Advertisement

Journal of Bioethical Inquiry

, Volume 5, Issue 2–3, pp 125–135 | Cite as

‘You Say You’re Happy, but…’: Contested Quality of Life Judgments in Bioethics and Disability Studies

  • Sara Goering
Article

Abstract

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience.

Keywords

Quality of life Disability Impairment Marginalized Bioethics Lowered expectation Denial Feminist 

Notes

Acknowledgments

I am grateful for the detailed comments from the anonymous reviewers for the special issue and its guest editor, Shelley Tremain, as well very helpful advice provided by Dennis Lang, my colleague in the University of Washington Disability Studies program.

References

  1. 1.
    Swain, J., French, S., & Cameron, C. (2003). “What’s in a Name?” Controversial issues in a disabling society. Buckingham: Open University Press.Google Scholar
  2. 2.
    Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press. (esp. Chap. 2).Google Scholar
  3. 3.
    Oliver, M. (1996). Understanding disability: From theory to practice. New York: St. Martin’s Press.Google Scholar
  4. 4.
    Tremain, S. (2002). On the subject of impairment. In M. Corker, & T. Shakespeare (Eds.), Disability/Postmodernity (pp. 32–47). London: Continuum.Google Scholar
  5. 5.
    Tremain, S. (2001). On the government of disability. Social Theory and Practice, 27(4), 616–636.Google Scholar
  6. 6.
    Shakespeare, T. (2006). Disability rights and wrongs. New York: Routledge.Google Scholar
  7. 7.
    Kuczewski, M. (2001). Disability: An agenda for bioethics. American Journal of Bioethics, 1(3), 36–44.PubMedCrossRefGoogle Scholar
  8. 8.
    Charlton, J. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.Google Scholar
  9. 9.
    Ostrom, C. Some favor slower right to die for paralyzed. Seattle Times. 2007 Sept 16; Available from: http://seattletimes.nwsource.com/html/health/2003886893_decision16m.html.
  10. 10.
    Crow, L. (1996). Including all of our lives: Renewing the social model of disability. In J. Morris (Ed.), Encounters with strangers: Feminism and disability (pp. 206–226). London: Women’s Press Ltd.Google Scholar
  11. 11.
    Nussbaum, M. (2001). Upheavals of thought: The intelligence of the emotions. Cambridge: Cambridge University Press.Google Scholar
  12. 12.
    Jaggar, A. (1989). Love and knowledge: emotion in feminist epistemology. Inquiry, 32, 151–176.Google Scholar
  13. 13.
    Young, I. (1990). Justice and the politics of difference. Princeton: Princeton University Press.Google Scholar
  14. 14.
    Fraser, N., & Honneth, A. (2003). Redistribution or recognition? A political–philosophical exchange. London: Verso.Google Scholar
  15. 15.
    Wasserman, D., Bickenbach, J., & Wachbroit, R. (2005). Quality of life and human difference: Genetic testing, health care and disability. New York: Cambridge University Press.Google Scholar
  16. 16.
    Mahowald, M. (1998). A feminist standpoint. In A. Silvers, D. Wasserman, & M. Mahowald (Eds.), Disability, difference, and discrimination (pp. 209–251). Lanham: Rowman & Littlefield.Google Scholar
  17. 17.
    Parens, E., & Asch, A. (2000). The disability rights critique of prenatal genetic testing: Reflections and recommendations. In E. Parens, & A. Asch (Eds.), Prenatal testing and disability rights (pp. 3–43). Washington DC: Georgetown University Press.Google Scholar
  18. 18.
    Kittay, E. (2006). On the margins of moral personhood. Ethics, 116(1), 100–131.CrossRefGoogle Scholar
  19. 19.
    Silvers, A. (1998). Formal justice. In A. Silvers, D. Wasserman, & M. Mahowald (Eds.), Disability, difference, and discrimination (pp. 13–145). Lanham: Rowman & Littlefield.Google Scholar
  20. 20.
    Asch, A. (1999). Prenatal diagnosis and selective abortion: a challenge to practice and policy. American Journal of Public Health, 89(11), 1649–1657.PubMedGoogle Scholar
  21. 21.
    Amundson, R. (2005). Disability, ideology and quality of life: A bias in biomedical ethics. In D. Wasserman, J. Bickenbach, & R. Wachbroit (Eds.), Quality of life and human difference (pp. 101–124). New York: Cambridge University Press.Google Scholar
  22. 22.
    Wendell, S. (1989). Toward a feminist theory of disability. Hypatia, 4(2), 104–124.PubMedGoogle Scholar
  23. 23.
    Jonsen, A. (2003). Birth of bioethics. New York: Oxford University Press.Google Scholar
  24. 24.
    Swanson, L. (2004). Gregor Wolbring: an ardent advocate. Abilities, 60, 14–15.Google Scholar
  25. 25.
    Dreger, A. (2004). One of us: Conjoined twins and the future of normal. Cambridge: Harvard University Press.Google Scholar
  26. 26.
    Mailhot, A. Bioethics: theories from hell. 1994; Available at: http://www.notdeadyet.org/docs/bioethic.html.
  27. 27.
