My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities

369 Pages·2009·1.98 MB·English

by  Yantra Bertelli

This is the most important book I've read in years. Whether you are subject or ally,
My Baby Rides the Short Bus will open you—with its truth, humanity, and poetry.
Lucky you to have found it. Now stick it in your heart.
Ariel Gore, author, The Mother Trip: Hip Mama's Guide
to Staying Sane in the Chaos of Motherhood
Smart, diverse, inspiring. My Baby Rides the Short Bus reminds us of what we all
have in common and how much more work there still is to be done.
Vicki Forman, author, This Lovely Life:
A Memoir of Premature Motherhood
For the collection’s diverse and candid discussion of such topics as diagnosis,
education, family, community support, respite and relearning to stand up in order
to be seen, heard, respected and believed, I hereby declare this book required read-
ing for outsider parents of all stripes, their allies, school psychologists, therapists,
social workers and child advocates!
Jessica Mills, author, My Mother Wears Combat Boots:
A Parenting Guide for the Rest of Us
If only that lady in the grocery store and all of those other so-called parenting
experts would read this book! These true-life tales by mothers and fathers raising
kids with "special needs" on the outer fringes of mainstream America are by turns
empowering, heartbreaking, inspiring, maddening, and even humorous. Readers
will be moved by the bold honesty of these voices, and by the fierce love and
determination that rings throughout. This book is a vital addition to the public
discourse on disability.
Suzanne Kamata, editor, Love You to Pieces:
Creative Writers on Raising a Child with Special Needs
The contributors of this important and necessary anthology span a range of
decades from a time when "defective babies" were institutionalized, to the nascent
civil rights movement, straight on to a new era of independent living. The fami-
lies sharing these stories live and often struggle with the consequences of illness,
injury, genetic inheritance, or sometimes a perplexing and mysterious combina-
tion of factors, insisting that the world recognize a basic fact: We are not science
experiments.
Disability is a uniquely humbling and equal experience, sometimes expected, often
striking without warning. These parents are honest about both the distressing and
illuminating facts of their lives; the stories are caustic, exhilarating, fierce, funny,
harrowing. Yet despite the intricate and often overwhelming challenges they face,
these parents and children never succumb to maudlin stereotypes, because, as one
contributor learns, “it isn't saintly to take care of someone you love.”
Bee Lavender, author, Lessons in Taxidermy:
A Compendium of Safety and Danger
There are smaller groups within every subculture, just the way there are mini
revolutions within every larger revolution; and often, as well, the realization that
everyone has not been included, after all. When any such group of people comes
together to seek answers and share questions—uniting personal voice and experi-
ences into a larger chorus—it creates a breakthrough that enriches all movements
for social justice, as well as individual lives.
My Baby Rides the Short Bus is such a groundbreaking work—wonderful,
thought-provoking, and diverse in different abilities of the different children. Little
gems of life all buried in here, great tales. This book advances alternative parent-
ing consciousness raising; and we need many more (on different separate themes
within the multitude of those disenfranchised) in order to strive towards a com-
munity where no one will be left behind.
This is a collection of beautifully written stories, incredibly open and well articu-
lated, complicated, and diverse: about human rights and human emotions. About
love and difficulties; informative and supportive. Wise, non-conformist, and
absolutely punk rock!
China Martens, author, The Future Generation:
The Zine-Book for Subculture Parents, Kids, Friends and Others
My Baby Rides the Short Bus:
The Unabashedly Human Experience
of Raising Kids with Disabilities

