I was embarrassed by my reactions as a teenager to people with emotional disabilities. I could feel an initial distancing, a type of repugnance that pushed me back—that somehow shut me down. I became quieter—avoiding, ignoring, or turning away from the individual. I didn’t understand this reaction, but it troubled me. What was I so afraid of? What jammed my normal way of being? While I first noticed this reaction with people whose emotions seemed off, who yelled too loud, or who were socially awkward, I found the same thing happened when I encountered people with physical disabilities. It troubled me—an embarrassment of sorts. And nothing else in my adolescent experiences created this effect.

There was a man in my hometown, Richie, in his late 20s or early 30s, who was intellectually disabled and mentally ill. He often mumbled to himself, stared off into space, or tapped his eyebrows with the tips of his fingers. He was slightly disfigured, with a very large nose, and walked with unusual speed. He was made fun of by students, shunned by parents, and hidden from by children. Yet Richie was a fan of all the high school sports teams. He always seemed unfettered by the antics of others, and he said hello and waved to you if you made eye contact. His constant presence at the high school football, basketball, wrestling, and baseball events brought on ridicule, unflattering mimicking, and derogatory statements: “Go home, idiot!” “Loser!” The cruel mimicry and constant taunts of teenagers seemed to follow him everywhere. On occasion, a parent or teacher or coach would yell, “knock it off,” but it never really got better. Richie would show up, yell for his team: “Come on, you can do it, you can do it!” He also had a slight lisp and occasionally stuttered, which made even his cheering into something that caused offensive remarks or reactions. When I saw Richie at these events, I wondered why he was there. Why would he put himself into such a vulnerable and exposed circumstance? I felt bad for him, but I also wished he wouldn’t make himself a target. Why not stay home? Or be quiet? Or sit somewhere else than the middle of the bleachers? In other words: why don’t you make my life easier by not being you?

As Richie made his presence known, people either shut down, like me, or acted out, like those mocking him. His presence caused people to react. Even the parents and teachers and coaches trying to keep the peace were affected. People were not neutral around him. What I didn’t notice was any sweetness toward him. No one said hello, no one smiled, no one shook his hand. I noticed people’s reactions, but I never did anything sweet or kind toward him, either.

Richie was ubiquitous. It didn’t matter if we were dropping my sister off for dance lessons or getting Friday-night pizza or food shopping. Richie was there, and he always seemed to be in a good mood—and always walking off in a hurry. On occasion, he tried to start a conversation with a teenage girl—but this almost always ended with the young girl turning away without saying anything, or leaving after a polite, but curt, hello. A few of these encounters ended with the girls saying awful things to him about his appearance or speech, but never once did I see a mean or negative reaction from him. In fact, the only thing I ever heard Richie reply to anything ever said to him was: “That’s okay, that’s okay.” There wasn’t a mean bone in his body.

Toward the end of high school, I took a job at an ice cream parlor in town and in fairly short order became the manager—helping to make the ice cream, opening up, closing up, and cleaning up. I took some pride in managing it, and the owner and I got along very well. Over time he gave me more responsibilities and pay—and of course there was the added bonus that I could have a helping of anything I wanted at the end of my shift. My friends and fellow students would come in. It was a perfect way to make some money, be around my friends, and eat some terrific ice cream.

One day Richie came in and ordered a cone of rum raisin. I served it up for him, and while I was holding the cone out for him to take, he began the excruciating process of counting out the thirty cents in pennies, nickels, and a dime. He was short by three cents and I told him not to worry about it. A customer saw our exchange and told Richie to put his money away and that the cone was a treat, on him. This was the first act of kindness I’d seen directed at Richie. As the man handed me the money, Richie froze, not knowing what to say or do—genuinely shocked. While I held out the cone, Richie gathered up his change on the counter and stuffed it back in his pocket. His moistened eyes darted back and forth between the customer and me. He took the cone from my hand and vigorously shook his head—a kind of humbled, animated thank you to both of us. In what seemed like one synchronized move he started eating the ice cream, quickly walked toward the door, and muttered: “That’s okay, that’s okay.” Richie had no idea how to receive kindness.

After that, Richie showed up every day. It was as though kindness and good fortune were now linked to the ice cream parlor: he would show up soon after I opened, buy a rum raisin ice cream, and stay long after he was done. After a while the owner realized this, thought it was bad for business, and told me I had to tell Richie he couldn’t stay once he finished his ice cream. I did this, and explained to Richie that the seats were for people eating their ice cream and once done he would have to go so someone else could sit. Richie understood, but when he left he stood right outside the door. The owner was not happy about this new turn of events and told me he was going to involve the police. For several days we discussed alternate means of handling the situation, and somewhere along the way I recommended hiring Richie to help clean up. This way he could be connected to the ice cream parlor, I would have help in the evenings, and we could tell him that part of the deal was that he wouldn’t hang around during the day. The owner rejected this idea out of hand, and it was clear the police would soon be involved.

