Liberty and Justice for Some: Disability and America 250

Before our nation was born, my ancestor Major Robert Pike stood before a court in 1692 and spoke against the hysteria of the Salem witch trials at a time when it cost everything to do so. He put his name on the line for Mary Bradbury: a woman wrongfully accused of witchcraft and sentenced to hang. Called “the moral and fearless hero of New England,” he died before the Revolution.

As this nation prepares to celebrate 250 years of the promise it made to its people, I wonder what he would make of me, his descendant: a woman who became disabled in middle age after a near fatal car accident, homebound in rural Massachusetts, still fighting to be counted. Still insisting that dignity is not a privilege.

The Declaration of Independence that followed 84 years after my ancestor’s speech promised to codify what he had already lived: that every person deserves dignity, fairness, and a voice. The Americans with Disabilities Act, signed in 1990, was supposed to bring that promise closer to reality.

It was only a beginning, not an end.

Disabled people still face staggering barriers to employment, housing, healthcare, and full participation in civic life. America is still working out who its promise actually includes. As we mark our first 250 years, there is no better time to name exactly what that broken promise looks like for disabled Americans living it every day.

It looks like being told by a care coordinator that they will not help you as much because you already know how to advocate for yourself. It looks like living in a rural area, but solutions only exist for people in or near the city. It looks like filing appeal after appeal just to access care you were already promised: medically necessary services, treatments, and durable medical equipment. It is a deaf person navigating a healthcare system with no interpreter. It is a wheelchair user stranded at home when it snows because accessible transportation never shows up. It is someone on a ventilator whose managed care plan denies them at every turn, whose life depends on daily emergency room visits just to survive.

And it is showing up to advocate from your bed at home or a hospital bed on your best and worst days, because the alternative is to let decisions that shape your life be made entirely by people who have never lived the reality of being disabled.

Not Denying Care, Only Denying Payment

These are not isolated failures. They are the predictable outcomes of a system that was never fully designed to include disabled people. The law exists. The system finds ways around it.

In 1996, a physician named Linda Peeno sat before Congress and confessed that as a medical reviewer for insurance provider Humana, she had denied a man a heart operation that saved the company half a million dollars—and cost him his life. When she pushed back against Humana, she was told she had not denied care. She had only denied payment. As if those are different things.

The system is designed to make silence the safer choice.

In her testimony, Peeno described a healthcare system in which medical reviewers were pressured to prioritize cost over patient need, in which the denial of care was not an aberration but a business model, and the people making life-and-death decisions were rewarded for saying no.

Then, she said the most damning thing of all: no one had held her accountable. In the eyes of the healthcare system, she had done exactly what she was supposed to do. She had saved the company money.

For speaking that truth, she was threatened. Anonymous calls warned her that harm would come to her and her family. She was surveilled and pressured to stop. She kept speaking out anyway.

She expected the country to be shocked into action after her testimony—but little changed. Nearly thirty years later, the country is still producing the same outcomes for the most vulnerable people in it.

Health insurance companies are not health companies. They are financial companies that manage risk.

The decision to deny a heart operation still haunts her. Decades later, she carries it still, because she has a conscience, and a conscience does not forget. I think often about how many people inside these systems see the same things she saw and stay silent because the cost of speaking is too high. I do not blame them. The system is designed to make silence the safer choice.

We need more Linda Peenos. People with a conscience, on the inside, willing to say: this is causing harm, and I refuse to be complicit in it.

Losing Freedoms

Linda Peeno had it right: health insurance companies are not health companies. They are financial companies that manage risk. I found an example of this in my experience with One Care.

One Care was a demonstration model that combined MassHealth and Medicare benefits into a single plan with one card and one care team for dually eligible individuals aged 21 to 64. Piloted in Massachusetts and several other states, it integrated Medicare and Medicaid for people who qualify for both programs simultaneously and often fall through the cracks between them.

It delivered real results: housekeeping services, laundry, home delivered meals, transportation including non-medical rides, assistance with activities of daily living, and more. Person-centered care meant that a member’s own goals, voice, and needs drove their care plan.

For a medically complex individual, whether homebound as I am or facing other significant barriers, services like laundry assistance and meals are not luxuries. They are, in the truest sense of the word, liberty. The freedom to live on your own terms, in your own home, with the support you need, and to participate in your community.

