This Mother’s Day, I will hug my boys a little tighter. From the peak of my career to becoming a mother with a disability, our family’s journey has been unexpected and unusual. Our bond is strong, but I am constantly reminded of how society undervalues parents like me.
After five devastating miscarriages, I am finally the mother of two healthy boys, ages 15 and 17. When they were young, our world changed: I was diagnosed with Arnold-Chiari Malformation, a traumatic brain abnormality that ultimately left me with spinal cord injuries and reliance on a wheelchair and caregivers to perform my daily activities.
After my disability left me severely impaired and limited, the unthinkable happened: People questioned whether I could properly care for my children. At my darkest moments, school officials who had previously praised my parenting skills questioned whether I was up to the job. They told me that if I couldn’t parent, I needed to seek help from organizations that might try to take away my parental rights. As I relearned basic functioning, I also had to wrestle with the terrible fear of losing my sons.
Unfortunately, my story is not uncommon: having a family is considered a basic human right, but parents with disabilities experience discrimination that has real-world consequences.
Parents with disabilities, especially those with intellectual and developmental disabilities, experience shockingly high rates of referral to child protective services. To make matters worse, up to 80% of parents with intellectual disabilities lose custody of their children due to perceived inappropriate behavior rather than evidence of neglect or abuse. Mothers should not have to prove that their children are theirs, yet this humiliating requirement is frequently imposed on many people with disabilities. The weight of that fear leads many to choose not to have children. For me, as a Black, disabled, Afro-Latina woman, this presumption of incompetence as a mother is multiplied.
My children endured extreme bullying from their peers and parents. “How can you be a kid?” they asked. “You don’t have a real mommy.” I missed upstairs classroom activities and chaperoned field trips, and my boys constantly questioned me about my absence. They asked me, “How do I tell these people that they’re OK?” We brainstormed and created a vision board, which inspired me to write the book. This book gave them the tools to respond to criticism and bullies and share their lives with the world with confidence and joy.
Open Image ModalThe author and his sons pose with a book the author wrote after he became disabled.
Courtesy of Yvette Peggs
Our experience was both a motivating and an insidious force. As the parents who had been the primary day-to-day caregivers for our sons before our diagnosis, our situation was viewed as a family problem, and school officials considered us a burden because the standard of care had changed. To prove our capabilities as mothers, we had to pretend to be recovered until we were ready.
During my rehabilitation, I faced microaggressions for asking for minor help. When I left my sons with family during major surgery, this was treated as weakness, not strength. Even when my sons were little, people would talk to them instead of me, which is common for people with disabilities. Every day, I feared that authorities would see my trembling hands and declining cognitive abilities as signs of unforgivable neglect. I taught my sons to stay close to me and hold on to my wheelchair because I was afraid to leave them alone.
Before my disability, I was the epitome of a “super mom” who did it all while my husband played the role of “fun dad.” But our new reality forced us to rethink our parenting roles. My husband had to be more intentional about being involved and learn basic childcare duties like feeding and bathing. In return, I opened my home to friends, neighbors, and church members to help me out while I recovered.
I grew from supermom to a dedicated, patient parent. I didn’t rush anything because it couldn’t be rushed. I read to and talked with my kids. I took them to therapy and disability sports events. Before I learned to drive again, I would drive them to school in my wheelchair and walk/roll a mile home with them.
I savored each milestone, even the tantrums and counting to ten. Frustration turned to amazement at how well my boys were developing. I created a child-led learning environment, using home routines and nature as teaching opportunities. I also let my children teach me, which was made easier by my wheelchair, which was always at their eye level. My disability naturally became a powerful bonding tool.
I embraced my vulnerability and wasn’t ashamed to show my disability to my boys. In the early days, when I had a seizure or vomited, my husband would close the door to protect our boys while my youngest waited anxiously on the other side. Once we were safe, I let my husband in and let my two boys decide how much they wanted to know about what I was going through. My youngest helped me wipe my face, and my oldest waited until I felt better to rub my back. As my brain surgery healed, I let my boys feel my stitches and draw them on paper to help them understand what happened. I wanted to be strong for my boys, but they ended up being strong for me.
Although I live with chronic pain, I continue to be active with my children by substitute teaching at school and volunteering to help those less fortunate in my community. A nurturing home is beautiful and empowering for both parents and children. I have seen their emotional intelligence and compassion blossom.
The painful prejudice we faced could have crushed us, but instead it became a gift. We went from being the subject of harmful gossip to being models of unwavering perseverance every time the wheelchair accessible van arrived at our school. My sons learned empathy, advocacy, and caregiving and became my unwavering support system. Now, as teenagers, they are advocates who proactively make way for my wheelchair before I arrive. They proudly introduce me to their friends and teachers and say, “Meet my mommy!” They taught me to embrace our disabilities and find strength in our stories. Whether it was the Miss Wheelchair USA pageant or a TV interview, my kids always say, “Wow, Mommy, now I can reach so many more people.” My disability became my superpower in parenting.
Open Image Modal The author and her sons told her sons’ classmates in 2014 about her brain injury.
Provided by Shepherd Center
This Mother’s Day, I celebrate so much more than being a mother. Our lives may be non-traditional, but they’re filled with joy and bound by a deep respect for one another. My sons are my biggest fans, and I always will be theirs.
Disabled parents are resilient, but many lack the resources and support. Many isolate themselves for fear of being reported or their disability being used as a weapon. This is why we desperately need systemic reforms to support disabled parents and protect them from unfair judgment and family separation. We should reach out to help, not hurt, first. More stories that normalize disability within the family unit are essential to shifting cultural values.
It’s important for non-disabled parents to communicate inclusion and demonstrate allyship early on. Invite people with disabilities into your home. When your child asks about accessible spaces like a wheelchair or a “big stall” in the bathroom, teach them about selflessness, access, and acceptance. Parenting is hard enough, so don’t make it hard for others. Nurture your child’s natural curiosity with empathy and kindness — qualities I’ve tried to model as a disabled mom.
I hope my family’s journey makes a difference for others with disabilities who are parents or want to be parents — our dreams matter, and we, like everyone else, have a right to experience the universal joys and struggles of parenthood.
Dr. Yvette Pegues began her career as a scientist and became an activist after suffering a traumatic brain injury and spinal cord injury. She is a Disability DEIAB (Diversity, Equity, Inclusion, Access, and Belonging) Executive, Engineer, Diversity Champion, and Keynote/TEDx Speaker. She is also Co-Founder and Chief Diversity Officer for Your Invisible Disability Group and a Board Member for The Arc of the United States. In her spare time, she plays over 20 adaptive sports and believes activism is a form of activism.
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