APA Committees

"JUSTICE, EQUALITY, AND THE CHALLENGE OF DISABILITY"

NEH Summer Seminar, 2002

NEH SEMINAR, 2002

"JUSTICE, EQUALITY, AND THE CHALLENGE OF DISABILITY"
co-directors: Eva Feder Kittay and Anita Silvers

SYLLABUS

The seminar will last for five weeks and will address five related sets of philosophical questions important to understanding, assessing the adequacy of, and reforming or rejecting, traditional approaches to justice. These questions relate to (1)conceptions of normality and disability, (2)equality and disability rights, (3)well-being and the quality of life, (4)virtue theory and the ethics of care, and (5)the intersectionality of roles and relationships constitutive of identity. (Articles in the syllabus are linked to allow reading/printing prior to the seminar. Some are in HTML format and will print directly from a web browser. Others are in PDF format, which requires Adobe Acrobat Reader and can be downloaded for free here.)
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OPENING EVENTS

Orientation:
Sunday, June 23rd, 4:30 p.m. - Westlands 104

Opening Barbecue:
Sunday, June 23rd, 5:30 p.m. - Rothschild Barbecue Pit

Week I: CONCEIVING DISABILITY
Morning Seminar: Monday, (June 24) 10:30-12, Lunch 12-1:30, 1:30-3:00
Tuesday, Wednesday (June 25-June 26) 10:00-1:00 with Lunch Break 1-2:30.

Afternoon Participants' Presentations:
Monday (June 24) 3:30-5:30 (Marilyn Martone and Sophia Wong)
Tuesday (June 25) 2:30-4:30 (Christian Perring)

We will examine both the strengths and the weaknesses of the medical and social models of disability. To help assess the models, we will read some personal accounts of disability, as well as some historical and cross cultural accounts. We will consider issues raised by different kinds of impairments.. These sources will help us consider some of the injustices to which people are subjected in virtue of being disabled. They will suggest the great variations among disabled people, as well as their similarities, and introduce consideration of the subjectivity and agency of disabled people. And these readings will help all of us clarify and engage with our own presuppositions about disability.

Reading on Defining Disability:
1. Ron Amundson. "Biological Normality and the ADA" in Francis and Silvers, Americans With Disabilities: Implications of the Law for Individuals and Institutions.
2. Richard Cohen, "My Body, My Prison, My Dreams", New York Times, May 28, 2002. (Also available at http://www.nytimes.com/2002/05/28/health/28CASE.html) (HTML File)
3. Jenny Morris - "Impairment and Disability: Constructing an Ethics of Care That Promotes Human Rights," in Hypatia, v. 16, n. 4, pp. 1-16.
4. Anita Silvers, David Wasserman, and Mary Mahowald - Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy, sections on the medical and social models of disability
5. Susan Wendell - The Rejected Body: Feminist Philosophical Reflections on Disability, sections on the medical and social models of disability
6. Susan Wendell - "Unhealthy Disabled: Treating Chronic Illness as Disability", Hypatia, v. 16, n. 4, pp. 17-33. (HTML File)

Supplementary Reading on Defining Disability:
(This is an old book, but some people find it useful.)
Erving Goffman - Stigma

Reading on Living with a Disability:
(Please read as much of these books as you find useful. Many of you already are familiar with them.)

1. Ann Fadiman - The Spirit Catches You and You Fall Down
2. Nora Groce - Everyone Here Spoke Sign Language: Hereditary Deafness on Martha's Vineyard
3. Either Marsha Saxton's collection of writings by women with disabilities called With Wings: An Anthology of Literature By and About Women With Disabilities or Lois Keith's collection of writings by women with disabilities called "What Happened To You?": Writing By Disabled Women.

Supplementary Reading on Living With a Disability:
(You may find these books interesting as well. The first two are narratives, the third an exchange of letters between a blind and a sighted philosopher, the fourth a history.)

John Bayley - Elegy for Iris: A Memoir
Jason Kingsley & Mitchell Levitz - Count Us In: Growing Up With Down Syndrome
Brian Magee and Martin Milligan- On Blindness
James Trent - Inventing the Feeble Mind

Reading on Living with Disability - Caregiver's Perspective
1. Michael Berube - Life As We Know It: A Father, A Family, and an Exceptional Child
2. Marion Cohen - Dirty Details: The Days and Nights of a Well Spouse
3. Eva Kittay - Love's Labor: Essays on Women, Equality and Dependency, Chapters 6 & 7.

