Learning from My Daughter
The Value and Care of Disabled Minds
EVA FEDER KITTAY
1
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Library of Congress Cataloging-in-Publication Data
Names: Kittay, Eva Feder, author.
Title: Learning from my daughter : the value and care of disabled minds / Eva Feder Kittay. Description: New York, NY : Oxford University Press, [2019] | Includes bibliographical references.
Identifiers: LCCN 2018031470 (print) | LCCN 2018047893 (ebook) | ISBN 9780190844615 (updf) | ISBN 9780190844622 (epub) | ISBN 9780190844639 (online content) | ISBN 9780190844608 (cloth : alk. paper)
Subjects: LCSH: Children with disabilities—United States. | Child rearing—United States. | Values—United States.
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To my children, Sesha and Leo, who each in their own way guided me through parenting with their wisdom and love
FOREWORD: SINGING WITH SESHA
“Just sing to her. She loves music.”
I was more nervous about meeting Sesha Kittay than I’ve ever been about meeting anyone, but Sesha’s mother, Eva, alleviated my anxiety with these simple words of advice. I had met Eva some months earlier at a philosophy talk, but it was on my first visit to Eva and Jeffrey’s home in Rye, New York, that I met Sesha. Although this was thirty years ago, I still have a vivid memory of the occasion.
I knew of Sesha—that she had very significant cognitive and physical disabilities; that she lived with Eva, Jeffrey, their son Leo, and a full-time care provider, Peggy; that she required assistance with just about everything; and that she could not talk—but I didn’t know what to expect. How would I introduce myself? Should I shake her hand? Would she be able to clasp mine? What would I say—and in what tone of voice? She was nineteen years old at the time, but with no discernible IQ. Should I talk to her the way I’d talk to an adult? Or to a toddler?
After I said some sort of greeting, Eva and I went for a walk, with Sesha in her stroller, and I sang a Scottish lullaby, “Rocking the Cradle,” not because I thought of Sesha as a baby, but because it’s a fun tune to sing a cappella and it usually gets a good reception.
Sesha listened, politely, but I could tell she wasn’t really into it. I started to panic, thinking, “Oh, no, this isn’t working. She doesn’t like my singing. She doesn’t like me!” Although she’s able to be entranced by music she’s never heard before, Sesha prefers—especially when encountering a stranger—music that’s familiar, something from her vast repertoire of favorites ranging from “Baby Beluga” (at the time I met her) to Mahler’s symphonies (these days). Eva suggested we sing something by Elvis Presley, so we knelt down to Sesha’s level and started singing “Love me tender, love me sweet, never let me go,” and by the time we got to “tender,” Sesha was beaming at me. (I think I had her at “love.”) What had seemed to me to be an unfocused, uncomprehending stare became
a delighted, adoring gaze. And then she reached out and hugged me! (She also grabbed my hair and pulled me into her, but I’d been warned about that and quickly extricated myself.) I’ll never know what she was thinking, but I was smitten. From then on, I was never at a loss for things to do with Sesha.
I didn’t know a lot of Elvis songs, but it turned out Sesha also loved Rodgers and Hart, so I sang “My Romance,” followed by “My Funny Valentine,” which soon became one of her favorites. After getting to know Sesha better, I had to modify the lyrics—“Your looks are laughable, unphotographable / Yet you’re my favorite work of art”—because Sesha is one of the most photogenic people I know. I also found it increasingly hard to sing “Is your figure less than Greek? / Is your mouth a little weak? / When you open it to speak, are you smart?”— because I was learning so much from Sesha, so I would, with a gesture or an incredulous look, indicate that I thought those questions were ridiculous. But the ending has always rung true: “Don’t change a hair for me / Not if you care for me / Stay, little valentine, stay / Each day is Valentine’s Day.” And it is with Sesha. Whenever I see her, it’s a lovefest.
My husband, Tom, and I became regular visitors to the Kittay household, and Jeffrey, who is a very talented jazz pianist, would accompany me in a command performance for Sesha every time. She was, and is, the best audience I’ve ever had and that’s because, I came to realize, I’m not performing when I sing with her. Music is something we do together. Whether we’re listening to music or playing rhythm instruments or clapping our hands against each other’s hands, she’s completely engaged. Singing with her is like singing with a jazz combo in that it’s a kind of improvisation, and she’s totally present in the moment. She’s not, as I once heard someone describe most people, “temporarily abled and permanently distracted.”
Her ability to focus so intently enables Sesha to appreciate many things with an unusual intensity—the colors, shapes, and smells of flowers; the tastes of her favorite foods; the slippery coolness of water on her skin when she’s in the pool. Georgia O’Keeffe wrote that “nobody sees a flower—really—it is so small it takes time—we haven't time—and to see takes time, like to have a friend takes time.”1 I can’t know how Sesha sees flowers or hears music, but I can see that she takes more joy in them than many, if not most, people ever take time to do. Likewise, to learn these things about her, to be her friend, has taken time. My main purpose in writing this foreword is to give those who haven’t had the opportunity or time to get to know Sesha a sense of who (I think) she is and of what it’s like to be her friend.
