One in six women experience mistreatment during childbirth. Birth justice attorney Indra Lusero talks to Adriana Lozada about how to defend your and other pregnant people’s birth rights.
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Related Birthful episodes:
- Informed Consent in Childbirth, with Cristen Pascucci
- Know What You’re Up Against When Giving Birth at a Hospital, with Mimi Niles
- How to Have a Great Hospital Birth
- Eight Questions to Ask Your Care Provider
- Why You and Your Care Provider Must Decide Everything Together, with Brad Bootstaylor
- Elephant Circle
- Refusal of Medically Recommended Treatment During Pregnancy, ACOG Committee Opinion
- Birth Rights: A resource for everyday people to defend human rights during labor and birth, by Birth Rights Bar Association and National Advocates for Pregnant Women (available in English and in Spanish)
- Giving Voice to Mothers survey, Birth Place Lab
- Reproductive Justice, SisterSong
- Universal Rights in Giving Birth, Lamaze
- How to Advocate for Yourself in the Delivery Room, New York Times
- Know Your Rights: Everything You Need to Know About Hospital Birth During the Pandemic, Parents
- Want to Know Your Rights during Labor and Delivery? Read This. The Swaddle
- Pregnancy and Childbirth Rights, Georgia Birth Advocacy Coalition
- Human Rights in Childbirth website
- Know Your Rights course, Birth Monopoly
- Shared Decision-Making (SDM) pledge, Birthful
- Use your B.R.A.I.N. for informed decision-making, Birthful
One thing you can do for you is to download the incredible BIRTH RIGHTS resource put together by the Birth Rights Bar Association and the National Advocates for Pregnant Women. They’ve created versions in both English and Spanish, and you can find them at birthrightsbar.org.
The one thing you can do for the rest of us is to amplify and support the Birth Equity Bill package that Elephant Circle has been working to make into law in Colorado. Go to Elephant Circle’s website to learn more and while there, take a look at their events page and the many other resources related to birth justice.
How to Stand Up for Your Birth Rights
Indra Lusero: The violation isn’t usually in a short amount of time, partly because it’s like days after, where you’re kind of grappling with what happened, and what could I have done, and how did that go down, and how did I let that go down? So, I think bringing yourself close, as a witness of yourself, it has long-term benefits.
Adriana Lozada: That’s birth justice attorney, Indra Wood Lusero, talking about how sometimes it can be really hard to realize that your rights are being violated. In this episode, we talk about your rights during birth and what are some of the most common mistreatments or violations of those rights. Indra also shares some of the ways you and your team can stand up for you, as well as what you can do after the fact if you experience a violation. I’m Adriana Lozada and you’re listening to Birthful, here to inform your intuition.
Welcome, Indra. I am so delighted to have you here and to finally get connected with you. The work that you do is incredibly important and I’m excited to share it with my listeners. Can you, to start us off, tell us a little bit about yourself and tell us how do you identify?
Lusero: So, maybe first and foremost, I identify as being from this region, which is the Rocky Mountain West is one way to put it. My family goes back many generations in the Northern New Mexico/Southern Colorado area, so I identify as Latinx, and really specifically from this particular region, which is… It’s got its particular history. I also identify as queer and gender queer. Those are critical to how I move in the world and see the world. And I’m a parent, and a parent of teenagers, young adults. And also, a birth justice attorney. Those are some of the most important things.
Lozada: And now, you say you are a birth justice attorney. What does that mean and how did you become one? Why?
Lusero: Yeah. Really, it was after the birth of my children. My oldest, I didn’t give birth to, so I got to be in that support person role and experience what birth was like from that vantage point, and he had what I think I would describe as an optimal hospital birth. And then I gave birth at home, so getting to see both of those, and the difference between them, got me very, very, very curious about what was going on to create those differences and certainly why were so few people having the experience that I had in giving birth at home.
So, you know, I was curious about the structures, so that led me to go to law school, to learn more, to figure that out, to defend midwives. So, as a birth justice attorney, I use that word to signify being rooted in the reproductive justice movement. I was doing work in that way and in that field before going to law school. And so, I bring that to how I do legal inquiry and legal work.
Lozada: Which we are so thankful for because that’s a scope that I don’t see many people jumping into, and it’s so incredibly necessary because as you’re pointing out, birth is a human’s rights issue and why we’re having this conversation today about people knowing and understanding their birth rights and how important that is. So, can we talk a little bit about what are some of these birth rights for the birthing person, or for anybody, during labor and birth?
