Another Kind of Madness

by Stephen Hinshaw

Across history and across cultures three universal signs of social threat exist. First, signals of parasites or disease, such as disheveled appearance, “sick” behaviors, or excessive grooming, trigger disgust and avoidance. Second, evidence of someone’s poor cooperation—in the form of unpredictability, extremely low social status, or behavior that threatens to cheat others—elicits anger as well as banishment of the offender. Third, marked physical or cultural difference, including different skin color, custom, or religious belief, any of which might portend takeover by a rival coalition, can motivate hatred, exploitation, and even extermination.

  The shunning of individuals displaying these signs is sufficiently universal to invoke the idea of deep, naturally selected roots of social exclusion. Indeed, evidence for such patterns permeates human history. Even more, members of other species shun their “peers” who reveal sick or overly deviant behavioral displays.

  Lacking any background in evolution, the sociologist Goffman showed incredible prescience in his 1963 book on stigma. He posited that “abominations of the body,” “blemishes of character,” and “tribal” differences were the universal triggers for stigmatization. His intuitions map almost perfectly onto the contagion, social threat, and coalitional modules of the evolutionary approach.

  As for mental illness, the first two tendencies—wariness of contagion or contamination and exclusion of people with unpredictable behavior—are especially salient. Individuals with chronic mental illness may seem disease ridden, and irrational behavior may give rise to the view that the person is an untrustworthy social partner. On the other hand, “tribal” rejection linked to appearance and cultural difference would appear to be linked far more specifically with racism or ethnic hatred.

  Evolutionary models can be reductionistic, even fatalistic: Think of Social Darwinism or the eugenics movement of the early twentieth century. These models are also difficult to prove experimentally. Still, the implications are chilling, as stigma-related responses to individuals with mental illness might well be automatic and unconscious. Even so, although deeply ingrained forms of stigma may be hard to overcome, they are not inevitable, because humans can recognize and harness such responses, especially if the fundamental humanity of those individuals experiencing mental turmoil is emphasized. Fostering humanization may be the single most important weapon in the fight against stigma.

  *

  Some years back I began seeing a therapist, partly to get beyond my periodic plunges. I talked about my history of holding things in—and my wariness of feelings. Saying good-bye to someone has always felt as though I’d lose contact forever. Even a hint of sadness might trigger a slide toward despair. Sensing a less-than-perfect effort in myself would spark an explosion of self-hatred. But when feelings are actually communicated, as I gradually learned, they might not be lethal. Over time, I began to get back on the planet of reality rather than the fantasy asteroid where superhuman efforts and the suppression of feelings seemed the only way to survive.

  When I moved to Berkeley 25 years ago, I saw a different therapist for a time, one who used formal assessments to help guide treatment. Early on, he asked me to complete a widely used personality scale, the Minnesota Multiphasic Personality Inventory (MMPI). Despite my self-torture in college and beyond, my mini-swings of mood, the rage that lingers just beneath the surface, and the self-doubt that co-exists in tandem with my confidence, the overall scores from my profile were squarely in the normal range. Yet there was one index with a subtle elevation, the MMPI Paranoia scale. I was sure there’d been a mistake, as I’m usually trusting to a fault—the antithesis of paranoia. But a smaller subscale exists within Paranoia, called Poignancy. It was here that my score was particularly high.

  People who provide the answers I did have an intense and emotion-laden approach to the world, believing that hidden meanings underlie each endeavor and interaction. They often feel misunderstood and, in fact, quite alone. It’s true: I infuse everything in my life with emotion and a search for essential meaning. Despite the regimented approach to life I developed as a boy, I’ve been on the lookout for underlying currents for as long as I can remember, a hidden passageway to enlightenment during my often solo efforts to figure things out. Unbidden, memories flood my mind each day, placing me squarely back in the key transitions and battles of my earlier years. I may not show it outwardly, but my background noise consists of a deep intensity, a pale image of Dad’s far sharper swings but laden with sharp emotion all the same.

