Amber DiPietra works as a poet, a disability advocate, and a somatic writing teacher for folks in the disability community--not necessarily all in that order.
Please imagine the proceeding sections as non-linear, rounded confluences—my relationship to work/poetics as Venn diagram. For me, there is no longer any real separation between the various kinds of work I must do and my poetics. This is both a beneficial alignment and a chiasmus of energies. Fractal symmetries that sort of shove into each other while trying to surface.
Please click here to listen to an audio version of this contribution.
The short answer to “What do you do?” is, “disability advocate”. Though, often, it is easier to respond with, “disability service provider” because people can interpret that as case manager or social worker and that makes sense to them. The longer, more accurate answer, is that I work for the Independent Living Resource Center in San Francisco, where I am absolutely not a social worker (via the old model of managing someone else’s choices and determining abilities based on bureaucratic qualifiers). Independent living centers exist nationally in most major cities. They are government-mandated, largely government-funded nonprofits that serve as places where people with disabilities can go to get information about resources, such as assistive technology, support groups, accessible arts programs, alerts about proposed legislation impacting disability issues. ILCs are where people can get help with navigating social services like personal or in home care, low income housing options, employment accommodations, etc. My work also requires me to keep up with the politics around healthcare, genetic testing, civil rights and technological innovations.
It requires me to be a constant communicator—either via phone, in-person, or increasingly, via social networking—since one of the biggest issues facing people with disabilities is the divide that still exists in terms of social integration. But most of all, this work requires me to sit with people and envision outcomes. People come to me with a mass of reality and their language around it—a new diagnosis or years of living with nagging, stupid issues that crop up. Things like: “landlord won’t let me have a ramp and now three steps keep me prisoner in my apartment”, or “I need to take Goldie to class on my shoulder because she can talk to the voices while I take notes for my exam”, or “I go to job interviews and as soon as I walk in the door with my white cane, the interviewer sounds plastic”. Primarily, mine is a job of collaborative making. A kind of peer counseling poiesis. I listen, co-brainstorm, share stories about folks in similar situations. I take the language that is given to me and give it back to the person who has come to see me—either by offering a way to prioritize around the issue, reframing options, or simply emoting in a way that is authentic and carries new momentum.
As a “peer mentor” at my independent living center, it is hard to know how much or how little to do, how best to facilitate a space for the client’s envisioning process. Especially when we are stand together against such gaping holes in community support systems. There are appeals to file, requests to fill out, bureaucratic languages that must be worked within. Then I go home and I swirl these interactions around in my head for days at a time, trying to hit upon some creative suggestion I can offer in each individual situation. This “taking it home with me” is not really required as part of my paid work, but it is the part that makes me a poet within the context of the work. I have wanted to push that impulse further and I have wanted to combine my paid work as an independent living center worker with my work as one who writes poems. I have also wanted to bring in body-work, the hardest most basic work. I wanted to create a single space to function as a poet, a body-worker and a disability advocate, so I have been experimenting with Write To Connect. A creative writing class for folks in the disability community.
I ran out of cartilage over 25 years ago and all of my bones, including the vertebra in my neck, have been grinding to a halt since then. I am 32 years old. I have bone spurs, tendon impingements, and frozen joints. If I want to maintain any freedom of movement for the next, hopefully, several decades, I must work every day, slowly, tediously, to keep some modicum of space between my internal moving parts. This means undoing the time spent working by swimming, sitting in warm waters, lying down, making dull circles with ankles, shoulders, wrists, etc. It also means massage, acupuncture, and energy work. And Art workouts! (This embarrasses me, to go into all this, because I feel like I have said this stuff on the internets before. I am kind of phobic about being repetitive, because being repetitive in writing seems to mimic somatic constriction I experience all the time. However, it also tends to loosen gently, methodically, which is absolutely the point.)
All of this body-work requires a huge amount of money, time, and attention. I give far less of any of these resources to the body-work, than I give to other types of work. That’s because I get bored, because it is invisible, because it feels indulgent, because it leads me into claustrophobic self-narratives about the nature of how I do or do not move, because it seems simple and I haven’t figured out how to plug my somatic machinations into my writing in a way that is totally interesting and accurate. I think a sure bet is to find a way to offer the body-work to others. To have an energy work practice I offer out of my apartment, for instance. Currently, I’m confused about the apprenticeship process for that—and how I really feel about it as a fair exchange. If you know of an energy worker/poet who could help me legitimize this for myself, please send me an email. Most days, I want to be a practitioner of some unquantifiable transformations for and with others, more than I want to be a poet.
social- & domestic- work
Sicilian and Spanish immigrants by way of Cuba, people who are cigar rollers, nurses, hair dressers, musicians, waiters, bartenders, grounds keepers, actors, house painters, appliance repairers, and sales reps for cigarette vending machines, wine and beer—these are my family. Most of them with incredible genes that have them looking smooth, tan and athletic into their 70s. They’ve worked hard all their lives so I could stay home, in Florida, in their houses, and write poetry. If I had wanted, I could’ve done that. Or, my family cajoles, “You could rent a little place in the cool neighborhood where the gays and the arty people are redoing the old shotgun houses”. And be my very own Ybor City Thoreau—with family to do the laundry and cooking.
