Overlooked is a series of obituaries about remarkable people whose deaths, beginning in 1851, went unreported in The Times. This latest installment is part of a series exploring how the Americans With Disabilities Act has shaped modern life for disabled people. Share your stories or email us at ada@nytimes.com.
In 1958, when Roland Johnson was 12, his parents sent him to the Pennhurst State School and Hospital outside Philadelphia. There he would spend 13 tormented years living through the nightmare of institutionalization that was commonplace in mid-20th-century America.
Terrified and confused, Roland, who had an intellectual disability, quickly discovered the inhumane realities of Pennhurst, including neglect, beatings and sexual assault. And as a Black child, he encountered the toxic racism roiling life both outside and within the institution’s walls.
“After that long ride up there, it was just horrible,” Johnson wrote of his arrival at Pennhurst in a posthumously published autobiography, “Lost in a Desert World” (2002, with Karl Williams). He described himself as having been “lost and lonely,” as if “in a desert world.”
“I thought I would be there forever,” he added.
But Johnson did get out, and would see his family again. More remarkably, he would survive a prolonged and difficult transition to the outside world and emerge as a pioneering champion for the disabled. Through speeches across the country and in courtroom testimony, he played a significant part in the shutting down of Pennhurst in 1987. He also assisted in the release of countless people from other state institutions. By demonstrating that the developmentally disabled could speak up for themselves, he was at the forefront of an emerging self-advocacy movement that would take hold in the Philadelphia area in the 1970s.
As president of the Philadelphia chapter of Speaking for Ourselves, a Pennsylvania organization that later expanded nationally, Johnson became a spokesman and a mentor for others who had been institutionalized, including Deborah Robinson, who succeeded Johnson as president.
“He was a strong and powerful speaker,” Robinson said in an interview, “who believed in people getting out of institutions, living in the community and having their own voice.”
Johnson began every speech with his mantra: “Who’s in control?” He urged his audiences not to feel trapped by others dictating every facet of their existence. “The only way to break that barrier is to tell people that you are in control over your own life and in your own ways,” he declared.
When Johnson died on Aug. 29, 1994, at 48 after being trapped in a house fire, he left an indelible legacy: his work on behalf of one of the most disenfranchised segments of society. He became president of the board of Speaking for Ourselves and a board member of Self Advocates Becoming Empowered, a national organization. When President George H.W. Bush signed the landmark Americans with Disabilities Act on July 26, 1990, on the South Lawn of the White House, Johnson was there, part of a delegation that had arrived to witness that historic moment.
“It is impossible to know the courage of a man who had slung at him the worst labels and insults imaginable, who suffered abuse and neglect, and who belonged to a group totally discounted by society,” Nancy Thaler, the former deputy secretary of the Pennsylvania Office of Developmental Programs, wrote in an open letter after his death, “but who nevertheless stood up in public to speak for himself and his people. Roland gave voice to the people. Roland made us listen. Roland changed how we think about disabilities.”
James W. Conroy, a medical sociologist who worked on the litigation that led to the closing of Pennhurst, worked closely with Johnson in overseeing studies of what happens to people when they leave institutions.
“He motivated his friends and others at Speaking for Ourselves, and he really pushed the movement toward freedom,” Conroy said in a phone interview. “His was a fantastic contribution unlike any I’ve ever seen.”
Roland Johnson was born in Philadelphia on Sept. 14, 1945, to Grace and Roy Johnson. His father was an auto mechanic, his mother a housekeeper. Roland’s twin, Rosemary, died in infancy. With nine children,life was a struggle for the Johnson family. Because both parents had to work, the older children had to care for the younger ones.
When it became clear that Roland had been born with an intellectual disability, his parents were urged to put the baby in an institution, the norm at the time. But Roland’s parents refused to do that and tried to raise him at home.
“His family failed him,” LaVerne Cheatham, his closest sibling, said in an interview. “It was a sad situation. All of us, including me, didn’t give him what he needed.” She said of her mother, “There wasn’t a day that she didn’t worry about him.”
With public schools unable or unwilling to accommodate him, he stayed at home. In his book, Johnson describes himself has having had an insatiable appetite and a penchant for stealing food from stories and running away. His mother, he wrote, “didn’t know how to handle me.”
To punish him, he said, she’d first heat a knife on a stove. “Then she put it on my hand and burnt me with it,” he wrote. “And then she had an iron and she whipped me with the iron cord and made bruises all over my back. I don’t blame her for it — I probably needed it, a licking. My mother tried but she couldn’t take it anymore.”
His parents turned to the Philadelphia children’s court for help. Instructed to send him to a state institution, they chose Pennhurst, originally called the Eastern State Institution for the Feeble-Minded and Epileptic when it opened in 1908.
“This is it for me,” Johnson remembered thinking. “I guess I will be locked up in there, in a big cellar with locks.”
At Pennhurst he was traumatized by the emotional and physical abuse. He was ridiculed: “You’re stupid. You’re crazy. Dummy, Dopey, don’t know nothing.” He witnessed patients being beaten by other patients with broom handles and hid under the bed to avoid the same fate. He saw a young patient drink a bottle of liquid Thorazine, an antipsychotic, and die of an overdose. A young friend was strangled with a rope and left to die in a filthy, rat-infested punishment ward. In his frustration and anger, Johnson broke windows, for which he was locked in the punishment ward and forced to scrub its walls and floors.
The sexual abuse began early on. “All this stuff happened late at night,” he wrote, adding, “They did awful things to me.” From multiple rapes, he said, he contracted sexually transmitted diseases. Years after he left Pennhurst he learned that he was H.I.V. positive.
Because the institution was severely understaffed and overpopulated, Johnson and others were forced to do laundry and maintenance and care for the young children and babies. “Nobody got paid,” he wrote. “They would work, work, work.”
Pennhurst was once called “the shame of the nation,” according to Preserve Pennhurst, a website dedicated to preserving the lessons from its dark legacy.
In 1968, Bill Baldini, a Philadelphia television news reporter, produced a six-part exposé about Pennhurst called “Suffer the Little Children.” Johnson was one of the children he interviewed.
“We ship them 25 miles out of town to an institution and forget them, while they decay from neglect,” Baldini said in the introduction to the series. “Zoos spend more on their wild animals than Pennsylvania spends on its 2,800 patients at Pennhurst.”
The series resulted in lawsuits that led to Pennhurst’s. Johnson was released in 1971.
Afterward he stayed with his family, but the old tensions flared up anew, and before long he moved out, rooming in boardinghouses and holding flow-paying jobs. At one boardinghouse he got into a fight with another former patient and was arrested. “The police threw me against the wall and threw me in the paddy wagon, and it hurt my head,” he recalled in his book.
A bicycle accident and a series of illnesses landed him in a hospital. He eventually joined a psychiatric day program, and his life began to improve.
Johnson heard about Speaking for Ourselves in the early 1980s while working as a janitor. He went to a conference and stood in the back to observe. Surprising himself, he spoke up. “We’re tired of the old system,” he recalled saying. “We need to make things change, to make things happen.”
Mark Friedman, who helped found the organization, saw something in Johnson.
“He found great camaraderie with other disabled people, who accepted him and loved him,” Mr. Friedman said in a phone interview. “To this day, people still talk about him and share stories and still look up to Roland — and it’s been decades since he passed.”
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