What Is Disabled Motherhood Like?

When I was in high school, my teacher asked the class…

…to carry around dolls for a week as a glimpse into parenthood. Everyone knew this was silly, since dolls are much easier than newborns, but we still cradled them on top of our notebooks and resisted the urge to stick them in our lockers during lunch (an automatic fail). When the experiment was over, and we had turned in our essays about the experience, my teacher called me to his desk.

In the essay I had turned in, I wrote that I most likely wanted kids in the future but I wasn’t sure if I was allowed to have them. He looked at me and gruffly whispered, “Allowed to?” with my words resting in his hand. I nodded. Then he said, “Don’t let anyone tell you what you’re allowed to do with your one life. I think you’d make a great mom someday.”

As a woman with cerebral palsy, the question marks I’ve had around motherhood have existed for as long as I can remember. I don’t have any pop culture references of an effortlessly calm disabled mom telling her child that it’ll all be better in the morning, or even everyday observations of visibly disabled moms running errands while their kids ask for cookies in the background. So, when I saw Rebekah Taussig, author of Sitting Pretty, open up on Instagram about her experience with pregnancy and motherhood as a disabled woman, it was like seeing a path forward that my teacher had once assured me was there.

Rebekah (pictured above) is mom to 10-month-old Otto in Kansas City, Missouri, and we chatted about what it’s been like for her to enter this stage of life. It has been beautiful and exhilarating and harder than she expected, but it’s also had moments of been-there-done-that familiarity, too. Here, she explains.

Kelly: How did you picture motherhood before having Otto?
Rebekah: Last Saturday, we had this perfect morning where Otto was puttering around the kitchen in his jammies and I was making scones. It was slow and quiet and my partner Micah and I even had time to do the dishes. And that’s how I had pictured parenting. I thought Micah and I could go on living our lives like we always had and our baby would just be tootling around, fitting right into our cozy house and established routines. I don’t know where I got that idea. I knew parenting would be hard, but man, the specificity of this challenge has a certain bite to it that I didn’t anticipate!

There are so many shows and movies that montage motherhood as, like, a pile of dirty dishes in the midst of complete contentment. Plus, kids are everywhere, so it’s easy to wonder, ‘How hard can it be?’
I understood that it was hard, in a sort of hazy way, because everyone says it’s hard. But no one really tells you how it feels on an emotional level. What’s usually said is you’ll never regret it and it’ll be the best decision of your life, and that’s it. I wish there were more nuance to this, because having a baby is such a big experience and there’s a certain loss to no longer having the life you once had. I don’t think that letting yourself grieve that loss has to diminish the joy that you find in being a parent. I love Otto; he’s truly a love I have never known. Being a parent is difficult and draining, but loving Otto is not. He is real-life magic to me — his cheeks alone! I am fascinated by every syllable that comes out of his mouth, and he doesn’t even know what language is yet. He exhausts the living life out of me, but I miss him when he falls asleep. I’ve been thinking a lot about how my experience with disability has built a very sturdy muscle around seeing loss and joy coexist. And I don’t feel like that’s represented in the experience of parenthood very well. I think that loss and joy coexisting has been so fundamental to my experience of disability and parenthood.

I think that’s true, and true of every milestone: the downsides are almost never discussed. Becoming a couple means letting go of some freedoms that come with being single, and graduating from school means stepping away from that well-tended bubble. And as far as disability goes, yes! It’s very much a ‘both-and’ experience, where you can be frustrated with your body but love it deeply and defend it entirely. How did you feel when you found out you were pregnant?
I was terrified when I found out I was pregnant, because I realized just how little I thought I would ever get pregnant. I had this rosy picture in my head about motherhood, but there was also a part of me that doubted my ability to do it.

I understand that. I don’t want to speak for you, but my initial relationship with my body was mostly formed in a medical context. I saw it through this lens of all the ways it’s not doing what it’s supposed to do, and how it could be fixed. It wasn’t a completely negative experience, but if that’s what you’re used to, then it’s jarring to think of your body as this capable thing that’s strong enough to make a baby.
That’s exactly how it felt. There was something strange about being invited into this motherhood identity that is so mainstream. I remember being in one of my early appointments and I couldn’t believe how many times the technician said the word ‘normal.’ I was like, ‘Oh! That’s not a word I’m used to hearing in relation to my body.’ My relationship with my body has always been about mending it so that I could stay afloat, and with my pregnancy, it transitioned from survival mode into this space of abundance. I wasn’t the only one who was worried about how the pregnancy would go — my doctors also were — but it ended up being very straightforward. I should also mention that Micah had cancer during all of this, which is its own chapter in the story. It was really interesting to see that my body, which everyone had perceived as weak, was thriving and creating this whole other person, and Micah’s body, which everyone saw as healthy, was fighting.

