LDUCPC-SOHO P.6

Gold IUD and Uterus, UCL Pathology Collections, 1945-1988.

Contraception remains a controversial topic in relation to disabled adults, becoming a more contentious debate when those with intellectual disabilities are involved. Several countries including the UK, by law regulate contraceptive practices for women with intellectual disabilities. Though this complies with the Universal Declaration of Human Rights, many have criticized the approach medical professions and governments have taken (Greenwood and Wilkinson, 2013). More often than not, the rights of people and especially women with intellectual disabilities can be supplanted by the interests of carers or family members. Although these practices are no longer used for eugenic purposes, hysterectomies and involuntary administration of contraceptives (usually implants) continue to be performed for menstrual management globally. Women with intellectual disabilities in Europe are three times more likely to be sterilized than their non-disabled counterpart (Miller and Levine, 2013). Although there have been successful lawsuits in the USA, Canada, and Australia spanning the 1970-90s attributing the reproductive right to agency of the individual women over the wishes of their family or carers, typically medical professionals weight the family or carer’s wishes above those of the person with disabilities (Roy et al. 2012).  

This medical and legal bias against disabled people is in some part due to disabled people being excluded from academia which often influence the policies, legislation and public perception and option of disability. To counter this, many disability activist groups have mounted projects and drives to educate both public and private agencies, about the facts around disability and the legal rights disabled people should be afforded. This has included the targeting of academic and medical institutions (Pfeiffer, 1994). Geneticists and medical professionals should recognize the implications that their research can have on those with disabilities, as well as acknowledging historical trauma that the eugenics movement has caused to these communities. They should seek to involve people with disabilities in discussions about policies and medical practices that affect them (Miller and Levine, 2013). 

The reproductive rights of disabled people are often restricted through sterilization, usually through "permanent"/long term contraceptive means such as IUDs. But of greater concern is a global trend of medical recommendations for the termination of "defective" foetuses, based on chances of disability not necessarily viability. One of the most well publicised examples of this is the prevalence of termination of Down's syndrome foetuses in Iceland and Denmark with more than 95% of parents choosing to abort foetuses which test positive in prenatal Down’s syndrome screenings (Quinones and Lajka, 2017; Zhang, 2020). Many disability activists, Down’s syndrome groups and disabled individuals have argued that this trend of terminating disabled foetuses, often on the advice of medical professionals, is paramount to genetic genocide (Miller and Levine, 2013). Similarly, suggesting that when an impairment causes minimal health problems or "suffering," the health-care and medical community must recognize that judgments regarding "quality of life" must be made by the disabled individual, not researchers, clinicians or even family members/carers (Greenwood and Wilkinson, 2013). These practices have bought to light the discussion around who has the "right" to choose what "kinds" of people deserve to reproduce as well as be born in our society (Pfeiffer, 1994; Roy et al. 2012). Even though, this means a more complex and nuanced decision-making progress, this approach is favourable to the uniform approach of "eradicating" or "curing" all disability (Miller and Levine, 2013; Greenwood and Wilkinson, 2013). 

To conclude, despite the eugenics movement generally having been discredited and rejected by the scientific community, the ideology and effect the research has had on science and specifically the medical profession runs deep. The result and real-world application is more subtle than the legislation and practices of the past. The argument can be made that this form of "soft eugenics" is still effecting many demographics today not only in "developing" or "conservative" countries but in arguably, "educated" and "liberal" countries. The sterilization of people with intellectual disability, in addition to the prevalence of termination of foetuses who have a high chance of disability, can be seen as an indirect consequence of the eugenics movement. These links between population control, and advances in central genetic developments, highlight that the darker uses of eugenics are not necessarily a thing of the past. Removing the agency and right to have children under the reasoning of "kindness" and "quality of life" of the individual and their families/careers is neither an ideology nor a practice that belongs in the inclusive society we strive for. 

By Sophia Roy

Works cited

Engelman, Peter. A History of the Birth Control Movement in America. Online: ABC-CLIO. 

Fendley, Caitlin. 2020. Eugenics is trending. That’s a problem. The Washington Post. 17 February. Available at: https://www.washingtonpost.com/outlook/2020/02/17/eugenics-is-trending-thats-problem/.  

Greenwood, Nechama W., and Wilkinson, Joanne. 2013. Sexual and reproductive health care for women with intellectual disabilities: a primary care perspective. International Journal of Family Medicine: 1-8. DOI: 10.1155/2013/642472

Miller, Paul S., and Levine, Rebecca L. 2013. Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities. Genetics in Medicine 15 (2): 95-102. DOI: 10.1038/gim.2012.102

Margulies, Lazar. 1975. History of Intrauterine Devices. Bulletin of the New York Academy of Medicine 51(5):662-667. 

Pfeiffer, David. 1994. Eugenics and disability discrimination. Disability & Society 9(4): 481-499. DOI: 10.1080/09687599466780471

Roy, Ashwin., Roy, Ameeta., and Roy, Meera. 2012. The human rights of women with intellectual disability. Journal of the Royal Society of Medicine 105(9):384-389. 

Quinones, Julian., and Lajka, Arijeta. 2017. 'What Kind of Society Do You Want to Live In?’ Inside the Country Where Down Syndrome Is Disappearing. CBS News. 14 August. Available at: https://www.cbsnews.com/news/down-syndrome-iceland/. 

Zhang, Sarah. 2020. The Last Children of Down Syndrome. The Atlantic. December. Available at: https://www.theatlantic.com/magazine/archive/2020/12/the-last-children-of-down-syndrome/616928/.