Dependency, difference and the global ethic of longterm care

Journal of Political Philosophy

Volumn 13, Issue 4, 2005, Pages 443-469

  Kittay, Eva Feder ^a   Jennings, Bruce ^b   Wasunna, Angela A ^b  

^a STONY BROOK UNIVERSITY   (United States)

^b HASTINGS CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 29144483516     PISSN: 09638016     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1467-9760.2005.00232.x     Document Type: Review

References (75)

1. The Swedish cooperative of cognitively impaired persons, JAG, utilizes two sorts of caregivers for their members: the "personal assistants" who provide the hands-on care, and the "service guarantors." Service guarantors are chosen by the member to oversee the quality of care provided by the personal assistant and to express problems that the member herself cannot. They know the client very well, and help to extend the agency of people whose disabilities limit their capacity for agency. But if necessary, the service guarantor will step into the role of personal assistant for theirs is the ultimate responsibility for the care of the JAG member. Sometimes the service guarantor is also the member's personal assistant. Both roles are compensated, even when either is occupied by a family member. For more information, see JAG, The JAG Association (Stockholm, Sweden: 2004). I believe that employed mothers, and less often fathers, play an analogous role for their children, just as a son or daughter with an ailing parent will do for his or her parent even when they hire paid workers to do daily hands-on care, and even though they receive no remuneration for this work. I would maintain that both services are forms of dependency work/care. However, a parent who sees their sole responsibility to be income-earner (and will not, or has no clue of how to step in when a caregiver does not show up) can hardly be said to be a caregiver, although he does serve as a provider and support for the caregiver.
2. In the US today, professional care now accounts for twenty per cent of the total paid labor force, according to Nancy Folbre, The Invisible Heart (New York: New Press, 2001), p. 55.
3. An early statement of this point is found in Robert Paul Wolff, "There's nobody here but us persons," Women & Philosophy, ed. Carol C. Gould and Marx W. Wartofsky (New York: Putnam, 1980), pp. 128-44. The point has been repeated and elaborated in the work of philosophers who work in the "ethics of care."
4. See for example: Annette C. Baier, "The need for more than justice," Justice and Care, ed. Virginia Held (Boulder, Colo.: Westview Press, 1995), pp. 47-58;
5. Seyla Benhabib, "The generalized and the concrete other." Women and Moral Theory, ed. Eva F. Kittay and Diane T. Meyers (Totowa, N.J.: Rowman and Littlefield, 1987), pp. 154-77;
6. and Virginia Held, "Non-contractual society: a feminist view," Canadian Journal of Philosophy, Supplementary vol. 13 (1987), 111-35.
7. See for example, Iris Marion Young, Inclusion & Democracy (Oxford: Oxford University Press, 2000).
8. See "Current and future long-term care needs: an analysis based on the 1990 WHO Study the Global Burden of Disease and the International Classification of Functioning, Disability and Health," (Geneva: World Health Organization and The Cross-Cluster Initiative on Long-Term Care, 2002), p. 19. Available at http://www.who.int/chronic_conditions/en/ltc_needs.pdf.
9. In the study cited in the previous note, the only group in which the projected increase is only very slight is Sub-Saharan Africa, which is projected to have large increases in its population that are offset in large increases in its dependent population.
10. Relevant demographics in the United States chronicle the changes in age distribution from 1980 to 2000. While in 1980 the single largest population segment was between ages 20-30, in 1990 it moved to between 35-45, and in 2000 it shifted upward to between 40-50. During that same period, the number of people 80 years old doubled. It is evident that the aging of the US population will result in increasing problems with longterm care for the elderly. The situation is better in the Scandinavian countries, but not much better in the UK, France, and Germany. Outside of Western Europe, Australia, New Zealand and North America, little public infrastructure exists for long-term care and the caregiving system is almost entirely comprised of the family and kinship networks. See Roy Amara et al., Looking Ahead at American Health Care (McGraw Hill Health Professions: 1988).
