Nothing brought Olivia more joy than when her daughter and grandchild visited her group home in Brooklyn in the early 2000s. Each hug and shared laugh lit up her face with pride like any mother’s, grounded in love, family, and connection.
Olivia’s story should not be remarkable, but history almost denied her the chance to experience her family. For more than a century, Americans with intellectual and developmental disabilities (I/DD), like Olivia, were subject to forced sterilization — a brutal legacy of eugenics aimed at erasing their place in our communities and families.
While we have made strides to protect the bodily autonomy of people with disabilities, their rights are once again at risk due to new guidance issued by the American Academy of Pediatrics (AAP) suggesting that sterilization should be considered among treatment options for children, adolescents, and young adults with I/DD. It has sent shock waves through the diverse community of carers and advocates. While the guidelines address various considerations and emphasize the importance of carefully evaluating each case, even the suggestion that it could be reasonable in limited numbers of cases could have serious, even deadly, consequences, especially when used by under-resourced caregivers and already burdened health care providers.
The AAP’s clinical report, titled “Examining Permanent Contraception for Children, Adolescents, and Young Adults With Intellectual Developmental Disorder: Ethical, Legal, and Medical Considerations,” recognizes the grim history of forced sterilization and advocates for long-term reversible methods of contraception, noting that access to permanent contraception for minors with I/DD has been severely limited because they are “a vulnerable population, still at risk for mistreatment, abuse, and marginalization.”
However, the guidance leaves the door open for surrogates to be the first to choose permanent contraception for children, adolescents, and young adults, “if reversible methods have been attempted and found unsatisfactory to meet the needs of the patient.”
That might sound reasonable on its face if you are unfamiliar with this world, but sterilization should never be considered for anyone — whether they are neurotypical or have I/DD —unless they are able to fully consent to the procedure. The report endorses a troubling approach to reproductive health that could pave the way for further marginalization and exploitation of people with disabilities.
Jason Michael Morgan, an adult with developmental disabilities, never had the opportunity for a family, as he was forcefully sterilized in his 20s. Jason’s father, his plenary guardian, took him to a doctor who completed the procedure without his consent. When confronted by Jason’s mother, Jason’s father replied that “he wanted no more abominations in this world.”
The law in Michigan, where Jason resided, requires guardians to have court approval for “extraordinary procedures” and the doctor who performed the surgery incorrectly believed that the consent of Jason’s father was adequate. The case was settled out of court, but it sparked a broader discussion about involuntary sterilization, particularly among people with I/DD.
The AAP’s recommendation that “permanent contraception may be considered as one option” not only paves the way for more tragedies like Jason’s but also fundamentally undermines the rights of people with disabilities.
Throughout my 27-plus years in the field, I’ve advocated for the rights of people with I/DD nationally and internationally. I work as a mental health clinician and lead trainer at YAI, a nonprofit that supports people with I/DD in New York, New Jersey, and parts of California. I’ve helped develop sexual health policies, trainings, and curricula that educate professionals, caregivers, and people with I/DD.
Many guardians and caregivers may see sterilization as a way to protect young women and girls with I/DD from getting pregnant from sexual assault. The danger is with sex-negative views and biases from pediatricians who are not trained effectively to treat people with I/DD. They may present sterilization as the first option to caregivers seeking their guidance, when in fact it shouldn’t even be an option at all.
But new research by my colleague, professor Natalie M. Chin of CUNY Law School, shows that it’s not a simple answer. She found that “sterilization is not a panacea to protect people with intellectual and developmental disabilities from sexual violence.” Instead, her research shows, education is the key to prevention of abuses and teaches love of self, self-advocacy, victimization avoidance, ways of relating to self and others, consent, and socially acceptable behavior.
Almost all people (90%) with I/DD will experience sexual abuse at some point in their lives, half of whom 10 or more times. An average of 59,000 U.S. adults with disabilities are raped or sexually assaulted each year. Despite these staggering statistics, only three states in the country have laws that mandate sex education for people with I/DD.
Denying people with I/DD, especially children, adolescents and young adults, the opportunity to learn about and explore their social-sexual needs with appropriate education and support can result in depression, anxiety, loneliness, at-risk behaviors, poor decision-making, and atypical sexual behaviors.
Comprehensive sexual education, accessible health care, and protective measures against abuse are crucial components of a compassionate and just approach to reproductive health. Beyond just sexuality, this education provides access to sexual and reproductive healthcare needs, such as Pap smears and cervical cancer screenings, resulting in better health outcomes.
The AAP report rightly highlights the necessity of addressing the complex reproductive health needs of people with disabilities, including concerns about sex, sexuality, menstruation, and the risk of sexual abuse. However, the emphasis should be on empowering people with I/DD, their families and medical professionals with the education to make informed choices and practice sound and ethical medicine, rather than questionable procedures from darker times.
Instead of reverting to the past to even contemplate permanent contraception, we should be investing in education, resources, skill development, and support systems that empower people with I/DD and their families. One of my greatest joys is seeing the people I’ve supported enjoying the company of their children and even grandchildren, evidence of lives lived fully and meaningfully. This is what we should celebrate, not erase. Involuntary sterilization is akin to using the “R” word — it should never even cross your mind.
Consuelo Senior is a mental health clinician and sexuality and disability expert with over 27 years of experience in neurodevelopmental disabilities and mental health.