  Still, over the years I’ve learned to relish life’s small but crucial pleasures: that song or symphony on the car radio so wondrous I keep driving just to hear it all the way through; the sound of a three-point shot hitting nothing but net as it swooshes through the hoop; the sight of Kelly, beautifully bringing out the best in everyone around her. Somehow, I’ve moved beyond the lockdown.

  *

  In 2010 I was contacted by a man named Philippe Fontilea, living in Southern California. He was convinced, he said, that he’d found a way to conquer the stigma of mental illness and wanted experts to help his effort. Phil’s background was intriguing. He’d been a Broadway dancer, investor, rock climber, and more recently a rock-climbing instructor. He’d come to the realization that fighting stigma would need to begin early. The way to go about it, he believed, was to form high school clubs—without need for mental health professionals—in which kids could express their natural empathy and activism by discussing ways to counter discrimination and prejudice. Without rigid, adult-directed scripts, the students would devise ways to cross barriers, discuss “difference,” and draw upon their interests and motivations.

  The idea was utterly simple and utterly profound. He called the program Let’s Erase the Stigma, LETS for short. Phil put together a summit of several hundred LA-area high schoolers, who gathered raucously amid rap music and break dancing in the spring of 2011 to learn about the LETS model. Once back at their schools, they established clubs the following fall. So long as a teacher agreed to serve as the club’s advisor, weekly meetings were held. Guidebooks for the club activities evolved. A student recorded the club’s activities each week, to help understand the active ingredients.

  Our research team at Berkeley provided an evaluation, discovering that after a semester of club participation, members showed some gains in their knowledge of mental health. Revealing greater improvement, though, were their attitudes and their desire for greater contact, as well as their intentions to reduce stigma on a daily basis.

  Other stigma reduction programs embrace the goal of teaching factual information about mental illness in high school health classes. Through this kind of intervention, student knowledge definitely improves. But at the same time attitudes tend to get worse and the desire for social distance may actually increase. In other words, simply knowing the facts about mental illness tends to reinforce all the wrong ideas and deeply held stereotypes. What’s needed instead are contact, empathy, and action, in order to gain understanding of the human side of mental illness. When young people have the opportunity to become active in the service of reducing barriers among people, unleashing their desire to connect, there’s real hope.

  In April of 2012 I received an unexpected phone call from Glenn Close, by then an ardent activist on behalf of stigma reduction as a result of her family’s intensive experiences with mental disorder. She asked me to serve on her scientific board of advisors. During our conversation, I invited her to LA to address the second LETS summit, starting the formation of connections. When Phil relocated overseas in 2014, Glenn’s anti-stigma organization, Bring Change 2 Mind (BC2M), took on the oversight of LETS clubs. Our research group is now in the midst of a random-assignment trial of the impact of the clubs in multiple high schools. The hope is that LETS BC2M will thrive.

  In future decades, might it no longer be shameful to admit a history of mental disorder or seek intervention that could reduce symptoms and impairments? The stakes have never been higher.

  *

 
; Not long after Kelly and I were married, Sally was hit by a car while taking a long, fast, summer bike ride back in Columbus. She plunged face-first through a closed window, almost succumbing to blood loss during the frantic rush to the hospital in the emergency squad. It was touch and go. After several surgeries she recovered.

  She now works at OSU Medical Center and other hospitals in patient education and physician training. Completely dedicated and committed, she knows more about medicine than most everyone with whom she works, having become a linchpin in the growing movement to improve the knowledge base and clinical skills of health professionals. Mom’s caretaker for many years while the debilitating rheumatoid arthritis progressed, Sally has stayed engaged in progressive political causes far more than I ever have, and she continues to ensure that her life has purpose and meaning.

  To a fault, Sally and I are alike in our styles: impatient, routine-based, and intense. She’s less forgiving of herself than I am of myself, and I wish her more flexibility and self-acceptance. We remain ultra-close, continuing to speak—metaphorically, at least—the same private language we shared all those years ago.

