Kate Schapira is the author of TOWN (Factory School, Heretical Texts, 2010) and several chapbooks with Flying Guillotine Press, Portable Press at Yo-Yo Labs, Cy Gist Press, Rope-A-Dope Press and horse less press, as well as her own kitchen-table imprint, In Hand Books. She runs the Publicly Complex reading series in Providence, RI. She has a B.A. from Bard College and an M.F.A. in poetry from Brown University
She works for Brown University and sometimes for the University of Rhode Island as an adjunct instructor. Kate has also taught and co-taught writing and art workshops in group homes for young kids and she has led writing workshops and a women's history class for incarcerated women (some in New York state, some in Rhode Island).
Kate is very kind, emotionally mature and curious about the experiences of illness and disability – characteristics I noticed very quickly through reading one of her chap books she sent me in the mail and also through her letters to me.
A.A.: I have your chap book about the experiences of illness and disability “Case Fbdy” in front of me. I remember you sent it to me after I commented on a post you wrote on Delirious Hem’s literature blog. What interests you about these experiences, which you told me you haven’t had yourself?
K.S.: Long answer alert! I’ll be honest and tell you that I had read and thought very little about disability as such when I wrote “Case Fbdy.” The found text was about aspirating or swallowing “foreign bodies”—especially straight pins used in sewing—and the main thing in my mind, I think, was that if you want someone to be oppressed, suppressed, weak or powerless, it’s a lot easier if you can get her to do it for you—to “swallow” it—and convince her that it’s natural to her, that it’s the best thing for her.
I write about things to figure out what I think about them and also to look for patterns and connections. I LOVE patterns and connections. Nothing thrills me more. I now realize that a lot of these ideas do intersect with disability and chronic illness and can see other themes that tie in with a lot of what I’ve read since about disability and its cultural presence—in particular, how sickness is often framed as disgusting to or difficult for the well person (doctor, husband, neighbor). I just don’t want to take credit for being more thoughtful than I was at the time.
Now that I have started thinking more about this and reading up (although I am still way back at the beginning), I think my interest in disability comes partly from the fact that as a currently able-bodied person, I don’t HAVE to think about it in terms of myself, and thus if I want things to be fairer for all humans (which I do) I have to take extra measures to think about it—my needs are NOT the only needs in the world. Also, of course, my able-bodied state (and privilege) may change at any second and will almost certainly change if I live to be old—the many people for whom “that time” is now deserve what all humans deserve (and only a few get). The idea of “deserving” is a separate and problematic one and I think I won’t get into it right now. Also, all humans get sick, all humans suffer, all humans die—but some humans like to behave as though this is not the case—and some humans are more penalized for it than others—and I want to acknowledge the presence of those forces in all of our lives, and also to deal with my own fears about them.
A.A.: One of my favourite passages in “Case Fbdy” is from “Two Days after Inspiration”:
She has to lie down, she’s a martyr
to headaches, she doesn’t thrive. Accident
makes bodies foreign. No year is given,
only duration, that is, external measure.
I identified with this completely. I think you really capture the sense of futility I feel knowing my disability/conditions are chronic and some permanent. My body does feel foreign. Mentally I feel young but physically I feel old. And the line on external measure... Wow! You hit it bang on. Doctors are the ones who decide how long you'll be sick or feel unwell, even though they don't know how you’re feeling. Oh, and "martyr" indeed. I refuse to give up and my body punishes me for trying. Symptoms get worse when I'm active, so try as I do, I can't seem to "thrive."
It’s like you’ve been sick all of your life. What inspired you to write this insightful piece? I definitely think patients – no, I don’t want to define people by their pathologies – I think people who deal with illness tend to resent their bodies and doctors, much in the same way you so creatively described. Under what circumstances do you think this resentment comes out?
K.S.: I was thinking about the way Western culture in particular pathologizes women’s bodies and regards them as “foreign” (for those of you watching at home, “Fbdy.” is apparently a short, medical-notational form of “foreign body”), strange, gross, sick and different, and how genuine sickness might arise from these attitudes and corresponding areas of ignorance. Because the piece of found text that inspired the project was from the 1800s, I was also thinking about things like swooning, the myth of the pioneer woman (infinitely tough yet infinitely nurturing, and always lauded in particular for her ability to endure pain), Little House on the Prairie, “hysteria”, the assumption that everyone else knows more than the speaker if the speaker is female, and the difficulty in being heard—those last two being things that, although not sick at the moment, I have undergone.
With regard to resentment, this actually intersects with one of my questions for you: One of the most horrifying things in the world is when we KNOW something is wrong—whether that thing is happening to us (from inside or outside our bodies) or to someone else—and people don’t believe us. You say in a blog entry (“Six Months” on 12/15/09) “…I want to feel and look really sick when I go into see him to open the gateway a little wider in case the bloodwork comes back normal. If the bloodwork comes back abnormal AND I feel and look sick, I won't feel guilty at all for complaining. I hate complaining when tests and examinations are normal because I feel like I look like a hypochondriac.” To me (listening from outside your experience) it sounds like your words (to doctors) don’t “count” (as proof), but your body does—they’ll believe that, they’ll trust that, it “counts”—they can “hear” your body better than your words, or at least you fear that that’s the case. Did I read that right, and if so, how does that connect with or affect the way you deal with doctors and the other people involved with your body and your health? How does that resentment come out for you?
