Disabled Parents Interview w/ Emily C. R. Hill
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 fourth disabled parent of the series, Emily C. R. Hill. Emily is an artist and writer based in Vancouver, Canada. Her practice is multidisciplinary with a base in performance. She holds a certificate from Helen Lefeaux School of Fashion Design, a diploma in Textile Arts from Capilano University and a BFA in visual art from Emily Carr University. She has worked as an actor, costume designer and artist. Showing in Canada and the U.S.A. Forthcoming is Pom Pom Strokes at CSA in Vancouver, June 2025.
Olivia Dreisinger: What were your pregnancy experiences like? What was hard? What was good?
Emily C. R. Hill: My first pregnancy started seven years ago. As a timeline, I do feel like I have cellularly rebuilt myself anew, from the twenty-nine-year-old person I was then.
I remember being extremely naive, excited, and working full-time in close company as an artist assistant, through severe and secretive morning sickness. I would buy myself a liter of lemonade every morning, as it was the only thing that masked the unpleasant taste of throwing up so much for the entire first trimester.
I was stressed, mostly about housing, and throwing up constantly. I couldn’t really move after work, to make my own artwork for an upcoming exhibition I had at a small Vancouver gallery, Duplex. I remember the day I woke up, not about to vomit, and was so excited. I had just enough time to hustle out some work for this exhibition—about two weeks left to crunch.
I announced my pregnancy to friends and colleagues at the opening of my exhibition in September 2017, ritualistically working with some themes around making, vulnerability and pregnancy. I sang an altered lullaby of ‘Nun’s bridge is falling down’ as part of the exhibition performance. That experience set a bit of a tone to deep dive into my body as a life/art collapse.
A month before giving birth, I had an extremely uncomfortable rash break out, starting on my stomach, eventually covering most of my torso, and reaching down my arms. My midwives never called it puppp officially but it was an inescapable itching that lasted about two to three weeks. I did all the diy treatments for puppp, including ordering some ‘tar’ soap. I think it helped a bit. Thankfully, it calmed down.
My first birth kicked off at bedtime, at thirty-seven weeks, with me thinking I was leaking pee involuntarily.
The second pregnancy was more uncomfortable in a heavy way (but no barfing!). I was way too active with my almost two-year-old. I pulled a round ligament and couldn’t walk or move my legs forward at all, for two days very near the end.
It was also a pandemic pregnancy that caused a unique calm period between March-May 2020 just after my first turned two. My family of three had those two months in the most strict lockdown to get ready for baby number two.
I was very hypervigilant with the fear of contracting Covid-19. In hindsight, I adopted a medical type of perfectionism about hand hygiene and such that started a slow burnout. My second child came in a rapid birth, in line with a term “precipitous labor,” lasting only 3.5 hours at home, 4 days before the due date. There was less time for my muscles to adjust to birth, and a slightly bigger baby/longer term. The pain levels reached new highs from my first birth and I was surprised by how different, more intense, very otherworldly it felt.
Olivia Dreisinger: What were your birth experiences like?
Emily C. R. Hill: All in all I had two very similar births: home births, squatting in the bathtub. The births took place in two different houses, luckily fairly smooth and athletic-like in feeling. My partner was very supportive of me as a birth partner. I love Vancouver B.C. Midwives who, as a team, really felt like this rare wisdom to guide my birthing person experience. They gave me a lot of confidence. I wasn’t attached to having home births if that wasn’t how my cards fell.
Olivia Dreisinger: What were your postpartum experiences like?
Emily C. R. Hill: To quote a favourite writer, Maggie Nelson, on postpartum feelings, it felt like I had just been through:
a massive physical event that has literally rearranged her organs and stretched her parts beyond comprehension and brought her through a life-or-death portal
The body sensations hit so many new notes.
After my first birth, I was a bit stunned to find out my boobs were standby milk balloons, about to be overfilled a few days postpartum with 1980s style milk implants. My milk came in in just one boob after my first kid (latched one side only in the first 24hr! Beware!) and I lived with a D left and F right boob on and off untilI got pregnant again eighteen months later. Total vanity check. Symmetry is overrated anyway.
In the immediate postpartum, an enjoyable part was just feeling these new heights. A surreal bliss is maybe a sign/flag of mental health issues, but it was really fun!
My second birth conjures a severe warrior vigilance that was part pandemic lockdown and part newborn with a two-year-old. I have a hard time teasing out what a non-Covid backdrop would have looked like. I had to bounce back in a way that seemed unreasonable, but situationally necessary. The crash of social supports/some financial stability/health anxiety all came as a package. My partner luckily managed to stay employed and supported us, with reduced hours. He works for the local museum and there were talks of the place closing its doors completely in the early days of postpartum 2020. So just lots of loops were being thrown.