Lusero: I mean, I think even to understand how to answer that question, you have to think about what are laws even. What are rights? And I definitely believe in the idea that there are a set of rights that emanate from our being alive and inhabiting the planet together. So, those are human rights that are considered not necessarily written down anywhere, but just everybody’s got them. And what I think is interesting about that is that people feel it in their gut. People know. If they observe people being mistreated or violated in a way that really compromises that internal sense of human rights, people know it. And I encourage folks to have that and use that. That is legitimate knowledge and information about what your rights are.
And then there’s the written down stuff and the codified rights. The laws that somebody’s thought of. And there are those that are really relevant in birth, like informed consent. In the United States context in particular, that’s probably the foundational right in this area, and it comes out of, actually grows out of the fact that it didn’t used to be that way. There was a long time in the provision of medical care in particular where the medical provider was assumed to have exceptional and special information, and they didn’t even necessarily need to share that with their patients. They didn’t necessarily have any duty to tell people what they were doing or get consent. But of course, that bumped into some things. Some of the early case law has to do with times surgeons would operate on people because they were like, “Well, gosh. We went in here thinking we were gonna find a tumor over in your kidney, but hey, we found this tumor somewhere else, so we just took out the whole thing.”
So, of course people started bringing lawsuits, like, “Whoa, not only did I not say you could go in there, inside my body, and take out a thing, but then I had these massive consequences to live with.” So, early case law said you know what, actually, hey, doctors, you should tell people what you’re gonna do and share some of that expertise, and you should actually give them a choice. There’s actually some dynamic relationship here between your expertise and their ability to determine what they want for their body.
And you know, that law develops through cases being brought. So, because of power dynamics that exist in society, not everybody can bring a case, so not all the issues ever get seen before a court. So, for many, many years, there weren’t any cases related to consent in pregnancy. So, to some extent still, some of these laws, when people ask me, “What are my rights?” They’re based on cases that are analogous, but maybe not exactly spot on.
Lozada: Right. And you have this amazing resource called BIRTH RIGHTS, and I want to make sure I get the title right. BIRTH RIGHTS, a resource for everyday people to defend human rights during labor and birth, which… It blew me away when I looked at it and I’m sure we’ll link it in the show notes. And there’s a very beautiful graphic on page 13 that says some of the rights you have the rights to, right? So, I have the right to know all my options; the right to have my basic needs met; the right not to be touched; to ask people to leave; feed my baby human milk; change doctors, midwives, or nurses; leave the hospital or birth center; say no and be heard. And a lot of these tied to that informed consent. Can we suss out what the definition of informed consent is? Because there’s a lot in there.
Lusero: Yeah. True. So, legally the definition has two parts. Number one is information. You know, you need to actually have reasonable information upon which to base a decision. So, you get to know both risks and benefits and alternatives for whatever the procedure before you or the option before you is. Risks, benefits, and alternatives. That’s really clear in the law. I think in practice, people rarely get all three. Sometimes they’ll get some risks and a lot of times it’s a risk of an alternative. In the birth sense, people will be told of the risk of not doing a cesarean surgery, but they won’t often be told about the risks of the surgery.
Lozada: Yeah. And I also find that sometimes that risk is not presented in an objective manner, so the language used for a risk for not doing a cesarean gets, “Well, your risk will double,” and we’re talking about when we look at the research it’s going from 0.02 to 0.04. That is a doubling, right? But doubling sounds a lot bigger than those numbers. And then when the risks of doing a cesarean are brought up, if they’re brought up at all in that situation, like you’re mentioning, they’re minimized in saying like, “Oh, but we’ve made them so safe.”
So, it’s tough, because people might… Even if they get the risk assessment of this informed consent, it might not go into the detail of letting them be ultimately the ones that choose. They’re being coerced into one action or another.
Lusero: Yes, yes. Right. Yeah. And frankly, the law, especially in the United States, is not good at catching those nuances. You know, it’s a tricky dance. I want people to feel empowered and have those rights, that they can say, “I have the right to…” Because it’s a two-way street. We’re not going to have rights that we don’t decide to possess. We need people to decide to possess that in order to manifest it. But then there are these… There is the way that the legal system works and a lot of times it’s just limited. You know, we can’t expect that it will be the thing that saves us, because for example, when it comes to informed consent, some laws use the standard of what a doctor would think is reasonable information. Other states use the standard of what a patient would think is reasonable information. Even just the fact that there are these two different standards is really indicative of… There’s a pretty wide range there of what information might be expected.
