In honor of Disability Pride Month, founding Executive Director of I-CREATE YOUTH Jessica (Jess) Kim interviewed Sara Watkins about her experience as a disabled editor, publisher, writer, and human being.
Graphic with Text "interview with Sara Watkins, Published Author and Editor-in-Chief of Spoonie Press". Image of Sara with curly brownish red hair, red knitted scarf and gray sweater, smiling slightly with light makeup.
Sara Watkins (she/her) is an editor, author, UCTD-haver, and EIC of Spoonie Press, which is devoted to publishing work by chronically ill, disabled, and neurodivergent creators. She is also a big fan of deviating from the norm for her own comfortability and entertainment. Her writing explores themes of disability and autonomy using wry surrealism and general weirdness to champion the idea that, despite our differences, we are not alone. She is the winner of the 2022 MASKS Literary Magazine Story Award. Recent publications include work in Wordgathering, Vast Chasm, and Bitchin’ Kitsch. Find her at sarawatkins.net or @saranadebooks on Twitter and Instagram.
Sara, I'm so excited about Spoonie Press! You mention in your inaugural Editor's Note that the moniker for the journal comes from "spoon theory." Could you talk about how that theory has influenced your path to founding the press?
Spoon theory is a really understandable way of telling abled people, “My bandwidth fluctuates because of my disability, and here’s what that means.” I love sharing spoon theory because it’s a way to invite others into our world instead of conforming. People seem to really respond to it, too. I have quite a few able-bodied friends who now use phrases like, “I’m running low on spoons!” That makes me happy. Even though it doesn’t mean quite the same thing for them, I’m pleased when people take the time to care for their [mental or physical] health. Perhaps more importantly, it’s a term that has resonated with so many within our community in a positive manner, and so it was the natural choice when thinking of a name for the press.
Spoonie Press is more than a publisher; you all are a community. What's the value of having a community of disabled creatives and how are you creating one?
The value of being heard and understood is immeasurable. Similarly, to have someone even attempt to understand you can be inherently validating. Spoonie Press was born from the idea that others making the effort to hear, understand, and empathize helps to heal a larger wound. Disabled creatives of all ages and backgrounds face unique challenges that are deeply rooted in representation and accessibility. While one press can’t completely solve these problems, it’s important to me to do my part to improve the landscape. The main way we foster community (besides through publishing) is by maintaining a space where disabled, chronically ill, and neurodiverse people truly feel wanted, and then going the extra mile to support them and their work.
For me, going the extra mile includes things like:
Accessibility: Screen reader-ready material, using friendly fonts and spacing, creating alt text, online events with multiple ways to participate; rolling deadlines, etc.
Affordability: Our weekly magazine is available free online, as is our print journal. We also offer discounts on the print journal to whoever needs them— no questions asked.
Involvement: I share paid art and writing opportunities related to “spoonie-isms” in our free weekly newsletter and our Discord and Facebook groups (18+), along with general disability resources. These are also great spaces for spoonies to connect with each other over questions of the day, events, and creativity. The world can be isolating for immunocompromised people, especially now, so these groups are really important. I also curate a Twitter list of paid opportunities (#supportdisabledcreatives) and a Google Sheet of resources related to spoonie health and creativity— it covers everything from finding accessibility grants for your home to writing disabled characters sensitively and appropriately.
The world is hard enough; creative outlets shouldn’t be, too.
The articles, poetry, and art that are featured in Spoonie Magazine are very enlightening. From an editorial standpoint, how do these stories stand out?
The one thing that strikes me about the work received is the level of honesty and bravery within it. It always takes courage to share your story with others, but it’s on an entirely different level for difficult topics such as these. Many of our creators have experiences immersed in medical trauma and personal difficulties—it sort of comes with the territory— and there is never posturing or insincerity in the submissions. Often, there’s humor, hope, camaraderie, and so many other things that can feel elusive when you’re in the thick of a struggle. It’s really quite beautiful, and it makes me feel honored when people share their work with us; it shows how highly they think of the press. Similarly, I think these are the exact qualities that make our content invaluable to readers.
You also work as an editorial project manager outside of Spoonie Press. Why did you choose this path?
I fundamentally believe that storytelling is human nature, and I love stories of all shapes and sizes. As someone immersed in (and fascinated by) literature and communication, I’ve always sought ways to make the untold told. As I child, I believed that language was the key unifier to the world’s problems— if we could communicate accurately and completely, all our issues would be solved. As an adult, I’m not sure how true this is, but I chase that idea of fundamental understanding. My experience with disability has only made me more certain of the healing power that comes with connecting to others. Working with authors to help them share their stories truly makes me happy.
