My Conversation with Writer, Professor and my Friend, Kate Schapira: Part 2

A.A.: How has writing emotionally affected you, both personally and professionally?

K.S.: Personally, writing does for me what I hope it will do for my students as well—all the things I said up there (different ones at different times). Right now one of the things I’m using writing for is to explore some ideas and approaches that kind of repel me but also fascinate me—so what’s that about? I think writing is one of the endeavors where I am least afraid.

Professionally is where some of the fear does come in—showing work to people, caring what they think of it, hating it and them and myself (just for a second) when they reject it, fearing that they’ll drive a stake through my ankles and leave me behind the Mobil station (I didn’t originate that, but don’t remember where it comes from—if anyone reads this and it’s your image, speak up!). But I also would like to believe that the investigations I engage in might be intriguing, thrilling or illuminating for other people to see (and I do like seeing other people’s), so I put them out there, in case. I almost never feel like throwing up anymore when this happens. I got a rejection letter just today, as a matter of fact, and it felt pretty bad. But when it’s an acceptance letter, it feels pretty good. (It would also be awesome if how I felt about myself wasn’t quite so vulnerable to how other people felt about my WORK, not even me per se, but that’s more of a long-term goal.)

The other thing is that writing and teaching writing are, at the moment, really the only things that I like doing AND do well enough to get recognized for and/or paid for. (At the moment, as far as writing itself is concerned, it’s “recognized for”; I haven’t been trying to make my living as a writer). Without them, I wouldn’t have a professional life! With them, I get to (for example) visit the class of high school seniors whose teacher is a friend of mine and talk with them about their poetry—and also about going to college. I get to read my work in front of people and watch them respond to it. I get to sit with a student and talk with her about how her work is changing and improving, and what she’s still struggling with, and what she wants to do next. Last year, I got to hear four classes of about 20 6-year-olds each talk about Lisa Jarnot’s “Cave Poem” and help them write about where they hide, why they hide, and how they feel when they hide. And I get to eat food, wear clothes, live in an apartment, and occasionally go to the movies or something.

A.A.: I read on the internet that you like to make chap books and leave them for people to find. Why is that?

K.S.: Wouldn’t you be happy, or at least tickled, if tucked into your library book you found a well-made, cool-looking little chapbook—even if you didn’t like poetry? That’s one reason. Another is that it increases the chance of the poems being seen by people who might not otherwise encounter them. If they don’t like them, no big deal—I’ll probably never know. The third reason is that if I make the book myself, I can make an end run, so to speak, around the acceptance/rejection setup (although I do participate in that as well, partly because the acceptance feels so good). And the fourth reason has do to with how good it feels, at least for me, to make things. I love making things—books especially—and then looking at, and sharing, the things I’ve made.

You asked me above how writing has emotionally affected me; back at ya. Since you blog, I’m also really interested in how writing regularly and telling your story on the internet feels to you; What do you value about it, particularly about its public aspect? What, if anything, frustrates you about it? What part do your online acquaintances with other people, including writers, play in the enjoyment and (if any) the frustration?

A.A.: I opened a Blogger account about two years ago and never really had anything I wanted to write. Then in November 2009, after several months of being sick, I became really overwhelmed. I was (and still am) experiencing Post-Viral Syndrome, which was complicated by pre-existing issues like my Dandy Walker Syndrome. I wasn’t working or in school, so I had a lot of time to think. I thought a lot about my life and all of the times I’d been sick or at least felt awful or had disability related difficulties. Having always found catharsis in writing, I knew that I had to get more of my feelings down. My private diary wasn’t enough. I wanted to become part of a community of other people who’ve dealt with a life of illness. I wanted my writing to be available to them. I also find I’m better able to explain my complex thoughts through writing, than through speaking – perhaps a product of my Auditory Processing Disorder, I don’t know. Anyway, like you do, I wrote to think. I wanted to figure out why I was so convinced I was imagining my experiences or at least exaggerating them.

I get frustrated with bloggers who have a pity-party every entry, who seem to be just trying to recruit sympathizers. I especially get angry with mothers of children who have illnesses or disability and release the identity of their children, post pictures of them after surgery and other things like that. As if the child has no right to privacy at all.

I don’t think I get frustrated with any of my blogger acquaintances because they work hard to see what I’m going through. Sometimes when they recommend actions I should take to feel better, I sense they don’t understand how difficult it is for me to ask for help, to deal with intimidating doctors. They do make it seem to think it’s all easier than it really is, but I know they’re only trying to help. I don’t resent them for it. Sometimes, not just in my blog, I’ll get comments about my heart like, “You should try meditation,” implying that to lower my heart rate, all I have to do is relax. In other words: I’m stressed. Assumptions like that really irritate me.

K.S.: What are some of the things that satisfy you in what you read—things you love to see? What are some things you would really love to write about, but haven’t yet?

