Chapter One


It took a strange combination of events for me to wind up working in a homeless shelter for mentally-ill women. The experience ultimately proved to be like falling down a rabbit hole and regaining consciousness in a parallel universe. Once you are awake to both worlds—the mainstream, dominant culture where wealth, privilege, and power prevail and the world of the discredited and marginalized—you can’t choose to deny what you’ve experienced. I say that now, but the Lowell in Wonderland story first began with the rabbit hole, and I should give you a little background on that now.

As the millennium was winding down, I was living the life of the minor celebrity and successful bohemian in Manhattan, as up and on top of the world as I’d ever been. Now in my 40s, after years of struggling as a professional photographer with a condition that I had only in my mid-twenties begun to name, I found myself being recognized for my role in the Emmy-nominated film Twitch and Shout and a subsequent memoir, Twitch and Shout: A Touretter’s Tale, that had helped familiarize the public with a neurological condition that had long been feared and misunderstood. People in my East Village neighborhood who had practically rushed to cross the street in the past to avoid my jerking movements or hiccupping grunts (signature symptoms of Tourette syndrome) now approached me as I walked my dog to comment how they’d enjoyed an interview they’d seen me do on TV. By now, I’d consulted on several other films that also featured characters with Tourette and made good friends in the movie business, and I often found myself partying with the arts and culture crowd I’d met through my book tour and Tourette advocacy work. I gave readings at bookstores, bars, and coffeehouses to large and friendly crowds. I’d arrived where I wanted to be. There was recognition and acceptance – and a growing problem that didn’t go with the rest of this picture.

The fact of the matter was that the income from writing Twitch and Shout was finite and dwindling. My photography sales and photojournalism commissions, erratic in the best of times, were almost non-existent after I’d devoted two years to publishing and promoting my book. I might have been a minor literary toast of the town, but the toast was getting stale. Approaching middle age, I was divorced, unemployed, and needed to figure out what to do next. Determined for once to be practical, I decided that instead of gambling on freelance projects, I’d get steady employment.

I’d left a job in social work to write Twitch & Shout, so that seemed like the logical place to begin again. At first, there were numerous leads, but in the interviews that followed prospective employers were inevitably put off by my Tourettic symptoms, the loud noises, grunts, and kicks that played out as my own personal soundtrack. Of course I’d explain the tics away as symptoms of a neurological disorder, usually well controlled by medication, but stressful situations (such as interviews) probably didn’t show me at my best. One potential employer at a nursing home just kept staring at me as if I were an imbecile, appalled that I would even present myself in her office, let alone apply for work at her facility.

So much for notoriety. The tumble from what I’d experienced of prosperity and recognition and what I was now facing—being broke and in debt—occurred before I knew it. Most of the positions for which I applied were as caregivers at non-profit social service agencies. And most paid about $20,000 yearly. That wasn’t exactly a living wage in New York City, but now I found I couldn’t even land one of those jobs.

I had barely tasted the fruits of success when I was thrust back into urban anonymity. It was winter at this point, and as strangers brushed by me on my cold walks to the newsstand to pick up the latest batch of classified ads, I realized no one cared who I was or what I had written, and certainly no one cared to have me interview for work at their place of business. So, upon seeing a listing in The New York Times for a “media and recreation specialist” at a shelter for mentally-ill women, I half-heartedly made the call. It was the term “media specialist” in the ad that had caught my attention. Perhaps I’d find some way of combining my photography and documentary writing skills with the constructive aspects of daily routine and work. The woman who answered the phone at the shelter gave me the address and I took the three subway transfers to a neighborhood in one of the outer boroughs, coming above ground in some blighted part of the city where I’d never been.

* * * * *

I think I’d always been curious about mentally-ill people so starkly set apart from the mainstream. In the years before my diagnosis, growing up a middle class kid in Westchester, just north of the city, I’d often believed my Tourette symptoms were the result of some deep neurosis that the right kind of therapy would eventually cure. Yet I never thought of myself as crazy, not in the clinical sense of being mentally-ill. Later when I moved to New York City, I’d see homeless people on the street, mostly men mumbling to themselves and smelling of alcohol and urine. I was sure I didn’t have anything in common with them, but for some reason, I felt drawn to the realm of the mentally-ill.

