Exactly 54 years after journalist Geraldo Rivera published his groundbreaking investigation into Willowbrook State School, disability advocates are speaking out that their rights are under threat.
In 1972, Rivera's report brought to light the concerns doctors, parents and residents had with the institution's overcrowding, abuse and neglect. Ultimately, activism led to Willowbrook's closure in 1978 and more people with disabilities having the supports they need to live independently in the community.
However, activists are now worried the country is heading back in time, and calling out policy decisions that put their rights in jeopardy. A year into the Trump administration, many organizations are voicing their concerns with policies and rhetoric from the government.
This week on the Disabilities Beat, we share a recent report that came out on national disability policy, how several organizations are speaking out, and what disabled people can do in light of concerning changes.
TRANSCRIPT:
Emyle Watkins: Hi, I'm Emyle Watkins, and this is the Disabilities Beat.
Geraldo Rivera: The doctor had warned me that it would be bad. It was horrible.
Emyle Watkins: This month marks 54 years since Geraldo Rivera published his groundbreaking 1972 investigation into the Willowbrook State School on Staten Island. Brought in by whistleblowing doctors, he describes seeing one attendant per 50 disabled children
Geraldo Rivera: ...lying on the floor naked and smeared with their own feces.
Emyle Watkins: Geraldo's report is often cited as bringing to light the grave mistreatment of people with disabilities in institutions including Willowbrook, which was the largest institution in the world for people with developmental disabilities when it opened in 1948.
People who lived in Willowbrook faced overcrowded and dehumanizing conditions, a lack of education, forced experimentation, abuse and neglect. Through advocacy, Willowbrook ultimately closed in 1987.
People with disabilities began receiving more support to live in their communities. But now, 54 years later, disability advocates are again speaking out against policies and practices that harm them, worried that the United States is heading back in time.
Dom Kelly: We understood that, like this, first year of the Trump administration would be really an opportunity to fast track a lot of what we saw, what we figured would be a dismantling of many of the rights that our community has fought so hard for.
Emyle Watkins: Dom Kelly is the founder, president and CEO of New Disabled South, a disabled-led organization that released a report this week titled "Project Eugenics, The Rollback of Disability Rights." Kelly's team has been tracking policy promises and changes made by key members of the Trump administration and the President that could threaten disability rights.
Dom Kelly: It has appeared to be an intentional, deliberate, strategy to roll back disability rights, to undermine the the lived experience of disabled people, and to push an agenda that it just has harmed and will continue to harm disabled people, chronically ill people.
Emyle Watkins: New Disabled South names three overarching strategies that they see being used in policy: dismantling, punishment and dehumanization.
Kelly's organization is not the only one voicing concerns a year into the Trump administration. This week, the American Public Health Association joined two other organizations and lawmakers in voicing significant concerns with [U.S.] Health and Human Services Secretary Robert F. Kennedy, Jr. Here's Dr. Georges Benjamin, the executive director of APHA.
Dr. Georges Benjamin: Mr. Kennedy's tenure can best be described as chaotic, broken promises, administrative incompetence, professional neglect, which is a strong term when you think of him as an attorney, public health malpractice, bad science, disinformation, exclusion of expert advice...
Emyle Watkins: Last week, the think-tank New America also held a webinar on policies concerning to disabled lives. Tory Cross from Caring Across Generations, said during the webinar...
Tory Cross: This administration and too many in Congress see spending on the policies and programs that support our lives, our independence, our autonomy, as waste. The largest example in the last year is the passage of HR1, also known as the One Big Beautiful Bill Act, which gutted more than a trillion dollars from Medicaid, Medicare and the Affordable Care Act.
Emyle Watkins: But advocates aren't just calling out one person, one party or one level of government. As Kelly points out, their report is indicative of larger societal concerns.
Dom Kelly: This is beyond party. This is ableism that is so deeply a part of our our society. It's a part of our policy making. It's in everything.
Emyle Watkins: New Disabled South's report makes clear its goal: "to name what is happening." Kelly says information like this allows people to identify trends in their government. But seeing so many organizations call out so many different policy concerns and issues can feel overwhelming. Kelly says if people are seeing these trends and are concerned, the place to start is by building community.
Dom Kelly: And I think that this community aspect is just like, so vital in this moment, the principle of interdependence is like, that is how we survive, and that is how we win, ultimately. And winning, I think, means like how do we liberate our people? And it's like we need to find each other and we need to help each other.
Emyle Watkins: You can listen to the Disabilities Beat segment on demand, view a transcript and plain language description for every episode on our website at btpm.org, I'm Emyle Watkins, thanks for listening.