1 This quote is attributed to Georgia O’Keeffe and dated 1939 in O’Keeffe: Georgia O’Keeffe Retrospective Exhibition and Catalogue, edited by Lloyd Goodrich and Doris Bry (New York: Whitney Museum of American Art, 1970), 17.
It’s difficult to convey the delight those of us who know Sesha take in her company. She cannot speak, let alone have a conversation or engage in witty banter. But in her presence, one comes to realize that these things are not really necessary for communication, after all. It’s said that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.2 Here, as in so many other matters, what one can learn from interacting with Sesha gives one a deeper understanding of one’s interactions with people who aren’t Sesha—and new insights into one’s own self, as well.
At that first meeting, Sesha made me feel like she wanted us to become friends. I’m not saying that’s how she felt—how could I know?—but the way I felt was enough to motivate me to figure out how to relate to her in spite of my awkwardness. Getting to know her has taken time, as getting to know someone always does. I had to learn how to listen to her various silences, how to read her expressions and her movements, how to tell when she’s not feeling well, when she’s not in the mood for me to sing, and when she’d prefer the company of Eva or Jeffrey or another of her long-time care providers.
It took me many years to realize how much I was learning from Sesha, and it was only after reading Learning from My Daughter: The Value and Care of Disabled Minds that I came to appreciate just how much Sesha has taught me about philosophy and about how to live. Much of this knowledge was secondhand, taught to me by Eva, who has been an invaluable teacher and mentor of mine from the time we met. This book not only expands and deepens Eva’s previous work on care ethics and what she calls “dependency work,” but also raises metaphysical questions about what it is to be a human being; epistemological questions about how we come to know one another; ethical (in the Greek sense) questions about what makes a life a good one, a flourishing one, one worth living; and questions about the role of emotions and other attitudes— joy, gratitude, curiosity—in our lives. What Eva has learned from her daughter and shares with us in this book are transformative lessons for anyone interested in philosophy, feminist theory, contemporary politics, or simply how to live a fully human life.
Philosophers have long pondered what it is to be a human being, a person, a member of “our” moral community. This question—what is it to be human?— has often been conflated with the question: What is it that makes human beings different from everything else in the universe? I don’t share this preoccupation with discerning what makes us humans different from everything else in the universe. Consciousness? A soul? language? The ability to use tools? To laugh? To play? To be honest, I never felt the need to say just what makes all human beings
2 It’s often said that Maya Angelou said this, but this is apparently a misattribution.
of equal moral worth until the moral worth—the full humanity—of people like Sesha was called into question by some of my fellow philosophers.
Licia Carlson observed, after studying what philosophers have had to say about severe cognitive disability, that “Plato decreed that ‘defective babies’ should be left to die. Locke and Kant defined those who lack reason as less than human. And most troubling of all,” she noted, “when I looked for contemporary discussions about this group, most of the references I found were in discussions of animal rights, asking pointedly whether the ‘severely mentally retarded’ could be distinguished from non-human animals in any meaningful sense.”3 It’s not wrong to ask this question, just as it’s not wrong to speculate about whether there’s any morally significant difference between human beings generally and nonhuman animals. But it’s deeply misguided to assume a priori that there isn’t—and couldn’t be—any such difference.
Some prominent contemporary philosophers have asserted, without any empirical support, that those who, like Sesha, lack sufficient cognitive abilities, have the moral worth of a pig (which is less than that of nonsimilarly-impaired persons).4 Jeff McMahan asserted, in a 1996 article, that “the profoundly cognitively impaired are incapable . . . of deep personal and social relations, creativity and achievement, the attainment of the highest forms of knowledge, aesthetic pleasures, and so on.”5 I can confirm Eva’s testimony, lest some think it’s skewed by a mother’s bias, that Sesha is capable of all of these things, except for “the attainment of the highest forms of knowledge”—but, then, I suspect most of us are incapable of this.
If we agree that philosophy begins in wonder, as Plato and Aristotle thought, how can some philosophers lack the curiosity needed to learn even a few basic things about people like Sesha? How can they not take any interest in the lives such people actually live? This lack of curiosity is profoundly unphilosophical, an oddly anti-intellectual attitude for those who value the intellect above all. It isn’t just the moral failing of not caring; it’s the epistemic failing of not paying attention. Philosophers who assume that Sesha has nothing to say, for no better reason than that they have not taken the time to understand her or to listen to those who have, are like children who assume speakers of a foreign language are talking gibberish. This is willful, culpable ignorance.
3 Quoted in Eva Feder Kittay and Licia Carlson, eds., Cognitive Disability and Its Challenge to Moral Philosophy (Malden, MA: Wiley-Blackwell, 2010), 396.
4 See, for example, Peter Singer and Jeff McMahan’s exchange with Eva Kittay on this issue at the Conference on Cognitive Disability: A Challenge to Moral Philosophy, held at Sony Brook University, Manhattan, in September 2008, quoted in Kittay and Carlson, Cognitive Disability and Its Challenge to Moral Philosophy, 407–9.
