The world lost a leader last month. Outside her home community of New York City, the loss of her flame was hardly noticed. Yet she and disability advocates across the nation have had and continue to have impacts far beyond their recognition.
On March 28, 2021, The New York Times reported the tragic death of Edith Prentiss at the age of 69. Prentiss began using a wheelchair in her late 40s because of worsening medical conditions. A social worker who spent her career facilitating equity for others suddenly found herself advocating to remove barriers she was personally encountering.
Described in many obituaries as “fierce,” Prentiss held her community accountable for ensuring people with disabilities were afforded equal access. She was part of a class action lawsuit against the New York City Taxi and Limousine Commission to add sufficient accessible vehicles to their fleet. She was an advocate for accessible housing.
She held protests in the streets. She yelled at government officials. She never backed down. She got stuff done.
I imagine Prentiss is just one of the many unrelenting disability activists of whom you have never heard. Yet our country would not be the same without them.
People with disabilities often encounter expectations that they will ask nicely for what they need. They are supposed to wait for changes to be made. They are supposed to understand that expensive changes cannot be made for just a handful of people.
But we’re not talking about a handful of people. We’re talking about 1 in 4 Americans. Any one of us is just an accident or illness away from being disabled. And then will you be ready to patiently wait for things like housing, transportation, jobs and health care?
Waiting patiently has never changed anything, and disabilities activists know that. The disability rights movement was part of the larger civil rights movements of the 1960s and resulted in monumental policy and law changes starting in the 1970s.
Right here in Colorado, the Atlantis Community organized a protest for access to city buses that effectively shut down the Denver public transportation system in 1978. The passage of the Americans with Disabilities Act in 1990 was solely because of political pressure and protests. In 2017, it was people with disabilities’ effective use of sit-ins and protests that prevented catastrophic changes to Medicaid that would have put many Americans without access to health care or essential supports.
Prentiss exemplified the characteristics of the formidable activists who came before her – outspoken, persistent, unapologetic and unfailingly kind to the people who reached out to her for help. As long as we still create barriers to people with disabilities in our communities, we still need people just like her.
Before the pandemic hit and Prentiss’ health declined, filmmaker Arlene Schulman was in the middle of producing a documentary about Prentiss titled “Hell on Wheels.” Though she says the scope will change with Prentiss’ death, Schulman intends to move ahead with the project. We’ll be watching for updates. It’s a story that needs to be told.
Tara Kiene is president/CEO of Community Connections Inc.