EBB 217 – Disability Justice in Birth and Parenting with Stefanie Lyn Kaufman-Mthimkhulu

Learn more about Becoming Disabled Again for BADT.

Learn more about Birth and Disability Course with Birthing Advocacy Doula Trainings.

Learn more about Crisis Response for Birthworkers. 

Learn more about Disability in the Family: A Course for Parents + Caregivers here. 

Welcome to the Evidence Based Birth® Podcast. My name is Rebecca Dekker, and I’m a nurse with my Ph.D., I’m the Founder of Evidence Based Birth®. Join me each week as we work together to get evidence based information into the hands of families and professionals around the world. As a reminder, this information is not medical advice. See ebbirth.com/disclaimer for more details.

Hi, everyone, my name is Rebecca Dekker, pronouns she/her, and I will be your host for today’s episode. Today, I’m so excited to welcome Stefanie Lyn Kaufman-Mthimkhulu to talk about disability justice in childbirth and parenting. Before we get started with our interview, I want to let you know that there is a content warning for this show as we will be talking about trauma, sexual violence, medical violence, and history of sterilization. And if there are any other detailed content or trigger warnings, I’ll make sure that we post them in the description or show notes that go along with this episode. Now, I’d like to introduce our honored guest.

Stefanie Lyn Kaufman-Mthimkhulu, pronouns they/she is a white, queer and non-binary disabled, neuro-divergent, survivor of sexual violence in the psychiatric system. They show up for their communities as a disability justice educator and organizer, parent, somatic and nonclinical healer, writer, transformative justice practitioner, and as the founding director of Project LETS which you can check out their website at projectL-E-T-S.com. Stefanie’s work specializes in building non-carceral peer-led mental health care systems that exist outside of the state and re-imagining everything we’ve come to learn about madness. Stefanie is the editor of Abolition Must Include Psychiatry and the author of We Don’t Need Cops to Become Social Workers. Stefanie is an experienced facilitator, mediator, curriculum, developer, and strategist for Anti-ableist Leadership, Mental Health and Disability Policy, and Access Centered Practices. They’re located on unseated, Narragansett in Wampanoag land in so-called Providence, Rhode Island. We are so thrilled that you’re here, Stefanie, welcome to the Evidence Based Birth® Podcast.

Stefanie Lyn Kaufman-Mthimkhulu: Thank you so much for having me here, Rebecca. I’m really excited to be speaking with you today.

Rebecca Dekker: I remember being so impressed by the class you taught through Birthing Advocacy Doula Trainings, and you were on my wish list of people to interview for the podcast. So, we’re so thankful you’re joining us here today. Can you tell us a little bit about how you got started in this work.

Stefanie Lyn Kaufman-Mthimkhulu: Yeah, many things in my life had … Things happened to me, to my community members and I am often not able to live with the tensions that arise from witnessing those gaps. And for me, coming into the space of birth happened, again, through my lived experience, I became pregnant in early 2019, and I’m someone who has lived experience with many different disabilities, both physical and psychiatric. I live with chronic pain and I’ve had a lot of negative experiences with both the medical system and the psychiatric system ranging from just negligent and indifferent to violent and abusive. For me, coming into pregnancy and the thought of coming into parenting, lacking so much community and so many tools and knowledge around what that would look like for me and what that’s looked like for our community members got me really wanting to just talk and listen and build more spaces for this type of honest and with regards to work in disability and mental health spaces.

I’ve been involved in this for a long time for my own survival, and again, my community’s survival. I lost a friend to suicide when I was a freshman in high school, and there was no adults were equipped to support us at that time. And since then just navigating various educational systems, medical systems, and then what comes along with moving into birth and parenting really reaffirmed my commitment and values to pursuing disability justice and practices that follow for our community because I have witnessed some real traumatic things inside of the system and outside of the system through what we often term to be alternative care that can be violent in different ways than the system itself. So, really seeing a lot of places that we need conversation. I do this work because the work of disability justice, I believe is the foundation of liberation for all of us when we’re thinking about how we value people, who we decide is worthy of resources or care, all of the other systems of oppression build and layer on top of ableism. For me, that’s really why I’m here.

