Disability and poetry

6 april 2015
JENNIFER BARTLETT: I have resisted the term “identity poet” when considering my own work; therefore, my biggest challenge is to address my cerebral palsy without poetics and other identities taking a “back seat” in the process.

Ableism in the work of others doesn’t consciously affect how I write my poems. Poems for me are not a conscious endeavor. In the tradition of Jack Spicer, I just listen to the “Martians” and write down what they tell me.

The reaction among nondisabled poets to disability has informed my work primarily through the study of Larry Eigner. Because of his severe cerebral palsy, there has been a lot of unchecked speculation on his physicality, intelligence, and how his body affected his poetics. Further, his work has not generated the same popularity and “credit” his contemporaries have received. I do liken this to ableism, and part of my project is to be accurate about his situation through following his direct correspondence.

Larry Eigner has been a primary influence on my own poetics and life not exclusively because we share the experience of cerebral palsy, but rather through a kinship I feel to his methods of reading, corresponding, writing, and living. I could have just as easily written a biography on Vassar Miller, but she is a different kind of poet. Eigner was actually my second choice for a biography subject; my first choice was Muriel Rukeyser.

My feeling is that all “schools” of poetry and the agencies that go along with them have disregarded “disability poetics” as a category. However, this is changing, particularly with the support of the so-called Language poets, the work of New York’s Poetry Project, Craig Morgan Teicher, who reviewed Beauty Is a Verb for Publishers Weekly, and now this conversation. I would be interested to hear how your identities as disability activists inform your poetics. What poets have influenced you? What direct experiences have you had with ableism in the work of others or in publishing?

JOHN LEE CLARK: When I started writing, my problem was that 
I wasn’t conscious enough. As a second-generation DeafBlind man who grew up exposed to American Sign Language (ASL) storytelling and poetry, I should have gone straight to those treasuries and looted them for my English products. I didn’t. This was because I was also exposed to ableism and audism in English literature. English poets are especially fond of romanticizing and demonizing both deafness and blindness, equating these with silence and darkness – and death.

My gut response was to protest. If, for example, they waxed poetic about birdsong to emphasize how terrible it must be to be deaf, I would write about how our lives are full of music in motion and how beautiful ASL is. Later, while assembling Deaf American Poetry, I was surprised to read so many Deaf poets writing the same things, all the way back to James Nack. In his nifty 1827 poem “The Music of Beauty,” the Deaf speaker, luxuriating in the visual glories of nature and the charms of his blue-eyed maid, says, “I pity those who think they pity me.” He goes so far as to jeer at hearing people’s “marble eyes.” What a marvelous beginning to Deaf poetry!

Since then, though, protest has remained the primary mode. Perhaps it’s because Deaf people’s cultures and languages continue to be marginalized. Protest is a worthy, logical response, but it can also be limiting. Instead of the full range of our realities and imaginations, we get drawn into arguments we did not choose for ourselves. For example, “visual music” and “ASL is beautiful” are the two most common tropes in Deaf poetry, working to counter audist notions of deafness and muteness; meanwhile, in real life, Deaf people are busy cooking, videochatting, texting, dating, raising families, and making transactions, not all of them legal. I realized that I needed to write beyond these arguments, not to leave behind our causes or obscure my identity, but to claim more and more space in which we can just be.

JIM FERRIS: Disability is dangerous. We represent danger to the normate world, and rightly so. Disabled people live closer to the edge. We are more vulnerable, or perhaps it is that we show our human vulnerability without being able to hide it in the ways that nondisabled people can hide and deny the vulnerability that is an essential part of being human.

But there is something glorious in being considered so odd, so marginal to society. Disability brings with it a wonderful range of remarkable and powerful vantage points. It is so much easier to see when you can gain a little distance, a little perspective. Some of what we see is peculiar to disability, as suggested in Stephen Kuusisto’s “Harvest,” in which the speaker admires “the white moon of the morning, / even if my eyes tell me there are two moons.” But most of what we perceive isn’t peculiar to disability – it’s peculiar to human life. And that’s what we need to be writing.

We. I presume, I claim an “us,” even though there are myriad ways of embodying (and denying) disability, and no two disabled people’s experiences are the same. Disabled people are well schooled, whether impairment is acquired early or late, to identify with and aspire to be as much like nondisabled people as possible.

But if we don’t claim our difference, if we don’t write disability, the normies will keep doing it for us. It is crucial that we don’t keep leaving the field to them, even when we love them. Even when they tell us it’s for our own good.