And then, even if we’ve used the reasonable patient standard, there’s nothing really in the law that says that a doctor has to present it in a way that’s not coercive or slightly pressureful, or even slightly misleading, or leading. Just leading.
Lozada: Yeah. I want to talk about two things. I want to talk about first the idea of mistreatment or violation of rights in childbirth can sound really abstract, so let’s talk a little bit about what that could look like and what some of those mistreatments look like in practice. And I want to put it into the context that there was a study done last year, 2019, the Giving Voice to Mothers study, where it was reported that one in six women said they experienced one or more types of mistreatments in their care during labor and delivery, and these reported rates of mistreatment during childbirth were consistently higher for women of color. So, one in six is a huge number. What do these mistreatments look like or what can they look like?
Lusero: I also want to note that the mistreatment was higher for people who gave birth within a facility, specifically a hospital. So, the great work of researchers like Saraswathi Vedam through the Birth Place Lab and others who have begun to say, “Here are words. Here are ways that we can define this mistreatment,” is that then we can have pictures in our mind that help us categorize. And they’ve come up with a set of categories that include things like name calling, disrespectful communication, bullying, and then of course things like use of physical force, restraint, sexual assault in the process of seeking care, neglect, discrimination, withholding of care. And then, of course, forced procedures. Everything from forced episiotomies, even drug tests performed without consent, and certainly forced or coerced cesarean surgery.
Lozada: So, within those mistreatments, I think it’s important to put specifically what those could look like and that there is a very broad range and how it goes back to what you were talking about, using your gut, right? The tagline for this podcast is inform your intuition, and if you’re starting to see red flags along the way, to not dismiss them or think, “Well, it must be just me.”
Lozada: However, that can be really hard to do because not everybody’s treated equally and there are certain populations where just standing up for your rights or saying, “I do not give consent,” or, “You didn’t ask me properly,” will then make them a target or create a situation where they’re gonna receive worse care. Can we speak about that?
Lusero: Yes. It is not clear cut. It’s not so simple as just proclaiming, “Hey, provider. Did I mention I have this right? Oh, right. Everything’s smooth from here.” People are differently positioned with regard to those rights and differently perceived, so absolutely it is true. I have been on the phone with people literally while they are having conversations with providers in the hospital and heard how they’re just treated differently. You know, I literally was on the phone with a young woman who was clearly being talked down to because she was young, because she was alone, because she was perceived to be homeless, so for her, and she did an exceptional job of recognizing her rights and maintaining her strength in the face of incredible pressure.
But it literally just wasn’t an option for her to say, “I insist. I demand to be treated fairly.” She faced a real risk, and she was explicitly threatened with Child Protective Services investigation. And it’s just true. People of color, who will be disproportionately drug tested, and once drug tested, those will be disproportionately referred to Child Protective Services, and then once in Child Protective Services’ reach, will be disproportionately determined to be abusing or neglecting their children.
Lozada: It’s written in your document and I’ve heard you say this before, and I totally agree, that it’s really important to center the most vulnerable populations when talking about protecting these birth rights, because it’s not just for… If we center the most vulnerable, or those most in the margins, then everybody benefits. So, say you are experiencing mistreatment, say you are having your rights violated. What are some things you can do to help stand up for yourself or have your rights be protected and have informed consent, not be coerced, all of that?
Lusero: Yeah. So, the first thing I’ll say is the sooner you can begin to have an eye toward that, the better. Of course, it gets harder if the first time that you are needing to figure out how to do this dance with your provider is while you are in active labor. Of course, just the time constraint makes it trickier. The physiologic constraints make it trickier. The provider’s risk calculation with regard to their liability makes it trickier. So, everything gets trickier in that active labor moment.
But even still, so let’s say we’re there, because the reality is that is for a lot of people… That’s the first moment that they realize, “Oh, I might have to stand up for myself in a way that I wasn’t expecting to today.”
Lozada: Or they might have a different provider suddenly. Not the one that they’ve been with all along or whoever showed up, right?