    Amundson, R., & Tresky, S. (2007). On a bioethical challenge to disability rights. Journal of Medicine and Philosophy, 32, 541–561.PubMedGoogle Scholar
  28. 28.
    Singer, P. (2001). Response to Mark Kuczewski. American Journal of Bioethics, 1(3), 55–56.PubMedCrossRefGoogle Scholar
  29. 29.
    Wolf, S. (1996). Introduction: Gender and feminism in bioethics. In S. Wolf (Ed.), Feminism & bioethics: Beyond reproduction (pp. 3–43). New York: Oxford University Press.Google Scholar
  30. 30.
    Sherwin, S. (1992). No longer patient: Feminist ethics and health care. Philadelphia: Temple University Press.Google Scholar
  31. 31.
    Warren, V. (1992). Feminist directions in medical ethics. In B. Holmes, & L. Purdy (Eds.), Feminist perspectives in medical ethics (pp. 32–45). Bloomington: Indiana University Press.Google Scholar
  32. 32.
    Held, V. (1995). Feminist moral inquiry and the feminist future. In V. Held (Ed.), Justice and care: Essential readings in feminist ethics (pp. 153–176). Boulder: Westview Press.Google Scholar
  33. 33.
    Urban-Walker, M. (1989). Moral understandings: alternative ‘epistemology’ for a feminist ethics. Hypatia, 4(2), 15–28.Google Scholar
  34. 34.
    Hahn, H., & Belt, T. (2004). Disability identity and attitudes toward cure in a sample of disabled activists. Journal of Health and Social Behavior, 45, 453–464.PubMedCrossRefGoogle Scholar
  35. 35.
    Morris, S. (2006). Twisted lies: My journey in an imperfect body. In E. Parens (Ed.), Surgically shaping children (pp. 3–12). Baltimore: Johns Hopkins University Press.Google Scholar
  36. 36.
    Longmore, P. (2003). Why I burned my book and other essays p. 209. Philadelphia: Temple University Press.Google Scholar
  37. 37.
    Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. New York: Routledge.Google Scholar
  38. 38.
    Kent, D. (2000). Somewhere a mocking bird. In E. Parens, & A. Asch (Eds.), Prenatal testing and disability rights (pp. 57–63). Washington DC: Georgetown University Press.Google Scholar
  39. 39.
    Lane, H., & Grodin, M. (1997). Ethical issues in cochlear implant surgery. Kennedy Institute of Ethics Journal, 7(3), 231–251.PubMedCrossRefGoogle Scholar
  40. 40.
    Shakespeare, T., & Watson, N. (2002). The social model of disability: an outdated ideology? Research in Social Science and Disability, 2, 9–28.CrossRefGoogle Scholar
  41. 41.
    Dworkin, G. (1998). Theory and practice of autonomy. Cambridge: Cambridge University Press (esp. Chapter 5).Google Scholar
  42. 42.
    Mills, C. (2003). A right to an open future? Journal of Social Philosophy, 34(4), 499–509.CrossRefGoogle Scholar
  43. 43.
    McMahan, J. (2005). Preventing the existence of people with disabilities. In D. Wasserman, J. Bickenbach, & R. Wachbroit (Eds.), Quality of life and human difference: Genetic testing, health care and disability (pp. 142–171). New York: Cambridge University Press.Google Scholar
  44. 44.
    Silvers, A. (2003). On the possibility and desirability of constructing a neutral conception of disability. Theoretical Medicine, 24, 471–487.CrossRefGoogle Scholar
  45. 45.
    Brock, D. (2005). Preventing genetically transmitted disabilities while respecting persons with disabilities. In D. Wasserman, J. Bickenbach, & R. Wachbroit (Eds.), Quality of life and human difference: Genetic testing, health care and disability (pp. 67–100). New York: Cambridge University Press.Google Scholar
  46. 46.
    Nussbaum, M. (2000). Women and human development: The capabilities approach. New York: Cambridge University Press.Google Scholar
  47. 47.
    Okin, S. (1989). Justice, gender and the family. New York: Basic Books.Google Scholar
  48. 48.
    Benhabib, S. (1992). Situating the self. New York: Routledge.Google Scholar
  49. 49.
    Narayan, U. (1997). Dislocating cultures: Identities, traditions and third-world feminisms. London: Routledge.Google Scholar
  50. 50.
    Tong, R. (2001). Is global bioethics possible as well as desirable? In R. Tong, G. Anderson, & A. Santos (Eds.), Globalizing feminist bioethics: Crosscultural perspectives (pp. 27–36). Boulder: Westview Press.Google Scholar
  51. 51.
    Sherwin, S. (2001). Feminist reflections on theory in global bioethics. In R. Tong, G. Anderson, & A. Santos (Eds.), Globalizing feminist bioethics: Crosscultural perspectives (pp. 12–26). Boulder: Westview Press.Google Scholar
  52. 52.
    Jaggar, A. (1995). Toward a feminist conception of moral reasoning. In J. Sterba (Ed.),Morality and Social Justice (pp. 115–146). Lanham: Rowman & Littlefield.Google Scholar

Copyright information

© Springer Science+Business Media B.V. 2008

Authors and Affiliations

  1. 1.Department of Philosophy, Program on Values in SocietyUniversity of WashingtonSeattleUSA

Personalised recommendations