It seems like your body was saying, ‘Hey, you got this.’
Yeah, and even Otto was kicking up a storm those last couple of months, so he was sending a Morse code of, ‘Don’t worry so much, Mom.’ But, you get it. Even though there’s no medical reason why my body couldn’t get pregnant and deliver a baby, I just never saw it happening. I hoped for it, but I didn’t have a clear plan toward it. I understood it as this unicorn type of thing.

I don’t think I’ve ever had a doctor ask me if I plan on having kids, and I think outside of a doctor’s office, there’s hardly any representation of disabled motherhood. It’s hard to picture it without examples.
I think I grew up seeing motherhood and disability as opposites, like oil and water. As a kid, I didn’t know any disabled mothers, and I only met others now after seeking them out online. It makes a huge difference in what you can imagine for yourself. There’s so much out there about non-disabled motherhood, from what pregnancy is like to what raising a baby is like; and there’s nothing like that for disabled moms — I’ve Googled. In fact, a couple of months after Otto was born, I was watching a panel featuring disabled moms and a disabled lawyer. I learned that there are still laws in the books stating that a child can be taken away from a disabled mother for no other reason than she’s disabled. I’m not afraid that Otto will be taken from me, but the fact that this practice is still legal communicates what we’re talking about here: There’s a distrust of disabled parents, and that’s why it’s so hard for us as disabled women to navigate it.

That’s horrifying. The big reason why I wanted to chat with you is because you’re a disabled mom, and I also didn’t grow up knowing any. When I’m babysitting my two-year-old nephew, Cosmo, there are moments when I tell myself, ‘I can totally do this,’ and other moments when I’m like, ‘Nope, I definitely can’t do this.’ All moms must feel this way, but it has to be heightened for disabled moms. It’s one thing to understand my body, but it’s so much more complicated when I consider a baby’s relationship to my body.
It’s funny, because I think that was one of the first things that really surprised me about motherhood. So much of it is like, ‘This is hard, I’m not sure I can do this,’ but also, ‘Hang on, I recognize this feeling, I know how this goes.’ For instance, as soon as we figure out one thing about Otto, he changes and we have to figure something else out. And that’s what it’s like being disabled, right? My body is constantly changing the game on me and I have to reroute and find new solutions. At the moment, Otto is really struggling with sleeping, and I’m thinking, ‘Will I just be awake at 2 a.m. forever?’ But I know with my body, everything can be figured out and nothing stays the same. I will find the resiliency I need until it changes, and the same goes with raising a baby. I think my disability has given me the skill set to know how to work with unpredictability and frustration, and that flexibility and endurance flows over into motherhood well.

I also think, like motherhood, having a disability is like being in a secret club. You and I have never met in person but we understand each other on a deep and personal level. And that’s true with parenting, too. There’s a connection that forms, even between strangers, because of this experience. I was on the phone the other day with someone I didn’t know and they heard Otto fussing in the background and said, ‘Don’t worry, he’ll sleep, I promise!’ That’s familiar in the sense of knowing what it’s like to be disabled on some basic level, even if our disabilities are different. There are a million ways I was ready for motherhood without knowing it.

That makes me feel better! It’s almost like how friends have told me that it can be weird when a complete stranger comments on their pregnant bellies — that feeling is similar to when someone comments on my legs.
Totally, there’s an overlap there when it comes to the public’s attention. I was preparing myself for what it would be like to be pregnant and disabled in public, but we went into lockdown right as I was beginning to show. I was sad in a way, because I had bought all of these cute maternity clothes! So, I don’t know how it feels to be in a wheelchair with a big pregnant belly out on the street somewhere, showing myself as an example of two things that aren’t ‘supposed to’ exist together. I was really proud of my belly and I made Micah take a hundred pictures of me and my chair the night before Otto was born.

I love that, and I would be proud, too! How does Otto relate to your wheelchair?
I’m so used to my wheelchair being misunderstood as something negative and either completely erased from my perspective or obsessed over as the defining feature of my life. There’s so much about disability that’s widely viewed as a deficit when it’s really an asset, and Otto is learning that firsthand. He’s growing up with my wheelchair as part of the fabric of our dynamic, and he’s developing a relationship with this object as one of ease and comfort. It’s taking me off guard to get to share that positive bond with him. It’s almost like I didn’t even know how to identify that feeling until I watched him feel it. He gets to see my wheelchair as being so fundamental to how I interact with the world, and it’s very special.

