Nothing about us, without us -- what about us?
To the editor:
We are keenly aware of the importance of being a voice when it comes to independence and access to services provided for people with disabilities on both the state and city levels of government. Then why are we, people with physical disabilities, consistently ignored, excluded and left out of the conversation? We continuously state, “Nothing about us; without us.” We work, live in and actively contribute to our communities—just as able-bodied individuals do. We pay taxes, raise families and engage in civic life. We are voters, too. Our disabilities do not hinder our ability to cast our ballots and our voices matter just as much as anyone else. Yet, time and again, we are marginalized. Our needs are dismissed as if our existence is an afterthought—out of sight, out of mind.
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 (ADLs) as well as critical medical supports—such as mental health services and Durable Medical Equipment (DME)— 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?
Why are we subjected to unnecessary limitations by the very government that is supposed to protect and empower us? When will policymakers recognize that we are not invisible? For example, the State of New York’s decision to overhaul the Consumer Directed Personal Assistance (CDPA) program by handing over control to Public Partnerships LLC, a Georgia-based firm, as the sole fiscal intermediary for the entire state. Who decided that this was the right move for people with disabilities who rely on consumer direction? Why was this decision made unilaterally and without meaningful input from the disability community? Why is New York State outsourcing such a crucial program rather than reinvesting in state and city-based organizations that understand the needs of disabled New Yorkers firsthand?
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, the concerns of disabled Americans are forgotten until the next campaign season.
Humanity is lost on the disability community. Too often, we are not even seen as people. Instead, we are reduced to numbers, statistics and budgetary figures—perceived as too expensive to support rather than as integral, contributing members of society. The fight for healthcare coverage, personal assistance and basic human dignity is a battle we are forced to wage continuously. Despite our tireless advocacy, our presence at hearings and meetings are cursory and often feels performative. Lawmakers pretend to listen, but decisions have already been made behind closed doors.
The physically disabled community is not asking for special treatment. We are demanding equal considerations and protections under the law. We are individuals who need to be seen, heard and valued. 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 and will no longer be ignored. When will our existence as human beings matter?
Marcus Johnson and Iffat Mahmud-Khan
Disability Activists, Consumer Direction Members
Keywords
People with disabilities, Durable Medical Equipment, Activities of Daily Living, assisted living, healthcare
