Writing With A Disability: Q & A with John Wiswell by Kathryn M. B. Johnson

This month I’m featuring John Wiswell, a writer of science fiction, fantasy, and horror with a touch of humor tossed in for good measure. John has a neuromuscular disorder, and yet manages to live a very good life. Like most of us, disability is not something we dwell on, but a fact of life we deal with. John is funny, talented, and caring. He knows a little something about writing disabled characters too!

It is difficult to find individuals who are open to discussing disability or writing with a disability. John is not that person. He was gracious to accept my request for a Q & A on how he writes with a disability, and how he feels the disabled should be written.

Please tell us about living with a neuromuscular disorder.

It beats the only alternative, which is being dead. Dead people eat far less chocolate. My condition means full-body pain which intensifies with physical activity and stress, and which directly impacts my respiratory and immune systems. My lungs would love to secede from the union, but my heart’s not in it.

My exercise regime is primarily to increase my threshold of pain, and to improve cardiovascular conditioning second. You want a good threshold because it lets you put up with more. The hypersensitivity has begun to wear out my hearing, which is why if you introduce yourself to me at a party, I absolutely guarantee I am only pretending to hear your name.

As with hearing issues, my physical limitations mean a life of patience. There’s nothing important that I can’t wait for, whether it’s spending the extra fifteen minutes to walk more carefully on my way to the mail box, or in lending an ear to a friend in need. Everything I’ve put up with has made me a better friend.

Do you believe a person living with your neuromuscular disorder affects what a person can, or cannot do in life?

Of course, it does. I am physically incapable of working a 9-to-5 job. I cannot live alone. We all have our limitations, and I heed mine to figure out what I can do.

Last October I drove across Massachusetts alone, the farthest I’ve driven in my entire life. I’ve written novels and I’ve intervened to stop suicides. There’s no end of important work that the chronically ill have a calling for on this earth.
As I said before, my way is about patience. Patience for what you can do in each hour or day is vital. Over the hours of such mindfulness, you build a life. *laughs* Mine’s got a lot of puns and Horror movies.

What motivates you to write despite emotional or physical challenges you face? Did emotional or physical challenges become the reason you write?

At age thirteen, as the victim of medical malpractice, in more pain than I’d ever imagined and alone in my bedroom, J.R.R. Tolkien sent me a gift. Not addressed to me – I mean, the guy was dead. But his The Hobbit and Lord of the Rings, and Stephen King’s Needful Things and Nightmares and Dreamscapes, and Michael Crichton’s Jurassic Park and Terminal Man, and a box load of mainstream thrillers, were all direct gifts. Every turn of a page or flip of an audiobook cassette was my best reason to live through another night. More than to share the struggle of my health, I wanted to write stories that could do that for other people who would be where I was. I wanted to do that for other people. I’d loved storytelling before, but that’s what set me on this path.

So, were you always a writer?

Only enough to pass English class. *laughs* I was awful. I’ve still got a 99-cent notebook with a half-finished 13-year-old John Wiswell’s The Dragon Knight hidden in my room. Part shame, part pride. It took years to get to a decent writing level, and I can’t even name all the teachers, editors, and friends who helped me get there.

Can you tell us about your current writing project?

I’m going to be a little vague since this novel doesn’t have representation yet. *laughs* It’s an intersection of Fantasy and the Prison Industrial Complex. We have many stories about the Evil Empire being taken down by a brave heir-to-a-throne, or warrior, or nobody-hobbit-and-his-Samwise. I’m using the lens of Fantasy to instead show people unfairly imprisoned standing up to the political and economic forces that stuck them there.

There is no single heroic Robin Hood or Nelson Mandela, so much as there is a community of prisoners who have the chance to become a group heroism. Any single person’s heroism is an illusion, but a useful one because it can inspire others to keep up a bravery they don’t even know they have. I’m madly in love with the project. I’d love to come back and talk more about it in the future.

On the shorter side, I’m finishing up an essay for Fireside Magazine on disability in Horror. Specifically, the three big fiascos of disability in Horror in 2016: the stigma of mental illness in 10 Cloverfield Lane, the evil blind man in Don’t Breathe, and the hot mess of ableism that is Donald Trump. I’m sure no one will yell at me over that piece!

What is your writing schedule like when you’re working?