5 Jeff McMahan, “Cognitive Disability, Misfortune, and Justice,” Philosophy and Public Affairs 25 (1996), 8.
“The unexamined life is not worth living,” said Socrates before he drank the hemlock. Some may think that this, if true, implies that the examined life is worth living, but it does not. For some, the examined life is worth living, but the examination of a life need not be what makes it worth living. When I advise first-year students at the beginning of the academic year, I urge them to think not only about how to fulfill distribution requirements and to plan majors and minors. “Even more important,” I say, “is to find out what is going to sustain you in hard times—and then develop and nurture that. You may end up being a teacher or a doctor, but it may be painting—or dance—that you turn to, to get you through difficult times. As important as anything else—and, at times, the most important thing in your life—is to know what makes your life worth living.”
Not long after I met Sesha, I had to figure out how to carry on after a near-fatal rape and attempted murder. My intellect, my ability to reason, was of no help. At our lowest point, a few months after my assault, I turned to Tom, who was struggling with his own trauma, and said, “Just give me one good reason to carry on,” and he couldn’t. We talk about taking terrible twists of fate “philosophically,” as if stoicism were the only game in town, but I found no consolation in philosophy. Things had stopped making sense, and life was unbearable.
My self-esteem plummeted. I couldn’t write, teach, or even walk down the street by myself, and I didn’t know if I would ever be able to do these things again. I was dependent on Tom for so much and felt of no use to anyone. Coming to appreciate what Sesha had to offer helped me to carry on when I felt worthless. If I didn’t value her for her ability to be self-sufficient, productive, and gainfully employed, then why should my own self-worth depend entirely on such things? In addition, Sesha had what I lacked and needed most at the time: the ability to experience joy and to bring joy to others.
I had to relearn how to take pleasure in life. I had to work at it. It wasn’t philosophy that sustained me then. It was music—and learning, in a deeper way than I’d known before, how to care for, and be cared for by, other people.
My friendship with Sesha also enabled me to navigate my relationships with loved ones who became cognitively (and otherwise) disabled. In the last several years, as my parents’ health failed and my father developed severe dementia, I was immensely grateful to have learned from Sesha how to communicate with them in ways I wouldn’t have known before. Of the many things I’ve learned from Sesha, perhaps the most significant was how to be with my father as his dementia worsened.
There were times when losing my father by degrees to dementia was agonizing. He’d had a keen scientific mind and had, from the time I was young, encouraged me in my intellectual pursuits. At first, his dementia revealed itself as paranoia and anxiety, as well as short-term memory loss. As it became more severe, however, and robbed him of his ability to talk, it brought him a kind of
serenity I’d never seen in him. Especially after his dementia had progressed to the point where he didn’t realize he had it, my father took great pleasure in things he hadn’t taken pleasure in before. I would walk around the grounds of the memory care facility where my parents lived, with my dad in his wheelchair—just as I walked with Sesha in her stroller—and, though he couldn’t speak, he would marvel at mundane things: cars going by, airplanes overhead, people walking their dogs. He would pause to look, really look, at a flower, pointing to it and turning to me with an expression that said, “I’ve never seen anything like this in my entire life! Have you?”
My father’s severe cognitive disability brought out in him an intense delight in music. The staff at the facility were aware of the importance of music in the lives of people with dementia and not only had many musicians come to perform, but also arranged for the residents to sing along with the staffers every day. For the last year or so of his life, even though my father couldn’t talk, he could sing and, to my astonishment, sang lyrics to songs I didn’t realize he’d ever known.
Music, Naomi Scheman once commented in a paper of mine, “expresses the joy of being alive, [and] part of the joy is the shared intelligibility of it.” My friendship with Sesha taught me how to experience that joy with my father in his final months and enabled me to see that he was still present and very much himself, even when he could no longer take care of himself or say a single word.
I’ve enjoyed hearing Sesha’s musical tastes change over the years, as tastes do. She developed a love of opera as a child, having been exposed to it by Peggy in her early years. Jeffrey and Eva played classical music for her, as well as lots of kids’ music, including Peter, Paul, and Mary and, later, Raffi. Jeffrey tried to get her to like jazz, but Miles Davis just wasn’t her thing. In time, she refined her own tastes, growing tired of children’s songs and choosing composers she really loved. She was fortunate to have been exposed to many varieties of music, but she chose the musical genres and idioms that she wanted played for her again and again.
We have similar musical tastes. We both enjoy musicals—“My Fair Lady” is a current favorite of hers—and she loves Glenn Gould’s performance of J. S. Bach’s Goldberg Variations, as I have since my youth. She gets a kick out of hearing variations on songs she already knows and laughs when one does something unexpected. She thrills to Beethoven’s “Ode to Joy” and, at times, finds the frenetic protracted finale of the movements of his Fifth Symphony hilarious, as do I. When Jeffrey spoke with Oliver Sachs about Sesha’s musical tastes and sense of humor, Sachs said, “It is not that she has just musical sensitivity. She has musical intelligence,” which she surely does. Her seemingly spontaneous delight in music comes from a highly sophisticated appreciation of it.
