|Photo: Dov Zeller
Who are your favorite writers? They need not be disabled/neurodivergent.
I have a lot of favorite writers and I like a range of forms and styles. I love Lynda Barry, Kate Beaton, Rutu Modan, Marguerite Abouet (comics—I could go on and on). Also there are a lot of graphic memoirs about illness and I tend to find them much easier to read and access than prose memoirs.
Zora Neal Hurston. Rebekah Solnit. Oliver Sacks. Ed Yong. Maria Popova. Sam Kean. (Prose of all kinds—essays, science writing, fiction, non-fiction…) (Just to nerd out, here is a list of women science writers http://blogs.discovermagazine.
com/notrocketscience/2012/10/ 16/happy-ada-lovelace-day-a- celebration-of-women-science- writers/ )
There is a group of writers who I put in the category of writing (Jewish) existential slapstick—Clarice Lispector, Cynthia Ozick, Fran Ross, Grace Paley, Bruno Schulz, Sholem Aleichem, Bashevis Singer, Meir Shalev, SY Agnon…These writers have really intrigued and inspired me.
Some books I’ve read recently that I’ve loved: The Sound of a Wild Snail Eating by Elizabeth Tova Bailey about having CFS/ME and cohabitation with a snail. The Last Chicken in America by Ellen Lipman about Russian Jewish immigrants in Pittsburgh’s Squirrel Hill, and fracturing of communities and identities that can happen when immigrant parents are more connected to communities from the “old country” and their kids are living in completely different cultural worlds. Her Body and Other Parties by Carmen Maria Machado is a vivid, bleak, funny collection of short fiction. Circadian by Chelsey Clammer a book of essays that playfully and seriously struggles with and against the form of the essay—what is meaningful to write about and how to write about that which is meaningful. She connects written language to trauma, to speech, to music, in ways that are rhythmic and percussive, but she also breaks through the veneer of craft and acknowledges the messiness of writing, of trying to shape language. Genderbound by Calvin Payne-Taylor is a memoir of his medical transition. It’s poetic and raw and touching. Elegiac. Avi Cantor Has Six Months to Live by Sacha Lamb is a novella length work about a trans teenager struggling with depression and alienation, and a trans guy he becomes involved with with, and the turmoil and warmth between them as they try to connect and how trauma and vigilance make intimacy an ongoing struggle. It’s tender and funny and has guest appearances by a demon named Lilit (Lilith).
There’s a great graphic bio of Glenn Gould out, written and illustrated by Sandrine Revel. The Book of Mistakes by Corinna Luyken is a beautiful picture book that celebrates the making of mistakes, which I think is important (and also, isn’t it much of what living is made of?) Pandora's Lab: Seven Stories of Science Gone Wrong by Paul Offit is a fascinating, horrifying, and really important exploration of the ways science can be used to harm people who are among vulnerable or stigmatized communities or viewed as “different” or “unruly”. He shows how non-objective and just plain wrong and how dangerous science (or things viewed as science) can be.… And Cannibalism: A Perfectly Natural History by Bill Schutt is another important book that looks at cannibalism throughout the animal world. Schutt does a lot in this book, including describing ways the idea of cannibalism has been used by western cultures as propaganda to justify extreme brutality toward non-western cultures. I’ve read a few other books by him and he’s a really engaging writer and storyteller.
I could go on. But I guess I should probably stop now…
The Right Thing to Do at the Time (your newest book) is described as Pride and Prejudice with elements of Fiddler on the Roof. What drew you to put your own spin on the classic?
Mainly, I really struggle with structure and organization. I have thousands of pages of fiction I’ve written—beginnings of stories, beginnings and middles of stories, three-quarters finished novels—a lot of projects I care a lot about but that are without sustainable schema? Functional formfulness? …Waiting for me to maybe some day try to reasonably reshape them?
Finally I got frustrated enough that I decided to do a retelling of Persuasion, thinking if I stuck to the structure of the story, I would keep things moving in a somewhat explicable direction.
