A Secret, A Disability, A Journey Into the Unknown


June 7, 2009

The best documentaries, said one creator of that art form after a recent screening in Baltimore, reveal something that is outside the experience of those watching the film.

His words resonated for me. For the past several years, I have immersed myself in the life of someone I never knew, someone whose daily routine couldn't have been more different than mine. She was my aunt, and she was a family secret.

More precisely, she was my mother's secret. Mom never talked about having a sister, and only after Mom's death did the first wisps of her secret come into the light.

Her name was Annie Cohen. She had physical and mental disabilities that came to define her and her existence. I know now, based on medical records unearthed from a mental hospital, that Annie wanted nothing more than to be like other girls, to live a “normal” life, hold a job and live independently. But she was born at a time (1919) and place (Detroit) that dictated a different fate.

Annie's physical disability was evident soon after birth. Her right leg, bent beyond recovery, led to years of attempts to straighten it. A cast at age two gave way to a brace, and when neither of those methods worked, a leading orthopedic surgeon recommended amputation. At seventeen, she lost the leg that never worked as it should, and found herself with a wooden one that “never fitted very well,” a social worker later wrote.

In the spring of 1940, Annie's increasingly erratic and paranoid behavior drove my grandmother into the arms of a local hospital. There, a neurologist told her that Annie probably belonged in an institution for the feeble-minded, in the language of that time, but that there was a waiting list. He recommended commitment to a public mental hospital as a temporary measure.

My grandmother followed his advice, signing a court petition that set off a rapid chain of events, including required examinations by a succession of court-appointed physicians. Within two weeks, on the eve of Annie's 21st birthday, she was escorted to Eloise, the Wayne County mental institution. She stayed for 31 years, until not long before her death.

In the parlance of that era, Annie and her fellow patients took on the same status as those serving prison sentences. They were “alleged” to be insane, they were “inmates” in the institution, they were “paroled” upon discharge. The main difference between a mentally ill patient and a criminal at that time? A criminal had more rights.

We have in our heads an image of the bygone public mental hospital, with warehoused patients living in awful conditions. There's truth in that image, of course, but it doesn't begin to explain the complex, evolving reality of mental health treatment in the United States over the past 150 years. The overseers of Eloise Hospital saw themselves as progressive reformers, dedicated to making their patients' lives better. Nearly every generation saw itself as improving on the previous one. That's what I found so fascinating. We now regard lobotomies with appropriate horror, and yet the man who gave us the lobotomy won a Nobel Prize for his work in 1949.

When Annie was sent there, Michigan operated under a paternalistic standard: The state had an obligation to treat its mentally and physically disabled population. Treatment often meant institutionalization, which meant an inexorable growth in the mental hospital system. Today's laws regarding involuntary commitment contain multiple safeguards to protect patients against being sent to institutions against their will. The legal burden has shifted to the police, the courts and the doctors. They must prove that patients are a danger to themselves or others, which has been the standard for involuntary commitment since the late 1960s.

Finding ways to inhabit Annie's world took me to places far outside my experience. I stood in the school hallway where she walked in that brace, and saw the polished wooden handrails that she held as she slowly made her way to class every day. I went to the Eloise admission building where a sheriff's deputy took her in April 1940. It's the only one still standing from the now-closed hospital. The county uses it for office space.

Sending Annie to Eloise labeled her as mentally ill. The doctors and staff there would have known of the tests showing an IQ level somewhere between mild and moderate retardation. But they wouldn't have focused on it. Ed Missavage, a psychiatrist who worked at Eloise for nearly 30 years, reviewed her records for me and pronounced her as the prototype of “a custodial patient.”

What did he mean? I asked.

“She's the type we don't ever think is going home,” he said.

Eloise “paroled” about a third of its 4,000 patients every year. Annie wasn't ever one of those. As Missavage explained, my grandparents didn't know what to do with her, and the hospital would be reluctant to release her if she had nowhere to go and no way to support herself. Women without disabilities had trouble finding their place in the workforce in those days. How could a woman with disabilities find one? Today's group homes didn't exist then. Neither did programs aimed at providing training and jobs for the developmentally disabled, the phrase that governments now use in place of retarded and feeble-minded.

Experts who examined Annie's records said they thought if she were living now, she might have a shot at finding and holding a job. She could read, and she had enough self-awareness to tell a social worker that she wanted to be like other “normal” girls.

She never got that chance. At some point, she went from custodial patient to warehoused patient, existing more than living. How she spent her days is still pretty much a mystery to me. How she spent her life is a reminder of where we have been, and how much farther we can go.

Steve Luxenberg has been a senior editor with the Washington Post for twenty-two years, overseeing reporting that has won numerous awards, including two Pulitzer Prizes for explanatory journalism. He lives in Baltimore, Maryland. For more information please visit www.steveluxenberg.com. This post is Copyright © 2009 Steve Luxenberg, author of Annie's Ghosts: A Journey Into a Family Secret.