
ELM: Yeah. No, it’s true. I mean, I think that, you know, it is true, I feel like there’s a theme that’s been running throughout some of these letters, and the ones that we’ll be including in the other—and voicemails—and the ones that we’ll be including in the other episode, of it’s just not talked enough about. Right? There’s casual, passing ableism that people even think about, they’re just doin’ it, right, and then not a lot of conversation. And so you’re not actually even asked to confront it a lot of the time, if you do not have those experiences. And so I think that breeds fear, too, because it just feels like this, you know, closed-off topic that isn’t yours to speak on in any way.
FK: Absolutely. All right, well, shall we read the last letter for this episode?
ELM: The last letter for Episode #186A: Part 1?
FK: Yes. That, that.
ELM: Yeah. Do you want me to do it, since you read the other letter?
FK: Yeah, go for it.
ELM: OK, this is from Sandy, and they write:
“I’m a disabled fan: specifically I have chronic pain and illness that I’ve lived with for years. Thankfully, I can still watch TV and movies and think about them. I also play a few video games and read comics and graphic novels. You can find me on AO3 as Sasha_feather, where I occasionally post fanfic and fan vids.”
Side note: we’ll put that in the show notes. [FK laughs]
“Thanks to fandom, I have many friends who will engage deeply and critically about media with me. I’m grateful for these connections. My community is fans who are into social justice. Disability justice is part of the wider social justice framework, and of course many of us in fandom have one or more disabilities.
“One of my areas of expertise is accessibility. For ten years I worked on the Access Team at WisCon, which is a feminist science fiction convention. It was the first place in the world where I was able to recognize myself as a disabled person and to feel valued around that identity. My mentor in learning about disability theory was Jesse the K, and we worked with many others on the collaborative effort to make WisCon more accessible to disabled fans. You can read WisCon’s accessibility statement on their website. There is also information available on the Geek Feminism Wiki.”
We’ll include those links in the show notes as well.
“I am proud and happy about how these policies and ideas have spread to other conventions and spaces. One initiative I worked on was getting live captioning at the guest of honor speeches.
“Accessibility is a huge topic that is very valuable and interesting to learn about. I encourage everyone, disabled or not, to learn about accessibility, because it benefits everyone. Some examples of accessibility we see in transformative works spaces are content notes and image descriptions. These may be aimed at particular disabled fans, but often benefit others who are not disabled, an effect commonly called ‘the curb cut effect,’ after those dips in curbs where you can roll your wheelchair, bike, or stroller up from the street to the sidewalk. In my years in fandom, it’s been nice to see content notes spread from fanfic to mainstream media.
“Another major concern of disabled fans is representation. Recent, multi-million dollar movies still portray evil villains with facial scars (I’m thinking of Wonder Woman and the latest James Bond film), when they portray disabled people at all. Creative people who make art can seize the opportunity to learn about harmful stereotypes, and incorporate disabled characters who get to be full people. Fan works challenges can encourage people to focus on and celebrate disabled characters.
“Lastly I’d like to highlight disabled fans’ long-standing concern over ableist language. I say this not to police people’s words, but to encourage fans to be more thoughtful, creative, accurate, and compassionate in their language use. Ableist language is not just slurs. It’s insidious metaphors such as ‘blind’ and ‘crazy.’ ‘Blind,’ when used metaphorically, implies that if one would simply try harder, one would understand what is going on; a matter of will rather than of physical ability. ‘Willful ignorance’ is the more accurate descriptor here. Many insults such as ‘idiot’ are ableist in that they denigrate people with developmental disabilities. Even when meant affectionately, these words can still be harmful and can limit our understanding of disability. Changing one’s language can be hard, but I encourage people to view it as an interesting challenge that can help us all think more deeply about words. In my opinion the definitive text on this phenomenon is Susan Sontag’s book Illness As Metaphor.
“For further information on all of these topics, check out the community I moderate, access-fandom.dreamwidth.org.”
FK: Wow.
ELM: One more for the show notes right there. [laughs]
FK: [overlapping] Yeah, what a, what an incredible letter full of resources, full of so many things. Something that I really wanted to pull out was talking about WisCon, which I have been sort of observing from afar, I’ve never actually been to WisCon.
ELM: Oh, I thought you were gonna say “I’ve been,” and I was like, “You’ve been to WisCon? I didn’t know that!”
FK: [overlapping] No, I’ve never been to WisCon, I wish I had! But I’ve been watching as the, as WisCon has become more accessible and some of the discussions and the debates and things that have happened, things that have worked, things that haven’t. And I think it’s really, it’s really good to look at an organization that’s not perfect, but trying to do the work. You know what I mean? And seeing how that goes.
