All Parents Could Benefit From The Creativity & Ingenuity Of Disability Culture

Before I became a parent, I watched friends, newborns in their arms, skip-walk around the room until their babies fell asleep. Others sat on exercise balls, rocking and bouncing to ease out one last burp. I can stand for about 30 seconds before my vision starts tunneling. I can sit upright, unsupported, for three to five minutes. “What will I do when my baby cries?” I wondered.

Before becoming disabled, I assumed that if I didn’t function well in the world, the problem was with my discipline or perspective. I told myself that I should be able to sit in an airplane seat, wait in a line, or drive a car. When my pain shouted, every second of the day, I tried to ignore it. I assumed, for 28 years, that every person felt like I did but that they didn’t complain.

While driving, I used to curl one leg under me, and stuff tiny rubber balls behind my back, rolling them over the knots of pain along my spine. Waiting in lines, I shifted back and forth, trying to relieve the throbbing in my feet, my hips, my back. I took yoga, got massages, tried new shoes, bought new cars, and still I hurt. Once, after a neighborhood board meeting, I leaned against a knobby banister for some pressure against my screaming back. I swayed back and forth while chatting with an acquaintance until they finally asked what I was doing. I was doing what I always did, quietly looking for a moment of relief. For all those years, I blamed myself for not adapting.

At 28, when my yet-undiagnosed genetic condition, Ehlers-Danlos syndrome, led to a secondary neurological condition, dysautonomia, I could no longer ignore my body’s sensations. In addition to aching, I became lightheaded, feverish, and nauseated. My body simply refused to stand up. But, even then, despite fluctuating blood pressure, a rapid heart rate, tunneled vision, and faded hearing, it took years to accept my new reality. Every day, I woke up and thought I might be better. Every new doctor, supplement, or test might have a solution.

I didn’t get better, and, eventually, I started the process of accepting my body as it was, not as I thought it should be.

It was years after I became sick that I began identifying as disabled. For me, sick came with assumptions — that the goal was to become well, that there was a way that I should be and a way that I was. That something was temporary about the way that I felt. Learning about disability culture and the hard work of the disabled people who came before me shifted the way I looked at my body.

Instead of considering every new episode of weakness or nausea a fluke or failure, I considered these sensations part of what it means to live inside my body. I stopped being surprised. I stopped waking up each morning thinking: “Today is the day. My body will fit in again.” Instead of believing that I should be able to walk but growing too dizzy to do so, I accepted that my body, as it is, cannot walk. This is not the same thing as giving up.

My acceptance and identity as disabled brought tremendous freedom. I stopped trying to shoehorn my body into the world and started to adapt my world to my body. For years, every time I drove, I became so dizzy that I feared for my life and the safety of other drivers. So I stopped driving. There was freedom in admitting that I was too disabled to drive.

When I developed dysautonomia, I became incredibly sensitive to heat, suffering from heat exhaustion anytime ambient temperatures exceeded 73 degrees. Despite the frequency of those scary episodes, I regularly put myself in situations in which I became too warm. “Maybe this time will be different,” I thought. Identifying as disabled allowed me to accept that my body simply cannot thermoregulate well. It’s not a matter of willpower. I now ask about the temperature in advance. I no longer sacrifice my safety because I think I should be able to handle 74 degrees.

I started the process of accepting my body as it was, not as I thought it should be.

Identifying as disabled altered my view of the world. I no longer looked at its structures and assumed that they were made for me. I considered everything with fresh eyes: chairs, cars, buses, airplanes, beds, shoes, showers, toilets, dishes. When I ride in a bumpy car, my ribs dislocate. I’ve accepted that. Cars aren’t made for bodies like mine. There is a lightness in acknowledging that another person’s experience of potholes is vastly different from my own. But mine is not the only body that doesn’t work in a car — products are designed for one type of person, usually a thin white man, and everyone else has to adapt. For example, my short nondisabled friends have implemented a variety of creative solutions so that they can see the road and reach the pedals when driving. Cars don’t work for them either.

My identity as disabled introduced me to disability culture, which brought with it some of the greatest gifts of my life. Among them, a spirit of ingenuity and creativity. Because disabled people live in a world that does not work naturally with our bodies and minds, we become inventors and collaborators. We are constantly reexamining objects, routines, expectations, and equipment. We start at the beginning. What do I need? What is available? What can I create?

Even getting my wheelchair was a process of innovation. First, I accepted that I could not walk. After years in cardiac rehab, trying to train my heart and brain to support extended time upright, I accepted that I could not willpower myself out of my disability.

It was the spring of 2014, and I wanted to visit the botanical gardens near my house. I had tried the week before but only made it a few feet from the parking lot before lying down on the path. It was the flowers I couldn’t walk to that motivated me to purchase my first wheelchair, manual and inexpensive. That evening, my boyfriend pushed me around the tulips. That moment was a revelation — there were ways to bridge the gap between the world and my body.

