Reading intently, I felt my eyes begin to tire by late morning. For a break I turned to the sections of illustrations and photographs in the book’s middle. Ordered chronologically, they were fascinating in their own right. One was an early lithograph of McLean Hospital outside of Boston, which included the formal title of “lunatic asylum.” Others depicted attempted reforms, as the state hospitals became ever larger and more inhumane during the late nineteenth and twentieth centuries. As I thumbed through the last section of more recent photos, a caption caught my eye, stating that the picture above was of a men’s dorm room at Philadelphia State Hospital, known as Byberry, in the 1940s.
Wait! Dad had been at Byberry right at that time. Suddenly I was on full alert, all weariness erased.
Authoritative sources reveal that Byberry was severely overcrowded and widely regarded as the worst mental hospital in the United States. It had been the subject of a Life magazine exposé entitled “Bedlam 1946” and was the partial inspiration for the book and film The Snake Pit, which raised the consciousness of the nation in the late 1940s about the plight of people placed in such warehouses. My eyes leapt to the photo above: a stark black-and-white image of a large room filled wall to wall with beds—utterly sterile, totally dehumanizing. The photo on the facing page portrayed wide-eyed, despairing women wandering aimlessly in one of Byberry’s ghastly rooms. The crowding was so severe that there was no place to sit.
Over the following years I viewed newly created websites documenting the history of the Byberry monolith, which at its peak held 7,000 inmates, far above capacity. Photos taken by conscientious objectors who’d been placed at Byberry during the latter years of World War II—the same time Dad had been an inmate—were smuggled out, graphically portraying naked, gaunt men in stark, empty dayrooms. Raw sewage permeated hallways. Testimony from the 1940s documented beatings and deaths, at the hands of both staff and fellow patients. Officially suppressed, these accounts are now part of the institution’s legacy of horror. Byberry had been the home of the ultimate in stigmatization.
That winter morning, the images from another infamous Life magazine issue jumped into my mind, the ones taken during the liberation of the camps in the spring of 1945. In those iconic photos, emaciated inmates lean blankly toward the camera from stacked double-and triple-bunk beds, eyes bulging, with starvation hours or days away. The settings were all too similar: the same rooms full of urine and excrement, the same bone-filled faces beyond despair, the same stripping of any semblance of dignity. The same utter hopelessness, outside the watch of mainstream society. The hair at the back of my neck stood straight up.
In his 1948 book, The Shame of the States, which unveiled the despicable realities inside U.S. mental institutions, Albert Deutsch described the conditions he observed:
As I passed through some of Byberry’s wards I was reminded of the pictures of the Nazi concentration camps. I entered a building swarming with naked humans herded like cattle and treated with less concern, pervaded by a fetid odor so heavy, so nauseating, that the stench seemed to have almost a physical existence of its own.
I’d long wondered whether Dad’s accounts of Byberry had been exaggerated. Had he truly been beaten by fellow inmates as staff blocked access to the physical therapy room? Was the setting as depraved and inhumane as he’d intimated to me and recorded in his journals? Perhaps his psychotic thinking had been doing the talking. But the photographs, captions, and text before my eyes were no delusions. After all, Hitler’s objectives were to rid the earth not only of Jews but also of gypsies, gay men and lesbian women, “mental defectives”—those with intellectual disabilities—and people with serious mental illness. As a student of history, Dad knew. As a patient, he bore witness.
In the car with his brother Randall, translating the road signs into German, had Dad actually been overseas escaping from a camp? Of course not. But he’d been preoccupied with the Nazis since he was a teen. His obsession, fueled by his grandiose mania and underlying despair, led to his near-demise at age 16. At Norwalk, having lost 60 pounds after refusing to eat because of a Nazi plot only he understood, he resembled a camp survivor himself, given up for dead by the administrators. At Byberry, he wore filthy, institutional clothes, and crowded his body into the narrow bunk each night for a few hours of relief from the daily torment.
Without bidding, the ending of Lost Horizon raced into my mind. Conway had fled Shangri-La with a small group but realized that he had lost his chance at immortality. He was desperate to return but the question lingered: Had the entire scene at the lamasery been real, or was it just a figment of his overstressed imagination? While there he’d fallen in love with Lo-Tsen, a beautiful young harpsichordist. She’d departed Shangri-La with his group and soon accompanied him to a doctor, because Conway had become ill. Characters in the book who wished to confirm Conway’s fantastic story about Shangri-La, and the near-immortality it conferred, later found this Chinese doctor, who revealed, in broken English, that the woman was not young and beautiful but old—the most old of anyone he’d ever seen.
These words served as the confirmation: Once she’d left Shangri La, Lo-Tsen had quickly reverted to her true age, well beyond that of any other humans. The High Lama had told the truth: Shangri-La was real.
The revelations of that February morning served as my own confirmation. Dad hadn’t lied. Underneath his psychotic thoughts and beliefs lay the reality of what was transpiring at Byberry. The stigma of mental illness was far from a small, tangential issue. Instead, it was life or death.
My project to understand this concept, I now realized, would go far deeper than I’d ever imagined.
