Photo courtesy of Sheila Black
Excerpts of guitar music composed and performed by Jorge F. Hernández, used courtesy of Mr. Hernández.
Sheila Black: "To be crippled means to have a window into the insanity of the able-bodied. To be crippled means to see the world slowly, and maniacally. To translate, to record, to adapt. To be crippled means to have access to people's fear of their own eroding."
Jo Reed: That was Sheila Black reading "Autobiography," a poem by Jennifer Bartlett, and this is Art Works, the weekly podcast produced by the National Endowment for the Arts. I'm Josephine Reed.
Sheila Black is an award-winning poet--she's the author of a novel in poems called Love/Iraq as well as the collection House of Bone. She's also co-editor with Jennifer Bartlett and Mike Northern of the recent anthology Beauty is a Verb: A New Poetry of Disability. Beauty is a Verb is a ground-breaking work combining disability poetry, essays on disability, and commentaries on the poetics of both. One reviewer wrote about Beauty is a Verb, "This powerful anthology succeeds at intimately showing...disability through the lens of poetry. What emerges from the book as a whole is a stunningly diverse array of conceptions of self and other." Given Sheila Black's brilliance as a poet and an editor, it can be difficult to remember she is also a prolific author of children's books with some 40 titles under her belt.
Sheila Black: I think I started out in publishing. And I sort of did it by accident. I love children's books, but I ended up a real work-for-hire writer. I wrote all kinds of things, some under pseudonyms, I was a real working writer, kind of like being a screenwriter, in some ways.
Jo Reed: And what drew you to poetry?
Sheila Black: I think I'd always loved poetry, and I came of age in the late '70s-- early '80s, and we were very unlike the generation now. I think we kind of wanted to explore life. We didn't necessarily know what we wanted to do. We were very much about getting the experience. I mean, I was like punk rock generation-- go out and experience for experience's sake. And I'd written poetry all that time very slowly. I think I'd work on one poem a year and kind of tinker around, but I'd always written poetry, and at a certain point, to be honest, I was just burned out being a commercial writer. I had wanted to be practical and somehow make a living writing, and in some senses, I hadn't really examined my own artistic soul at all except as something kind of off to the side. When I had my first child, something clicked, and I thought I want to write something that means something to me. And I'd always thought I wanted to be a novelist or a prose writer, but I am impatient. I think I tend to cut to the meaning very quickly. I think poetry's very philosophical in a way, and I'd never really had the patience to actually write a story or the gift for it-- to create that whole edifice.
Jo Reed: Well, I'm also looking at a book that you contributed to and you were also the editor of, and the title is, Beauty Is a Verb with the subtitle, The New Poetry of Disability. How did this project come together?
Sheila Black: It was a really wonderful, exciting project and interesting. All right, I have a genetic illness called X-linked hypophosphatemia, and if you see me, I'm short, and I have sort of fairly bowed legs. Until I was about 13, they were much more radically bowed, and I had major surgery at 13 where they basically reconstructed the leg-- both legs. I was in a cast for six months-- body cast. So I'd sort of had this experience, and X-linked hypophosphatemia is actually classed as a form of dwarfism, and it's a failure to absorb phosphorus. And two of my children have it, and, yet, I had never really almost come out as a person with a disability. It was sort of the kind of thing where I think there weren't that many models for how you navigated that in your life, and mine was basically, "Don't talk about it. Don't think about it. Just go ahead, and do what you're gunna do." Though, certainly, especially as a young child, that experience-- what-- the normal things you might experience like being teased. Well, I didn't really start to think about it systemically or politically until I had children, and I started to think, you know, I started to write about it very tentatively, and right in about 2010, I guess, I decided I would-- was curious about, were other poets really writing about this. So I wanted to do a panel at AWP, which is the Associated Writing Program, so I put out a call for people to join the panel. And I knew this guy, Mike, Mike Northen, who published one of the early journals of disability called Word Gathering and he had actually worked in Philadelphia and had been sort of the facilitator of the oldest writing group for people in wheelchair-- you know quadriplegics-- maybe in the country or one of them. So he wanted to be on the panel, and then I met this woman, Jennifer Bartlett, who's a wonderful poet. She has cerebral palsy. And then there were a few other people on the panel. And we were on the panel. It went well. We were starting to talk about what would be a poetics of disability, and someone said, "Is there a book of disability poetry you'd recommend reading?" And to be honest, the only ones we knew of were either very outdated or kind of hopelessly sentimental-- like, kind of Hallmark cards. And one of the things that we knew from our own experience-- Jennifer with cerebral palsy, me with X-linked hypophosphatemia, and Mike from his, he was the only one that had a formal training in disability studies, because we were really interested in a non-tragic view of disability, first of all, and also a view of disability that emphasized disability as kind of an engine for creative invention. We thought that was a really interesting question in poetics' terms. How does, for example, being vision-impaired or deaf change how you'd create and contribute to how you create a work of art? It seemed like an interesting question. We also had a lot of debates even between us. What is a disability? How do you draw the line between "normal" and "disabled"?
