Sparkly rainbows and miracle cures: those are what too many books about parenting children with special needs are made of. We may succumb to them during our initial post-child's-diagnosis research frenzy, but the truth is most of our kids have already told us who they are. Our job is not to chase the sparkly rainbows, but to plant our feet on the ground and start supporting those children.
To do that, we need books that tell us the truth about parenting our kids. We need realistic advice. We need the tools to fight for our children, and ourselves. We need hope tempered with practicality. We need empathy. And most of all, we need to hear voices that echo our own.
Sarah (Sal) Talbot, Jen Silverman, and Yantra Bertelli are sparkly-rainbow-rejectors who were not able to find books that reflected their own experiences as parents of children with special needs -- so they created the new anthology, My Baby Rides the Short Bus (disclosure: I am one of more than 30 included authors). Here's what they had to say about why and how the book came to be:
Tell us how the three of you knew My Baby Rides the Short Bus was needed and necessary.
Sal: Ariel Gore did a reading from her work in Hip Mama at the UW Book store in 1996 or so, and I asked her if she might publish more essays from parents of kids with disabilities. She asked me to write one. That's when I understood that it wasn't just that I didn't have the time to look for good books by parents of kids with disabilities, there just weren't that many out there. I thought about the experiences of the parents I knew and the perspective that educators I work with have. It seemed like the educators were a little bit clueless about what it means to parent a disabled child; the kinds of mourning one goes through, the things one has to celebrate. I felt that as an educator, I was constantly putting on my parent hat to try to get my colleagues to open their minds a bit. The educational community has really embraced the book. I'm thrilled to be able to give it away and know that people are now getting more than just my perspective on what this all feels like.
Jen: I wasn’t seeing our story in any of the books that I had read in the years since my son’s initial diagnosis nine years ago, and I’m a pretty voracious reader. There wasn’t much I could relate to in what’s been published with regards to my son’s level of functioning, my gallows humor, my (radical) politics or my struggle -- especially when I was a low-income single parent. Most of what I found was really preachy or treacly. I know that for some people the idea of a piece like Welcome to Holland is reassuring, but for me it made me want to scream. My hope for this project was that we’d give voice to what was being left out of the dialogue of parenting kids with disabilities.
Yantra: So much of our lives are open and on display everyday for the general public to witness. Our kid’s challenges and our desire to be a part of the world surrounding us causes heads to turn and we knew we were not the only ones. This high visibility can be silencing. I think our book shakes up this power dynamic a bit and that is a refreshing change to our day to day experiences.
How did you find a publisher? Was the publishing process different from what you anticipated?
Jen: In retrospect it was remarkably easy to get a publisher, and it had a lot to do with networking. The three of us had done a zine together in 2005 with the same name on the same topic, and didn’t have plans to do a follow up. One day I was daydreaming and thought, what if we did a book and reached a larger audience? There was no one I’d rather work with than Sarah and Yantra, so I roped them into it.
I contacted a publisher I had met through some activist work, and queried him. It was obvious that I really had no idea what I was doing, and he walked me through the process of putting together a formal book proposal. We drafted it over email, since they live in Seattle and I’m in NYC, in December of 2006. It didn’t work out with that first publisher, but he had given great advice and we had a kick-ass proposal that included possible content and market research. It was sent out to a few places, and we got rejected from three publishers who all thought it was a good idea but didn’t fit into their publishing houses. A feminist press that we approached told me it was “too niche,” and I got a little depressed and took a break from sending out the proposal.
In the meantime, a friend mentioned the project to a mutual acquaintance, Jeffrey Lewis at Bluestockings Bookstore in Manhattan. Jeffrey forwarded the proposal to his friends at the newly established PM Press, within a few weeks we had a book contract. As far as the process itself, that was sometimes grueling, especially since we were all working full-time, parenting our kids, and all in graduate school at some point in the process. From the first query to publication was three years, including getting and editing the submissions and putting it all together.
How has My Baby Rides the Short Bus been received?
Jen: It’s only been about a month and a half since we officially published, so it’s kind of hard to gauge at this point. I know we’ve been selling really well from the publisher’s perspective. I’d love to hear more feedback, and folks can email us at firstname.lastname@example.org. Individually, people have been telling me how much they love it, but that it’s a hard book to read in one sitting. At the few readings I've been a part of so far, people have been asking really thoughtful questions and saying they're thankful we've done the book.