I love Jane Austen and I think she’s a genius when it comes to structure. She takes a lot from Early Modern tragicomedy, a form near and dear to my heart, and one which I think really influenced (and influences) the novelistic form. It’s not about a combination of tragedy and comedy so much as narrative drama that looks like it will end in tragedy—comes close to ending in tragedy, or at least misery—and instead ends in marriage. Or marriages. Often several marriages. I wanted to use Austen’s structure but also subvert it, make it queer. Make it not all about romantic love. Romance is in there, but it’s not what makes or breaks people’s lives.
But, I’m getting ahead of myself. In 2008 or so I started to write a retelling of Persuasion. I was broken-hearted over a failed attempt at a relationship and was trying to turn it into comedy—trying to make myself laugh. Much to my dismay, though I was trying to follow Persuasion’s structure, over the next few years the story gradually became an organizational disaster of great proportions. (While in grad school, I went to an ADD specialist who told me my executive functioning skills were such that I should give up writing anything but the most abstract poetry…) It also became a Pride and Prejudice rewrite. I dropped it for a while and worked on other things. It wasn’t until after I got full-blown ME that I went back to it, cut the dinosaurs and time traveling out if it (for real). I cut most of it and then tried to stick more closely to the structure of Pride and Prejudice, this time understanding it may be my only hope to actually, ever finish something. I had so much fun with it at this point. It was a joy to write from there. I kept referring back to the book and film versions as I wrote, which I enjoyed, and which helped a lot. (I still think of trying a retelling of Persuasion.)
I have another novel coming out in late spring and that was also an organizational (and many kinds of) disaster. Fortunately it was my thesis project for the MFA program I was in and I got some great advice during my “defense”. I did two full rewrites over the next few years, the second one with editing help from Laura Mae Isaacman at Clyde Editing, whose work and guidance were invaluable (thank you, Laura! https://www.lauraisaacman.com/
). And then I got some wonderful feedback from my friend Hannah Doress, and the book came together in a way that felt good. I’m grateful for that. My hope is to be able to, as I work on projects going forward, keep the joyfulness and vividness and immediacy of improvisation and exploration, but with a bit more structural direction—moving away from the fully realized organizational disaster and toward something a bit more streamlined and manageable.
In the book, there are depictions of various types of love, with romantic love not in a clear position of superiority. How do you navigate and honor various types of love in your work when society emphasizes the "traditional romantic"?
I’m not quite sure how to answer this one. I guess for me friendships have always been of utmost importance. Maybe because I don’t have particular talents in the area of romance. I’ve always loved my friends pretty passionately and valued my friend relationships perhaps in the way others value romantic partners or family members in more “traditionally” structured families—though this is not to say I’ve had an easy time or done a great job of having healthy, sustainable friend relationships. I’ve had several really dysfunctional friend relationships and quite a few exploding bromances. It’s not that I haven’t had to work hard to get to a point where my friend relationships are more sustaining and sustainable. But, I’ve still cared very deeply about my friendships and close friends.
In TRT I wanted to honor the importance of friendships, and particularly the bromance, because as a trans guy, bromances, mostly with other trans guys, have played a really meaningful and important role in my life. Because a lot of us trans folk don’t grow up with role models in the way other people do. I mean, it’s complicated. So much behavior is learned, inherited, taken on and in from so many cultural and personal connections/intersections. It’s not like a trans guy can’t see any number of people of varying genders as role models. But in a way, I would say in the communities I engaged with as I was trying to become the adult I wanted to be, queer folks and non cis folks often “raised” each other and “raised” ourselves.
Also, when it comes to more conventional romance, in films and literature, I was dissatisfied with happily ever afters always having a cookie-cutter (?) look and feel to them. Like a heterosexual or even a queer couple kissing as the sun sets. And then nothingness. Like here you are, at the end of the story. A “successful” relationship is one that begins at the end of a story. What? How is that the end? Like after that smoocherific kiss everything is fine? Because that’s not how relationships work. But it is so often where eternity in romance, romantic comedy, and tragicomedy begins. (There’s a lot more going on in tragicomedy in regards to identity, but I suppose that’s a conversation for another time.)