11. I am indebted to discussions with Rosemary Quigley and Anita Silvers for the notion of a self-carer - that is a person whose disabilities require care that, under the right circumstance and with the right support, one is able to administer to oneself. These forms of caregiving include the self-injection of medications, self-monitoring of fragile health conditions, dealing with crucial adaptive equipment maintenance and repair, etc. It also includes engaging in the activities of daily living with the assistance of adaptive devices - without which the person would be dependent on another for care.
12. Barbara Ehrenreich and Arlie Russell Hochchild, ed., Global Women: Nannies, Maid and Sex Workers in the New Economy (New York: Holt, 2002).
13. The World Health Organization has been active in generating studies that are a good start for future work. See the following studies: "Current and future long-term care needs"; J. Habib, J. Brodsky, M. Hirschfeld, eds, Key Policy Issues in Long-Term Care (Geneva: WHO and The Cross-Cluster Initiative on Long-Term Care, The WHO Collaborating Center for Research on Health of the Elderly JDC-Brookdale Institute, 2003) available at http://www.who.int/ chronic_conditions/en/Policy_Issues.pdf;
14. WHO, Ethical Choices in Long-Term Care: What Does Justice Require (Geneva: World Health Organization, 2002) available at http://www.who.int/ chronic_conditions/en/ethical_choices.pdf;
15. and The Cross-Cluster Initiative on Long-Term Care WHO, Lessons for Long-Term Care Policy, (Noncommunicable Diseases and Mental Health Cluster, World Health Organization, The WHO Collaborating Centre for Research on the Health of the Elderly, JDC-Brookdale Institute, 2002) available at http://www.who.int/chronic_conditions/en/ltc_policy_lessons.pdf.
16. In the last 50 years, a powerful language of human rights has evolved in the international community. Given the importance of caregiving experience in the lives of all individuals, particularly the experience of women in the family and domestic setting, it is interesting that the right to benefit from and to participate in caregiving activities and practices has not heretofore been stressed in the context of those other capacities, freedoms, and opportunities that make up the moral vision at the center of the human rights paradigm. However, the notion of "rights," as in client rights, user rights or patient's rights has been employed in protecting the autonomy and interests of some vulnerable populations. (I thank Robert Goodin for pointing this out to me.) While the rights language has important rhetorical and strategical importance, when the populations at issue are especially vulnerable and dependent, the practical utility of such rights are questionable. (For an excellent discussion of this point see Diane Gibson, "User rights and the frail aged." Journal of Applied Philosophy, 12 (1995), 1-11.
17. Elsewhere I argue that even John Rawls' contemporary version of the contract fails to incorporate the fact of human dependency and that because he does not attend to it, the contractual situation Rawls envisions fails to assure both that those who need care will be cared for and that those who do care will not be exploited by the rest of the population (who effectively freeload on those who taken on that responsibility). See Eva Feder Kittay, "Human dependency and Rawlsian equality," Feminists Rethink the Self, ed. Diana T. Meyers (Boulder, Colo.: Westview Press, 1997), pp. 219-66.
18. The contractarian model might seem attractive for dealing with issues of care, for with its commitment to equality, impartiality, and autonomy it helps to reestablish an equality, sense of fairness and respect for choice rarely accorded to those who are dependent. Yet care rarely takes place between persons who are equally situated or equally empowered, partiality is generally appropriate in situations of care, and autonomy can only be very imperfectly realized for those who are highly dependent and in a very vulnerable situation. One influential contractarian, Normal Daniels, has argued that by including issues of health, including longterm care, as a matter of equality of opportunity, issues of care, particularly those that are questions of distributive justice, can be treated on a contractarian model. See Norman Daniels, Am I My Parents' Keeper? (New York: Oxford University Press, 1988);
19. Daniels and James E. Sabin. Setting Limits Fairly: Can We Learn to Share Medical Resources? (New York: Oxford University Press, 2002);
20. and Daniels, "Appendix B: Need we abandon social contract theory? A reply to Nussbaum," Ethical Choices in Long-Term Care, pp. 67-75.
21. But in the same volume also see Martha Nussbaum, "'Appendix A: Long-term care and social justice: a challenge to conventional ideas of the social contract," pp. 31-65
