Interviewed by Lauren Blachowiak, Government Affairs Manager, Association of Maternal & Child Health Programs (AMCHP). This interview took place on February 22, 2022.
This interview discusses the results of a newly released report by the National Women’s Law Center (NWLC) entitled, Forced Sterilization of Disabled People in the United States. The report was led by Ma’ayan Anafi, Senior Counsel for Health Equity and Justice at the NWLC, and it was produced with support from the Autistic Women & Nonbinary Network. The report can be read in its entirety on the NWLC website.
To start us off, can you give a brief summary of the report, including what forced sterilization means, who it impacts, and where it happens?
So what we mean by forced sterilization here is sterilization that is done without someone’s consent. So that [includes] sterilization that happens to you against your will or without your knowledge, or without giving you a chance to say whether you want it or not. Even if the sterilization gets a judge’s approval, or if there are procedural safeguards, or if the sterilization is reportedly for your own good, if you haven’t given consent to be sterilized, then that is forced sterilization.
[For the report], we studied the laws that allow for sterilization of disabled people and what we found was that 31 states plus Washington, DC, have these laws in place. These laws aren’t relics from the past; these laws were actually passed as recently as 2019 in a couple of states. So, basically, these laws say that a judge can order a disabled person to be sterilized against their will, supposedly for their own good. This is really grounded in the assumption that disabled people, like me, can’t or shouldn’t make our own decisions about our bodies and that other people need to make those decisions for us. We know that assumption is wrong, and it’s dangerous, and it’s been used for years to justify the reproductive coercion of disabled people.
As to who it impacts, we don’t have a lot of data about who gets sterilized under these laws or how often they’re used. That kind of information is hidden from public oversight: cases are typically sealed and people who experience forced sterilization are never really given a chance to share their stories. Often, they’re actually prevented from doing that. What we do know is that the people most impacted by these laws are people with intellectual and developmental disabilities, specifically people who can get pregnant. That is the product of a long history, a long legacy, of undermining the rights of birthing people with intellectual and developmental disabilities.
Many AMCHP members do work that involves children and youth with disabilities and special health care needs. How do forced sterilization laws impact disabled children and youth?
Most of the states that allow for sterilization explicitly allow it for disabled children. So, out of the 31 states plus DC that allow for sterilization, 17 allow it on children, 3 explicitly prohibit it, and the rest don’t say one way or another, meaning that it’s not clear whether a court would allow a forced sterilization on a disabled child.
The fact that most of these states allow for the forced sterilization of children really shows how disabled children are seen in the eyes of the law, because all children have the capacity to grow and change with time. The way you make decisions and what you wanted when you were 14 years old, for example, is probably different from how you think today. But when it comes to disabled children, there is an assumption that they’ll never change, but will remain in this static, childlike state for the rest of their lives. [The laws in certain states infer] it’s okay to disregard their decision-making capacity and the desires they might have in the future, and permanently sterilize them.
What are guardianship and conservatorship, and how do they play a legal role in the forced sterilization of disabled people?
Guardianship, which is sometimes called conservatorship depending on the state, is a system where you have someone appointed by a judge to make decisions on your behalf. [It] differs from state to state on the details, but overall, these systems are massively overused and abused. Disabled people often lose many of their basic rights when they’re placed under guardianship. This can include everything from their rights to get married; to vote; to see their children; and to [choose] where they live, who they can associate with, and how they spend their money. And they can lose their rights to make decisions about what health care they get, and that includes sterilization.
The relationship between guardianship and forced sterilization differs from state to state. In some states, sterilization laws apply specifically to people who are already under guardianship; in these states, the guardian is usually the one who asks the courts to approve a sterilization. In other states, forced sterilization isn’t limited to people under guardianship; so, for example, a family member of someone who’s not under guardianship, or a doctor, or a caseworker, or someone else, can ask the courts to have the person sterilized. But in these states, people under guardianship or people who face the threat of guardianship seem more likely to be affected by these laws, so there’s a lot of overlap there.