So I wanted to do more of an odd couple bromance with open-ended romance and with friendship being the central focus. But I also wanted to show how Ari and Itche struggle, because relationships are hard. Even friendships can be really challenging. Because love is complicated. Because no two people are ever perfectly aligned in terms of needs, expectations, sensibilities. Connectedness over time takes work. And sometimes a lot more for those of us who are queer and/or sick and/or grew up in really troubling home or social environments.
Ari struggles with pretty much everyone in his life. Friends. Family. For example, his grandmother. He loves Bubbie Pearl to pieces, but their relationship isn’t easy. She doesn’t treat him in the way he wants to be treated. So often in a relationship you have to make a decision about how much of a certain kind of dynamic you can or will tolerate. There are all these negotiations and compromises. And sometimes dynamics can shift and you can continue to grow with someone, or sometimes you make a decision to tolerate uncomfortable or painful dynamics because you really want to keep this person in your life, and sometimes it’s just not manageable.
Alongside being a writer, you're also a visual artist. How do your various arts mesh?
I’ve always been intrigued by photography and wanted to be a photographer. But it seemed to me, for so many years, like something out of my reach, almost magical. Cameras looked very complex to me. They had a lot of doodads that require attention to detail that I thought was beyond my reach. And photography seemed to be something I had no right to. My mother’s a visual artist. A painter, sculptor, she made etchings when I was growing up. Inked them and ran them by hand (like steering a ship sharply to the left) through an old printing press. And she was a wonderful photographer. Because we had a really tough relationship growing up, for a while I stayed away from visual art. But not photography. I’ve always really loved looking at photographs.
When cameras became digitalized, I thought a lot about buying one—for quite a few years—but there always seemed to be other more urgent things, and I never felt comfortable spending money on a good camera. For fifteen or twenty years I only took photos with disposable cameras. In the early two thousands, my mother sent me a wonderful old point and shoot digital camera that she’d replaced. It wasn’t a super fancy camera, but it took amazing pictures. Really rich, with deeply saturated colors. I was so excited. A few weeks later, I dropped it and it broke. I was really upset about it. I thought, “I am not someone who should ever be trusted with things that break.”
And about ten years after that, two years into having full-blown CFS/ME, I got my first interchangeable lens camera. A Nikon. Wow was it amazing. I became kind of obsessed. I’d always spent a fair amount of time looking at photos and studying photography online, and thinking about it as a teacher (writing lesson plans revolving around analysis of photographs…) But once I got the Nikon I started “traveling by photo.” I did most of this on Flickr, checking out different urban photography, landscape photography, bird photography, macro photography…It was really fun, as I am mostly homebound and bedbound. And I began to develop more of an aesthetic for what I liked, which helped me think about shots I was taking.
So, between this, some mentoring from my friend Josh, and practicing in very confined spaces, I began to look at things more closely, with more thoughtfulness, which has been really enriching given that I only get to do away-from-the-house photo shoots maybe six times a year.
Having to do a lot of work to find subject matter and make images interesting has been a big influence on my photographs. I am always noticing angles and temperatures and patterns of light, naturally occurring or architecturally occurring patterns. Sunrises, sunsets. Flora and fauna. I got into macro photography (super close ups) because where I live there’s just a tiny front yard, and that and the inside of my apartment is the majority of my subject matter. So I just have to keep finding ways to look for stuff to photograph. Occasionally I get to go on outings. To the botanic gardens nearby. Stuff like that. And it’s so much fun. Really really wonderful. But it takes a fair amount of time to recover.
I also love comics and make some, and have a lot of fun with it, but it uses a lot of spoons and they are very amateur.
What compels you to write characters who have multiple marginalizations?
I love writing queer characters and Jewish characters. That has been my natural inclination since I started writing fiction as an adult. I’ve wanted to write other characters, but I struggle with the question of appropriateness in writing marginalized characters whose experiences are far afield from mine. I mean, these are complicated questions and issues around authorship and representation. On one hand, I think it is part of a fiction writer’s job to explore fictional lives and tell important stories and learn from the telling and through some entanglement of form and content, open new avenues of thought and consideration.
Lately I’ve really enjoyed writing sick characters. It is one of the many blessings illness has brought into my life. (To be clear, I don’t want anyone else ever to tell me chronic illness is a blessing, but I’ll say it sometimes…) I’m working on a middle grade fantasy with a main character who is homebound and mostly bedbound with CFS/ME. And in my middle grade fiction, which tends to be more fantastical, I feel more comfortable writing characters outside of my “experiential comfort zone”.