*
Ten years earlier, with the multicenter treatment grant now awarded, I found myself at another interminable meeting in Washington, DC, with a large group of psychologists and psychiatrists from the six selected research centers around the country. Our goal was to plan and design a definitive treatment trial. A core requirement was that each team must travel to the National Institute of Mental Health (NIMH) every month for planning sessions. These interdisciplinary meetings served as a defining moment of my early career.
But could those meetings ever drag on.
One of the NIMH scientists supervising the investigation was a brilliant developmental psychologist, John Richters. John was a bit different: He wandered the perimeter of the tables for much of the meeting time, making bird calls and warbles during any lull in the proceedings. Sitting still did not play to his strengths, as his subsequent diagnosis of adult ADHD made clear. Yet when there was a conceptual point to be made about research design or measurement strategies, his laser focus and incisive comments cut to the bone.
In spare moments outside the meeting room he told me about his background and upbringing, dominated by harsh, abusive discipline. “Think of The Great Santini,” he told me, describing his military father. John stole cars at an early age and later spent time at juvenile detention facilities. His life went almost permanently off track, but well after the age when most young adults had graduated from college—without even a ninth-grade education behind him—he finally embarked upon higher education. He earned top honors and went on to become a distinguished grad student. Ever since, he’d won awards for his incisive analyses of developmental issues in child mental health. Feisty, demanding, obstreperous, and wickedly funny, John was a trip.
The meetings sometimes went on well into the night, as arguments raged about recruitment strategies for families, the correct assessment tools, the value of medication versus psychological treatments, ensuring that interventions are delivered with an eye to high quality and fidelity, and tailoring treatments to each child while maintaining the integrity of a randomized, experimental trial. The stakes were high, as the investigation was—and still is—the largest treatment study for children with mental health problems in the history of NIMH.
When things got deadly in the meeting room, John and I would sneak out to the hotel corridors. Every time we spoke t
he ideas ignited like a brush fire, sparks jumping from branch to branch. One afternoon he asked me about my background. Bleary-eyed, still on Pacific time, and wondering whether we should perhaps return to the meeting room in case a crucial vote might be coming up, I took the plunge. I brought up Dad, Pasadena, Russell and Einstein, hospitalizations, schizophrenia versus bipolar disorder, and the talks that had begun during my first spring break from college. I went quickly but left nothing out.
As I continued talking John’s eyes got big. Soon he was nodding, gesturing, and leaning in toward me with each phrase. At one point he stepped back, lifted his hands up high, and then reached forward to grab me by the shoulders.
“Steve, do you know what you’re telling me?” he half-yelled, his voice super-charged. “Don’t you understand the importance of your dad’s story?” He was six inches from my face. “Write about it and talk about it!”
I nodded back. This was my first public commitment, even if my public was at that point just one extremely animated individual.
Flying home on yet another transcontinental flight, I began to gather my thoughts. In spare moments the first outlines emerged. Over the following years I began to speak publicly about Dad, as well as our family and myself, having finally overcome the hesitancy, secrecy, and shame that had been the core curriculum of my childhood. In 2002 I published a monograph emphasizing the clinical reality of bipolar disorder through the example of Dad’s life.
Analyzing our family’s history impressed upon me, more than ever, the horrendous concept of stigma. Although I hadn’t admitted it before, but the very term is noxious. When speaking it aloud, you can’t help but notice its sounds—the occlusive “t” and “g” consonants—that spit out from your throat and then lodge there. Its meanings are equally severe, as the individuals in the degraded group are branded as outcasts: shameful, offensive, and less than fully human. Underneath the toxic cloud of stigma lie negation, repression, and banishment. For many stigmatized people, the accompanying isolation is tantamount to solitary confinement. There may be no sensation worse than being excluded from the mainstream, lacking any community or social support.
By the late 1940s, with the demise of Fascism, many social scientists believed that only a subgroup of people—those who’d been subject to punitive parenting practices—became stigmatizers or bigots. In fact, a major book on this topic, The Authoritarian Personality, was written by Berkeley psychologists and sociologists of the era. Over the intervening years, however, the core premise has changed radically. Prejudice and stigma are now viewed as the products of everyday social cognition.
In other words, any interaction with a group yields a flood of social information, so that one must quickly categorize fellow humans—as young versus old, sharp versus dull, tall versus short—to reduce the torrent of data and make sense of the social world. The key categorization, however, is deciding who lies within one’s ingroup (kin and close contacts) versus the outgroup of potentially threatening strangers. Initial stereotypes of “difference” often become infused with negativity, morphing into prejudice and discrimination, when fundamental rights are denied to outgroup members.
Thus, stigma is not limited to a small group of prejudiced individuals but instead is nearly universal, especially against subgroups branded as threatening and irrational, like people with mental illness. Indeed, stigma against people with mental disorders appears in every culture and society ever studied. Overcoming stigma, I now understood, would be an enormous undertaking, encompassing a fundamental change in attitude and empathy across the human race.
*
In 1994, I obtained a sabbatical from Berkeley. No chance for travel to exotic corners of the world, as Jeffrey was in second grade and I needed the time to devote to my research. But the time off from teaching allowed me to focus on my projects and make occasional trips to Columbus. Indeed, by now, Dad had sunk deeper into the Parkinsonian condition that robbed his physical abilities and limited his cognitive functions.
