This is the first episode of the Spoonie Authors Podcast, a podcast dedicated to exploring the lives and stories of disabled authors. This episode features an interview with Cait Gordon, founder of the Spoonie Authors Network!

Don’t like the podcast format? You can also view the podcast on YouTube. (Closed captions are available for the YouTube video.)

TRANSCRIPT

Transcript done by CJ Clougherty, @PadfootPGH

Dianna: Joining us today is Cait Gordon! Cait Gordon is the author of Life in the ‘Cosim, Stealth Lovers, and numerous short stories. She’s also the founder of The Spoonie Authors Network, and co editor of Nothing Without Us: An Anthology About Disabled People, for Disabled People. And she really loves cake. Hello, Cait! 

Cait: Hello there! *laughs* Thank you for having me! 

Dianna: It is wonderful to have you! I’m very excited for our chat today. Unfortunately, because we are communicating virtually, there will be no cake. 

Cait: Well..okay I guess I’ll stay *laughs* 

Dianna: There will however be lovely conversations. And since this is the Spoonie Author’s Podcast, I thought it appropriate to discuss the Spoonie Author’s Network. So can you tell us a little about the Spoonie Author’s Network and how it came to be?

Cait: Well simply put, it is a multi-contributor blog of all kinds of people who fall under that umbrella term “spoonie”. We have people who are neurodiverse, people who manage chronic pain, people who manage other kinds of chronic disabilities, people who are hard of hearing. Um, I really don’t like to be a gatekeeper. I’m very welcoming under that term “spoonie”. It’s often a term reserved for people who have low energy levels, but that can be applied to so many different things, whether mental health, whether autistic burnout, or managing chronic pain or any other kind of disability. So we have a lot of different people there. 

Dianna: Because this is going to to be the first episode, can you take a moment to actually explain what spoon theory is for folks? 

Cait: Yeah! Now I always have to say this slowly because I’m bad at remembering names: Christine Miz-a-ran-dino, uh, created a thing called spoon theory to try to explain to her abled friends what it’s like to deal with low energy levels. She used spoons as a measuring tool: one spoon allocated per task. And we’re talking ordinary tasks. It might take me two spoons to take a shower and dry my hair. It could take a spoon to get out of bed. A spoon to even brush your teeth. People who manage different types of pain, for example, these are exhausting things. A lot of disabled people or people who manage chronic illness identified with it, and then the term “spoonie” derived from that. 

Dianna: That is an excellent explanation. Thank you. And so continue telling us about this blog. 

Cait: So I published Life in the “Cosim in 2016 and went to my first writer’s conference. Back them I was #DisabledandAlone. So I wasn’t part of disabled culture back then. At the writer’s conference I noticed so many people using different kinds of mobility aids, and I thought “Wow, these are only the disabilities and conditions I can perceive, there must be so many people here with invisible illnesses. And it would be really cool if we could all talk to each other, because there seem to be a lot of us who are authors’ ‘. So I purchased a domain and (that was in November of 2016) and I thought I would just create this thing with just me and one friend, and it turned out that a lot of people enthusiastically volunteered their time to share their stories. So I was really excited about that. I think we have 20+ contributors now. 

Dianna: That’s amazing. What kind of content do you all tend to share on the Spoonie Author’s Network?

Cait: All kinds of things! We have a series on disability tropes, that Derek Newman Stille wrote. Just wanting to show how poorly disabled characters are written in fiction. And some of the pitfalls and harmful tropes you can fall into. We have people talking about – uh, one of our latest, uh, posts is author Jameson Wolf  talking about his cats are muses *laughs*. And I’m like, yes! Actually I did ask him if he would do that, because I had noticed his cats played a huge role in managing his disability, and also in inspiring his writing. So why not? We have a lot of things. We have frustrations with things that go on in the writing community, and with how people manage their pain but keep on creating. So yeah, totally check it out. I find as the editor that I learn from other people. I’m like, I love this! *laughs*

Dianna: So what has been the most exciting part about building the Spoonie Author’s Network? Has it been the community, the things you’ve created?…

Cait: It definitely was the community for sure. Absolutely the things I’ve learned but I think the most exciting thing was it was inspiration for The Nothing Without Us Anthology. And finding out that there are so many different writers out there creating content. And I thought wow, wouldn’t it be cool to have just disabled, chronically ill people writing their stories? This happened because Renaissance is the best publisher in the whole universe. Just having an actual tangible anthology with great disability representation is pretty…that’s pretty darned exciting.

Dianna: This is a very exciting book! And I really enjoyed attending the launch for Nothing Without Us  in Toronto. It was a fantastic event.

Cait: Yay!

Dianna: Do you want to talk more about working on that anthology and sort of the process for that?

