The Disability community, like other marginalized groups, continues to fight against systemic discrimination, what we call ableism. Yet even within progressive spaces, disability is too often left out of the conversation, and well-intentioned policies can reinforce exclusion when they are made without input from those most affected.

As a queer Disabled man, I know our lives are complex and intersectional. Many of us, like members of the LGBTQ+ community, grow up in families that don’t fully understand the discrimination we face. We create chosen families, safe spaces, and networks to navigate systems not built for us. We carefully consider when and how to disclose our disabilities, knowing the risks involved.

When I first talked about Disability Pride, some non-disabled queer folks asked, “How can you be proud of a pathology?” I reminded them that homosexuality was once listed as a disorder, too. Paradigm shifts like that matter.

Yet even as we’ve made progress, Disabled voices are still sidelined, especially in policy. Could you imagine NOW being led by a man “because no capable woman was available”? Or the NAACP being staffed entirely by white people? It would be unacceptable and yet, disability-led organizations are often marginalized in both funding and influence, while decisions affecting our lives are made by people without lived experience.

This disconnect is especially evident in New York’s ongoing work on the Olmstead Plan. While Governor Hochul’s appointment of a Chief Disability Officer signaled change, lower-level agencies, especially the Department of Health have failed to make the paradigm shift from viewing us as “patients” to recognizing us as a marginalized community seeking justice and freedom.
Disabled New Yorkers have led transformative initiatives, from developing CDPAS to defending Medicaid and expanding community-based supports. But instead of being seen as policy partners, we’re often treated as critics.

That’s a missed opportunity for everyone.

As we face a tough budget cycle, we believe in the power of reform. Crises can create leverage for change if leaders are willing to listen. Whether it’s reimagining managed care or right-sizing institutional systems, these are chances to realize Olmstead’s vision and build a more equitable New York.
But that starts with a simple truth: Nothing about us, without us.