Shucking Off Shame

by Margaret Hawkins

Chicago, Illinois

March 28, 2026

Approximately one in 20 Americans suffers from severe mental illness. That comes to around 17 million. Multiply that number by three or four to represent each ill person’s closest family members and you begin to get an idea of how many Americans are impacted in life-changing ways by these devastating diseases. For many, mental illness is a final, unspeakable stain.

Barb's high school graduation portrait, 1961.

I spent much of my early life anticipating and, frankly, dreading the moment when I would assume responsibility for my older sister. Not that we spoke of it. Although Barb hadn’t been formally diagnosed and wouldn’t be for years, my family realized sometime in her late twenties that she was severely mentally ill. It didn’t take much research to conclude that she suffered from schizophrenia. But my parents were afraid and ashamed, and they didn’t discuss it openly. When Barb refused their early offers of gentle forms of help, they, already suspicious of the medical and psychiatric establishment, were at a loss as to what more to do. 

So they kept to themselves, kept stiff upper lips, and took care of her at home. Barb was never treated, never medicated, never hospitalized. My parents were understandably terrified of relinquishing her to a notoriously cruel system that seemed the only recourse for families of the mentally ill in the 1970s. And they didn’t reach out for other kinds of support either. Shame, stigma, and fear kept my parents silent. This went on for over thirty years. I spent decades thinking and worrying about what to do when my turn came.

The author and her sister Barb,  1959.

Those decades went by, and my parents died, first my mother, then, ten years later, my father. Suddenly I was legal guardian to my 63-year-old sister, who now lived alone in the crumbling house we’d grown up in, which she refused to leave, even to carry the garbage from the back door to the alley. Nor would she answer the phone or make a call. She had no way of getting groceries, no funds of her own and, even if she had, no inclination to pay the many bills that piled up. Our father had handled all this, and he would bristle at any suggested changes. Now it was my turn, but without a network of support any change felt impossible.

My farfetched hope was to get Barb psychiatric help while somehow honoring her wish to stay at home. I’d read about drugs that might alleviate some of her symptoms, symptoms that appeared to torment her and isolate her from even the most rudimentary human interactions. But how to connect her with a psychiatrist and get these drugs prescribed? How to get her to take them? That these things could in fact happen still feels like a miracle.

Vincent Van Gogh, “Old Man in Sorrow (At Eternity’s Gate),” 1890, oil on canvas, 32 1/4 x 25 3/4”. Courtesy of the Kröller-Müller Museum, Otterio, The Netherlands.

But it’s not a miracle available to most who suffer this type of condition. My sister had a place to stay, an advocate when she couldn’t advocate for herself, and a team of dedicated professionals — social worker Wendy Trafny, psychiatrist Dr. Steven Weinstein, and caregiver Yvonne Flowers — who stepped forward and went above and beyond their conventional duties to help Barb achieve a fuller life. Barb was lucky. People with severe mental illness are among the most marginalized people in America. Many of them land in prison or are otherwise institutionalized and forgotten; others live on the street. All of them deserve care and respect. Shelter and food. It shouldn’t be so difficult to ensure a decent life for these, our neighbors and fellow human beings, and it shouldn’t depend on luck but on well-conceived public policy.

William Hogarth, “Scene in Bedlam,” 1835 , etching and engraving, 4 1/16 x 16”. Courtesy of the Princeton University Art Museum, Princeton, New Jersey.

My book, “At Home with Schizophrenia,” is a revised and updated version of my earlier book, “How We Got Barb Back.” It tells my family’s story, beginning with Barb’s promising early life. Part One takes the reader through the inexplicable changes we observed in Barb, the climate of shame that surrounded mental illness when it struck my sister, my parents’ fears and the hopelessness that resulted in the stasis of their life with Barb over many years. Part Two describes what happened next.

This book is an homage to people everywhere who suffer from severe mental illness, to those who care for and about them, and in particular to those who helped my family. It is also a plea to collectively shuck off the shame, stigma, and silence that surrounds mental illness. It is evidence that help and change are possible.

But much work remains. Families caring for mentally ill loved ones still face terrible choices — medical, financial, and personal. Open discussion, better laws, community mental health care, a kinder and more compassionate public policy will all help. Simple respect for our fellow travelers is the heart of it. The Netherlands and the UK are light years ahead of the United States in how they handle this particularly human form of illness. Here we valorize independence and individualism, but it’s past time to embrace less selfish values. 

I have seen that it is possible to reach someone who seems to be locked out of the world by this mysterious condition we know as schizophrenia. With a small dose of antipsychotics and the respect and help of many, my sister is now living a life my parents could hardly have imagined for her. It’s still not easy, but it’s possible. 

Margaret Hawkins is a writer, critic and educator. Her books include “Lydia’s Party” (2015), “How We Got Barb Back” (2011) a memoir about family mental illness, and others. She wrote a column about art for the Chicago Sun-Times, was Chicago correspondent for ARTnews, and has written for a number of other publications including The New York Times, the Chicago Tribune, Art & Antiques and Fabrik. She teaches writing at the School of the Art Institute of Chicago and Loyola University. 

Visit Margaret Hawkins’ website.