If the soul and the ego were objects we could look at, the soul would be a translucent heart beating.
“I originally published this in 2007 thinking, Oh this is a fine book, but I will be joined by a whole lot of amputee writers, and they are going to be here any minute. I’m still waiting.”
Within twenty-four hours of meeting Jillian Weise for the first time, I was in a wig and dark round glasses, drinking extra-dry martinis in a dive bar, and answering to the name Zosia Zuckerberg (ZZ, for short). It felt like the most natural thing in the world. Spending time with Weise is not disparate from spending time with her work—entertaining and engaging, playing with form—and always a little unsure (but excited) about what comes next. I first encountered Weise’s writing through her novel The Colony (Soft Skull Press), where she confronts the often eluded conversations about disability and intimacy. Her protagonist is bold and electrifying, navigating the territory between societal acceptance and self-preservation.
These tensions are present in Weise’s most recent poetry collection, The Book of Goodbyes(BOA Editions), as well as her debut novel, The Amputee’s Guide to Sex, originally published by Soft Skull Press in 2007 and reissued this fall. “I dream the Mona Lisa into a wheelchair; she smirks behind glass with a victory stare,” Weise writes in the poem “Half-Portrait.” Her poetry complicates notions of “normalcy” and rescinds popular narratives of bodily shame. Her work engages with scholars, doctors, patients, writers, and of course, her readers—asking vital questions about where their values and ideals lie.
Jessie Male The reissue includes an introduction made up of short excerpts from journal entries. Why start there?
Jillian Weise I was excited when my editor, Yuka, wanted me to write an introduction, but I was resistant to any kind of introduction that explains the work or pontificates on the poetry. I started reading the journal entries from the year the book was first published and I liked the idea of splicing them with reflective endnotes. I was surprised by what the entries revealed about the lack of language on disability rights, pride, and culture. Now when I write in my journal I’m constantly thinking about those things. I was curious as to why those words weren’t coming up in 2007. What does that mean? Is it a signal that I personally have claimed disability in a larger way, ten years later? Or is it more acceptable to claim disability now? Or is there more community?
JM In the introduction, you write: “When we are making art, identity is so slippery.” So much of your work is autobiographical. Do you think poetry provides flexibility that memoir might not have?
JW I think that’s accurate. The work is definitely autobiographical, but whose work isn’t? Just because it is a book called The Amputee’s Guide to Sex, does it mean I am the amputee? Likewise in The Colony, the main character is an amputee but she is certainly distant from me in her provocation and audacity. I make that distinction because I feel, as a minority writer, more attention gets paid to the autobiographical than, say, a writer who is a nondisabled heterosexual white male.
JM Two of the characters that reappear in the poems are Holman and Nona. I was struck by the choice to give more of the backstory to these characters in the newest edition. Can you talk a little bit about that?
JW I felt more guarded in 2007 about the masks. Now, Janet Danahey, who is a version of Nona, remains in prison on a life sentence. She was twenty-three years old when she and some girlfriends decided to play a prank on her boyfriend. This was during the height of Johnny Knoxville’s fame and when the series Jackass was popular, so they played this prank, set some trash on fire at an apartment complex, and it was a windy night. The building went up in flames and four people died. My ex is a version of Holman, and we haven’t spoken in years. I guess I felt both tender towards them and willing to let the reader in on where the characters were coming from. Also I hope it is a level of permission for someone out there who is writing, that of course we take art from people we know and from relationships we’ve been in.
JM The poem, “Meeting Nona in a Dream,” begins:
It’s unclear whether we’re in a hospital or a prison,
Whether she visits me or
I visit her
The sections about Nona seem to be about the relationship between institutionalization and disability, particularly notions of power and social status.
JW [Janet Danahey] is one of my closest friends, and I write to her frequently though I have never met her. And the figure of Nona is separate from Janet, but Janet’s life sentence happened alongside my coming into poetics. I had this sense of misfortune and chance; someone could play a prank and cause people to die. She played this prank with her friends and they never spent any time in prison. I feel devastated by her position. But I also take your point. I’d hate to make prison a metaphor and say it is exactly the same [as disability] but they share the element of institutionalization and the ways that different bodies are received. I’ve been thinking a lot about the phrase, “I just want to be seen” because I hear that coming out of various communities. As a disabled woman, I don’t think we have a public place where disabled people can be seen as inclusive of their disability and their X, Y, Z other identities—their full, complex humanity.