I flew home in early September. As always, Ohio seemed worlds away from California. Our back yard was beautiful, the late summer’s warmth permeating the soft-blue sky, full of cirrus clouds. Geese forming huge chevron formations pointed south. Dad and I sat at the picnic table under the shade of the now-mature trees, a far cry from the frail sticks that welcomed us when we’d moved in over three decades before, only to have him disappear for nearly an entire year.
He started off by stating quietly that it was September 6, the precise date when, 58 years earlier, he had jumped from the porch roof back in Pasadena. I was taken aback, for once having lost track of my internal calendar. Nearly a quarter century after our first talk, his words of recollection transported me once again into his and our family’s history.
I flew back in early January. Dazzling white, iced-over snow covered the ground, with temperatures far below zero. Mom and I took Dad out for lunch in German Village, a restored part of Columbus with red-brick stores, cobblestone streets, and homes from a century earlier now brought back to life. While Mom found a parking space, I helped Dad out of the car and guided him up the short flight of steps to the restaurant. Paralyzed momentarily, he stopped halfway, his body as frozen as the arctic air. As he looked over at me, resignation and despair showed through his stiff face. We backed down.
“I never dreamed that it would come to this,” he said softly, incredulous. “Look at me, stuck like that. Who’d have ever thought I’d end up like this?” He wasn’t so much feeling sorry for himself as expressing disbelief.
The following afternoon I initiated a talk in his study. I’d been mentally preparing for some time. This might be my only chance. I closed the sliding door behind us. The golden-toned wood and the deep-hued book covers contrasted sharply with the bare branches beyond the windows, covered with ice.
How many times had we sat here since my freshman year of college? When I was home during spring break, the pink and white blossoms in the yard dazzled during their fleeting existence. For summer talks, the leaves and lawn were a majestic green. We hardly met up in the autumn: I couldn’t often get away when fall term was in session. On Christmas holidays, the outside world was drained of color while our connection strengthened inside the warm room.
My agenda was clear: I needed Dad’s permission to take his story to another level. My conversation with John Richters the year before had solidified my resolve. But corralling Dad’s attention was no easy task.
“I’ve got something to ask,” I said from the small sofa, at the opposite end of the room from his desk, with all its distractions. Yet to my amazement, he was trying to stand up. With agonizing slowness he lurched over to his file cabinet, his fingers fumbling while he tried to open the drawer. After an age he peered inside the jumble of course syllabi and other materials. Hands tremulous, he sifted through the folders and grabbed the one he wanted. He walked stiffly back in my direction and held it out toward me.
As I opened it I realized right away that this was his summation. In his typed pages, written in the third person about himself, he referred once again to Goffman, who had contended that institutionalization involved a complete loss of identity:
One is penitent, an “invalidated” human being. What formerly took a morning out of his day, now takes up to 5 months of his life. What formerly was momentary humiliation (of the protracted strapping that inevitably ensued), now takes months. What formerly was the first stage of the punishment ritual in which guilt was established … is now called a psychiatric examination or “degradation ceremonial,” … wherein he is bereft of his civil liberties and, in effect, imprisoned in a total institution known as a mental hospital.
Regarding the arc of his life, I now fully understood, Dad viewed punishment and stigma as the central themes.
Yet I couldn’t allow myself to become distracted. I thanked him but repeated that we needed to talk. After he’d eased his body back into a sitting position, I looked straight at him. “I’ve been thinking a lot about
our talks over the years,” I explained. “I would like you to consider something.”
But was he really focusing on my words? His half-paralyzed facial muscles revealed nothing. I went on to say that I’d like to write about his life, using what we’d been discussing and the journal entries he’d shown me as a guide. I told him that I believed his life had lessons for many others.
“So, Dad,” I asked as incisively as I could, “may I write about you and your life?”
He looked up. At first immobile, he slowly began to nod assent.
But had he really heard? I repeated the question. This time his answer was definitive. “By all means, son,” he replied, faintly but directly, back to the formal diction he used for emphasis. For everything on the topic I’ve written ever since, Dad is my co-author.
It was the last talk we ever had in his study.
*
Somehow Mom got Dad to Palm Springs in March. I was to arrive the following week, but one evening early in their stay, believing that a night light in their bedroom was aflame, he threw a cup of water in its direction, shorting it out and creating a mass of smoke and sparks. Things were dire. Mom cut the trip short.
Neurological assessments back in Columbus revealed progression of the illness, diagnosed as Parkinson’s with accompanying Lewy-body dementia. Parkinson’s starts with depleted dopamine in the specific brain pathway linked to voluntary motor movements, but over time, abnormal protein deposits inside key neurons can spread to higher regions of the brain, producing dementia. By late May, Dad could barely make it out of bed to use the bathroom. There was no way that he could stay home. Not wanting to panic him with an ambulance, Mom arranged for an old friend and her brother, Buddy, to come to the house, lift him down the steps, and drive him to the hospital.
Another Kind of Madness Page 23
