Skip to main content

The Right to Be Impaired and the Legacy of Eugenics: A Critical Reading of the UN Convention on “Disability” Rights

  • Chapter
  • First Online:
Medicine and Society, New Perspectives in Continental Philosophy

Part of the book series: Philosophy and Medicine ((PHME,volume 120))

  • 1096 Accesses

Abstract

The links between medicine and society can be viewed from many perspectives yet their relationship should always be seen as contested and political. Here I use human rights as my starting point. A sociological account of human rights should address the contested human rights discourse and its possibilities for emancipation as well as domination. Silences are not simply absences, but constitutive features of discourse and practice which inform issues of inclusion, exclusion, and participation (Bhambra and Shilliam in Silencing Human rights. Critical engagements with a contested project, Palgrave Macmillan, New York, 2008). The rights of “disabled” persons have long been a silence in human rights discourse, despite the atrocities against them and many other groups during World War II that informed the development of the UN human rights framework. However, the experimental gassing of 275,000 Germans labeled as “disabled” under the Nazi T4 program (Baker in Teachers College Record, 104:663–703, 2002) predating the war was not widely known, although the Allied governments had at least known of the death camps since 1944 (Swiebocki in London has been informed. Reports by Auschwitz Escapees, Auschwitz Museum, Oswiecim, 2002). Therefore, despite the human rights agenda of the UN being conceptually linked to eugenics by using its worst outcomes as a point of reference, the rights of people targeted by disability oppression were not yet explicitly included as a matter of international concern.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Subscribe and save

Springer+ Basic
$34.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

Notes

  1. 1.

    Jürgen Habermas makes an important point about the distinction between an embryo or fetus not being “something for us to dispose over” while also not having “inalienable human rights” (Habermas 2003, p. 31).

  2. 2.

    See the website of the European Roma Rights Centre http://www.errc.org [last accessed 8 August 2013].

  3. 3.

    See, www.csie.org.uk/inclusion [last accessed 8 August 2013].

References

  • Adams, M. B., Garland, E., & Weiss, S. F. (2005). Human heredity and politics: A comparative institutional study of the Eugenics Record Office at Cold Spring Harbor (United States), the Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics (Germany), and the Maxim Gorky Medical Genetics Institute (USSR). Osiris, 20, 232–262.

    Article  Google Scholar 

  • Anker, C. van den (2005). Human rights and cosmopolitanism In R. Smith & C. van den Anker (Eds.) Essentials of human rights (pp. 67–69). London: Hodder Arnold.

    Google Scholar 

  • Baker, B. (2002). The hunt for disability: The new eugenics and the normalization of school children. Teachers College Record, 104(4), 663–703.

    Article  Google Scholar 

  • Barrett, E., & Kurzman, C. (2004). Globalizing social movement theory: The case of eugenics. Theory and Society, 33(5), 487–527.

    Article  Google Scholar 

  • Beckett, A. E. (2005). Reconsidering citizenship in the light of the concerns of the UK disability movement. Citizenship Studies, 9(4), 405–421.

    Article  Google Scholar 

  • Beckett, A. E. (2006). Understanding social movements: Theorising the disability movement in conditions of late modernity. The Sociological Review, 54(4), 734–752.

    Article  Google Scholar 

  • Beckett, A. E. (2009). Challenging disabling attitudes, building an inclusive society: Considering the role of education in encouraging non-disabled children to develop positive attitudes towards disabled people. British Journal of Sociology of Education, 30(3), 317–329.

    Article  Google Scholar 

  • Bhambra, G. K., & Shilliam, R. (Eds.). (2008). Silencing human rights. Critical engagements with a contested project. New York and Basingstoke: Palgrave Macmillan.

    Google Scholar 

  • Bickenbacha, J. E., Chatterji, S., Badley, E. M., & Ústun, T. B. (1999). Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science and Medicine, 48, 1173–1187.

    Article  Google Scholar 

  • Bishop, A. (2002 [1997]) Becoming an ally. Breaking the cycle of oppression. Halifax, Nova Scotia, Canada: Fernwood Publishing.

    Google Scholar 

  • Brennan, F. (2005). Disability and Human Rights. In R. Smith & C. van den Anker (Eds.), The essentials of human rights (pp. 93–97). London: Hodder Arnold.

    Google Scholar 

  • Broberg, G., & Roll-Hanssen, N. (Eds.). (2005). Eugenics and the welfare state. Sterilization policy in Denmark, Sweden, Norway and Finland. East Lansing, Michigan: Michigan State University Press.

