“Just ask me, I know my body best.” Wise words from my teen daughter, Sofia, who has a diagnosis of mild cerebral palsy. While I have more life experience than she does, it’s my girl who has the lived experience.
My responsibility to raise her to be her best self means modeling strong values, nurturing her growth in a positive environment, and talking to her about issues so she is a critical thinker. It also means listening to her. It’s Sofia who is teaching me what it means to show up and work to build a world where people with disabilities are given equal opportunities to thrive. Disability does not mean a lack of potential.
Today, March 25, is Cerebral Palsy Awareness Day, and I’m proud to share a little about our journey to advocacy and acceptance.
An Accidental Ally
When I became a mom, the phrase “Your daughter has cerebral palsy” was not on my bingo card! As I dug in and began to learn more about CP, I realized that most of what I thought I knew, was wrong. CP is non-progressive. It’s a very broad diagnosis that impacts each person uniquely. This was Sofia’s floor, and no one could tell us where her ceiling would be. When she was prescribed a walker at 3 years old, we would take walks through our neighborhood. She commented that people were staring but not saying hi. As you can imagine, this broke my heart a little bit. I challenged myself to find a way to both motivate her stepping, and encourage others to look beyond the device and see my incredible daughter.
The result? A home-sewn walkercape with a leotard and tutu attached, to reflect her interest in ballet (she had just started lessons at TutuSchool). The response from Sofia was electric, but the real magic was that people began to comment on the fun design and ask about her interest in ballet. I believed it could make a difference for others, and launched the nonprofit WAWOS (We’re All Working On Something). In eight years, this all-volunteer national charity, based in San Francisco, has given away 5000+ free walkercapes, called WAWOS Wear, which spark conversation, connection and community. A sister organization, WAWOS Canada, is headquartered in Toronto.
In addition to the flagship walkercapes initiative, our WAWOS Wishes program awards directed gifts to other nonprofits across the US that are making adventure accessible for people with disabilities. We’ve awarded more than $240K to over 80 nonprofits to help them bring adaptive sport, dance, and art to more families. Our WAWOS Community Events provide VIP experiences to kids and their families at world-class events, and our WAWOS in Schools program engages with neurotypical kids because it’s proven that inclusion education is essential to youth awareness of how to best be supportive to differences and to create a sense of belonging for everyone. This really reflects our belief that “it shouldn’t have to happen to you, for it to matter to you.” The reality is that whether you’re born with a disability, or acquire one through illness or accident, each one of us deserves to be seen for our full selves.
A Bright Future Beyond Disability
Sofia is vibrant, engaging, joyful and curious. She knows that cerebral palsy, a condition that affects her motor skills and muscle coordination, is just one part of who she is — not something that defines her. She moves through the world in ways that challenge misperceptions about disability.
My daughter’s interests are as diverse as any other child’s. She has a particular love for indoor rock climbing, an activity that challenges both her body and mind as she finds routes up walls with determination. When she’s not climbing, she may be reading a great fantasy book, trying out a new recipe in the kitchen, or working on a programming project. She and my husband, Jeremiah, share a passion for robotics; exploring a world of possibilities and invention in the digital and mechanical realms.
Sofia has also used her voice to provide Motivation Monday, Tuesday Tips and Wellness notes across our nonprofit’s social media. Representation is important, and she wants to empower others to show up to the world completely, without concern of judgment.
Challenging Misperceptions and Creating New Narratives
I know the work for equity extends beyond physical accommodations; it’s about breaking down the mental and societal barriers that too often prevent individuals with disability from having the same opportunities as everyone else.
My experience as Sofia’s mom encouraged me to take a look at my own biases and blind spots about what is possible for someone with a disability. As a mother, it’s hard to let go of the protective instincts that often come with raising a child - whether they have a disability or not. I know my daughter is more than capable of standing up for herself and she knows I’ll always be here as a support to facilitate her independence.
Through this process, and through the mission-driven work with WAWOS, I’ve found a deeper connection with other parents, community leaders and friends. I understand that the key to true advocacy is listening to those who experience disability firsthand, rather than assuming what’s best. This has shaped the way I approach inclusion—not from the perspective of someone who is “helping,” but as an ally who recognizes the value in everyone’s contributions.