Cait: So it was one of those things where it was idea in my head and then I was sitting at the Renaissance vendor booth with Nathan Frechette the publishing director of Renaissance, and I said you know I’d really like to put an anthology together where it’s disabled creatives but I don’t exactly know the process. And I didn’t realize that was my pitch! *laughs* I accidentally pitched a book, cuz Nathan just said Renaissance would do it. And as it was getting closer to creating the formal pitch I realized: I can’t do this all by myself because I’ve never been an editor-in-chief of an anthology and oh my gosh what am I going to do? And so Nathan said “well why don’t you get Talia (this is Talia C Johnson) to co-edited with me?” And Talia happens to be my best friend, and if anybody knows Talia and myself we are likened to Pinky and the Brain so my first reaction was: what could possibly go wrong? But everything went right. Talia and I just clicked and we put together the call for submissions. It was really interesting because she’s in Toronto and I’m in Ottawa. So we have to rely on technology as our accessible way of communicating. We would even write our call  to submission or a to-do list at the same time using different software. So that was awesome. And then the stories rolled in and we are pretty much on the same page for a lot of them. There were some not written by disabled people and those are a little bit more obvious. *laughs* We’d say what we thought the rejection letter should be to get that out of our system, but then write the professional ones! Yeah it all came together really gorgeously. One of the things Talia and I didn’t want to do is: we didn’t want to put on work in there. We wanted to have space for other people, and it was good cuz then we can just concentrate on being the co-editors. And one last thing I have to say said this is the best news for me: I always wanted to have this anthology taught and it’s correctly part of a curriculum and Trent University in a Canadian Disability studies course so that’s like super amazing. Go us! *laughs*

Dianna: That’s really awesome! And it’s amazing how the internet has these opportunities to work with people, not just people who are far away. I have actually had the opportunity to interview authors for this podcast who are homebound because we can use things like Skype to communicate. And that’s such an amazing thing. Technology is so amazing for disabled people. As  a fantasy writer a lot of what I’ve been learning as I’ve been thinking about disability in my own world, is just how horrible being a disabled person has been throughout history. 

Cait: Exactly! It’s still a little bit terrible! 

Dianna: It really depends on where you are in 2020 as well. 

Cait: Yeah. I mean. I-I better quantify that: I actually really don’t have a problem with being disabled, you know managing my disability, I’m okay with that. It’s…the thing that’s annoying is inaccessibility and lack of accommodation and ableism. I think if we lived in a place that considered accessibility and accommodation, most of us I reckon would just go and do our lives and that’s it. So yeah so it’s not really…I don’t personally find it so terrible being disabled, that’s my own voice perspective on it.

Dianna: I think it really depends. Everyone has a different relationship with their disability and what really has been horrible for most of history, to clarify, is, there’s a lot of stigma now but wow it was so much throughout all of history. Even from a Canadian perspective. It’s still terrible, honestly, yanno, close to the United States for a lot of people. 

Cait: Absolutely! And if you’re talkin about history well then we can talk about language very briefly, right? I mean, a lot of the words that I kind of will make sensitivity changes to when I’m editing stuff now are words that were based on mocking people with intellectual disabilities, mental illness, and such. And it’s  so ingrained in our language, and I think it’s interesting how far back those words go as well to make us less than other people.

Dianna: Absolutely! I had the opportunity to talk about exactly that at a feminist conference last year. I was specifically dissecting the word “crazy” And today one of my favorite YouTubers, Jessica Kellgren-Fozard, just released a video about the word “dumb”, and a history of the word, and how, you know, language has been shaped to belittle disabled people, and how a lot of those words have passed on into everyday usage. I’ve been working on a side project about that for a while on and off cuz I’m not really sure what shape I want to be. And so I was so thrilled to see her making a video about that cuz she has half a million followers. So having something with that kind of reach is a huge step forward. And I’m really glad that these conversations do seem to be happening more.

Cait: Yes exactly! And I mean, when I wrote my first book again I wasn’t part of disabled culture! So I just used the language that we’ve all been entrenched with, you know? I’d say things like “that’s crazy awesome!”, it was a commonplace expression back then. And  – and with my first book I’m going to be coming out with a second edition where I actually tone down a lot of those phrases. I know some authors just say “well that’s the way it was at the time, I’ve changed now” but it kind of bugs me a little bit. So I was really lucky that Nathan from Renaissance  is willing to release a second edition where where I just kind of filter out a lot of those or replace a lot of those word I’m finding being an absurdist humorist is great because if you don’t have those words you got to make up something else and I found it underscored the ridiculousness of some of my characters even better, so.

Dianna: Perfect! Speaking of your characters: so you have written a variety of characters with a variety of disabilities in your own work. What have you learned about disability and about accessibility by writing these characters?