That makes me really happy. It’s something I notice with my nephew Cosmo, too. The other day a ball rolled into a bush, and I couldn’t stretch myself to pick it up. Cosmo said, ‘Baby get it, Aunt Kelly!’ so protectively and climbed underneath the bush to grab it. It melted my heart. We’ve talked about how motherhood has surprised you. How do you think disabled parenting would surprise non-disabled people?
First off, that’s such a cute thing about Cosmo — my heart is melting, too. It might surprise people to learn just how ordinary disabled parenting is. It’s another version of parenthood that is as interesting and mundane as anyone else’s. There are things that make it particularly difficult, like the way that most equipment is designed for non-disabled parents or the fact that it’s an underrepresented part of life in general. But in some ways, I think disabled parenting is super ordinary.

I don’t want to assume so much about non-disabled people, but it does seem like there’s a lack of imagination happening around motherhood. Otto and I are figuring out our own way of doing things, and it might look different to someone who’s not used to it, but it’s very routine to us — it’s our own dance with its own rhythm, and it works.

Can you describe how non-disabled equipment is a challenge, and how you’ve accommodated your disability into daily routines with Otto?

As one example, I can lift Otto if I can rely on my arms, but I don’t have great trunk muscles so it’s easier for me to lift him up and toward me than up and over something. It’s amazing how much equipment is designed for standing parents to lift a baby up, over, and out: cribs, high chairs, and car seats are all like this. Micah and I had to do a lot of research and troubleshooting for each item. I can’t even tell you how many hours I spent looking for a crib that could sit close enough to our bed and provide the leverage I needed to lift Otto to me! We spent a few hundred dollars on one that looked like it would work, but when it was delivered and we had a chance to try it, it didn’t work at all. It was a very frustrating and defeating experience. Ultimately, we landed on a very basic Gulliver crib from IKEA and my brother built a door into the side so I could pull Otto to me. It works!

We had to find equipment that worked for Otto, too. I would have been happy with any number of wraps or carriers, but Otto was picky! It was really important for me to find one that worked for both of us, because I wanted to be able to carry Otto around without having to cradle him in my arms — this took months, because Otto did not like being confined by wraps. We tried Solly wraps and a Baby Bjorn before Otto settled into the Ergo we use every day.

And as for our routines, our most elaborate one is probably getting in and out of the car. He has to be in the Ergo for this. We get strapped up at home, then I swoosh us down the front-door ramp and pop the curb to my car. He usually holds our diaper bag in his lap, which is an old army satchel covered in patches that he likes to run his fingers over. I open the back door and pull my wheelchair right up to the car so that I’m parallel with the back seat. I push myself all the way to the front edge of my seat, then grip the ceiling handle to transfer both of us into the car. Then I unstrap Otto from the Ergo, and we share a little moment to talk about being outside. I usually give him some kisses before I strap him into his car seat with a swivel base (rotated toward me) and give him a few options for the toys he might want to play with during the trip. ‘Do you want to play with your crocodile? Your elephant?,’ I ask. He picks one, and I rotate his seat to face the back of the car. Then I transfer into my wheelchair, push myself into the driver’s seat, and break down my chair. I put the wheels in the back seat and the frame in the front passenger’s seat. Then we do the whole thing in reverse once we get to where we’re going! It seems like an elaborate process, but it’s our intricate and practiced dance.

So, I’m tearing up as you describe this. It’s like you’re helping me figure all of this out, just by figuring it out for yourself. Aside from more representation and the understanding that disabled motherhood can be just as ordinary as non-disabled motherhood, what would you want people to take away from our chat?
I think disabled mothers are never at the forefront of a wider conversation about what motherhood is and what it could be, and it shouldn’t be our sole responsibility to speak up about inclusion. We all deserve to have options and imagine new paths for ourselves. Parenthood can be a milestone for disabled people, if they choose it. And they should feel empowered to do so.

Kelly Dawson is a writer, editor and media consultant based in Los Angeles. Follow her on Instagram and Twitter.

P.S. How to navigate a special needs encounter, and becoming friends with a non-disabled person. Plus, Rebekah’s week of outfits.

(Photo courtesy of Rebekah Taussig.)