Rebecca Dekker: So, you are building on both personal experience and then also experience as an advocate in your community and witnessing other people go through similar situations?

Stefanie Lyn Kaufman-Mthimkhulu: Yeah, absolutely. It is for me, particularly around birth and parenting, I’m someone who never really thought I wanted to be a parent. I think in my heart, I knew I did want to be a parent, but I had just been surrounded by so much that was saying, “No, you can’t do that. You don’t even fully know how to take care of yourself, how could you take care of another human being?” And then on top of all of the very in-depth histories of what our communities have faced in terms of for sterilization and thinking about why these conversations are so important, I want to uplift the ways that we don’t often connect reproductive justice with disability justice and these histories and lineages are so critical, particularly because disabled people have often been framed as unfit for parenting as inhospitable hosts for life. I remember thinking like, “Oh my God, I would never want my child to deal with the types of things that I deal with because of my disabilities or because of what has been labeled mental illness.”

And that is something that lives inside of me, but so lives in our culture. When we look at the rates of children that are taken away from disabled parents, particularly, psychiatrically disabled, or intellectually disabled parents through what we call the Child Protective Services System, these things are built on our societal and cultural values of who we see fit to care for and take care of others. I’ve seen people who were having a mental health crisis that was triggered by their doctor changing their medication. And then when they contacted that doctor to say, “Hey, I’m not feeling well, I’m having a crisis,” their children were literally taken away because they were impacted negatively by something that was happening in their bodies as a reaction to medication. I’ve seen folks who are penalized and criminalized and punished for accessing care as parents, I’ve seen folks criminalized and punished for not accessing care as parents, and thinking about other layers as well of class and poverty.

We know that disabled people are intentionally kept in poverty through so many systems in our society. And then if you have a child that manifests the repercussions of that oppression, the answer would be to take that child away and pay someone else to take care of them, rather than staying that money in the parents who want to parent, but don’t have the tools and the resources. I had situations myself where I have needed, or wanted to take my daughter to the doctor or go to the doctor for myself and have had old self-injury scars, and so I’ve had to like forego that medical care, because I didn’t want someone to assume, “Okay, if that person is self-injuring, they may be harming their child.” Or make assumptions about what that looks like in terms of my parenting. So for me, it’s kind of those everyday tensions and situations that arise for our community members around what we have to navigate and what we have to sacrifice in order to not fall under certain systems of surveillance or state intervention while we often just need some support and care.

Rebecca Dekker: Wow. You went over so much, and that when we were going to talk about disability justice, I have to admit that the first thought in my mind was not about Child Protective Services. I know you’ve talked about that in the past, but it’s a really vivid reminder of the consequences of oppression against disabled people. Can you go back a little bit and explain to our listeners, what is disability justice? Because we’ve mentioned that several times and I know there’s history and definition behind that term. So, can you help us understand that? And how does that relate to reproductive justice?

Stefanie Lyn Kaufman-Mthimkhulu: Yeah, absolutely. Disability justice is something that has been happening for a long time, particularly for Black folks, Indigenous folks, queer and trans folks, poor folks who have been practicing these values without actually having it named under disability justice. But that language particularly comes out of what was left after the Disability Rights Movement. The Disability Rights Movement had some really incredible victories, but was also very narrowly focused on achieving equity through the law. It was predominantly led by white disabled folks, by CIS, straight white men with physical disabilities and mobility impairments who, again, were trying to utilize the law to achieve liberation. And particularly, folks who live at the intersections of different marginalized identities often know that the law is one tool, but it’s often very inaccessible for people. The Americans With Disabilities Act was passed over 30 years ago and yet there are so many places that are still physically inaccessible because there are so many loopholes in the law.

And then if I go somewhere as a wheelchair user, the responsibility is on me to then maybe sue a business or pursue legal action so that I could just get in the door. And so many people don’t have the time, energy or resources to go that route. So, while disability rights was often saying, “Okay, how do we ensure that individual disabled people are able to access education, access housing,” disability justice is saying, “Okay, how do we think beyond just the law and not just think about individual’s rights, but our collect access, our collective liberation? How are we restructuring society and how we care about each other?” Rather than just saying, “Okay, these are the tools we have. How do we navigate that system?” And I think it’s always a little bit of both because I don’t want to make it seem like the Americans With Disabilities Act or the 504 Rehabilitation Act were not critically important things. They absolutely are, but they were not the end all be all.