Then the unimaginable happened. Out of the blue the owner’s wife, only thirty-eight years old, died of a brain aneurism, and we closed the store for a week. Everyone in town knew her and the funeral parlor was packed every night. On the last night, Richie arrived and stood in the back, holding rosaries. When the owner thanked him for coming Richie’s eyes darted around. “That’s okay, that’s okay,” was, again, all he could say.

The owner changed his mind and hired Richie, whose efforts cut the time it usually took me to close the shop in half. We fell into a routine of cleaning the ice cream machine, wiping the soda fountain down, cleaning all the dishes, then putting the chairs on top of the tables and mopping the floor. Richie stayed away during the day—yet faithfully showed up at night. As the floor was drying, we would sit and eat a well-deserved ice cream cone. I’d usually have chocolate chip, and Richie loyally chose his rum raisin.

Then one day Richie didn’t show. Then again—and again. There were rumors about what happened: he’d gotten hit by a car walking at night; he was hospitalized in an institution; he’d run away. I always wondered what happened to him. Although I tried to find out, I never saw him again. Soon, I left the ice cream parlor for college, after which I enrolled in graduate school—where this book begins.

So, I suppose, this book in many ways is inspired by Richie. He was the first person in my direct experience who struggled with intellectual and psychiatric disabilities. His innocence and enthusiasm for life, willingness to learn, and his desire to form relationships opened my eyes and heart to people I had closed myself off from. What I learned from him and from the people I have worked with is that, in spite of enormous intellectual and psychiatric disabilities, these individuals are not very different from you and me. They crave love; need affection, compassion, and kindness; get hurt when they feel left out; are in need of guidance; want meaningful relationships; get angry when they are betrayed or can’t have their needs met; and are generally as confused and uncertain about their course in life as the rest of us.

Writing about my experiences with them required using a style of writing—creative nonfiction—that would allow their stories to be told without invading their privacy. Because I am trained as both a psychologist and writer, I serve at the discretion of these two professions. The first is devoted to the welfare and care of others and to treatment of their condition that respects their humanity and their privacy. Toward this end, though this book is based upon actual events, some of the characters and incidents portrayed herein are fictitious. This includes the name and setting of the group home, Walden House. Readers should not assume that any similarity to the name, character, or history of any person, living or dead, or to any actual event is intentional. Individual characteristics, locations, and other identifying details about the characters portrayed and their circumstances have been veiled and shrouded according to the American Psychological Association’s guidelines for psychologists writing about their clinical case studies. When writing about people I’ve worked with, I have followed the APA’s directives in each and every instance.

But I also have an allegiance to my profession as a nonfiction writer that requires a conscientious attention to detail. To that end, historical facts concerning Willowbrook, including specific names, events, and details are exact and not veiled. They are reported and validated through verified sources.

This story needed to be told while paying homage to both disciplines. The path I have chosen to satisfy these conditions is to use distortions when necessary to disguise an individual, but to always present core elements of personality or condition to establish the path of the character. In other instances, I have kept the individual intact as completely as possible, but have transplanted them from one location or point of time to another so as to preserve their distinctiveness while camouflaging their identity. The result is that my own story is very similar to, but not exactly the same as, what you are about to read. These changes are necessary for me to protect these individuals and yet safeguard the goal of telling a story about their lives while preserving the emotional truth of my experiences with them.

Had I simply identified and wrote about the individuals in the group home or my practice without sufficiently masking them and their location (some of them, I am happy to say, are alive and doing quite well), I would be in breach of the APA’s doctrine on the use of case study. Yet if I used fully fictionalized characters, this would no longer be an account of their experiences.

Truman Capote has been credited with creating the nonfiction novel by blending the facts of the situation with novelized circumstances in his classic In Cold Blood. This was a wonderful addition to the literary world, but I do not have the same opportunity as Mr. Capote. The details and identities of his main characters, Richard Hickock and Perry Smith, were public and utilized in the book. In American Snake Pit, the main characters (excluding myself, of course) are people whose identities must remain veiled.