  A few springs ago she and I planned that I would detour through Columbus on the way back from a trip to Washington, DC, to surprise Mom on her eighty-fourth birthday. I arrived on the small commuter jet from Dulles on a warm night in late May, booked a rental car, and drove the freeways back home. Mom couldn’t believe her eyes.

  The next evening Sally and I took her out to dinner, and Mom beamed throughout the entire birthday meal. With a tender look in her eye she exclaimed: “What a life you’ve had, Steve: your accomplishments, the places you’ve been, your family. You’re the best son a mother could ever have.” Two days later we drove out past Grandmother’s old house in Bexley, reminiscing about our family’s times inside its walls.

  But on my birthday in December of 2014, Sally called to say that Mom had awakened in horrible pain, with fiery currents radiating down her back. Within three days she was in the hospital. Two evenings later I flew all night to Columbus, where Sally and I spent Sunday morning holding Mom’s hands as she slowly stopped breathing in the intensive care unit. She was a few months short of her ninetieth birthday.

  A neurologist colleague and friend in Berkeley, Bob Knight, had given me a heads-up before my flight: Mom had undoubtedly experienced an odontoid flare, he said, in which the chronic rheumatoid process triggers a sudden inflammation of the odontoid bone, located within the very top cervical vertebrae, pressuring the spinal cord. The two symptoms related to such a flare are fire-like pain shooting down the spine and death within a week, because the brain-stem-related circuits that regulate breathing shut down.

  Perhaps her sudden demise was a blessing, given the huge pain and disability she’d have undoubtedly faced from the continuing arthritis if she’d aged into her nineties. Yet I miss her terribly. One source of solace is that, as with Dad, we’d held the needed discussions when she was alive. Not much was left on the table.

  I’ve been to Columbus as much as possible ever since, to work out the details of Mom’s estate and connect more deeply with Sally about our family’s plight. Over the dark Imperial stouts that Sally cherishes, some of my learning has been painful. While I basked in the glow of Dad’s wisdom and generosity when he was well—and received his long-held secrets about episodes of madness—she experienced a father who never showed the true pride in her he should have. Once, back in the 1970s, when she was home and took a message for Dad from an old colleague, the caller paused and said that he didn’t know Virgil had a daughter. No wonder Sally had identified so strongly with Mom, who always supported her. I’d been favored for no real reason other than being male.

  I only wish that, had the shame and internalized stigma about both mental illness and abuse been less cemented inside Dad, he could have better accepted himself and let both Mom and Sally in on his vulnerabilities. It must be hard for Sally to hear the kind of tribute to Dad I’m writing, when she never had the same spark of interest from him. Still, she knows how much I’ve always loved her, and her life is all about the empowerment of others, particularly patients with a range of physical and mental disorders. So many years after the shroud of silence enveloped us when we were young, we’re both working to remove it, each in our own way.

  How much more open am I? With our boys—Jeff, making it in the world of research and finance; Kelly’s talented and musical son, John, learning the trade of gem-cutting overseas; Evan, entering his teenage years—can we hold to a different standard than what I’d experienced? Change is difficult: I’d still rather believe that, through some kind of magic, tough issues will simply resolve themselves without discussion. Silence begets silence; shame begets shame. Still, if Mom—who lived her entire life inside the deep shadow of stigma—could finally experience a sea change in her ability to open up, why can’t I?

  When Jeff was a pre-teen I took a risk one day and talked with him about his grandpa, who’d died the year before. After discussing philosophy and what philosophers do, I told him to imagine a time when he’d been really excited—and then to imagine being ten times more excited than that. The same for feeling sad: What would it feel like to be ten times sadder? What Grandpa experienced, I said, were moods that were really strong. It would be several more years before I learned of the work of Beardslee, including his family therapy model that encourages parents to speak to their children in understandable language about the realities surrounding the family. But I sensed I had to say something.

