guest post by Kathryn Andrews, a member of the Southwest Conference’s Widening the Welcome Committee and Desert Palm United Church of Christ
“What if you raised a child who grew up sunny, loved, and loving, perhaps unaccountably talented, a source of family joy, only to watch that child slowly transform in adolescence into a mysterious stranger, shorn of affect, dull of gaze, unresponsive to communication – and perhaps worse?” This is one of wrenching questions author Ron Powers asks in “Nobody Cares About Crazy People,” the story of his schizophrenic sons.
The book is more than a chronicle of one family’s struggle with a serious mental illness. It also serves as an indictment of our national approach to dealing (or not dealing) with mental illness. As Powers recounts, mental hospitals began to appear in the early 19th century, including Philadelphia Hospital, which charged admission to view the insane residents in its basement. In 1841, Quaker Dorthea Dix discovered that violent criminals were sharing jail cells with persons with mental illness in Massachusetts. She devoted the rest of her life to lobbying for dedicated care outside of the penal system, and by 1890 thirty-two new asylums were in place. Yet even with these reforms, individual care and treatment at the overflowing asylums was hard to come by.
President Kennedy took steps to address this overburdened system by signing the Community Mental Health Act (“CMHA”). The legislation, crafted in consultation with psychiatrists and health executives, was aimed at releasing 560,000 patients from state-run asylums to 1,500 new community health centers around the country. The hope was that new “wonder drugs” like Thorazine would enable this population to navigate the outside world and become productive. The CMHA liberated 430,000 patients by 1980, but a combination of factors thwarted the transition to community care.
Over the ensuing decades, budget pressures diverted funds that could have supported the CMHA centers. Meanwhile, Congress passed the Medicaid act, which prohibited federal reimbursement to states for psychiatric patients in state hospitals. The act’s objectives were to encourage patient release from such institutions and to prod the states to assume responsibility for care and treatment costs. The states, however, showed little interest in taking the reins. Without the community follow-up care envisioned by the CMHA, many became chronically ill, homeless, or incarcerated. The upshot was that many of these persons did not become “de-institutionalized” but rather traded one institution for another as the U.S. penal system replaced the mental hospital.
Although American mental health care remains haphazard and chaotic, Powers takes heart from the progress made in researching the causes and treatments of mental illnesses. New research has identified 128 gene variants likely to be involved in the abnormal brain development seen in schizophrenics. The research also reflects that environmental factors likely influence the onset and degree of the disease. Meanwhile, advances are occurring in magnetic resonance imaging, and psychotropic medicines can regulate serotonin and dopamine, which affect behavior.
As the Powers family learned too late, some antipsychotic medicines can be taken by the “depot” method of periodic injection. This method eliminates the need for self-administered oral dosages and ensures consistent medication. This consistency becomes critical when a patient develops “anosognosia,” the false conviction that nothing is wrong with the patient’s mind. Anosognosia caused one Powers son to abandon his medications and end his life just shy of his 21st birthday. The other son survived and lives near his parents.
For the author, the future of mental health care for his surviving son and others with mental illness, “will depend upon whether Americans can recognize that their psychically troubled brothers and sisters are not a threat to communities but potential partners with communities for not only their own but their community’s regeneration. . .. The mentally ill people in our lives, as they strive to build healthy, well-supported, and rewarding lives for themselves, can show us all how to reconnect with the most primal of human urges, the urge to be of use, disentangling from social striving, consumer obsession, cynicism, boredom, and isolation, and honoring it among the true sources of human happiness.”