Transcript of interview on AMI-audio’s Live from Studio 5

On March 29, 2019, Talia and I were interviewed on AMI-audio’s Live from Studio 5. Below is a transcript of this interview.  We thank AMI-audio for supplying us with this transcript! For more information on AMI-audio, please visit www.ami.ca.

(You can also listen to the interview here.)

Live 5 – Nothing Without Us

MIKE ROSS: This Monday, a kickstarter program will be launched to fund the publishing of a new anthology called “Nothing Without Us.” The book will feature several pieces of short fiction by writers from the disability, deaf, and neurodiverse communities. Joining us now to tell more– tell us more, rather, are the co-editors, Cait Gordon and Talia Johnson. Thank you to both of you for being here today.

CAIT GORDON: Thank you for having us.

JOEITA GUPTA: Good morning. So, Cait, let me start with you. Tell us a little more about this book.

CAIT GORDON: So this book is just a fulfillment of a dream for me. In 2016, I went to my very first writers conference as an author. And I had noticed people like myself who use mobility devices. And I thought, I bet there are a lot of authors out there in the disability, deaf, neurodiverse community. So I thought, why don’t I try to connect us?

I started a little blog. And then from that blog, Spoonie Authors Network, I thought, wouldn’t it be cool to have some kind of anthology where all the stories are written by people in my community? And I didn’t know how to do it. I just expressed it to Nathan Frechette from Renaissance. And he said, well, Renaissance will do it.

And it’s just kind of spiralled in the most delightful way. And the thing I love about this anthology is that the stars, the protagonists, are people who are disabled, deaf, neurodiverse, identify as spoonies, manage mental illness. They are the stars of the show. It’s very thrilling.

MIKE ROSS: Talia, we hear the title of the book, it certainly can be reminiscent of nothing about us without us. That was a slogan that was a prominent in the disability rights movement. So when you go with “Nothing Without Us” as a title of the book, why? Why did you choose that title?

TALIA JOHNSON: We chose it intentionally because of the resonance with nothing about us without us. And in my activism work, it’s still a very common thread, particularly in Ontario right now with what’s happening around autistic folk being shut out of any discussion about what’s best for autistic folk, which is, in Ontario right now, the biggest disability-related issue in politics. So for me, it’s how the activism and the stories come together.

Because stories don’t exist in a vacuum. They come from a world we all live in. And to some extent or another, every story represents something with the author’s lived experience, whether it’s a straight white man writing a story or somebody else writing the stories.

JOEITA GUPTA: So, Cait, let me pick up on a term you mentioned a few moments ago. You talked about the Spoonie Authors Network. And you referred to people who might be spoonie. That might be a term that some of us are not familiar with. Can you define that for us?

CAIT GORDON: Oh, yes. Of course. Thanks for bringing that up, because I take it for granted. Spoonie is an identifier for people who are managing chronic pain or chronic fatigue. It was derived from– oh, gosh. I’ll never get this right. I want to say Christine Miserandino’s spoon theory.

JOEITA GUPTA: That’s right.

CAIT GORDON: And she was expressing to a friend how it feels like to be her on a daily basis. And she said, pretend that the tasks that you do every day are spoons. So getting out of bed is one spoon. Washing your hair is another spoon, going down to make yourelf breakfast. And I find it an amazing way to describe what it feels like to have limited energy.

I tend to identify as a spoonie. And the Spoonie Authors Network is a multicontributor blog for people who identify as spoonies, or disabled, or whatnot. I do believe in the diversity within disabilities, so I don’t really discriminate. If you are an author and you fall into this family, I will read your submissions for it.

JOEITA GUPTA: Talia, I want to bring you in here. Because the reason I asked about the Spoonie Network is because I think it’s interesting to realize that people who are able-bodied don’t often understand there’s so much diversity within the disability movement. Who is the target audience? Is this an anthology by and for people with disabilities? Or are you hoping that it would be a book that is received by a wider audience, which might be an able-bodied audience?

TALIA JOHNSON: For me, this is definitely a collection, and we’ve talked about, I believe for both of us, that we want this to be widely read. Now, that said, it’s not the typical disability stories in the anthology. We didn’t want things like inspiration porn where the disabled person only exists for the edification of an able person, for example. So the stories are not at a 101 level about disability. But I think people can handle it. I think often people are not given enough credit for being able to read stories outside their own experience.

