Overlooked No More: Roland Johnson, Who Fought to Shut Down Institutions for the Disabled

“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.