None of this implies that the ability to appreciate music is a uniquely human quality. And the fact that my deep and abiding friendship with Sesha is grounded
in, though not entirely based on, our mutual love of music doesn’t imply that her musicality is what makes her human or is the only thing that makes our friendship possible. To be sure, music helped me come to appreciate Sesha’s full humanity, and it continues to give our friendship the unique form that it has. But noting that does not mean that I am substituting one individualistic trait—an ability to appreciate music and musical humor—for another one—rationality or a measurable IQ—as a criterion for full moral personhood. Sesha’s musicality is more than an individualistic trait; it is thoroughly relational. She couldn’t have developed it on her own, without Jeffrey, Eva, Peggy, and others. It’s one of her ways of being in community with other human beings.
In presenting this portrait of Sesha, I’m mindful of the hazards of speaking for others and the special dangers of speaking for the cognitively disabled. I’m not here attempting to speak for Sesha, but, rather, talking about the ways she’s informed and enriched my life, because I think that’s something that those who would deny her full humanity need to hear. Like the imperative Rilke heard upon seeing an ancient Greek sculpture—“You must change your life”6 the lesson I learned from Sesha was, “You must change how you think about your life.”
With this book, Eva has given a gift to the philosophical community and beyond—a sense of wonderment at the extraordinary person who is her daughter, Sesha. I urge you, who are holding this book, to take the time to read it and to take what’s said in it seriously, even if you end up disagreeing with some of it, because it has invaluable lessons for you, whoever you are and whatever you’re thinking about. Even—especially—if you’re inclined to disagree with it, it’s imperative for you to read it, because you can’t reasonably disagree with a position if you don’t know what it is and what the evidence for it is.
Now, when I see Sesha, I’m not nervous, just excited to see a dear friend I don’t get to see her nearly often enough. Even before I greet her, when Eva announces I’ve arrived, she grins in anticipation. I hug her and kiss her cheek and tell her how happy I am to see her, and she pulls me close (without grabbing my hair, something she’s thankfully learned not to do), and I sing, softly, so only she can hear, “Don’t change a hair for me / Not if you care for me . . . .” Then she throws her head back and laughs as only she can laugh—a swiftly inhaled breath that sounds like pure joy—and I think, oh Sesha: “You’re my favorite work of art.”
Susan J. Brison September 8, 2018
6 Rainer Maria Rilke, “The Archaic Torso of Apollo,” in The Selected Poetry of Rainer Maria Rilke, ed. and trans. by Stephen Mitchell (New York: Vintage Books, 1984), 61.
PREFACE AND ACKNOWLEDGMENTS
Sesha is my daughter. Her significant cognitive and physical disabilities have challenged my understanding of philosophy even as I first became a professional philosopher. The life I have led with my daughter has provided me with a set of lessons that I have shared with readers for well over two decades. These are lessons that I believe are worthy of, and require, philosophical meditation and reflection. They touch on some of the most profound and fundamental questions philosophers have raised. In putting them forth, not only do I interject myself into the discourse of disability, but I also make room for Sesha in philosophical discourse.
This work can be viewed as a follow-through of many of the themes I articulated in Love’s Labor: Essays on Women, Equality, and Dependency. There I put the narrative of Sesha in the last two chapters. Only when the philosophical points had been argued in the earlier chapters did I want to put forward the motivating concerns, thoughts, preoccupations, and life experiences that informed my arguments. In the present work, however, Sesha moves front and center, along with my personal voice, the voice that brought up the rear in the previous volume.
The ideas in Love’s Labor were bookended with the concepts of equality and dependency. By working through a dialectic between equality and dependency, I urged that if women were ever to share the world with men in true equality, we needed an equitable distribution of labor and a different, nonstigmatized relationship to inevitable human dependence. The persons caring for people with significant dependency needs were the focus (though not the exclusive focus) of that volume. In the current project, which spans two books (of which the current volume is the first), the emphasis is reversed: the place of those who are inevitably dependent because of lifelong significant disabilities is primary, although the roles of care and caregiving are not eclipsed. In this project, love and dignity are at the fore in the quest for a philosophy concerned with what matters.
Love and the specific relations we bear to others displace rationality and other elements of cognition as essential to a life lived with dignity.
Individualistic and rationalistic conceptions of the person are put to (and fail) the test of theoretical adequacy when they try to include those with serious cognitive disabilities. In Love’s Labor, I proposed that the only universal and morally significant property that all humans possess is that we are all some mother’s child. That is, we are born of two human parents, and to survive and thrive we require a nurturing person (or persons) to adopt our welfare as their own, at least minimally, through infancy and early childhood. A child with disabilities, who lacks intrinsic properties that philosophers have defined as essential to equal moral standing, is no less a mother’s child and no less entitled to become a member of our moral community than any other child. When we hold moral equality to reside in the relation that each human being has or has had to a mothering person that enabled the child’s survival, we recognize that care must be at the center of our morality and politics. It is through the care of a disabled child that I have had to turn around my own understanding of a good life and a just society.
