A note on language: I use both ‘identify-first’ (disabled person) and ‘people-first’ (person with a disability) language throughout this article because English-speaking disability advocates use (and request that other people use) one or both of these. People with disabilities are not a monolithic group, and different people have distinct preferences of how they would like to be referred to. For example, many people in the autistic community strongly prefer identity-first language (autstic person), while many people in the intellectual disability community strongly prefer person-first language (person with an intellectual disability). Even within these smaller communities, people have individual differences and preferences.
Introduction
The 2006 United Nations Convention on the Rights of Persons with Disabilities (CRPD) set forth legal and policy directives necessary to advance and protect the rights of persons with disabilities around the world; 184 countries have since ratified the agreement. The United States is one of six countries in the world who have chosen to sign, but not ratify, the CRPD. The U.S. signed the CRPD in 2009, and it has long made the claim that there is no need to ratify it because the U.S. is already acting in accordance with the international disability rights objectives laid out in the CRPD by implementing its requirements through existing domestic law–primarily, the 1990 Americans with Disabilities Act (ADA). However, there are two areas in which the U.S. falls well below the CRPD’s standards: (1) the right to reproductive autonomy, and (2) the right to legal capacity for people with disabilities.
The Right to Reproductive Autonomy and Legal Capacity under the CRPD
The right to reproductive autonomy is found in CRPD Article 25(a). It provides that States must “[p]rovide people with disabilities the same range, quality, and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health….” Article 25(d) explains that the delivery of this health care must be “on the basis of free and informed consent, by…raising awareness of human rights, dignity, and autonomy of the needs of persons with disabilities” amongst health care professionals. Central to sexual and reproductive health rights under the CRPD is the right of disabled people to make decisions regarding their own sexuality and reproduction. The right to choose to have children, to be free from forced sterilization, to not have children, to have access to safe abortion, to seek other reproductive care and to make decisions regarding that care are all important components of reproductive autonomy.
Working in tandem with Article 25 is Article 12, Equal recognition before the law. As Disability Rights International explains, Article 12 “recognizes the right of all persons with disabilities to make decisions, with legal effect, over their own lives – also known as the right to legal capacity.”
The Status of Reproductive Autonomy and Legal Capacity in the United States
Historical Context
Americans with intellectual disabilities have long been denied the right to make decisions about their own bodies. In its 1927 decision, Buck v. Bell, the U.S. Supreme Court upheld a Virginia statute that permitted the state to forcibly sterilize people it deemed to be “feeble-minded,” a statute passed in a eugenics-fueled effort to stop people with intellectual disabilities from reproducing.
Historians estimate that the ruling–which has never been overturned–led to 70,000 forced sterilizations of Americans with intellectual disabilities. Black, Indigenous, Latinx, and incarcerated people have been particularly harmed by it. As University of Michigan professor Dr. Alexandra Stern explained, “in North Carolina, which sterilized the third highest number of people in the United States – 7,600 people from 1929 to 1973 – women vastly outnumbered men and Black women were disproportionately sterilized,” at a rate of more than three times that of white women and more than twelve times that of white men. Between 1970 and 1976, Indian Health Service physicians forcibly sterilized Native women in extraordinarily high numbers. California did not formally prohibit the forced sterilization of incarcerated women until 2014.
Today
Starting with the Obama administration, the United States has maintained that the Americans with Disabilities Act (ADA) is consistent with the obligations under Article 25 and the CRPD as a whole. This position is grounded in the provisions of the ADA that prohibit discrimination on the basis of disability in health care programs, including those releated to sexual and reproductive health. However, U.S. guardianship laws render the right to reproductive autonomy elusive for countless Americans with intellectual disabilities, over whom plenary guardianship––the most restrictive form of guardianship, which completely strips an individual of their legal capacity–is habitually granted. The widespread continuation of plenary guardianship in the U.S. prevents many people with disabilities from exercising not only their right to legal capacity under Article 12, but also their right to reproductive autonomy under Article 25.
According to a report of the UN Special Rapporteur on the the rigths of persons with disabilities, reproductive autonomy is centered on the right to make decisions about sexual and reproductive health and to have those decisions respected. The report specifically identifies as problematic laws that “…allow judges, healthcare professionals, family members and guardians to decide over life-changing procedures on behalf of girls and young women with disabilities.” When a court places someone under plenary guardianship, the person loses their right to make decisions for themselves, and with it, the right to reproductive autonomy. In most states, guardians cannot unilaterally force people to undergo sterlization or abortion, however, those decisions can be made if a judge issues an order permitting them. Guardians can make the majority of decisions regarding contraception and other medical care without a court order. The refusal of Britney Spears’s conservator to allow her to remove her intrauterine device (IUD) is one high-profile example of how guardianship impacts the right to reproductive autonomy. Unfortunately, in the U.S., her experience is not unique.
Conclusion
Especially in the areas of reproductive autonomy and legal capacity, the rights of Americans with intellectual disabilities are not adequately protected by U.S. law. The U.S. continues to fail its women and gender nonconforming people with disabilities by its insistence that the CRPD’s objectives are embedded into existing law, and subsequently, by its continued refusal to join the 184 other countries in the world who are parties to the CRPD.
Author Biography: Elizabeth Schroeder is a moderator of the International Law and Policy Brief (ILPB) and a J.D. candidate at The George Washington University Law School. She has a Master’s of Education in Special Education from Vanderbilt University and a Bachelor’s of Science in Psychology from the University of North Carolina at Chapel Hill.