Ideas Move is about using storytelling as a tool to illustrate a particular moment in time which has provoked or will stimulate dialogue and action on public policy. Trudeau Fellows, Mentors and Scholars are our storytellers.

"No More Ward Four": The Power of Transformative Friendship

by Lilith Finkler,
Trudeau Scholar

I have been blessed with the friendship of many kind, caring people. Few connections have moved me, however, as deeply as my bond with Jeremy, a man of courage, faith, and substance. I met Jeremy when I worked at a group home for developmentally disabled adults. I recall our first meeting with some sadness. Jeremy was in the living room as I entered the house. He shrieked loudly; "If you don't behave, go back to Ward Four, concentration camp, no food, no clothes, no nothing!" I stood silently, uncertain of what to do. As I gazed at the man, I wondered what experiences had led him to imbue those words with such intensity and rage. Throughout the first few years of our friendship, Jeremy repeated the same warning often, such that it resonated within me, compelling me to seek its deeper meaning.

Jeremy was often angry and was assigned one-to-one staff support. He would push, scratch, or bite others or himself. He screamed often, declaring his rage at the world. When we first met, more than twenty years ago, I was happy to work with Jeremy. He somehow drew me into his world, almost unwillingly, teaching me painful but important lessons. I worked at Jeremy's residence for only a year but have remained his friend for over twenty. We speak on the phone or visit regularly.

As I read his file, it became clear that the social service system designed to care for Jeremy and disabled children like him had failed miserably. Jeremy was seven years old when he was sent to Smith Falls, an institution far away from everyone he knew. Unfortunately, his father was seriously ill and his loving mother could not take care of her husband, disabled son, and siblings without additional support.

Reports of Smith Falls in the 1950s describe the asylum as "a massive custodial institution whose design recalls the madhouses of the eighteenth and nineteenth centuries." One photo of a ward cubicle shows beds so close together that the chairs between them have been moved sideways.

Disabled persons who lived at Smith Falls when Jeremy was there have written eloquently of their experiences. They describe an emotionally barren environment, devoid of intellectual stimulation. Parents comment that the name "The Ontario Hospital School" was misleading, as children did not receive an education there. Some former residents describe physical and psychological abuse. Inmates tell of being forced to wash the floor with a toothbrush as punishment for perceived misdeeds.

Later, Jeremy was sent to Huronia Regional Centre, where he spent seventeen years of his life. Articles published in the local newspaper, the Orillia Packet and Times, reported massive overcrowding at the large institution, the use of crib cages to restrain residents, and allegations of physical abuse by staff against patients. Significantly, one article mentioned Ward Four, the very place that Jeremy described as a "concentration camp." One staff alleged in the article that some counsellors forced residents to swallow lit cigarettes. The distressing exposés rang true. Vulnerable children and adolescents are easily victimized.

Jeremy

I had not read such reports when I first met Jeremy. Rather, as my interest and commitment to disabled persons grew, I sought information, books, videos, anything to help me understand Jeremy and others like him who were "sent away" at a young age. Historically, it has been common practice to segregate disabled children, separate them from their peers. Today, we segregate disabled children in "special" classes, group homes, psychiatric "treatment" centres, halfway houses, and in hospitals. Instead of separating disabled from non-disabled, I wonder whether it would be more socially responsible to provide integration supports so all persons could live together.

Jeremy and I chat during our visits. Our conversations typically centre on items such as food, clothes, or specific daily events. It is difficult for him to grasp abstract ideas. When I ask Jeremy what he does at work, he replies: "Had lunch" or "Went out for coffee." These are the important aspects of his day. Jeremy also shared a great deal about his life. When we first became acquainted, Jeremy would tell me about Ward Four and I would ask questions, hoping for details. Jeremy responded by withdrawing into himself. I interpreted this to mean that he did not wish to discuss painful parts of his past.

Jeremy was often echolalic, repeating back to me whatever I had said to him a few minutes earlier. One day, it occurred to me that perhaps echolalia was Jeremy's method of communicating. When Jeremy began his rendition, "If you don't behave, go back to Ward Four, concentration camp, no food, no clothes, no nothing," I repeated the words back to him with the exact same intonation and intensity. His head jerked forward slightly, his fingers twisted around each other as they wrestled with the air, and his body shook vigorously.

"No more Ward Four. No more B.J. What did B.J. do?"

"What did B.J. do?"

"Kick the shit right out of you."

"Kick the shit right out of you."

"That's right. Where's Mrs Smith?"

"Where's Mrs Smith?"

"In K3."

"In K3."

"What did Mrs Smith do?"

"What did Mrs Smith do?"

"Gave you an enema. Made you sit in it."

"Gave you an enema . . . "

"No more Ward Four, Lilith, no more Ward Four." As Jeremy uttered those words, he began sobbing. I held his hand and rubbed his back. I attempted to console him, knowing simultaneously just how impossible it was to wash away all that pain.

Inadvertently, I had discovered how to converse with Jeremy. By repeating back to him what I heard him say, I assured him I was listening and that, perhaps more importantly, I believed him. When Jeremy spoke as an echo, he had demonstrated how he wished that I would communicate with him. The short exchange proved a watershed in our friendship. Implicitly, Jeremy had trusted me enough to share part of his history. I was deeply moved.

