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Learning from My Daughter
Learning from My
Daughter
The Value and Care of Disabled Minds

E VA F E D E R K I T TAY

1
 1
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Excerpts from the song “My Funny Valentine” appear in this work’s preface.

MY FUNNY VALENTINE (from “Babes in Arms”)

Words by LORENZ HART
Music by RICHARD RODGERS
Copyright © 1937 (Renewed) CHAPPELL & CO., INC.
All Rights for the Extended Renewal Term in the U.S. Controlled by WB MUSIC CORP. and
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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. |
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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 intro-
duce 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

xi
xii Foreword

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 in-
credulous 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 per-
manently 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 pur-
pose 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.

This quote is attributed to Georgia O’Keeffe and dated 1939 in O’Keeffe: Georgia O’Keeffe
1

Retrospective Exhibition and Catalogue, edited by Lloyd Goodrich and Doris Bry (New York: Whitney
Museum of American Art, 1970), 17.
 Foreword xiii

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 re-
ally 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 second-​
hand, 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 pre-
vious 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 uni-
verse. 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.
xiv Foreword

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 cogni-
tively 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 at-
tainment 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.

Quoted in Eva Feder Kittay and Licia Carlson, eds., Cognitive Disability and Its Challenge to
3

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.
 Foreword xv

“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 exam-
ination 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 “philosophi-
cally,” 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 philos-
ophy 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 sev-
eral 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 ag-
onizing. 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
xvi Foreword

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 some-
thing 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
 Foreword xvii

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 friend-
ship possible. To be sure, music helped me come to appreciate Sesha’s full hu-
manity, 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 im-
perative 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.
 P R E FA C E A N D A C K N O W L E D G M E N TS

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 re-
flection. 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 artic-
ulated 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 in-
formed 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 rela-
tionship 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 inevi-
tably dependent because of lifelong significant disabilities is primary, although
the roles of care and caregiving are not eclipsed. In this project, love and dig-
nity are at the fore in the quest for a philosophy concerned with what matters.

xix
xx Preface and Acknowledgments

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 cog-
nitive 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 com-
munication, 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—​twenty-​
seven 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,
 Preface and Acknowledgments xxi

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 pur-
suit 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
xxii Preface and Acknowledgments

“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 sur-
gically 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 con-
cerning 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 c­ hapter 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 sup-
port 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 Anne-
Marie 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 en-
couragement. My sincere thanks for this much-​needed assistance.
 Preface and Acknowledgments xxiii

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.
 1

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 phil-
osophical 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 intel-
lectual 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 uncom-
prehending 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 muf-
fled the pain or the joy of childbirth. Without sedatives, we had a fully alert in-
fant. She had a perfect Apgar score of ten. The elation was dampened only as my
Learning from My Daughter: The Value and Care of Disabled Minds. Eva Feder Kittay,
Oxford University Press (2019). © Eva Feder Kittay. DOI: 10.1093/oso/9780190844608.003.0001
4 Learning to Become a Humbler Philosopher

baby was wheeled away and my husband was escorted out. I lay there surpris-
ingly 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 dis-
covered 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 pe-
diatrician 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.
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