Yet exposure is my goal. Derogatory terms such as idiot, moron, imbecile, and retard (once used as actual medical and psychological categories for people with intellectual disabilities) have always occupied a marginalized place in humanity. Over the past thirty-five years I have engaged in the training, consultation and writing of people with intellectual disabilities. These early experiences led to the development of the first book on psychotherapy published by the APA, which was used internationally as a guide for treatment. This is not to diminish the great strides made by the use of medication and behavior management techniques—these have made wonderful improvements in the lives of individuals who have been marginalized—but it does serve to allow meaningful interaction between individuals with severe cognitive and psychiatric disabilities which, as researchers have been able to demonstrate, make lasting and important therapeutic changes in individuals’ lives.

I now teach positive psychology at Columbia University in New York City and work for Marty Seligman, father of positive psychology at the University of Pennsylvania in the Master of Applied Positive Psychology program. In these capacities, I work with students to understand what is possible, what allows for hope, and what makes people flourish. My goal in this book has been the same as my other, more academic writings: to increase awareness and understanding of the needs of these individuals by highlighting our similarities rather than differences—and to learn from their extraordinary examples of resilience, hope, grit, compassion and triumph of the human spirit. They are my teachers, exemplars of human potential. They have inspired me deeply, and sharing their courage and transformation with you is my reason for writing this book.

Thank you, Richie, for having the courage to be you, and for helping me become a better person.

She emerged from behind the dresser naked, destroying everything in her path, her body marked with jagged keloid scars and burns, a geography of abuse by those who came before me.

Like me, they had also claimed they were there to help.

Sophia used her bare hands and feet to demolish a dresser drawer by kicking and pushing down the sides. It felt like watching an animal dig a shelter to live in. She grunted, panted, ripped apart the wood, and shredded clothes that had been in the drawers. Littered with debris, the room appeared as if a grenade had gone off. One hadn’t, but a detonation was coming.

It startled her when I opened the door. She growled and turned away. As I moved into the room, I called to her.

“Sophia, it’s okay. Do you remember me?”

Her wiry body seemed an odd combination of raw power and poor muscle tone. She bent toward the dresser and reached down to grab it, the whole thing, with her right hand on the bottom and her left hand holding the top frame where the first two drawers had been. She lifted the five-drawer dresser. I could see the strain in her muscles. Her body looked as if someone had placed iron cables inside pastry dough. She turned toward me, her front covered by self-inflicted wounds: cuts, bruises, punctures, and burns. The largest scar—a discolored, vulgar slash—crossed her heart between her scarred breasts, which were too large for her five-foot, one-hundred-pound frame. They hung down in front of her like distended water balloons. I took in a sharp breath that made a slight sucking noise, a startle-response to the grotesque.

Her strength was a marvel to witness. She let out a long growl and pulled the dresser back toward her, and up over her head. The remaining drawers came out of their tracks, hitting her. The bottom drawer rested on the inside of her right arm, and she rotated toward me, our eyes connecting. I’d seen this look with other patients. A psychotic episode was well underway, and her eyes were engorged and bloodshot. Her black curly hair provided a frame to contain the rage in her eyes. Her breathing was shallow, but harsh, and I half expected to see steam come out her nostrils. She held the dresser above her head and bent her knees. With one long push and grunt, she heaved it toward me.

As it came at me in slow motion, my academic life felt more irrelevant than ever. Every syllabus from every psychology course I’d taken flashed into my brain to no avail. No class had covered this situation. I knew what to do if someone was uncooperative while taking an IQ test; I could handle a child who didn’t want to talk during a therapy session; I could mediate an argument that broke out between two inpatients. But no course syllabus included “How to Subdue a Violent Naked Woman.”

I wasn’t fully inside the room, so protecting myself was the easy part. I stepped back and pulled the door within an inch of its frame. The dresser landed with a dull cracking sound, facedown, behind the door, and I watched Sophia for a moment through the opening. Eventually, I pushed the door and I could feel the weight of the dresser against it. As I stepped inside the room, I could see that Sophia had already destroyed the clothes hanging in the wall closet behind me.

“Sophia, it’s okay. You’re safe here. This is your home,” I said, as clearly as possible without screaming.

Sophia’s breathing became rapid, her eyes darted, and she took short, halting steps like a caged animal. I couldn’t imagine what she was planning.

She turned away from me, facing the window. I felt glad the institute replaced all the windows with plexiglass—this was exactly why. A decorative railing outside provided triple reinforcement to prevent any possibility of someone falling or jumping out. Sophia faced the window and for a split second calmed herself. I’d also seen this with others—the time during the rage in which everything stops momentarily before escalating beyond comprehension.

She stood about four feet from the window and made a twisting motion with her body, hurling her fist, like a torpedo, into the plexiglass. It cracked at the point of impact, and Sophia’s fist, wrist, and elbow went through not one, but both panes. Her bleeding was immediate and profuse.