    Google Scholar 

  • Buchanan, A., Brock, D. W., Daniels, N., & Wikler, D. (2000). From chance to choice. Genetics and justice. Cambridge, New York, Melbourne and Madrid: Cambridge University Press.

    Google Scholar 

  • Carel, H. (2007). Havi Carel: My 10-year death sentence. In The Independent, 19 march. Accessed July 20, 2011 from http://www.independent.co.uk/news/people/profiles/havi-carel-my-10year-death-sentence-440805.html.

  • Castles, K. (2002). Quiet eugenics; sterilization in North Carolina’s institutions for the mentally retarded, 1945–1965. The Journal of Southern History, 68(4), 849–878.

    Article  Google Scholar 

  • David, H. P., Fleischhacker, J., & Hohn, C. (1988). Abortion and Eugenics in Nazi Germany. Population and Development Review, 14(1), 81–112.

    Article  Google Scholar 

  • Dixon, D. P. (2008). Informed consent or institutionalised eugenics? How the medical profession encourages abortion of foetuses with down syndrome. Issues in Law and Medicine, 24(1), 3–59.

    Google Scholar 

  • Frank, A. W. (2000). Illness and autobiographical work: Dialogue as narrative destabilization. Qualitative Sociology, 23(1), 135–156.

    Article  Google Scholar 

  • Gabel, S., & Peters, S. (2004). Presage of a paradigm shift? Beyond the social model of disability towards resistance theories of disability. Disability and Society, 19(6), 585–600.

    Google Scholar 

  • Gleeson, B. J. (1997). Disability studies: A historical materialist view. Disability and Society, 12(2), 179–202.

    Article  Google Scholar 

  • Habermas, J. (2003). The future of human nature. Cambridge: Polity Press.

    Google Scholar 

  • Hampton, S. J. (2005). Family eugenics. Disability and Society, 20(5), 553–561.

    Article  Google Scholar 

  • Harrison, B. (1993). A note on ethical issues in the use of autobiography in sociological research. Sociology, 27(1), 101–109.

    Article  Google Scholar 

  • Hohendorf, G., Rotzoll, M., Richter, P., Eckart, W., & Mundt, C. (2002). Victims of Nazi euthanasia, the so-called T4 action. First results of a project at the German Federal Archives to disclose records of killed patients. Nervenarzt, 73(11), 1065–1074.

    Article  Google Scholar 

  • Holt, N. L. (2003). Representation, legitimation, and autoethnography: An autoethnographic writing story. International Journal of Qualitative Methods, 2(1), 18–28.

    Google Scholar 

  • Joseph, M. (1990). Sociology for everyone. Cambridge: Polity.

    Google Scholar 

  • Kanter, A. S. (2003). The globalisation of disability rights law. Syracuse Journal of International Law and Commerce [online]., 30(2), 241.

    Google Scholar 

  • Khalili-Borna, C.A. (2007). Technological advancement and international human rights: Is science improving human life or perpetuating human right violations? Michigan Journal of International Law, 29, 95.

    Google Scholar 

  • Khosravi, S. (2010a). An ethnography of migrant ‘illegality’ in Sweden: Included yet excepted? Journal of International Political Theory, 6(1), 95–116.

    Article  Google Scholar 

  • Khosravi, S. (2010b). The ‘illegal’ traveler: An auto-ethnography of borders. Basingstoke: Palgrave.

    Book  Google Scholar 

  • Kliewer, C., & Drake, S. (1998). Disability, eugenics and the current ideology of segregation; a modern tale. Disability and Society, 13(1), 95–111.

    Article  Google Scholar 

  • Kor, E. M., & Rojany Buccieri, L. (2009). Surviving the Angel of Death. The story of a Mengele Twin in Auschwitz Terre Haute. IL: Tanglewood.

    Google Scholar 

  • Liachowitz, C. H. (1988). Disability as a social construct: Legislative roots. Philadelphia: University of Pennsylvania Press.

    Google Scholar 

  • Mabett, D. (2005). The development of rights-based social policy in the European Union: The example of disability rights. Journal of Common Market Studies, 43(1), 97–120.

    Article  Google Scholar 

  • Mann, J. M. (1997). Medicine and public health, ethics and human rights. Hastings Center Report, 27, 6–13.

    Article  Google Scholar 

  • Mason, M. (2000). Incurably human. London: Inclusive Solutions.

    Google Scholar 

  • McKeown, A. (2012). Response given in the Watershed, 12 Dec 2012.