Supplementary Reading on Living with Disability - Caregiver's Perspective
Eva Kittay - "At Home with My Daughter: Reflections on Olmstead v. L.C", in Francis and Silvers, Americans with Disabilities
Carol Levine - "Loneliness of the Long-Term Caregiver" in Carol Levine (ed.), Always on Call: When Illness Turns Families into Caregivers. (PDF File)

Week II: JUSTICE, EQUALITY, and RIGHTS
Morning Seminar: Monday, (July 1) 10:30am-2:30pm with Lunch Break 12-1.
Tuesday, and Wednesday, (July 1,July 3) 9:30am-1:00pm, Lunch 1pm-2:30 pm with 20 min. breaks)

Afternoon Participants' Presentations:
Monday (July 1), 3:00pm-4:10pm: Sharonna Hoffman
Tuesday (July 2), 2:00pm-4:30pm: Eddy Souffrant and Anita Ho with 20 min. break

After a review of the views characteristic of traditional justice theory, we will turn to its applications to disabled people. In particular, we will look at the issues raised by anomalous, or extraordinarily limited , functioning and by dependency. We will consider attempts to make justice theory more inclusive by developing ideas about equality of opportunity, equality of outcomes, equality of capabilities, and participatory and distributive rights.

Reading on Justice, Equality, and Rights
The baseline reading for this week is the article we have already asked you to look at as preliminary reading (many of you already are familiar with it):
John Rawls - "Justice as Fairness: Political Not Metaphysical", Philosophy and Public Affairs 14 (1985): 223-51. (PDF file)
Also Read:
1. Elizabeth Anderson - "What Is the Point of Equality" in Ethics, 109 (1999). 287-337 (PDF File)
2. Richard Arneson -"Disability, Priority, and Social Justice" in Francis and Silvers, Americans with Disabilities
3. Lawrence Becker - "The Good of Agency" in Francis and Silvers, Americans with Disabilities
4. Leslie Francis and Anita Silvers, "Introduction" to Americans with Disabilities.
5. Eva Kittay - "When Care is Just and Justice is Caring: The Case of the Care for the Mentally Retarded" in Public Culture, 13(3), 557-579 (This reading is also important for Week IV). Also see Chapter 3&4 in Love's Labor. (PDF File. Article will appear horizontal for printing; choose "Rotate View 90° CW" under the "View" menu to read article.)
6. Amartya Sen - "Equality of What?" in McMurrin, S. (ed.), Tanner Lectures on Human Values.
7. Anita Silvers - Disability, Difference, Discrimination (from the section titled "Political Disadvantage" through the end of the essay on Formal Justice)
8. Anita Silvers - "The Rights of People with Disabilities" (from The Oxford Handbook of Practical Ethics, edited by Hugh LaFollette - this is not yet published. We will email everyone the typescript.) (HTML File)
9. Jonathan Wolff - "Disability in a Society of Equals" (Jo Wolff is a leading political philosopher who is Professor at University College, London. This is a draft of a forthcoming article. We will email everyone the typescript. You might want to read this article quite early, or even read it in preparation for Week I, because it reviews the differences implied by the medical and social models of disability for theories of justice.)

Supplementary Reading on Justice, Equality, and Rights:
Patricia Illingworth and Wendy Parmet - ""Positively Disabled: The Relationship Between the Definition of Disability and Rights Under the ADA" in Francis and Silvers, Americans with Disabilities
Martha Minow - Making All the Difference: Inclusion, Exclusion and American Law (This reading is also important for Week V)
Iris Marion Young, - Justice and the Politics of Difference
Americans With Disabilities Act, full text can be found at http://www.usdoj.gov/crt/ada/pubs/ada.txt

United Nations - Standard Rules on the Equalization of Opportunities for Persons with Disabilities - full text can be found at:
http://www.un.org/ecosocdev/geninfo/dpi1647e.htm or gopher://gopher.un.org/00/sec/dpcsd/dspd/disabled/ar48-96.en

For a list of, and links to, disability rights law in many countries, go to http://www.dredf.org/symposium/lawindex.html

Links to Court Decisions

Week III: VIRTUE THEORY AND THE ETHICS OF CARE
Morning Seminar: Monday, (July 8), 10:30am-2:30pm with Lunch Break 12:00-1:00pm.
Tuesday, and Wednesday (July 9-10), 9:30am-1:00pm, Lunch 1:00pm-2:00pm.

