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A review of Kenneth Paul Rosenberg's Bedlam: An Intimate Journey Into America’s Mental Health Crisis by Lloyd I. Sederer.
Dr. Ken Rosenberg’s sister, Merle, first opened for him the dark window into serious mental illnesses (SMI) when he was 14 years old. She was six years older and her increasingly odd and oppositional behavior erupted into paranoid psychosis. She was hospitalized but, as too often happens, her condition worsened.
Merle almost killed herself by jumping out her bedroom window, evidently to escape delusionally imagined intruders. With psychosis, a person in its grip cannot tell their own fictional ideas from reality, though knowing the symptoms of a serious mental illness does little in comprehending some of its unimaginably destructive behaviors.
Their parents were terrified but also paralyzed by the shame of having a daughter with a mental illness. What Dr. Rosenberg says is that “…my family’s shame is America’s greatest secret.” His future identity as a psychiatrist was then solidified as his family’s sought to shroud what did not, could not, go away.
SMI includes psychotic illnesses, like schizophrenia or excited states of mania, as well as severe states of depression and PTSD. Dr. Rosenberg, today an accomplished psychiatrist and documentarian, describes the emergence of his sister’s illness: the early outbursts of emotions, an inability to be soothed, and then, when she entered adolescence, the full expression of psychosis. Yet, still, in their home, her illness was not to be mentioned: his parents asserted that she had none.
One sad irony, thus, is that not only do patients with SMI often deny their illness, so too do their families. As we read Bedlam, we appreciate that this collective, hidden shame abounds across our country and inhabits most of our global community.
For countless centuries, people with psychotic illnesses have been considered possessed, or were banished, tortured or killed. Only in recent centuries has a scientific explanation of SMI prevailed. Yet fear, stubborn social stigma and vast, misspent monies have fashioned a mental health “system” given to institutionalization, criminalization, or simply old-fashioned neglect as we witness people with SMI as chronically homeless, living on cardboard in our streets or transiently contained in shelters they themselves have the good sense to try to avoid.
Bedlam’s title is that of the infamous asylum for the “insane”, in England, founded in the 14th C. Today it is called The Bethlem Royal Hospital. Yet, “bedlam” has lived on as a slang term, connoting uproar.
Dr. Rosenberg’s Bedlam gives us both an artfully told history of mental disorders (and their diverse forms of remedy) and the pathos of his personal story. Dr. Rosenberg is unflinching in his examination of asylums, abroad and in the US. Of the neglect and abuse that even well-meaning professionals and bastions of society have prosecuted against those who are different, ill, or profoundly misunderstood—and thus subject to a host of usually well-meant but desperate (and thus often harmful) efforts to bring them to their senses (when it is our senses that more need changing).
For the past dozen years, I have been the chief medical officer of the largest state mental health agency in the US. Our agency operates 22 state hospitals, scores of public mental health clinics and delivers care to over 10,000 men and women with mental disorders incarcerated in state prisons. In other words, I know, first hand, about state hospitals and public mental health care. I am proud of what my state agency has been doing, and painfully aware that there is so much more we need to do. And will do, given the time and support needed.
Bedlam has the depth of an encyclopedia of psychiatry but told by a fine writer and storyteller. Dr. Rosenberg’s learned messages unfold in his prose. He writes with passion, compassion, experience and wisdom. For those in this field, or not, we learn about Dr. Rosenberg’s mentors and extraordinary contemporaries, including Drs. E.F. Torrey, Lisa Dixon, Don Goff, Joshua Gordon (now heading up NIMH), Patrice Kahan-Cullors (whose brother suffers with schizophrenia and who founded Black Lives Matter), Judge Steven Leifman, Norman Ornstein and Judith Harris, Former Surgeon General David Satcher, Professor Elyn Saks, the indefatigable work of Former Congressman Patrick Kennedy, and others who have made great contributions to psychiatry and mental health.
The final section of Bedlam is written for persons with SMI and their families. Professionals should take heed as well. Dr. Rosenberg conveys helpful and practical information about understanding and responding to the problems of SMI, as well as how to navigate the often-baffling ‘system’ of mental health services.
Bedlam, the book, will be followed by its PBS documentary, due out in 2020. At the recent, annual, national meeting of The National Council on Behavioral Healthcare, I had the privilege of screening sections of the film and talking about them with Dr. Rosenberg, MD, also the film’s writer and director. His film drew the largest crowd of all our showings this year; we had to turn people away in an auditorium that held over 400 people. Bedlam, as a documentary (as well as in this book), is like throwing a stick of dynamite into the dark and troubled history of mental health care for those with SMI, especially for the past 60+ years. The film holds very true to the stories in the book, carefully portraying how our country has failed those who have SMI—and their families. Together, the book and the film, without apology yet with hope, expose the grave social, economic and moral consequences of neglecting those affected, their families and communities. As a psychiatrist and a family member, Dr. Rosenberg gives us a uniquely informed and personal experience in his book, Bedlam—and as you may see when PBS airs the film, which was a 2019 Sundance selection.
I thank Dr. Rosenberg for shining his highly informed lens on past and present examples of how our medical and social efforts with SMI have missed the mark, sometimes even the entirety of the target. His work in this book, and its fellow documentary, will not only fix our attention on what not to do but also what can be done to enable people with SMI to have what we all want. Namely, a life of relationships, work, contribution, and dignity.
Dr. Lloyd Sederer is a psychiatrist, public health doctor, and author of The Addiction Solution: Treating Our Dependence on Opioids and Other Drugs.