I think a lot about the horrifying lack of diversity of representation and authorship in mainstream publishing. That is why I started a publishing company Tiny Golem Press. If at some point I have the resources/support, I hope to publish a lot of work by and about sick and queer people and other marginalized/underrepresented voices. I mean, sure, we’re all unique. Every novel tells a unique story. But what happens when the overwhelming majority of writers and characters are white and cis and able-bodied, is that there is this kind of permissive subjectivity that allows these characters to be wholly fleshed out and complicated while everyone else is sort of made to become symbolic or a kind of caricature, or has to prove a point about “making it against the odds” or be a victim or be “the help”, doing emotional labor or physical labor…And that’s not okay. It’s important for people from all different walks of life, kids and adults, to see characters represented who are complex and vastly human, and who they can relate to on a number of levels. Not just one character from one book, but an array of characters, focal characters, from many books, many films…
You blog about your experience with CFS/ME. What was behind your decision to start the blog?
Oh boy. I was so angry. I couldn’t believe the shit people said and did all the time. Every day. It was a way for me to get some of my anger out and to share my experience. And I loved doing it, but the cost was tremendous. I wrote a lot of longer pieces with illustrations and though they aren’t great illustrations/comics, it took a lot of work and a lot of time to write and create this stuff. So, I haven’t done many posts lately.
In your essay "On Our Own and With Each Other", you write frankly about your journey to a diagnosis and a bit about what your life is like. Do you have any tips for people who want to write about their own disability/neurodivergence/
condition but don't know where to start?
I know it sounds obvious, but I think sometimes people forget how important their voices and experiences are. Write about what matters to you. What you’re angry about. What you’re grateful for. What you care about. What you long for. If you’re writing to friends or talking to friends about your experiences, go back to these conversations and use them as a starting point. Respond to things you’re reading or watching or to conversations you are having or over-hearing. Be in conversation with your own experiences and with your communities and with broader things happening.
Ask for help. Take notes/keep records of conversations and situations you think you might want to refer back to later (I think it’s a good idea in general, but certainly if your memory is impaired by injury or illness.)
Be yourself. But also, as Vivian Gornick says, it can be meaningful to write from a persona, and it can be an organizing force. I think that’s true in fiction and non-fiction. In her book The Situation and the Story, Gornick talks about how you have a situation you want to write about. And that’s great. But how are you going to write about it? That is, she says, what makes an essay meaningful. Exploring, with curiosity and a willingness to engage in a lot of self-reflection and analysis, why this situation is meaningful to you.
Have you ever experienced setbacks as a writer? How did you work through them?
I’m pretty sure my experience as a writer was almost all setbacks all the time until recently. Mostly because I struggle a lot with structure and just get really easily cognitively overloaded. When I was in college I struggled so much with reading and with writing papers I swore I would never go to school again. In my twenties I was in some writing groups with friends who were mainly poets, and that was really fun, but it didn’t help me move through a narrative—in some way bringing a piece of writing from one place to another.
Maybe around 2000 or so, when I was living in the Bay Area, I tried doing a fiction workshop and it was a total debacle. I didn’t know what I was doing. I didn’t have the social skills or cognitive skills or guidance from the facilitator to be the kind of participant he was looking for, and I wound up getting kicked out of the group. I was really ashamed and really hurt. When I moved to NY a few years later I did a short memoir writing workshop. It didn’t really help me with my narrative structure struggles, but it was a much better experience. The facilitator was clear about her expectations and everyone was really communicative and supportive, and the pieces were shorter, so I had an easier time reading them and giving feedback. And it got me thinking about my life sort of thematically, and it brought up a lot of interesting memories, and I had fun writing about them. I was the only queer person in the group (as I was in the other one), but everyone was really welcoming and appreciative of everyone else’s stories.