JM What you’re saying reminds me of Rosemarie Garland-Thomson’s work on staring, how she describes the tension between the person doing the staring and the person being stared at. She writes: “Staring is a high stakes social interaction for everyone involved.” Is The Amputee’s Guide to Sex a way of staring back?
JW The title is sensational. I don’t even know if the title stares back, it just stares out. Staring back feels like receiving the gaze, and mitigating the gaze and doing something with it. It’s so reactive and responsive. I adore Garland-Thomson’s work, and I do think the gaze is a highly charged social interaction that I’ve negotiated in different ways at different points in my life. As far as negotiating my disability in the world, it took me awhile to realize I didn’t have to choose one mode and stick with it. It can flip-flop and change depending on the mood or the day.
JM The book is filled with references to other writers who have utilized disability in their work.
JW I really wanted company when writing the book. And I guess, when writing the preface, I wanted more company, because I kept reaching out to include friends. A struggle as a very young writer was feeling that I didn’t know who was the community of disabled writers. Nobody could really tell me. If they did tell me they referred me to Homer, and Milton, and Pope and Byron. All these masculine figures. So in writing the poems, I was looking for company, and looking for women with disabilities or at least women who had written into disability. That was really helpful. Now, I’m encouraged that the landscape for disabled and d/Deaf writers seems more expansive. There’s a network, and there is so much going on in the literary communities that include disabled and d/Deaf writers.
JM I was taken by “Ode to Agent Orange” because it seems to provide the reader with the “disability origin story”—something so many nondisabled people crave. Was the intention to provide an answer to the question of “Why”?
JW Why do so many nondisabled people adore the question of “What happened?” Why is that such a fundamental question?
JM I think this has to do with fear. If you provide the origin of the disability—Oh, I lost my leg in war or, a bus hit me—it gets framed as your experience, it isn’t going to happen to me. I’m safe.
JW So it’s a distancing mechanism then. To put the disabled person over here, the nondisabled person over there—something happened to you, but nothing happened to me.I’m still trying to figure out where I am on that question. My desire is to refuse to answer it. There are easy answers, but even at the level of easy answer, language is so pernicious. For the longest time the easy answer was birth defect, until I started thinking about the word defectand how I was reinscribing such a negative connotation in my two word biography. So now I say, “I was born with disabilities,” to just take away the bite of the word defect. I guess I don’t have an origin story, in so far as I was born. That’s what happened. Which is different than the accident or the war that leads to disability. I’m curious about disabled people who have an event and a day and time, a cognizance of a before and an after. I’m curious of their experience with disability, which differs drastically from mine.
In that poem, the speaker is speculating on what happened to cause this birth into the world with disabilities. My own father was in Vietnam, but I don’t have any archive that shows what I have is related to Agent Orange. I’ve seen “Agent Orange” come back as a nominal descriptor for our president. I do wonder about how flip we are about using names like Agent Orange for a president when so very many people were affected by it in their bodies. It’s not a metaphor, it’s not a simile—it is an actual chemical that caused havoc.
JM I’m curious about how the notion of the before and the after is applied to language. In the poem Training Wheels, one of the stanzas reads:
When I hopped to the bathroom
he shouted, Prettiest cripple I’ve ever
seen and I woke everyone up yelling
Am not am not am not!
The speaker does not seem to realize the negative connotation of being disabled until her grandfather calls her “the prettiest cripple” he’s ever seen. It’s as if this is the first time she fully understands societal views of her body.
JW Definitely. That poem comes from the frustration of constantly being named by others, and of never having the agency to name oneself. This speaker got fed up with the name “cripple,” which of course, generationally matches the grandfather’s lexicon. It’s no longer an acceptable name today for anyone. I think that’s where that poem comes from, a fierce antagonism towards being named, and not only being named, but through the name, being marginalized.