I love John’s desire “to claim more and more space in which we can just be.” And Jennifer’s point that identities are always complex and variable is crucial. Who “we” are is always shifting. Is disability, or whiteness, or maleness most salient in this moment? Or poetness, vegetarian-ness, musician-ness, or on and on? I don’t demand that poetry or any other art form serve utilitarian goals, however laudable they might be. But I do want poetry, including my own, to open the world, to pay attention to what is, without getting stuck there.

I turn to poetry to help me to think, to feel, to perceive. I’m not sure if I could write long enough to list all the poets who have influenced me. But if I can give readers and listeners a little different way to perceive, to feel, to make sense of the things we only ever know partially, then perhaps I’m doing a little something worthwhile.

JILLIAN WEISE: I like John’s point: “We get drawn into arguments we did not choose for ourselves.” Sometimes I feel like I would rather talk about Kathy Acker. But what does the word “disability” mean? Is it useful to me? Can I get some heat from it? I am reminded of what Borges said to his nephew, “If you behave, I’ll give you permission to think of a bear.” Most often, I think about disability when I am asked to think about it. Then I feel an obligation to behave.

Yes, there is ableism. One able-bodied writer said to me, “Jillian, do you know why we use disabled speakers?” Do tell, Grandmaster. “Because all writers are outsiders and disabled speakers are the most outsider.” Noted. But I also hear this kind of thing: another writer 
once wrote to me, “I wish your book was not so dominated by 
disability poems.” And there’s the trap of ableism: disability is for able-bodied writers to write, because it’s easy for them, and they don’t have to think too hard about it, but disabled writers should stay out of it altogether.

And the metaphors. The moon is blind. The sky is deaf. My love is lame. Your death is a phantom limb. This is a complaint about bad poetry more than ableism. Can we agree that in 2014 disability stereotypes and cliched metaphors make bad poetry? As Rosemarie Garland-Thomson writes, “the always overdetermined metaphoric uses of disability efface and distort the lived experience of people with disabilities, evacuating the political significance of our lives.” Or is it too soon to come to this agreement? Will it take time? I hope one day editors reject these poems.


JLC: I agree with Jillian. Editors really need to start rejecting that kind of bad poetry. But I’m more concerned about what they do reject as “too niche,” “not a fit,” or simply “not poetic material.” Isn’t that funny? They are happy to publish poems with made-up disabled speakers, 
but these are mainly by poets who aren’t disabled, or, which is sometimes worse, by poets who are disabled but follow the “script.” You get a very good idea of what’s expected of you when editors ask you, “Why don’t you include something about how hard it is to be deaf?” or, “Why don’t you write about the things you miss seeing?” I get tired of explaining that it isn’t hard to be deaf or that I don’t regret becoming blind.

There’s something amiss – and missing – in publishing. Thirty million Americans are Deaf or hard of hearing. Add to that twenty-two million for the blind slice of the pie, and millions more for other groups – physical disabilities, different kinds of intelligences, and the rest – and what do we have? Nearly a quarter of the total population? Thanks to the capitalist interests driving the medical industries, that number is always growing, as more and more things are targeted as “abnormal” and in need of treatment. Disability is a major, major realm. But you wouldn’t know it from reading literary magazines or any of the “name” anthologies.

I recently asked an editor why he didn’t publish more disability writing. He countered by asking why there weren’t more disabled writers submitting their work. That’s a valid question. It’s true that we have fewer than our share of writers. Writing is a privilege. And many don’t submit aggressively for fear of rejection, which can be hard not to take as a reflection upon their identities. So, yes, it’s easy to imagine that there’s not a lot of our writing being sent out.

And yet there’s no mistaking it – there’s a bias. What is at the core of this bias? How can we get that changed to where our vast literature takes its rightful place – everywhere?

JF: Here’s something I’m wondering: how does that editor know which writers are disabled and which are nondisabled? Is it the Easter Seals stamps? No, wait – it’s the SASE back to the asylum, isn’t it? Darn it.

I don’t doubt that there is an unacknowledged bias around disability in Poetry World. There is such a bias around disability and disabled people in the world at large that it would be miraculous for editors and publishers to avoid it. And Poetry World, like the academy, is obsessed with “ability,” whatever that means, and so disability must be its opposite, right? But I’d be hard-pressed to point to specific examples of that bias in my experience – nothing so overt as the things Jillian was told. I expect this is because editors don’t often say why they reject poems. David Wagoner’s gentle, handwritten “Sorry to say no” is about all the rejection feedback I can recall. And I suspect that few of us are as enlightened as we might wish at recognizing, let alone owning up to, our own biases.

