When I was 20 years old, I worked at a group home for adults with developmental disabilities. It was 1990, and the national movement to close large institutions was finally being realized. The residents moving in were all chronologically senior citizens who had spent their lives either institutionalized or sheltered at home with aging parents.

We, the staff of the house, were largely a group of young, idealistic college students who were studying to be therapists or educators. We were led by a house manager who was fiercely protective of the people we were about to serve. She demanded that we treat them with dignity, respect, and humanity—and insisted we demand that same respect from anyone who walked through the door or anyone we encountered in the community.

On move-in day, we stood in the driveway waiting for the new residents to arrive, having spent weeks preparing the house and studying their files. We knew their diagnoses. We knew their medical histories. We knew their “limitations.” Or so we thought.

One gentleman in particular, a man with Down syndrome, was among the first to arrive. He was the first person I had ever met with that diagnosis. Everything I thought I knew about him from reading his chart was wrong.

He was a gentleman in every sense of the word. He was funny, thoughtful, and kind. He was deeply loved by his family, and he gave that love back with fierce loyalty. He had so much to say, if only the world would listen. I was shocked at how different he was from what his “objective” file had led me to believe.

Years later, when my son Lucas was born, I understood something profound. That gentleman had changed my life without me even realizing it. He planted the seed of defiance in the face of systems that seek to categorize and label human beings.

Every year on World Down Syndrome Day, I walk a fine line.

I want to celebrate the community I am honored to be a part of as well as all the amazing individuals with Down Syndrome who are so valued in their families, schools, workplaces, and communities.

But I am also mindful of those who were never given the chance.

There are entire generations of beautiful souls who were lost to institutions. Lost because of ignorance. Lost because of outdated science. Lost because of bigotry masked as “care.”

And I cannot celebrate how far we’ve come without holding space for the families who had to refuse the institution, fight for an education, and demand that the world see their child as someone worth loving, teaching, and knowing.

Those families are the shoulders we stand on today. And I feel deeply the responsibility to continue the work. Much progress has been made, but there is much more to be done, and new threats that didn’t exist before.

We are still pushing against outdated systems that treat our children as problems to be fixed instead of people to be empowered.

We are still have the responsibility to dismantle systems and approaches that value compliance over capability.

We still need to challenge educational, medical, and employment structures that fail to see the immense potential of all people with Down Syndrome.

This is not about services. It’s about listening, and loving, and respecting, and creating.

Today on Wold Down syndrome Day, and every day we celebrate the incredible people with DS who enrich our families, schools, and communities. Then, we act.

We honor those who came before us by refusing to settle.
We build new systems, new language, and new expectations.
We empower families. We elevate voices. We redefine what’s possible.

And we listen, truly listen. So often the world believes that because a person is non-verbal or has difficulty with speech they have nothing to say.

We can’t advocate for inclusion as a favor, instead we must demand belonging as a birthright.

On this World Down Syndrome Day, let’s celebrate with open hearts, but let us also rise with open eyes.

I am grateful to my Old Friend from all those years ago. Through his heart, he opened mine. He emboldened me to use my voice when he couldn’t find his. The gift of his friendship and lessons he taught prepared me to be Lucas’s mother. And being Lucas’s mother has brought blessings and community with people across this globe that inspire me everyday.

Together we turn hope into action. Together we redefine what’s possible.

Happy World Down Syndrome Day,
With all my heart,
Geralyn