Jo Reed: Right. Like you made a decision-- people with AIDS-- even though it often manifests itself in physical disability, that that was not going to be included because it was an illness.
Sheila Black: We did make that decision, but we made it very reluctantly. We ended up limiting it to visible physical disability. We were really interested in the social construction of a person as having a disability meaning is the disability such an issue when you're not, when someone else isn't looking at you. I mean, certainly, in my life, I felt that was true. I don't really go around thinking, "Oh, my gosh. I have a disability. Woe is me," or "Oh, I have a disability." It's almost constructed when somebody notices it about me. In fact-- and that usually surprises me to tell you the truth, when I have an encounter where somebody-- I have them sometimes. I go to the gym. And the other day I was at the gym and someone came up and said, "I'm so proud of you for getting out of the house and doing something like this," and I was shocked. I had no idea, at first, what she was talking about. You know I thought, "Well,"-- the point is there's definitely a very big social construction. Well, it was a magical thing in a sense because we're at this conference. Someone asks us if there's a book, and we say no, and then afterwards we're having drinks in the lobby. A lot of good things sometimes happen over fancy cocktails at writers' conferences, and so we're having our fancy cocktail, and Jennifer says to me, "You know Sheila, we should write that book, and we should put that book together," and we got in touch with Mike because he'd been such a figure for bringing together disability writers and asked him. And, really, it happened with remarkable speed. I almost feel as if, you know I hate that phrase "this was meant to be" or "that was meant to happen" because I actually don't believe that kind of thing, but it came together with an almost uncanny swiftness.
Jo Reed: You know how sometimes-- not that it's meant to be, but things have its time--
Sheila Black: Exactly.
Jo Reed: -- and the right people just have to come together and it just manifests.
Sheila Black: I mean, honestly it came together -- we were working in a fever. We would all get up at five in the morning before going to our day jobs but we had so many fortuitous, strange things. Every time we were, "Who's our next person?", they would just magically appear. We asked every poet contributing to contribute poems and also, in most cases, to write an essay-- about their poet.
Jo Reed: Yeah, explain that. It was fascinating.
Sheila Black: Well, for one thing, I think that poetics is interesting. I think that poets love to talk about their process and their ideology and their systems, and that was one reason, but the other was I felt the need to really unpack and situate disability poetry for people. And I realized as I was going into the process that empathy, I think, is an extremely difficult thing. People think it's easy to imagine being someone else, but it's not, and a lot of time you lack concrete information about what it's like to be in someone else's shoes or function as they do. And so I felt that the essays gave people an insight into the world of the poet and the process of the poet that enriched the poems. We decided that very early on and, I mean, I have to say, I learned a lot in the process of doing this book. For example, John Lee Clark, a wonderful deaf poet and ESL translator gave an essay on translating ESL, and he talks about how the equivalent of rhyme in sign language is kind of repeated gesture-- gestures that mimic each other-- that echo each other, which is a wonderful insight. I also felt that the book, in some sense, was about poetry, but it was also about a larger social argument and how do we conceive of people with disabilities. And I felt that the art had to kind of crack open for people almost a new place in their imagination for placing disability.