A.A.: Yes, Kate. You heard that very right, but it doesn’t have much to do with my experiences with doctors which have been positive for the most part. And by “positive,” I mean that they have made diagnoses easily, without me having to fight for them or endure speeches that “It’s all in your head,” like so many patients, particularly those who’ve been healthy up until a point, have had to endure.
I tend to just imagine that I’ve been conditioned to feel symptoms that aren’t necessarily there, or conditioned myself to expect to feel ill or develop some new condition. I have no concept of what it is like to feel true health, a life devoid of difficulty or illness. It’s just something I’ve learned to expect.
Also, it feels SO surreal, knowing that I’ve had all of these problems in my life, most of which aren’t related to the others. It just seems like too great a coincidence. And I know that I only have mild versions of basically every condition I have, so I’m used to hearing from doctors, nurses and others that things could be a lot worse, that I’m “lucky.” So I’ve developed this “buck up/be grateful” mentality – like my health and disability issues aren’t worth my doctors’ time.
I feel even more obligated to “buck up/be grateful” when people note the invisibility of my issues. Just today, one of my classmates was asking me how I was doing and he said, “Well, you seem to be walking okay. You look good.” And it just makes me wonder how my suffering could possibly so invisible. Those comments also irritate me because I feel like others expect me to feel glad that at least I look good, or that others question the validity of my claims to illness and disability based on how I look and act. A few years ago, when I told a friend I had a learning disability, he said, “But you look smart.” There is this notion that suffering and difficulties are visible. There is also a notion that people with visible disabilities are suffering. I don’t think that’s fair either.
KS: In “Case Fbdy.” I think I was also imagining resentment and rage as itself a form of infection—pus, inflammation, fever are all signs that the body is fighting against something, right? So those things are uncomfortable and painful and can be gross, but they are also the body’s “speech,” its fury and anger. And of course sometimes what the body is fighting against is itself. I am uncertain about body-as-metaphor, illness-as-metaphor—is it appropriation? Is it creepy and/or unfair? What’s your take on that?
A.A: A: I actually didn’t find this metaphor in “Case Fbdy.” I think it’s an appropriate metaphor because it represents a basic perception of health: that illness, or at least symptoms, are a message from the body. It can be as simple as a pain in your hand you get when you touch a hot stove. Your body is telling you that’s dangerous. I think pus, inflammation, fever, etc. are obvious messages for you and your doctors to investigate. It’s like what I was saying before: these are visible, measurable experiences. Most importantly, for a patient, they aren’t subjective. So there is no room for a doctor to claim you’re fabricating illness, unless of course they suspect drugs or something else. Regardless, they know you require medical intervention. As a patient, this can be important, because it is proof of suffering. You conjured images of my mind of kids in the sandbox comparing their scabs. I remember a commercial that featured people comparing their scars from cancer surgeries. It can be liberating, to have proof of what you’ve endured, I think, to say “My scar is bigger than your scar.” Some may perceive their scars as war wounds. Well, now I’m getting into permanent evidence of illness, disability or suffering and that’s a whole other topic.
I think your metaphor can be dangerous, though, if it is turned into victimizing rhetoric: this person’s body is against her; she is helpless. Also, I’m sure it can be very traumatic to have visible, measurable symptoms because it provides people with opportunities to define people with disabilities by whatever makes their experience visible, such as: they are gross; they must be suffering; they must be weak. These, of course, can be unfair assumptions.
You’ve taught writing to kids in group homes and people who are incarcerated. What is it about writing that is so cathartic and educational?
K.S.: Probably each one of my students would give you a different answer! But I think that two of the things that writing can do are particularly applicable to distress and anger: the first is that it’s a way of getting what’s in HERE out THERE, from the head (or the gut, or wherever you may keep it) to the page, and once it’s there (even though it’s also still in your head) you can see it. It has a shape, and something that has shape can be shaped. You can shape it. If you’ve spent a lot of your life feeling or being more shaped than shaping, as it were, writing may not just feel good in itself, but also give you a taste of what it’s like to shape, to change, as well as to make something—to add something to the world that wasn’t there before. What you’ve written can also reveal to you what you don’t know, what you would like to know, what you can’t answer, what you want to think more about. In my own writing I like to go after those things rather than be like, “Okay, I’m done thinking about this now,” and I try to encourage students to do this as well, but if they feel they need the “done thinking about it” version, they usually go with that.
Writing’s second (and more obvious) power: you can show it/read it to other people, and they can see and hear what you think.
A.A.: What appeals to you about teaching writing?
K.S.: See above! I love helping people get to that point, where writing works for them—where they make it work for them, whatever it is that they need from it, whether that’s an investigation, a bridge, a septic tank, or something else that I haven’t even thought of. I love helping them figure out how to make their writing the most itself (whatever that is for them) but also showing them the range of what’s possible for them as writers. I know I’ve said this publicly before, but it’s such a great story that I’m about to tell it again: in my second year teaching college, a kid wrote in a response paper, “What’s great about poetry is that it doesn’t have to stop there.” He didn’t say where “there” was, and neither will I. I believe that it is really true, no matter where “there” is for each writer.
Teaching writing helps me figure out some of the things that I think about reading writing—both about individual projects and about words in general.
And also because of the enormous power that I believe words have, I like suggesting to students that they can and should use words with intention and care, because words affect how both the speaker and the listener think and feel.