But there’s another impediment to recognizing and removing this bias: despite passage of the Americans with Disabilities Act almost twenty-five years ago, disabled people are not broadly recognized as a real minority group in the ways that we’ve come to recognize 
racial, ethnic, and sexual minorities. Disability is the one characteristic that cuts across all the other demographic lines, but that pervasiveness works against widespread group recognition. If there’s no group, what need could there be to consider bias against those people?

How to change that bias? My best answer is to write the poems that you want and need to read, and keep sending stuff out there. (I’m speaking to myself as much as anyone else here.) Because there are editors and publishers and most importantly readers who are open to our work, who want our work, whether they know it before they see it or not. One of my poems is in part about rejecting messages that disabled people get about changing or at least hiding their nonconforming bodies. I have been repeatedly surprised at how powerfully that poem speaks to others who have heard such messages, particularly breast cancer survivors. I had no idea. What a robust reminder that my job is to make these little paper airplanes as well and as beautifully as I can and then sail them out into the breeze. How far they fly, where they land, what happens after they land – this is none of my business, except as it helps me to make the next airplanes better. My work is to make them and sail them – and then make more.

JW: I feel like I could answer the publishing bias question supremely 
if I were already dead. Then all would become apparent: whose poems were ableist, which publishers were ableist, and whether the work endured or was forgotten. Then again, you probably would not care about po-biz if you were speaking to a ghost. Instead, very much alive, I am self-conscious. If I come out guns blazing, naming names, what will happen? Also, I’ve been lucky. My work has appeared in The Atlantic, The New York Times, and Tin House, so it feels strange to complain about a publishing bias.

May I talk about a different swindle? I was told there are speakers 
of poems and I believed it. When I invented disabled speakers I was told, “Those aren’t speakers. That’s you.” With minority writing, then, you don’t get the privilege of yourself. Self is constructed elsewhere. You are expected to be the speaker and represent the minority. Though, as Jim mentions, we’re not recognized as a minority yet. You are expected to be moral and teach. I think this is why Amiri Baraka wrote “Fuck poems / and they are useful.” Or what Laura Hershey meant by “Everything you say will prove something about / their god, or their economic system.”

I think there are certain kinds of disabled poems that some publishers want: the speaker overcomes disability; the speaker’s friend/relative is disabled or diagnosed; the speaker notices a disabled person on the side of the road. I avoid those poems at all costs.

JB: I think publishing in poetry is inherently biased; it always will be. In James Laughlin’s time it was impossible for an unknown poet to find themselves with New Directions. Laughlin either had to know the person or the work had to be “so good” he couldn’t help himself. Needless to say, the latter rarely happened. Editors have their friends and their aesthetic, and they publish accordingly. Like everyone else, poets are very interested in the idea of “sexy.” This is why anthologies on, say, conceptual poetry, become the focal point of debate, while anthologies like Beauty Is a Verb quietly seep into the culture.

As Jim stated, disabled people are not regarded as a minority. So, when anthologists, editors, and teachers work to include race, gender, and sexual differences, disability is left out. This happens often. But things are changing and I want to be sure to note that. I have had a few editors approach me for work for anthologies because they want a well-rounded collection, and they love my work. I’ve also had editors approach me as a “token.” It’s pretty easy to tell the difference. Even if editors approach me in the latter way, their methods may not be ideal, but at least they are trying and that is commendable.

Poets with disabilities probably do submit less. When VIDA did studies on women writers, this was also “the reason” given for not publishing an equal amount of women. Can this lack be real? Sure! Women are caregivers, homemakers, and also have jobs. Women with disabilities have to do all that and with impaired energy, movement, and agility. So, who is sending out more poems? You betcha! In response to this, women (and poets with disabilities) are told, “Do not have children or you can’t be a real artist.” I think the onus needs to be put on editors; if they want to strive for a balanced representation, they need to go make one. This is what Michael Northen, Sheila Black, and I did for Beauty Is a Verb. We looked for representation; we didn’t wait for it to come to us. We are editors: that is our job. A poet’s job should not be to make sure the publishing and editing world has equal representation; we have enough problems, believe me.

Editors also may fear the considerations of “disability poetry”; real truths about prejudices and studies on the difficulties of the corporeal. No one wants to read that! It’s too scary. What people want to read in terms of disability is the aspect of how awful and difficult it can be. This leads readers to develop empathy (or her naughty sister pity), which is something they can connect with.