Cait: So that’s a really good question. I’ve got to talk about something that’s not published yet, it’s the latest work-in-progress. I’ve nicknamed it my disabled Star Trek. It’s a work called Iris and the Crew Tear Space a New One, and it comes from a short story I had written that a friend of mine insisted must be a novel. And I’m turning it into a series of 11 episodes. So my chapters are like episodes. And in Iris and the Crew, to how we would perceive them, they all have some kind of disability or neurodiversity. But in their world everything is so accessible and accommodating that they don’t actually know what the word disabled means as applied to a living being. They only think equipment can be enabled or disabled. So they have no idea and when someone accidentally, a janitor in one of the first episodes called “The Intergalactic Janitor”, gets accidentally zapped on to their ship from NASA while cleaning equipment, um he says “You’re all disabled” and they don’t get it, right? Does he think we’re all dead, so we’re no longer actively – abled? And they try smiling at him, which makes him nervous. And then he gets sucked back to his time by NASA and the end of that episode  they’re like “So did we get it right?? What is a disabled person??” And then Iris says “I don’t know, I guess we’ll never know now. So I guess I just fantasize about a world where everything is so accommodating. So it’s – what I hope to learn through representing different disabilities is seeing different their lives would be in a completely accommodating world. These are all senior officers on a ship, you know, they’re all the heroes in the story. They’re not pathetic. They just are. So I’m hoping – also with input from sensitivity readers too – that I’ll have things nuanced for proper representation. I’ll be able to tell you a year from now or two how much I’ve learned, but I think this is a good exercise for me to just get really empathic.

Dianna: Yeah, and I think it’s really interesting to  design a world specifically designed to be accommodating to different kinds of people. A lot of people, when they hear the term accessibility. they think ramps and elevators and they don’t think any further. 

Cait: Right.

Dianna: But I’m sure there are a lot of other aspects that you’ve had to consider. Can you talk a little bit about that? 

Cait: Yes so while I was busy worrying about every other autistic human in the world and how they need quiet spaces, I didn’t realize that I myself am autistic. *laughs* I found out the hard way when I had auditory-sensory overload and was like “I must flee to a need a quiet space.” And then went “wait, I need a quiet space!” *laughs* Yes so, oh my God we have so many different kinds of accomodation. We don’t think about chemical sensitivity. There’s scent sensitivity, chemical sensitivity. We have to consider, you know, those kinds of things. One thing I feel isn’t considered enough is hard of hearing and d/Deaf accommodation. I – I –  I am hard of hearing myself, I would appreciate mikes at conferences. But I’m sure if I couldn’t hear it all I would feel completely excluded. There’s not a lot of interpretation whether it’s visual or done by someone who knows sign. Um, soo I think about that kind of accommodation a lot. Yes of course ramps and such, but even for neurodiverse people noise is a huge factor and while you don’t want to tell everybody at a con to be quiet and not happy to see each other, it’s great to have a space away from the event that’s just dead quiet. I’ve gone into such a space: it makes me feel like everything just kind of dials down and I can breathe, and I can think, and now I’m ready to go to the next thing. Those are just a few of the kinds of accommodations I can think of. But it’s vast! Like if you’re going to be an accessibility person for an event, you’ve got a lot of work to do. Um, I would say be gentle on yourself because accessibility is a huge thing, um,  and listen. Just listen when people bring up issues that they’re having and thank them and – and try to go forward with the accommodation

Dianna: Listen and understand that what you have seen is a really limited view of what actually exists in terms of disability and disabled people’s needs. Something really cool: I also follow a blind YouTuber: Molly Burke and she just did a video of taking her guide dog on a cruise ship. And it was this ridiculously fancy brand new cruise ship, and they actually had Braille that would tell you what floor you were on on the underside of the handrails. And I thought that was the cleverest thing!

Cait: That’s brilliant,  that’s amazing!

Dianna: Yeah, and that’s the kind of thing that I think that writers should really consider more when building worlds. Those little bits of accessibility that allow disabled characters to function in your world. Even if you don’t actually have any major disabled characters in your stories just like. Having a world that is clearly built with accessibility in mind implies that they are there, implies that they have always been there, and have actually been considered.  

Cait: Exactly. And you know there are people who do disability advocacy in – in different kinds of activists type way. I think my way is litor – literal – LITERARY WORLD there we go – (we’re going to fix that post people) but yes I feel that fiction in particular is such an influencer so if in all different works of fiction we do exactly as you say: just just have it there, it influences people that hey how come this isn’t here and in my reality right now? We should kind of do the thing! So fiction can be very powerful.

Dianna: Absolutely. So speaking of fiction, one of the biggest problems that exist right now is the limited representation of disability in the mainstream media. Can you touch a bit on what that looks like, what representation you have seen, and how you would like to see that rep – uh –  that representation change. We’re good at words! We’re writers!

