Disabled Parents Interview w/ Amy Berkowitz
An offshoot of the Expectant Series
Disabled Parents Interview is just that—interviews with people who identify as disabled parents sharing their experiences around disability and parenthood. The years leading up to my pregnancy, I looked everywhere for examples of disabled parents, specifically disabled parents who were the ones carrying the pregnancy, to see if it was something I could actually do. My search came up with very few results. So, here is my attempt at assembling a handful of stories and experiences!
Below is an interview with our first disabled parent, Amy Berkowitz. Amy is the author of Gravitas and Tender Points. She lives in San Francisco where she co-hosts the Light Jacket Reading Series. She's writing a novel that she likes to call Untitled Bisexual Jumpsuits Project.
Content note: mention of CSA / sexual assault and medical trauma
Olivia Dreisinger: What was your pregnancy experience like? What was hard? What was good?
Amy Berkowitz: It was okay. I didn't particularly enjoy being pregnant, but it was interesting. It felt like a special opportunity to participate in a science experiment, to be inside a science experiment. There were moments that felt exciting and happy: I remember I first felt the baby kick on mother's day. I didn't like how it made my body public, how it made my body something strangers could comment on. I didn't like how it made my body more gendered than it had ever been. Suddenly it seemed like the world was calling me "mama" and I hated that. My baby can call me mama, but I don't want a blog post on choosing the best stroller to call me mama, you know?
But let me also answer this question through the lens of disability. So I have endometriosis, bipolar disorder, fibromyalgia, and a history of vulvodynia. For a long time, it seemed like all of that would make it too hard to get pregnant and have a baby. Endometriosis because it's associated with infertility, bipolar because I take drugs that are contraindicated for pregnancy, fibro because I had no idea how my body would handle the stresses of pregnancy, and vulvodynia because I was scared that giving birth could bring back my vaginal pain.
I started reading about lithium and pregnancy and breastfeeding. I learned that recent studies have revealed that the medicine is nowhere near as risky as older research showed it to be, especially at a dose as low as the one I take. Still, it was very challenging to find a doctor who would work with a pregnant person who planned to continue lithium therapy through pregnancy and breastfeeding. My psychiatrist is great and was very supportive, but she wanted me to find someone who specialized in maternal psychiatry. I started sending emails. Got a lot of replies along the lines of, I wouldn't touch that with a ten-foot pole, have a nice day. I finally found a psychiatrist who had experience working with pregnant people on lithium, and am very grateful that I did. I couldn't have had a kid without her.
I think it's important to say this, to say that I'm someone who takes lithium for bipolar and I did my own research and found out that it would be safe for me to stay on meds through my pregnancy and through breastfeeding, and found a doctor to help me do that. Because in my research, I found all these forum posts where women feel like they're forced to make a terrible choice: do I discontinue the medicine that's made it possible for me to live a stable, functional life and risk having a mental health crisis in order to try to have a baby, or do I not have a baby? I want people to be aware of that newer research — I especially want doctors to be aware of it. My psychiatrist explained that there's a new school of thought that she summarized as "what's best for mom." So much of pregnancy care is based on what's believed to be best for the fetus, and the birthing parent's health can almost be an afterthought. So "what's best for mom" is actually pretty radical.
The other things I was concerned about wound up being fine. I didn't have issues with infertility, which was a blessing. Pregnancy didn't aggravate my fibromyalgia. And I didn't have a vaginal birth, so vulvodynia wasn't a problem either (and I saw a great PT during pregnancy who helped me prepare for a vaginal birth anyway, so I was feeling confident about that).
Olivia Dreisinger: What was your birth experience like?
Amy Berkowitz: I had a pretty easy pregnancy — no complications, very mild nausea, no mood episodes triggered by hormone changes (something I was looking out for).
For me, the birth experience was the hardest part. Throughout my pregnancy, I worked with a midwife-led medical practice with a vibe I really liked. They were trauma-informed, they were empowering, they were open-minded. I was sexually assaulted by my doctor when I was a kid, so I have some pretty serious medical trauma, and this practice was a place where I'd always felt safe.
So I was surprised that I had such a bad experience giving birth with this team. I don't have the energy to look up the notes from my birth or to ask my husband to try to reconstruct the play by play of the experience, so I'll just summarize as well as I can.
My baby didn't want to come out. She liked it in there. The midwife-led practice let her hang out for 15 days after her due date, but she still didn't want to come out. And 15 days late was the max, so I had to be induced. I was bummed about being induced because induction is one of the things that can trigger the "cascade of interventions" leading to a birth experience you have less and less control over. And that's what happened. They gave me pitocin, which was supposed to induce contractions that would help move the baby down into the birth canal, but for hours, no one noticed that the contractions it was giving me were very weak, barely moving her along. They only noticed this after I'd been actively pushing for a long time, using sheer force of will to birth her, with very little help from the contractions. At this point I'd been awake for two days, and especially for someone with fibromyalgia, that's hard, and I was actually falling asleep between contractions.
The doctor said to me, "You don't want a C-section, so we're going to vacuum the baby out." I was very tired, but I knew there was something wrong with that sentence. This was the doctor from the empowering midwife-led practice. She was trying to empower me, I suppose. But I'd never told her I didn't want a C-section, and I was outraged that in this moment, she felt like she could tell me what I wanted, she felt like she knew what I wanted. It's true that a C-section was never my first choice, but it was certainly preferable to trusting this woman to vacuum my baby out of my body "while I just gave a few more really strong pushes" as I was literally falling asleep. I knew it wouldn't be safe for the baby. I asked for a C-section.