They were not enough access, and accessibility is often the bare minimum. And so when we’re thinking about disability justice, we are centering multiply marginalized disabled folks. That is disabled people who have other marginalized identities as well. So thinking about Black trans people, non-binary, autistic people and not that there’s not room and space for all of us, but that we want to center people who live at so many of those intersections because the experience of disability looks very different if you are a straight white person and if you are a queer Black person. It’s not something that is, there are similarities, but the experience is not the same. Disability justice is saying, “Okay, how do we take disability and ableism and look at it in connection with all other systems of oppression? How did we even come to this place where this is how we value people?

What is the way that we value people have to do with the way that we value the land and colonialism? And really making lots of different connections there.” And the practice of that for me is one of the core values I want to uplift is around interdependence. I think that’s such an important principle of disability justice because we are all interdependent and we have been sold this lie that we are dependent for a little bit, when we are born. And then the goal is to become independent, and if you don’t become independent that you failed, that if you need people and you need support that’s a failure. And really looking at disability justice to say, “We all have value.” I remember I was in college, I was in a bio ethics and culture class reading a book around prenatal testing and looking at genetics screenings as a potential practice of eugenics.

And there was somebody who shared their narrative and she was saying, “If my child doesn’t have the potential to become the president of the United States, I don’t want to have them. I would prefer to have an abortion.” And so when we’re looking at one of the intersections, there’s so many intersections between disability justice and reproductive justice. One of those really difficult spots would be around abortion. I’m someone who believes that everybody has the right to choose and make decisions about bodies yet when the decisions so heavily sway in one direction, that to me, reflects something about the society that we’re in, the values that we have. There are so many people who report being coerced by their doctors. Let’s say they have a genetic screening, and the fetus is determined to have spina bifida, the coercion that can take place around encouraging somebody to have an abortion saying, “It would be better if they did,” or, “You don’t want to deal with these issues in your life.”

Things like that. So really wanting to find ways to talk about that. And also to talk about, “Hey, it is really expensive.” That comes up a lot. People are saying, “I don’t know that I can afford to take care of a child who has really high support needs.” And again, that is something that’s a societal reflection where we have to make it possible for everyone to raise and care for and provide all the resources necessary for disabled and neurodivergent kids, because that’s how we get to a place where lots of different types of violence is happening because we’re under-resourced because we devalue people in major, major ways.

For me, when I’m thinking about disability justice and reproductive justice, I always sit with there’s a lot of tensions and also disabled people, our communities have so much experience with having our bodily autonomy being taken from us, being told that we cannot make those decisions. Someone who has been in the public eye recently is Britney Spears who has been under conservatorship for 13 years, who was just freed from that conservatorship and thing that came up in her testimony was that she had an IUD that was forcibly placed and that she could not get it out. She wanted to have children and her conservators wouldn’t allow her to remove the IUD, and there could be a lot of reasons why that is. Britney Spears is just one example, one very high profile example of someone who has wound up in this community prison almost, you’re caged without really being caged, you can call it an open-air prison as well, who literally, we don’t even get to make decisions on that front as well. So, a lot of intersections there.

Rebecca Dekker: Yeah. When you start explaining, it makes a lot of sense, the whole history eugenics and forcable birth control for disabled people and sterilization and child protective services. There’s a lot of coercion, and like you said, it all comes down to not valuing the lives of disabled people, as much as you value other people’s lives. I see that all the time with a family member who is physically disabled, it’s embarrassing to go to a restaurant and realize that she can’t get in. And how many years has it been since that law was passed or to go to a job interview and not be able to open the door to get in, because there’s no way to get in the building for your job interview. It’s everywhere in our society. And even though we have these laws to protect people, like you said, that does not cover everything.

Stefanie Lyn Kaufman-Mthimkhulu: Yeah.

Rebecca Dekker: For sure.

