2006 - Vol. 3, Issue 7

KARI: What work do you do for Breath & Shadow?

LINDA: Unofficially, I do some copyediting, but more officially, I do proofreading. When I first started working for Breath & Shadow, I did much more copyediting. Often, I copyedited Sharon's humor column, and then I told Sharon that I wanted to be more of a proofreader. She sends me things that she thinks just need to be checked for punctuation, that sort of thing. But then, I'll encounter sentences that I think need some clarification, so I'll end up doing some copyediting, too.

KARI: How did you get involved in Breath & Shadow?

LINDA: I've been close with Sharon for many years. She and I worked together — maybe a dozen years ago — when I was the editor of a newsletter called Disability Issues. It came out of an organization called The Information Center for Individuals with Disabilities, in Boston. Sharon was working there. She might have started as an intern. Eventually, she was officially on staff, and she ended up being my assistant editor. So we started working together way back then, and after that, continued on helping each other with our writing. When Breath & Shadow started it was just natural that I continued to support Sharon and her writing.

KARI: So how would you describe your own writing interests? Are they pretty focused on disability, or is there a range of things that you write about  .  .  .  or read? I should imagine as an editor, you do a lot of reading!

LINDA: I love to read all kinds of things, but as far as work and writing.  .  .  .  First of all I'll say that I did a lot of writing when I was the editor of Disability Issues. I wrote a lot of the articles; I wasn't just the editor. So I was mostly writing about disability. But I was also writing about environmental issues and doing art reviews, so there was a considerable range.

I find writing very difficult. A lot of times it feels like torture to me: "I don't want to be a writer anymore!" I think one of the reasons writing is hard for me is that I self edit a lot; I'm naturally an editor. That's where my inclination goes and so I've been interested in putting my energy there. I'm very detail–oriented so proofreading also really suits my nature.

I also have, over the years, compiled a collection of stories by young people with disabilities; I put it all together, and put it on a website. It's called Listen to Our Stories: Words, Pictures and Songs by Young People with Disabilities. I had initially envisioned it as a book, and I attempted for years to find a publisher. I became incredibly discouraged and was ready to give up until I thought, well, maybe I could put it on the web. That was a whole, new challenge in itself. I worked with a wonderful web designer who happens to be a close friend of Sharon's. The web address is http://www.listentoourstories.com.

As the title indicates, there is writing, but there are also pictures — drawings and paintings — and a few songs, all by kids ranging in age from five to twenty–one, mostly in the United States, but there are a few from other parts of the world.

KARI: Do you think that there is a lot more outlet and potential for people with disabilities through use of the internet?

LINDA: I guess so; I mean, I've heard that for years and years and years! But the thing that's ironic for me is that as much as I enjoy that work, it's actually physically difficult for me to be on the computer, which includes being on the web, of course, and so actually I sort of avoid it! I love creating these means of communication, and I think the web is a wonderful resource, and yet I do my best to not avail myself of the resource because it's hard on me physically. But yes, in general, if people are limited in terms of going out and connecting with others because if their disabilities, I think it's very useful.

KARI: What other work do you do?

LINDA: Currently, I do editing and writing in three part time jobs. Two of them are actually community–activist type positions. One is specifically pertaining to disability; one is indirectly pertaining to disability, and it's actually about the environment. It directly affects people with MCS [multiple chemical sensitivities] as well as other environmental concerns.

Here and there I'll get a proofreading job from a colleague of mine. I work with such interesting people, who work with such interesting organizations  .  .  .  almost everything that I work on is really interesting! I find Breath & Shadow pieces fascinating to proofread, because it just gives me a special insight into the work that's going to end up in Breath & Shadow. I always learn something from those pieces. When I say learn, I don't necessarily mean new information, [but becoming] acquainted with another world.

KARI: If you had to pick a favorite thing that you do, what would it be?

LINDA: It varies. Some weeks I feel just thrilled about one thing, and then I get really discouraged and think, "I'm glad I'm working on this other thing that I love." In general it tends to be when I'm most engaged with other people; even though I work alone almost all the time, I like it when I can be even indirectly engaged with others. What excites me the most is creating something beautiful.

For instance, one of the organizations that I work with is called Neighborhood Pesticide Action Committee (NPAC.) Our efforts are directed at stopping the use of pesticides in our neighborhood of Boston, and we've now expanded our sights to all of Boston, actually, working with the Boston Public Health Commission. I ended up being the person who worked really hard on getting our website up and running. I worked really closely with the designer and said, "Could you change this, fix that, make it more beautiful this way and that way?"

Every year in Jamaica Plain, where I live, there is an annual festival in the spring called "Wake Up the Earth." NPAC was present at the festival, and I organized members of the community to be involved. I enjoy that, being in touch with people who are excited about the same celebration that I'm excited about. And it's a finite job that has a beginning, middle, and end, as opposed to some of the battles we fight, which seem to be ongoing.

KARI: I know you mentioned that you find it difficult to write. Do you also find it difficult to do disability–related work, or work in the disability community? I know that as a person doing writing and disability–community work myself, I've encountered a lot of difficulty and a lot of people who feel the same way!

LINDA: [The community activism challenge] is just such a different kind of challenge from the writing challenge. Writing is much more of a private thing, where I'm such a perfectionist and I can't find the [right] third word in the sentence! (LAUGHTER)

With the community activism, there are several things. One is, it's not really second nature to me to do that kind of work — or first nature to be outgoing and reach out to people. That's one reason why I took pleasure in working on the website; it's public, but it's private. I'm just working with a few people, reaching out to a lot of people through words and visual [images].

It's also a challenge in terms of having disabilities. I do almost everything by telephone, which puts a great limit on what I can do, and it makes me invisible in a ways. That is painful. My main colleague and I are the two main people involved in NPAC; there are hundreds of people who are involved in other kinds of ways, but she and I are directing the organization. A lot of times she is the one whom people think of as "the person" at NPAC, because no one sees me!

Also, about understanding or not understanding disability: I think there is a lot of good will. I live in a very progressive community, so people's intentions are very good in terms of being understanding, but they're coming from a different place, and so I feel like there is a lot of low–level or maybe not so low–level alienation. People make certain kinds of assumptions about abilities and so on that don't work for me.

KARI: You talk about isolation, alienation, and invisibility, but I hear that you are constantly involved in a lot of things. You seem to be in the flow of what you're doing and of all your passions, which is part of why I asked about your favorite work. But I also want to get a sense of what your goals are, and what you think the outlook is for yourself and/or for the disability community in general or the community in which you live. It sounds like you're very involved locally and broadly through the internet.

LINDA: If I don't remain engaged and involved, then I get depressed really easily and the isolation closes in. A sense of connection is really important to me, especially when there is meaning in that connection.

Some years ago I worked with Boston Self–Help Center as a peer counselor to other people with disabilities. I co–led some support groups and I also did a lot of one–on–one counseling. That was a very intimate way of being engaged. What I'm doing now is not intimate at all in the same way. It's much more about a broader picture, but that one–on–one connection [that I had as a peer counselor] really has meaning. I felt that I was really helping people survive, and do more than survive, come to terms with their disabilities and learn to live with their disabilities. That was an incredibly meaningful role for me because it gave me a lot of strength. I had to find my own inner resources to be able to serve these individuals. It was really powerful to find that inside myself. What matters to me is finding meaning and helping others to find meaning. For example, with some of the responses to my website: the ones that I treasured most were the ones in which people said, "This made such a difference in my life, to read about other people's struggles with their disabilities. This has given me strength; this has helped me to understand my own disability." To be a vehicle, or to help something like that occur in the world, has meant everything to me.