Disabled lives matter: We are not invisible!

To the editor,

Throughout the year, people face circumstances that require attention, understanding, and meaningful action. Yet society’s compassion often appears most visible during the holiday season through initiatives such as Toys for Tots, free holiday meals, and the New York Cares Coat Drive. This raises an important question: why does that same consideration seem far less evident during the rest of the year?

One clear example is that individuals with physical disabilities continually seek the support necessary to maintain their health and well-being. Their goal is to live as independently as possible within their homes and communities. The irony is that attaining an affordable home is an obstacle within itself due to the unrealistic income guidelines. Society and the workforce are still not receptive towards employing people with physical disabilities as the cost of accommodation outweighs the productivity.

Access to appropriate long-term care for people with disabilities remains a significant challenge at both the federal and state levels, particularly considering substantial changes to essential programs such as SNAP and Medicaid. Government decision-making has too often reflected the assumption that reductions in funding for these programs will not affect individuals with physical disabilities. That assumption is misguided. When budget reductions are implemented, people with physical disabilities are often among the first to experience their effects.

Additional examples of how individuals with physical disabilities have been adversely affected by policy decisions at multiple levels of government include the rollback of rights established under Roe v. Wade, particularly the right of women to make decisions regarding their own health care, as well as barriers to access to cancer treatment. In New York State, the Consumer Directed Personal Assistance program was restructured in 2025 under PPL.

For more than 25 years, the Independence Care System Health Home has provided disability-competent care management and essential services that help people maintain their health, well-being, and independence. The organization also provided the support of On A Roll, a nationally recognized wheelchair seating and mobility clinic, as well as Thrive, a social adult day program that offers recreational activities and helps reduce loneliness and isolation. However, support for the Independence Care System Health Home will end because no funding was allocated.

Therefore, why is it that elected officials continuously make decisions based on data and statistics when people with physical disabilities are active participants of society? We vote, pay taxes, raise families independently within our communities in our own homes and contribute to our communities — just as able-bodied individuals do.

Then why are we, people with physical disabilities, consistently ignored, excluded, and left out of the conversation? We constantly state, “Nothing about us; without us.” Every day, people with physical disabilities ask, “What about us?” — a refrain echoed in the lyrics of Pink’s song by the same name and Michael Jackson’s “Earth Song.” When will our healthcare coverage, long-term care, personal assistance, including assistance with Activities of Daily Living as well as critical medical support such as mental health services and Durable Medical Equipment be given the priority they deserve? When will our needs matter? When will our contributions be recognized not as burdens within our communities, but as valuable and essential assets to the fabric of our society?

This pattern of neglect and exclusion is not new. Government entities consistently impede our independence instead of supporting and enhancing it. When funding allocations are discussed why are we always last on the list? Our representatives rarely prioritize our long-term healthcare needs. We are only acknowledged during election cycles when politicians see us as a demographic to court for votes. Unfortunately, after the ballots are cast, concerns of disabled Americans are forgotten until the next campaign season.

People with physical disabilities are individuals who need to be seen, heard and valued. Yet, repeatedly, we are marginalized. Our needs are dismissed as if our existence is an afterthought — out of sight, out of mind. Policies must reflect and protect our humanity. We are demanding that our rights, our health and our futures matter. We are not invisible. We are here to stay! When will our existence as human beings matter? The government’s lack of support for people with disabilities is obvious as per another song, “They Don’t Care About Us” by Michael Jackson. What’s next? — Dismantling the Americans with Disabilities Act, which commemorates its 36th anniversary this year.

IFFAT MAHMUD-KHAN

Member, Civics League for Disability Rights