Perhaps no disease is as devastating as schizophrenia. This condition is particularly destructive because it leads typical adolescents to become young adults who experience delusions, hear voices, and behave in bizarre ways. These changes are particularly shattering to parents, who not only must witness their beloved children disappearing into incomprehensible and inaccessible states but also must serve as the primary caregivers for their disturbed children. At the same time, they struggle with the fundamental dilemma of who will take over their caretaking responsibilities after they die.
Journalist Ron Powers's book about his two sons' descent into the singular world of madness, and for one, suicide, provides a sensitive, nuanced, and powerful account of the havoc that schizophrenia creates for ill persons and their families alike. Powers recounts the story of how his talented sons Kevin and Dean changed from normal teenagers growing up in Middlebury, Vermont, to college students who succumbed to the paranoia, disorganization, withdrawal, and occasional violence that mark this illness. Their once-promising futures in music and writing dissolved into chaotic realms of confusion, erratic actions, and police interventions. The disruption and turmoil of their sons' lives also consumed the worlds of Powers and his wife.
Powers situates his sons' plight within the disastrous policy of deinstitutionalization that has dominated responses to persons with serious mental illness since the 1950s. Originally intended to transfer the treatment of the seriously mentally ill from custodial state hospitals to community-based facilities, deinstitutionalization has instead led to homelessness and neglect, if not to transinstitutionalization in jails, prisons, and nursing homes. Later, the 1996 Health Insurance Portability and Accountability Act, which was designed to protect patient privacy, exacerbated the dreadful situation of family caregivers for the seriously mentally ill because it did not allow them to receive information about their loved ones. In addition to implicating short-sighted and mean-spirited governmental policies, Powers indicts the once-influential duo of renegade psychiatrist Thomas Szasz and founder of Scientology L. Ron Hubbard for their rabid antipsychiatry activism that precluded paternalistic interventions on behalf of persons with mental illness. The influence of the antipsychiatrists, combined with anosognosia—the unwillingness of people with schizophrenia to believe that anything is wrong with their minds—has meant that family members can rarely secure brief hospitalizations, enforced medication, or other forms of community treatment for their children. The result is that many people with schizophrenia are often victimized, impoverished, and unemployed, lacking adequate housing and not obtaining even minimal treatment. They are often arrested and imprisoned, which exacerbates their many maladies.
To overcome the grim situation of the seriously mentally ill associated with deinstitutionalization, Powers insists that “America must turn its immense resources and energy and conciliatory goodwill to a final assault on mental illness” (xxi). Although short on specifics, he advocates for the widespread establishment of community treatment facilities specifically designed to deal with serious mental illness, acute-care hospitalization, more flexible policies to ensure medication compliance, and early identification and intervention programs.
As remarkable as it might seem, the dire situation of the Powers family probably illustrates the best-case scenario for people with schizophrenia. When their son Dean admitted to using alcohol, they got him to seek counseling from a psychologist. After further problems surfaced, they enrolled him in a private school in Maine. Later, Powers used his connections to find Dean a job on a movie set and to purchase property for him. Their other son, Kevin, attended an elite music school in Michigan, where he displayed the first symptoms of schizophrenia. His mother rented space in a local hotel, drove Kevin back and forth from his classes, and made sure he attended daily consultations with his therapist. As their sons further descended into their illnesses, both parents were in constant touch with psychiatrists and other mental health professionals. Few parents have the financial, therapeutic, and cultural resources that the Powers family was able to mobilize in their fight against schizophrenia.
While Powers presents both a powerful personal story and a well-grounded critique of the current response to persons with schizophrenia, his book also has some serious flaws. It alternates chapters dealing with his sons' plights with chapters about the history of responses to serious mental illness. Just as the reader becomes engrossed in the gripping personal story of the Powers' family struggles with mental illness, the narrative abruptly changes to unrelated aspects of institutional history. The result is that the book's potent chronicle of a family's experiences becomes disjointed and loses its natural momentum.
Another problem is that, while Powers insightfully identifies anosognosia as a central characteristic of schizophrenia, he doesn't adequately deal with the central dilemma that this phenomenon creates: How is it possible to reconcile respect for individuals' choices with taking actions such as involuntary commitment or forced medication that strive to help and protect them but at the same time override their wishes? Powers also advocates for early intervention during the at-risk or prodromal stages of schizophrenia, before the disease manifests. The problem is that many “symptoms” that become apparent in these periods also characterize behaviors of many ordinary adolescents, so efforts to identify schizophrenia before it becomes serious may lead more to false positives than to accurate predictions. The costs of premature, incorrect labels can be substantial. Powers also strongly rejects efforts to legalize marijuana because of its role in exacerbating or even causing schizophrenia, yet he ignores the role that criminalized drug policies have had in leading to the jailing of many persons with serious mental illnesses.
Perhaps most depressing of all, Powers's characterization of the current deplorable state of treatment of people with schizophrenia might actually underestimate the recalcitrance of the problem. His book was written before the as-yet-unknown consequences of the efforts of President Trump and the Republican Congress to repeal and replace the Affordable Care Act. The ACA has expanded coverage for behavioral health and medical services, helped to integrate a fragmented mental health service sector, expanded Medicaid as a safety net for the neediest, and prohibited discrimination on the basis of preexisting conditions. It is probable that the benefits the ACA has brought to those with serious mental illnesses will be the first to be repealed and the last to be replaced. The plight of crazy people and their families that Powers so eloquently describes is, sadly, likely to become even worse in upcoming years.