I couch these new understandings as what I have learned from my daughter Sesha. These are offered up as arguments and as stories. Through them, I mean to convey the transformations of thought and self-understanding that have come out of encounters with my daughter, with her needs, her body, her mode of communication, and her relationship to me and the world.
What I have learned from my daughter has taken place in the context of my family, my students and colleagues, friends, caregivers, and institutions that have allowed me to pursue this work. My first and deepest thanks are then to my husband Jeffrey, my daughter Sesha, my son Leo, and my daughter-in-law Kim. Leo and Kim have allowed me to see parenting afresh; and Micah, Asa, and Ezra have enlarged Sesha’s world as she has enriched theirs. Seeing their relationship has allowed me to see, all over again, how many riches Sesha provides to our family. A close second are those caregivers who, with Sesha, have served as my teachers in the practice of care. The longest and deepest relation is with Margaret Grennan (Peggy), who came to help us when Sesha was five and stayed until Sesha left to live in the Center for Discovery at the age of thirty-two—twentyseven years of a remarkable friendship and project in co-mothering. I am fully aware that few are as privileged as I have been to find and be able to retain such a devoted, skillful, and persevering caregiver.
The good fortune in finding and keeping Peggy by Sesha’s side has been followed by another gift, the Center for Discovery in Harris, New York. In the Center for Discovery, we have found the essence of a caring community— a community, as the Center likes to say, inspired by the lives of people with disabilities, where people with even the most significant disabilities can live lives of fulfillment and dignity. Their work has deeply informed my own. The Center,
led by the genius of Patrick Dollard and sustained by the exceptional work of Dr. Theresa Hamlin, Richard Humleker, and so many others too numerous to name, has been Sesha’s home since 2001. We hope she will be able to live out her life there. At the Center, we have also found parents who share our own passion for their disabled children and with whom I have had the opportunity to share some of my work as well as the joy and hard moments, especially Denise and Art Thomson, Patty and Danny Abelson, and Karen and Eric London.
I must thank Suzie Nair, Dr. Philip Wilken, and Dr. George Todd from the Center, who helped us through some dark days of Sesha’s recent illnesses, as well as Dr. Orrin Devinsky, who finally (and we hope forever) conquered her seizures. I would be remiss not to mention some particular individuals who have assisted Sesha individually for over fifteen years: Maria Sorto and Julia Brosius. Learning from such talented and devoted caregivers never ceases.
But this book is nonetheless foremost a work of philosophy. Philosophy has been my intellectual home since I was in college, and as many times as I have run away from home, I have returned. Like a prodigal child, I had to reconcile myself to that home. Fortunately, I have had mentors and supports. I am deeply indebted to Edward Casey, as well as others in the Department of Philosophy at Stony Brook who supported my unorthodox work, especially Mary Rawlinson, Allegra de Laurentiis, Jeff Edwards, Gary Mar, Bob Crease, and Lee Miller. Stephen Post at the Center for Compassionate Care and Bioethics was always willing to take me in if I ever were to decide to finally reject philosophy—which I never did. Much of my willingness to remain in the field had to do with the amazing students I met and had the privilege to teach and mentor at Stony Brook. Many of them took an active part in my research by reading my manuscripts, assisting me with research, and engaging in dialogue on the topics discussed. Many have gone on to successful academic careers exploring their own passions in philosophy. So, many thanks to Barbara Andrews, Ellen Feder, Sarah Clark Miller, Serene Khader, Jean Keller, Bonnie Mann, Chris Kaposy, Danae McLeod, Michael Ross, Cara O’Connor, Katie Wolfe, Nathifa Greene, and, more recently, Phillip Nelson, Andrew Dobbyn, and others in my last seminar at Stony Brook where we combed through the book manuscript. A very special acknowledgment goes to Lori Gallegos de Castillo and Oli Stephano for their invaluable assistance doing research for and editing the manuscript itself, and to Alyssa Adamson who took on the daunting work of preparing the index.
Among those outside the department who have been influential in my pursuit of this project have been remarkable philosophers and disability scholars. Anita Silvers was an especially important interlocutor, and while we don’t always agree, we always learn from one another. Sarah Ruddick was a central inspiration for my work on care, and Bill Ruddick was an important discussant for issues of care and parenting. Two chapters, “The New Normal and a Good Life” and
“The Ethics of Prenatal Testing and Selection,” were occasioned by workshops at the Hastings Center for Bioethics, which both were spearheaded by Erik Parens. Adrienne Asch, who sadly is no longer with us, was a formidable interlocutor for discussions on prenatal testing. The extended workshop on prenatal testing was formative, as were the many discussions I had there and in the meeting on surgically shaping children with Bruce Jennings, Jamie Nelson, Hilde Lindemann Nelson, Bonnie Steinbock, and the rest of the participants at the Hastings Center. Benjamin Wilfond and Sara Goering invited me to a meeting concerning Ashley X and growth attenuation, thus spurring me on to writing what is now chapter 9. At various points in my thinking and writing I have also had help and inspiration from Martha Nussbaum, Michael Bérubé, Virginia Held, Michael Slote, Licia Carlson, Simo Vehmas, Owen Flanagan, Sophia Wong, Nicolas Delon, and John Vorhaus. I had the opportunity to discuss my ideas with Elizabeth Lloyd and Christia Mercer while we work-vacationed in White Lake, and with Nancy Vermes, wherever we were. Several read and commented on one or more chapters in earlier versions. Additionally, Adam Cureton, Lawrence Becker, and Tom Shakespeare read and commented on the entire manuscript. Richard Rubin read several chapters with care and offered helpful suggestions; Stephen Campbell provided massive and invaluable editorial commentary for chapter 5, and Dana Howard provided insights on an early version of the chapter; Gina Campella commented on an abbreviated version of chapter 8, and Vrinda Dalmiya carefully read and commented on a later version. Throughout, Susan Brison encouraged me when the writing faltered, offering the kind of support possible only from someone with whom one feels a deep intellectual and personal affinity.