A.A.: I adore memoirs, fictions, ah, I love to read lots of things, mainly those that are written in the first person. I love the idea of seeing the story through one character’s eyes and experiencing everything for the first time with that character. I love to read about the character’s insecurities and observations and see how the character grows throughout the book. I think you can only really get to know a character this well in a long book. I want to write a novel someday. I think creating a character, figuring out what makes that character tick, is like acting, something I used to really enjoy in high school.

K.S.: One of the blog entries you pointed me towards (“Lucky” on 11/14/09) feels very like a line in the sand in terms of thinking about your body and speaking publicly about it, and a lot of your blog entries focus on explaining your body to (often able-bodied) people. How has the way you talk and write about your body changed over the years? Was there a point when you feel you started to invent or adapt your own way of talking/writing about it, rather than accept (or in addition to accepting) others’ ways?

A.A.: Until about high school or university, I didn’t know I had Dandy Walker Syndrome. I had just assumed that my balance, co-ordination and fatigue issues were related to my shunt. Why would I think any differently? No one ever told me. I resent my mom, doctors, teachers and physical and occupational therapists for not making sure I knew why I was the way I was or why I was exempt from certain activities like walks to the local stadium, which were deemed too difficult or even dangerous for me. I don’t recall having much say about what I thought I could do or what I wanted to do. I feel like a lot of that was decided for me, based on medical evidence and testing that indicated I would likely have problems. A lot of it, of course, was based on my difficulties other people observed. I used to just tell people “I’m not supposed to do this,” but now I say, “I have a neurological condition that makes ____ difficult.” So I’ve become more comfortable admitting I have challenges or that I need help. I think this comfort stems from being educated about myself.

When I learned more about my issues and became comfortable talking about them in university, I started writing many of my assignments in my Health and Society and Professional Writing classes about my life and my thoughts about how sick people are treated and who gets to define "sick." I also started talking to friends, teachers and lots of other people about my health. It was a burst of freedom after hiding my feelings and thoughts for so many years. I admit that in university I started to feel sorry for myself. I craved sympathy.

K.S.: In my question about (not) being believed, I said “we” meaning “we humans,” but I think that’s a situation that often confronts women in particular (and perhaps even more particularly women of color and women living with disabilities). We’ve talked a bit about saying “we” (specifically in the context of “we women” and “we want”) and one of the things that you said that stood out for me had to do with unity—acknowledging shared experience and acting based on that experience. I’d like to hear some more of your thoughts on that—what do “we” need to know about each other before “we” can act? What happens when part of the “we” thinks one action is the best choice, and another wants to put something else first? (This is way, way generalized and if you need me to come up with an example I can; it also intersects with some thoughts about community that I may bring up later to ask for your thoughts.)

A.A.: Ah, “we” is something I have trouble with. I know I have become offended after other people with health issues I know on the internet have said things to me like, “People don’t know what we go through.” The trouble with “we” is that it assumes that you KNOW you have experienced something someone else has. And how DO you know this? There’s this sense that if people have the same symptoms as others, they know what those people are going through. I don’t think that’s fair because there are so many other factors besides illness. It’s wrong to compare one person’s suffering to another and I think that can happen with the use of “we.”

I have only used “we” when I’ve compared my experiences with doctors or other people to the experiences of others who’ve also endured such things. I think many doctors lack compassion and seem to be focused more on treating and curing then on caring. I know many people out there can relate to this. Sometimes other women in my perceived “we” seem to hate doctors who tend to assume they have anxiety. In this instance, I don’t want to be a part of that “we” because I understand that doctors probably DO see a lot of neurotic people, so it can be hard to differentiated between the neurotic and those who are really going through something. I HAVE had positive experiences with the medical field, I HAVE had diagnoses, so I don’t feel comfortable being lumped in with people who haven’t and resent doctors for not taking them seriously.

K.S.: One thing that shows up in “Case Fbdy.” is the cultural notion that women’s bodies are public property—that everyone (men, other women, women’s children, other children, even machines and inanimate objects) has the right to comment on them, touch them, condemn them, judge them, use them, examine them (according to their inclinations). I’ve heard stories from disabled people that suggest able-bodied people have similar attitudes toward disabled and/or differently abled bodies. As a woman living with some disabilities, have people approached you with this attitude, and what has your response been? Is that different from what you’d LIKE to say/do? (I notice that thus far you have been very polite to commenters on your blog who seem to think they know your business better than you do.)

A.A.: I don’t really feel this notion applies to me, perhaps because my issues are invisible. People have always seemed hesitant to ask me questions about my health or disability – almost nervously tip-toeing. This may be because I typically evade the topic and don’t often bring it up in conversation with my friends or whomever. I don’t make it easy for people to talk about it. Some people are actually afraid to touch my shunt, so I don’t invite people to touch it anymore. It grosses some people out – even my mother and sister who cringe when I rub my shunt if it feels irritated.

I have heard of this “right to comment, etc.” before, though. I’ve heard of adults who have dwarfism being pet like dogs or cuddled like babies. I’ve also heard of people talking ABOUT the person with the disability, to his parent or whatever, in front of the person with the disability. But no, I’ve never experienced anything like this I don’t think.

I’m trying to figure out what your comment “knowing your business better than you do” refers to.