Disability Justice and Elder Activism: Two Sides of the Same Coin
The ADA turns 36 this week. What I reported in 2022 about ageism and ableism — and what has moved since, in both directions.
This Sunday, the Americans with Disabilities Act turns 36. It is not being celebrated so much as defended. I was born five years after it passed. Although I have never lived a day without the law’s protections, I’ve lately had to wonder how many of them will outlast the anniversary.
I reported this piece for Next Avenue in 2022 on the collision of ageism and ableism — the two prejudices I wrote about in my first Substack post last week as they personally relate to me. For this week, I share how I examined the topic from the outside. Next Avenue lost its federal funding and was absorbed into its parent station this spring; it no longer publishes as it did. I’m republishing the piece here, updated, because its argument has only gotten truer and more relevant.
Maggie Buckley is a health and patient advocate in Northern California who lives with Hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue disorder that affects all systems of the body. It comes with co-morbidities like fragile skin, bleeding issues, and chronic pain. She was 60 when we spoke.
There is no standard test for hEDS. Diagnosis is usually made through examination of symptoms and family history, since the condition is hereditary. Because diagnosis involves subjective judgment, hEDS is a difficult condition to have; many doctors fail to recognize it.
Buckley reflects on how the Rehabilitation Act of 1973 — passed about ten years after she was born — prohibited discrimination against people with disabilities by federal agencies, contractors, and programs receiving federal dollars. It also set the stage for the Americans with Disabilities Act.
“Before 1973, people with disabilities didn’t have many rights. They were hidden away and weren’t fully involved in society,” she says.
After the passage of the ADA in 1990, Buckley says, inclusion became more of a reality. The ADA bans discrimination and guarantees that people with disabilities can access equal employment opportunities, goods and services via public accommodations, and state and local government programs.
But even with the ADA and its 2008 amendments, Buckley says more needs to be done to ensure equity and inclusion for people with disabilities — especially those aging with them.
“In our country, we tend to hide old people away in nursing homes. Hopefully, we now know that whether someone is aging or disabled, we should still give them the best life,” says Buckley.
How Ageism and Ableism Collide
Buckley and many other disability advocates affirm the worth of living with a disability, even in old age. She implores us to treat aging people with the same regard we extend to younger people.
Not everyone sees it this way.
One person who unapologetically calls for a systematic difference in treatment based on age is Ezekiel Emanuel, an ethicist at the University of Pennsylvania. He argues that it is reasonable to wish to die at 75, to be spared the burdens of old age.
In a 2014 Atlantic article, he wrote: “Living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, [and] the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.”
Emanuel’s views are challenged by Georgetown University-affiliated disability rights scholars Joel Michael Reynolds and Anna Landre, who argue that his view is factually mistaken. People can and do live fulfilling lives after 75, even with disabilities.
In their 2021 paper on disability and aging, they write: “Everyone, if they live long enough, will experience disability... If you desire a long life, you desire a life that will experience impairment and disability. This is the human condition. Disability is an integral and essential part of what it means to be human.”
The late bioethicist Daniel Callahan made a more careful version of the same argument — that health spending on the old shortchanges the young. In 2009, at 79, he accepted $80,000 in medical interventions for a heart condition, and laughed off the contradiction when asked.
Of Emanuel and Callahan, Reynolds and Landre concluded: “In painting disability and aging as inherently and profoundly limiting to one’s autonomy and possibilities, in treating disability as abnormal, unhealthy, and unexpected, Emanuel and Callahan reinforce harmful societal stereotypes about both what it means to be older and also what it means to be disabled.”
The COVID-19 pandemic showed how such stereotypes play out in dangerous ways. Older adults, particularly those in long-term care, experienced prolonged isolation due to lockdowns and the premature death of loved ones.
The law on the books is one thing. Who gets studied, treated, and taken seriously is another.
A Need for More Age-Friendly Research
Dr. Kathleen Friel, who served as the lab director of the Burke Neurological Institute from 2018 to 2024, researches the importance of motor activity in neurorehabilitation for cerebral palsy. Existing CP research focuses primarily on children and adolescents, so Friel makes a conscious effort to focus hers on adults. In 2021, the Cerebral Palsy Foundation awarded her its National CP Awareness Research Award; her work has included developing an interlimb-coordinated humanoid robot to mitigate abnormal spasticity and synergistic movement patterns, an approach that has shown promise in treating abnormal gait after hemiparetic stroke.
