In this interview we talk with Patrick (he/him) who deals with fibromyalgia and who owns a bookstore where it is disability pride month 12 months out of the year. At the bottom of the interview check out the link to read Patrick’s curated disability book lists.

Hello Patrick! It is great to talk with you today. Could you please tell us a little about yourself?

Hey Sarah, thanks for having me. I live on, to the best of my knowledge, Erie, Kaskaskia, and Mississauga land currently known as the city of Cleveland in the state of Ohio.

I run a pop-up bookstore with dreams of a brick and mortar reality. All my new titles are by and about disabled, chronically ill, neurodivergent, D/deaf, blind, deafblind, mad, and otherwise identified folks. This can be difficult for many reasons: authors might not want to publicly identify due to very real concerns around sanism, ableism, and privacy. Publishing catalogues don’t really have functional search categories for disability like they do for queer, race, or religious based identities. There’s also many tricky ethics questions, such as claiming disabled ancestors who didn’t use that term, either because the language surrounding disability was different, disability wasn’t seen as a social category, they might come from a background with different beliefs or stigma around disability, or for a myriad of other reasons.

I spend a lot of time thinking over these complicated knots and hope that reflects in my selection of books. I curate with a focus on disability fiction and disability justice titles. People tap into fiction and nonfiction differently, and fiction and nonfiction tap differently into us, so I want to cast the widest net. The store is an anti-capitalist effort as I personally believe that capitalism and disability are incompatible. I’m hoping to lean into the legacy of other activist and social mission bookstores. I’ve taken a lot of inspiration from Blue Stockings, Red Emma’s, and other bookstores in that vein.

I’ve been at it for about a year now, and it’s been way more successful than my modest goals starting out. Though we’ve rightly celebrated the glimmers of disability representation, there isn’t much space made in mainstream society for disability, whether that’s physically, representationally, or conversationally. It’s especially not reflective of the sheer numbers of disabled folks. People sometimes ask me if I think the population of disabled people is big enough to support an endeavor like this. Setting aside the fact that other disabled people aren’t the only ones interested in our stories, these folks are always shocked that roughly 20% to 30% of our total population is disabled. This idea of disability as a rarity persists in a large part because of a lack of media visibility.

So of course, when people don’t see themselves in media, they don’t just stop. They seek it out. A lot of people turn to books to discover this new identity they’re embracing, seeking recognition that is severely lacking in much of pop-culture, or to understand how to best love a disabled friend or family member. Many folks, disabled and non-disabled, can struggle with the basics. They don’t have the language, and out of fear of giving offense, often avoid the subject. It’s an amusing thing how frequently non-disabled people will ask disabled people how we’re doing, and then when we tell them, they get uncomfortable. Books are a good remedy for that sort of reluctance and/or uncertainty.

Right now it’s just a one person show, but I’m in the process of converting it to a cooperatively owned project. It just makes sense in a lot of ways, both practically and with my own beliefs, but it also is just a natural fit for a disabled bookstore. Disability isn’t monolithic, and having folks with a variety of disabilities and an equal stake and say working together will give us better insights into curation, accessibility, event planning, how to organize the store, everything really.

Do you have a diagnosis for your symptoms? How long did it take for you to get a diagnosis?

Fibromyalgia is mostly a mystery condition. The salient points are that it causes chronic pain and fatigue with a wide variety both in symptoms and severity. It’s not really understood what causes it, though I’ve been told the most current research points at it being a nerve disorder. For me, it began as a dull, post bike ride throb in my knees. This wasn’t a huge surprise. I come from a family with a long history of joint problems, I played a lot of soccer growing up, and I was heading into my thirties. It was earlier than I thought, but I’d heard enough stories from aunts and uncles to expect it. Then the pain spread to my heels. My hips. Shoulders. Elbows. Wrists. Fingers. I couldn’t make a fist because of the pain. My jaw ached whenever I chewed. At its worst I couldn’t hold a book because it was too much on my wrists, had plenty of days where I couldn’t walk, had just one foot swell up so large it couldn’t fit in my shoe, and some nights even the weight of my bed sheet hanging off of my toes caused my heels to ache. There’s also some strange fluctuations. My body doesn’t seem to regulate temperature as well as it used to, and my memory is no longer as sharp as it was (not that it was particularly sharp to begin with).

Today is a different day, though. My care effort is a lot, with multiple doctors’ visits a month if not a week, dietary changes, a monthly procedure, multiple medications, and yoga, swimming, and other low resistance, full body exercise. The admin and care itself drifts between a part time and full time job depending on the week, and of course there’s the constant anxiety of threats to cut medicaid bandied about in the political sphere. Chronic pain and fatigue are still a daily part of my life (after a pop-up I typically need a full day to recover), but it’s got nothing on my pre-treatment days.

I think all diagnoses are a mixed bag. Mine took about three years to receive. It allows me access to care and resources I couldn’t afford otherwise, but that’s less the benefit of a diagnosis than an indictment of our medical system. There are also those (including medically trained professionals!) who will cast doubt on any experience that can’t be verified outside of the person’s own words. This ranges from the casual cruelty of disbelief to the aggressive hostility of being labeled drug or attention seeking. On the flip side, having a name for all of this allowed me to connect with other people and was the beginning of my journey to claiming disabled and disability as an identity.

How has your experiences of the world changed since your symptoms started?

Such an odd thing to think about. In a lot of ways, my whole world has changed. Disability and ableism were only fuzzy words on a distant horizon. Now they’re two dominating forces in my life. I’ve learned so much from this journey. My own sense of self-worth and how we value (or don’t) people in this society. How to slow down. How to have grace for myself, a grace that has extended to others. The struggle of advocating for yourself. How good it can feel to say No. I can say that I have radically changed as a person, and the bodily changes that spurred this on isn’t the biggest change about me.

Is there anything you would like people to know about disability in general? 

I think there’s two things I would like to convey to non-disabled people.

First, refusing to seek care is often itself a type of care. Dealing with a dehumanizing medical system is a constant stressor, and our healthcare is bewilderingly difficult to navigate. Even the very hospitals we move through are often poorly labelled labyrinths that take multiple visits to figure out. Medical trauma from callous doctors, nurses, and tertiary staff, as well as the overarching systems and executives who dictate profit before care, is very real. I have had many months where I would rather grapple with my pain and fatigue issues at their current level than deal with these “care” systems for the chance of increased relief. Too often, disabled or sick people who don’t seek specific types of Western medical care are then blamed for their health or are somehow described as “deserving” of whatever struggles they may have. Instead, non-disabled people need to realize that these systems often beat down people who came to them for help, then blame them when they don’t come back.

Second, if someone is talking to you about their disability/illness/condition, you don’t actually have to say anything. Personally, I mostly need someone to listen and try to understand. Not even succeed! Just try. I’m not looking for you to “solve” or “cure” me. People’s discomfort with disability and pain often leads them to push answers on me or try to give me something. I’ve even had people become visibly angry with me when I explained to them why these answers aren’t realistic! The root of this answer pushing is always their own discomfort. It’s understandable. It’s hard to see someone you care about struggling and/or in pain and feel like you can’t do anything. But so often if those people would listen first, they would actually be doing a lot more than lobbing answers that, I promise you, I have almost always thought of well beforehand.

Thank you Patrick!

Check out Patrick’s curated reading lists for Nightlight Books here on Bookshop! The books you buy through Patrick’s lists on Bookshop create profits for Nightlight Books. Also, make sure to follow along on Instagram: nightlightbookscleveland  “for the latest in the world of disability lit where we do disability pride twelve months a year.”