Stefanie Lyn Kaufman-Mthimkhulu: Absolutely, and just a quick example there, I was just recently flying with my partner and I’m a part-time wheelchair user and there were so many parts of the experience that were really traumatic and difficult for me. people were speaking directly to my partner and not me asking him if I could walk, if I could get out of my chair, people referring to me as just wheelchair, literally. And then I was sitting on the plane, I was left on the plane for about 45 minutes, they could not find my wheelchair. And they actually asked my partner to go look for it, and I was left with a bunch of flight attendants who were complaining about how long they had to stay on the plane. I had to go to the bathroom and I couldn’t move. I had no nothing. I was just sitting there.

And I’d been thinking about how on earth I’m going to fly with my daughter because I ended up having a full-blown meltdown because if you have never been in the experience or in a situation where you have no ability to move your body or get yourself anywhere without relying on people around you who are not trained or equipped, or even remotely compassionate enough to attempt to support you and that feeling of, “Oh my God, I’m so helpless right now.” That’s the feeling that disabled people internalize when actually it’s not about our bodies, what our bodies can or can’t do because I’ve seen first class of a plane. I’ve never flown in it, but I’ve seen it. And I know that if airlines really wanted to make it possible for wheelchair users to stay in their chairs on planes, they could do that so that we could go to the bathroom.

And so for me, I’m thinking, “Okay, how am I going to fly with my kid if I could be thrown into such a crisis moment because my needs are not met, and then I need to be worried about taking care of her needs.” And so those are the moments where I hear people say, or who look at me and go, “Oh my God, I could never do it. How do you do it? I’d rather be dead than be in a wheelchair.” And in those moments, what I really want people to understand is that what you’re really feeling, the thing that you really don’t want to experience is ableism. You don’t want to experience ableism because things shouldn’t really be all that different just because I’m sitting down rather than standing up.

And I want people to really, really recognize that, that it’s ableism that we don’t want. It’s not sitting down in a wheelchair or being on medication or not. That thing that says no, people will look at ambulatory wheelchair users, people who can also walk who use wheelchairs and say, “Well, why? If you can walk, why use a wheel wheelchair?” Because people are assuming that is the worst thing ever, that’s a death sentence, a tragedy. And then I’ll ask folks, I’ll say, “Okay, let’s say you go to the grocery store and you’ve got five bags in your hand and a bus comes along, are you going to get on it? Are you going to like walk a mile home?” You’re probably going to get on the bus because it’s easy.

You could walk, maybe you could walk, but you don’t want to, because you’re going to be in a lot of pain, your muscles are going to hurt. That’s the way that folks who are ambulatory wheelchair users, we make decisions about our bodies, “I have to do that because I know if I go walk with my daughter, I won’t be able to move for three days.” And I’d rather sit in my chair and know that I can still go for that walk. I won’t be in pain. And it won’t knock me out for three days. So, just thinking of some of that as well.

Rebecca Dekker: Yeah. It’s like don’t get standing on airplanes, and wheelchair users, there’s so many horror stories that’s been our experience for the last 40 years with our family is all the disasters and neglect and it’s terrible. But like you said, it’s ableism, it’s not being in a wheelchair is the negative thing. It’s how people react to you. And I wondered if you could talk a little bit about that more like focusing in on childbirth and like giving birth and hospitals and prenatal care. And what are some aspects that maybe healthcare workers who are listening to this, haven’t thought about how their clinic or hospital is like ableist towards their disabled clients who are coming to have babies there

Stefanie Lyn Kaufman-Mthimkhulu: Wow, Rebecca, do you have all day? Do you have the rest of the day to talk about this?

Rebecca Dekker: Well, I know it’s probably never-ending, but if you could just give a few examples to open the eyes of the people who are listening who maybe are labor and delivery nurses or midwives or doulas, and they haven’t really thought about how it impacts parents.

Stefanie Lyn Kaufman-Mthimkhulu: Absolutely. Yeah. I will first say that I teach a whole course on this with Birthing Advocacy Doula Trainings. I think for me, there are so many different what I call kind of activation points that are present throughout all the different stages of pregnancy, labor and delivery, and postpartum, which for me is a forever thing and ongoing thing. I think one thing I want to name that I’ve kind of touched on a bit, and this is particular to both disabled folks, neurodivergent folks, people who’ve been labeled with mental illness, trauma survivors, this kind of sense that becoming pregnant the equivalent of this like loss of bodily autonomy, where all of a sudden things are growing and stretching and all these things are changing and we have no control over it. For me, as a trauma survivor, that was very, very activating, very triggering.

