Some states allow people to be sterilized against their will

Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. Until 1979 in California, thousands of people living in state-run hospitals, homes, and institutions were involuntarily sterilized. Later it was found that forced or coerced sterilizations continued to be performed on people in custody at state prisons or other correctional facilities. Today I'm talking with sociologist Jennifer James, who is conducting community-based research on these forced sterilizations and who is visiting Upstate for a bioethics lecture. She's an associate professor in the Institute for Health and Aging and the bioethics program at the University of California, San Francisco. Welcome to "The Informed Patient", Dr. James.

Jennifer James, PhD: Thank for having me.

Host Amber Smith: Can you start by tracing for us the history of family and reproductive control in the United States?

Jennifer James, PhD: Absolutely. Family and reproductive control has, I think, been a really central feature of the history of the United States. We don't often talk about it this way, but if you think back to slavery, it was fairly eugenic in its practice, right? Different enslaved people were paired together, forced to reproduce, not for their own family formation, not to have children, but really for the economic increase of their slave owners, right? So we've always used reproduction as a way of increasing capitalism and wealth.

We can think about forced family separation through things like residential homes that happened to native groups across our country as we took children away from their parents, under the idea they were not fit to raise them under the goals of our society that we were creating in the United States. We can think of forced family separation at the border in sort of our modern era. And then of course the eugenics era that you mentioned, which in the first half of the 20th century, estimates are somewhere around 60,000 people were forcibly or coercively sterilized while in state institutions, mostly folks with disabilities, but not exclusively. It was also used as a form of punishment for many sort of perceived or wrongdoings at the time.

Host Amber Smith: Now this, you're talking about what was happening in California. Was it happening in other states as well?

Jennifer James, PhD: Oh, absolutely. So something like 30 states had compulsory sterilization laws. California's eugenics program, which ran from 1909 to 1979 was, based on what we know -- there aren't always great records -- the most prolific. So we sterilized about 20,000 people in state institutions in California. But in total across the country, 60,000 people were sterilized. So it happened in many, many states across the country.

Host Amber Smith: You said eugenics program. Can you define what that is?

Jennifer James, PhD: When we think about eugenics today, it's a bad, scary word. It's a thing we don't like -- not all of us, but many of us -- I at least feel that way.

But it was eugenics programs started, were very, very popular. Some of our most prominent leaders and philanthropists, presidents of universities across our country really took up eugenic ideology. And so states had eugenics programs. There were often offices, departments that were running eugenics. And this came in several forms.

Some are what we think of as positive eugenics. So there were better family campaigns. There were contests to see who made sort of the cutest babies. There were policies to try to get people to have more children who were sort of seen as fit, fit families, right, which mostly meant white, Protestant, upper middle class.

But we also have what we think of as eugenics, which were programs intended to sterilize people who were undesirable. So people who were developmentally disabled, had other forms of disabilities, had mental illness, who'd been convicted of crimes. But it's also important to remember that all of this was socially constructed at the time. It's not just that there were certain people who in 1930 we thought weren't worthy of having children and maybe we might not have done that today. It's many people who maybe they had a diagnosis or those are diagnoses we don't use anymore. Like what is, someone who, a lot of these were called homes for the feeble-minded, which is not a diagnostic category we use anymore.

We constructed reasons why different groups of people who, for whatever reason, were undesirable in our society, were not fit to reproduce and in really large scale then activated programs to sterilize them, so they were unable to have children.

Host Amber Smith: Now, supposedly this stopped in 1979 in California, but it actually was continuing in prisons and correctional facilities. Is that the case in other states as well? Is this still going on in places?

Jennifer James, PhD: I'll tell you a little bit about what we know about California and then what we do and don't know about other states.

So, California's eugenics program, the law was officially repealed in 1979, but it really slowed down, stopped quite a bit in the 1950s, which is true across most states. Most states, it really slowed down after sort of World War II. We stopped doing as much formal eugenics programming.

