(Excerpted from the forthcoming book, The Autism Full Employment Act, to be published in May.)
If you know someone with a mental health condition that has undermined their employment, you know two truths: first, how stubborn the mental health condition can be to overcome, and second, how valuable holding a job can be when possible.
Both of these truths are illustrated in the recounting by Oliver Sacks, one of the most prominent neurologists of the past half-century, of the life of his brother Michael. Over a career from the late 1950s until his death in August 2015, Oliver Sacks explored brain differences and disorders in thirteen major books and hundreds of articles. Sacks is perhaps most widely known for his treatment of post-encephalitic patients in New York in the 1970s—the basis for his book, Awakenings, later made into a movie. Additionally, Sacks did as much as anyone to introduce autism to a general audience in the United States, through a series of articles and the 1995 book, An Anthropologist on Mars. This past week, a documentary on Sacks premiered on the PBS “American Masters” series.
Michael’s story is introduced in Sacks’ 2001 book, Uncle Tungsten, and described in greater detail in Sacks’ 2015 autobiography, On the Move.
Sacks’ father and mother were well-known physicians in England. His two older brothers showed intellectual gifts at an early age (his brother Marcus spoke half a dozen languages by the age of sixteen), and later they too became physicians. Michael showed similar promise as a young man. Sacks describes Michael in his youth as “very intelligent; he read continually, had a prodigious memory…was able to recite Nicolas Nickleby and David Copperfield by heart.”
But at age 15, Michael begin to show signs of schizophrenia, and he began a rapid descent into a world of delusion, anger and recrimination. Sacks writes,
“Torn between bliss and torment, fantasy and reality, feeling he was going mad (or perhaps so already), Michael could no longer sleep to rest, but agitatedly strode to and fro in the house, stamping his feet, glaring, hallucinating, shouting.”
MORE FOR YOU
In 1944, at age 16, Michael was admitted to a psychiatric hospital and given insulin shock therapy, which seemed to halt the psychosis. But it did not “cure” the psychosis and Michael over the next years continued to be plagued by psychiatric episodes—“violently agitated, shouting, stamping, hallucinated” states. Sacks remarks of his own departure from England in July 1960: “When I left England on my twenty-seventh birthday, it was, among many other reasons, partly to get away from my tragic, hopeless, mismanaged brother.”
Through a family acquaintance, the owner of a large accounting business in London, Michael was able at the age of 17 to find employment as a messenger delivering letters and packages throughout the city.The job provided structure, even purpose to Michael. Michael saw himself as providing a valued service, and was scrupulous in delivering the letters and packages directly into the hands of the recipient.
In the early 1950s, when the first tranquilizers came into use, Michael’s physician prescribed the tranquilizer Largactil to help control the hallucinations and delusions that had not ended. The psychotic episodes slowed, but also left Michael feeling dulled, muffled. “He had lost the sharpness and clarity with which he had previously perceived the world,” Sacks writes. Michael would tell Sacks, “It is likely being softly killed”.
After settling in America in 1960, Sacks had only sporadic contact with Michael, connecting mainly on family visits to London. Michael continued to work as a messenger, and live with his parents. However, to Sacks on his visits, Michael seemed increasingly solitary, alone. “My father hoped that our synagogue might provide moral and pastoral support, a sense of community, but Michael, who once attended synagogue regularly and wore tzitzit and teffalin (the Jewish prayer garments), lost interest and the synagogue lost interest in him.”
In 1984, the firm employing Michael was sold and after nearly 35 years as a messenger, he found his job eliminated. According to Sacks, Michael tried to learn new skills, teaching himself typing, shorthand and bookkeeping, but after several interviews, decided he would not be successful. He took up smoking and rarely ventured from the home: “He spent hours sitting in the lounge, smoking and starring into space; this is how I would usually find him when I visited London in the mid and later 1980s.”
After the father died in 1990, the family sold the home, and Michael moved into a nearby residence in London for elderly Jewish people with mental illnesses. Though the family worried about the move, Michael took it in stride. In fact, it helped bring him out of his isolation. He came to assume new roles in this community, helping other residents with tasks such as laundry, and (due to his lifetime of reading) becoming “a virtual encyclopedia whom the other residents could consult.” Michael lived until 2006; his death linked to his heavy smoking in later years.
Though Oliver Sacks is celebrated for his vast knowledge and clinical skills, he was not able to effectively treat his brother’s mental illness. Nor were the other leading psychiatrists and pharmacologists in England at the time. In the years since Michael’s death, new medications have been developed for a range of mental illnesses, but their effectiveness remains highly uneven, as do other treatments. In treating mental illness, as in other areas of social policy, scientists and experts continue to be humbled in their ability to influence human behavior.
Michael benefited from a family support network, outside of the government social welfare system. Recognizing Michael’s struggles, family members helped him gain access to mental health professionals, a secure home, and obtaining his messenger job. But the network dimmed over time, as the parents aged and younger family members moved away or became involved in other activities. After Michael lost his messenger job in 1984 and was searching for a new career, the family was not as available as in the past. Looking back in 2015, Sacks expresses regret that he did not do more, even when he was in England. Sacks writes,
“I could, I should, have been more loving, more supportive, while I was back in London, in medical school. I could have gone out with Michael to restaurants, films, theatres, concerts; I could have gone with him on visits to the seaside or the countryside. But I didn’t, and the shame of this—the feeling that I was a bad brother, not available to him when he was in such need—is still hot within me sixty years later.”
Today, employment professionals are more aware than ever of mental illnesses. In particular, the focus by city and state governments on the homeless, a high percentage of whom have forms of mental illness, has led employment professionals to recognize the ways that mental illness leads to repeated job loss. This is so even when generous supportive counseling, coaching, and other employment services are present.
Yet, there are cases where someone with a mental illness is able to hold a job—often when an employer is able to focus on the employee’s strengths rather than weaknesses. When that occurs, it can be a “game changer”, in providing structure, a role, earned income.
In Michael’s case, employment did not “solve” his troubles. At the same time, his messenger job, however modest, became one of the most positive elements of his life, and he was able to keep it for over 35 years. It was when the job was eliminated that his isolation increased and health declined. Later, at the Jewish Home for the Aged, he became less isolated as he found services he could provide to others.
The role of employment for adults with mental illnesses, and more generally for adults with disabilities is sometimes minimized. If anything holding a job can play a more important role for these adults than for the general population—as Michael Sacks’ story, in all its complexity, suggests.