Another doctor performed the C-section. Beforehand, my doula showed him a list of requests we had. The most important one was: please tell us what you're doing, step by step. He said he would, but he didn't. I was lying on the table waiting for the C-section to start, and then I remember the doula jumping out of her chair and storming across the room. The doctor had cut me open and taken the baby out without even telling us he'd started the procedure. At the time I was just tired and relieved it was over, but in the months that followed, I felt a lot of grief over the fact that I never experienced giving birth. I didn't care that it was a C-section. I'd just wanted to be part of it when it happened.
It's funny, because I fully wrote a book about medical sexism and shitty doctors (Tender Points), but it somehow didn't occur to me that my birth would be happening inside of this system. Maybe because we had a doula, because we'd taken a comprehensive birthing class that educated us about the "cascade of interventions" and everything, because I'd chosen the midwife-led practice — maybe I thought I'd done enough to insulate myself from the medical context this would all be happening in. Or maybe because if I'd let myself think about it I never would've considered having a baby in the first place.
Olivia Dreisinger: What was your postpartum experience like?
Amy Berkowitz: It was hard, and I think a lot of that was because the birth was hard, both emotionally and physically. A C-section is a surgery, and it takes a while to recover from. And I also had a nerve injury from the epidural. My left foot and ankle were numb. I couldn't really walk normally. I told my physical therapist and she said I should ask to talk to the anesthesiologist. I told the OBGYN who'd wanted to vacuum out my kid that I wanted to talk with the anesthesiologist.
A week later, sitting in the park after a meet-up for new moms, I got a phone call from a number I didn't recognize. It was a man who identified himself as the head of anesthesiology at the hospital. It was a very strange phone call. For about 40 minutes, he insisted that it was impossible that the nerve injury could be related to the anesthesia. He spoke about birthing women's bodies in a bizarrely lascivious way. He insisted I come see him so he could look at my ankle personally. Before that call I wasn't sure what the nerve injury was from but after he spent a good part of his day trying to convince me it wasn't from the anesthesia, it was clear that it was from the anesthesia. I googled him and he is not the head of anesthesiology. He's just one of the anesthesiologists who works there. I did not go see him.
The other thing that was hard was breastfeeding. My baby just wasn't very good at it. She had a tongue tie, and it was hard for her to get milk out of my breasts. As a result, I wound up having mastitis, which is a very painful infection in your breasts that's accompanied by a fever. My breasts hurt so badly that I couldn't hold my baby to my chest. That was a terrible feeling, emotionally. After a few months I decided to give up trying to breastfeed and things got a lot easier.
Because I have bipolar disorder, I'd been worried that I'd have some kind of intense mental health crisis after giving birth. It didn't occur to me that I might wind up having run-of-the-mill postpartum depression. So I didn't really think of it that way until I was nearly out of it. Once I started mentioning to friends who'd had kids that I was going through postpartum depression, so many of them were like, oh yeah, me too! And I was like, why didn't you tell me?! And they were like, I didn't want to scare you! But I wish they had. It would have helped me recognize what I was going through and know that I wasn't alone.
Speaking of bipolar disorder, one thing that my husband and I decided early on was that he would be in charge of all of the night feedings so that I could sleep through the night. Because it's so important to get good sleep if you have bipolar (and fibromyalgia, too). So that was a really good decision, and it was really kind of him to be up for doing that, because it's one of the hardest things about early parenthood. Still, I had to get up at least once in the night anyway to pump or feed because my breasts were constantly producing milk. That's another reason why quitting breastfeeding felt like such a relief.
Olivia Dreisinger: How has disability and/or illness impacted how you approach being a parent?
Amy Berkowitz: It's hard to answer this question because I don't know what parenting would be like otherwise. My disability means that my husband and I work as a team and he takes on things that would be hard for me — our baby sleeps through the night now, but he's still the one who gets up with her, which is very kind of him and very helpful to me. But I think that would happen in any good partnership, the parents would communicate and divide up tasks in a way that feels supportive. (I know that's not the norm and so many dads are so checked out it doesn't even occur to them that there's something they ought to be doing. But that's another story.)
Olivia Dreisinger: What advice would you give other disabled people thinking about having a family?
Amy Berkowitz: 1. If you feel unsure about whether your disability could make it hard to conceive, give birth to, or raise a baby, research is the best thing. Whether that's reading studies or lurking on message boards or talking to support groups or friends. There are probably other people who've gone through some version of what you're thinking about going through. If you know something's possible and your doctor tells you no, that's simply not the doctor for you.
2. Talk to your partner or whoever you plan to raise your baby with and make sure you have a good plan in place for how to do the things that you anticipate being challenging due to your disability. How can they support you? What can they take on so that you don't have to do the challenging thing? Is there something you can be in charge of in exchange? (Not necessary, but it makes me feel better to be in charge of doing all of our computer tasks — messaging the pediatrician, ordering baby gear, coordinating diaper deliveries, etc., and I know my husband appreciates the help).
3. Find friends who've had babies who will tell you all about their experience, even the things that were hard. You know the kind of friends. The ones who start lots of stories with "this is probably TMI but..."