Yantra: We have tried to give the book to all the teachers, therapists, social workers, personal care workers, behavioralists, and doctors who have worked with our family over the years. People have been shocked that we had the time to work on this project and we’ve gotten a lot of positive feedback, questions, and a few calls asking for “advice.” We would love to hear more.
The author list is extensive, and their ages and children's special needs varied. How did you recruit this range of voices? Was it as broad a range as you'd hoped?
Sal: We worked really hard to get the call out on all the blogs we knew about. We asked friends to recruit specific people they knew. We bothered friends who weren't sure they wanted to write until they produced something, then bugged them for revisions. Still, I feel like the end product is still skewed toward wealthy and middle class families, toward moms over dads, toward white folks, and toward school-educated people. Maybe that's who has the time, space, privilege to write. I wish we could have overcome that better.
Jen: I agree with Sarah about the book being more about middle-class families, maybe not so much wealthy, but if there was a failure on our part it think it’s that. I wish we had heard from a more diverse economic range, and more dads, younger parents, folks living in intentional/alternative communities and people of color. But at a certain point we had to finish the project with what we had. I’m overall really happy with the end product.
Did any of the stories influence your own perspective on parenting?
Sal: All of them. Some of them make me feel like I'm not doing enough as a parent. Some of them make me rethink my perspective on parenting and advocacy. All of them made me feel lucky as a reader and editor. All of them changed me.
Yantra: I am always growing and shifting my approaches to parenting. Not huge changes, but little bits at a time. Our book reminded me how many parents hold themselves up to high expectations, how sometimes our own anxiety and grief pulls us down, and the ways most folks work through this process and gain new understandings of the parents they’ve become. The voices in this book have reminded me to be patient and generous with myself as a parent.
Liz Baillie's cover art was controversial. Can you tell us why, and what happened as a result?
Jen: We drafted Liz as the cover artist because her cartooning style had the kind of feistiness that we were trying to bring to the book. Since she’s also a friend, there was a trust there that she would really listen to what we were trying to accomplish and reflect that in her art. Liz was concerned, rightly so, with making sure the cover didn’t become a caricature of kids with disabilities. She originally had two of the kids on the cover sticking their tongues out to sass each-other. One of the book contributors brought to our attention that it could be seen as a stereotypical image, like this is what disabled kids do -- stick their tongues out. It was concerning to us that the audience we expected to get the cover didn’t, and that might engender hostility towards the book. We did a poll on our blog page, and about 20% of the respondents said they were bothered by it. Even though it was the minority who were upset, we asked Liz to change the boy’s expression to a frown. So that resolved the cover debate. My thought is that anyone who makes it past the title without being offended is going to appreciate the art, and it printed beautifully.
Are you planning any related books or sequels?
Sal: This book does make me want more about my own experience with my disabled son. It does make me want to tell my story, which is not a story of miraculous recovery, in more detail to more people. That said, I don't have a proposal ready to go out or anything.
Yantra: A girl can dream. However, this project has revealed how little time I actually have available for such possibilities, maybe someday.
As an activist, what sort of lasting change are you hoping this book effects?
Sal: I hope that this book gives more parents the idea that they should write about their experiences -- not their "cures" for autism or any other disability, but their authentic experiences growing up with disabled kids. I think that kids with disabilities do tend to grow us up -- push patient people to grow their patience, smart people to grow their intellect. I hope that more people write about that, and fewer people write about miracles and angels and such in relationship to disability and children.
Jen: Prior to the book, I spent a few years presenting at conferences to other activists about the need to support parents and in my case parents of kids with special needs to make movements inclusive and sustainable. I think that extends naturally to communities in general -- that in order to truly be sustainable, you have to include all members. I hope that the book gets people thinking about what they can do to make sure that’s the case. Right now we’re facing scary times in terms of budget cuts to services for the developmentally disabled. We need our friends and allies to stand up for us and recognize that whether we like it or not, many of us depend greatly on having these services and they need to be protected. I also really like what Mitzi Waltz says in her essay, and I’m paraphrasing, but that our alternative communities need to get educated and step up to offer mutual aid, acceptance, and nurturing.
Yantra: I like what Jen says here about inclusive and sustainable communities. I hope our book helps its readers to stretch their definitions of inclusion and helps complicate mainstream ideas around individualism that silence or obscure the ways children are connected to their families and societies. Inclusion is a process and the work is never ending.
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