WELCOME, I WANT TO KNOW YOU

An OS [re:con]versation with Ellen Samuels, author of HYPERMOBILITIES

[Editor’s note: Samuels’s verse memoir Hypermobilities is currently available for pre-order — order your copy here!]

Greetings comrade! Thank you for talking to us about your process today! Can you introduce yourself, in a way that you would choose?

I am a queer disabled poet, a white cis woman, a professor, a parent, a disability studies scholar, and a person living with Ehlers-Danlos Syndrome.

Why are you a “poet”/ “writer”/ “artist”?

For as long as I can remember, writing has been the thread along which my life was strung, the way I most naturally and deeply expressed myself and connected with the world. But there came a time when I was twenty years old, when my beloved and brilliant mother was dying quite horrifically from cancer and I was one of her main caregivers for those last months with no hospice or nursing support. At that point, for me, writing became about survival. It was and still is the one thing that I cannot live without and that shows me how to keep living even when faced with the unlivable.

When did you decide to use the language you use for yourself?

I wrote poetry since I was a child, but I don’t think I ever called myself a poet until I started my M.F.A. And then it wasn’t something I chose for myself exactly: you were either in the poetry or fiction program and I was in the poetry program so I was a “poet.” But then, after I graduated and published a small chapbook of poetry, I stopped writing poetry for a long time while I did my Ph.D. and became a disability studies scholar, got a job in that field, and wrote an academic monograph. I am very comfortable calling myself a scholar. To call myself a poet still feels a bit strange. But I suppose I am that now.

What’s a “poet” (or “writer” or “artist”) anyway?

Ideally, it’s a person who uses their art, their words, to draw meaningful and surprising connections between their inner selves and the world around them. And there are many different ways people do this. I admire spoken word poetry so much, and I think it does this tremendous work in the world that the poetry we see coming out of M.F.A programs and being published in literary journals doesn’t necessarily do. But much of that poetry is also doing really important work.

I do think that unless you don’t try to publish at all, or you only self-publish, you have to contend at some point with Poetry Inc., the poetry-industrial complex, and figure out what your relation will be to it — and if you have to have some kind of relation to it in order to call yourself a poet. I am thinking a lot right now about what my relationship to Poetry Inc. will be, and whether I can participate enough to connect with other people whose work is so transformative and valuable, but without getting caught up on the hamster wheel of prestige and competitiveness.

What do you see as your cultural and social role (in the literary / artistic / creative community and beyond)?

I write about disability. I’ve always written about disability, pretty much as soon as I myself really became disabled, which was actually during my M.F.A. program when I was in my early twenties. And I am very committed to and embedded in disability community, by which I mean a political community, a cultural community, not one primarily defined around a certain diagnosis or impairment. So that will always be who I write for, first and foremost.

I have worked quite hard, but I have also had a tremendous amount of privilege — racial, economic, educational privilege — that helped me succeed in my career as a disability scholar so that now I am a full professor at a major university. And that’s still true even though at this point I am quite ill and can rarely even leave my house or even get out of bed some days. So although I still feel like a relative novice in the current world of creative writing publishing after my long hiatus, I also acknowledge that a lot of doors are opened to me by the privilege and the position I have. While of course I want to get my work out there and promote it, I am also committed to using my privileged access to uplift other disabled writers, especially BIPOC writers, trans and nonbinary writers, and writers who are untenured or contingent or independent from the academy. Most disabled people in this country live in forced poverty and I don’t, so it feels very important to me to redirect resources to other disabled writers as often as I can. I see that as one of the most important things for me to do at this stage in my career.

Talk about the process or instinct to move these poems (or your work in general) as independent entities into a body of work. How and why did this happen? Have you had this intention for a while? What encouraged and/or confounded this (or a book, in general) coming together? Was it a struggle? Did you envision this collection as a collection or understand your process as writing or making specifically around a theme while the poems themselves were being written / the work was being made? How or how not?

At the beginning, as I talk about in the essay about writing this book, I didn’t think these were poems for publication at all. They were quite literally a survival practice, something I started doing in my head to sustain and distract me during MRIs, IVs, ER visits, and all the wretched bodily symptoms that were taking over my life: dizziness, pain, nausea, etc. I would compose them in my head and then later post them on social media to friends only, or scribble them on bits of paper. I don’t remember the point when I started putting them all into a word document. But at some point I did, and I started to accumulate quite a few of them, and one day I realized, I’m writing a book. And it really only works as a book, as a complete narrative, which is why I call it a verse memoir. I sent out some of the poems to journals and I had no success at all, none, getting them published. Some of the journals would say, send us something else, and I would send a more recognizable poem, a longer free verse poem, and that would get published. But the haiku, I realized, only worked as a complete book and eventually over many revisions, I ended up with six sections that each have seven poems. I had a lot more poems than that, maybe about two dozen more, but they didn’t all fit into the book for one reason or another.

