This story is based on excerpts of WXXI’s new Move to Include podcast on disability self-advocacy. The series launches on Jan. 12. Find it wherever you get your podcasts.
B.J. Stasio has a simple goal.
Live a full life, free of discrimination.
That goal has been the focus of a grassroots self-advocacy movement led by people with intellectual and developmental disabilities. The movement spans the globe and reaches back generations. But the goal has yet to be realized.
Reality, Stasio said, is something less.
“A lot of people not living the lives that they want,” he said, “and taking what society expects of them, and cheating them out of the best life that they want for themselves, and the right to share your feelings and your love and your emotions with whoever you choose.
“That's what's at stake here.”
For more than 200 years, the accepted practice in the United States was to place people with disabilities in institutions. That was the norm dating back to before the county's founding and continuing into the 1900s. And those facilities were rife with neglect and abuse — including forced sterilization.
During the Civil Rights Movement in the 1960s and ’70s, disabled activists helped shape new legal protections.
Among them: the Americans with Disabilities Act, which became law in 1990. But it wasn’t until 1999, and what’s known as the Olmstead Decision, that the courts said disabled people had the right to choose where to live and deserved realistic accommodation.
Though it is now decades later, local self-advocates say the fight for equal rights and treatment is far from over.
“It's a long history,” Stasio said. “And you can write your own history, and hopefully your history will influence somebody else's.”
Stasio is a peer advocate and mentor at the New York state Office for People with Developmental Disabilities.
His own journey began, he said, when he was about 16 years old, with a phone call to a Buffalo restaurant whose front door was only accessible by stairs.
“I wanted to have dinner with some people I knew. ... When I called the restaurant, I said, ‘I want to eat there. How do I get in the restaurant?’” he recalled asking, and then the response: “‘Oh, you use a wheelchair? You can go in through the kitchen.’”
So, Stasio got a group of people with disabilities from the Buffalo area together to protest the restaurant. The sidewalk was under construction, and Stasio saw an opportunity in the wet cement.
“Of course, I take it to the nth-degree and get myself stuck in the not-dry cement on the sidewalk, and the cement dries around my wheel. So they kind of had to jackhammer my chair out of the sidewalk, which was my intent.”
The message, he said, was this: “If you want people with disabilities to come to your restaurant, you need to make it accessible.”
Accessibility, be it in buildings, transportation or public services, remains an issue. So do other basic needs like health care. There has been a growing push, from Republicans and Democrats, to force treatment on people with mental illness and disabilities, even so far as re-institutionalizing them. And changes in Medicaid regulations and funding are of particular concern moving forward into 2026.
Stasio and other activists say discrimination based on ableism, or the idea that disabled people are less than human or do not have the same capacity for personhood as others, is baked into the way public spaces and public policies are formed.
“A lot of people with disabilities can live beautiful, integrated lives in the community,” said Stephanie Woodward, a self-advocate like Stasio, “but they need help getting in and out of bed in the morning, perhaps help taking a shower.”
Woodward is a disability rights attorney and co-founder of the Disability EmpowHer Network.
“Medicaid will cover attendant care services. Most private insurances will not,” she said. “So this is causing this cycle of poverty, that we have to stay poor enough so that Medicaid will cover our attendant care, because if we get too much money, we lose (it), and then we lose our ability to make money."
According to The National Disability Institute, the poverty rate for people with disabilities is more than twice that for people who do not have disabilities.
And about 60% of people with disabilities are not employed.
Misperceptions of disabled people are part of the problem, Woodward said.
“You have a current administration that has (Health Secretary Robert F. Kennedy) saying like people with autism will never be in real relationships, they'll never have jobs, they'll never live fulfilling lives,” she said, “which is the exact opposite of what is true.”
She continued: “We have been working for decades to take away those stigmas and demystify these ideas around disability.”
The best people to know what people with disabilities need to thrive, she said, are people with disabilities.
“In the disability community, we have a mantra," Woodward said. "It's ‘nothing about us without us,’ which means: Decisions should not be being made about us without us in the room.”
And yet, she continued: “We live in a world where so many people want to talk for disabled people and not listen to disabled people. The amount of people who think that they know what is best for someone else is astounding, but the amount of people who want to sit down and listen to what a person thinks is best for themselves is minimal.”
Which brings it back to that simple goal.
“People with disabilities need to realize that they have value,” Stasio said. “You have value. You belong in the communities in which you live, instead of being sheltered away and not doing the thing you need to do to have the life you want. Because it's your life. You're the only one who's going to live it and make the best of it.”
This story comes from WXXI's Inclusion Desk, focusing on disabilities and inclusion.