Jo Reed: Well, I'd like you to read-- in fact, the first poem you ever wrote concerning your own disability.
Sheila Black: Okay, great.
Jo Reed: If you don't mind.
Sheila Black: I don't mind. Reading is fun. Okay, it's called, "What You Mourn," and this-- when I talked about tentatively beginning, this was the first poem that came out. "The year they straightened my legs the young doctor said, meaning to be kind, "Now, you will walk straight on your wedding day," but what he could not imagine is how even on my wedding day, I would arch back and wonder about that body I had before I was changed-- how I would have nested in it-- made it my home-- how I repeated his words when I wished to stir up my native anger-- feel like the exile I believed I was-- imprisoned in a foreign body like a person imprisoned in a foreign land forced to speak a strange tongue-- heavy in the mouth-- a mouth full of stones-- 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, and I loved it as you love your own country-- the familiar lay of the land, the unkempt trees, the smell of mowed grass down to the nameless flowers at your feet-- clover, asphodel, and the blue flies that buzz over them."
Jo Reed: It's a wonderful poem.
Sheila Black: Thank you so much.
Jo Reed: What precipitated the writing of this?
Sheila Black: I think it was that sense that-- I think it was just some casual conversation where sometimes I realized that most people looked on disability or mine in-- specifically, as this total misfortune-- you know like this being so uncool or so out of the loop or such a bad, bad thing, and I realized that I really didn't feel that way. I think that everyone has to, in some ways, love themselves. That's sort of the natural thing of being alive. I talked to my friend Jennifer a lot about this. She has cerebral palsy, and she says, "You know-- I was born with this, so, for me, it's just who I am, and I like who I am."
Jo Reed: It's like asking somebody, "What's it like being a twin?" Well damned if--what's it like not being-- I have no idea.
Sheila Black: Right, but I realized in the case of disability, there was just such a sense that this was a tragedy, and that if you were going to talk about it, you basically were supposed to be heroic, and say, "I've overcome it by doing something really remarkable or exceptional," or you were kind of basically either not talked about or out of the loop or pitied or feared even for being unfortunate. But also I had really experienced, and this is what really precipitated the writing, I had really had experienced and it had been one of the big experiences of my life, an awful sense when my legs were straightened, of having somehow sold out or abandoned the person I'd been before. I mean, that was a very real feeling for me because one thing that's odd about a lot of physical disabilities is you change over time, you're not left alone, you're corrected or your fixed or your this or your that, and most people assume that's just a straight ahead great trajectory. I won't even get into the whole medical experiment, whatever, you know, that it isn't always that straightforwardly an improvement. I mean, I was certainly of a generation where kids were operated on a lot. Jim Ferris, who is in the book, and it wasn't necessarily an improvement at all. You know, it was the best they knew how but they were thinking, "Oh, we'll do this, we'll try that, we'll do this." Never thought what would it be like to accept or live with that body or like that body, so I think I wrote that pretty much like I'm going to explain what this is like.
Jo Reed: It's so interesting because it really extends to other ways Americans deal with life.
Sheila Black: I think it does.
Jo Reed: This quest for perfection.
Sheila Black: I agree. I think the culture of evaluation which hinges around the idea of perfectibility or normal.
Jo Reed: That perfectibility is normal.
Sheila Black: That perfectibility is normal. The way I've started to think about it is it's basically, you know how when they talk about advertising, they say the way advertising works is it always give you a lack. Like something you lack that you need to fill this lack. I feel those two sort of feed into each other and it really is about, in some ways, conceiving of the body as a unit of production or that can always be better, more producing, more a kind of great machine and it's very untrue to the way most of our lives actually unfold because most of us will experience some form of loss of ability because of aging or accident but mostly aging, moving through time. And instead of finding ways to celebrate and embrace that or at least give it its due, we tend to deny, deny, deny it and I actually think a lot of the cruelty or suppression of people with disabilities historically has to do with that. How we relate to this perfectibility, it's certainly an issue for many women. It's an interesting intersection between feminism and disability, is that, you know, women are constantly the victims of this idea that we should look better.