I have a current manuscript that questions and pushes the issue of ableism in a direct way. I’ve had a really hard time getting it published. I often am slow to publish, but sometimes I wonder whether the manuscript has been in limbo for so long due to its content. I try to imagine an able-bodied publisher who will publish a book directly challenging ableism. I do not have an answer.

JF: Some years back I attended a panel that featured short readings from a number of poets published by Copper Canyon Press. It was in a good-sized room, with a table and chairs on a dais for the speakers. Lucia Perillo was one of the poets. Her multiple sclerosis had progressed such that she was using a wheelchair to get around. The platform had no ramp, so we watched her get lifted up onto the dais and then lowered from it when the reading was done. It was a good reading, but I had a difficult time getting past the absurdity: the raised platform, which was only accessible to an honored poet like Perillo through the physical labor of two or three strong backs, was there to make the featured speakers more visible to the presumedly normative sighted people making up the audience. So this thing that was inaccessible to Perillo was there to enhance access for others. It was an inadvertent spectacle, and Perillo was gracious about it, though 
I suspect she would rather not have drawn that particular attention. 
I doubt if I would have been quite so gracious about it.

The poet Stephen Kuusisto recently swore off inaccessible events, including conferences and poetry festivals. In his blog post about it, he said, “I’ve been to hundreds of gatherings that really don’t care if people with disabilities are at the table.” The basis of the problem, 
he notes, is that organizers, who may care deeply about diversity, don’t think about access for disabled people beforehand. Their limited idea of diversity “only extends to disability insofar as no one says: ‘don’t bother showing up.’” The problem continues because the nondisabled participants in the conferences and festivals don’t seem to notice or care.


Amen, Brother Steve.

Access can be a tricky thing, as Perillo-on-the-dais illustrates. But it’s all too easy for a society which has not even named, let alone addressed, its ableism to simply overlook the many ways that disabled people are excluded, all the microaggressions that don’t even sound like oppression to the nondisabled. It’s a challenge not to internalize this crap. I’ve had some success at getting my work out there and finding readers, so like Jillian I hesitate to protest too much. But chronic inaccessibility – the limiting of access that goes far beyond the physical – can wear at you like chronic pain.

JW: It is a challenge not to internalize ableism. I organize events in Clemson, South Carolina. One time we invited a public official to give an opening address. I don’t feel like I have the right to disclose his disability, but he could not step onto the platform. Students helped him and he made no mention of it, but it stays with me to this day. I failed him in that moment because of my assumptions. I was not thinking about accommodations. I bet many organizers cite that reason – “We were just not thinking about it” – in similar situations. We should start thinking about it.

The ADA tried to effect change in 1990. I’m not that optimistic 
about it. I was dismayed by the metaphor in Justice Kennedy’s decision for Board of Trustees of the University of Alabama vs. Garrett (2000):


Who are these “better angels of our nature”? Who is “us”?

Inaccessibility remains omnipresent. Libraries have stairs in front of them. Stairs are to libraries like moats are to castles. The handicapped entrance to the library at my graduate school was behind the building, next to a dumpster, with a button to push for the librarian. Back then, the librarian was on an upper level floor, so you stood out there and hoped she remembered you. Sometimes you had to push the button again and say, “I’m still here. Still waiting.” What does that do to you? There you are. Maybe it’s snowing on you or raining on you. Maybe the parking lot is empty and it’s midnight. Maybe you’re not sure what that man is doing over there, standing in the parking lot, staring at you. You’re waiting for the librarian to hurry and unlock the books.

JB: I have had a lot of good fortune in many of these areas. I have not been in a situation where a reading was not accessible to me. However, I have observed the difficulties of others. The 2012 Chicago AWP was particularly problematic for people who used wheelchairs. The hotel and events were some distance from each other and I remember that the buses the convention used were non-accessible. AWP hired one or two secondary buses that had to be scheduled and were unreliable. I specifically remember this delaying a colleague who was on a panel.

Working on readings for Beauty Is a Verb taught me how to think through the lens of universal design. I began to think about what a reading would look like if it were accessible to all people. Poetry readings tend to be inherently for a select group of people. The concept of the contemporary poetry reading is geared toward people with excellent hearing (in fact uber-hearing because many readings now occur in noisy cafes or bars), often in non-wheelchair accessible places. They are geared toward people who can sit silently, maintain concentration, and retain large amounts of information as text is rarely given out or projected. Poetry readings, of course, are also geared toward people with a strong presence and vocal cords: John Ashbery could be invited to read the phone book at Harvard; Larry Eigner isn’t going to get invited to read very much at all.