22. and Eva Feder Kittay, "Appendix C: Can contractualism justify state-supported long-term policies?" pp. 77-83 for a critique of the contractarian tradition.
23. The emerging global political philosophy of neoliberalism places an emphasis on free trade and market institutions with minimalist social security and safety net systems. But markets and free trade are not care-friendly. Carework has not been well served by market forces. For example, the migrations that deplete home nations of careworkers are importantly a consequence of globalization. Furthermore the effects of "commodifying care" are often not salutary. See Paula England and Nancy Folbre, "Contracting for care," Feminist Economics Today, ed. M. Ferber and J. Nelson (Chicago: University of Chicago Press, 2003), pp. 61-79;
24. Nancy Folbre and Julie A. Nelson, "For love or money - or both? "Journal of Economic Perspectives, 14 (#4) (2000), 123-40;
25. Nancy Folbre and Thomas E. Weisskopf, "Did father know best? Families, markets and the supply of caring labor." Economics, Values and Organization, ed. Avner Ben-Ner and Louis Putterman (Cambridge: Cambridge University Press, 1998), pp. 171-205.
26. Also see Clare Ungerson, "Whose empowerment and independence? A cross-national perspective on 'cash for care' schemes," Ageing and Society, 24 (2004), 189-212.
27. A number of virtue ethicists have embraced the notion of care as a virtue; see Michael Slote, Morals from Motives (New York: Oxford University Press, 2001).
28. In Dependent Rational Animals: The Virtue of Dependence and the Virtue of Acknowledging Dependence (Berkeley: University of California Press, 1997)
29. Alasdair MacIntyre has written eloquently and persuasively on the virtue of acknowledged dependency. Stephen L. Darwall's Welfare and Rational Care (Princeton, N.J.: Princeton University Press, 2002) has utilized the concept of rational care in his welfarist ethic. While both Slote and Darwall make a substantial contribution to our understanding of the ethical dimensions of care, both employ the notion of care without stressing either the importance of the labor or the relationship of care. For MacIntyre, the labor of and relationship formed through caring are integral to his virtue of acknowledged dependency and so are especially pertinent to the concerns at hand. MacIntyre recognizes that the exercise of practical reason would be impossible without a prior attitude and labor of care. But none of these authors develops the notion of care as basis for ethics as extensively as have the collected works of feminist care ethicists. In the discussion that follows, I focus primarily on a feminist ethics of care which derives from reflections on women's daily engagement in the labor of caring and in the emotional and relational components of a self engaged in caring.
30. See, for instance, Amartya Sen, "Equality of what?" Welfare and Measurement (Oxford: Blackwell, 1982), pp. 353-69.
31. See Martha Nussbaum, Beyond the Social Contract: Toward Global Justice (Cambridge, Mass.: Harvard University Press, forthcoming). For the text of a draft of the lectures delivered at the Australian National University see http://www.philrsss.anu.edu.au/tanner.
32. The literature is now quite extensive. For some early, but seminal discussions see: Carol Gilligan, In a Different Voice (Cambridge, Mass: Harvard Unversity Press, 1982);
33. Nel Noddings, Caring: A Feminine Approach to Ethics (Berkeley: University of California, 1984);
34. Kittay and Meyers, Women and Moral Theory;
35. Annette C. Baier, "The need for more than justice" Science, Morality and Feminist Theory, ed. Marsha Hanen and Kai Nielsen (Calgary: University of Calgary Press, 1987), pp. 41-56;
36. Virginia Held, Feminist Morality (Chicago: University of Chicago Press, 1993).
37. For some reconsiderations and refinements see: Marilyn Friedman, "Autonomy and social relationship: rethinking the feminist critique," Feminists Rethink the Self, ed. Meyers, pp. 40-61;
38. Susan J. Hekman, Moral Voices Moral Selves: Carol Gilligan and Feminist Moral Theory (University Park: Pennsylvania State University Press, 1995);
39. and Robin West, Caring for Justice (New York: New York University Press, 1999).
40. See for example Michelle Moody-Adams, "The social construction and reconstruction of care," Sex, Preference, and Family, ed. David Estlund and Martha Nussbaum (New York: Oxford University Press, 1997), pp. 3-17.
41. For some recent work along these lines see the essays in The Subject of Care: Feminist Perspectives on Dependency, ed. Eva Feder Kittay and Ellen K. Feder (Totowa, N.J.: Rowman and Littlefield, 2003).
42. This is also a point stressed in McIntyre, Dependent Rational Animals.