Today, Jeremy does not discuss Ward Four with me nearly as often as he did when we first met. In the early days, he mentioned his institutional experience at least once or twice each visit. Now he raises it only during periods of stress.

Upon reflection, I realize that there are many resources, support groups, written materials, Websites, etc. for abuse survivors. However, little is available for persons who are developmentally disabled. In fact, because of their disability, many persons who lived in institutions are not believed. Challenging people in positions of authority is difficult without support.

I pray that my ongoing acknowledgement of Jeremy's experiences is helpful. I continue to reassure him he is not to blame. One night several years ago, when we spoke about Ward Four, I introduced the idea that the people who hurt him were bad people.

"B.J. kicked the shit right out of you. "

"B.J. was bad. He hurt you."

"Jeremy was a bad boy."

"No," I reiterated, "Jeremy was a good boy. B.J. was bad." I repeated the short sentence and emphasized the word "bad." I wanted so much for him to understand. There was the silence, the characteristic silence when I know Jeremy is digesting an idea, considering the possibilities. He responded: "Jeremy is good. Mrs Smith is bad. B.J. is bad. Miss Malcolm is bad. Eric Johnson is bad." He continued naming his long list of abusers. Finally, Jeremy had made the connection.

Occasionally, when Jeremy and I are sitting beside each other listening to music or watching TV, Jeremy will ask for confirmation that he is good. The staff that hurt him were bad. I reassure him I have not changed my mind.

Today, eighteen years later, Jeremy expresses himself more easily. He often uses songs to communicate his feelings. One night we discussed vacations. I explained that I was going on holidays but I would call him regularly. I emphasized that I go away but always come back. I repeated my promise to be his friend. Again, there was the characteristic silence. Again, there were the same hand movements. Then, out of nowhere, he sang the words to a Beatles' song. "She loves you ya ya ya, she loves you ya ya ya. With a love like that, you know you should be glad." I was floored. Jeremy had understood; he had grasped the depth of my caring.

Of course, our relationship involves not only expressions of affection but also anger, resentment, and outright frustration, too. Sometimes, I simply cannot give Jeremy what he wants. He does not understand that there are no bananas at the store or that the coffee shop has closed. He insists I provide what he demands. I sometimes reply in irritation, "Give me a break!" To make matters worse, Jeremy answers in echo-like fashion, "Give me a break!" mimicking both my intonation and frustration.

Sometimes, I am insensitive to Jeremy's needs, my own ignorance getting in the way. Initially, I told Jeremy not to drink so much water. I was concerned about the impact on his kidneys. I did not realize that his medication caused dry mouth and that he needed water to alleviate it. I made an assumption that I knew what Jeremy needed better than he did. Even as a "friend," I retain institutional power and the privilege of able-bodiedness.

This privilege associated with the appearance of "normalcy" is most evident in social situations where strangers approach me to ask about Jeremy, but then shy away from speaking with him. Typically, I refuse to answer questions. I encourage questioners to communicate directly with Jeremy. It takes emotional energy to constantly deflect public inquiry and insist on Jeremy's personhood. If I become weary of such social exercises, I can only imagine Jeremy's exhaustion. However, it is only by affirming our bond in public as well as in private that attitudes will change.

During our first year of friendship, Jeremy experienced extreme stress. In a moment of uncontrollable rage, he had bitten my hand. Jeremy knew that he'd hurt me, that I'd seen a doctor and received an injection. He was anxious during our next visit and wanted to confirm that I would return the following week. I told him, "I'm angry, but I still care about you." He repeated the phrase back to me, but I was unsure if he understood its meaning.

A few months later, Jeremy and I agreed to walk to the park. I looked forward to the greenery. Upon arrival, Jeremy insisted we return home. I was frustrated. The irritation must have been evident in my voice. Jeremy put his arm around my shoulder and stated calmly: "I'm angry, but I still care about you." I laughed, hugged Jeremy, and stood silent in the wonder of it all.

As I reflect upon my friendship with Jeremy, I realize what a great deal I have learned. Perhaps most importantly, I had assumed years ago that if another human being could not communicate the way I did, that they did not have anything important to say. In a society focused on sound bites and the rapid transmission of ideas, such an assumption may seem reasonable. However, Jeremy taught me that human beings express themselves in a myriad of ways, both verbal and otherwise and that our emotional and political growth results from the readiness to listen, see, and experience that which others are willing to share.

Lilith Finkler and Jeremy remain friends to this day. Jeremy works in a sheltered workshop. Lilith is a student at Dalhousie University. Names have been changed to ensure confidentiality.

The Trudeau Foundation invites you to react to Lilith Finkler's article in an on-line discussion. Please consider the following questions:

• How can non-disabled persons be allies to disabled persons, both in public and in private?
• One disabled person commented; "The state can legislate my right to accessible transportation and my entitlement to material in Braille. Which law can insist that co- workers invite me to lunch?" How do we ensure that disabled persons are part of the fabric of the society in which we live?
• Why do neighbours oppose establishment of a group home or non-profit housing development when they claim support for integration of disabled persons?
• What political, social, or legal changes would be necessary to prevent institutional abuse of vulnerable persons?
• Who decides what is "normal"?

And click here to join the discussion.