But, I chose “to haul ass outta Florida” as my grandfather Chino put it. And since I have asked so much of my family—it is a lot for them to have accepted, emotionally, culturally, me putting 3,000 miles between us—the least I can do is fly across the country a few times a year. I don’t make very much money working at a disability nonprofit (especially in a time when politicians want to cut funds that will allow people with disabilities the basic freedom of remaining in their own homes, outside of institutions). With the money I make, I save up to buy plane tickets home, to see my family. That’s always my goal. Not money for writers’ retreats or conferences or whatever. This is ironic for two reasons: 1) my family would buy my tickets and 2) I chose to spend an inordinate amount of money on academia which I then abandoned. That is to say, I used the excuse of “needing to go to grad school for creative writing” in order to move out to San Francisco.
The riddle for both are as follows: I felt like my family (many of them did not finish high school) would never let me leave Florida if I didn’t use grad school, an obscure and irrefutable idea, as an excuse. I also felt incapable of work, an MFA was an expensive way of stalling. Which actually feels like ultimate dumb assery to me, the grad school thing (but it is also the way I met magical friends). To me, work was physical labor, which I always saw my family doing. Watched them doing when I, a14 yaer old with locked shoulders, had a hard time even dressing myself. I got an MFA, but then decided being a creative writing professor had not enough to do with the peer mentoring work that needed doing, the kind of work I now do at the independent living center. Because by the time I had finished my MFA, I had also discovered the disability community. As for using the majority of my tiny savings for tickets home, that’s about emotional debt (how my family let go while remaining present to fall back on) and a sense of honoring their work, much of it blue collar, by trying to match it with my own.
I think of Chris Daniels, in his talk for Labor Day, saying “I see labor as an attribute of human behavior which transforms reality. You make a chair, you’ve transformed reality. You work as a clerk, you take a pile of paper here and move it there, you transform reality. You teach for a living, hopefully, you want to transform a human mind, you want to help someone transform reality and in your work you are — hopefully — transforming reality.” My little brothers are struggling, back in Florida, to figure out what kind of new experiences they want to have. They are doing badly in school because we don’t come from a studious culture. It is no longer clear to me what to tell them. My experience—a disability advocate/poet that left for SF—is a total anomaly. I want to do more work for them, help them transform their reality, but I am not sure where to begin. Especially if transforming means discarding cultural foundations.
poetry- & sleep- work
In her Lbaor Day talk, Sara Larsen describes the time she spends under the San Francisco Bay, rapid transiting toward capitalism. I think about how much better I would be doing health-wise if I had stayed a small arthritic Hispanic girl in Florida, Thoreau style, soaking in the Gulf of Mexico with my abuela to help me out. In SF, I spend more time commuting, under the sea, than rehabilitating in it. It will always be too fucking cold for me to swim here.
I fantasize all the time about being able to have sex, conversations, swim/ambulate and connect people in my sleep. This is why I write poetry. It is a little like being able to do that. I love what Andrew Joron said during his Labor Day Talk about being a surrealist, about dreaming while you are awake. It makes me understand how I could possibly join work and sleep. I need to sleep at least 10 hours most nights to keep my joints from totally stiffening up. Sleep fees like productive work; my friend Lexi Brayton says, “sleep is emotional research”.
There is a desire for the continuous, to be a single fluid element. For there to be no mess. (There wasn’t space to elaborate on domestic-work in this talk—the part of me that, as a disabled woman with a bit of the super crip syndrome, has a need to keep very clean floors. So that I know I can. Absurdly, with splintered ankles, four cats, and dwelling in close proximity to the Tenderloin. How DOES she do I do it, they ask? A boyfriend that sweeps and mops! Love as economical exchange—a whole other subject on the spectrum of work. I should add that he is also not insulted by my longing to converse and have sex while staying asleep. And that he has recorded this podcast.)
Poetry is messy. It is filtering bits of mica or raking the flats for a resonant tone. It is Sisyphus stuff, as work-work is often compared to. The labor it takes for things to elapse in time. I move in small circles, trying to find clearings and new energies. Work-work, freelance-work, body-work, poetry- and sleep- work align in the moments outside time, real time. Which is not trying, but dreaming. Awake, together with great fervor and to much use.