Disabled Parents Interview w/ Laura Lulika
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. Here is my attempt at assembling a handful of stories and experiences!
Below is an interview with our second disabled parent of the series, Laura Lulika.1 Laura is an unprofessional working-class queer disabled artist and parent currently living in Leeds, UK. Working predominantly with video, sound and performance, their practice explores themes of care, sexuality, labour, sickness, counterculture, dirt and performativity in the everyday.
Olivia Dreisinger: What was your pregnancy experience like? What was hard? What was good?
Laura Lulika: My pregnancy experience was so varied from moment to moment it's difficult to sum it up briefly. In many ways, this constantly changing state of the body, where as soon as you get used to one state, it shifts, was excellent preparation for the experience of parenting.
It was a difficult transition in the beginning, the sickness and body changes, dysphoria and questioning of the future, as well as the annoying and invasive questions from strangers. But when I settled into my pregnancy I loved it. I morphed into a whole other creature with thicker hair, rounder shapes, like a fluffy frog and I totally immersed myself in this new form. I became the Egg King.
I was pregnant during the Covid pandemic lockdowns but I felt very unaffected by it all, I had spent so many years of my life housebound that it wasn't unusual to me to be at home. I didn'twant to listen to predisabled people's thoughts on what this experience is like because I knew that it wasn't going to be constructive or help disabled people in any way. So I lived totally in the bubble of my pregnancy and I really treasure the memories of when I really enjoyed being pregnant and present in those shifts even when they were challenging. I researched and practiced and journaled and played through the metamorphosis.
The increase of hormones seemed to improve a lot of the chronic pain I experience and there were periods where I felt better pregnant than my usual baseline state.
In general my pregnancy was undramatic and joyful until the end when everything flipped on its head.
Olivia Dreisinger: What was your birth experience like?
Laura Lulika: My birth experience was horrible. I had meticulously planned a homebirth with a pool because I hate hospitals and I hold a lot of medical trauma and anxiety. The surge in hormones caused pregnancy liver disease, cholestasis, which leads to a high risk pregnancy. The main symptom was intense itchiness, I scratched myself till I bled and I couldnt sleep. I then became 'overdue' and I was pressured into going into the hospital for an induction.
I was treated really badly by the staff who did invasive things to my body and my baby without asking such as membrane sweeps and touching her head to bring on labour. I wasn't listened to when I knew something was going wrong.
I tried to hide, naked, in a wet room and do the birth my way like I'd prepared. I remember squatting and swaying and grunting in the steam with the lingering stench of my partner's pot noodle.
It all culminated in an emergency c-section. I wasn't prepared for this situation and I didn't have any strength left to advocate for myself, I'd been in labour for 60+ hours by this point. I was trying to get myself into position for the epidural but my waters wouldn't stop breaking and I was sliding all over the table. I was huge and in pain. A midwife was shouting at me to get in position and even told me that if anything happened to my baby because I was taking too long, it would be my fault. I was in shock that instead of helping me get into position, she was stood shouting at me, then the anesthetist started arguing with the shouting midwife and it felt quite scary and chaotic in the moment.
It turned out the baby's head was at the wrong angle and they were trying to push themselves out right into my hip which is why I was having intense contractions and no dilation. I had this feeling afterwards that all the non-consensual membrane sweeping maybe made them dodge their head away. The baby and I had both become exhausted and dehydrated and then my partner noticed that the baby’s heart rate started to spike and disappear on the monitor and called over a midwife who immediately pressed the big red buzzer.
I was grateful that we all made it out of there safely after being stuck there for a week.
Olivia Dreisinger: What was your postpartum experience like?
Laura Lulika: It was double-edged. The joy of having this new human and building this connection with them, figuring out the challenge of bodyfeeding together. I was exhausted but I love a challenge and it was an incredible experience.
