What happened to you?: On what is lost and what is possible in exile

An Interview with Sheila Black

Sheila Black, a woman with dark hair and a black top smiles at the camera

Crippled they called us when I was young
later the word was disabled and then differently abled,
but those were all names given by outsiders,
none of whom could imagine
that the crooked body they spoke of,
the body, which made walking difficult
and running practically impossible,
except as a kind of dance, a sideways looping
like someone about to fall
headlong down and hug the earth, that body
they tried so hard to fix, straighten was simply mine[1]

In the poem, “What You Mourn,” Sheila Black twists the notion of disability as loss: the assumption that all disabled people were once nondisabled and watched their ability slip away. This assumption is found within questions often asked of disabled people such as: “What happened to you?” What happened to Black, what her speaker mourns, is not becoming disabled but losing the body she knew well at the hands of a doctor who straightened her legs. The speaker describes feeling exiled from her “crooked” and “sideways looping” body as a result of a world that decided she needed to be fixed. In the introduction to his iconic text on disability politics, Exile and Pride, Eli Clare demonstrates the overlaps of the real and metaphorical mountains in his life. He writes of an attempt to summit Mount Adams with a friend: “I climbed … for an hour and a half scared, not sure I’d ever be able to climb down.”[2] He felt a deep pressure that day to be the supercrip (the disabled person who overcomes their disability; in Clare’s case, his CP). He then thinks expansively about the experiences of those exiled because of their inability to summit social mountains, all those who cannot “scramble[] toward that phantom called normality. … We speak the wrong languages with the wrong accents, wear the wrong clothes, carry our bodies the wrong ways, ask the wrong questions, love the wrong people.”[3] In my interview with Black, she expresses frustration at the limited roles there were for her as a disabled person growing up: “when I was born, discourses around disability were fairly straightforward and brutal — there were basically two options, both bad — be non-compliant and completely outside; or be a heroic example and prove this by demonstrating grace and strength of character at every turn.”[4] Black writes and speaks about the impact of these rhetorics on her own body, the way they literally straightened her out. But Black also writes from a profound state of distrust of the institutions, from hospitals to governments, wielding such rhetorics: “this experience has informed what I write by introducing a persistent sense of exile and uncertainty into my work. I don’t know that I feel I know or trust my place in the world. I don’t know that I trust very much the institutions of the world.”[5] Both Black and Clare work to undo the binary of loss and the supercrip through their experiences of exile. They critique the structures of power that exiled them while working to form coalitions with others who have been thrown out of public spaces/out of their own bodies.

In Black’s poem, “The Red Shoes,” the speaker begins by describing a pair of red slippers found under floorboards. These red slippers conjure both the film The Red Shoes in which shoes lead a ballet dancer to her death and the fairytale of the same name where a mysterious soldier enchants a girl’s shoes to dance with her feet in them even after an executioner amputates those feet at her bequest: “you / said ‘The name of the film,’ and I said I thought it was a / story older by far of a girl who puts on the shoes and cannot get them off … until her feet fall off, and her hands / and they make her wooden ones.”[6] This multiscalar movement (from floorboards in a house to a 1940s film to an 1840s fairytale) carries into the speakers voice throughout the poem. The speaker links personal experiences of pain to what’s happening in her neighborhood more broadly: “one night / at the Embajada I broke a tooth, and the very next / night three teenagers were shot dead as they sat at / a booth by the window eating mofongo.”[7] The speaker forms these imagined connections across time and in a particular place through experiences of pain and exile.

Black turns to exile as a way to dream community and support; she creates linkages between those who do not fit into dominant expectations. In her work as a cofounder of Zoeglossia (a literary organization for disabled poets) alongside Jennifer Bartlett and Connie Voisine, Black works to create alternative spaces for disabled people. She emphasizes the benefits of a disability community: “You don’t have to be constantly performing or explaining your disability. That frees up a lot of space for creativity.”[8] Spaces such as Zoeglossia offer options other than a binary of exile or supercripdom; instead these spaces can foster support and the possibility of new forms of being beyond ableist rhetoric. While Black writes from her own experience of exile through disability, she pushes this experience out into a more expansive thinking about crafting a someplace else. Black thinks through the beauty in a space of exile, what can be made there, who can it be made with. She imagines, alongside Clare, a utopic crip future. Clare describes that future: “Someday after the revolution, disabled people will live ordinary lives, neither heroic nor tragic.”[9] Such futures, however, are uncertain in Black’s poetry; instead untrustworthy institutions are positioned as almost impossible to escape, even in exile. 

Reflecting on the impotence of the Mueller Report and the presence of children in cages on the US border, Black emphasizes how she “feel[s] the need to write and mount resistance to what [she sees] happening around [her].”[10] Her current work attempts to feel through the ways in which the persecution of disabled people is linked more broadly to the suppression of human rights. This interview, then, ends with uncertainty rather than utopia. What’s happening to you? What are you losing right now? With whom are you losing it alongside?

Sheila Black is the coeditor of Beauty is a Verb: the new poetry of disability and The Right way to be Crippled and Naked. Her poetry has appeared in numerous journals including Poetry, Ellipsis, and Poet Lore. She is a cofounder of Zoeglossia (a community for disabled writers).

Jessica Suzanne Stokes: How does your experience of disability impact how you write? In what ways does it inform and shape your methodology?  

