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Epistemic Oppression and Ableism in Bioethics

Published online by Cambridge University Press:  29 September 2020

Christine Wieseler
Christine Wieseler*
Affiliation:
Department of Philosophy, California State Polytechnic University, 3801 W. Temple Blvd, Pomona, CA91768
*
Corresponding author. [email protected]
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Abstract

Disabled people face obstacles to participation in epistemic communities that would be beneficial for making sense of our experiences and are susceptible to epistemic oppression. Knowledge and skills grounded in disabled people's experiences are treated as unintelligible within an ableist hermeneutic, specifically, the dominant conception of disability as lack. My discussion will focus on a few types of epistemic oppression—willful hermeneutical ignorance, epistemic exploitation, and epistemic imperialism—as they manifest in some bioethicists’ claims about and interactions with disabled people. One of the problems with the epistemic phenomena with which I am concerned is that they direct our skepticism regarding claims and justifications in the wrong direction. When we ought to be asking dominantly situated epistemic agents to justify their knowledge claims, our attention is instead directed toward skepticism regarding the accounts of marginally situated agents who are actually in a better position to know. I conclude by discussing disabled knowers’ responses to epistemic oppression, including articulating the epistemic harm they have undergone as well as ways of creating resistant ways of knowing.

Type
Articles
Information
Hypatia , Volume 35 , Issue 4 , Fall 2020 , pp. 714 - 732
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press on behalf of Hypatia, a Nonprofit Corporation