I had all these services during the One Care demonstration model. Then, in January 2026, I lost them. All of them.

I did not lose them gradually, and I did not have transition planning or any alternatives in place. In abruptly ending the program, MassHealth (Massachusetts Medicaid) gave the health plans very little guidance on how to manage the transition, and members like me were left scrambling.

A One Care member and disability advocate testified before the United States Senate that losing such home support services was not a matter of inconvenience. It was a matter of survival. These services were the difference between staying in one’s home and institutionalization.

Losing those services means the slow erosion of the independence and community connection that every person deserves. It means being pushed toward institutionalization not because your needs have changed, but because the system stopped meeting them. For someone who is homebound, it also means isolation.

Only the Appearance of Accountability

One Care still exists, but it is a skeleton of what it once was. Even before these losses took place, I had been working with health law advocates to navigate a system that is confusing and too often fails the people it was meant to serve.

When denials stand, when violations go unanswered, and when every step forward leads nowhere, what remains is not accountability.

These advocates are fully qualified attorneys doing pro bono work, and their role is essential but limited: they can document violations, navigate appeals, and advocate when insurers and providers fall short, but they will not file a lawsuit, even if the law is being broken and harm is being done.

There was no accountability when MassHealth ended the demonstration model of One Care. And there was no accountability when a provider unlawfully broke contract in retaliation for a grievance I filed, as there was no accountability when every Visiting Nurse Association my doctor referred me to, with orders for physical therapy, refused to honor the Medicare Jimmo settlement agreement, despite the fact that ongoing physical therapy is medically necessary to prevent documented, continued decline.

Recently, I went through a Level 2 appeal simultaneously with Medicare and MassHealth for medically necessary equipment I cannot access any other way as a homebound person. Neither was overturned in my favor. My advocate took it one level further with Medicare, but not with MassHealth. The process is that tedious, and that difficult.

Without consequences, there is no real accountability. Without accountability, there is no change. The appeals process exists. The laws exist. The advocates exist. But when denials stand, when violations go unanswered, and when every step forward leads nowhere, what remains is not accountability. It is only the appearance of it.

Democracy Lives Not in Formal Systems

When I lost the demonstration services of One Care, the cascade was swift and total. Even during the demonstration model, I had experienced long stretches without services due to the lack of providers in my rural area. When the demonstration ended, my One Care partner worked hard to find alternatives. But in a remote area with almost no providers, those efforts could only go so far.

I lost my homemaker who had done my laundry and helped me prepare meals beyond what was delivered. I lost those medically tailored, home delivered meals, specifically designed for my needs. I also lost my laundry pickup service, which would come to my home, take my laundry, and return it the next day.

With no alternatives, I reached out to the organization St. Vincent de Paul. They bought me a washer and dryer so I could finally do my laundry at home.

Sometimes democracy lives not in formal systems or health law offices where strongly worded letters produce no legal consequences and no real policy changes. It lives in organizations and nonprofits that see a person in need, gather their board, take a vote, and simply act.

Organizations like Justice in Aging have been doing this work since 1972, using the power of law to fight for low-income seniors and disabled people navigating the impossible intersection of Medicare and Medicaid.

Organizations like the Disability Policy Consortium of Massachusetts, a statewide advocacy organization fighting for the civil rights of people with disabilities, are working to change that. NPQ is doing the same through its #WeTheCivic project, reclaiming this anniversary as a moment of honest reckoning. This is the work. And it is long overdue.

But the fight runs deeper than any single organization or any single generation. It runs all the way back through 250 years of Americans who showed up for the promise this country made, whether or not the country showed up for them.

My lineage runs through the founding of this nation. On my maternal side, Ebenezer Burgess and Josiah Whitney answered the call of the Revolution. Major Pike has his place in the historical record. But Burgess and Whitney, like so many, were written out of it.

That erasure did not end with the Revolution. Disabled Americans have been written out of this country’s story in the same way, generation after generation.

Pike spoke up when it was hard, long before this nation had a name. Burgess and Whitney were ordinary people who showed up for something larger than themselves because they believed it mattered. I intend to do the same.

I am still showing up, still filing written testimony, still advocating for One Care members, still fighting for the full promise of what accessible, dignified care could look like for every disabled person in this country. The promise this nation made 250 years ago has not yet been kept. But we are still here. And we are still asking.