MIKE ROSS: And, Cait, you were going after some very specific sort of content here in the way you wanted to deliver these stories. And the important thing in submitting a story here was that we’re not looking for inspiration porn here. So how did you get that sort of, I guess, warning across to potential authors out there about what you were looking for?

CAIT GORDON: Well, I find that interesting, because the people who submitted to us with lived experience did not need to have the term inspiration porn explained to them.

MIKE ROSS: Sure.

CAIT GORDON: I think we understand that a lot. I think we have seen us misrepresented in fiction in particular, as Talia said, as existing only for the able-bodied person, or we’re going to overcome our disabilities and be cured, or be like normal people. That didn’t really have to be explained, I found, particularly to the people who we ended up taking into this anthology.

And it was interesting that, if someone did know what it meant, they didn’t write us to ask because it would show up in other– like these inspirational stories which show up in people who we guess might not actually have understood what our lived experience is. The stories were either really off the submission guidelines or bang, bang on. It was really quite extreme.

JOETA GUPTA: I find with a lot of people within the disability community, they may not know the term disability porn, but they sure know what it is, you know?

CAIT GORDON: Exactly.

JOEITA GUPTA: So, Talia, let me ask you a little bit. This is an anthology that showcases so many different people and their writing. Can you give us a brief sense of some of the authors whose work you will have incorporated?

TALIA JOHNSON: Oh, jeez. We’ve got across age spectrum, a young adult through older senior folk, various disabilities, mental health, physical disabilities. It’s really a wide cross section of gender identity, orientation. We were hoping we would get the diverse representation, and we did. And I’m really thrilled that we got high-quality submissions from such a wide variety of writers.

MIKE ROSS: I want to throw out one here to both of you and get both of you to respond to this, given your experience on this project. Think about the publishing world, and the world of disability writing, and sort of these two worlds coming together here. And given the experience you’ve gone through, what do you think the world of publishing needs to know or needs to continue to learn and address when it comes to writing about disability? Cait, let’s start with you.

CAIT GORDON: These are such good questions. My mind is slightly blown here. The first thing that comes to my mind is I read something on Twitter. And I wish I could remember the author, but I cannot. And this person’s work was rejected because their autistic character wasn’t like something in a show like “Atypical” or blah, blah. So the autistic author’s story about an autistic person wasn’t autistic enough for a publisher.

And I feel that what publishers like Renaissance need– publishers like Renaissance really make it their mandate to embrace diversity in from all kinds of intersections. Publishers who do not do that, I wish they would read stuff written by us, and not just these kind of caricatures of what people think disabled people and such are like. And the thing I love about “Nothing Without Us,” it’s like Talia said. The stories really– I think they’re going to be quite unexpected.

And I would love publishers to read these stories and learn that, hey, these are the tales that we want to tell. We are the heroes. We are the romantic interests. We’re not just side line afterthoughts, if we’re thought about at all.

MIKE ROSS: Talia?

TALIA JOHNSON: Yeah, I agree. I believe it was Ada Hoffmann who tweeted about it but wasn’t the author around that particular incident. It was a few months ago. And I would add that one of the problems with a lot of publishers is they don’t have diverse staff, so they don’t have a lot of people of colour. They don’t have a lot of disabled folk. They don’t have people who fall under the wide LGBT umbrella reading the stories and making decisions on them.

And in my moments of extreme frustration, my opinion is they need to deal with their cranial-rectal inversion, because they really don’t have a clue about the wider range of experiences in the world. Yet they’re deciding what stories get published, which then perpetuate this idea that there are only certain types of stories that people have, so the disabled person who overcomes, the acceptable autistic person who fits a certain mould, et cetera.

JOEITA GUPTA: Cait, just before we go– we are very short on time, but I assume your website is where we can find out more about the anthology and the kickstarter campaign associated with it. Can you give us your website?

CAIT GORDON: You can find information on renaissancebookpress.com or on spoonieauthorsnetwork.com.

MIKE ROSS: Perfect. Thank you very much to both of you for being here today. And we wish you all the best moving forward with “Nothing Without Us.”

CAIT GORDON: Thank you so much.

TALIA JOHNSON: Thanks for having us.

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