But what brought it to light, the reason that our program was rescinded in the 1970s was because people were being forcibly sterilized in hospitals after having babies in California. So it came to light that what was at the time LA County USC Medical Center in Southern California, at least 200 mostly women of Mexican descent, many of whom did not speak English, were forcibly sterilized in the 1970s. They had tremendous advocacy, brought lawsuits and brought this to light to the point that in our state, it was introduced a law to repeal the eugenics law. So that was no longer on the books.

Over time, our state sort of acknowledged this. We had a formal apology that was issued, saying that this was a practice we shouldn't do. But then it came to light in 2013 that at the time when this article came out in the Center for Investigative Reporting, at least 144 women who were incarcerated in California state prisons have been undergoing tubal ligations.

Tubal ligation is commonly known as having your tubes tied. It's a procedure where your fallopian tubes are cut off, or tied off, or otherwise made so you're not able to have children. It's a procedure that's only done to sterilize. There's lots of types of procedures that sterilize people. It's the only reason you do this is to not have children. It's for purposes of birth control. It's a procedure that our prison system said they were not doing in our state. They said it wasn't medically necessary and there were certain approvals that were supposed to be happening in addition to informed consent before someone had this procedure, and that wasn't being followed. So this came to light, and we realized that this was still happening en masse.

But in answer to your question of is this happening in other places? Yes. So in 2020, it came to light that at Irwin (County) Detention Center in Ocilla, Georgia, a nurse named Dawn Wooten came forward as a whistleblower and said that forced hysterectomies were happening to people who were being detained at an ICE (Immigration and Customs Enforcement) detention center in Georgia.

And really we don't know how often this happens across the country. There continue to be judges who offer sterilization in exchange for lesser jail time or as an alternative to jail time. There continue to be bills introduced across the country. There was one introduced in West Virginia a couple years ago.

Host Amber Smith: There have been bills introduced in Louisiana and Texas and other states of folks who are trying to either have sterilization in exchange for less jail time or with certain offenses or things like mandating castration, which is still a practice in many states after certain people are convicted of certain crimes. So we don't actually have good data to know how many people are having sterilizing procedures while incarcerated, and we really don't know how many of those are happening with true informed consent.

This is Upstate's "the Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with sociologist Jen James from the University of California at San Francisco, who is visiting the Upstate campus for a bioethics lecture.

Host Amber Smith: So I want to talk about your community-based research. Why did California allow involuntary sterilizations, to begin with?

Jennifer James, PhD: That's a tough question. Do you mean in the prison era, like sort of more recently, or ever in the past?

Host Amber Smith: Well, why is it used at all? Like, what is the thinking behind it? Why would you want to not allow someone to have children?

Jennifer James, PhD: That's a really hard question because I see the right to have children, to not have children, to raise those children in a healthy and safe environment -- this is what we know as reproductive justice -- as really central. I think we should all feel that people should have the right to decide what their family looks like. But as I mentioned, that's never really been a feature of American politics, American social organizing.

We've always had feelings that people who are marginalized in whatever way shouldn't have children. We see this in our discourse. We have this idea as of welfare moms, of the absent father, of people who have more children than they can take care of. You know, this idea that some people should have children, and some people shouldn't, that we should prevent certain groups from having children or incentivize others to have more children has been a constant feature.

And I think in the time of the eugenics era in the early 20th century, there was science -- I'm using scare quotes -- but it was a science of eugenics with this idea of like certain traits are with different ideas of what's a heritable trait or not.

So I think most of us today don't necessarily think about something like criminality as being heritable. The fact that your parents committed a crime, we don't think that there's a gene that predicts that I will do that. But, I think many of us do think that certain communities are more likely to commit crimes than others. So even if we don't think I can sort of stop this problem via stopping a bad gene that's out there -- as sort of was the idea or the concept in the early 20th century -- I might still think it might be better for communities if we have fewer children. If people who can't take care of them, quote unquote, or we don't think are fit parents are not continuing to reproduce.

So at the time that this came to light in California, a reporter who was investigating it spoke with a physician who worked in the Department of Corrections and asked him about, the state spent this amount of money on this procedure it said it wasn't supposed to be doing. The doctor's response was, that's not a lot of money when you compare to what you save in welfare, when they keep procreating more. So this really ideology that the babies that are produced by folks who have this history or from these communities are going to be a burden on our state, I think still drives a lot of our social policy, even when it isn't accompanied by forced sterilization.

