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

by Eva Feder Kittay

Does life have meaning? What is flourishing? How do we attain the good life? Philosophers, and many others of us, have explored these questions for centuries. As Eva Feder Kittay points out, however, there is a flaw in the essential premise of these they seem oblivious to the very nature of the ways in which humans live, omitting a world of co-dependency, and of the fact that we live in and through our bodies, whether they are fully abled or disabled. Our dependent, vulnerable, messy, changeable, and embodied experience colors everything about our lives both on the surface and when it comes to deeper concepts, but we tend to leave aside the body for the mind when it comes to philosophical matters. Disability offers a powerful challenge to long-held philosophical views about the nature of the good life, what provides meaning in our lives, and the centrality of reason, as well as questions of justice, dignity, and personhood. These concepts need not be distant and
idealized; the answers are right before us, in the way humans interact with one another, care for one another, and need one another--whether they possess full mental capacities or have cognitive limitations. We need to revise our concepts of things like dignity and personhood in light of this important correction, Kittay argues.

This is the first of two books in which Kittay will grapple with just how we need to revisit core philosophical ideas in light of disabled people's experience and way of being in the world. Kittay, an award-winning philosopher who is also the mother to a multiply-disabled daughter, interweaves the personal voice with the philosophical as a critical method of philosophical investigation. Here, she addresses why cognitive disability can reorient us to what truly matters, and questions the centrality of normalcy as part of a good life. With profound sensitivity and insight, Kittay examines other difficult How can we look at the ethical questions regarding prenatal testing in light of a new appreciation of the personhood of disabled people? What do new possibilities in genetic testing imply for understanding disability, the family, and bioethics? How can we reconsider the importance of care, and how does it work best? In the process of pursuing these questions, Kittay articulates
an ethic of care, which is the ethical theory most useful for claiming full rights for disabled people and providing the opportunities for everyone to live joyful and fulfilling lives. She applies the lessons of care to the controversial alteration of severely cognitively disabled children known as the Ashley Treatment, whereby a child's growth is halted with extensive estrogen treatment and related bodily interventions are justified.

This book both imparts lessons that advocate on behalf of those with significant disabilities, and constructs a moral theory grounded on our ability to give, receive, and share care and love. Above all, it aims to adjust social attitudes and misconceptions about life with disability.

Genres: Philosophy, Nonfiction, Disability Studies

304 pages, Hardcover

First published April 1, 2019

About the author

Eva Feder Kittay is Distinguished Professor of Philosophy at Stony Brook University/SUNY; a Senior Fellow of the Stony Brook Center for Medical Humanities, Compassionate Care and Bioethics, and an Affiliate of the Women's Studies Program. She is the recipient of a Guggenheim Fellowship, an NEH Fellowship, and the APA and Phi Beta Kappa Lebowitz Prize. She has also been recognized for her work in Feminist Philosophy, being named Women Philosopher of the Year (2003-2004) by the Society for Women in Philosophy and having chaired the Committee on the Status of Women (1997-2001). Her book Love's Labor: Essays on Women, Equality, and Dependency (Routledge, 1999) has received international attention and has been translated into Japanese and Italian. Her other work includes Cognitive Disability and the Challenge to Moral Philosophy (Blackwell, 2010), Blackwell Guide to Feminist Philosophy (Blackwell, 2007), Theoretical Perspectives on Dependency and Women (Rowan and Littlefield, 2003), Metaphor: Its Cognitive Force and Linguistic Structure (Clarendon Press, Oxford University Press, 1987, 1985), an edited collection Frames, Fields and Contrasts (Erlbaum, 1992), and Women and Moral Theory (Rowan and Littlefield, 1985). She has edited many journal issues in feminist philosophy and the philosophy of disability and has published over 85 articles and book chapters.

She chairs and was a founder of Philosophy in an Inclusive Key Summer Institute, a summer program for undergraduates who are from groups underrepresented in philosophy.