I instinctively ran toward her—exactly the wrong thing to do. Sophia looked over her left shoulder at me, and I saw her fear mixed with rage. She pulled, tugged, and yanked her arm, but it was stuck in the plexiglass and, since it didn’t shatter, the rigid edges grabbed hold of her flesh. I tried to grab her shoulders to prevent her from pulling, but my action made her more agitated, and she made repeated, frantic attempts to free herself. Finally, with one violent jerk, she tore her arm free.

Her veins became fountains of blood, and she grunted and breathed heavily. Nothing I did calmed her. Blood, more than I had ever seen in my life, gushed out of her. I tried to reach for her arm and it splattered into my face. My leather jacket, white shirt, and light blue tie were saturated, and I could feel the salty thickness of her blood in my mouth. She pulled away from me and tried to run out of the room, but the dresser now blocked the door. She grunted and shook her arm, as one does after banging a finger with a hammer, and blood spattered onto the walls, floor, and ceiling. I couldn’t catch her, and the thought occurred to me that anyone watching this scene—a man in a shirt and tie chasing a naked woman around a room that had been the scene of obvious violence—would conclude that I, not she, was the person responsible for the bloodshed. When I got too close, Sophia hit the right side of my head with her arm, and I could feel the blood settle in my ear. At one point, I had to wipe my eyes because I couldn’t see.

I had my back to the door and didn’t realize someone had entered. A small, stocky woman straight-armed me with her left arm and bear-hugged Sophia, bringing her to the ground. Sophia was on her back while this woman sat on Sophia’s stomach. She grabbed a piece of the clothing from the floor and wrapped Sophia’s arm, tourniquet style, as she spoke.

“Sophia, Sophia, Sophia, what did you do? I go to the bathroom for two minutes, and look at this. How did you do this to yourself?”

The woman looked up at the window and quickly surveyed the damage in the room. To my great surprise, Sophia had calmed down and smiled. The woman kept her hand on Sophia’s right arm and spoke to me. “She’s going to need a lot of stitches. Who are you? What are you doing here?”

I found a clean part of my shirt and wiped blood from my face. “My name is Dan. I’m the new manager for this program.”

“Dr. Dan,” she said. “I heard about you. Welcome to Walden House. You’re the expert on how to work with folks like Sophia.”

“I’m not actually a doctor yet, and I sure don’t know about the expert thing.”

“I’m Taimi.” She took her hand off Sophia’s arm and extended it toward me. “Nice to meet you. First day on the job, eh?” She still held onto my hand.

“Yeah.” I surveyed my jacket, shirt, and tie.

“You know what I think your first official duty will be?”

“What’s that?”

“Call 911 and tell them to get an ambulance here—and quick.”

I ran out the door and down the stairs. I stopped abruptly at the landing and ran back up, just as quickly, to the room. Taimi was gently wrapping Sophia’s arm with clothing to soak up the blood. I was out of breath.

“What’s the address?”

Taimi lifted her eyebrows and cocked her head. “Just tell them to come to the group home for the Willowbrook inmates. Believe me, everyone in town knows who, and where, we are.”

All of these challenges were from the outside: foreign dictators, distant enemies, and devious viruses that would have to be defended against and defeated. But our challenges as the baby boomers would come from within: husbands, sons, and brothers returning from Vietnam were ostracized; mothers, daughters, and sisters universally subjugated by not having equal rights; and those among us with mental illness, chemical imbalance, or developmental delay were locked away in institutions to be abused and forgotten.

The fight against the Vietnam War and the struggle for returning veterans took place in the streets, on university campuses, and on TV. The women’s liberation movement took place in the car, at the kitchen table, and in the bedroom. But the other war was much more localized. The revolution happened at one place, a type of hell on earth, in Staten Island, New York—at an institution known as Willowbrook State School. But it was never a school of any kind, and it grew to become more like a concentration camp. Sophia was the first, but there would be six other very challenging people coming to live with her. Some would come from the community, some from other institutions. But all of them would come to this experimental group home, Walden House, because of the neglect, abuse, mismanagement, mistreatment, and deaths that happened at Willowbrook.

It was bad right from the start, and controversy and misery hung over the campus like a stalled cyclone. The 375-acre campus was designed in 1938 and built over the next four years for the objective of housing intellectually disabled children. Yet the needs of returning veterans from World War II usurped this intention, and it was converted into a US Army hospital through 1947. The New York State Department of Mental Hygiene then reclaimed it for its original purpose—but only after a series of bitter negotiations. Over the next four years the veterans left, and in April 1951 it was given its name—Willowbrook State School. No one then would have imagined it would be uttered in the same breath as Auschwitz and Dachau.