ELM: Yeah, I was really interested in that part, and hearing about it and from, and like you, kind of following this from afar through osmosis over the last decade, and it really strikes me, because I think, we’ve talked about this in the past with cons, when there’s real scale and when there’s real capitalism behind it, they wind up…I mean, we’ve talked about this also in the context of like, an all-white dude panel at San Diego Comic-Con is not gonna fly at this point.
FK: Yeah.
ELM: There’s too many people, there’s too many eyes. People know that that’s not acceptable anymore.
FK: Right.
ELM: Whereas I have been to small fan-run cons in the last five years, and listened to the opinions of a bunch of white people talking about race. You know what I mean?
FK: Absolutely.
ELM: So there is some pressure in that large commercialization, and I’ve not spent, I’ve not encountered San Diego Comic-Con through the lens of like, a wheelchair user or someone who uses any kind of mobility aid or whatever, it may not be a good experience. But from what I can see, it seems very buttoned-up and regimented, obviously—
FK: They’re really sort of trying to do things, right, it may or may not work.
ELM: There are accessibility lines, right?
FK: Yes.
ELM: There’s special sections, and yeah, it may not work, but it’s very very clear and obvious, and it actually is a place where I see more people using mobility aids than probably anywhere else in my life. That’s partly because we live in New York City, which is a deeply inaccessible city. [laughs] So. So, it’s really, you know, a lot of people I think can’t live here for that reason.
FK: Right.
ELM: All that being said, WisCon and what Sandy’s talking about here with their own experience working on it, is like…seems to me really exemplary of the, the change has to come from within. And thinking about all the small cons that I’ve seen or the horror stories I’ve heard, in tweet threads or whatever being like, “This is what just happened to me, they didn’t even bother to make it so I could get up from the floor of the conference room up to the panel stage.” You know?
FK: Yeah.
ELM: “There was no way for me to get up there without climbing stairs that I couldn’t climb.” That kind of thing.
FK: Mmm hmm, absolutely.
ELM: That has to be fan-led first and foremost, you’re not gonna have those external corporate capitalist pressures to try and be inclusive that you do at a giant space like SDCC.
FK: Absolutely, and it requires, you know, creativity and trying to figure out, I mean, creativity, prioritization, determining what can be done, communicating about things that can’t be done so that no one is shocked and horrified if something—and like, their con ruined—if it turns out that there’s something that isn’t going to be fixed, right? The transparency element, there’s just so much. And it’s so, it’s really good to see people making the effort, because it’s necessary.
ELM: And helping people figure it out, because in stuff like this there’s budgets. I went to a conference once for work, it was a tech conference, it was in the Mission in San Francisco, it was an extremely tech conference. [FK laughs] And they had a live transcriptionist they were paying for every speaker. That’s expensive, you know?
FK: Yeah!
ELM: And that person was at the top of their game, they could live-caption, you know, very quick speech, at exactly at the minute. And I was like, oh, this is what you could do, it’s like, yeah they cared but also they had, you know.
FK: Tech money.
ELM: Lots of money to do this. And a lot of cons aren’t gonna have that kind of thing, but it’s like, that’s not an excuse to be like, “Oh, we can’t afford it, so that’s the first thing to go.” Because then who doesn’t get to participate, when you’re like, “Oh, sorry, we didn’t have it in the budget to make it so you could understand.”
FK: [overlapping] Right, how do you get creative to get around that. You know? Like, use Zoom and their live captioning, which isn’t perfect, but is better than nothing, you know, how do you manage to figure that stuff out.
ELM: Yeah. So. So, I really appreciate Sandy doing the work and writing in to talk about doing the work. So yeah, thank you so much for writing in.
FK: All right. Well, I think that that brings us to the conclusion of Part A: Part 1? And there will be a Part 2/Part B.
ELM: Part 2: Part B.
FK: Wow, OK.
ELM: No—Part B—Part B…tune in next time for that one.
FK: [laughs] OK, we’ve, all right, anyway, there’s gonna be another one. So keep your eyes peeled for that.
ELM: Yes, if you are listening to this the day it comes out, it will be out in two days from now, we’re gonna do the same kinda staggering thing we’ve done for double episodes in the past. It’ll still be a day early for Patrons, and the next day for everyone else, but if you are listening to it three days after that, [laughs] it’s all there available for you right now. So go check it out.
FK: Wonderful. All right. This has been a pleasure, Elizabeth, I will see you in the next episode.
ELM: OK, talk to you in a bit, Flourish.
FK: Bye.
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