    Google Scholar 

  • Miller, S. M., Wilson Nelson, M., & Moore, M. T. (1998). Caught in the paradigm gap: Qualitative researchers’ lived experience and the politics of epistemology. American Educational Research Journal, 35(3), 377–416.

    Article  Google Scholar 

  • Nahman, M. (2013). Extractions. An ethnography of reproductive tourism. Basingstoke and New York: Pagrave MacMillan.

    Google Scholar 

  • Nussbaum, M. (2006). Frontiers of justice. Disability, nationality, species membership. Boston: MA Harvard University Press.

    Google Scholar 

  • Nyiszli, M. (2001). I was Dr Mengele’s assistant. Oswiecim: Auschwitz Museum.

    Google Scholar 

  • Parens, E., & Asch, A. (2000). Prenatal testing and disability rights. Washington, DC: Georgetown University Press.

    Google Scholar 

  • Paul, D. (1984). Eugenics and the left. Journal of the History of Ideas, 45(4), 567–590.

    Article  Google Scholar 

  • Pfeiffer, D. (1994). Eugenics and disability discrimination. Disability and Society, 9(4), 481–499.

    Article  Google Scholar 

  • Quinn, G. (1999). The human rights of people with disabilities under EU Law. In P. Alston (Ed.), The EU and human rights. Oxford: Oxford University Press.

    Google Scholar 

  • Rembis, M. A. (2009). (Re)Defining disability in the ‘genetic age’: Behavioural genetics, ‘new’ eugenics, and the future of impairment. Disability and Society, 24(5), 585–597.

    Article  Google Scholar 

  • Rieser, R., & Mason, M. (1990). Disability equality in the classroom: A human rights issue. London: ILEA.

    Google Scholar 

  • Shakespeare, T. (2006). Disability rights and wrongs. London: Routledge.

    Google Scholar 

  • Sparkes, A. C. (2002). Autoethnography: Self-indulgence or something more? In A. Bochner & C. Ellis (Eds.), Ethnographically speaking: Autoethnography, literature, and aesthetics. New York: AltaMira.

    Google Scholar 

  • Sparrow, R. (2011). A not-so-new eugenics: Harris and Savulescu on human enhancement. Hastings Center Report, 41(1), 32–42.

    Google Scholar 

  • Spektorowski, A., & Mizrachi, E. (2004). Eugenics and the Welfare State in Sweden: The politics of social margins and the idea of a productive society. Journal of Contemporary History, 39(3), 333–352.

    Article  Google Scholar 

  • Stanley, L. (1993). On auto/biography in sociology. Sociology, 27(1), 41–52.

    Article  Google Scholar 

  • Stark, H., & Brown Trinidad, S. (2007). Choose your method: A comparison of phenomenology, discourse analysis, and grounded theory. Qualitative Health Research, 17, 1372–1380.

    Article  Google Scholar 

  • Stein, M. A., & Lord, J. E. (2007). Jacobus tenBroek, participatory justice and the UN convention on the rights of persons with disabilities. Texas Journal on Civil Liberties and Civil Rights, 13(2), 167–185.

    Google Scholar 

  • Stern, A. M. (2005). Sterilised in the name of public health. Race, |immigration, and reproductive control in modern California. American Journal of Public Health, 95(7), 1128–1138.

    Article  Google Scholar 

  • Swiebocki, H. (2002). London has been informed. Reports by Auschwitz Escapees. Oswiecim: Auschwitz Museum.

    Google Scholar 

  • Tierney, W. G. (1998). Life history’s history: Subjects foretold. Qualitative Inquiry, 4, 49–70.

    Article  Google Scholar 

  • Tyner, J. A. (1999). The geopolitics of eugenics and the exclusion of Philippine immigrants from the United States. Geographical Review, 89(1), 54–73.

    Article  Google Scholar 

  • Worsley, P. (Ed.). (1970). Introducing sociology. Harmondsworth: Penguin books.

    Google Scholar 

  • Zola, I. K. (1989). Toward the necessary universalizing of a disability policy. The Millbank Quarterly, 67(22), 401–428.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Christien van den Anker .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2015 Springer Science+Business Media Dordrecht

About this chapter

Cite this chapter

van den Anker, C. (2015). The Right to Be Impaired and the Legacy of Eugenics: A Critical Reading of the UN Convention on “Disability” Rights. In: Meacham, D. (eds) Medicine and Society, New Perspectives in Continental Philosophy. Philosophy and Medicine, vol 120. Springer, Dordrecht. https://doi.org/10.1007/978-94-017-9870-9_15

Download citation

Publish with us

Policies and ethics