Sheila Black: That’s a question! I wouldn’t be myself without my disability; everything I experienced — and this is still very vivid to me — in terms of my initial socialization was informed by my disability. I was aware very early that I was considered “abnormal,” and that I would be lucky or have to behave very well to have a chance at “having a normal life,” whatever this meant. In the early 1960s when I was born, discourses around disability were fairly straightforward and brutal — there were basically two options, both bad — be noncompliant and completely outside; or be a heroic example and prove this by demonstrating grace and strength of character at every turn. Both these options felt a little impossible to me. It makes me happy that the range of choices, postures, opportunities for living inside a disability have expanded, even though we still have a long way to go. I think this experience has informed what I write by introducing a persistent sense of exile and uncertainty into my work. I don’t know that I feel I know or trust my place in the world. I don’t know that I trust very much the institutions of the world. I think a part of my work is a struggle to adapt myself — this will sound corny, but here goes, I think I am working to trace what there is about the world to love. 

Stokes: In what ways do you think community is important for writers in general and particularly the Zoeglossia fellows?

Black: We all write to communicate with each other; some hardy souls end up writing mostly to themselves or to the imaginary reader — which at times can indeed be a great sustenance, but for most of us community is one of the joys of the writing life. I think it is often how we gain the persistence to write our way into the difficult topics, the large themes of our work. We need someone, some friend or engaged reader to say “Yes, I know what you mean,” or “Have you ever
considered … ?” The sharing and exchange around a love of the difficult medium of words is how we create best, I believe. I also think that community may be particularly valued among writers with disabilities. Many of us have grown into the world without necessarily being surrounded by people who were in our situation or could fully grasp our situation. The company of people who have experienced disability from within is affirming and liberating. You don’t have to be constantly performing or explaining your disability. That frees up a lot of space for creativity. Also, for many of us, there are significant barriers to the everyday participation in, say, a literary community that most able-bodied writers take for granted. As I find myself now entering late middle age with a disability that impedes my movement through the world, I become more aware that it is the small things that are often the most daunting, just the fact that everything is a little more difficult — from climbing a staircase to crossing a street without running over the light. These add up and I think part of the function of an organization like Zoeglossia is to create a space that implicitly recognizes that and provides support and breathing room.

Stokes: What communities, activist, writing, or otherwise, are you a part of? How does your involvement in these communities relate to your writing?

Black: You are asking me at a funny time in my life. I moved to Washington, DC, in part to help take care of my parents — my father has Parkinson’s — and so one community I’ve become part of, just recently, is the community of the aging and their caregivers, which has been an education, in, among other things, patience. I am also involved with Split This Rock — an irreplaceable organization, founded by the remarkable Sarah Browning, and now led by the incredible Rasha Abdulhadi, which “cultivates, teaches, and celebrates poetry that bears witness to injustice and provokes social change.” Kamisha Jones, their Festival Director, is a member of the disability community and such a gifted disability poet. These are all some of my communities. I also still consider myself part of the many amazing poetry communities in San Antonio — where I lived until recently — communities which are working — as are so many poets across all our communities — to stand up for values of love, respect, creativity, justice, tolerance, which are under such terrible and violent attack at this time in our history. For me, Zoeglossia is directly in line with all these communities; respect, justice, love, inclusion of people with disabilities have proved a real litmus test for the will and values of a community. I have been reading a lot about art in Nazi Germany lately — I was trying to write something about Enterarte Kunst, the famous Nazi exhibit of so-called “degenerate” art, and I was floored by how much the Nazi attempt to define their attack on art — and by extension social norms of civility and tolerance — originated in pseudo-medical abuse of the disabled as degenerate (Black’s emphasis). It is just stating the obvious to say so, but disability rights are human rights and I feel that the creation and continuation of Zoeglossia are a core part of that deeply intersectional struggle.

Stokes: Can you tell me about any other projects that you are currently working on? 

Black: I feel like one is supposed to give humble brag answers to questions like this, but I am not feeling that way. Maybe because Robert Mueller (our Neville Chamberlain?) testified yesterday[11]; something about that testimony made me so sad for what our country is, I am feeling a bit mired in doubt. I feel the need to write and mount resistance to what I see happening around me, but for right now, I am not sure what that resistance will require or how to perform it, so it has an impact. I am thinking about the fact that our government is holding children in cages on the US-Mexico border as I write this, and this morning on the radio I heard an interview with a fifteen-year-old Guatemalan boy being held there. He said there was not enough room in the cage for him and the others to lie down and sleep, so they were sleeping standing up. He said they were sharing the food they were being given with the younger children because there was not enough food and the younger ones are too young to understand why there is not enough food. He said, “It’s not fair.” I am thinking about what I could write that would make people feel in a way that might make doing nothing impossible. And I am afraid this is probably a pipe dream. I have a poetry manuscript that I am editing, and I was feeling okay about it, but I’m also concerned with “what is enough?” I’ve been working on some essays, which has been interesting, because it has forced me to do research and learn more than I knew about certain aspects of disability history. What this has shown me is how intimately persecution of people with disabilities is tied up with more broadly applied repression of human rights, which seems a landscape worth illuminating.

1. Sheila Black, What You Mourn Wordgathering (March 2007).

2. Eli Clare, Exile and Pride: disability, queerness, and liberation, (Durham, NC: Duke University Press, 2015), 9.

3. Clare, 1.

4. Sheila Black, personal correspondence (July 25, 2019).

5. Black, correspondence.

6. Sheila Black, The Red Shoes, Poetry (Chicago, IL: Poetry Foundation, March 2013).

7. Black, Shoes.

8. Black, correspondence.

9. Clare, 13.

10. Black, correspondence.

11. This interview took place on July 25, 2019. However, the refining of the article and its subsequent publication took place in crip time, mediated by hospital visits, illness, and other writing constraints.