Over the last few days, millions of Americans have watched a heartbreaking controversy unfold involving a social media influencer who publicly shared that he and his wife chose to abort their son after learning he had Down syndrome.

Like many people, I was saddened by the story, but I was also frustrated. Once again, I watched thousands of people argue about Down syndrome without hearing from people who actually have it.

I am not a parent of a child with Down syndrome, nor am I a doctor who treats them or a politician who represents them. I am a person with Down syndrome. And I am tired of being talked about instead of being listened to.

For decades, society has sent people like me a dangerous message: that our lives are somehow less valuable, less meaningful, or less worthy than the lives of everyone else. The reality is very different.

I own a successful business. I employ people. I pay taxes. I travel across the country speaking about inclusion and entrepreneurship. I have friends, dreams, goals, and a life I love.

Most importantly, I am not an exception. Across America, people with Down syndrome and other disabilities are working, starting businesses, raising families, volunteering, serving their communities, and contributing in countless ways. Yet despite all of this progress, our country’s systems continue to treat us as second-class citizens.

Too many people with disabilities remain trapped on waiting lists for services for years or even decades. Many are forced to live in poverty because outdated government rules punish them for saving money, getting married, or pursuing careers.

Parents are often told what their children cannot do instead of being shown what is possible.

And too often, the public conversation about disability begins and ends with limitations rather than potential.

That is why this moment should be about more than one family’s decision. It should force us to ask a much bigger question: Why are so many Americans still being told that disability means a life without opportunity?

The problem is not people with disabilities. The problem is a system that has failed to provide the supports, opportunities, and pathways to independence that people deserve.

When families see long waiting lists, inaccessible communities, broken employment systems, and benefit programs that punish success, they are seeing the failures of public policy — not the limitations of their children.

America can do better. That is why I support the Campaign to Fix the Disability System, a national effort led by Able Americans and people with disabilities who are working to modernize policies that have kept millions of Americans trapped in dependence instead of empowering them toward independence.

We need policies that promote work, savings, homeownership, entrepreneurship, and community living. We need disability services that are portable and accessible. We need to eliminate outdated benefit-cliffs that force people to choose between economic security and essential supports.

Most importantly, we need to ensure that people with disabilities have a seat at the table whenever decisions about our lives are being made.

For too long, society has asked whether people with Down syndrome deserve a chance. The answer is simple: We do. The better question is whether our country is willing to build systems that allow every person to reach their full potential.

I know what is possible because I am living it. I am not a diagnosis. I am not a burden. I am not a tragedy. I am an American, a business owner, and a woman with Down syndrome, and my life has value.

It’s time we started building a disability system that reflects that truth.

Collette Divitto is the founder and CEO of Collettey’s Cookies, a national disability advocate, Coalition Member of Able Americans’ Campaign to Fix the Disability System, and a woman with Down syndrome.

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