Invitations to visit and participate in lecturing and teaching at other universities have variously informed many of the chapters. Among these, a thanks goes out to the faculty and students at the University of Newcastle (special thanks to Janice McLaughlin and Jackie Scully); University of Miami (thank you, Michael Slote); Stellenbosch University (thank you, Leslie Swartz); University of Waterloo (thank you, Carla Fehr); the University of Hawaii (special thanks to Vrinda Dalmiya); Emory University (gratitude to Rosemarie Garland-Thomson and Joel Reynolds); and the University of Malta (thank you especially to AnneMarie Callus, Maria Victoria Gauci, and the Fulbright Foundation). There were students and faculty at numerous institutions and meetings over a ten-year period at which I read parts or versions of chapters whose comments figured in the final transformation of these portions of the book.
Lucy Randall, my editor at Oxford, has offered important guidance and encouragement. My sincere thanks for this much-needed assistance.
Finally, I want to express my deep gratitude to the National Endowment for the Humanities and the Guggenheim Foundation for their generous fellowships. These allowed me to spend undiluted time focusing on the manuscript. The rewards of these fellowships are still only half-realized in the current volume. The rest remain as a promissory note for the volume to follow, Who’s Truly Human? Justice, Personhood, and Mental Disability.
On What Matters/Not
Philosopher Susan Brison (2010) has remarked that while she is not sure if an unexamined life is not worth living, she is sure that an unlived life is not worth examining. That is, it is the reality of lived lives that bears examination, not idealized lives. The reality of a disabled life and of a life with a disabled person is the life I hope to examine.
To do so, I must take the reader on an expedition into a scarcely traveled philosophical terrain. What I offer is both a story and an argument. The story begins with a fundamental life contradiction that comes in the form of a beloved baby. The argument is directed against the devaluation of human life lived with intellectual disability. The argument, together with the story, is about a fierce parental love for a vulnerable, dependent, and stigmatized child; a love that has moved this philosopher/mother to want to impart lessons I have learned to an uncomprehending world. Sarah Ruddick speaks of one of the demands of motherhood as the need to socialize one’s child so that the child can grow into an adult that is accepted by her community (1989). But when one has a child like my daughter, the demand is to socialize the community to accept her as an individual worthy of moral parity with all human beings. In these pages I track a journey: as a mother, a caregiver, and a philosopher.
1.1 The Story—The Beginning
A work of philosophy normally begins with the birth of an idea, but we begin instead with the birth of a child. It was two days before the Christmas of 1969 when this child—my child—was born. She emerged with a startled expression, a head full of black hair and a perfect little body. Her cry—a slow transition from the shock of birth to a full-throated protest—assured us that all was well. I was, as the title of the “natural birth” primer said, “awake and aware.” No drugs muffled the pain or the joy of childbirth. Without sedatives, we had a fully alert infant. She had a perfect Apgar score of ten. The elation was dampened only as my
LearningfromMyDaughter:TheValueandCareofDisabledMinds. Eva Feder Kittay, Oxford University Press (2019). © Eva Feder Kittay. DOI: 10.1093/oso/9780190844608.003.0001
baby was wheeled away and my husband was escorted out. I lay there surprisingly not tired, wanting only these two beloved persons by my side. I waited to be told I could visit my child in the nursery. And I waited for them to bring her back to my room as they were supposed to after a brief time. But I waited, waited, and waited. At long last she was brought to me, along with the news that she had experienced a cyanotic episode and the assurance that nonetheless all was well. I was to go home with her after three days.
We named her Sesha (properly spelled Cesia, the diminutive of the Polish name, “Czesława”) to honor a cousin of mine who, while only a young child, perished in the ovens of Treblinka. Our Sesha was our first child—and the first grandchild of two Holocaust survivors. Her birth marked the bright future even as it carried the heavy load of the past. When we learned of her disability, I was painfully aware that under the Nazi regime, disability was a death sentence for the child, and often for the mother as well—especially if they already belonged to a despised minority. It was not until I began writing about disability that I discovered the intimate connection between the fate of Jews in general and the fate of those with mental disabilities (Kittay 2016). But on that December day, looking out at a snow-covered New York City with my baby sweetly nursing, I knew nothing of what awaited us. We were lulled into thinking that her perfect form, bright gaze, and sweetness meant all was fine.