Both experiences I was so motivated to respond to this new teeny tiny baby, and fumbling through it for a bit. I am proud of what I achieved parenting. While I can thank my partner for being the parent to muscle the most good dinners, and keeping the basics of regular life moving (i.e. laundry hero and pandemic grocery hero), I became overly invested in moving our emotional development forward, to become the best parents we can be to some enormously sensitive and energetic kids (now I understand to be neurodivergent). My memory has this early phase with my first specifically being like a kind of over-energized ballet, fuelled by pure excitement and a dash of terror at the responsibility of getting to parent.
Parenting one, then parenting two felt more like it equated to 1 x10 as in = 10 kids. Something about being outnumbered and being between the conflict of two small siblings had a unique triangle that felt intense. My joke on parenting two was that it felt like my abilities shifted from running an esteemed anxiety-fuelled ballet—perfectly timed naps and playtimes and developmental activities—to now just running a low-key dive bar with spirit more than any planned choreography. Like everyone was having an okay time, but no more impressive moves. No more staying ahead of anyone’s needs including my own. I had read a bunch on having siblings close in age, and chalked it up to playing it by ear and going with the flow. (I did take some notes on tandem nursing from the La Leche League website, that was very helpful.) However, the reality of having the two of them, left in my hands shortly after giving birth, was way more severe than I had mentally prepared for. I had been able to stay ahead of my first child’s needs too well. I didn’t like distress or conflict. And now I couldn’t stay ahead of it, and I was kind of stunned by what it did to my nervous system. I was happily co-sleeping with both babies at first, but about a month into that I needed to get my two year old to co-sleep with my partner in another room because the kids would wake each other up. That was not working out well for my brain.
This all caused me to feel like I entered some kind of survival zone. I was doing a lot of activities like an efficient robot scared to lose momentum during the day. I was also being told by my doctors and midwives I was ‘coping really well,’ but had a lingering feeling that I was creeping towards a new level of burnout I hadn’t experienced before around 6 weeks postpartum.
Olivia Dreisinger: You disclosed to me that you received your diagnoses postpartum. What was it like getting a diagnosis after having children? Did this shift anything for you re: how you viewed your pregnancies? Being a parent?
Emily C. R. Hill: This section is probably a book, so the short answer is:
Thank you to my children, for uncovering the probable, generational thread of undiagnosed autism spectrum disorder (ASD) and ADHD (AuDHD to make it cuter). I am the first in my family to now have both of these neurodivergent conditions diagnosed. But, as it stands, they are considered very genetic mental disabilities. So, understanding this part of myself has helped tremendously to parent with the support of just knowing some of the dead ends and sensitives and having a map of my own brain type.
Understanding my brain in terms of vulnerabilities and strengths it might hold simultaneously seems like a good starting point. It seems like a lucky era for an AuDHD parenting community, with visible storytellers, disseminating first-hand experiences. Historically role models and information from people with lived experiences was even more inaccessible and stigmatized. Mental healthcare, through social media, is a bit of a shaggy world. However, I feel lucky to have self-publishing people to learn from and I highly recommend Casey Ehrlich, Ph.D who has first-hand experience with parenting with Autism and PDA: Pathological Demand Avoidance / Persistent Drive for Autonomy. She provides a model on how to navigate the difficulties of parenting while wearing both a parent and research hat. The goal is to help bring peace to nervous systems that idle rough.
Olivia Dreisinger: How has disability and illness impacted how you approach being a parent?
Emily C. R. Hill: Babies are so raw and I was very drawn to all the gentle/attachment/1developmental science/parenting memes and flow of info on social media circa 2018. The digital stream of information-overload really encouraged a motivational feeling in me, that this was going to be something I did, all in, for some time. Responding to this small person and looking for more opportunities to learn how to care for them in a very AuDHD information hungry way.
It was through this looking at my kids, looking at their needs, that I could see parts of myself in a new way. I could see sensitivities I had kind of abandoned in myself, but also noticed how, when pressured (like dealing with so much screaming), I internally acted like a triggered child.
When the postpartum with two small kids came on in full pandemic mode, I felt oddly lucky. Maybe it pushed me to a breaking point of not being able to meet my kids’ needs, and my needs ‘well enough’ by my own logic. It kind of felt like I was just burning holes in my brain and I couldn’t push aside the something that felt off anymore.
Maybe burning out is physically like intense emotions burning real holes in your brain? Metaphorically my brain was on fire with stress at some point in 2021.
When I started to be very concerned about myself, I also started reading more and came across Borderline Personality Disorder2 for the first time. If I try to describe the niche of medically recognized Borderline Personality Disorder, that is called ‘quite’ or ‘Internalized’ BDP, I would say it is a sweet and common affliction in sensitive people who have lost touch with their own basic emotions. We see a problem and quickly find a way to solve it, like a fire tries to find more to burn. It’s an efficient affliction.
I was a child actor and was coached to make eye contact and smile as a young professional trainee. I think pathologies rub many people the wrong way, but I actually got excited when I started to understand that my drive to do well, to mask, was kind of a self-preservation trick. Technically this is a severe mental illness or personality disorder.