Disability representation is slowly finding its place in the writing and publishing industry, but there's still a long way to go. What do you think should change?
This is a fantastic question, and it’s one that I find difficult to answer completely because, to borrow a quote from Mean Girls (have you kids even heard of that movie? If you haven’t, go watch it.), “I just have a lot of feelings.” I am both a disabled author and someone who has worked in the publishing industry as an in-house editor for the better part of a decade, so I understand both the individual and industry side of things.
The major change I’d like to see is the inclusion of disabled authors, characters, and stories for reasons other than yearly diversity initiatives. Our experiences shouldn’t be reduced to marketing stunts; they should be included because… why wouldn’t they be? Disability is as natural and prominent a part of life as anything else.
Tell me about your story as a spoonie—the triumphs and the struggles. Has writing about your disability transformed the way you see your identity?
I was one of those kids that was always more sick, and sicker for longer, than everyone around me. I used to write about it (and other things) a lot. I wasn’t officially diagnosed until I was 25, though I had been “suspected” of having at least one autoimmune disorder since my mid-to-late teens. For context, I’m 26 now. A car accident in my early 20’s left me with a traumatic brain injury and post-concussion syndrome, and so, by the time I was also diagnosed with an autoimmune disorder, the whole kit and caboodle became a bit overwhelming.
I live in the US and, after a particularly frustrating hospital stay, I came home and wrote a small book. It’s absolutely bonkers and, as of yet, unpublished. It’s all about how poorly I felt I had been treated, but it’s written as a “guide” for doctors. For example, one page is a word search of medications that doctors are instructed to give to their patients and then prescribe whatever the patient can find— because they had me on a revolving door of medicines; one page is a cryptogram in which the doctor is instructed to share the patient’s diagnosis only if the patient can solve the puzzle— because my diagnoses were so inconclusive; etc. Writing this book was so, so empowering for me. It was my way of turning years of frustration into something that I actually liked. It made me laugh at a time when I felt that I had not laughed in very long.
Of course, absolutely no publishers wanted this book. Everyone wanted hopeful stories about how I planned to overcome these circumstances, or they wanted some novella in which I lamented all that I’ve lost. Neither of those things is my speed; I’m the type of person who complains loudly, laughs louder, and then picks herself up and does something about it. That was a sort of wake-up call for me, that I’m not suddenly a different person because my sickness has a name. This all led me to think about other people who might be in similar circumstances: How many people like me have had their truth shot down? I bought the domain name for Spoonie Press that night.
You write using "wry surrealism and general weirdness." Why is experimentation valuable in writing about disability and autonomy?
I’ll preface this with the statement that my style of writing stems from my own opinions and experiences related to disability, along with my generally flawed personality. I’m a wonky person. When I was in my late teens, I had a conversation with a doctor that went like this:
Doctor: Your lab results are normal. Me: This is the first time in my life I’ve ever been called normal… are you sure? Because I really do think there’s something wrong here.
Turns out, I was right; there really was something wrong there. But, in that brief moment, I was average. What a wonderful, incorrect statement! It still makes me laugh. No matter how others perceive us, all we can be is simply who we are. Writing (and art in general) is a wonderfully therapeutic way of exploring questions of identity and meaning. I tend to focus on disability and [loss of] autonomy because they have been some of the biggest influencers on my sense of self. Plus, more simply, odd things entertain me.
You're a freelance collector of tiny, fat dragons. Could you show us some of your collections?
I would love to! Here is a sample featuring our Lead Financial Officer, Prof. Kellen Archimedes Watkins-Robinson, esq. Yes, he is a professor, a lawyer, and a dedicated businessman. It’s probably worth noting here that Spoonie Press is solely run by my two cats and me, which is why a feline carries the title of LFO. You can distinguish Kellen from my collection in this photo because he is the one that is not a tiny fat dragon.
I-CREATE YOUTH is an organization that empowers, educates, and connects disabled youth through language in its various forms, from poetry to programming. We teach creative writing workshops, host fellowship and summer research programs, and curate monthly exhibitions featuring disabled changemakers, all in an effort to connect disabled youth and communicate their stories with the world. Learn more about us at icreateyouth.com.
To request for an interview, please email icreateyouth(at)gmail(dot)com