Two years later, in Trader Joe’s with the same wheelchair, I bickered with my (new) boyfriend, David. I am not strong enough to propel my own manual wheelchair, so he was pushing me. I wanted to stop and look at the cereal, but he couldn’t hear me over the din of the store. “Stop here,” I kept shouting, while other shoppers turned to stare.

Museums were the same. I craved independence — to stop and take in art at my own pace. I was tired of watching my desires float by because I was too fatigued to verbalize them. I wanted to wander a store on my own and pick up items and put them back and go at my own pace. That night, after Trader Joe’s, David and I talked. I said that it was important to me to find a way to visit a store alone. I needed a mobility device that could propel itself and that I was strong enough to remove from the car and set up.

I started to ask the questions that I have grown used to asking daily: What do I need? What can my body do? What is the world like? What are the options?

We found a lightweight electric scooter that, on a good day, I could lift and assemble without help. I was elated. For the very first time, I could wander Piedmont Avenue in Oakland, window-shopping. Because of my dysautonomia, I could only sit in that position for five to 10 minutes, which still felt like an improvement. Sadly, it wasn’t long before I started to notice ways in which my body and the scooter were not compatible, and I passed it along to another disabled person with different needs from my own.

Disabled parents are experts at telling the truth about what we need and what we can handle.

It wasn’t until years later, when David and I were parents and had signed up our baby, K, for a dance class at the local studio, that I considered mobility equipment again. Parking at the studio was limited and my body couldn’t manage the seating for more than a minute or two. I realized I would miss her first lesson. David and I, again, lay in bed talking about what my body needed and what the world had. I said that I wanted to take K to the zoo when she was older. And attend her school concerts. I wanted to be there. “There has to be a way to drive around on a mobile bed,” David said.

I started to research reclining power wheelchairs. My scooter had weighed less than 35 pounds, and the chairs I was considering exceeded 400. A new chair would mean a new car — one that had been adapted to load and transport adaptive equipment. At this point, I had fully accepted that I was disabled and Medicare would pay for the wheelchair, but the van to transport it would cost more than $50,000.

David had a well-paying job and I had, after years of fighting, received backpay for a disability claim. We had planned on saving that money for K, but, however painful, we could afford it. And my wheelchair changed my life. It is well-cushioned, reclines fully, and has facilitated countless memories and moments with my family.

Granted, a power wheelchair for someone who cannot walk for more than a minute or two is not an outside-the-box idea. In retrospect, it’s quite obvious. But the process of accepting my needs and seeking solutions has been a training in disabled innovation.

When a disabled person becomes a parent, we are prepared to problem-solve. When parenting feels impossible, when the solution isn’t obvious, we draw on our years of experience to take it one step at a time. We start at the beginning; we make no assumptions.

I wonder, sometimes, how I would parent if I were single, living alone. It’s hard to imagine, but I believe that I’d figure it out. Like disabled people everywhere, I would call on my deep resourcefulness and well-practiced innovation. K and I would adapt to each other. In the spaces where I’d need help, I would find help. We’d take the city bus to school. Instead of a homemade lunch each day, I’d pay for the school-made meals. K would rely on me for companionship with puzzles and books but would learn to play with neighbors when she needs to run and jump.

I make this family better. Even though I must remind myself of that often.

But, in this family, which I am thankful for every day, we have a routine that works. I make this family better. Even though I must remind myself of that often. Despite my hard-fought beliefs about my value as a disabled person, I still carry a deep feeling of inadequacy around when it comes to parenting. I feel guilty for needing to rest. When I start to get lost in those feelings, I force myself to think about the internalized messages that breed them.

Is my sense of failure based in reality, or on the tired archetype of the superhero mother? In the day-to-day waves of inadequacy, I try to check in with myself to find the root of my fear. I try to imagine myself talking to another disabled parent the way I can talk to myself.

Sometimes, I have enough perspective to consider how the creativity that I have developed as a disabled person has helped me as a parent — and has helped K as a child. I wonder what a nondisabled person might find, if they had the freedom and practice of starting at the beginning. If everyone considered that maybe our society wasn’t designed for our comfort or survival. If instead of thinking that it should be possible to parent without a community, work full time while breastfeeding, and manage months of sleepless nights without relief, parents could really consider:

• What can I handle?
• What can I change?

I wonder how much time nondisabled parents spend making the assumptions that I did when I was in pain for decades. That life is easier for everyone else and that they just aren’t tough enough. What would happen if we had the space to express what it’s really like, make no assumptions, and invent solutions that really work? How would parenting shift if we finally admitted something must change?

Disabled parents are experts at telling the truth about what we need and what we can handle. And from that place of honesty, we are skilled at finding answers. We research, we consider, we make no assumptions. We ask for help and advice and share what we’ve learned. We create a life.

Jessica Slice is a disabled author, speaker, and essayist. Unfit Parent: A Disabled Mother Challenges an Inaccessible World has been shortlisted for the J. Anthony Lukas Prize and is available now. Jessica has been published in Modern Love, The New York Times, The Washington Post, Alice Wong’s bestselling Disability Visibility, Glamour, and Cosmopolitan. She lives in Toronto with her family.