Sesha was serene but alert, and she melted in my arms. I didn’t know then that this lovely sensation was caused by her hypotonia, her lack of muscle tone. She slept for long periods of time, and as a new mother I didn’t know whether to feel lucky or worried. She was not a vigorous eater, but she was gaining weight. She did surprisingly few tricks—we waited for her to roll over, to pick up her head, and to meet the other milestones of early infancy. Today I realize that these should have been warning signs, but at the time I had only baby books, and I preferred to think that Sesha had her own timetable. When I queried my pediatrician about Sesha’s struggle to lift her head and turn it from side to side, he feigned ignorance, urging that the reason Sesha had not yet been able to lift her head was probably because she had a large head—a feature most likely inherited from my husband. Foolishly we accepted the explanation, even measuring my husband’s head to assure ourselves that this was the reason for Sesha’s inability at nearly four months of age to do what my son was later to manage in the first few days of his life. The pediatrician failed in his duty to be truthful; my husband and I allowed ourselves to be soothed by the deception. How desperately we new parents wanted our child to be normal.
Our bliss was disturbed when a college friend visited with her five-month-old baby. The baby was so much more active and capable than our beautiful, placid Sesha. On the advice of a friend who had quietly watched our daughter’s lack of progress with trepidation, we made our first visit to a pediatric neurologist.
He made us understand, as gently as possible, that there was cause for concern. However, he indicated that the most troubling possibility was a progressive deterioration, one that could only be detected by observing her for a period of time. This was hard enough to digest. On his suggestion, we consulted another pediatric neurologist in San Francisco while on holiday there. It was no holiday. A doctor with Hollywood looks greeted us, did a very brief exam, told us that our daughter was “severely to profoundly retarded,” then excused himself to see his next patient. It was brutal. Returning to our hotel room, nausea overtook me, but there was no way to expel this unwelcome news. From then on, we lived with the reality of her severe cognitive impairment. In Love’s Labor, where I first chronicled my life with Sesha and raised the first of the many questions this experience posed to my chosen métier, I wrote:
Sesha would never live a normal life. . . . the worst anticipation was that her handicap involved her intellectual faculties. We, her parents, were intellectuals. I was committed to a life of the mind. . . . This was the air I breathed. How was I to raise a daughter that would have no part of this? If my life took its meaning from thought, what kind of meaning would her life have? Yet throughout this time, it never even occurred to me to give Sesha up, to institutionalize her, to think of her in any other terms than my own beloved child. She was my daughter. I was her mother. That was fundamental. Her impairment in no way mitigated my love for her. If it had any impact on that love it was only to intensify it. . . . We didn’t yet realize how much she would teach us, but we already knew that we had learned something. That which we believed we valued, what we—I thought was at the center of humanity—the capacity for thought, for reason, was not it, not it at all. (1999)1
Two features of this brief recounting of the first few months of our life are worth remarking upon. The first was how desperately we clung to the idea that there was nothing the matter with our child. The second was my eventual realization that the child I loved, and whose life meant more to me than my own, could never share in the life of the mind. Though this realization was painful, the love of my child won loyalty over my love of the mind. Still, a philosopher (or rather a graduate student in philosophy) I remained. Philosophy served me well as an escape. The dissonances between what I knew from philosophy and what I experienced with Sesha were present from the start, but I was yet to confront these
1 Much of the rest of the tale is recounted in my essay “Not My Way, Sesha, Your Way, Slowly.” The narrative comprises the last two essays of Love’s Labor. I will recount bits and pieces of my life with Sesha as they pertain to the concerns of chapters that follow.
and acquire a new understanding of philosophy in light of my passionate love for my daughter. The amazing and wonderful outcome is that what I learned from my disabled daughter is what I had been searching for in philosophy: an understanding of things that matter.
1.1.1 Sesha
To do justice to Sesha, I first need to introduce her. But I have already done her an injustice. I have introduced her as my disabled daughter. She, however, like everyone else, is first someone with her own distinctive characteristics, an individual, a presence in this world that should be expressed in positive terms. I prefer to tell you about Sesha in terms that any mother wants to speak of her child— that is, with pride in the special and singular qualities that we cherish. Had I begun to speak of her as I would have preferred— telling you of her ability to light up a room with her smile, the warmth of her kisses, the fastness of her embrace, her boundless enjoyment of the sensuous feel of water, and perhaps most of all her abiding and profound appreciation of music— one might reasonably have asked: So why is Sesha not speaking for herself?