The official capacity was for 2,950 residents, but within four years, over 3,600 were crammed inside its walls. By 1963, it had become the largest state facility of its kind in the United States, forcing over 6,000 residents into a space for 4,275. Imagine being in a space designed for 100 people—like a subway car—then imagine fifty more people shoved inside with you. But you are not getting off in one or two or ten stops—you are to live together for the rest of your life.

It was also understaffed (at one point with nearly one thousand vacant jobs) and medical personnel were composed largely of refugee physicians from Hitler’s Germany and third-world countries. In 1964, a New York legislative committee toured the facility and was horrified at the abuse, neglect, and “vile stench.” Their confidential report highlighted the cruelties and mismanagement, but it wasn’t until the violent deaths, which all took place in the first half of 1965, that the institution made the news. A man and, later, a ten-year-old boy, were scalded to death by a shower as a result of poor plumbing and unsophisticated attendants. One resident died from a punch in the throat by another inmate, and a twelve-year-old strangled himself struggling to get free from a restraining device. These deaths and the resulting concerns made it into the local paper.

In the fall of that year, the charismatic Robert Kennedy, then US senator from New York, showed up unannounced. He saw firsthand the conditions and told the press, “I think that particularly at Willowbrook, we have a situation that borders on a snake pit . . . living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.” It is from this quote that this book gets its name—yet it is the resilience of the human spirit to transcend these conditions for which it was written.

Although the bad press activated the politicians, the conditions actually got worse, not better. How did seemingly good intentions and responsiveness go awry? Treatment goals were the problem. The biases and medical model used by psychiatrists at that time in history shaped how the people of Willowbrook were viewed. The psychiatrists’ approach created an environment and a treatment protocol that fueled systemic abuse and neglect and eclipsed a more client-centered method. A physician with limited resources was taught to triage patients by separating acute from chronic, treatable from untreatable, and, for practical purposes, those for which there was hope—from those considered hopeless. Psychiatrists were looking to gain status in the medical profession at that time and felt they had to do as their physician colleagues did. Under this prevailing attitude, Willowbrook had become a repository for chronic patients. Other state institutions jettisoned the worst of their inmates by discharging them there. As one historian put it, Willowbrook had become “a dumping ground, receiving discards as in a draw poker game.”

The distinction between the potential for rehabilitation and the need for custodial care informed psychiatrists’ treatment decisions. This approach was translated into a “solution” by politicians. Then-governor Nelson Rockefeller and the New York State Department of Mental Hygiene revealed a plan and a budget for a 1965 Comprehensive Mental Health and Mental Retardation Program, touting it as “the most comprehensive and extensive in the nation.” It looked like a response to the mess at Willowbrook by preaching to provide high-end treatment for those able to profit from it, and better, more humane institutions for those who couldn’t.

However, $500 million of the allocated $600 million immediately went into the construction of new buildings and state schools. These facilities were identified for use to help those for whom there was hope. But the money, almost all of it by the time it was spent, went for construction and trade jobs—not for providing direct services. By 1969, most of the buildings had been built, but nothing got better in Willowbrook: no better custodial care, no better treatment, and no better staff.

The overcrowding, insufficient and poorly trained workforce, and prevailing insolent attitude that the lower-functioning residents should get only custodial care was still dominant. This added to excessively high absenteeism and low morale among the staff. Not a dime was given for improving care. With the attitude, the lack of funds, and the illusion that the problem was being addressed, Willowbrook sank to the bottom of humanity. It became nothing more than a warehouse for the “incurables.”

However, two physicians tried to change all that. Dr. Michael Wilkins and his friend, psychiatrist William Bronston, joined the staff and systematically began reporting the deplorable conditions to the director, Dr. Jack Hammond, along with specific plans for improvement. Instead of a cooperative response and proactive leadership, Wilkins and Bronston found Hammond defensive, ignoring their written and in-person reports.

The unresponsive and uncaring reactions sparked a reaction. The two activists now possessed very clear goals, nationally and locally. At the national level, they fought to get the U.S. out of Vietnam. At the local level, they worked to transform Willowbrook.

In 1971, New York State imposed a job freeze on the Division of Mental Health (DMH). As a result, staff members who quit were not replaced. At one point, there were twice as many openings as there were nurses at Willowbrook and the institution remained unable to hold on to custodial staff. The cuts in the New York state budget were directly linked to the skyrocketing cost of the Vietnam War. Wilkins and Bronston wanted to fight back as the war literally took food out of the mouths of the inmates and clothes off their backs. Bullets, tanks, guns, and mortars were made from the trust fund meant for human dignity.