And everyone was just always talking about, “Nothing else matters at as long as you have a healthy baby.” My goodness, like the ableism in that statement alone, that’s it? That’s the only thing that matters? And for me as a multiply disabled person, I was navigating my pregnancy the majority of it without my partner who is living in Swaziland, we could not get her a visa, so we were separated. And having all of these people placing all of that expectation and attention solely on this unborn baby. And I found myself often being like, “Okay, like what about me? I’m not doing okay right now. I don’t have support right now.” And I was someone who had many experiences being gas-led by doctors and living at that intersection of being someone who has physical health issues and genetic issues and physical disabilities and someone who’s been labeled mentally ill nearly my whole life.

So many things just live in that intersection where no one ever really believes me. And I get referred to psychiatrists all the time when I’m going to see someone for like very, very physical things. And again, the body-mind is one thing it’s connected, yet the way that gets weaponized is for people who’ve been labeled as mentally ill to say, “No, none of those things are happening, you’re fine.” But this really interesting thing happened when I became pregnant where suddenly everyone wanted to figure out what was going on because they were scared that my daughter would have the things that I have. I experienced seizures, but I’ve not been diagnosed as epileptic, and that runs in my family, that particular experience. Nobody ever really cared until I was pregnant. And then it was like, “Get Stefanie on an anticonvulsive right away, because she could have a seizure while she’s driving and kill her baby.”

And I’m like, “Stefanie could also have a seizure while they’re driving and kill themselves, but okay.” And that was constantly reaffirmed to me of like, “Now we care because there’s this child growing inside of you.” That was really triggering. I think the physical pain is something I also want to uplift that I think just gets kind of just really normalized and erased in a lot of ways like, “Oh yeah, our bodies were made for this.” Do we actually really know what happens to the human body during pregnancy? It is a wild experience where everything gets shoved, where it does not belong, and if you have other disabilities other health issues, what happened for me was just everything started cascading.

And then I couldn’t take certain medications or the ones that were being offered to me, I didn’t want. The side effects were terrible. I couldn’t sleep. I couldn’t eat. It was really, really difficult. And it honestly made me hate being pregnant. And I remember having some people being like, “Just enjoy it. it’s going to it’s going to end soon, but I had such a difficult time enjoying it because of how much pain I was in. I think we often don’t talk about that as well.

Rebecca Dekker: So you were talking about the importance of believing disabled people when they talk about what’s happening to them, especially during pregnancy and then not making able to statements such, “All that matters is that you have a healthy baby,” which kind of implies, A, that they don’t care about you, and B, that a disabled child is not worthy or a value as well. Is there anything else you want the world to be mindful of or aware when it comes to creating safer spaces for your community and childbirth or postpartum or any of those parenting spaces?

Stefanie Lyn Kaufman-Mthimkhulu: Yeah, absolutely. I think something that often gets held up and particularly this can come in outside of the medical system and what we often call alternative spaces is that disability is the result of like bad choices. And that if you make better healthier choices, you won’t be disabled or so disabled anymore. And I remember contacting a midwife who worked in a hospital in a birthing center and did water births, and for me, that felt like a good combination of what I was looking for. I called her and within like two minutes, she asked me what my starting weight was and what weight I was at now. At the time, I didn’t think it was like a strange question because I was like, “Okay, that’s just what information is needed.”

And I shared that with her and literally she was like, “Oh my God, wow.” Like, “I don’t even let people gain that much weight in an entire pregnancy. What are you doing? Are you moving?” Or she was like, “Are you exercising?” And I was in shock at this point, and I was like, “I’m disabled, I would like to be exercising more than I’m able to right now.” And I was actually feeling a lot of like shame and guilt about that because I was gaining a lot of weight. I was also very like underweight for my baseline before I got pregnant. I was not really eating. And so when I got pregnant, it was almost like I gained like twice the weight. And so it was a lot very quickly. And so I was feeling a lot of feelings about that, and this woman just destroyed me. And I told her that I couldn’t really exercise.