Masking crosses over to an ASD coping strategy too. Once I was meeting with a psychiatrist, they brought up ADHD first and eventually ASD. I have suspected (still undiagnosed) that I'm very dyslexic since my teenage years, and knew I was compensating for things feeling more difficult than seemed reasonable in many aspects. However, I really didn’t understand the extent of this at all. I had developed very convincing masks to hide my own needs from myself and a sense of humour about my quick reflex to smile. I used to have a lot of anxiety attacks as a kid and I think at some point I cut myself off from the ability to have one, or very rarely. I feel like without knowing how anxious I was, there was just a cliff to fall down. There was no fence to notify me of my edges. I hope the next decades will untangle an old unhelpful stigma blocking mental health interventions as it is a vulnerability and human fragility that can feel so unstable (but so human).
I hope the future of healthcare will make better ties between undiagnosed AuDHD and BPD, especially in women who internalize often, as this is now part of my personal brain map.
My lowest point postpartum, I actually wasn’t suicidal. I have a gift or a curse to hold most of my storms inside, but I felt like I was about to blackout. I was holding in an extreme amount of rage, like I was drunk, and couldn’t remember the day, time, or anything easily anymore. I was still appearing to be ‘functioning well,’ but edging so close to some new cliff I didn’t want to trip down. I have seen two of my siblings experience psychosis, so I had a pretty good idea of where I didn’t want to land. I think of psychosis as an emotional car accident. It can do a lot of damage to the brain. Pacific Post Partum Society is a wonderful organization who I highly recommend new parents to reach out to. They really encouraged me to dig my heels in, and I fought tremendously hard to talk to a psychiatrist who actually specializes in personality disorders (hard to find). That proved to me that a lot of healthcare is very old-fashioned in recognizing what personality disorders (PD) might look like. PD’s unfortunately hide standard chronic depression and anxiety really well which prevents a lot of people who seem ‘efficient’ from getting supported. The people that diagnosed me were actually able to listen to what I was saying and understand. Extremely therapeutic.
I had previously, postpartum 2018, done some feminist narrative therapy and loved it. Post-diagnosis in 2021 I got access to a dialectical behavior therapy (DBT) group therapy that helped identify triggers and make space to process things I hadn’t let myself process I think.
I like a Susan Sontag quote on Personality:
Personality, that is, the presence of flaws.
Personality(flaws) + disorders(flaws) are like doubling down on negatives. I like the potential that people with ‘big’ personalities work on achieving the electrical -neg + -neg = +positive, and hopefully transforming an electric human experience into something that articulates what artificial entities try and fail to achieve. Unpredictably. Creativity. Humanity.
Pathologizing human flaws has a terrible history, one that makes sense to be fearful of. I had researched a medicalized term for 'Vapours' and ‘Hysteria’ that feminist histories are tangled up in as a psychological horror genre. What is inflicted on people just for existing as femme in a patriarchal society remains a Shakespearean tangle. It distorts things. Many feminists reject the DSM entirely, but I think the goal set for me is to tease out whatever helps.
The brain, as a material, has pathways and the highways or medicalized ‘disorders’ seem like quick and dirty fixes to get things done. I do think DBT has given me many more scenic routes for my own highway thoughts, like a DBT recipe book. I like to think of therapy as a way to tend to the quality and enrichment of the soil we have access to as a person. (The soil here being our brain.) Is it paved? Dry? Or nutrient dense land for growing new thoughts? I encourage everyone to get in the dirt when it comes to the brain.
Olivia Dreisinger: What advice would you give other disabled people thinking about having a family, or about parenting?
Emily C. R. Hill: I am very grateful for the experience of being a parent. I value, in humanity, in art, to be openly vulnerable. Being a parent makes you extremely vulnerable in new ways, that can feel like too much. I think of disability like personality, that is, the presence of flaws. It’s an honor to identify with and so very human. Any advice I would give might have to be as general as for people with just a personality too.
When I’m really struggling personally with the demands of having a family as a person with a disability, I try to remember being a child in a family. I aspire to be an adult that I would have always felt safe with. I keep my values close to heart. I also hope to experience my flaws, disabilities, and challenges as I would want my kids to—as just human qualities, both expected and acceptable. I want to model a deep willingness to repair my relationships, with my kids and others when I do make mistakes.
I wouldn’t want my children or anyone to feel pressured to become a parent. It would be best as a very open question, a choice. It can still feel too scripted that parenting is the aspiration of adulthood in subtle and unsubtle ways, while simultaneously rejecting the art world bias of birth not mixing well with art.
A gift of parenthood is seeing how impossibly precious and opaque each little human life is, while also being in awe of anyone who takes on the soul-work of parenting.
Attachment parenting course, often given at local family place centers and neighbourhood houses: https://www.circleofsecurityinternational.com/resources-for-parents/
Emily recommends https://pathwayssmi.org/education/family-to-family-course/. Borderline Personality Disorder was covered well in this free course she took.