What formal structures or other constrictive practices (if any) do you use in the creation of your work? Have certain teachers or instructive environments, or readings/writings/work of other creative people informed the way you work/write?

I have had some wonderful poetry teachers and companions over the years. To be honest, most of them were not at my M.F.A. program, which was at Cornell University, so it was a very rarified space and in the early 1990s, a space that was just starting to include queer writers or writers of color in any meaningful way. Many of my fellow students were just wonderful writers and I learned a lot from them, but the program itself was a fairly hostile place for me. The same was actually true for the creative writing program at Oberlin College where I was an undergraduate before Cornell: at the time it was really dominated by one person, and if you didn’t work with that person, you couldn’t be part of the program. So I, like a lot of other folks who didn’t quite fit, found other communities, queer and feminist communities, and held our own readings and workshops.

As far as formal practices, I never thought I would write a book of haiku. And I am quite aware that what I have written does not necessarily even fit the category as currently defined by many writers and critics of haiku, in this country at least: they have titles, they follow strict syllabic rules, they are less about simple moments of discovery or wonder and more about complex moments of embodiment, medicalization, survival, and loss. I very much did not plan to write haiku. But once I started, the syllabic structure became so crucial to me. It seemed almost impossible to say what I needed to say in so few syllables. Everything had to be compressed so tightly. But by forcing myself to stay inside that form, I gained back some of the sense of control that was slipping away from me at the time. And the poems took me to places I never expected to go either, like talking about my mother, or Narcissus, or the garden of Eden. I think form in poetry is incredibly generative when it allows you go to a place you didn’t know you were trying to find, rather than laying out a predetermined path you think you have to follow. That’s what this haiku form ended up doing for me.

Speaking of monikers, what does your title represent? How was it generated? Talk about the way you titled the book, and how your process of naming (individual pieces, sections, etc.) influences you and/or colors your work specifically.

The titles of the individual poems are really important because the poems themselves are so short and compressed, so the title is also doing a lot of the meaning-making of each poem. I chose for the most part titles from medical terminology, which tends to the impersonal, to act as a kind of foil to the very intense personal experiences explored in the poems themselves. The same is somewhat true of the section titles: “Symptoms and Signs” is taken straight from the language used for medical records or diagnostic criteria. “Coloring the Pain Book” describes the literal experience of what often happens in pain clinics where you, the patient, are given markers and an outline of a body and told to color all the places you hurt with colors that match the type of pain: numb, burning, stabbing, etc. I have colored dozens of those over the years. But also of course that title is doing some metaphorical work also: This book is a “Pain Book” as well, and we are coloring it together, me by writing the poems and you by reading them.

I wasn’t sure what to call the book for a long time: Hypermobilities seemed too obvious. But over time I realized it was the right title. Ehlers-Danlos Syndrome is a genetic condition that causes faulty collagen, so it affects pretty much all the body’s systems. But joint hypermobility is the hallmark sign of the condition and the most common type of EDS is Hypermobility type. I actually am not diagnosed with Hypermobility type, but with the less common Classical type. But the truth is, they really don’t know what type I have: As I talk about in the essay, I have features of Hypermobility, Classical, and Vascular types, but my genetic testing has ruled out Vascular and been inconclusive on Classical. I spend a lot of time explaining this to new doctors. I do have extremely hypermobile joints however, and like many of us with EDS, I used to think these were just oddities of my particular body until I was finally diagnosed at age thirty-five. Now I live with the fact that at any moment one of my joints could just slip out of place, causing injuries that usually would only happen in car accidents or intense contact sports. It happens if I turn my head the wrong way. It happens in my sleep. I hate it but also I have to find a way to love it because it is the body I have, the body I am. I can’t live hating myself all the time. And so in a way this book, Hypermobilities, is about moving between those worlds, slipping between them like a joint from its socket, looking at myself reflected in the words and trying to love what I see there even when it hurts the most.

What does this particular work represent to you as indicative of your method/creative practice? your history? of your mission/intentions/hopes/plans?

I think of poetry as like singing, and my poems sing themselves into existence through me. I don’t consciously design them, I don’t plan them out like I do a work of critical analysis. I never expected to write this book. I am working on three or four books now, and two of them I can plan out and make outlines for: one is a research monograph and one is a hybrid critical/creative nonfiction book. But the third one, a collection of personal essays, I have no idea when it will be done or what essays will end up in it because I am only learning about them as I write them, and some I have been writing for years and they’re still not done, they might never get done. It’s very hard in some ways to give up that control, and it also is difficult in academia where I’m always being asked to account for my work, to give publishing timelines and stick to them. But I am often just too sick to do the kind of research-intense writing that the monographs require and so I end up doing more creative writing because that’s more what my bodymind is able to manage. So I am also writing more poems these days than I expected and perhaps I will have another poetry collection in a year or two. I am trying very hard to just accept what comes and remember what is essential about my writing and what is not (external deadlines, publish-or-perish, etc.).

What does this book DO (as much as what it says or contains)?