Afternoon Participants' Presentations:
Monday (July 8), 2:50pm-4:00pm: Ann Hubbard
Tuesday (July 9), 2:00pm-4:30pm: Jackie Scully and Rosemary Quigley
Wednesday (July 10) 2:00pm-4:30pm: Shearon Smith and Vrinda Dalmiya

We will consider virtue ethics and the ethics of care not as occupying territory different from justice's, but as remedying the flaws and expanding beyond the limitations of traditional justice theory. How might justice be transformed if we center it on situations of dependency, both of dependents and of dependency workers? What place does the acknowledgement of vulnerability have in moral and political philosophy, and what contributions do trustworthiness and caring make to personal and community flourishing?

Core Reading:
1.Eva Kittay, Love's Labor - Chapters 2, 3, 4.
2.Alasdair MacIntyre, Dependent Rational Animals - Chapters 1, 7, 9-11.
3.Alasdair MacIntyre, "The Need for a Standard of Care" in Francis and Silvers, ADA
4.Robin West, "The Right to Care" in Kittay and Feder, The Subject of Care
5.Frankfurt, Harry, "Autonomy, Necessity and Love" in Hans Friedrich Fulda and Rolf-Peter Horstmann, Vernunbegriffe in der Modern, Klett-Cotta, 1993.

Supplementary Reading:
1. Carol Gilligan, "Moral Orientation and Moral Development" in Virgina Held, Justice and Care
2. Annette Baier, "The Need for More than Justice" in Virgina Held, Justice and Care
3. Sarah Ruddick, "Injustice in Families: Assault and Domination" in Virgina Held, Justice and Care

Thursday (July 12)-The Center for Discovery
We will end this week with a visit to the Center for Discovery in Harris, New York, (Sullivan County) where we will consider quality of life issues for people with mental retardation and multiple disabilities.
We'll carpool to Sullivan County for a visit to the Discovery Center in Sullivan County and follow-up Seminar and Lunch at Eva's house in White Lake, New York.

Participants' presentation: Els Maeckelberghe.
Additional Specifics to be announced.

Week IV: JUSTICE, WELL-BEING, AND QUALITY OF LIFE
Morning Seminar: Monday (July 15) 10:30am-2:30pm, with Lunch Break 12-1.
Tuesday, Wednesday (July 16-17) 9:30am-1:00pm, Lunch Break 1-2:00.
Wednesday Morning Guest lecturer: Carolyn Lieber
Tuesday Afternoon Lecture by Guest Speaker Frances Kamm: July 16 Time to be announced.
Reception following Lecture

Afternoon Participants' Presentations:
Monday (July 15) 3:00pm-5:30pm, Ruth Purtillo and John Wright
Wednesday (July 17) 2:00pm-4:30pm, Ani Satz and Deborah Diniz

How do we weigh other distributive objectives, such as relieving poverty and enhancing education for all, against securing distributive justice for people with disabilities? During this week we will examine schemes that weigh the value of allocating medical benefits and other services to people in virtue of their being disabled, considering these in the context of broader philosophical accounts. The allocation of resources sometimes is weighed with reference to recipients' quality of life. There is much debate about basing the allocation of resources to disabled people on standard conceptions of the quality of life.

Core Reading on Quality of Life Measures and Health Care Rationing:
1. Dan Brock et al, "Quality of Life Measures in Health Care and Medical Ethics" in M. Nussbaum and A. Sen, The Quality of Life.
2. Christopher Murray, The Global Burden of Disease, excerpts.
3. Erik Nord, Cost-Value Analysis in Health Care: Making Sense out of QALY's, Chapters 3, 4, and 6.
4. Frances Kamm "Disability, Discrimination, and Irrelevant Goods" Rich Text Format (Word Document)
5. Nora Groce, Mary Chamie, and Angela Me, "Measuring the Quality of Life: Rethinking the World Bank's Disability Adjusted Life Years" International Rehabilitation Review, June 99, Vol. 49 Off-site Link

Supplementary Reading on Quality of Life Measures and Health Care Rationing:
1. Norman Daniels, "Is the Oregon Rationing Plan Fair?" from Arras & Steinbock, Ethical Issues in Modern Medicine, pp. 633-39.
2. Dan Brock, "Health Care Resource Prioritization and Discrimination Against Persons With Disabilities" PDF File
3. Thomas Scanlon, "Value, Desire, and the Quality of Life" and commentary by Sissela Bok in Martha Nussbaum and Amartya Sen eds. The Quality of Life (Oxford: OUP, 1993). PDF File
4. Eric Nord, "Values For Health States In Qalys And Dalys: Desirability Versus Well-Being And Worth." Word Document (This is a forthcoming paper.)