It’s not uncommon for research to focus mostly on the young — the same pattern shows up in autism research. But children with developmental disabilities become adults with developmental disabilities, and adults who age become adults with acquired ones. Both groups need providers who understand complex conditions, and those providers are disappearing.
Between 2000 and 2022, the number of Americans over 65 grew by 60 percent while the number of board-certified geriatricians fell by 28 percent — to roughly 7,000, about one for every 10,000 older adults. More than 60 percent of U.S. counties have no geriatric specialist at all.
Dr. Carla Perissinotto, a geriatrician and professor of medicine at UCSF, told Next Avenue in 2021 that she had received more training in pediatrics than in geriatrics. “Yet in any field that you practice, except pediatrics, you’re likely to have older adults be a large percentage of the population that you serve,” she said.
Which means finding your voice — as the patient or the caregiver — is critical.
The Power of Self-Advocacy
As an adult aging with cerebral palsy herself, Friel’s research intertwines with disability justice activism.
She thinks the difference between ableism and ageism may come down to a difference in activism: younger disabled people have grown up with their disability and identify with it, so they’re more likely to engage in political action than older adults who have only recently become disabled.
Activism is critical to ensuring equity in health care — and Friel places responsibility on how the ADA is enforced.
“With other laws, you just call the police,” she says. “But for us, with our law, it’s on us to make sure that it’s enforced. And that is a huge burden on us. If someone is older and they’re pretty sick, they probably don’t have the energy to file a lawsuit against a movie theater.”
The workplace tells the same story about enforcement. When internal IBM emails surfaced in 2022 showing executives calling older employees “dinobabies” to be made “an extinct species,” the company settled within a month of the emails becoming public — and related age-discrimination suits kept coming for years afterward.
Alan Gutterman, a lawyer and founder of the Older Persons’ Rights Project, sees the movements as related. “There is much that they can learn from each other,” he told me.
Gutterman started his organization after noticing a disconnect among his aging colleagues. Even among peers who were themselves older, few were interested in a human rights approach to advocacy. They focused instead on what he calls the “day-to-day” legal protections: estate planning, guardianship, Social Security.
He speculated the reason could be denial — and the fact that his colleagues came from higher socioeconomic backgrounds, “therefore, [they] aren’t experiencing some of the things that others might be.” Lower-income individuals are at higher risk of developing physical disabilities; wealth buys distance from the problem, and distance buys disinterest.
What Changed
When I interviewed Gutterman in 2022, he pointed to a vacuum. “The United Nations has conventions about children, disabled persons, gender and racial discrimination,” he said. “However, it does not have a convention regarding the human rights of older persons.”
There was some advocacy on how to age well, he noted, but much of it was commercial. That was the state of things when this piece first ran.
Half of it has changed. In April 2025, the UN Human Rights Council adopted a resolution establishing a working group to draft a legally binding convention on the human rights of older persons. That group met in Geneva this month — its first substantive drafting session ran July 13 to 17 — to begin negotiating what the convention will say. We’re one step closer to protecting the rights and dignity of the aging population. Finally.
The other half has changed in the opposite direction. The ADA turns 36 this week in the middle of the most serious effort to narrow it since its passage. A Justice Department legal opinion issued in June challenges the right of disabled people to receive services in their communities rather than institutions. This Olmstead principle has anchored the law for 25 years. Enforcement guidance in place for more than a decade is being withdrawn.
The first digital accessibility rule for government services, due to take effect this spring, has been delayed to 2027 and opened for revision. And the Medicaid dollars that make community living possible are being cut by more than $900 billion, with the reductions arriving at the end of this year. Friel told me in 2022 that with this law, enforcement falls on us. She was describing a burden. But today, it’s also a job description.
Gutterman told me in 2022 to fight the good fight, that movements ebb and flow. He was righter than he knew, in both directions at once. The convention his vacuum called for is finally being drafted; the law my life has depended on is being narrowed — everyone who lives long enough crosses from one constituency into the other. Which version of the fight is waiting when we arrive is being decided now.
A version of this article was originally published by Next Avenue on November 1, 2022, as part of The Future of Elder Care, an initiative supported by The John A. Hartford Foundation. It has been updated.