I think on the most basic level, this book says to the reader “welcome to my world.” As in, see what it is like to live with my bodymind, my experience, but also as in, welcome, I want to know you, I want you to know me. It is about writing out of isolation in order to make connections at the very sites that are designed to separate us from each other: the boundaries of our bodies, the loneliness of the exam room, the impersonalization of medical languages.

What would be the best possible outcome for this book? What might it do in the world, and how will its presence as an object facilitate your creative role in your community and beyond? What are your hopes for this book, and for your practice?

I have this dream that some people with Ehlers-Danlos Syndrome will read this book and find that it speaks to their experience, that it makes them feel less alone. Although many more people are being diagnosed with EDS since the diagnostic criteria were revised in 2017, it’s still a very lonely disease to have. Most doctors aren’t trained about it. Most people haven’t heard of it. So if my poems help temper that isolation for some people, that would make me so glad. Also of course I hope these poems speak to many other people without EDS — both those with other chronic illnesses or disabilities, and those without. I hope to give readings, both in person and virtual, in poetry contexts but also in disability and medical contexts, always just seeking to get my words out to as many people as possible in hopes that for some people, they will make a difference.

What does it mean to make books in this time, and what are your thoughts around shifting into digital books/objects and digital access in general?

I love print books and it was very important to me for Hypermobilities to be published as a physical book. I love buying people’s books, reading them, having them on my shelf where I can find them again. I have a lot of trouble reading long works on screens, both physically and cognitively. But it is also so important to have books available digitally, for access to people with disabilities that make reading physical print difficult or impossible, and for economic and geographic access. I don’t want us to shift to an all-digital publishing world, but I think a hybrid approach is absolutely crucial for all kinds of access moving forward.

Let’s talk a little bit about the role of poetics and creative community in social and political activism, so present in our daily lives as we face the often sobering, sometimes dangerous realities of the Capitalocene. The publication of these volumes now falls during an ongoing global pandemic, intersecting with the largest collective uprising in US history, with Black Lives Matter, dismantling white supremacy, and abolition at the fore. How does your process, practice, or work reflect these conditions?

Well, I talked about this a bit earlier, in terms of using my privilege to uplift and support multiply marginalized sick and disabled writers, especially disabled and neurodivergent BIPOC writers. Do I think my book engages directly with some of these crucial struggles? Certainly not as much as my scholarship, which is very directly engaged in anti-racist, radical crip worldmaking. It is a book written from deep inside my own body, and its very conditions of creation meant I was at home or in the hospital instead of out in the streets where I would have been when I was younger and healthier. But I have found that writing the raw truth of my disabled experience, as honestly and also humbly as I can, can sometimes be useful to others with whom I claim solidarity and so I hope this book can be useful as well.

I’d be curious to hear some of your thoughts on the challenges we face in speaking and publishing across lines of race, age, ability, class, privilege, social/cultural background, gender, sexuality (and other identifiers) within the community as well as creating and maintaining safe spaces, vs. the dangers of remaining and producing in isolated “silos” and/or disciplinary and/or institutional bounds?

I think it’s all about the difference between speaking “with,” rather than “for” or “as.” We have to be able to speak and write with each other, across our differences, as Audre Lorde wrote about so powerfully back in the 1970s and 1980s. But we must be very careful about who we claim to speak “for,” and I think it is even more complicated to try to speak “as” someone else whose positionality we do not share. I don’t write fiction — everything I write is like me, me, my friends, my dog, what I had for dinner — so I don’t have good insight into how to ethically write fictional characters across difference, though certainly as a literary scholar I could point to some people who I think do so very brilliantly, like Toni Morrison for example, and many who do so quite problematically, who I won’t bother to name.

I do in my scholarship write about people who are quite different from me — I am writing right now about two pairs of sisters, Millie and Christine McKoy and Yvonne and Yvette McCarther, who were African American conjoined twins from the 19th and mid-20th centuries — and I try very hard to be clear I am not claiming I can speak for them or that our experiences are at all the same. But I do believe that I can and even must speak and act in solidarity with them, as a disabled person, as a person with a condition shared by many “freak show” performers of the past, and as a white person in this country who, like all of us, bears a responsibility for reckoning with history and for imagining and working toward new futures.

ELLEN SAMUELS is a disability writer and scholar and Associate Professor of Gender & Women’s Studies and English at the University of Wisconsin at Madison. Her books include Fantasies of Identification: Disability, Gender, Race (NYU Press, 2014) and a forthcoming poetry collection Hypermobilities (The Operating System, 2021). Her critical and creative writing appears in dozens of journals and anthologies, including Signs, GLQ, South Atlantic Quarterly, Disability Studies Quarterly, Disability Visibility, Brevity, Copper Nickel, Mid-American Review, and Journal of the American Medical Association. She has received the Catherine Stimpson Prize for Outstanding Feminist Scholarship and two Lambda Literary Awards. She lives in Madison, WI with her partner, son, and dog.