Compulsory sterilization, forced sterilization, is still on the books. In more than 30 states still have laws that allow people to be forcibly sterilized. Now, we have very few formal programs for this, the way we did in the eugenics era, but the laws haven't changed in most of the country. It's still allowed. And many of those states, I think like two thirds, allow forced sterilization of minors, so of children with disabilities to have their reproductive capacity taken away, obviously without their consent since they're children.

So this is an incredibly important civil rights issue. My research is really focused on it in the context of incarceration, but as a disability justice issue, this is huge. We still routinely have the capacity in most of our country to take away the rights of disabled people from having children, and that's something we really need to be aware of and fight against.

Host Amber Smith: Were the forced sterilizations of incarcerated people, were they all women, or were there some men too that were sterilized?

Jennifer James, PhD: So what we know about this, we'll never know the total number of people who were forcibly sterilized in the state. So when this came to light in 2013, the state performed an audit. They looked back at how many, they looked at all sterilizing procedures of people incarcerated in women's facilities from fiscal year 2005-2006 to 2012-2013, they verified that there were 144 tubal ligations performed, many of which did not have proper documentation of informed consent and none of which followed the state approval processes that were supposed to happen. But they identified 800 people who had some kind of sterilizing procedure during that time.

Other investigations that have happened have indicated more than several thousand upwards of 1,700 people who were sterilized from sort of the 1990s into this mid 20-teens period.

And obviously there's lots of reasons to have sterilizing procedures. Many people need to have hysterectomies. There's many conditions where that's required. But what's challenging is we don't know how many of those people had proper informed consent or how many of these were medically necessary procedures. Many people have come forward and said that they were told they had cancer, and they did not. Or they were only offered the opportunity, that they had a health condition and the only thing they were offered was a hysterectomy. For something like a heavy period, standard of care would be to prescribe birth control or do another method that does not end in permanent sterilization to see if that works first to alleviate symptoms.

So we don't really know how many sterilizations took place in California. And of those, how many involved proper informed consent. Most of what we know is focused on the women's prisons. I do know that there are some, I have seen record of some trans women who were incarcerated in men's prisons, who also were forcibly sterilized. But what's hard is, there hasn't been an audit. There was never an audit performed of the men's prisons. We don't know how many people this might have happened to there. And one sort of explicit carve out in creating exceptions to banning sterilizing procedures has been as punishment for crime.

So potentially different forms of castration are still allowed in our state as a punishment for crime and isn't sort of viewed in the same way, even though it can have a similar effect.

Host Amber Smith: Do I understand correctly, some of the women who were sterilized may not have even known that that happened to them, that they thought that something else was being done, and they were sterilized?

Jennifer James, PhD: That is correct.

Host Amber Smith: Wow.

Jennifer James, PhD: That's correct. So there were many people who had, there were people who had tubal ligations that happened after a C-section, a C-section which might not have been medically necessary. And maybe they signed a paper while they were under anesthesia, but they, nobody told them, they didn't know. So people sort of never knew this happened to them, might still not know that this happened to them.

There was many people -- many people I've interviewed or collaborated with through my community-based work -- who knew they had a surgery, were not told what the surgery was, or it was not explained to them the extent of the surgery or what the outcomes of the surgery would be, and ended up going into menopause. They sort of experienced, like, all of a sudden I was having night sweats. My hormones were out of whack. I was having all these mood swings. I was losing weight or gaining weight, feeling awful. And some of them didn't know why for years until they were told that it was, that they were in menopause because of having their ovaries removed. Nobody ever told them that that would happen.

Host Amber Smith: Now California is compensating some of these victims, is that right? How does that work?

Jennifer James, PhD: That's correct, yeah. So we have had a compensation program for survivors of forced sterilization. This bill was passed in 2021, and the program ran 2022 and 2023.

There's been a couple other states that have provided compensation. I'm trying to remember, it's North Carolina and -- shoot. One of the Virginias. Which Virginia is it? I can't remember if it's Virginia or West Virginia off the top of my head -- but other states have done this for survivors from the eugenics era. But this is really the first time this has happened for survivors who've been forcibly sterilized in carceral institutions.