Core Reading On Genetic Testing, Selective Abortion and Disabled Infants:
1. Adrienne Asch, "Can Aborting 'Imperfect' Children Be Immoral?" or "Prenatal diagnosis and selective abortion: a challenge to practice and policy"
2. Buchanan, Brock, Daniels and Wilker, From Chance to Choice, Chapter 7
3. Erik Parens and Adrienne Asch, Prenatal Testing and Disability Rights, selected essays
4. Peter Singer, Adrienne Asch, Eva Kittay, and Anita Silvers, Panel Discussion on Letting Disabled Neonates Die (published in The Newsletter of the American Philosophical Association).
5. Hilde and James Nelson, "Review of From Chance to Choice" American Journal of Bioethics 1, no. 2 (spring 2001)
6. Rayna Rapp, "Women's Responses to Prenatal Diagnosis," from Women and Prenatal Testing; or "The Ethics of Choice," from Ms.

Supplementary Reading on On Genetic Testing, Selective Abortion and Disabled Infants:
1. Laura Purdy, Review of Parens and Asch, Prenatal Testing and Disability Rights
2. Philip Kitcher, The Lives to Come
3. Hans Reinders, The Future of the Disabled in a Liberal Society, excerpts
4. Allen Buchanan "Choosing Who Will Be Disabled: Genetic Intervention and the Morality of Inclusion" in Social Philosophy and Policy 13/2 (1996). On Reserve
5. Erik Parens and Adrienne Asch, "The Disability Rights Critique of Prenatal Testing" in Asch and Parens
6. Helso Kuhse and Peter Singer, Should the Baby Live? The Problem of Handicapped Infants (excerpts)
7. Sophia Wong, "At Home with Down Syndrome and Gender" in Hypatia vol. 17.
8. Dave Hingsburger, First Contact: Charting Inner Space: Thoughts about establishing contact with people who have significant developmental disabilities.

WEEK V: INTERSECTIONALITY AND IDENTITY
Morning Seminar: Monday, (July 22), 10:30am-2:30pm with Lunch Break 12:00-1:00pm.
Tuesday, Wednesday, Friday (July 23-24, 26), 9:30am-1:00pm, Lunch 1:00pm-2:00pm.

Afternoon Participants' Presentations:
Monday (July 22) 3:00pm-5:00pm, Marion Secundy and Martha Satz
Tuesday (July 23) 2:30pm-3:30pm, Anna Stubblefield

Here we will take up questions of distinctions of race, gender and sexuality, class, and age. Is the logic of the disability classification similar to or different from these other important social categories? If so, what are the implications for legal theory and public policy? To what extent does assignment to the disability category occlude differences of and affinities to race, gender/sexuality, age and class? How do these intersecting identities influence access to resources and opportunities for social participation, as well disabled people's experiences of self esteem and self-respect?

Core Reading:
1.Martha Minow, Making All the Difference: Inclusion, Exclusion and American Law, Chapters 1 & 4.
2.Michael Ashley Stein and Anita Silvers, "Race, Gender, and Disability: Standing at the Crossroads of Retrogressive and Progressive Logic in Constitutional Classification"
3.Anita Silvers, "Aging Fairly,: Feminist and Disability Perspectives on Intergenerational Justice"
4. In Lois Keith, What Happened to You? Writings by Disabled Women: Nasa Begum, "Snow White," Gohar Kordi, "I was Touched," Millee Hill, "Patricia's Mother"
5. Nora Ellen Groce and Irving Kenneth Zola, "Multiculturalism, Chronic Illness, and Disability," from Pediatrics.
6.Ayesha Vernon, "A Stranger in Many Camps" in Jenny Morris, Encounters with Disability
7. Kwame Anthony Appiah "Liberalism, Individualism, and Identity" PDF File

Supplementary Reading
1.Susan Wendell, The Rejected Body (excerpts) See Megan for extra copy
2.Charles Taylor, "The Politics of Recognition" in Amy Gutman (ed), Multiculturalism. (On Reserve)
3.Kwame Anthony Appiah and Amy Gutmann, Color Conscious: The Political Morality of Race (excerpts) (On Reserve)
4.Audre Lorde, Cancer Journals excerpts (On Reserve)

A seminar session on Friday morning will be devoted to planning follow-up activities. We will develop plans for furthering the work of the seminar and supporting the projects of all the participants

There will be a formal farewell dinner on the evening of Friday, July 26.