Stacy Szymaszek at The Poetry Project is a programmer who is a forerunner in inclusion. She has made St. Mark’s Church wheelchair accessible despite its ancient architecture, and we have discussed getting ASL interpreters. Every reading is recorded on video and audio, and these tapes (if not online) are accessible to the public. Szymaszek also has diversity in her programming; to my knowledge, The Poetry Project was the only location to host readings for both Beauty Is a Verb and Troubling the Line: Trans and Genderqueer Poetry and Poetics. The Poetry Project also has a running policy of including children: the New Year’s Day Marathon Reading looked like a Russian Orthodox church service.

I have found that my disability and connections to disability activism hold little, if any, weight in the arena of academic hiring and securing grants in the way that race, gender, and sexuality can make a poet stand out. Maybe this is good. Maybe not. This may be because my ideas of disability are controversial; I do not subscribe to the tragedy model in my writing at all, and I have seen those who do surpass me in grants, teaching, and publishing.

I do really, really wish there were grants exclusively for writers with disabilities. If we did have such a thing, there might be a larger variety of work.

JLC: Jim and Jillian, it’s interesting to sense a marked difference in your attitude toward accessibility and bias in publishing. Regarding publishing, Jim says that his “job” is to just write the best he can. Jillian mentions being “lucky” to have appeared in prestigious places and how it’d be “strange to complain.” On accessibility, though, you sound like you could rally! Is that because accessibility deals with the tangible and physical? Certainly the solutions are more present. But if, as Richard Lovelace puts it, “Stone walls do not a prison make, / Nor iron bars a cage,” then publishing is the more urgent theater for action. I say action because disabled poets have been writing for 
centuries. Something has to be done about getting our voices and histories encrypted into the collective DNA.

That being said, accessibility is vital, too. One thing few organizers 
realize is that they plan for and pay for access and accommodations all the time. The venues themselves, lights, restrooms, parking, program books, mics, air conditioning, tables, chairs, water, catering, and hundreds of other things are all accommodations. It’s society’s job to be helpful, but, ironically, those receiving the most assistance don’t notice it while we, the help-less, are the ones who “need” things.

Some have improved their checklists “for” us but then they say, “Why aren’t they coming? What are we doing wrong?” The problem is what I call “arm’s-length inclusion.” They would love to see disabled people attend or buy or register. That’s not true inclusion. Inclusion means having “them” be part of “us.” It means having us inside – as chairpersons and board members, as administrators and employees, as faculty members and featured writers, and, yes, as publishers and editors.

One more thing I want to mention: ASL interpreting is important, but because I am used to being in an all-signing environment, hearing settings, no matter how good the interpreting, are a downgrade for me. There are cultural differences, too. However, the events I’ve enjoyed the most, where most of the people there were hearing, have been disability events. The dynamic is different; you don’t feel the same suffocating “mainstream” vibe. The space is more open, the pace slower, the quality time richer. The nondisabled don’t know what they’re missing!


JW: To the question, “Does your disability affect how you write?” – 
I know it is not as simple as “I write in tercets because I have three legs” or “I write in hexameter to mimic hopping.” As for content, disability features in my work similar to how masculinity features in the work of men. I like how Jennifer mentions, in the beginning of this exchange, the “unchecked speculation” on the way Larry Eigner’s physicality affects his poetics. Critics are sometimes quick to speculate, “This feature in the poem is because of that disability.” Their speculation segregates the poet, the poem, and the critic.

When I became a cyborg, I felt liberated. My first book was out and I was being called “amputee poet” and “disabled poet” and I realized these names would apply for the rest of my life unless I changed the name. Simultaneous to this, my leg became a computer. So it was pretty clear that I was a cyborg. What’s it like being a cyborg? There are those who think I am “going through a phase” and “denying disability.” But the best part of being a cyborg is that I don’t care what people think of who I am or how I write or what I write. It’s permission to write any style, any genre. It’s not that exceptional. Anybody can choose a name. Some of my favorite writers have chosen several.

As for the art of poetry, I think of Bill Shannon a.k.a. Crutch Master. He says,


Or like Lil Wayne says, “What’s G?”

