WILKIE COLLINS, POOR MISS FINCH (1872)
A hearty Victorian novel that tells a sensational story with a blind protagonist at the center. Collins very well might have been the first writer to place a disabled woman in the center of a story whose resolution is not found in a return to sight and who’s portrayed as a desirable love interest, eventual mother, and powerful force. Hell, 150 years later, and he’s still one of the only writers to tell this kind of story.
LUCY GREALY, AUTOBIOGRAPHY OF A FACE (1994)
American poet and memoirist who wrote the story of her lifelong pursuit to correct her facial deformities through reconstructive surgeries. Thank you, Grealy, for giving us the gift of your unwavering insight before you left this world.
ALISON KAFER, FEMINIST, QUEER, CRIP (2013)
Theorist who writes stunning prose critically examining the relationship between disability and pop culture, current social and political events, and theoretical constructs. There is a before reading FQC and after reading FQC—I saw the world differently after reading this book.
ANDREW SOLOMON, FAR FROM THE TREE: PARENTS, CHILDREN, AND THE SEARCH FOR IDENTITY (2012)
Nonfiction writer and activist who follows his own openhanded curiosity to explore the intersections between marginalized identities. I am so grateful for the relentless nuance Solomon brings to the world; he takes nothing for granted, and I feel both brave and easy when I look at the world with his voice in mind.
TV Shows
SPECIAL
This Netflix miniseries tells the story of a gay man with cerebral palsy coming to terms with his own internalized ableism and facing the challenge of “coming out” as disabled to his co-workers. It’s written and performed by the real-life protagonist of the story, Ryan O’Connell, and the story is full of moments that draw you into the pain and giggles of disabled living.
SPEECHLESS
This ABC comedy series tells the story of the zany, endearing DiMeo family, which includes JJ, a teenager with cerebral palsy. JJ’s character is played by Micah Fowler, an actor with cerebral palsy. Creator Scott Silveri grew up with a brother who has CP, and his family was a lot like the family depicted in the show. The jokes are good and fresh and make me laugh, and the family sort of reminds me of my own weird family.
Instagram Hashtags
There are so many—I mean SO MANY—amazing disabled folks creating content on the internet, you guys. Once you start looking through these hashtags, I know you’ll find and love them, too.
#DisabledAndCute
#DisabledAndBlack
#DisabledAndProud
#DisabledAndQueer
#DisabledAnd
#DisabledFashion
#DisabledJoy
#DisabledPeopleAreHot
#DisabledParent
#DisabledMom
#DisabledDad
#DisabilityVisibility
#DisabilityAwareness
#DisabilityInclusion
#AbleismExists
#AbleismIsTrash
#AccessIsLove
#BabeWithAMobilityAid
#CripplePunk
#HospitalGlam
#Spoonie
#SickGirlsClub
#SickChick
#TheFutureIsAccessible
#WhenICallMyselfDisabled
#NothingAboutUsWithoutUs
#365DaysWithDisability
Postscript
The day after I submitted the final manuscript of this book—I mean, less than twenty-four hours after I hit “send” on this baby—Micah and I were bewildered to find out we were pregnant. (?!?!) As I shared with you only a few short pages before, we’d never known if my body could conceive. “You don’t know until you know,” my doctors always said.
Seven days later, Micah was diagnosed with colon cancer. This news was ten times more—shocking, petrifying, consuming.
The next few months turned into a blur of scans and peeing in cups. A surgeon, an oncologist, a radiologist, a dietitian, a high-risk OB, an SCI doctor, a pain specialist. Micah’s tumor was declared stage 2 when I was eleven weeks pregnant. When the technician pulled out the jelly and wand at our first ultrasound, I was fully prepared for a somber voice to announce bad news. Instead, a tiny whale baby flashed across the screen—its speck of a heart winking back at us. “Everything is right on track!” the tech said. “Normal, normal, normal!” I’m not used to hearing this word attached to my body. “Really? Are you sure?” I was stunned, and annoyed by my own shock. Micah’s tumor measured nearly 2 inches long; our fetus was 1.25 inches.