Lusero: Yeah. I have a great rapport… Yeah. Yeah. So, number one, a big thing you can do is buy time. So, that helps you kind of stay in a sort of calm spaciousness, and then it also just helps put some more space between those interactions, which can become pressureful and tense. So, however you can, buy time. People use things like, “I want to call my mom and talk about this,” or, “Can everybody leave the room so I can talk to my spouse about this,” or, “I need to pray about this,” or, “I need a moment alone about this.” Whatever the thing is, can you give me a minute? I’m feeling overwhelmed. This is a lot to take in, can you give me a minute?
So, if that kind of buying time approach doesn’t work, you can also at least record what’s happening. Take notes. They can write things down. They can do audio notes. They can do video. And it’s not so much for the purposes of surveillance, although that has been a useful thing that people have found, but even just for your own reality check. Of course, having people with you is great, and COVID has really challenged and complicated that. Partly in these moments, it can be really helpful to have multiple people in the room. One person who’s kind of like right there with you, another person who’s being that other voice, saying, “Well, wait. I have a question.” Or just that kind of mirroring language can be really helpful in these dynamics, like, “Well, but doctor, I heard her say she didn’t want that. I think I’ve heard her say that every single time you came in here.”
So, just the value of having somebody else, I’d say try it. Maybe you can have that other voice be on the phone. “Well, doctor, my mom really just doesn’t get it. Could you explain it to her? She’s right here on the phone.”
Lozada: And I also like using the word, “Is there any reason why,” or the phrase, “Is there any reason why,” and asking the provider, or the nurse, or whoever. Is there any reason why I can’t get up and move around? Is there any reason why? It takes you out of protocol, I find, and they have to think about is there any reason why you particularly, you, can’t do this thing, instead of like yes or no.
Lusero: Yeah. Similar with that, sort of the value of that vocalization, worst case scenario you don’t have somebody else with you, you can kind of be that other witness. You can vocalize. I hear myself saying I need more time. I hear myself saying I don’t want this. Again, I think there’s just even mental health benefits. Also, a lot of times the true emergency is very, very rarely in a short amount of time. And similar, the violation isn’t usually in a short amount of time, partly because it’s like days after where you’re kind of grappling with what happened, and what could I have done, and how did that go down, and how did I let that go down?
So, I think bringing yourself close as a witness of yourself, it has long-term benefits.
Lozada: And it can be hard to do it in the moment if you’re suddenly feeling trauma happening in your body and your nervous system’s shutting down. And so, is it fair… This is a leading question for you. Is it fair to put the onus of defending those rights on the person giving birth, and their family, and their doula and such?
Lusero: Is it fair?
Lozada: Well… Right? Yeah.
Lusero: No. I think it’s not fair. I think it’s terribly not fair. I think there’s so many ways where I wish we were a more humane culture. And that’s… You know, Elephant Circle is the name of the organization that I run and it’s called Elephant Circle because I was so inspired by seeing an elephant labor in the wild. The elephant was surrounded by the herd of elephants. And I really think that humans need that, too. This perinatal period is so unique and really warrants a herd.
Lozada: You mentioned that the violations and the harm tend to be not a very specific short incidence, but it can devolve and happen over time and be something that’s repeated, so if you have experienced a violation, what can you do after the fact?
Lusero: This is actually one of my favorite sections in the BIRTH RIGHTS resource. I think for some people, some people that have some faith and trust in laws, the rule of law, the first thought they have is, “I should get a lawyer.” But that is just one of the options and a lot of times it’s not the best option for folks. Other things include number one, articulate your story even just for yourself. Sometimes I think people skip this step because they want to go to that, “I need to tell somebody else that this was wrong.” But there’s a real value in first grounding yourself in what happened. Write it down. And I do think actually writing it down. Maybe you start with a voice memo if you’re not comfortable with writing, but at some point, you do want to be able to see those words written down.
From that then, you may use them for different things. Some people find and get more luck with bringing some sort of community pressure. Whether it’s through social media, or whether it’s through telling everybody you know, “Hey, this is what happened to me. I don’t think this facility is good or this provider is good.” There… Essentially, I think what people need is they need to feel heard, and so finding mechanisms to be able to have your story heard is a path towards healing.
Lozada: You also mention, and I thought this was a brilliant thing, and not enough people do, I think, is getting your medical records.
Lozada: Why would that be important?