Jo Reed: The book is divided into four sections and the section that your poems reside in is lyricism of the body, tell us about that?
Sheila Black: Yeah, well I think my section was sort of the more lyric narrative poets who kind of fell into almost betwixt and between. The crip poets are more actively sort of politicized around crip politics
Jo Reed: And what's crip politics and crip poetics?
Sheila Black: Crip poetics is, I think, the idea that it foregrounds to a certain extent the social construction of disability and it really looks at unpacking that and it really looks at developing a different ideology around which to kind of torque an understanding of body and embodiment. Jim Ferris who's in that section, describes it really well when he says we talk about symmetry and fitting in and this sort of hierarchy of belonging. He said what would it mean to torque our understanding of experience around asymmetry, you know. I think that's a good way to look at what the crip poets are trying to do and to a certain extent all of the ones in the section I'm in fall in to a certain extent, in crip poets, but they were often poets who don't write exclusively or centrally about their disability.
Jo Reed: As you?
Sheila Black: As me.
Jo Reed: Well let me ask you because you've written elsewhere as well that you've been concerned with the word normal your whole life, does that concern do you think inform your poems that don't reference disability, is that a thread that you follow?
Sheila Black: I think it is actually. I don't think of myself as an overtly political poet but when I look back at my work I think I sort of am. I think that most of the time my narratives are kind of concerned with, well put it this way, they're often concerned with, in a sense, with my experience as a diplomat's daughter. Like being in a privileged position vis-à-vis other cultures. That's actually a thread in a lot of my poems. You know, I think like many people, I have a lot of layers and one layer I have is that in addition to having the disability which put me at a lower position socially in some respects, I also was a diplomat's daughter, so I was traveling to countries where my family was privileged and I was aware of those boundaries. I think I'm worrying about confrontations of power a lot in my work. And it might not show terribly because I tend to subsume that into some sort of narrative I think that I'm really in my heart concerned with how power is or isn't shared in our world.
Jo Reed: Both with a disability but also with being a diplomat's daughter, there's a sense of being apart and there's the observant eye.
Sheila Black: Yes and I think so in that sense very much, I think that concern about what normal means and interpreting what normal means is tremendously important to me. I also find it very curious how hard it is for us not to fixate on some ideal of how we should be. To feel lacking.
Jo Reed: And it's interesting and I'm really seeing how disability poetics really is one way, another way to shine a light on this, to engage with this in another way, open doors.
Sheila Black: I think it is because if you think about it, disability really means people do have different capacities in their bodies, in their construction, and how are you going to cope with that. I've talked a lot to Jennifer and Mike about this lately and we tend to be a little hopeful. Like we think that if you really think about that, it goes back to things like, and I'm not religious at all, I should say that, valuing a notion of soul and community and being in a different way and I believe that. I believe we have to learn to do things like that. I also believe that one of the ways poetry is a great tool or art is, is that you can say those things, they sound sort of warm and fuzzy but they're not actually easy to do. They actually are done often through sort of intellect and rigor and that's an odd combination, you know what I mean? Like, that's what I meant about empathy, like we know that empathy is difficult. History teaches us that and in a sense we need tools to become more empathetic even when it's difficult and with disability, it's often difficult for people. You know, people don't wanna think about the fear of their own eroding is a part of it. They also don't wanna think about needing to take care of somebody else.
Jo Reed: And I think the book is much less about providing answers than asking posing questions.
Sheila Black: I do too, it's the first dip into the water. I wanted to be sure, we wanted to be sure, all three of us, to include as wide a range of voices and ways of incorporating disability into the work as possible. Then we have poets, and I fell into this, some who write mostly about disability, who write a little bit about it, and then writers who only show it through formal methods in their work, kind of more experimental poets who don't actually write about it but have formal ways of interrogating or expressing it which is kind of interesting. And I love that our cover is so celebratory looking.