In my early twenties, I’d abandoned my college studies at the School of Visual Arts in Manhattan in a blaze of frustration and set out on an improvised journey down the Eastern seaboard. I ran out of money by the time I reached New Orleans, but that’s where I found myself first welcomed as a kind of benign oddity. I spent my first few nights there in a $3-a-night flop house in the French Quarter, where we all had to be out of the place by 7:30 a.m. when the building was put to other uses. After this experience sleeping shoulder to shoulder with gurus, grunts, and drunks, my next stop was a rooming house in the Mid-City neighborhood where I could hear through the walls the sounds of the sick old man in the room next door moaning. Nobody seemed to have a problem with my own noisy outbursts or jerking limbs; I made friends easily and began volunteering at a home for runaway children downtown.

In the years following my sojourn in New Orleans, there were all kinds of jobs in no obvious progression. I was a dishwasher, waiter, cook, liquor store stock-boy, college photography teacher, photojournalist, and spinner of yarns. For a two-year stint, I was part-time research assistant and traveling companion to the neurologist and author Dr. Oliver Sacks, who had just published his bestselling book, The Man Who Mistook His Wife for a Hat. In his book, Dr. Sacks had written about a drummer with Tourette syndrome whose syncopation was a symptom of both his expert time-keeping and his pathology. I had found Oliver’s number listed in the phone book and I’d called him up, saying, “I’m the only one who’s been photographing people with Tourette, and you’re the only one writing about it. Let’s get together.” Oliver agreed and I drove down to meet him a couple of weeks later on City Island, the old maritime community across a narrow inlet from the Bronx, where he lived.

Even during that first meeting, Oliver had seemed more interested in me, or in writing about me, than in the photographs I showed him. Oliver soon contracted me to work with him as a photographer, and in September 1988, he published an article in Life, which recounted our trip together to northwestern Alberta, Canada, where we visited with a Mennonite family widely affected by Tourette.

In my travels with Oliver, I used my skills as a photographer to chronicle the lives of Touretters as they interacted in the real world, outside of the confines of the doctor’s office or examination room. Together we traveled to Europe, Canada, and across the U.S. As we got to know each other well, I knew that Oliver was writing about me in his notebooks, almost as if I were a subject he might write about later, while at the same time I was busy photographing him, linking us together in a bond of mutual observation and reflection.

After our travels ended, I settled in Cold Spring, a picturesque small town along a beautiful stretch of the Hudson River, where I entered graduate school and settled into a life of teaching and working as a photographer. I also fell in love and eventually married in 1991. Soon after, though, perhaps struggling with my own symptoms and engaging in more than casual drug use, I found myself in the middle of a divorce and my fragile stability crumbling. A family friend at the time worked for an organization in Manhattan that provided housing and counseling to mentally ill people, and knowing my circumstances, she suggested I interview for a new program sponsored by her group that was being launched on the Lower East Side. I thought a return to social work and the kind of satisfaction I’d experienced from that first job in New Orleans sounded like a good idea, but I didn’t know what to expect. Would it be dangerous? Would I be qualified? Could I handle the mentally-ill clients? Could they handle me?

At the interview with the group, called Community Access, I was introduced to Gordon Hough, who briefed me about the new program and showed me the Clubhouse for Community Access. Clubhouses are officially known as psychosocial clubs, gathering places that can become therapeutic spaces through the experience of interaction and positive reinforcement. The idea of community access clubhouses, which were influenced by the broader Civil Rights Movement and the trend toward deinstitutionalizing mentally-ill people, had originated in the 1960s at Fountain House in New York City. The clubhouse served as a place to transition between discharge from a hospital or institution and a return to living independently in the community. The clubhouse had by now become such a standard concept that virtually every social service agency operated one.

Gordon ushered me to the Avenue C property and once inside a ramshackle series of rooms, he introduced me to the club’s director, Lois, a commanding dreadlocked woman who interviewed me along with Gordon and another staff member in a small cramped office. While we discussed my background working in camps with emotionally troubled children and in a group home with developmentally disabled adults, Gordon explained why I might be right for the position of activities specialist. After the group quizzed me about my perceived strengths and weaknesses, I felt comfortable expressing my concerns and asked them if there was ever any violence in this environment.

