A few months ago, someone in my own family asked, gently, whether I really wanted to go out in the woods behind the house alone, something might happen to me. I said I was careful, that everything on me still works, and asked her directly: Why can’t I take that risk? It’s mine to take. Around the same time, my granddaughter, who lives in the apartment we built over the garage, got a version of the same question turned back on her, when she pushed back about us worrying over when she comes and goes at night. We don’t get to have her check in with us, the same applies to her.
Two moments, one question underneath both: Who decides what’s the matter here, and what to do about it. I’ve spent close to 50 years in healthcare administration, 25 as a national accreditation surveyor, and 10 years with an advocacy network, Dignity Alliance. I’ve watched that question get asked of two populations, treated as though they have nothing to do with each other. One is older people. The other is disabled people. They are, to an enormous degree, the same people, arriving at the same needs on different schedules. Nearly 70% of Americans turning 65 today will need some form of long-term services and supports before they die. Functional limitation isn’t a subplot in the aging story. For most of us, it’s where the story ends up.
And yet we run two conversations, two advocacy movements, two funding streams and, plainly, two different tests for whether a person is being treated with dignity, depending on which category they’ve been sorted into. That split survives because it’s convenient, the same way it’s convenient to treat a nursing home resident as a line item rather than a person with a preference. So, I want to lay out the test for those aging, one built mostly without our noticing we were building it, and the one that the disability rights movement handed us with its grammar for a generation before we caught up.
“Nothing About Us Without Us” entered the disability advocacy lexicon in the 1980s and became a defining organizing principle through the 1990s.
Disability Language Developed First
I didn’t start in aging. I came to this work from a disability background, and aging became my expertise later. That means the framework underneath everything I do wasn’t invented for older people. “Nothing About Us Without Us” entered the disability advocacy lexicon in the 1980s and became a defining organizing principle through the 1990s: the insistence that people with disabilities represent their own interests rather than have others represent those interests for them. That’s not a slogan. It’s a test, asking if the people a policy is about were in the room when it was made.
When my colleagues and I started talking about why “age-friendly” language had always sat wrong with us, we arrived without meaning to that same test, re-derived from the aging side. Age-friendly design gives you curb cuts, better lighting, larger print on signage: real, and not nothing, but the accommodation of amenity, things done for older people by people never needed to ask them first. Age justice, the term we settled on instead, asks the disability movement’s question of our own population: not “is this pleasant?” but did older people have the power to shape it? Most of the time, the honest answer is we don’t know, because no one asked.
Four Main Questions
At its core, the test asks four questions. Is there genuine choice—not merely a menu of options designed by others, but real authority over one’s living situation, care routine, and acceptable level of risk? Are resources such as housing, home care, paid support, and transportation funded in proportion to actual need rather than political convenience? Are the people affected visible in the community, or have they been placed in a separate category where others need not see them? And do they have power—not influence that can be withdrawn, but an actual seat, vote, or veto over decisions made in their name? A policy, building, or family arrangement that can answer yes to all four respects the person at its center. One that fails even one question does not, however good its intentions.
I’ve watched this test fail at industrial scale. Private-equity-owned nursing homes are the clearest case I know residents don’t choose their care, aren’t given the staffing budgeted for them before ownership changed hands, are functionally invisible outside the building, and have no power over decisions made by owners collecting related-party fees from facilities reporting losses on paper. It’s no coincidence that a landmark study found mortality rose roughly 10% at those facilities after acquisition, even as interest and lease payments climbed. That’s a zero-out-of-four, scaled to an industry.
An aging-rights infrastructure that doesn’t fully inherit the disability-rights movement’s tools is building for a version of old age that mostly doesn’t happen.
I’ve watched it fail at kitchen-table scale too, more gently: a family understanding, repeated often enough that everyone knows the terms, that whoever ends up with the house also takes on responsibility for a relative who can’t fully advocate for himself or herself. It passes visibility, nobody is hidden away but fails resources, since a spoken agreement isn’t legally binding once the house changes hands, and “we’ll work it out” becomes the only affordable sentence, right up until it doesn’t hold. And I’ve watched it pass at the smallest scale there is, in my own house: my granddaughter’s apartment is hers, and I still snowshoe in my own yard, because that’s a risk I get to weigh and no one else does. Neither of those is a policy. Both are the same test.
A Single Test
The reason it must be one test, not two, is structural, not sentimental. Compound bias, the way functional limitations pile onto whatever bias a person already carries as they age means nearly everyone who lives long enough eventually becomes, in every way that matters here, disabled. An aging-rights infrastructure that doesn’t fully inherit the disability-rights movement’s tools is building for a version of old age that mostly doesn’t happen. Justice in Aging’s recent framework makes the same connection explicitly, treating home-and-community-based services, universal design, and Medicaid access as shared infrastructure for people with disabilities of all ages, not two separate lanes. That’s the right instinct. It just needs to be the default one.
I was asked directly, not long ago, whether a test like this could be used inside a workplace and run against a benefits policy or an accommodation request before it takes effect, rather than after someone files a complaint. The honest answer is yes, and it takes the same four questions: who chose this, what resources reach the person it’s about; will they still be visible once it’s implemented, and did they have real power over the decision, not just a comment period. It costs nothing to ask. It’s only expensive to answer honestly, which is exactly why most institutions don’t.
James A. Lomastro, PhD, is a healthcare policy analyst, national CARF surveyor, and pro bono advocate with Dignity Alliance Massachusetts. He writes on nursing home reform, AI governance, and elder justice.
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