Jo Reed: Your cover, please describe the cover. This is one of the best covers I've ever seen.
Sheila Black: It's a British artist, Susan Austin. She does this, she performed at the Olympics actually. She's in a wheelchair and this is called Portal 2008 and it, she does these performance pieces where she goes underwater in her wheelchair, she swims. So you see this woman, this gorgeous woman with her dark hair flying behind her wearing glasses in a pretty kind of sundress in her wheelchair at the bottom of a blue, blue pool and I felt like that celebratory radical kind of fierce cover was kind of the spirit I wanted the book to have. And this was the designer who found it and we had amazing contributors and one thing I feel good about is I think that we had a very big diversity of contributors. They don't all write the same, they don't all express the same view but I think we all felt good about coming together and that notion of judgment, evaluation, perfectibility, I think was one thing we were kind of united in trying to oppose through a celebration of experience itself in some ways.
Jo Reed: And I think the title gives that away too. Beauty is a verb, which is wonderful. Tell us where the title came from?
Sheila Black: Toni Morrison. Toni Morrison wrote an afterward to The Bluest Eye. I'd love to write her and say thank you Toni, which is a lovely novel as you know. And she said that.. you know, she was asked or she said she'd been asked where that novel came from and she said one thing she felt was that as long as beauty wasn't something you did but was something you were. Like, she wanted beauty to be something you did. There would be this kind of cruelty and kind of horror in the world for women, especially for people of color and anyone who was different and she said, you know, beauty should be something we do. And I thought about that and I thought, you know she's right. It's true, it shouldn't be this passive thing you just inhabit like a still life or, you know, it should be an active thing, so that's where the title came from.
Jo Reed: I'm going to ask you to read another poem.
Sheila Black: Oh sure. Great. Okay, I'm going to read Reconstruction and I'll just say as an intro, you can see that surgery I had was pretty significant to me. I think it's interesting to go through a process where you transform because literally I went from being very un-normal looking to most people around me. Like, extremely out on the fringe because you know, my legs were hooped like a circle, you know. I gained three inches or two and a half in the operation. So to being almost somebody who can "pass" which is another interesting disability question, that idea that many people pass, you know, and actually struggle a lot but it doesn't show, that kind of thing. So this poem is reconstruction. "I think of the trees there first, how large and tender they seemed, breathing green above the brick colonials. The loneliness of other people's windows, glittering under the sulfurous streetlamps. Past midnight when the pills stopped working and I could feel my bones knitting themselves into a new shape. The rings of trees accreted slowly one by one, spread ripples from a dropped stone. The healed bones hardening, a different white on the x-rays. Not even a ghost of the form they had been. The coating was blue shaped like a small bullet. My mother did not believe in such simple relief of pain. She had stayed awake even when we were born. Seen us slide out bloodied.. where had I gone wrong? All summer, they brought me trays of food, bowls of plums shimmering with water, cooked spinach, a limp sea of green. Said, eat, but I was weary. Remembered the myths I had learned. If you take a single seed, you will stay down here forever. I swallowed the pills vertically, felt myself plunge, a girl down a well, my own voice calling back at me from the curved walls. I was remade and I fell searching my old self in the trees above our house. Their age passing through me, their green hearts blooming in me. All I wanted was to remember everything. The way a child asks questions, to resurrect the moment of origin. The expression of a face before it is born."
Jo Reed: Thank you Sheila, I really appreciate it, you've given me so much of your time. Thank you.
Sheila Black: Oh it was really nice.
That was poet Sheila Black. She's the editor with Jennifer Bartlett and Mike Northern of the recent anthology Beauty is a Verb: A New Poetry of Disability. I spoke to Sheila Black while she was in Washington DC for the Split This Rock Poetry Festival.
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To find out how art works in communities across the country, keep checking the Art Works blog, or follow us @NEAARTS on Twitter. For the National Endowment for the Arts, I'm Josephine Reed. Thanks for listening.
Disability through the lens of poetry. [27:59]