She has taught graduate and undergraduate courses in philosophy and has directed many dissertations in feminist philosophy, feminist ethics, social and political theory, metaphor, and disability studies.

Reviews

[A YOGAM · Rating 4 out of 5]

In diesem tief berührenden Werk verwebt Eva Feder Kittay ihre Erfahrung als Mutter einer Tochter mit mehrfachen Behinderungen mit einer radikalen Kritik der klassischen Philosophie. Sie hinterfragt die Überordnung von Rationalität als Maßstab für Würde und Personsein. Kittay argumentiert, dass ein „gutes Leben“ nicht an kognitiven Fähigkeiten hängt, sondern in der radikalen Akzeptanz unserer gegenseitigen Abhängigkeit und Verletzlichkeit wurzelt. Das Buch fordert eine Neudefinition von Gerechtigkeit, die Sorge (Care) nicht als Last, sondern als fundamentale menschliche Qualität begreift, und analysiert ethische Grenzfälle wie Pränataldiagnostik oder das umstrittene „Ashley Treatment“ aus dieser neuen, bewusst relationalen Perspektive.

Thematische Schwerpunkte
Kittay nutzt das Persönliche als philosophische Methode, um tradierte Normen zu sprengen – Biografie wird hier zur normativen Ressource:
Die Grenzen der Wahl (Teil II): In den Kapiteln 3 bis 5 setzt sie sich kritisch mit Selektion und Pränataldiagnostik auseinander. Sie warnt davor, das Leben behinderter Menschen allein durch das Prisma des Leids zu betrachten, und fordert eine Ethik, die den Wert des Lebens jenseits von „Normalität“ affirmativ verteidigt.
Die Normativität der Sorge (Teil III): Besonders in Kapitel 9 („Forever Small“) analysiert sie den Fall Ashley X – ein Kind, dessen Wachstum medizinisch gestoppt wurde. Kittay nutzt diesen Fall, um zu zeigen, wie eine Ethik der Sorge die körperliche Integrität gegen bloße Nützlichkeitserwägungen entschieden in Stellung bringen muss.

Intertextuelle Verankerung im Bibliotheksbestand
Dieses Werk ist der emotionale und theoretische Schlussstein meiner Sammlung zur Care Ethics – ihr existenzieller Prüfstein:
Erweiterung der Sorge-Ethik: Während der Sammelband von Walker & Tomasi (The Ethics of Care) die multidisziplinäre Strategie liefert, gibt Kittay dieser Theorie ein Gesicht und eine Stimme. Sie konkretisiert die „relationale Autonomie“, indem sie zeigt, dass Würde kein innerer Besitz des Einzelnen ist, sondern im Geflecht tragender Beziehungen emergiert.
Kritik der Dehumanisierung: Kittays Analyse der Person (Teil I) ist die notwendige Ergänzung zu Mari Mikkolas The Wrong of Injustice. Mikkola beschreibt das Unrecht der Entmenschlichung; Kittay zeigt positiv auf, wie Dehumanisierung überwunden werden kann – indem wir die „Zentralität der Vernunft“ relativieren und den Menschen in seiner abhängigen, verletzlichen und leiblichen Existenz anerkennen. Hier zeigt sich ein deutlicher Bezug zur Theories in the Flesh (José Medina et al.), da auch dort das verkörperte Selbst zum normativen Ausgangspunkt wird.

[Gabriel Rojas Hruška · Rating 3 out of 5]

While deeply important and insightful, there is a disturbing amount of misrepresentation of other theories (most especially contemporary social liberal discourse, legal rights, and Rawlsian theory), a support for and failure to understand a negative eugenic perspective while criticizing other eugenic perspectives. All-in-all a complex and worthwhile read but with some serious failings - not all arguments are convincing, and some are just problematic.

[Amaavi Miriyagalla · Rating 4 out of 5]

a beautiful, philosophical reflection on mothering a disabled child