ANCORA IMPARO BY DAVID ERVIN ■ GUEST COLUMNIST
In the 21st Century, only 15 States in the U.S. are institution free. Meaningful self-determination for people who happen to have disabilities remains elusive.
My career is littered with most extraordinary examples of the best luck imaginable. Several months before graduating with what I firmly believed to be an extraordinarily impressive undergraduate degree in Psychology from The Pennsylvania State University, I’d made the fateful decision that I would not go immediately into graduate school. I was, after all, quite tired and worn out from the trials and travails of the impossibly difficult life of an undergrad. Instead, I decided that making money sounded like a good idea, particularly because people kept telling me I needed to act like an adult, pay for seemingly trivial things like auto insurance, and start a career in something, anything.
And so it was that I went to work at Community Services for Autistic Adults and Children (today, just CSAAC) as a residential counselor… for a whopping $4.50/hour. I worked in a group home with four gentlemen who had autism. To say that I fell irrevocably in love with the work in that group home with those four men would be to grossly understate the profundity of the experience. I was lucky enough to meet Jim, all 6’4” and 250 pound Jim, who taught me more about humanity, about potential and about hope than I’d learned in the 22 years I’d traversed the planet to that point. I loved Jim especially, who invited me into his world, into his life, without conditions or hesitation. I loved Jim even when he beat the snot out of me when struggling for a way – any way – to express what he was feeling, his fears, his excitement, his most closely held, innermost insecurities. I learned that his physicality wasn’t rejection of me, but was the only means by which he could communicate with me. That he entrusted himself to me was, then, and remains one of the greatest gifts I’ve ever received.
Six months later, apparently because I was a damn good Residential Counselor, CSAAC promoted me to Program Coordinator. It certainly sounded impressive to me, and given it came with a hefty raise that would help me act even more like an adult, I happily embraced the opportunity. Of course, what made me a competent Residential Counselor was not the stuff of a successful Program Coordinator. I tried to be a great Program Coordinator, really I did. But alas, it was three short months later that CSAAC’s then executive director introduced me to life away from CSAAC. She was kind and supportive, but quite convinced, apparently, that I should go be less than great somewhere else!
As you might imagine, from a cocky 22 year old who thought he knew it all, I left CSAAC feeling quite sorry for myself. I believe I moped for just about three months. I couch surfed, watched a helluva lot of soap operas, and teetered on the possibility of pursuing a career in sales, or retail or virtually anything that would get me big bucks as soon as conceivably possible. All the while, Jim’s influence on me was unshakable. As I wallowed in my own pity party, I kept coming back to what was emerging as an inevitable truth: working with people with developmental disabilities was truly where I wanted to be. I had so much more to learn.
It was an innocuous advertisement in the Washington Post. It had the words Georgetown University in it, that much I remember. I responded with more hope than expectation.
In still another stroke of extraordinary good luck, I was hired to work for Georgetown’s University Affiliated Program (what we today call University Center for Excellence in Developmental Disabilities, or UCEDD). What I didn’t realize at the time is that fate would have me assigned to the Forest Haven project.
Everything I thought I knew and understood about the world would be shattered. Every assumption, every expectation about human conduct, about how we are to treat one another, how we are to treat our fellow humans would be challenged to its core.
My life would change forever on a crystal clear, sunny, blue skied day. It was the day I was institutionalized. I was told that I was to report to Building C at Forest Haven. I was issued a crisp, bright white Georgetown University lab coat, directions to Forest Haven, and a hearty “good luck” from my new employers.
Forest Haven opened for business in the 1920s. Like other, similarly serenely named places, Forest Haven was built to offer the finest custodial care to the people with developmental disabilities of the District of Columbia. (It’s important to note that our current language is nothing like it was at this period in our history. Instead, words like imbecile, idiot and feeble-minded were used to describe people.) Built on hundreds of acres in Laurel, Maryland, 25 miles away from DC, Forest Haven was, in every important way, out of sight and out of mind. So too were the people who, until 1991, called Forest Haven their home.
I lived then in Gaithersburg, Maryland. The drive to Forest Haven that first day took about an hour. As it happened, I drove by the entrance of Forest Haven twice, not finding it among the densely, old growth wooded landscape as far as the eye could see. When I finally did find it, the entrance was remarkable for the two red brick columns that stood sentry to the entry, attached to which were massive, black wrought iron gates that stood open, almost invitingly.
I drove through those gates and onto a narrow, winding road that led me deeper into a world I’d never fathomed. No amount of academic study or achievement can possibly prepare you for this.
As I crested the top of this winding road, Forest Haven opened itself to me. Red brick buildings dotted the landscape. Green, freshly mown patches of grass. A labyrinth of aged, gray lanes that served as our ribbons of transit. And playgrounds. Empty playgrounds. Swings gently swaying by the breeze of the day. Even today, 25 years later, I hear the haunting echoes of children from a time long ago, long forgotten.
I was to report to Building C. I had no clue where Building C was, of course. I might have stopped someone to ask, had I seen anyone. I drove around searching for Building C for what my memory counts as 15 minutes—it was much more likely three or four. But however long it took me, however much distance I drove, searching in vain, I never once saw a person. Forest Haven was home to hundreds of people in 1987, thousands in its heyday, and I saw not a single human. It was chilling.
I finally found Building C. I pulled my car into the back of Building C and walked around to what I assumed was the entry. The entry was protected by two screen doors, hiding behind which were two steel doors that were propped open. I pulled the left screen door open to enter. The screen doors were the sort that used to hang commonly on country homes—no fancy, pneumatic closers that gently and quietly close the door. The screen doors at Building C of Forest Haven were made of wood, framing screening, attached to the door frame by simple hinges, and closed by a single long, simple spring. And when the screen door closed behind me, it made its inevitable and loud clack. It was startling, and I remember in that instant the aching thought that I was enclosed, enshrined forever in the history of this place.