JM One of the poems I’m most taken by is “The Body in Pain” where you engage with Lucy Grealy, who died of a heroin overdose after years of trying to “fix” her face. You end the poem with the lines:
I am so angry with you. Which was it?
Did you abdicate to beauty or pain?
Say pain. It is easier for me to understand.
Ten years later, do you feel similarly?
JW Oh, I don’t think I’m as angry with Lucy as I was ten year ago. The anger is a method of self-preservation because Lucy Grealy is the role model for disabled writers and has been for years. But what does it mean when your role model either kills herself or develops an addiction that kills her? How do you reconcile that? I’m not angry at her—I’m angry that this is the imposition. It’s not a great place to be as a young disabled woman trying to write poetry. At the same time, more than ten years later, I’m tender towards her. I’m tender towards the way she had to negotiate pain, which I don’t have to do, at least not consistently, not chronically. I end that poem with, “Pain is easier for me to understand,” because that is a thing I can grasp, rather than a need to conform to culture’s standards of beauty.
JM The middle section, “Help your Physician Better Understand Your Pain,” is instrumental to confronting the medicalization of the body, and how dangerous notions of the cure are to disabled people.
JW We’re in a more eugenically dangerous moment today, as we wrestle with genetic interventions and places like Iceland are in the process of trying to eliminate people with Down syndrome from its nation. I’m blown away by the prevalence of the medical model that stretches into our lives in the form of Fitbits and wellness centers and health insurance. I was naïve. I originally published this in 2007 thinking, Oh this is a fine book, but I will be joined by a whole lot of amputee writers, and they are going to be here any minute. I’m still waiting. I do have some great amputee friends, but there are certainly more books by nondisabled writers fetishizing amputee characters, or amputee metaphors in poetry, than there are actual amputee writers, coming from that experience. Now, I’m more aware that it takes a lot of time. And we might have to go backwards before we go forwards. Which is also frightening.
JM As long as I’ve known you—and certainly prior—you’ve spoken about the ableism in academic and/or literary spaces. In fact, the first time I heard you address this was on your YouTube channel, where you put on a blonde wig and appear as a Tipsy Tullivan, a writer from Asswallascallacauga, Alabama. Can you talk a little bit about how this character emerged and evolved?
JW Tipsy Tullivan came about as a response to the Association of Writers and Writing Programs (AWP) rejection of all disability panels in 2016. Tipsy is nondisabled and from the south and has the best of intentions but is unfortunately an ableist at her core. In the moment of conflict with AWP I felt as if I had several options, none of them attractive. I didn’t want to teach AWP some lesson they should have learned in 1990 from the ADA law. I didn’t want to work with them; I’m not a great diplomat. The one thing I’m good at is speaking in persona, and voices, playing and improvising and feeling connected to art, and the mystical, all of which Tipsy Tullivan gave me access to. It’s also about what brings me pleasure. Two hours on the phone with AWP does not bring me any pleasure. Two minutes in a wig brings me immense pleasure. Tipsy has filmed at The New York Times and at a drive-through McDonald’s in Iowa City. I take cues from Fernando Pessoa’s use of the heteronym and from artists like Alex Bag. I’m just having a lot of fun. It goes back to, “I just want to be seen.” I feel like I can only be seen as one end of an extreme spectrum—amazing or pitiful or inspiring or so sad or so angry. Tipsy Tullivan gives me another way of being in the world. But I’m ready for the critique of it—you’re passing, you’re playing nondisabled, or we actually really need you to be yourself. I’m aware that it’s a complex performance.
jJessie Male is a PhD student in English, with a focus in Disability Studies, at The Ohio State University. She is a graduate of the MFA program in Nonfiction at Hunter College. Her personal essays have appeared in Guernica, Palaver, Bustle, Vol. 1 Brooklyn, Nerve, HuffPost, and other publications. She has appeared as Zosia Zuckerberg in the YouTube series, Tipsy Tullivan’s Tips for Writers.
If the soul and the ego were objects we could look at, the soul would be a translucent heart beating.