Cait: We’re really smart too!

Dianna: We promise.

Cait: It’s funny: the first thing you that I thought of when you said media, my mind went to social media and all these inspiration porn videos. You know the types that I actually hate are like when you see able-bodied people picking somebody who’s sitting in their wheelchair out of like a dirt path because the pavement has run out. You know? And so it’s like clap clap clap for the able people who rescued the disabled person and what not. And I’m like “why did the pavement run out?” like that’s what’s on my mind. Like what’s that about? Or if you see a disabled person doing some really awesome with their fitness and “they can do it, why can’t you?”. That kind of representation doesn’t really help anyone and it’s not telling the story. I would love to see more of those non-fiction media stories told by the perspective of the disabled person. It would be really really different from what it’s like when you know abled reporters and such do it. But in terms of fiction representation time a Good Doctor episode, like a commercial, I just start screaming at the television.  I don’t feel comfortable with that representation of autism at all. I think it does lead to expectations that there’s only one way to be autistic.

Dianna: Can I pause you for a minute? I watch Netflix and only Netflix, I have literally no idea what you’re talking about. Can you describe a little bit of what the Good Doctor is and what problematic representation is?

Cait: Right okay well again I can’t bear to watch an episode so the clips that I have seen the good doctor is a young man who I guess brilliant at being a doctor  who’s autistic. And every time I see a commercial clip of it he he talks in a kind of a stilted way and says things like “I can experience empathy”. And I’m like “well yeah, of course we can”.  Many autistic people are hyper empathetic. I’ve been compared to a Betazoid from Star Trek so you know. And there’s this notion of kind of what I called the Rain Man representation you know: often – often a man, often a savant, talk in a way that uh might be a little unique, and while there might be autistic folks like that great but there is such such a vast spectrum of what it’s like to be autistic. And so those kind of cliches come up and they lead to things like I can’t remember her name but there was an author who is autistic, whose work was rejected because it didn’t reflect what they thought an autistic person should be like the Good Doctor or like Atypical or whatnot. So that’s, that’s not good, you know? If an autistic creative is representing themselves on the page, and you’re saying that’s not autistic enough, that’s the total opposite of good.  That should not happen. So those are my feelings about different kinds of representation, fiction and nonfiction.

Dianna:  Is there anything that you would really really like to see more of story-wise in terms of the types of stories you would like to see being told?

Cait: Well in the Nothing Without Us Anthology, we have a slogan: we are the heroes not the sidekicks. I don’t even care what kind of genre it is, I want to see  people in the neurodiverse, mentally ill, disabled spectrum and such write their stories, you know? And if they’re written for the screen I want to see characters – actors portray those characters who represent. I know as an actor you can have a full range of how you do your craft, but boy it would be so great  if an autistic character was betrayed by an autistic actor or a disabled person was portrayed by an actor who manages mobility issues. So I’d like to just see more more more of actual own voice because there’s not enough out there. And for me when I read Nothing Without Us it gave me a small insight into the stories that want to be told. So yeah, More, just more, any genre.

Dianna: Is there any other own voices works other than Nothing Without Us that you want to give a shout out to?

Cait: I – my very first introduction was A Journey of A Thousand Steps by Madonna Skaf. I think for that title is Madonna Skaf-Corrine . It is a Renaissance book. The protagonist is someone who manages MS just like the author, I found it a riveting story, and the way this character solves the mystery, solves the crime and has to remember things like “oh no I I left my rollator in the taxi cab again, I got to stop losing walkers that way” you know. And it’s just like, it was so great. If you first have a mobility device, you’re going to forget it in a taxi, that’s going to happen! *laughs* So yeah. Journey of a Thousand Steps was the only book I had known. And I think that’s another reason what inspired me to do the Anthology. I thought, people are asking me “do you know works” and I’m  like “I know one”. That wasn’t good either. Another shout out I would also like to put forward is for Jameson Wolf’s Little Yellow Magnets : that is his memoir of what his life was like when he literally woke up the next day and his body didn’t move the way it did the day before, which eventually led to a diagnosis of MS. What I like about it is it shows internalized and externalized ableism as well. He’s very very honest in that. So you can find Little Yellow Magnet, where to buy jamesonwolf.com a

Dianna: Awesome, both sound like great stories. And hopefully next time we chat you’ll have way more to recommend because I have a lot of amazing authors coming up on this podcast. 

Cait: Yay! 

Dianna: So I think it is about time to wrap things up. Where can people go to find out more about you and your work?

Cait: So the easiest way to get all the Cait – ness is to go to caitgordon.com .  I have a regular blog I do, all my books and works in progress are written there. And from there you can find out how to find me on social media and such as well.

Dianna:  Awesome of course for anyone who wants to check it out: spoonieauthors.blog I believe?

Cait: . Blog and .com