DSQ > Winter/Spring 2007, Volume 27, No.1-2

News from around the world over the last couple of months has me worried — worried that gains made by disability rights activists over the last couple of decades will be lost. Worried that legislators, policy makers, educators, and others, in a variety of countries, don't understand the capacities, dreams and needs of people with significant disabilities. Worried that people with disabilities around the globe continue to be euthanized, and denied access to appropriate medical care. Worried that a new eugenics era is about to unfold.

A prominent medical journal, under the auspices of the American Medical Association, published a paper in October 2006, in which researchers performed a hysterectomy on, and gave a course of hormone "treatment" to, a young 6-year old child with significant developmental disabilities. Done at the request of her parents, the protocol was designed to limit the child's growth in order to facilitate ease of her care over the course of her lifetime, allowing the parents to care for her more conveniently, and less expensively, at home. The authors advocate that this kind of treatment option should be made available to parents on request (Gunther & Diekema, 2006).

London's Daily Mail reported in November 2006 that the Church of England recommends that physicians allow newborn babies with disabilities, or born significantly prematurely, to die. Church leaders note that financial considerations for care, education, and support, both immediately and for the long term, should be taken into account when making such decisions (Sears, 2006).

Australia has had a somewhat checkered history over the last couple of decades in supporting the rights of people with disabilities. Reports of the sterilization of women with disabilities there have been made public for ten years (Brady, Briton, & Grover, 2001; Brady & Grover, 1997). This fall, the Australian government has drafted proposed legislation that permits the sterilization of women with intellectual disabilities without their consent (Multicultural Disability Advocacy Association of NSW, 2006; People with Disability Australia, 2006).

And finally, back in the United States, a recent news item on National Public Radio highlighted the situation of a young woman with mild cognitive disabilities who was denied a kidney transplant from the Oklahoma University Medical Center. According to the story, the Medical Center believes that she is unable to make decisions for herself, although she is competitively employed, has a boyfriend, and is actively engaged in a variety of community activities (Shapiro, 2006).

These stories frighten me. My daughter and I both have disabilities. Will we be denied access to basic medical care at some point in the future? Will my daughter be sterilized because she has a disability — because some physician thinks she can't make her own decisions?

The good news is that the United Nations General Assembly just adopted a "Convention on the Rights of Persons with Disabilities" (United Nations, 2006). The bad news is that, in spite of what is clearly important (if only potential) rhetoric, on-the-ground, in the real world of people's lives, across the globe, people with disabilities continue to be denied basic human rights.

The real question for me is this: what do these stories mean to me — to us — in the field of disability studies? How can I respond to them in real and pragmatic ways? How can my research influence policy, engage practice, create opportunity? Will those of us in academia — myself included — respond in ways that have a positive impact on the real lives of people?

I hope so, for the sake of all of us.


  • Brady, S., Briton, J., & Grover, S. (2001). The sterilization of girls and young women: Issues and Progress. Sydney, Australia: Human Rights and Equal Opportunity Commission.
  • Brady, S. & Grover, S. (1997). The sterilization of girls and young women in Australia: A legal, medical and social context. Sydney, Australia: Human Rights and Equal Opportunity Commission.
  • Gunther, D. & Diekema, D. (2006). Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Archives of Pediatric and Adolescent Medicine, 160, 1013-1017.
  • Multicultural Disability Advocacy Association of NSW (2006). Comments on draft model bill Children with Intellectual Disabilities (Regulation of Sterilization) Bill 2006. Retrieved on December 28, 2006 from http://www.mdaa.org.au/service/systemic/06/cidbill.html
  • People with Disability (2006). Sterilization of children with an intellectual disability. E-Bulletin, 35. Retrieved on December 28, 2006 from http://www.pwd.org.au/e-bulletin/pwd_e-bulletin_35.html
  • Sears, N. (2006). Outrage as Church backs calls for severely disabled babies to be killed at birth. Daily Mail, November 12, 2006. Retrieved on December 28, 2006 from http://www.dailymail.co.uk/pages/live/articles/news/news.html?in_article_id=416003&in_page_id=1770
  • Shapiro, J. (2006). Organ transplant discrimination. All Things Considered, National Public Radio, December 22, 2006. Retrieved on December 28, 2006 from http://www.npr.org/templates/story/story.php?storyId=6665577
  • United Nations (2006). Convention on the rights of persons with disabilities: Convention in brief. Retrieved on December 28, 2006 from http://www.un.org/disabilities/convention/convention.shtml

Copyright (c) 2007 Phil Smith

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