My Baby Rides the Short Bus:
The Unabashedly Human Experience
of Raising Kids with Disabilities
Edited by
Yantra Bertelli, Jennifer Silverman,
and Sarah Talbot
My Baby Rides the Short Bus:
The Unabashedly Human Experience of Raising Kids with Disabilities
Edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot
ISBN: 978-1-60486-109-9
LCCN: 2009901395
Copyright ©2009 Yantra Bertelli, Jennifer Silverman, and Sarah Talbot
This edition copyright ©2009 PM Press
All Rights Reserved
PM Press
PO Box 23912
Oakland, CA 94623
www.pmpress.org
Cover art by Liz Baillie
Index by Chris Dodge
Layout by Kersplebedeb
Printed in the USA, on recycled paper
Foreword
A
lmost ten years ago, three moms met on an online community bulletin
board for “alternative” parents. We were activists, but it wasn’t for a
few more years that we discovered the most defining thing we would have in
common: we are the parents of disabled kids. Our lives came together over
the Internet and things changed. We all became parts of blended families
as Yantra and Sarah became a couple, Jennifer remarried and eventually
became a parent of two. Throughout, the diagnoses, the symptoms, and
the services kept rolling in. We talked each other through advocating and
strategizing, and we began to know a few things.
When friends from the online community Hipmama.com put together
a conference in 2004, we offered a workshop on disabilities and parenting.
In a windowless room, we chatted about what it felt like living with our
kids while one of them obsessively watched the same movie for the 600th
time and the other flipped pell-mell through a phonebook. Not a lot of
other parents showed up, and most of them came only out of curiosity, not
need. It didn’t matter who showed up to the three of us, because for once
we were subject, not object. We had pulled ourselves out of cautionary tales
about things that can go wrong with babies, out of isolation, and pulled
ourselves into the center of our own stories together.
We decided to put together a zine, and this book was born of our work.
Raising a child with a disability brings a whole new level of isolation
to “alternative” parents, who do not fit into the mainstream through
circumstance, identity, or choice, and who carefully consider the
implications of our parenting. Disability forces us to reach back toward
the mainstream while moving us irrevocably outside of it. We might have
been planning to put our children in small, alternative schools before
we knew they were disabled, and now, after the diagnosis, find ourselves
fierce advocates of their inclusion in traditional classrooms. While we
might have had home births planned, we may spend years in hospitals
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praying for the success of invasive medical procedures. While we might
have fantasized about anarchist communes before our disabled babies
entered our lives, we find ourselves lobbying the legislature for increases
in funding to state bureaucracies. We, who had previously rejected the
institutional structures of mainstream culture or found ourselves on the
margins to begin with, discovered that we are clinging to the slim hope
that they will save us after all.
We are remarkably absent from the public eye. When we are in the me-
dia, it’s usually about a miracle cure that made some starlet’s child more
normal. Or there is the occasional story that spotlights a stereotypical
American (white, middle-class, two-parent, heterosexual) family showing
off the gifts of a savant or highlighting a feel-good donation made to a
poor, struggling family with special needs kids. At worst, our families are
objects of ridicule in alternative and mainstream press sources.
Take, for instance Denis Leary’s 2008 book Why We Suck, in which he
stated that kids diagnosed with autism are just stupid or lazy and their di-
agnoses are just for their parents who “want an explanation for why their
dumb-ass kids can’t compete academically.”
Comments like this poke fun at the people in our society who are too
visible for comfort, and they function to enforce invisibility. When your
everyday experience only ruins a joke, you have to decide to stand out
as both, “one of them” and humorless, or blend into the wallpaper of a
mythical normalcy. These stories erase completely the reality that all chil-
dren learn at varying rates, making our complex reality a bummer of a
laugh-kill.
As parents of differently-abled children, we are often put on pedestals.
People wonder in awe about how we cope, or hand us platitudes about how
we have landed in a different but wonderful country where we need simply
to dream new dreams for our special angel children. But when we’re out
in public, our “special angel children” are most often stared at and treated
like enigmas. Our children are inconvenient, awkward, and difficult. Their
parents—even those of us with a lot of tattoos—are usually struggling
mightily to be less obtrusive. Those who wonder aloud how we do it are re-
ally just highlighting for themselves (and us) that they will never have to.
The truth is that our kids aren’t angels; they’re people with big chal-
lenges, and their challenges make our lives as parents incredibly compli-
cated, messy, and sometimes heartbreaking, no matter how much we love
them. As parents who are already marginalized by politics, sexual orienta-
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tion, gender, race or ethnicity, parenting philosophy, our own disabilities,
economic status, blue hair, piercings, or something else that makes us un-
like the camera-friendly special needs family America knows and adores,
it can be harder to find support among other parents or be taken seriously
by the teachers, therapists, and other professionals on whom we often have
to rely to get the services our kids need.
When we three parents made the leap of taking a small zine and turning
it into an anthology, we strove to make the voices represented as inclusive
as possible in terms of diversity—class, gender, race, and struggle—to dis-
tinguish this project from others. Part of valuing that diversity included
working to preserve the authenticity of the work of the authors, including
valuing voice over grammatical convention from time to time. As is the
nature of anthologies, there was a submission process for accepting pieces,
and we extended our deadline twice to encourage a wide range of writers
to contribute. On many levels, we have succeeded: the contributors here
range from a Burmese mother overcoming her own physical disability as
she works through her son’s challenges, to a lesbian minister who becomes
a foster parent and advocate of a developmentally delayed teenager not
much younger than she is, and a “quirky” single mama who quit school at
the age of sixteen, yet successfully took on her son’s school system to find
an accessible placement that accommodated his cerebral palsy. Still, the ra-
cial and cultural diversity of the writers may not be immediately apparent
to the reader, as some writers considered race and culture central to their
story and some did not mention their backgrounds.
Statistically, the overwhelmingly female voice in this book makes sense.
Numerous studies from the United States, United Kingdom, Canada, and
Turkey have shown that women take on an especially high responsibility
of caring for children with disabilities compared to men*. And while we
definitely have an economic range within these contributors (mostly work-
ing-class to middle-class) we received almost no submissions from parents
who are economically struggling the most. Having the time and space to
* R.Hassall, J. Rose, and J. McDonald, “Parenting Stress in Mothers of Children
with an Intellectual Disability,” Journal of Intellectual Disability Research 49 no.6
(June 2005); M. D’Ottavi, C. Spearin, and C. Andrzejewski, “The Division of
Household Labor in Families with a Disabled Child: Insights from Quantitative
and Qualitative Research” (Brown University; R. Ceylan and N. Aral,
“Hopelessness Levels of Mothers with and without Disabled Children,” Pakistan
Journal of Social Sciences 4 no. 6 (2007).
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