Lusero: Number one, if you are going to pursue any sort of legal action, you’ll need that first. But actually, number two, a lot of people find that what they see written in the records does not coincide with what they experienced. And one piece of vindication you can get is you can at least get an amendment to your medical records. There are strong laws at both the state and federal level for doing that. So, the facility does at least have to receive a letter from you that they then attach to the chart that makes any changes. And I think that then is a powerful thing that people can do. It goes with them. Those records then stand as a record.
Lozada: All very important things for people to know and I’m looking at the time and going like, “Oh, we need to wrap up,” but we could go down so many different rabbit holes, right?
Lozada: Was there anything that you wanted to make sure people know or that we didn’t get to?
Lusero: Well, I think culture change is really possible. It does happen. One of my favorite examples from this childbirth period is that in the ‘70s even, the early ‘70s, it was still not common for a person’s… You know, like the other parent, to be in the room when babies were born. That was just not done. And it was just starting to shift in the ‘70s. More and more people wanted their spouse with them when they were giving birth. And some people brought lawsuits to that end. And those lawsuits failed. So, it was never established in the law that this is a right people have, but it was established in culture. The culture changed. So, I just think that shows that what we can do with culture change is very powerful and there’s a lot of hope and power there.
Lozada: Indra, thank you so very much for this fantastic talk. It’s been a pleasure.
Lusero: It’s been a pleasure. Thank you so much for having me.
Lozada: That was Indra Wood Lusero, who is founder of Elephant Circle and the Birth Rights Bar Association. Indra has helped pass legislation in Colorado to eliminate the shackling of incarcerated women during pregnancy and birth, to improve midwifery and birth center regulations, and to create more humane policies for families impacted by substance abuse. They also spearheaded the creation of BIRTH RIGHTS, a resource for everyday people to defend human rights during labor and birth.
I hope that your main takeaway from our conversation is the importance of narrating, repeating, having others bear witness, and documenting your interactions with care providers if you feel that your rights are being violated. Your support team and family can help with this even over the phone. And also, that knowing your rights during birth is a vital first step. So, to help with that, the one thing you can do for you is to download the incredible BIRTH RIGHTS resource put together by the Birth Rights Bar Association and the National Advocates for Pregnant Women. They’ve created versions in both English and Spanish, and you can find them at birthrightsbar.org.
And the one thing you can do for the rest of us is to amplify and support the Birth Equity Bill package that Elephant Circle has been working to make into law in Colorado. Go to ElephantCircle.net to learn more and while there, take a look at their events page and the many other resources related to birth justice.
You can connect with Birthful on Instagram @BirthfulPodcast and to learn more about Birthful and my birth and postpartum preparation classes, go to Birthful.com.
Birthful was created by me, Adriana Lozada, and is a production of Lantigua Williams & Co. The show’s senior producer is Paulina Velasco. Jen Chien is our executive editor. Cedric Wilson is our lead producer and Kojin Tashiro mixed this episode. Thank you for listening to and sharing Birthful. Be sure to subscribe on Apple Podcasts, Amazon Music, Spotify, and everywhere you listen, and come back next week for more ways to inform your intuition.
Lozada, Adriana, host. “How to Stand Up for Your Birth Rights.” Birthful, Lantigua Williams & Co., May 26, 2021. Birthful.com.
About Indra Wood Lusero, Esq.
Indra (they/them) is founder of Elephant Circle, the Birth Rights Bar Association (BRBA), and a staff attorney at the National Advocates for Pregnant Women (NAPW), which is a non-profit organization that provides education, advocacy, and pro-bono criminal defense and civil rights legal work. In all facets of their work, Indra demonstrates a commitment to reproductive justice.
Indra is a queer genderqueer Latinx parent who makes their home in the Rocky Mountain West. They decided to attend law school following attendance at a midwifery conference in 2005 where a critical need for a “hotshot team of lawyers” was identified. They have authored several publications including Challenging Hospital VBAC Bans Through Tort Liability and Making the Midwife Impossible: How the Structure of Maternity Care Harms the Practice of Home Birth Midwifery. In addition, they have contributed to the passing of legislation in Colorado that has enhanced midwifery and birth center regulations, created more humane policies for supporting families impacted by substance use, and which helped end the shackling of incarcerated birthing people during pregnancy and labor.
They are proud to share the results of a joint effort between the BRBA and NAPW, Birth Rights: A resource for everyday people to defend human rights during labor and birth, which can be accessed via both organizations’ websites.
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