I applied to a few MFA programs in maybe 2006? In the hopes I might get help finishing things. But didn’t get in. In 2008 I planned to apply to many programs, but had such a hard time with the application process, I only finished one application, and cried the whole time I worked on it. And somehow I got in. And being in that program was amazing. And going to the ADD clinician, who, though she told me not to bother writing fiction, and told me some of my cognitive skills were at a second grade level, also gave me some tools for coping with and compensating for some of the profound executive functioning struggles I had. That has been invaluable. Because now I know when I’m struggling and can sort of describe the struggle to myself, which helps me strategize and/or reach out for the support I need to try to move forward or around obstacles.
Have you encountered ableism (or other prejudice) in the publishing industry?
Well, I’ve never been good at applying to things or sending things out. And that’s made it really hard for me to publish. I’ve struggled a lot with feeling unworthy. I guess part of it is perfectionism and extreme shyness and how easily I dive into “shame spirals” and then all the organizational challenges.
So, I already struggled a lot before I got full-blown CFS/ME. And then when that happened, people I had managed to be in contact with wanted nothing to do with me. My advisor from the MFA program, who had offered to help me work on my manuscript after my thesis defense, had already kind of flaked. But after I got sick, she never responded to me again. She had invited me to meet at a cafe and catch up, and when I told her I was sick and homebound, that was it. I wrote to her two or three times. Saying she was welcome to come have tea at my home. Then asking her for help with a query letter. Radio silence. Meanwhile, I was in a fair amount of touch with an agent who had come to meet with some people in the MFA program. She had considered picking up both of my novels (The Right Thing to Do at the Time as well as Book of Hats) and though she hadn’t picked up either, we continued to have a nice correspondence, and I thought it was possible we might work together in some way in the future. When I told her I was sick, she never responded to me again.
So, I don’t know. I’m not someone who is willing to hide things that are central to my experience and identity. Such as illness and queerness and cognitive and organizational challenges. It’s disappointing and frustrating the ways people often do or don’t respond when they hear I’m sick. And maybe I could be more savvy about these things. A lot of people said, basically, don’t tell anyone in publishing you are sick!
But I guess that’s not who I am.
I think struggling with chronic illness and cognitive challenges and relationships (and lots of other things) has been a really meaningful part of my life, and so it’s important to me to talk about it and write about it.
I am so lucky I met Sharon at Everything Goes Media https://www.
everythinggoesmedia.com, who is co-publishing and distributing TRT and BOH. She is wonderful and supportive and funny and deeply knowledgeable and clear about her expectations. I’ve learned a lot working with her.
And I am lucky to have connected with Laura Isaacman and Chelsey Clammer http://www.chelseyclammer.com, a writer and editor who is helping me work on essays. I’ve always struggled with writing essays as I have with everything else, and I think it’s just all the support and help and various learning adventures and processes that’s made it possible for me to do the work I’m doing now.
I don’t know what will happen with my books. I can’t promote them in the ways other people might. I’m homebound and really limited in terms of spoons. But I’m doing the best I can to reach out to people (something I’ve really struggled with in the past) and hoping with my books and the essays I’m working on about illness and queerness…. to find and engage with a growing community of readers and writers. And I’m hoping to keep publishing fiction and to be a resource for other writers.
What are you currently working on?
Lately I’ve been writing personal essay type pieces about various things, but in many ways focusing on illness, and it’s been really meaningful work to me. I’ve always been intrigued by essays, fascinated by the form. I’ve read a lot of essays (I particularly love science and nature essays, but have read widely.) But I’ve always struggled to write them myself. Early on in being homebound, I took a class with an old friend, Cooper Lee Bombardier. “Writing from the queer heart.” A wonderful course. I recommend it! I hoped it would help me with structure. My “final project” for the class was way too long, stylistically soggy and maybe a bit all over the map, and far from structurally coherent. But, I think over the last two or three years, the stuff I learned in the class and continued to study and be attentive to has gradually, I don’t know, seeped in? And helped me a lot. And working with Laura and Sharon and Chelsey, and having conversations with friends. I’m writing some essays that matter to me a lot and that I feel really good about. So, I’m hoping to keep doing this for a while. And then I’d like to get back to working on fiction. I’m hoping to publish “Amir and the Bird Girl” soon. A lot of middle grade stuff. And a novel of adult literary fiction I started just before I got sick.