And she was like, “But I mean, do your legs walk at all? Can you get to a pool?” And even retelling this, I’m like, “Wow, this sounds really fake, but this really happened.” And the worst part of it was I didn’t even respond. I just listened to her and let her say all of this and then told her I would call back to set up an appointment with her because I just didn’t even know what to do. And after that call, I was hysterical crying for like hours and thinking how that was almost worse than anything that had happened in the medical system, because I expected it in the medical system and I didn’t expect it going to community. That was a really hard lesson for me, that being outside of the system does not automatically make you any better than it because people make up community and people make up systems and we can be violent in both spaces.

And thinking about everyone who does support around birth work and parenting has to be equipped in basic understandings of disability, of mental health, because anyone, you don’t have to be someone who’s been labeled with mental illness prior to pregnancy to be thrown into a total anything because pregnancy is a combination of so many different activating sensations and environments, different triggers. I’ve worked with many people who’ve never had a single mental health issue on a deeper level, and then became pregnant and experienced very intense altered states, very intense intrusive thoughts. And then often those things can get classified in the wrong way. We have things that maybe look like more of like intrusive thoughts or more like OCD that might get read as psychosis or altered states, when those things are very different and need to be navigated very differently.

Anybody could become what we call psychotic if you don’t have enough sleep. So, these conversations and tools are so important for all of us, because when I’m working with people postpartum who are even having very, very intense mental health symptoms, almost always the root, or in my particular situations that I’ve been working in, the root is either coming from lack of sleep, lack of money or lack of support in community. And often they’re all connected because they all kind of come from the same places.

So, really wanting to think about how we can navigate some of those gaps in care for our community members while also really working to not replicate some of the same violence that we see in the system. And the last thing I’ll say about that, I think another kind of divergence a little bit from this is around parents, particularly non-disabled or neurotypical parents who have disabled kids, who have maybe autistic children and they’re not autistic themselves, really thinking about being able to provide disability justice informed resources, connecting parents and communities to people who have lived experience, who can offer insight and say, “Autism is not a death sentence.”

And these are the things that can support your child that are not coming through solely a medicalized framework. Or we often talk about like ABA, which is an evidence-based, “treatment” for autistic children, which many autistic people refer to as torture is often very much like compliance-based training to make autistic children perform and look like neurotypical children without actually changing anything in our environments to support their neuro-divergence.

Rebecca Dekker: Hi, everyone, unfortunately, the last few minutes of our interview with Stefanie were not recorded. I wanted to thank Stefanie again for speaking with us and let you know about some of the resources that Stefanie would like to point you to. First of all, having taken one of Stefanie’s classes in the past, I can highly recommend taking a class from Stefanie if you can. This year, Stefanie will be teaching a crisis response for birth workers class. This class will take place in both March and October, and is taught through Birthing Advocacy Doula Trainings at birthingadvocacy.com. The March class is starting just a few days after this podcast comes out on March 26th and 27th. Stefanie says that anyone is capable of experiencing a mental health crisis and this course helps equip birth workers to support clients without rely on carceral systems that may increase harm. This course teaches birth workers how to navigate mental health crises with their clients through an abolitionist peer-led and disability justice lens.

Stefanie also wanted to let you know that they will be teaching a course called disability in the family. This is a course for parents and caregivers and it’s set to launch in fall 2022 at Project LETS. So make sure you join their email newsletter at projectlets.org to get updates about upcoming trainings. You can also check out their resource pages and find information about the Project LETS rapid response service, and they point you to non-carceral crisis lines and crisis resources. And you can follow Project Lets on Instagram @projectlets. If you’re interested in working with Stefanie, Stefanie does one-to-one in family consultations around parenting disabled and neuro-divergent children.

And you can find that information at Stefanie’s website, stefaniekaufman.com, spelled S-T-E-F-A-N-I-E-K-A-U-F-M-A-N. And finally, Stefanie wanted us to share a piece written by Stefanie called Becoming Disabled Again for the Birthing Advocacy Doula Trainings Blog. It’s about parenting as a disabled person. So, we’ll put the links to that article and all these other resources in the show notes. Thank you again for listening and a huge thank you to Stefanie for coming and sharing their work with us and educating us on this very important topic. We’ll see you next week. Thanks, everyone. Bye.

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