On the other hand, my small support network crumbled around me. The pressure of the pandemic lockdowns and the stress some people felt from our baby's arrival meant that the people who I thought would be there to support me and who had supported me through my pregnancy had run out of steam and were unravelling. I felt extremely alone. I was mistreated by the people closest to me and I didn't have anyone to care for me while I cared for our baby and while I recovered from the c-section and week long labour. I felt a level of fear and isolation that I had never experienced before, inside my bones, because I wore the weight of the responsibility of caring for and feeding our baby and I needed support to be able to do that safely and I didn't have it. I had to figure out how to do it without support and with the added stress of other people's meltdowns. I pushed myself through but I'm paying an energy debt for it. Thankfully the same support network has managed to figure out their shit over time and the sicker I've become, the more their roles and responsibilities have become unavoidable but I still think it's a shame that it happened this way. There's definitely an inequality about the birth parent having little choice but to adjust to their new roles and everyone else gets to fuck around and find out.
I still consider the post-partum transition to be continual, even now 3 years later I have slowly discovered that I have experienced birth injury and complications. I did suspect at the time that the c-section was pretty bodged and the NHS is a lottery system. I've had two pelvic surgeries since giving birth, I've been housebound again for the past two years and I'm still in need of further treatment and more surgery. The birth, and the lack of postpartum care I received, has rendered me more disabled than I've ever been.
Olivia Dreisinger: How has disability and illness impacted how you approach being a parent?
Laura Lulika: Disability has taught me that I have no control over my body, that I can't predict anything or steer anything the way I want it to go. I try to observe and feel what my body needs intuitively, which is challenging when your focus is on the care of your new little family member and you have limited energy to be present in your body. I think my approach to parenting is similar in a way though, I see myself as being there to observe, support and respond, rather than try to make them do what I want them to do. They're teaching me just as much as I'm teaching them.
Children are the largest marginalised group in the world and are completely reliant on adults to access what they need to survive and thrive and we perpetually let them down. An obvious example of this is of course the multiple genocides and atrocities we commit on children the world over. We need to start actively connecting with and listening to everyone in our local communities, especially the most marginalised, and act on what we learn.
I love sitting on my stoop and listening to all the neighbourhood kids who come and chat to me about how they experience the world and what their dreams are and I often ask myself, how can I support their dreams? How can I advocate for these kids and the world they want to see? I'm so grateful for them and their openness, I learn so much from them. I have so little social interaction so I appreciate so much that they enjoy talking to me and hanging out in my garden. Disability has taught me the importance of being active in community and the need for community to be inclusive of everyone.
Olivia Dreisinger: What advice would you give other disabled people thinking about having a family?
Laura Lulika: All disabled people deserve to have family in some form and we have to be creative to build that in ways that are accessible for us and I hope that pre-disabled people can start to be more creative about how they can be family to disabled people too.
Disabled is such a broad term and everyone's situation is so different. I have so many friends who are disabled and chronically ill who are not able to have access to the children in their lives because of the risk to their health, especially since the pandemic, or they mourn the ableism that doesn't allow them to have the experience of parenting a child.
I was always told by doctors that I wouldn't be able to safely have kids biologically and now in hindsight I can see that no matter how determined I was to do what I wanted, they were in a way right. With the healthcare available to me, I didn't safely have a child. I ended up more disabled than I was before and my kid regularly expresses their sadness and disappointment that I miss large parts of their life. They're also really understanding, caring and nurturing and have an amazing level of knowledge about access, how everyone is different and has different needs and how that should always be received with care. My kid sends voice messages and photos to a few of my friends, many of them housebound, who aren't able to access kids in real life and they understand that a lot of my friends are disabled and housebound too.
I don’t know if any of this is useful advice, I hope it doesn’t sound negative. It's all really fucking hard and beautiful at the same time.
I guess a few short practical tips are, learn how to be really clear about your expectations and needs to your co-parents and support network, don't fold baby and kid clothes, get a grabber, horizontal parent as much as you can and need to, I have spent hours playing and chatting and connecting with my kid while I'm unable to move on the bed and I know those moments have been really important for both of us and our relationship, don’t feel pressure to be organising a ton of activities all the time or feel bad if you spend a lot of days not doing much, kids need to learn about rest and listening to their body’s needs too.
Olivia Dreisinger: Anything else you’d like to say?
Laura Lulika: Thank you for inviting me to share my thoughts! I hope everyone can start listening to and prioritizing the wishes of kids and young people locally and the world over and acting to advocate and support those wishes. Stop the genocides and free Palestine.