The ADA was signed into law in 1990 with a promise that people with disabilities would no longer be excluded from full participation in American life. It recognized disability discrimination as a civil rights issue and established a framework for removing barriers across employment, transportation, education, healthcare, and public services.
Thirty-six years later, the law remains one of the most significant civil rights achievements in American history. Yet the distance between the ADA’s promise and the daily experiences of many people with disabilities remains strikingly large.
The greatest threat facing disability rights today is not the absence of laws. It is the growing willingness of governments and institutions to retreat from the responsibilities those laws created.
Since President Donald Trump returned to office, disability advocates have watched broader efforts aimed at diversity, equity, inclusion, and accessibility become targets for dismantling. Federal agencies have reduced or eliminated initiatives intended to address inequities experienced by marginalized communities. Civil rights enforcement priorities have shifted. Equity frameworks that once acknowledged structural barriers are increasingly portrayed as unnecessary, ideological, or even discriminatory.
While these actions are not directed exclusively at people with disabilities, their impact on our community is undeniable.
People with disabilities rely upon robust civil rights enforcement because accessibility has never been self-executing. Progress has always required oversight, accountability, and a willingness to challenge systems that exclude. When governments weaken those mechanisms, disability rights become more vulnerable to political winds and budget negotiations. The message is subtle but unmistakable: inclusion is treated as expendable when it becomes inconvenient.
New York frequently presents itself as a national leader in disability inclusion. Yet many of the most fundamental rights guaranteed under the ADA remain the subject of ongoing litigation, including access to mass transit, curb ramps, Access-A-Ride fares, and public accommodations. Thirty-six years after the ADA became law, people with disabilities are still forced to go to court to secure access to transportation, education, public safety, and public services. After nearly four decades, these are policy choices rather than implementation failures.
The same pattern is unfolding across long-term care and healthcare systems.
Today, Independence Care System faces closure. For thousands of New Yorkers with physical disabilities, ICS is not simply another healthcare provider. It is a specialized system built on the understanding that disability is not merely a medical diagnosis but a lived experience requiring coordinated supports that enable people to remain healthy and safe at home, and to thrive in their communities. In a healthcare landscape where disability competence remains rare, losing that expertise means losing a safeguard against fragmentation, neglect, and institutionalization.
For people with physical disabilities, independence and health are not achieved through determination alone. Good health and independence require infrastructure. They require home care, accessible transportation, durable medical equipment, disability-competent healthcare providers, and care coordination that understands the realities of living with disability.
Yet despite years of evidence demonstrating the value of disability-competent care coordination, New York appears willing to allow another essential disability infrastructure system to disappear.
The same contradiction emerges in debates surrounding Intro. 303, proposed legislation affecting live-in home care. Supporters have largely framed the proposal as a labor issue. For people with disabilities, it is also a community living issue.
No one disputes that home care workers deserve fair wages and fair treatment. People with disabilities depend upon these workers every day, and many advocates have consistently supported efforts to improve workforce conditions. The challenge is that policymakers have largely treated worker protections and disability rights as competing interests when they do not have to be.
Disability advocates proposed another path. We urged elected officials to pursue solutions that protected workers while preserving access to the home care supports that make independent community living possible. We called for New York State to become an active partner in developing sustainable funding solutions rather than shifting the burden onto people who rely upon these services to remain in their homes.
Yet those alternatives received far less attention than proposals that many people with disabilities believe will reduce access to live-in care without creating realistic replacements. Once again, the disability community identified the likely consequences, offered potential solutions, and found itself fighting to be heard.
That is not a failure of information.
It is a policy choice.
Over time, those policy choices accumulate. What begins as a funding decision can become isolation. What begins as a service reduction can become institutionalization. Public policy ultimately determines whether a person can participate fully in community life.
As a disability justice advocate, I have long argued that limiting choices limits existence.
Every inaccessible subway station limits choices. Every delayed wheelchair repair limits choices. Every reduction in home care options limits choices. Every inaccessible healthcare provider limits choices. Every closure of a disability-specific service narrows the range of possibilities available to people trying to live ordinary lives.
This is why disability advocates continue insisting that lived experience be recognized as expertise. Our experiences are evidence. Our narratives are a form of knowledge that quantitative metrics alone can never fully capture. Yet disability perspectives remain undervalued in many policy discussions. Decisions affecting our lives are still made by individuals who have never relied on personal assistance services, navigated inaccessible transportation systems, waited months for wheelchair repairs, or struggled to find disability-competent healthcare.
We often celebrate having a seat at the table.
But who owns the table?
The disability community has fought for representation for decades. We have advisory councils, task forces, stakeholder groups, commissions, and listening sessions. Representation matters. Visibility matters. Being present in decision-making spaces matters.
Ownership, however, is different.
Ownership means helping determine priorities before decisions are made. Ownership means influencing how resources are allocated. Ownership means defining success, establishing accountability, and shaping the vision that guides public policy. Measuring progress solely by how many disabled people are present in a room misses a more important question: Do people with disabilities possess meaningful authority once they arrive?
For decades, our movement has advanced the principle of “Nothing about us, without us.”
Today, that principle must evolve:
Disability leads.
Governments and institutions must recognize people with disabilities as experts in the policies that shape our lives. The ongoing lawsuits, transportation barriers, healthcare disparities, threats to community living, the fight to save Independence Care System, and the debate surrounding Intro. 303 all point to the same conclusion: people with disabilities have consistently identified both the problems and potential solutions, yet our expertise continues to be treated as advisory rather than authoritative.
That reality brings us back to the question that sits at the heart of disability justice:
Who owns the table?
Representation matters. Visibility matters. Consultation matters. Yet none of them are substitutes for power. Ownership means helping determine priorities before decisions are made. Ownership means influencing how resources are allocated. Ownership means defining success, establishing accountability, and shaping the policies that govern our lives.
For decades, people with disabilities have fought to gain access to rooms where decisions are made. We have earned seats on advisory councils, commissions, task forces, and stakeholder groups. Those victories matter. But the next phase of disability justice requires more than being invited into the room. It requires ensuring that disability perspectives are not treated as optional considerations after decisions have already been made.
Disability justice ultimately requires more than representation.
It requires leadership.
For decades, our movement has advanced the principle of “Nothing about us, without us.” That principle remains as relevant today as it was when it first emerged. But the challenges confronting people with disabilities demand that we push even further.
Nothing without us.
Led with us.
The future of disability justice will not be secured through annual celebrations, symbolic inclusion, or statements of support. It will be secured when people with disabilities are trusted to help shape policy, direct resources, define priorities, and lead the systems that affect our lives.
Because limiting choices limits existence.
Every inaccessible service, every unnecessary barrier, every policy that narrows opportunities diminishes the ability of people with disabilities to live fully in their communities. Conversely, every expansion of choice is an expansion of freedom, dignity, belonging, and possibility.
That was the promise of the ADA thirty-six years ago.
It should still be our expectation today.
Marcus D. Johnson, CRC-CVE, LMHC, is a disability justice activist, certified rehabilitation counselor, and mental health practitioner with more than two decades of experience. He serves as Manager of Advocacy Programs and Initiatives at Independence Care System and co-leads the Civics League for Disability Rights, where he works to advance disability-competent healthcare policy and systemic reform for people with physical disabilities.
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.