Lessons on Raising Children from Experiencing a Disability

After being disabled for six years, I decided to become a foster mom. To obtain a foster license, my doctor had to confirm my ability to parent.

I struggled with the idea of asking him.

The way I exhibit my disability fluctuates. When I’m not utilizing my wheelchair and sitting on a supportive surface, I might seem fine. However, my conditions — dysautonomia and Ehlers-Danlos syndrome — inflict continuous symptoms that complicate activities like sitting, standing, lifting, eating, driving, and walking.

My doctor was aware of the reality of my condition. He had seen my struggles and pain, witnessed me in tears on his examination table. He understood the difficulties I faced in self-care and how much I depended on meal delivery services and friends for support. I couldn’t fathom what he would say when I asked him to endorse my capability to care for another individual.

In his office, there were two seating choices: a metal chair with cushions and the examination table. For most visits, I would wait for him on the table, laying on my side, using my bag as a pillow. Sitting up in a chair is exceedingly challenging for me.

This time, I compelled myself to remain seated in the chair. Perhaps if I did, he would overlook all the previous appointments. The room began to sway and blur, my vision dimmed. I persevered.

Dr. Stern entered and took a seat. “What brings you here today?” he inquired. I quickly explained how thoroughly my partner, David, and I had contemplated the decision to become foster parents. The preparations, the funds we had set aside for childcare, his parental leave. Dr. Stern listened attentively and posed a few questions.

I responded as best as I could, but what I hadn’t fully grasped yet was that my experience of being disabled had equipped me to be a parent.

Prior to my disability 14 years ago, I pursued happiness and achievement with an obsessive and relentless zeal. For instance, while waiting for a response from a graduate program in 2007, I obtained my real estate license, hoping to make some extra income to support my education. However, my determination to excel had other intentions. Instead of merely saving for tuition, I became one of the top sellers in my large firm within my first year, established a new agency with other women in my second year, and was recognized as one of the top agents in the nation in my third year.

Such intense work demands regularly suppressing other physical and emotional needs. Sleep, comfort, and enjoyment were neglected. Even my vacations followed a precise schedule, including the finest dining, the most vibrant neighborhoods, and exclusive spots.

It comes as no surprise that my body didn’t escape the fallout. I exercised every morning, practiced yoga multiple times a week, and packed my meals with more nutrients than anyone could reasonably consume.

I became disabled one August afternoon while hiking in Santorini, Greece. A small detour led to heat exhaustion, which caused an electrolyte imbalance, triggering a dormant genetic disorder. The day before the hike, I had run and danced. The day after, getting out of bed was a struggle.

For two years post-hike, I searched for answers. When doctors dismissed my symptoms, I questioned if they were right. Was I simply overly anxious? After my diagnosis, I spent an additional two years grieving and acclimating to my new reality. I finally accepted that I would remain unwell forever. Yet, the way I defined myself gradually began to evolve. The term ‘disability’ started surfacing more frequently — in relation to my disabled parking permit, disability student services, and disability insurance payments.

For me, being sick was wholly about loss and suffering. However, being disabled introduced something different: culture. I became part of the lineage of disabled individuals who preceded me. I dove into literature and essays by authors who are disabled and/or write about disability: Eli Clare, Elizabeth Barnes, Julie Rehmeyer, Toni Bernhard, Jean-Dominique Bauby, Nasim Marie Jafry, Meghan O’Rourke, Leslie Jamison, Maya Dusenbery, Laura Hillenbrand, Rhoda Olkin, Cheri Blauwet, Erin Raffety, Amy Berkowitz, Nancy Eiesland, Susan Sontag, Madelyn Detloff, Rosemarie Garland-Thomson, Alice Wong, Leah Lakshmi Piepzna-Samarasinha, Elliot Kukla.

The insights and narratives of these authors altered how I perceived my own journey. I began to recognize that my disability had transformed more than just my physical abilities. The years following the hike released me from my intense grip on perfectionism. For so long, I had felt that my life was almost satisfactory, and I was inundated with feelings of inadequacy. But my disability fundamentally altered my viewpoint. Each day presents a challenge, and a fulfilling life reveals itself through our ability to connect with one another, savor positive moments, and share the realities of our experiences.

The allure of my life before disability misled me into believing that with sufficient effort, I could mold my entire existence into something ideal. My current days are slow, painful, and unpredictable. However, my fundamental belief about what a day should entail has shifted dramatically. I no longer strive for perfection or even joy. Instead, it’s about having the bravery to be honest with oneself.

Becoming a parent is not dissimilar to becoming disabled. Despite our best intentions, parenting is often chaotic and unpredictable. Embracing parenthood dismantles our illusions of control — or it will, if we allow it.

When I visualize the non-disabled version of myself with a newborn, I feel deep sorrow for both her and the baby. Those initial days of parenting are filled with uncertainty, stillness, and anguish. She would have fought against it all. She would have overlooked those moments.

Conversely, when my child arrived home at eight days old, I had been preparing, for years, to accept whatever came my way. I was skilled at spending days in bed. I was content to wait.

Thank goodness I was disabled when I welcomed my first foster child, who we later adopted, and then, seven years later, my second child. Thanks to this limited and aching body, I was genuinely able to be present.

Dr. Stern completed the paperwork. “A child will be fortunate to have you,” he remarked.

He was correct.

Jessica Slice is the author of Unfit Parent: A Disabled Mother Challenges an Inaccessible World, which releases tomorrow. Her writings have also been featured in the New York Times, the Washington Post, and Glamour. She resides in Toronto with her family.

P.S. Additional information on disability, including how to support children in navigating experiences with disability.

(Photo by Liz Cooper.)