Back in the 1980s when I was a budding journalist publishing articles related to women and health while working as Program Director for the National Women’s Health Network, I had the privilege of interviewing Judy Heumann and her collaborator Ed Roberts. Judy was known by then as the Mother of the Disability Movement and Ed was called the Father of Independent Living.
Judy, who died in 2023, had contracted polio as a child who then spent the rest of her life in a wheelchair. She was denied the right to attend school because she was considered a fire hazard at the age of five. That was the seed that led to her life’s work. Determined to work with other disabled people, she helped found the Berkeley Center for Independent Living and the World Institute on Disability with Ed, who also had polio at the age of fourteen. It left him completely paralyzed and on a respirator for the rest of his life. Undeterred, Ed fought to attend UC Berkeley, and ultimately became the first student to use a wheelchair there, let alone a respirator.
Their stories opened my mind to justice issues as no one else had. Together Judy and Ed changed the lives of all disabled people by helping to institute laws like the Americans With Disabilities Act (ADA), and much more. They weren’t afraid of shocking people, and they knew how to mobilize the media. In 1990 they led a demonstration in which thousands of activists abandoned their wheelchairs and mobility aids, many of them crawling up the eighty-three steps of the U.S. Capital building. The youngest one among them was eight years old.
A recent article in The Guardian noted that the day after Donald Trump was sworn for a second term was the day that the accessibility page and all assisted living content was removed from the White House website. Live interpretation (ASL) was removed from the White House and various federal agencies too.
Additionally, words like “diversity,” “women,” “accessibility” and “disability” were listed as reason to reject grant applications at the National Science Foundation, scaring other agencies and research institutions. That was followed by the order to dismantle the Department of Education, with over 1300 employees fired, and seven regional offices were closed. Special education and rehabilitation services along with the department’s office of civil rights were affected – after Linda McMahon, Trump’s Secretary of Education, promised that those programs would not be affected.
As the Guardian pointed out, early intervention programs and post-high school transition programs, including those that help with employment for disabled workers, are being slashed. They even went so far as to scrub the Special Olympics. Services like speech, physical and occupational therapy have been cut. So were funds for ramps and braille materials, along with the idea of preferential seating and more. Some have called the treatment of disabled people “the canary in the coal mine.” After all, Hitler started his elimination campaigns with disabled people.
What’s happening here now smacks of Eugenics, which was first passed in the U.S. in 1907 in Indiana. Eugenics laws targeted disabled people in schools, institutions, and jails. Sterilization was mandated for “criminals, idiots, rapists, and imbeciles” in the state. Another law passed that year called for compulsory sterilization for those with “heredity diseases, which included deafness, blindness, epilepsy, and a lot of other conditions. In 1930s Germany mandatory abortions were also required if a parent had one of the identified conditions.
In the U.S. it remains legal in at least 31 states and Washington, D.C. to forcibly sterilize people because of a 1927 SCOTUS decision that upheld sterilization in Virginia. That decision has never been overturned.
This is the stuff of nightmares, and horror stories. It’s a shameful piece of American history, and a frightening example of what can happen when dictators and oligarchs take over a country and massacre their laws, ignore their courts, and extort institutions of learning, law, and civil rights. It’s beyond Draconian and Dystopian. It’s just plain evil.
Alongside these travesties it bears illuminating what is happening at the same time in the health sector. An April post on Bluesky by someone named Josh Marshall made the case that “most of the country has little idea of what has happened at NIH or through it the entire ecosystem of biomedical research in the U.S.” Marshall reminds us that cancer research has been put back decades along with other research about treatments and cures for other illnesses that lead to disability or death.
“It’s real, and it’s happened so quickly that most of the country doesn’t know it yet [including] the biomedical research world outside of NIH. … The prospect of more lifesaving cures and treatments [is] bleak,” Marshall says. So is life for disabled or otherwise comprised Americans, including children, elders, and those with chronic illnesses or disease, all because of political extremism led by totally incompetent people with no relevant experience or an ounce of empathy.
The canaries in the coal mines are sounding alarms. We must stay alert and actively resist in whatever ways we can. Our lives and our loved ones depend on us. As Dylan Thomas famously said, “Do not go gently into the night. Rage, rage against the dying of the light.”
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Elayne Clift writes from Brattleboro, Vt.