In the report, you make the connection between current forced sterilization laws and the history of eugenics laws that disproportionately impacted Black, Indigenous, Hispanic, and other birthing people of color, both disabled and not. How does the issue of forced sterilization further perpetuate inequities?
Forced sterilization laws are part of a long legacy of controlling who can have children and who can have control over their bodies, and that is a deeply racist legacy that has targeted Black and Brown people, and it is a legacy that continues today. We don’t know whether the current forced sterilization laws disproportionately affect people of color because, again, that information is not made public. But we do know that embedded in these laws are the same racist and ableist narratives that were used to justify the forced sterilization of Black and Brown people in the eugenics era and in many other contexts.
We see the narrative that disabled people, and particularly Black and Brown disabled people, are a burden on their families and on the public, that they are a drain on resources, that having children is somehow a threat to society, and so they can’t or shouldn’t make their own decisions about their bodies, and that the state needs to make those decisions for them. Even outside of forced sterilization laws, we know that Black and Brown disabled women are more likely to be pressured or coerced into undergoing a sterilization. We saw the way that Black and Brown women were targeted when California prisons sterilized thousands of incarcerated women in the early 2000s. We saw that when it was recently revealed that women in a Georgia immigration detention center were being coercively sterilized. We [also] see that in routine interactions with some health care providers, where providers are more likely to direct Black and Brown disabled women, or even pressure them, to be sterilized. So, it’s impossible to separate forced sterilization laws from these realities and these pervasive beliefs about disabled people, and about Black and Brown people, and particularly about Black and Brown disabled people. This really calls for centering Black and Brown disabled people, creating space for them to share their experiences, and following their lead in changing these laws.
What does forced sterilization tell us about the greater injustices and barriers disabled people face to having autonomy over their own reproductive choices, such as accessing sex education or birth control, and control over their lives more generally?
Forced sterilization is just one example of ways that disabled people are denied reproductive rights and control over their bodies and their futures. It’s part of a bigger pattern. For example, disabled people face unique barriers to accessing things like birth control. Sometimes it’s because health care providers don’t know how to interact with disabled people, or they make assumptions that disabled people are asexual or can’t understand their bodies, or they can’t make their own decisions. Also, disabled people are often outright excluded from sex education, and, even if they’re nominally included, the sex education they receive rarely reflects their needs and experiences as disabled people. And when [disabled people] have children, they often run the risk of losing custody of their children simply because they are disabled.
These problems are especially pronounced for people under guardianship because guardians have such sweeping powers over disabled peoples’ lives. Often, guardians can prevent someone from using birth control or from getting an abortion, and they can do that without needing any special approval from a judge. We saw in the Britney Spears case last summer that a guardian might be able to force someone to use birth control or prevent them from seeing their children. When someone is under guardianship, they can experience a really profound loss of so many basic rights, including reproductive rights.
Finally, what is your desired outcome with publishing this report? Who do you hope it reaches, and what do you hope it changes?
First and foremost, we need to change the narratives that have been used to justify or ignore forced sterilization. We need to change the idea that disabled people shouldn’t control their bodies, that laws forcing them to be sterilized are somehow necessary or even benevolent. We need to challenge the assumption that disabled people can’t make [their] own decisions and that [they] can’t understand [their] bodies. Some people might need particular support in order to make decisions about sterilization, but that just means that they should get to make those decisions with support; it doesn’t mean that they should lose that fundamental right.
We also need policy change. We need laws that recognize that disabled people have the right to make decisions about their bodies and being sterilized. We need to make sure that everyone has the tools and supports they need to make decisions about sterilization, which includes making sure that disabled people who want a sterilization can get access to it. [And we also need to make sure] that no one is sterilized without their consent. As I mentioned, one of the components of policy change really needs to be a large-scale reform of the guardianship system. Not everyone who might be sterilized under these laws is under guardianship, but in many ways the guardianship system allows these laws to exist. The guardianship system, in general, is a really powerful tool for depriving disabled people of their reproductive rights and bodily autonomy, including the right to make decisions about abortion, birth control, and health care more broadly, so guardianship needs to be a key part of the solution, too.
To learn more, read the full report Forced Sterilization of Disabled People in the United States.