“Sometimes,” Lois assured me, “but it’s very rare.”

As if on cue, at that moment a large woman burst through the door, lunged across Lois’s desk, and grabbed her by the throat, screaming, “I’m gonna kill you, bitch!”

Staff members quickly appeared and restrained the woman. With the situation defused, we all breathed a sigh of relief… and then started laughing uncontrollably. Our mutual and immediate respect for the client’s comic timing was what made me accept the job on the spot. I think it was the combination of teamwork and black humor that kept me there for the next two years. At Community Access I learned a great deal about working among people with diverse personalities and backgrounds, both staff and residents alike. I was taught by the social workers how to handle difficult situations by either defusing them or arriving at some type of optimal resolution, and by the time I left I was confident I could return to social work at any time in the future.

Arriving at the women’s shelter now, I found that confidence firmly shaken. What a difference location makes. In this part of New York, teamwork and humor weren’t easy to spot. The neighborhood looked forgotten and abused, a hellish mix of industrial zone and residential slum. The vibe was that no one wanted to be here, and no one wanted you here either. As I tried to match the numbers on the buildings to the address I’d been given, I observed a steady parade of rats, crack salesman, hookers, and the homeless. In the gray light that flickered between the crumbling buildings, I stumbled upon what had clearly been an old public school. This was it: the women’s shelter.

Certainly, the word “shelter” felt like a cynical misnomer. The ominous-looking building was officially dubbed a “transitional living community,” since the women only resided there for a year or so. A professional observer, I tried to gauge my surroundings fully but in no way did I feel connected to them. Barbed wire surrounded the complex. Directly opposite the building was a barren field littered with the trash and debris of city life, also framed in torn fencing. The next street over, children could be heard shooting hoops, the sounds of their raucous play filling the air. This block, by contrast, was for those whose enthusiasms had long since been extinguished. I would learn that the inhabitants of the dilapidated houses lining the street were mostly the women’s friends, johns, relatives, boyfriends, girlfriends, and those supported by our small community. The most industrious among them were the young black men gathering metal scraps to sell to junk dealers; a coffee-and-sandwich wagon that mainly served the staff, and construction workers building a chicken-packaging factory in a nearby lot.

To enter the building, I had to go through x-ray machines, metal detectors (“mental” detectors, we later joked) and past a barrage of guards armed with walkie-talkie radios that squawked unintelligible messages. I found my way to what seemed to be the administrative office, where two women were waiting to interview me. Both Bobbie and Linda knew me as the photographer and narrator of the film Twitch and Shout, which they had seen on television three years earlier. Intriguingly, both women had sons with Tourette syndrome and obsessive-compulsive disorder (OCD), the same problems I have, and it was not by accident they asked me to meet with them. I was skeptical how this particular skill set could be relevant to their job opening, but I was game to find out.

In fact, the shelter wanted me to teach photography to the residents and had received a grant to cover the cost of equipment and instruction. The goal of the program was to explore photography as both an art and a form of communication. My contract would involve much more than teaching photography—I was to take the residents on outings away from the shelter; to help distract them from their problems as much as to help them cope with them; to use the activity of picture-taking for recreation, education, even personal growth. I would need to gain their trust in this dismal environment to be able to teach them, and not just how to operate a camera. Despite some logical reservations, I accepted the job.

As I left the shelter that day, I wondered what I’d gotten myself into. Two young black men drove by in a white Mercedes Benz and stopped to talk to some of the women leaving the shelter to pursue who knows what activity. A lame black cat hobbled across the street while the Mercedes idled. I wasn’t sure what I’d expected, but I didn’t imagine I’d be spending much of my free time getting to know the neighborhood. Fumbling nervously in my pocket, I fingered a tiny folding 35-millimeter Minox camera.

* * * * *

Jamaica straddles a blaring stereo speaker, almost smothering it, her denim mini skirt hiked up to her hips. She gyrates with each undulation of the bass, hands clasping her crotch. People walking down the hallway are only mildly interested in her display. It’s hardly a rare occurrence. All of the women on this floor of the shelter have a life-long history of psychiatric disturbance, something that prevents them from leading fully productive lives. They are women of all colors, sizes and stories.

