Sunday Book Review

Transforming Madness: New Lives for People Living with Mental Illness
by Jay Neugeboren
Publisher: University of California Press, 2001)

Jay Neugeboren is an acclaimed novelist (The Stolen Jew) and short story writer who also teaches at UMass, Amherst. In his 1997 memoir, Imagining Robert, he wrote about his struggle to help his brother who suffers from schizophrenia. After decades of difficult hospitalizations and unsuccessful treatments, in this book he reflects on a mental health care system that can be more confusing than the illnesses themselves.

Not just a memoir, this book is also a study of history, economics, psychology and neurochemistry. In a clear and thoughtful manner, Neugeboren explains the complicated mental health system and offers evaluations of various treatment programs. He paints a picture of a profession divided between medication and therapeutic approaches. Most inpatient psychiatric care in the U.S. is now provided by general hospitals. In these hospitals and in pharmaceutical research, the goal is to make mental illness medically curable like any other illness. In just the last decade, medications have become more effective with fewer side effects. Although Neugeboren acknowledges the value of medication, he states: "Drugs are not enough.” Because the race for a medical cure has left psychotherapy and follow-up care under funded, he argues, mental health care now lacks the deep personal involvement of the human element. In the wake of pharmaceutical successes, both inpatient and outpatient care have been cut back by HMO’s.

But once the responsibility is placed on the chemical, then the illness becomes a mere disease. The patient or “consumer” and doctor are no longer active agents. Neugeboren explains how this lack of accountability can lead to barbarous treatment. Professionals assume the role of experts and consumers must be compliant. Even normal responses become pathologized. Coercive methods are used to force treatment, which leads to clashes of values, fear, and anger. Consumers often experience mental health services as dehumanizing and lacking reciprocity. They still encounter physical and emotional abuse, excessive meds with debilitating side effects, a lack of programming or rehabilitation services, and an incompetent, ever changing, and uncaring staff. Their families are left to cope alone with difficult doctors and the unpredictable terror and heartbreak of having a family member in a mental hospital.

Neugeboren makes the case that the stigma, low social status, low expectations, restricted choices and self-determination that consumers experience in the mental health system and society leads to chronic hospitalizations. A hospitalization can stabilize the consumer and allow them to get on with their life. But do you stop going to the doctor after the initial treatment? How do you get back, and what kind of help will you need? Will the treatment hold? What if it worsens and becomes fatal? What about the patient’s fears if they don’t have a place to live, meals, money, a job, school, or friends?

It is hard to retrieve lost hopes and feelings when large portions of life are stolen by illness. Bad residential situations, chronic unemployment, and loss of property, money, friends, self-esteem, dignity, rights, and hope only compound and intensify madness. Consumers (sometimes rightly) believe that others think they are less than human, less worthy, have fewer rights or possibilities. They become trapped by the belief that they are freaks, failures, and outcasts. Naturally, they fear that they can’t make it in the world and become captured in the system. This learned helplessness leads people right back into the system. Ironically, lower functioning consumers handle these falls from grace better than their more successful peers. In a way, their fall is shorter because they started so low.

For me, the most valuable parts of the book discussed the possibilities for life with a serious mental illness. It displays an understanding and sympathy for those who suffer and describes the day-to-day bravery it takes to live with a mental illness. The book profiles people who have recovered and built new lives, often after having been pronounced medically hopeless. He describes a slow change that is allowing the severely mentally ill to get an education, hold down jobs, and maintain relationships even without a cure. These new recovery programs offer peer support and community interaction as well as psychotherapy and medication.

Neugeboren’s brother seemed to do better long-term relationship with therapist or trusted social worker. This taught him that it is the presence of hope, love, trust and faith that helps people away from madness into a fruitful life. The greatest obstacle seems to be that most people don’t think they can recover. But most consumers show a remarkably resilient spirit and a desire to do the steady and sustained work it takes to heal. He urges consumers to see their illnesses more as disabilities rather than diseases. A person may recover although they still may have symptoms from time to time. There may never be a cure, just dedicated individuals with kindness.

The more integrated a consumer can become in “normal” life, the more beneficial it can be for their future health. He solicits suggestions from consumers about what changes would help them to integrate. These include:
- A flyer to encourage cops to be kind to mentally ill: “we tend to shoplift, piss, and annoy but jail costs more and is dangerous.”
- Medical alert bracelets.
- Hospitals could hire consumers to be companions.
- Realize that we are easily tired, hurt, confused.
- Don’t mainstream consumers. There’s shouldn’t be shame that we can’t be the same.
- Help kids to graduate so they can make it without parents.

Most strikingly, Neugeboren dispels a lot of myths that surround mental illness. Most of us know someone who has been in the mental health system and yet society understands very little about these illnesses. This book profiles consumers who aren’t violent and are making full recoveries from severe psychosis. It is clear that these consumer’s illnesses are not the fault of a weak will. Some lobby openly and freely for better care. Movies often reduce mental health success stories to personal solutions, heroes and miracles. This kind of portrayal absolves others of responsibility and isolates the ill. Neugeboren’s book offers hope and solutions that we can all participate in.