The bill, when the bill passed, so it was for both of these groups, people had two years to come forward and apply and find out if they were deemed eligible for compensation, which is a really short period of time, noting that these are really vulnerable groups. Folks from the eugenics era, many of those are very elderly, right? If you were sterilized in 1930, you're very elderly at this point. Lots of folks who don't speak English. Many folks of people of color. Many people with disabilities. And a lot of people who justifiably don't really trust the state. So only two years to come forward on a procedure you may or may not know has happened to you is pretty short.

And people who were deemed eligible received $35,000 from the state, which of course is not a significant amount of money in terms of giving back what you lost in terms of your productive capacity. But it's a really, I think, important symbol of the state sort of taking ownership over the harm that was perpetuated.

Host Amber Smith: Well, let me ask you, because I know this is your research area, what type of health care can people who are incarcerated expect to receive? Because some people that are incarcerated have chronic health conditions. Is that going to be taken care of while they're behind bars?

Jennifer James, PhD: You mentioned that people who are incarcerated have chronic health conditions. I mean, people who are incarcerated before, during, and after incarceration -- because of the communities we've targeted with our policies for incarceration -- are, they're sicker when they go in, they're sick while they're there, and they're sicker when they leave. So higher rates of chronic illness, mental illness, substance use disorder, infectious diseases in the general population. We also -- because of our long history of long sentences, life without the possibility of parole, historic three strikes laws -- we have a really aging prison population. So by 2030, more than a third of people who are incarcerated are going to be over the age of 55.

So we're only having a growing number of folks who are incarcerated with chronic illness. Since the 1970s, there was a Supreme Court case, Estel v Gamble, that sort of established that deliberate indifference, so intentionally ignoring someone's serious medical need was, considered to be cruel and unusual punishment. So since that time, all prisons and jails in our country provide some form of health care because to ignore someone's health care is considered a form of torture, considered cruel and unusual punishment. But what that looks like varies really widely.

So my state of California has been under federal receivership for our health care for a long time. So that means we had several class action lawsuits in the 90s and early 2000s of people coming forward saying their care was negligent. They were not getting good care inside. And the court said, you need to do better. The state didn't do better fast enough. So the federal judges put a process in place to oversee our health care system, which has meant that we have more access to health care in California than I think folks have in other places.

But in general, many people experience poor health care inside. I think that that varies based on the capability of the institution. Smaller jails have less health care than big prison systems do. And a lot of times there's really structural barriers to care. So in many institutions, correctional officers serve as gatekeepers to care. They have to believe that you're sick enough to need to see somebody. Those aren't people with medical training. And the violent nature of prisons makes that really complicated. Many people have really a justified mistrust of the system that's incarcerating them. So coming forward for health care is really hard.

Many, many states still have copays, so people have to pay $5 to see a health care provider, which doesn't sound like a lot, but in a lot of states, the minimum wage for work is 8 cents an hour. So $5 is a pretty significant portion of your wages, especially considering in many states you have to pay for things like period products, you have to pay for things like toothpaste. It's really hard to take care of your health inside. And of course anytime you're making decisions about your health, sort of without family, without community, without access to the internet, it's going to be really hard to make informed decisions that are best for your care based on this sort of structural conditions of the prison setting.

Host Amber Smith: Well, thanks for educating us. I was not aware of any of this, so thank you for bringing it to light. I appreciate you making time to talk with us about this during your time here at Upstate.

Jennifer James, PhD: Of course. Thanks for having me.

Host Amber Smith: My guest has been Dr. Jen James. She's an associate professor in the Institute for Health and Aging and the bioethics program at the University of California, San Francisco. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe with sound engineering by Bill Broeckel and graphic design by Dan Cameron. Find our archive of previous episodes at upstate.edu/informed. If you enjoyed this episode, please invite a friend to listen. You can also rate and review "The Informed Patient" podcast on Spotify, Apple Podcasts, YouTube, or wherever you tune in. This is your host, Amber Smith, thanking you for listening.