43. See especially Eva Kittay, Love's Labor: Women, Dependence and Equality (New York: Routledge, 1999).
44. See Joan Tronto, Moral Boundaries: A Political Argument for an Ethic of Care (New York: Routledge, 1993).
45. For an argument that an ethics of care is vital for international relations see Fiona Robinson, Globalizing Care: Ethics, Feminist Theory and International Relations (Boulder, Colo.: Westview, 1999).
46. In Beyond the Social Contract, Nussbaum argues that contract theories are poorly suited to provide principles to ground claims of obligation between nations that are vastly different in power and wealth. She offers a capabilities approach. While capabilities may offer a measure of what is owed, it is not clear that the capabilities approach provides a reason why more powerful nations should have any responsibilities toward the less powerful. An ethic of care offers the concept of care as a ground of responsibility.
47. One may plausibly argue that these relationships of dependency include our relationship to a nonhuman world. For an environmental ethic which adopts the importance of our dependence on the nonhuman world, see Bonnie Mann, "Dependence on place, dependence in place," The Subject of Care, ed. Kittay and Feder, pp. 348-368.
48. Dan O. C. Kaseje and Bavon Mpenda, "The African perspective," Ethical Choices in Long-Term Care, pp. 31-66.
49. Dan O. C. Kaseje and Bavon Mpenda, "The African perspective," Ibid., 87.
50. Dan O. C. Kaseje and Bavon Mpenda, "The African perspective," Ibid., 88.
51. Iris Young, justice and the Politics of Difference (Princeton, N.J.: Princeton University Press, 1990).
52. Iris Young, "Structural injustice and the politics of difference," Paper presented at the XI Symposium of International Association of Women Philosophers - (Internationalen Assoziation von Philosophinnen IAPh) - The Human Good: Dignity, Equality, Diversity, Göteborg, Sweden, June 17-19, 2004.
53. For discussions of the difference between aborting a fetus who will be blind and preventing blindness see the essays in Prenatal Testing and the Disability Rights Critique, ed. Eric Parens and Adrienne Asch (Washington D.C.: Georgetown University Press, 2000).
54. In Young, Justice and the Politics of Difference.
55. See Dorothy E. Roberts, "Poverty, race, and the distortion of dependency," The Subject of Care, ed. Kittay and Feder, pp. 277-93.
56. In Rhacel Salazar Parrenas, Servants of Globalization: Women, Migration and Domestic Work (Stanford, Calif.: Stanford University Press, 2001).
57. See especially Kittay, Love's Labor.
58. Kittay, Ibid.
59. Ehrenreich and Hochchild, Global Women.
60. Arlie Russell Hochchild, "Love and gold," Global Women, ibid., pp. 15-30.
61. Celia W. Dugger, "An exodus of african nurses puts infants and the ill in peril," New York Times (July 12, 2004), p. 1.
62. See also Health Systems Resource Centre Department for International Development (DFID), International Recruitment of Health Workers to the UK: A Report for DFID (2004 [cited); available from http://www.dfidhealthrc.org/ Shared/publications/reports/int_rec/intrec-main.pdf and on http://www. dfidhealthrc.org/Shared/publications/reports/int_rec/exec-sum.pdf.
63. New York Times, September 1 2001, cited in Hochchild, "Love and gold," p. 17.
64. Ofelia Schutte, "Dependency work, women, and the global economy," The Subject of Care, ed. Kittay and Feder, pp. 138-59.
65. For an excellent account by feminist economists see Paula England and Nancy Folbre, "The Cost of Caring," Annals of the American Academy of Political and Social Science, 561 (#1) (1999), 39-51.
66. See especially Martha Albertson Fineman, The Neutered Mother, the Sexual Family and Other Twentieth Century Tragedies (New York: Routledge, 1995).
67. Anne Fadiman, The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures (New York: Farrar Straus and Giroux, 1997).
68. See, for example: BCODP (British Council of Organizations of Disabled People), Comment on the Report of the Audit Commission (London: BCODP 1987);
69. Mike Oliver, "Disability and dependency: a creation of industrial societies," Disability and Dependency, edited by L. Barton. London (New York: Falmer Press, 1989);
70. Jenny Morris, Independent Lives: Community Care and Disabled People (London: Macmillan, 1993).
71. Lynn May Rivas, "Invisible labors: caring for the independent person," Global Women, ed. Ehrenreich and Hochchild, pp. 70-84.
72. Love's Labor, ch. 2.
73. Rivas, "Invisible labor," p. 79.
74. Rivas, "Invisible labor," Ibid., 80.
75. Asserting this may not require a list of capabilities, but only the notion of capabilities as a way to talk about flourishing.