Take Mary, who really isn’t crazy at all. Since it seems everyone she knew has died of AIDS, she’s taken shelter in the family here. Tammy is a self-declared bull dyke, and her bitch is the darkly beautiful Sheila, an HIV positive woman who doesn’t talk much. Sheila is cheating on Tammy with a woman from another floor. Rose is an elderly Jewish woman who resembles my grandmother, constantly kvetching about something, like the little old lady next door gone severely wrong. “I need money Lowell,” she’ll say. “Please speak to that man about it. I can’t talk to that man. He won’t give me money.” That man is Godfrey, her case manager, who like administrators in many such organizations acts as a payee for clients unable to negotiate their finances.

Spring is in the air, and things are heating up with Jamaica, whose writhing has reached quite a fever pitch. When I report this to my boss, Linda, she sighs and asks why I don’t stop her. Because it’s not in my job description, I want to say, and because I’m not sure I’m ready for how Jamaica will react. But I just throw up my hands.

“I think it calls for a woman’s touch,” I say.

Godfrey is the only other male on our staff, a tall black man who strikes me as an extremely diligent social worker. He is also an avid amateur basketball player. Godfrey was raised near this neighborhood and he has told me that without the strong upbringing from his parents and his love of athletics, he could well have found himself one of the homeless or drug-addicted himself.

Bobbie, who runs the program, is Caucasian, a tall, imposing, Buddhist twelve-stepper who has OCD as well. Sarah, who shares my office, is in her mid-twenties and takes Prozac for depression. Linda, my supervisor, has the son with Tourette syndrome and obsessive-compulsive disorder. A common joke around here is a riff on the slogan heard in the television commercial for the Hair Club for Men, where the balding president swears by his product: “I’m not only the Hair Club President, I’m also a client.”

Then there are the guards, posted on each floor. The odd thing is that most of the guards are Nigerian women, striking and Amazon-like, but who seem to share a stigmatized view of mental illness. One of the beauties is clearly mentally-ill herself. She often dances and hallucinates in our hallway to music no one else hears. The staff speculates whether she is in the right place but on the wrong team.

Most of the security guards are nice enough, though. They pose no real threat and serve no real purpose. It is all for show, an illusion of order and civility. But it is rumored that male and female guards are receiving sexual favors from the residents in return for special treatment, such as entry into the building at night past the ten o-clock curfew. The sad truth is that the price of a blowjob on this street is only slightly more costly, five dollars plus a vial of crack, available to anyone so inclined.

Into this combustible mix we bring our own private battles. We try not to let our personal lives affect our work, but one particular day I am in a black mood, and it shows. On my subway trip to work a passenger who doesn’t appreciate my Touretting harasses me. I have been waiting on the platform, not conscious of my twitching or noises until I notice a man staring at me from a subway car with open doors. When our eyes meet, he yells, “You must be a fucking retard!”

“Yes,” I reply, not raising my voice, “And you must be a very smart man.”

Thankfully, the doors close just as I speak, but I can see him screaming through the glass, his breath coalescing into wet steam on the inside of the train window, his fists pounding against the doors as the subway roars away. It is as if he is outraged that a lower life form would dare to speak back to him.

I am still feeling shaken when Lisa, one of the residents, comes into my office for advice on a problem. I don’t want her thinking I am irritable because of her, so I tell her about the incident. She pats me on the shoulder.

“Well, you know what they say,” she quips.

I don’t, and I am almost afraid to ask.

“Mother made ’em, Mother named ’em, Mother fuck ’em. Don’t let no one diss you because you’ve got Tourette, Lowell.”

In that moment, we become allies in some undeclared war. While my condition may not be a mental illness, I too have been stigmatized in much the same way as she has. I know that we have a true rapport, an essential understanding of each other.

In the days and weeks and months to come, Jamaica will still get off to music, her legs appreciatively wrapped around the bass notes from the speaker, and I will learn how to reach over her for the radio and turn down the volume.

But I will also see that she’s on to something: The pounding vibrations are like a chorus of heartbeats in rhythm with each other. Occasionally, there is dancing, unexpected and expressive, to tunes the rest of us forget we know.

* * * * *

This book is available in Kindle edition from Amazon.