The story written for the handsome-faced, thirty-three-year-old man doesn’t include colon cancer. The story written for the plucky disabled woman doesn’t include caregiving and childbearing. As Micah prepped for surgery and my body continued to expand with the growth of an entire human person, it never felt clearer: all of our bodies carry a multitude of strengths and frailties, and sometimes those are one and the same.
And then—you might remember this part—the entire globe reeled under the unprecedented spread of Covid-19. Micah was still recovering from surgery in the crowded ICU as we overheard the news coverage blaring from other patients’ TVs. I sat in the rigid recliner next to Micah’s bed, rubbing my belly—twenty-six weeks round—trying to understand what was happening, what any of it meant. A virus was spreading across the planet, and everyone passionately disagreed on what to do about it.
So much has changed—in my tiny world and the great wide world—since I wrote the first scattered words of this book. My partner’s “healthy” body has revealed its own mortality. Even as he’s recovering from surgery with a good prognosis, he’s grappling with permanent changes in a body he’d always had the luxury of ignoring. My disabled body has flexed its majestic abilities. Even as my liver has faltered, my feet have swollen into shapes unrecognizable, and my bladder has required some extra maintenance and imagination, this pregnancy and our baby have followed a surprisingly typical trajectory. At the very same time, the virus has brought to the forefront the inherent frailties that come with living in a body (whether everyone has acknowledged it or not). Almost overnight, workplaces made themselves more flexible, more accessible. They created accommodations previously pitched as impossible. A giant portion of the American population suddenly found themselves uninsured, simply because a force entirely outside of their control decimated our economy. Hospital policy makers have grappled with whose lives to prioritize in their overcrowded floors, often revealing some of the ugliest ableist beliefs humans still hold close.
As I type these words, my restless baby kicks (and punches and rolls) against my forearms, reminding me he’s coming to live in this world with us, and soon. I have multiple tabs open on my computer where I compulsively check the latest numbers of diagnoses and deaths. My swollen feet are propped up on a giant tub Micah scooted under my desk; like so many of our bodies these days, mine is strained and hanging on. And as I get ready for the birth of both my babies—human and book—I feel an added urgency behind the words I’ve gathered here. Things are changing, fast, and bringing the disabled body to the center of the conversation can only add much-needed, hard-earned insight, nuance, and practicality to the reimagining required of us. Insights like: sorting bodies into a hierarchy of those worth saving is an arbitrary and dangerous practice; health insurance should never be dependent on employment; collective collaboration will carry us so much further than individual pursuits. It’s not that disabled people have all the answers to the problems unfolding around us—good lord, who does?—but if ever there was a time to invite us to the (figurative, social-distancing version of a) table, I’d say we’ve arrived.
Acknowledgments
I am technically the author of this book, I know. My name is right there on the cover. But there are so many people who have helped labor Sitting Pretty into the world. It simply would not exist without the tender, sturdy care of an entire village.
Thank you to my partner, Micah, for reading every millimete
r of every draft ever written for this book. I can see you, pacing from room to room with my laptop in your hands, reading paragraph after paragraph aloud, caring for these stories as if they were your own. I don’t think I can imagine a greater expression of being seen and loved by another person.
Thank you to my parents for continuing to cheer for my writing (despite your gut aversion to every bit of “profanity” I spout across these pages). You’ve been through a whole lot with this youngest-born of yours, but your unwavering love and affirmation has been transformative.
Thank you to my siblings for being my first safe place—for giving me a picture of unfiltered acceptance I will never lose.
Thank you to the open and generous community I’ve found on Instagram. So much of my voice has been cultivated, post by post, with you. In the past few years, you created the space where I found the words to bridge the gap between the messy world around me and the tangle of feelings knotted inside me as you affirmed and bolstered, comforted and challenged me.
Thank you to my first writing mentor, Laura Moriarty, for seeing me as a writer before I could see it myself. If I had not collided with your creative energy when I did, I don’t know if this book would ever have been written.
Thank you to my colleagues in the English department. Despite my relentless insecurities regarding the value of my writing—despite the absurdity of attempting to write a whole book while teaching teenagers every day—you never wavered in your enthusiasm, support, and celebration for this book.
Thank you to my friend and agent, Laura Lee Mattingly. I cannot believe you exist, let alone that we found each other. If I could have conjured my dream agent into existence, she would be you.
