New York is dismantling, piece by piece, what took decades to build toward a quality of life every person with a disability deserves. Independence Care System, the only Health Home in this state built specifically for people with physical disabilities, has closed. Senate Bill S1918 and Assembly Bill A9205, which would create the state’s first specialized Health Home program for adults with physical disabilities, remain stalled, waiting for enough legislators to recognize what our community has been saying for years. And now my phone rings at all hours with people who do not know where to go next for a wheelchair repair, a home care authorization, a doctor who understands their body.
I do not mind those calls. What benefits my community benefits me. Their challenges are my challenges, and being their voice when systems fail them is not extra work. It is the work. But no one should need my phone number to survive a policy failure. No one should depend on the right advocate to get a wheelchair fixed or care authorized. That is not a system. That is luck.
If your ability to live independently depends on luck, you do not have civil rights. You have conditional access. Whether we receive enough home care, whether a wheelchair is repaired before it strands us, whether we can find a disability-competent physician, or whether we remain in our communities instead of being pushed toward institutional care depends on forces outside our control: geography, budgets, bureaucratic discretion, and whether the right decision-maker happens to hear our story.
That is not how justice is supposed to work. It is how disability policy has been allowed to function. What should be guaranteed through civil rights is left to chance.
The first kind of luck is chance. None of us chooses the circumstances into which we are born or the events that change our lives. We do not choose disability, our family, or the community in which we grow up. What follows should never depend upon fortune. Whether a person with a disability can remain healthy and live independently should be determined by equitable public policy, not by chance. Disability is not the policy failure. A society that understands what people need and refuses to provide it is.
For decades, people with disabilities have relied on fortune rather than infrastructure. We hope insurance approves the equipment we need. We hope enough home care hours are authorized. We hope an elevator works or an Access-A-Ride vehicle arrives. Hope has become a substitute for policy, and chance has become a substitute for justice.
The second kind of luck comes through motion. For people with disabilities, movement is not always physical. Motion is organizing: testifying, writing, voting, attending hearings, building coalitions, and refusing to let others define our experiences without us. But movement alone does not guarantee justice. We can organize and still be ignored. We can testify and watch legislation stall. We can explain what our community needs and still watch decisions get made without us in the room. That is why motion must become sustained civic engagement. The ADA did not become law because the country embraced equality. It became law because people with disabilities organized long enough to make inaction unacceptable.
The third kind of luck is awareness. People with disabilities notice what others overlook. We understand transportation differently when a missed ride means a missed appointment. We understand home care differently when denied hours determine whether someone can leave their bed. Our awareness is expertise, yet institutions dismiss lived experience as anecdotal while elevating spreadsheets above the people living the data every day. Lived experience is data. We identify policy failures before reports are commissioned because we experience their consequences first.
The final kind of luck comes through specialization. Our community holds knowledge no briefing book or listening session can teach. We understand fragmented healthcare because we navigate it. We understand institutional bias because we have spent generations confronting it. That expertise should shape policy, yet we remain underrepresented wherever decisions are made, invited to comment only after priorities have already been set. Consultation without shared authority is not inclusion.
“Nothing about us without us” is not a slogan. It is a governing principle: policies affecting people with disabilities should be informed by those who live with their consequences every day.
No person with a disability should need extraordinary persistence to secure ordinary rights. No one should require the right advocate to obtain home care, the right connection to repair a wheelchair, or the right lawsuit to compel government to meet its obligations. When dignity depends on who notices your struggle, justice has failed.
Building systems that do not depend on luck means specific things. Enforceable timelines for equipment repair and home care authorization, with automatic penalties for delay. Disability-led advisory boards holding budget and design authority, not advisory status alone. Managed care and Health Home contracts that require disability-competent care coordination as a condition of funding. Passage of S1918 and A9205, so New York finally has a specialized Health Home program built for people with physical disabilities instead of retrofitted around us. And people with disabilities at the table before policy is drafted, not after it is finalized and defended.
The disability rights movement has never advanced because we waited for luck. It advanced because people with disabilities transformed lived experience into collective action, collective action into public policy, and public policy into civil rights. That work is far from finished.
Survival should not require luck.
Marcus D. Johnson, CRC-CVE, LMHC, is a disability rights activist, certified rehabilitation counselor, and licensed mental health practitioner with more than two decades of experience. He co-leads the Civics League for Disability Rights.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.