First thing in the morning I review the work I must get done that day before checking email, Twitter, and Reddit. The social media time lets the work gestate in my head, but once I’ve done my round, I work through until lunch. If I’m sluggish, I’ll eat at the desk and keep approaching the scene from different angles, but I always want to make progress before breaking for exercise. I just can’t trust myself to postpone work into the evening, though I am happy to come back in the evening to do more work if I’m on a roll.

What advice can you give to other writers who may have a disability, or a challenge who aren’t sure if they can share their stories, or write a book?

If it’s a challenge to share the stories of your disability, remember that you don’t have to start there. Write whatever engages you. Write fanfic, or LitFic novelettes about elves that race cloud cars around Saturn if it’s what makes you happy. Especially as you develop your style, it’s important not to impose extra anxieties on yourself, and relaying burdens can sometimes do that. It can be difficult to articulate in prose what’s haunted you in life. Approach it when you’re ready, and as you read more, pay attention to how it’s addressed in publishing, and how it isn’t.

Keep an inventory of the vacancies in our fiction where your stories should be. When someone recommends a book because they think it will reflect your experience, and instead it reeks of phony inspiration? When authors pay lip service or perform only superficial inclusion? Shrug these instances off, but don’t forget them, because those are the space you get to break open like no one has before you. That way by the time you’re confident in your ability, you’ll know the places that need your contribution the most.

What advice would you give to those who want to write a book or story using a character who lives with your disability?

Well, you don’t write an able-bodied person obsessing over how much pain they aren’t in, right? Do me the same kindness. Write the character doing something other than fighting a physical disorder. The disorder is a facet of my life, but it’s not how I think about myself most of the time. I think about literary theory, the latest Mamoru Hosoda film, or The Joker. I think about the Joker way too often.

Consider Jo Walton’s beautiful novel, Among Others. It stars a semi-abled teen girl, but your first impressions of her are that she’s a judgmental nerd. Even when physical therapy is the subject of a chapter, it never feels like it defines her for the book. You want to research so you get medical and cultural facts right, but never forget to make them people.

Many writers, especially aspiring writers, want to know the edit and rewrite process of published writers. Tell us what your style of editing and rewriting looks like.

In first composition, I write passionately, often thousands of words per day. Once upon a time it was a few hundred words, but I built up to this. With novels, I start with a skeleton of the events that absolutely must happen and then make up the rest on the fly. With short stories and flash fiction, I’ll just let loose and write towards a few plot beats.

I’m a big believer in letting an early draft breathe. In almost all cases, when I’ve cleaned up a first draft enough to feel it’s finished, I save it and move to other projects. In a couple weeks or months, I’ll come back to it and review it with less familiar eyes. This greatly helps in cutting and shaping the early draft into something more functional.

When it’s as good as I can get it with a reasonable amount of work, I ask betas to read it. Their feedback lets me know how many more rounds of drafting it needs. If I’m lucky, the first round of feedback lets me finish a short story in an afternoon. *laughs* I’m not a very lucky person.

Is there anything else you’d like to share with us on the topic of disability and writing?

This is my weird issue I carry around all the time, but I would love more stories where characters with different disabilities meet and bond. Remember in The Stand, when Nick Andros meets Tom Cullen? Nick is deaf and relies on writing, while Tom has a cognitive disability and can’t read. The two of them meet in the post-apocalypse and are so jazzed to find another living person, and becoming one of my favorite road duos ever. This kind of intersection of disabilities so rarely happens in fiction. It’s even wilder because Nick fails to explain his disability, but Tom figures it out because he remembers meeting another deaf person before.

Disabled people, just part of a world and thought process. Rad! For any flaws, King had in disability representation, that model still sticks in my heart. Mishell Baker’s Borderline also does some cracking work with this. I’m excited for her sequel, Phantom Pains.

So more of that, please. And fewer stories where it’s the lone tragic paraplegic surrounded by the non-disabled people who pity them.

Oh – and if you’re writing someone else’s disability, you already know to do the research. That means medical research, but also reading accounts and fiction by people with the condition. I appreciate it when someone remembers their inspirations like this, and shouts them out. If you don’t care enough about their work to recommend it in public, or to signal boost them and their causes, then why write about them in the first place? Our culture gets stronger when we’re mutually supportive.

Kathryn Johnson lives in the Shenandoah Valley of Virginia with her husband Chris and three Bengal Domestic cats who often seem far from domesticated! She writes while watching pine trees dance, and clouds make pictures in the sky. She writes with, for, and about disability at kathrynmbjohnson.com and kmbjohnson.com. You can find her on Facebook and Twitter.