Thank you to my editor, Hilary Swanson. The first time we spoke, I felt the room fill with magic sparkles. You saw my vision for this book from its earliest blueprints and held it up for me when I lost my certainty. Thank you also to assistant editor Aidan Mahony, for writing the kinds of marginal comments that tricked me into forgetting that revising is a grueling process.
Thank you to all the disability scholars who interrogated the loudest status quo with sharp intellect and relentless imagination. Thank you for teaching me to do the same.
Thank you to all the disability activists who carried the weight, pushed against the barriers, and fought the battles that gave me the access I have today, not the least of which is my access to the very education that taught me to think and write and imagine this book into being.
About the Author
REBEKAH TAUSSIG, PhD, is a Kansas City writer and teacher with her doctorate in Creative Nonfiction and Disability Studies. She has led workshops at the University of Michigan, the University of Kansas, and Davidson College on disability representation, identity, and community. She also runs the Instagram platform @sitting_pretty, where she crafts “mini-memoirs” to contribute nuance to the collective narratives being told about disability in our culture. She lives in a tiny, old house with her fussy family of tender-hearted snugglers.
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Advance Praise for Sitting Pretty
“Rebekah Taussig’s writing is a gift that keeps giving. Her voice is honest, vulnerable, and welcoming. Rebekah writes about the future she would like to see and share with all of us—and the work it will take to create it together. Much of that work is in listening to others and their lived experiences, and it was a joy to read and listen to Rebekah’s words. This beautiful book helped me ask questions, open my heart, and remind me to look more closely at the world around me and what small part we can all have in making it a better, more accessible one.”
—Grace Bonney, founder of Design*Sponge and author of In the Company of Women
“Sitting Pretty is the book I needed years ago as I grappled with my sense of self and my identity as a disabled woman. I put it down while reading only long enough to collect myself each time waves of emotion crashed over me. Rebekah’s spunky, self-aware wit, combined with education that never feels didactic, makes this book a worthwhile and rewarding read.”
—Emily Ladau, writer, speaker, and disability rights activist
“A compelling personal book whose confidential voice leads the reader into the author’s vividly lived world of disability. Smart and funny, Sitting Pretty does double duty, revealing not only the intimate life of a disabled woman but the flaws of the world around her that seeks to repress and contain her.”
—Lennard J. Davis, Distinguished Professor at the University of Illinois at Chicago and author of Enforcing Normalcy and My Sense of Silence: Memoirs of a Childhood with Deafness
“Rebekah writes in a way that is somehow both world-shakingly profound and beautifully intimate. Her voice is unforgettable in its power to make you feel, question, learn, and grow. There aren’t words for how much the world needs this book.”
—Megan Jayne Crabbe, bestselling author of Body Positive Power
“Taussig goes beyond empty inspirational jargon, forcing readers to consider the value of the real-world improvements that can emerge from centering underrepresented voices. An engaging, up-close view of the need for structural change regarding disabilities in this country, Sitting Pretty is a solid combination of theory and personal experience.”
—Kirkus Reviews (starred review)
Copyright
SITTING PRETTY. Copyright © 2020 by Rebekah Taussig. All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the nonexclusive, nontransferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, downloaded, decompiled, reverse-engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereafter invented, without the express written permission of HarperCollins e-books.
Cover design: © Micaela Alcaino
FIRST EDITION
* * *
Library of Congress Cataloging-in-Publication Data
Names: Taussig, Rebekah, author.
Title: Sitting pretty : the view from my ordinary resilient disabled body / Rebekah Taussig.
Description: First edition. | New York, NY : HarperOne, 2020
Identifiers: LCCN 2019056133 | ISBN 9780062936790 (hardcover) | ISBN 9780062936813 (ebook)
Subjects: LCSH: Taussig, Rebekah. | Paraplegics—United States—Biography. | Women with disabilities—United States—Biography. | Disabilities.
Classification: LCC RC406.P3 T38 2020 | DDC 362.4/3092 [B]—dc23
LC record available at https://lccn.loc.gov/2019056133
* * *
Digital Edition AUGUST 2020 ISBN: 978-0-06-293681-3
Version 07072020
Print ISBN: 978-0-06-293679-0
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