JB: I write poetry through my body. My body is the vehicle; therefore, my particular movement directs my writing. This expands beyond my body into what is happening in my life at any given time. In my early twenties I lived with a filmmaker in Boston and I worked at a museum. My lines were long and influenced by my constant engagement with film and visual art. My poems are influenced by time, and back then I had a lot of it. Later, I moved to New York. I “acquired” a husband, four animals, and a child. Shortly after my son Jeffrey was born, my lines changed. They became broken and fragmented, written in fits and starts. Time compressed and so did the line.

My father, the critic Lee Bartlett, once told me an amazing thing about my poems. He had been harping on me for years about my flawed punctuation. One day he told me, “You know, when you read these poems out loud, you actually read them like you have punctuated them on the page.” In this, he felt the punctuation was correct. While technically being incorrect, I wrote the poems as they were supposed to sound. This comment led me to think about how my body might directly relate to language and grammar. Or anyone’s body, for that matter. This isn’t specifically a disability thing – it’s a corporeal issue. I just happen to move like someone with mild cerebral palsy would move. If I moved like Balanchine, my poems would be different. Most poets know that Charles Olson was a huge person. My “mentor” is from Gloucester, and Olson was known as “the big guy.” That’s pretty apparent in his work. Like Olson, my poems move like me. My poems walk really, really slow. They are constantly distracted and want to look at everything. They want to stop and chat with every single neighbor and every single dog. They meander. They are not straight narratives. Is life a straight narrative? No, you have to pause and answer the phone. You have to go through the thrift store dumpster because the guys threw out some good books. You have to change a diaper or let the cat in (or out). As I said before, I don’t tell my poems to do anything; they tell me what to do. My poems are the boss of me.

JLC: A poet friend of mine likes to say, “You write what you read.” 
I don’t disagree, but I think it may be necessary for us to stop reading sometimes. Influences can be as much a trap as a springboard, especially if there are plenty of bad narratives “about” us out there.

As it happened, I never chose to stop reading poetry for a bit; the choice was made for me when I could no longer read print and switched to Braille. Very few poetry books are available in Braille. The e-book revolution should have changed that situation, but all of the popular e-book formats are by virtue inaccessible, locked. It took me a long time to repopulate my reading life with poetry. In the interval, I had a chance to think and explore.

While limited access to reading materials is an issue that needs to be fixed, Braille itself has given me many gifts. Physically handling words has made me a much better reader and, I hope, a better writer. My poems did change dramatically – from longish poems with regular stanzas to much shorter, compressed, stanza-less poems. But there was another current that eventually swept me into the opposite direction – opening up the pages, letting the lines break where they will in whatever media the poems find themselves in (print, online, Braille), playing with ASL gloss . . .

This radical development came about after I edited Deaf American Poetry and realized that I wanted my own community to be my audience. Before, I had in mind the “reading public.” No more. The great Gwendolyn Brooks gave me the key word I needed: “to.” She said that black poetry is written by, about, and to black people – not “for” them, because literature is for everyone. It’s a matter of address. I began to write poems we would share with each other around the kitchen table, speaking to each other in our own space.

And outsiders would still “get” some of it. They don’t have to know the whole history of this or that, or catch every pun or reference. Our poems will still communicate our world. I’d love to see more disability poetry written to us.

JF: I love John’s (and Gwendolyn Brooks’s) emphasis on audience in identity-rich poetry, not just by or about but also to. (Disabled people of all stripes have had plenty of for – “Here, let me help you with that,” whether you want help or not; “What he means to say is    . . .    ”) Writing to disabled people has all sorts of implications, not just topic and diction but orientation, the things you don’t explain but just let float out there. When I consciously undertook writing poems with a crip audience in mind, I let go of the myth of universality, or at least of a universality that I could consciously name and understand. That’s what I meant about my role being to make poems as well as I can and then let them go; I don’t get to control what people do with them, I don’t have much say in the “outcome.” Once poems are out in the world, they are out there, they are not mine anymore. With luck, they become ours. And this is one of the ways disability culture is made and conveyed, little bit by little bit.

I find myself thinking about the changes we’ve seen just in my lifetime. I used to be crippled, then I was handicapped. After that I was a person with a disability – a person, what do you know – and now sometimes I am a disabled person. The ADA is twenty-four years old, and there is still so much work to be done. But a generation ago Josephine Miles and Vassar Miller could not write more than a very little about their experience of what we’re now calling disability. Today, Poetry magazine. Tomorrow, who knows? We’re far from done, but we’ve come a long way.