Nearly 30 years after that day, that moment, I still search hopelessly for a way to describe those first seconds in Building C at Forest Haven… White, bright sterility to match my lab coat.
The flooring was tile. Cream colored with flecks of gray. The walls were cinder block, painted hundreds of times over with off white paint. The lights were fluorescent, blinding, uncovered. The smell… Geraldo Rivera, in his 1972 expose on Willowbrook, called it “the smell of death.”
I have tried, all these years, to both find a way to adequately describe the smell and to eradicate it from my memory. I have failed at both. The smell, of perhaps ammonia, of bleach, of urine, of human in some inestimably horrible combination, will be with me forever, a permanent mark on my soul, a reminder.
It is vile and forever evocative, and I wish it gone…
And so into Building C I walked. I walked past open doored bedrooms, if you can call them that. They were decorated by six or eight or four beds, each immaculately made; by dressers that all looked alike, indistinguishable. These weren’t bedrooms, these were barracks. Privacy screens were unnecessary in this world in which people weren’t fully people. The core construct of custodial care was never marked by contemplation of the humanness of people. Privacy was considered beyond the reach of sub-humans, of people we could call idiot or imbecile and not bat an eye. So too was their dignity, as I would learn this very day.
I came upon what I would later learn was the Nurse’s Station. It was enclosed in glass, which was installed on top of the counters to the ceiling so that the nurses were fully protected. I recall there being three or four nurses in the Nurse’s Station, all wearing white lab coats, all huddled around and over something that was so gripping that not one turned to ask who I was, what I might want or what I was doing there. Neither, in fairness, did I tap on the glass to introduce myself, to tell them why I was there or what I was to do.
Just beyond the Nurse’s Station was an open doorway. As I came to that doorway, I was met with a cacophony of sound the likes of which I’d never heard before. I looked into what I would later learn was the Day Room. It was a box, square shaped. Lining every inch of every wall in the Day Room was furniture. It was sofas and loveseats and chairs. Not sofas and loveseats and chairs that we might like to have in our homes, but 1970s-style, colored, vinyl covered, block wood sofas and loveseats and chairs. And in every seat of every sofa and loveseat and chair in the Day Room of Building C at Forest Haven was a person. They were seated or crouched, laying or leaning, some standing. And seemingly all were making noises. It was loud, chaotic, as the people who called Building C their home engaged in the most almighty scene of what we used to call self-stimulatory behavior I’d ever seen. Finger and hand movements, rocking, clicking, grunting, moaning…
In the far corner of the Day Room hung a television. I can’t tell you what was playing. Neither could the people who were in that Day Room that day in 1987 have told you. It mattered little. That TV wasn’t there for their entertainment. It was there as their attendant. As those three or four nurses huddled over something far more important in their Nurse’s Station.
I didn’t go into the Day Room. I don’t know why or what drew me to it, but rather than going into the Day Room, I turned around. What opened before me was an impossibly long, narrow hallway. Some distance away from me, down that impossibly long, narrow hallway, I saw something. I couldn’t quite make out what the something was, but I was inexplicably drawn to it.
It couldn’t have been 10 steps… perhaps it was less. I don’t remember…
I began to recognize that it wasn’t a something. It was a someone.
It was a young man. Laying on the cold, tile floor. Without a stitch of clothing, naked. In a pool of his own urine.
A fellow human. Cold. Alone. Perhaps afraid, stripped of his dignity. Unable to stand.
What I couldn’t appreciate in that moment, what I couldn’t possibly grasp in my shock, in the emotions of those short but seminal moments, is that that young man gave me a gift I can never repay, the best of my unimaginably good luck. He allowed me to help him to his feet, to help clean him, to find clothing and dress him. He gifted me the extraordinary opportunity to restore some measure of his inalienable human dignity. He might have pushed me away, but he didn’t. He invited me into his world when he was at his most vulnerable.
That day and the moments that comprise it changed me forever. The touch of his hands, the weakness and uncertainty of his grip; the slowness of his movements, his unwillingness to look me in the eye in his unwanted and undeserved vulnerability. That day, that young man stayed with me… all these nearly 30 years later. This seminal experience is perhaps the greatest example of my good luck. As painful as these memories are, I walk through them often, I tell the story so that we can all learn from them.
I spent better than three years of my life at Forest Haven. It was my institutionalization. I wish I could tell you that I didn’t experience the horror of that first day in all the days that followed, but I cannot. I wish I could tell you that the era of institutionalization of people with developmental disabilities is a relic of our past, but it is not.
The ghosts of Forest Haven, which haunt me still, call out to us to demand better. In the 21st Century, only 15 States in the US are institution free. Meaningful self-determination for people who happen to have disabilities remains elusive. A full and unconditional embrace of people with developmental disabilities in our neighborhoods and our communal life, in the fabric of our collective humanity, is still beyond our grasp.
I was raised to believe – and I am raising my sons to believe – that all humans are worthy of our wonder, our love and respect. All humans are born into this world to make an impact, to learn, to love and to teach. If we can commit, without condition or reservation, to the fullest expression of our own humanity by glorifying the expression of all humans, without regard to the presence or absence of disability, then we will have, together, learned the lessons offered me that crystal clear, sunny, blue skied day in Building C at Forest Haven.•
ABOUT THE AUTHOR:
David A. Ervin is the Chief Executive Officer of The Resource Exchange (http://www.TRE.org) based in Colorado Springs, CO
Photo Image: SHAMEFUL MEMORIES: A day room in the Curley Building at Forest Haven.“I wish I could tell you that I didn’t experience the horror of that first day in all the days that followed, but I cannot.“