Strengthening Parent Advocacy
About Me
Hello! I’m Cherylynne. My journey into disability advocacy began with my son’s early diagnosis (more on that below). The COVID-19 school closures were a turning poin, inspiring me to use my advocacy skills to help other families professionally.
Early intervention
In 2020, I joined the board of a special education advocacy group. Here, I realized the value of having my son diagnosed as a newborn. Evaluations were not a struggle to get. IEPs made more sense because we had annual Individual Family Service Plans, the early intervention equivalent to an IEP. And, despite my son’s rare condition, a national support group existed that gave us ideas of what to expect when he started public school at age 3. The founder of that national support group is my parent advocacy hero (more below.) As a vice president of the Seattle Special Education PTSA hearing from multiple families with different stories, I wondered “Am I lucky
It’s a system
As a vice president of the Seattle Special Education PTSA, I saw what the lack of system knowledge and examples of parent advocacy meant for families struggling with remote learning. Seeing firsthand how difficult it was for school districts to manage their special education system made me realize the importance of advocacy training for parents. Despite the best intentions of educators, therapists, and administrators, the system failed too many children.
Journalist by training
With a 20-year background working with national and local news, I know how to simplify complex topics, making them understandable and actionable for families. I’ve brought that skill to the boards of nonprofits aimed at preventing teenage substance abuse and providing intervention for women with substance use disorders as well as in my work with TEDxSeattle.
Change Agent
Discovering that my parent advocacy style is ‘Change Agent’ was not a surprise, as my operating principle is knowledge drives change. What about you? Did learning your parent advocacy style surprise you? And if you haven’t yet taken the Parent Advocacy Style Assessment, please do and share your thoughts.
A woman we had never met came to our aid. The groundbreaking work of Dr. Janine Cody made us more knowledgeable than that doctor and the majority of specialists we saw in those first few months. Dr. Cody became a parent advocate when a pediatrician dismissively diagnosed her daughter with a chromosome 18 anomaly years earlier. Refusing to accept his dire prediction about her child’s future, she returned to school to earn a PhD in genetics, developed the Chromosome 18 Clinical Research Center, and created what has become an international support group to connect families across the globe.
Her work meant that when our son was just six months old we attended the annual Chromosome 18 conference. On the first night, we met nearly a dozen families all of whom had a child living with the same unique chromosome 18 mix as our son. The next months—and years—were hard but those connections to families gave us guidance on what to expect. Dr. Janine Cody’s actions and the work she did gave me my first lesson in the power of parent advocacy.
My spouse and I were in the NICU, the neonatal intensive care unit, with our 10-day-old son, our second child. The neonatologist sat down, quite nervous, and gave us the diagnosis. Tetrasomy 18p. A rare anomaly of the 18th chromosome.
“The doctor said, ‘I’ve never heard of it. There are only 60-100 medically documented cases worldwide.’”
I burst into tears.
My introduction to parent advocacy
What does “Liberate Disability” mean?
My journey toward understanding ableism began in the hospital when I learned that my newborn’s diagnosis included intellectual and developmental disabilities (I/DD). While researching his rare chromosomal anomaly, I came across a parent’s post that didn’t use the term I/DD. Instead, it used the r-word. (Words have power, and I don’t need to write it out.)
That moment made me think of a young woman with Down Syndrome who worked as a bagger at my local grocery store. I remembered feeling uncomfortable around her, unsure how to respond to her friendly comments. Thinking about her and my son’s future, I realized I had a choice:
See my son as a person rich in humanity—and, by extension, see the humanity of the grocery store worker.
Or remain trapped in my discomfort, missing the opportunity to truly see my son for who he was and who he would become.
Years later, I learned there was a term to describe this choice: ableism.
Why "Liberate Disability"?
I don’t share this story as a proud moment, but as one of absolute honesty. Disability, having a disability, being disabled—these are simply descriptions assigned because the world struggles to support people who experience them.
When thinking of a business name and an available website address, the phrase “liberate disability” came to mind. It reflects the idea that disability is not the problem; the problem lies in the barriers and biases that society imposes.
The Bigger Picture
Just as the Human Genome Project revealed that, on average, a person’s genome is ~99.6% identical to the reference human genome (with the remaining ~0.4% accounting for individual differences), we must recognize that our differences are what make us uniquely human.
Liberating disability means:
Freeing ourselves from the limitations of societal expectations.
Embracing the full humanity of every individual.
Key Takeaways
Words have power. The language we use shapes how we see others and ourselves.
Disability is not the problem. The problem is a world that struggles to support people with disabilities.
Liberation starts with choice. Choosing to see and celebrate humanity in everyone.
“On average, a person’s genome sequence is ~99.6% identical to a reference human genome sequence; that person’s set of genomic variants accounts for the ~0.4% difference.”