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References

Albrecht, Gary, and Devlieger, Patrick. 1999. The disability paradox: High quality of life against all odds. Social Science and Medicine 48: 977–88.CrossRefGoogle ScholarPubMed
Amundson, Ron. 2005. Disability, ideology, and quality of life. In Quality of life and human difference: Genetic testing, health care, and disability, ed. Wasserman, David, Bickenbach, Jerome, and Wachbroit, Robert. New York: Cambridge University Press.Google Scholar
Aragon, Corwin. 2017. Faces of epistemic oppression. Unpublished manuscript.Google Scholar
Asch, Adrienne, and Parens, Erik. 2012. The disability rights critique of prenatal testing. In Arguing about bioethics, ed. Holland, Stephen. New York: Routledge.Google Scholar
Bach, John, and Tilton, Margaret. 1994. Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. Archives of Physical Medicine and Rehabilitation 75: 626–34.CrossRefGoogle ScholarPubMed
Barnes, Elizabeth. 2014. Valuing disability, causing disability. Ethics 125 (1): 88–113.CrossRefGoogle Scholar
Barnes, Elizabeth. 2015. Confessions of a bitter cripple. Featured philosop-her: Elizabeth Barnes. ed. Krishnamurthy, Meena. http://politicalphilosopher.net/2015/05/15/featured-philosop-her-elizabeth-barnes/.Google Scholar
Barnes, Elizabeth. 2016. The minority body: A theory of disability. Oxford: Oxford University Press.CrossRefGoogle Scholar
Berenstain, Nora. 2016. Epistemic exploitation. Ergo 3 (22): 569–90.Google Scholar
Brock, Dan. 2005. “Preventing Genetically Transmitted Disabilities while Respecting Persons with Disabilities,” In Quality of Life and Human Difference, ed. Wassermen, David, Bickenbach, Jerome, and Wachbroit, Robert. Cambridge: Cambridge University Press.Google Scholar
Buchanan, Allen, Dan Brock, Norman Daniels, and Wikler, Daniel. 2000. From chance to choice: Genetics and justice. New York: Cambridge University Press.CrossRefGoogle Scholar
Campbell, Stephen, and Stramondo, Joseph. 2017. The complicated relationship of disability and well-being. Kennedy Institute of Ethics Journal 27 (2): 151–84.CrossRefGoogle ScholarPubMed
Carel, Havi, and Kidd, James. 2014. Epistemic injustice in heathcare: A philosophical analysis. Medicine, Health Care, and Philosophy 17 (4): 529–40.CrossRefGoogle Scholar
Carel, Havi, and Kidd, Ian James. 2017. Epistemic injustice and illness. Journal of Applied Philosophy 34 (2): 172–90.Google Scholar
Carlson, Licia. 2010. The faces of intellectual disability: Philosophical reflections. Bloomington: Indiana University Press.Google Scholar
Clare, Eli. 2017. Brilliant imperfection: Grappling with cure. Durham, N.C.: Duke University Press.Google Scholar
Cupples, Laura. 2020. Disability, epistemic harms, and the quality-adjusted life year. IJFAB: International Journal of Feminist Approaches to Bioethics 13 (1): 46–62.Google Scholar
Daniels, Norman. 1981. “Health-Care Needs and Distributive Justice.” Philosophy & Public Affairs 10: 146–79.Google ScholarPubMed
Daniels, Norman. 2002. Justice, health, and health care. In Medicine and social justice: Essays on the distribution of health care, ed. Rhodes, Rosamond, Battin, Margaret, and Silvers, Anita. Oxford: Oxford University Press.Google Scholar
Davis, Dena. 2009. Genetic dilemmas: Reproductive technology, parental choices, and children's futures, 2nd ed. Oxford: Oxford University Press.Google Scholar
Dotson, Kristie. 2012. A cautionary tale: On limiting epistemic oppression. Frontiers: A Journal of Women Studies 33 (1): 24–47.CrossRefGoogle Scholar
Dotson, Kristie. 2014. Conceptualizing epistemic oppression. Social Epistemology: A Journal of Knowledge, Culture, and Policy 28 (2): 115–38.CrossRefGoogle Scholar
Fricker, Miranda. 1999. Epistemic oppression and epistemic privilege. Canadian Journal of Philosophy 29 (Supplement 1): 191–210.Google Scholar
Fricker, Miranda. 2007. Epistemic injustice: Power and the ethics of knowing. Oxford: Oxford University Press.CrossRefGoogle Scholar
Fricker, Miranda. 2017. Evolving concepts of epistemic injustice. In The Routledge handbook of epistemic injustice, ed. Kidd, Ian James, Medina, José, and Pohlhaus, Gaile Jr. New York: Routledge.Google Scholar
Garland-Thomson, Rosemarie. 1997. Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press.Google Scholar
Garland-Thomson, Rosemarie. 2017. Disability bioethics: From theory to practice. Kennedy Institute of Ethics Journal 27 (2): 323–39.CrossRefGoogle ScholarPubMed
Glover, Jonathan. 2006. Choosing children: The ethical dilemmas of genetic intervention. Oxford: Oxford University Press.CrossRefGoogle Scholar
Goering, Sara. 2008. “You say you're happy, but . . .”: Contested quality of life judgments in bioethics and disability studies. Journal of Bioethical Inquiry 5: 125–35.CrossRefGoogle Scholar
Guenther, Lisa. 2017. Epistemic injustice and phenomenology. In The Routledge handbook of epistemic injustice, ed. Kidd, Ian James, Medina, José, and Pohlhaus, Gaile Jr. New York: Routledge.Google Scholar
Hamblin, James. 2014. How not to talk about the culture of sexual assault. The Atlantic, March 29. https://www.theatlantic.com/health/archive/2014/03/how-not-to-talk-about-the-culture-of-sexual-assault/359845/Google Scholar
Harding, Sandra. 1991. Whose science? Whose knowledge?: Thinking from women's lives. Ithaca, N.Y.: Cornell University Press.Google Scholar
Ho, Anita. 2011. Trusting experts and epistemic humility in disability. IJFAB: International Journal of Feminist Approaches to Bioethics 4 (2): 102–23.Google Scholar
Hopwood, Mark. 2016. “Terrible Purity”: Peter Singer, Harriet McBryde Johnson, and the moral significance of the particular. Journal of the American Philosophical Association 2 (4): 637–55.CrossRefGoogle Scholar
Jaggar, Alison. 1989. Love and knowledge: Emotion in feminist epistemology. Inquiry: An Interdisciplinary Journal of Philosophy 32 (2): 151–76.CrossRefGoogle Scholar
Johnson, Harriet McBryde. 2005. Too late to die young: Nearly true tales from a life. New York: Henry Holt and Company.Google Scholar
Johnson, Merri Lisa, and McRuer, Robert. 2014. Cripistemologies: Introduction. Journal of Literary & Cultural Disability Studies 8 (2): 127–47.CrossRefGoogle Scholar
