I was five years old when my little brother was born. He was early and immediately the doctor knew there were problems. My mother was told in the language of the 1950’s that while he did not look like a mongoloid, he had the reflexes of an infant with severe mental retardation. The doctor said that they would not feed him but keep him comfortable and let him die if she chose. But, if she wanted her son to live, then the doctor’s advice was that the infant should immediately be sent to a state institution for the mentally retarded. They should forget he was born. He said that his needs would be so great that they would rob her normal children of parental attention. So, either way, the good doctor recommended that this infant boy should not invade the Moyer family with his extraordinary needs. My mother, who came home from the hospital before Mark, sat my older sister Bonnie and me down on the couch on either side of her. Heartbroken, she told us that our little brother Mark, whom we named, was mentally retarded and he would need our patience and our help.
I took my responsibility as a big brother seriously. The first time I was trusted with Mark’s care outside was an early February day when Mark was a year and a half old. We lived in Cleveland, Ohio, where winters last a long time. We were to play in the front yard on the hard packed February snow, bundled from stocking caps to galoshes in heavy winter clothing. Mark stood motionless right where he had been set down by my father, blinking with unfocused eyes. I dug fresh snow from under the crust and showed him how to lick it, like a puppy, from my mitten. I was six. We were enjoying ourselves, when a bully boy one year older than me, walked down the sidewalk. He was hat-less with red ears, wearing a leather jacket and leather gloves. He asked what was wrong with my brother and then struck him in the chest with a sudden hard jab.
Mark toppled over backwards, and an unfamiliar rage exploded within me. I showered the little cowardly villain with wild punches, and he stumbled backwards and then ran down the sidewalk. My father hurried down the stairs and gathered Mark, who was fiercely wailing, into his arms.
I realized at that moment that I could not protect Mark from such senseless acts of violence, regardless of how physically close I was to him.
By the time Mark was eight, there were no schools that would accept him, and the neighborhood had become a cruel and savage place. Childhood thuggery victimized my little brother in an ever-spiraling series of attacks by the unorganized gang of children, ranging from four years younger than Mark, to one year older than me. Mean brothers from a large family had left Mark handcuffed to a swing set, tied him behind a large hedge by his neck to a tree, and made Mark chase balls into the street. Two younger boys had beaten him badly with croquet mallets, while their father looked on from his back porch drinking a cup of coffee. In another incident, Mark was struck by a car and his leg badly broken.
In January 1962 as President Kennedy was signing the first federal legislation to develop community resources for people with cognitive disabilities, Mark was remanded to a barbaric state institution 150 miles away in Columbus because no beds were available anywhere closer, and this was the only opportunity for placement whatsoever. It was called the Columbus State Institution for the Mentally Retarded. A concrete sign at its entrance read, “Columbus Institution for Morons, Imbeciles and Idiots”. My parents’ unbearable decision broke our family’s heart. Nonetheless, we visited every month. The depraved conditions and Mark’s state-issued rags, ill-fitting shoes, ever present split lips, large bruises, black eyes, deep scabby scratches, and gouges left all of us feeling sick. We felt a despair and anguish, known only by those who have lived such torture.
By the time I was 16, I realized I could bring something positive into Mark’s life by bringing my guitar and harmonica brace into his prison-like wards. I put on concerts and lead folk songs, spirituals and rock and roll as everyone sang wordlessly along. I continued singing, wherever he lived, for the next 49 years. I never gave up my belief that I could make a difference in Mark’s life. But my needs changed, and at 19, seeking a life path and guru, I moved to California. I was also seeking release from my parents’ alcoholism and the wrenching reality of Mark’s prison.
I stayed in California 14 years. There I gained my Phi Beta Kappa key and a bachelor’s degree in Social Welfare, with the singular Departmental Citation for Scholarship and Service, from the University of California at Berkeley. Then, while still working on the forefront of the disability rights movement, I earned my master’s degree in Rehabilitation Administration from the Business School of the University of San Francisco. I married and had a son. However, all that time I had an open wound on my heart. My California freedom came at my little brother’s expense. I visited him every year, but I knew that my absence put a greater load on my parents and grandmother and left a deficit in Mark’s happiness. I should have been doing my part to keep hope alive.