  Fast in everything he does and with the benefit—and curse—of intensive social media, 13-year-old Evan is quick to judge as he, like everyone else his age, solidifies crucial attitudes about a variety of social groups. Open dialogue will be essential for him and every other teen. Might he come of age in a world filled with more openness and acceptance than now? It’s today’s youth who will make the key difference from here on out.

  *

  Not long after we began our relationship and she’d heard my family’s story, Kelly told me that it must have been overwhelming to shoulder the burden of learning about Dad’s past once I’d started college. I quickly replied that there was no other way: I simply had to learn the truth. A few years ago, my therapist raised a similar point, commenting that my discussions with Dad were one-sided, as he never asked for my reaction or checked in about how I might understand his disclosures. I countered that hearing of Dad’s experiences in no way compared to the devastation he’d gone through. My price was small indeed.

  With time, however, I’ve begun to accept the wisdom of their contentions. Without any outlet for the knowledge I was gaining and without any way to express the gnawing doubts I held about my own sanity, I experienced a war inside my mind about Dad’s words and images during college and beyond, especially at night. I’m still shocked over my ability to have tortured myself for years on end. I walked the precipice for far too long. Finally—at the eleventh hour—I learned to trust in my ability to let go and let myself truly rest when the day’s work was finished.

  Still, when I think of Dad, what I remember most are those talks we had, the times in his quiet study—or even in the car with perhaps half an hour before we’d reach the airport—when the outside world disappeared. His words infused me with unexpected scenes of life inside hospitals, with knowledge of the California family I gradually came to know, and with his quest to understand the roots of the ultimate philosophical questions and his own plight. They forged my goal of engaging with mental health and battling stigma.

  Only late in the game, during Dad’s final years and then after his passing, did I finally understand another purpose of his. Without ever asking me directly, he was, I’m now sure, encouraging me to convey his story to the world. During our last talk in his study on that arctic January afternoon, he made the final handoff of his crucial message—linking his hospitalizations to his childhood punishments—while I secured his permission to let the world know about his life.

&n
bsp; Over the past years, in fact, I’ve become his scribe, ghostwriter, and interpreter. It took a while to gain momentum but I’ve kept at it. My life has never been richer or more fulfilling. In what I consider to be the key challenge of my life, I hope to integrate science and personal narrative more than ever.

  In the end, I hope that Dad might be pleased with what I’ve tried to say. I hope that telling his story, conveying our family’s plight, and disclosing my own journey might yet help to turn the tide.

  Epilogue

  The winter sky quickly darkened as the overnight jet ascended toward London. In January 2009, the day before the inauguration of Barack Obama, I was on my way to give a keynote talk at the fourth International Stigma Conference on Mental Illness, held at the Royal College of Physicians, King’s College. When the invitation had arrived six months earlier, I stared. Was such a conference even possible, with people from around the world converging to discuss shame and stigma? Given our family’s history, it seemed unthinkable.

  Before my talk, which was to be an account of my personal and family journey, I toured the exhibition on London’s Royal Bethlehem, later contracted to Bedlam, the first permanent mental hospital in Western Europe, with an 800-year history. During the Enlightenment, wealthy citizens paid admission to watch the raving patients there, as though touring a zoo. Accounts reveal unspeakable horrors that were daily occurrences. Though I knew the history, the diorama floored me.

  Beyond the troubling exhibit, the lecture hall was modern, its amphitheater-style seats packed with five hundred attendees. After a number of presentations, I heard my name announced and strode to the podium as the lights muted. How still it seemed throughout the auditorium. How diverse the audience members looked, representing over 50 nations. With large images of my family projected behind me on the huge screen, I took a breath and began.

  As I finished 40 minutes later, the room went silent. A second ticked by, then two. Maybe such a distinguished group hadn’t wanted to hear such a message. Unsure of what to do, I made a move to step down when the explosion began, applause like a burst of gunfire, ascending in a crackling wave, palms pounding into palms. The ovation didn’t recede for some time. Maybe things really were changing.