Kafer, Alison. 2013. Feminist, queer, crip. Bloomington: Indiana University Press.Google Scholar
Kidd, Ian James, Medina, José, and Pohlhaus, Gaile Jr., eds. 2017. The Routledge handbook of epistemic injustice. New York: Routledge.CrossRefGoogle Scholar
Kittay, Eva. 2009. The personal is philosophical is political: A philosopher and mother of a cognitively disabled person sends notes from the battlefield. Metaphilosophy 40 (3–4): 606–27.CrossRefGoogle Scholar
Kittay, Eva. 2019. Learning from my daughter: The value and care of disabled minds. Oxford: Oxford University Press.CrossRefGoogle Scholar
Kuczewski, Mark. 2001. Disability: An agenda for bioethics. American Journal for Bioethics 1 (3): 36–44.CrossRefGoogle ScholarPubMed
Lewis, Talila. 2020. Ableism 2020: An updated definition. https://www.talilalewis.com/blog.Google Scholar
Lugones, María, and Spelman, Elizabeth. 1983. Have we got a theory for you! Feminist theory, cultural imperialism, and the demand for the “woman's voice.” Women's Studies International Forum 6: 573–81.CrossRefGoogle Scholar
Mackenzie, Catriona, and Scully, Jackie Leach. 2007. Moral imagination, disability and embodiment. Journal of Applied Philosophy 24 (4): 335–51.CrossRefGoogle Scholar
McMahan, Jeff. 2005. Preventing the existence of people with disabilities. In Quality of life and human difference: Genetic testing, health care, and disability, ed. Wasserman, David, Bickenbach, Jerome, and Wachbroit, Robert. New York: Cambridge University Press.Google Scholar
Medina, José. 2013. The epistemology of resistance: Gender and racial oppression, epistemic injustice, and resistant imaginations. Oxford: Oxford University Press.CrossRefGoogle Scholar
Nosek, Margaret, Fuhrer, Marcus, and Potter, Carol. 1995. Life satisfaction of people with physical disabilities: Relationship to personal assistance, disability status, and handicap. Rehabilitation Psychology 40: 191–202.CrossRefGoogle Scholar
Nussbaum, Martha. 2001. Frontiers of justice: Disability, nationality, and species membership. Cambridge, Mass.: The Belknap Press of Harvard University Press.Google Scholar
Peña-Guzmán, David M., and Reynolds, Joel Michael. 2019. The harm of ableism: Medical error and epistemic injustice. Kennedy Institute of Ethics Journal 29 (3): 205–42.CrossRefGoogle ScholarPubMed
Piepzna-Samarasinha, Leah Lakshmi. 2018. Care work: Dreaming disability justice. Vancouver: Arsenal Pulp Press.Google Scholar
Pohlhaus, Gaile Jr. 2011. Wrongful requests and strategic refusals to understand. In Feminist epistemology and philosophy of science, ed. Grasswick, Heidi. Dordrecht: Springer.Google Scholar
Pohlhaus, Gaile Jr. 2012. Relational knowing and epistemic injustice: Toward a theory of “willful hermeneutical ignorance.” Hypatia 27 (4): 715–35.CrossRefGoogle Scholar
Price, Janet, and Shildrick, Margrit. 2002. Bodies together: Touch, ethics, and disability. In Disability/postmodernity: Embodying disability theory, ed. Corker, Mairian and Shakespeare, Tom. New York: Bloomsbury.Google Scholar
Price, Margaret. 2015. The bodymind problem and the possibilities of pain. Hypatia 30 (1): 268–84.CrossRefGoogle Scholar
Reynolds, Joel Michael. 2017. “I'd rather be dead than disabled”: The ableist conflation and the meanings of disability. Review of Communication 17 (3): 149–63.CrossRefGoogle Scholar
Reynolds, Joel Michael. 2020. “What if there's something wrong with her?”: How biomedical technologies contribute to epistemic injustice in healthcare. Southern Journal of Philosophy 58 (1): 161–85.CrossRefGoogle Scholar
Saxton, Marsha. 2013. Disability rights and selective abortion. In The disability studies reader, 4th ed., ed. Davis, Lennard. New York: Routledge.Google Scholar
Schalk, Sami. 2018. Bodyminds reimagined: (Dis)ability, race, and gender in black women's speculative fiction. Durham, N.C.: Duke University Press.Google Scholar
Scully, Jackie Leach. 2018. From “She would say that, wouldn't she?” to “Does she take sugar?”: Epistemic injustice and disability. IJFAB: International Journal of Feminist Approaches to Bioethics 11 (1): 106–24.Google Scholar
Silvers, Anita. 2005. Predicting genetic disability while commodifying health. In Quality of life and human difference: Genetic testing, health care, and disability, ed. Wasserman, David, Bickenbach, Jerome, and Wachbroit, Robert. Cambridge, UK: Cambridge University Press.Google Scholar
Singer, Peter. 1993. Practical ethics, 2nd ed. Cambridge, UK: Cambridge University Press.Google Scholar
Singer, Peter. 2001. Response to Mark Kuczewski. American Journal of Bioethics 1 (3): 55–56.CrossRefGoogle ScholarPubMed
Singer, Peter. 2008. Happy nevertheless. New York Times, December 24. https://www.nytimes.com/2008/12/28/magazine/28mcbryde-t.html.Google Scholar
Singer, Peter. 2009. Peter Singer under fire: The moral iconoclast faces his critics. ed. Schaler, Jeffrey. Peru, Ill.: Open Court Publishing Company.Google Scholar
Singer, Peter. 2016. Ethics in the real world: 82 brief essays on things that matter. Princeton: Princeton University Press.Google Scholar
Tremain, Shelley. 2017a. Foucault and feminist philosophy of disability. Ann Arbor: University of Michigan Press.CrossRefGoogle Scholar
Tremain, Shelley, 2017b. Knowing disability, differently. In The Routledge handbook of epistemic injustice, ed. Kidd, Ian James, Medina, José, and Pohlhaus, Gaile Jr. New York: Routledge.Google Scholar
Ubel, Peter, Loewenstein, George, and Jepson, Christopher. 2003 Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Quality of Life Research 12 (6): 599–607.CrossRefGoogle ScholarPubMed
Wendell, Susan. 1989. Toward a feminist theory of disability. Hypatia 4 (2): 104–24.CrossRefGoogle Scholar
Wieseler, Christine. 2012. A philosophical investigation: Interrogating practices and beliefs about disability. Social Philosophy Today 28: 29–45.CrossRefGoogle Scholar
Wieseler, Christine. 2016. Objectivity as neutrality, nondisabled ignorance, and strong objectivity in biomedical ethics. Social Philosophy Today 32: 85–106.CrossRefGoogle Scholar
Young, Iris Marion. 1990. Justice and the politics of difference. Princeton: Princeton University Press.Google Scholar