My father had died in 1980. In 1981, Mark had been moved onto the grounds of another institution near Cleveland and my mother was made his guardian. A total of 80 people lived in five barren buildings, run by a for-profit businessman, who drove a Rolls Royce. In 1982 I returned to Cleveland, as rehab director for the Cleveland Society for the Blind, with the vow to make a difference and somehow get Mark out of his ghastly living conditions. Although Mom was his guardian, I was his advocate. A few years later, I volunteered for a professional committee for the County Board of Mental Retardation and Developmental Disabilities as it was then titled.
I met the woman in charge of residential placement, and I made her my ally. Repeatedly I told her how everything Mark was given was then stolen by staff and other more capable residents. It took me a few years, but finally she turned the tumblers and opportunity’s door opened. Mark was moved into an 8-bed group home.
There is terminology concerning what happens to people who have been forced to live in such large aggregate institutions as Mark had endured. It is called institutionalized mental illness.
In 1982, all of my brother’s housemates and my brother had that tragic condition. So it was that a violent woman constantly would aggress on Mark and her other housemates. Mark was tolerant, but another scheming resident murmured invectives constantly to Mark toward the other woman. Dear Mark was patient for a long while, but he had learned well the type of one-on-one combat that life in those prisons requires. As a result of two violent incidents, when Mark was left holding the bag after his accomplice disappeared, Mark was removed, isolated, and put in a sort of penitential limbo. By this time mother had died, and I was Mark’s fully engaged guardian. After over a year of inaction by those responsible, I demanded the authority for finding Mark housing.
A friend who had a sibling with severe disability was a real-estate agent. With his help we found a place in my neighborhood. The landlord, whom I knew from high school, demanded one-year rental security deposit when he learned my purpose. However, a disability rights attorney and the Fair Housing Act amendments brought things right. I rented that place, furnished it and 33 years after Mark was sent away, I brought him back through a new supported living arrangement.
I could walk to his house. And removed from violent situations, Mark became a peaceful, generous, compassionate, and loving man.
I admit that as a child there were times I was embarrassed by my brother when I would be trying to play with friends, and he would bother us, craving attention. But as an adult, Mark’s behavior was never a source of discomfort for me. I brought Mark to my home and church for every holiday and his birthday, and I visited him every week, took him to eat and ensured that all of his needs were met to the best of my ability. Over the years, Mark was my first priority, although my spouses didn’t have the same commitment nor patience that I had. Two marriages and another relationship ended over Mark. After my grandmother and my mother had died, there was a void. Finally, my wife Cristi loved him as I did, fulfilling his adult life’s needs for a woman’s constant touch of gentle and compassionate giving. My son inherited the gene, and his presence at all family events and his back-up when I was out of town, added to Mark’s normalcy and joy.
Research has shown that siblings of individuals with cognitive disabilities gravitate toward two extremes-either we are very involved, or we are not. For those of us who choose to make our siblings a genuine part of our lives, many benefits result. In GRIT – A Family Memoir on Adversity and Triumph, I describe what I call Multiple Wisdoms. They are the spiritual aspects that all of us share and that we can see in others if we provide the opportunities within which they can be manifest. Such attributes as: generosity, desire to serve others, forgiveness, humor, compassion, courtesy, kindness, courage, joy, and acceptance are innate wisdoms that are within us all. In our busy and demanding lives as the world becomes smaller and distractions greater, making the choice to really commit to another’s well-being comes only to those willing to give time and attention, which by definition could easily go towards our own entertainment or personal interest. I think that heart intelligence is innate, although patience and kindness should be taught by example. It is about selflessness, getting out of the way, and letting another’s well-being matter to us above our own. Anyone in the family can be a teacher; Mark became my teacher. For those children, whose life circumstance has given them the opportunity to give to a sibling with disabilities – that choice can make all the difference. Children need to be encouraged, affirmed, and supported in their giving to a sibling in need of time and attention. That which is of value is inherently difficult. The greater the effort, the greater the benefit.
May we encourage foster and lift up the humble acts of children which give opportunities to another in their family. It is worth the effort.