Sesha’s inability to speak (and so to speak for herself) is but a synecdoche for all that she is unable to do: feed herself, dress herself, toilet herself, walk, talk, read, write, draw, say Mama or Papa. When asked about my daughter, I want to tell people that she is a beautiful, loving, joyful woman. But then people ask me, “And what does she do? Does she have any children?” So, I soon have to tell them what she cannot be, given her profound cognitive limitations, her cerebral palsy, and her seizure disorders. When people ask how old my daughter is, I always hesitate, wondering whether to give her chronological age and speak of her as a lovely and intense forty-eight-year-old woman, or to speak of the indeterminate age that reflects her level of functioning and her total dependency. The positive set of responses is truer to who she is. Knowing her capabilities, one gets a glimpse into the richness of her life and the remarkable quality of her very being. Nonetheless, the limitations shape her life and the life of her family, so we all must address them if we are to realize her possibility of flourishing. At the same time, it is only by considering Sesha in the fullness of her joys and capacities that we can view her impairments in light of her life, her interests, her happiness— and not as projections of her “able” parents or of a society biased by what some have dubbed “ableism.”2
2 For the idea of “ableism” see Campbell (2009).
1.1.2 An Apologia: Speaking for Another
As I try to articulate through philosophy the understandings I gleaned of the things that matter from my relationship with a person with an intellectual disability, I will be speaking not only for myself, but also for my daughter. What I wish to impart are not my lessons, but hers. She cannot speak for herself. Yet speaking for another rather than allowing people to speak for themselves is problematic: to what extent do we truly understand what the other is telling us? To what extent are we being ventriloquists, using another’s visage to voice our own concerns? To what extent are we suppressing the other’s voice as we raise our own (Khader 2011a)? Speaking for people with disabilities is especially problematic since the agency of people with disabilities has long been suppressed. Disabled people have insisted on no longer being silenced, on having their voices heard. The mantra is simple: “Nothing about us without us.”
For most all people with significant mental disability, such a demand for voice appears futile. Although advocates of disability rights have argued that their impairments are disabling only in an environment that is hostile to their differences and that has been constructed to exclude them, some impairments (particularly those that affect our cognitive capacities) are not easily addressed by environmental changes and even social changes. Of all disabled people, those labeled “severely intellectually disabled”3 have least benefited from the inclusion fought for by a disability community that is dominated by people who are able to speak for themselves (Ferguson 1994).
Many with significant mental disability cannot ever hope to be independent or capable of participating in rational deliberation. Those who speak do so in a language not recognized—and even demeaned—by those who speak in the language of the public sphere. Without a claim to cognitive parity, even those who can speak are not recognized as authors or agents in their own right; that is, their voice is given no authority. Those who cannot speak must depend on others to speak for them. Perhaps there is no more disabling disablement.
To be heard, to be recognized, to have her needs and wants reckoned along with those of others, the mentally disabled individual requires an advocate—a role that has voice at its center. As the mother of a daughter, now an adult, who is disabled in this fashion, I speak as an advocate. Otherwise, my daughter and those who share her disability will be doubly disabled and silenced. So, I am left in the awkward position of speaking of an individual with a disability—needing to speak not only about her but, contra the disability dictum, for her, and to speak for and about her in a way that captures who she is and does her justice.
3 W hen Sesha first was diagnosed the term was “severe mental retardation.” The “R” word is now not acceptable.
1.2 The Story Meets the Argument: The Lived Life Matters
I was attracted to the field of philosophy because, having been born in the shadow of the Holocaust, I wanted to know if one could be a good person in an evil world. It was not the question I ever pursued, however, as a professional philosopher. But the ethical impulse never left me even as I avoided the field of ethics. And I returned to it in large measure because of my experience as a woman and as a mother.
But when I decided, after Sesha’s birth, to enter graduate school, it was not to resolve the ethical dilemmas I anticipated as the mother of a disabled child. Instead I entered graduate school to pursue a discipline rigorous enough to offer me a diversion from mothering. Adrienne Rich spoke about her poetry as a place where she was nobody’s mother (1995). I too needed to be someplace where I was no one’s mother, where hard intellectual work would distract me from the pain of my growing understanding of all that Sesha’s life could not be. I cordoned off these unwelcome thoughts by pursuing philosophy of language, philosophy of science, and the most demanding philosophical work at hand. Yet as I pursued the study of the philosophy of language, explored the puzzles that metaphors posed to semantic theory, and worked to help develop a nascent feminist ethics and political philosophy, the experience of parenting my daughter hovered about me like Socrates’s gadfly.
How can one repeatedly read and teach texts that give Reason pride of place in the pantheon of human capabilities, when each day I interacted with a wonderful human being who displayed no indisputable evidence of rational capacity? How can one view language as the very mark of humanity, when this same daughter can speak not a word? How can one read about justice as the consequence of reciprocal contractual agreements, when one’s own child is unable and will apparently never be able to participate in reciprocal contractual agreements? My daughter gave the lie to most of my professed philosophical beliefs. Were they merely dogmas I accepted? Could they be made compatible with the lived reality of existence with a beloved person such as my daughter? These questions lay fallow in my mind; I placed them on a back shelf there labeled “FUTURE PHILOSOPHICAL PROJECT: SESHA.” The dissonance might change my relationship to philosophy. It could not, however, change my relationship to my daughter. That was my fixed point of reference.
Mothers, with few exceptions, do want an open future for their child; they want their children to have good health and to thrive. Under the long shadow of “mental retardation”—to use the term that was long used to describe her situation—this appeared to be an impossibility.
