“Your brother’s a retard! Your brother’s a retard!” I clearly remember standing in the upstairs hallway of my elementary school not knowing where to look as a boy yelled this at me. He was older than I was and also had a brother who was intellectually handicapped. So it stunned me even more that he was slinging these shots at me. Bullets that took more than blood, they tore away parts of my soul.
His words took the wind out of me and I didn’t know what to do. Thankfully a teacher came out in the hallway and told everyone to go to class.
I was young and thus was shaken by this affront. I never told anybody about it, but I think my other brother and my sisters also went through very similar situations.
The second child in our family, Paul was born intellectually handicapped.
The elder boy among my siblings, Paul is older than I am by nine years. What pride and joy my parents must have felt to have a little boy after having three daughters, two of whom passed away. So much grief in such a short period of time, yet so much hope. According to my mother, Paul was the most beautiful baby. Dark haired with piercing blue eyes, he looked a lot like my mom and resembled a number of relatives from my mother’s side of the family. I am not certain but I believe he was named Paul for my uncles, both of whom died very young: one, my mother’s brother, a fighter pilot who was killed while flying a bombing mission over Germany, the other, my father’s brother, who died young from complications of scarlet fever.
So my own brother Paul carried a legacy in his name. As he grew my parents would remark that he was not developing along with other children his age. There was a great deal of panic and fear and, of course, guilt: What did I do wrong? How could this happen? Why?
In the end there were never any answers. One doctor told my mother that Paul’s deficiencies might have been caused by the vacuum cleaner, that he got frightened and that caused his disability. What kind of doctor would tell you that the vacuum might have caused your son’s retardation? But those were the days when few doctors knew anything about the mind or the brain or the psychological issues around having a child with a disability. The world, and most importantly the family members, were shamed by these illnesses.
My parents, however, spent countless hours and endless days and nights doing what they thought best for their son. They were pioneers in opening up the world to the possibilities of accepting children like my brother into the neighbourhood, into the homes of neighbours, and most importantly into their hearts.
Paul thrived in our young neighbourhood; part of the baby boomer generation, the large group of kids growing up around us were mostly English, white, and either Catholic or Protestant. Our neighbours embraced our family and our differences, an acceptance which, I am sure, paved the way for my parents to set out to make more changes in the community.
One of these changes involved the school system. As a little girl I remember driving with my mom in her little red Volkswagen picking up kids from all over the West Island of Montreal, the area where we grew up. I used to have to sit on the hand brake to make room for one more child. My mother would pick up these children, all of whom were intellectually handicapped, and drive them to a special class she and other parents had worked on getting going in our neighbourhood. And then she would pick them all up after school and drive them home. She and I did that for a year before the school board would offer these parents a bus for their children to attend a special class.
As he got older, Paul became famous in our neighbourhood. He knew everyone. He could walk for miles and never tire; he was sort of like Forrest Gump that way. He would start out on any given day and walk downtown, to the airport. Once he walked as far as Mirabel Airport, which is miles and miles from where we lived. He was strong, so the distance never bothered him. After that walk to Mirabel, though, my parents started to teach him about the bus. Once he had the bus system down he could literally go anywhere, and he did.
He would spend days as a young boy on the swings in our local park, singing his heart out. He sang the songs of the Beatles, his favourite band; he and Paul McCartney shared the same birthday, which was something very special to Paul. He had every 45 and every album the Beatles ever produced. And then one day they were gone, sold to a friend of my other brothers for something like ten dollars.
As a little boy Paul showed great talent in art. He could draw any kind of tractor or crane down to the smallest detail and would spend hours drawing these big trucks. As he got older he became fascinated with planes and started building model airplanes, anything from the early planes to jets, each one drastically different from the other. He had shelves full of them. Like the Beatle albums, those too disappeared one day, most of them given to younger family members, cousins and people Paul knew in and around where we lived.
Yet his artwork carried on. Some of his paintings have been sold. Each year his paintings, watercolours, would be shown at the Art Show in Pointe Claire, a famous exhibit that my parents helped get off the ground., featuring artists from the Lakeshore Artists Association. Part of the proceeds went to the West Island Association for the Intellectually Handicapped.
Paul has also donated several of his paintings. One of these went to the city of Pointe Claire, and to my knowledge is still in the Mayor’s office. One was also donated to the office of the CEO of Air Canada. Paul lived at the Montreal Airport most of his young life; he would spend hours there and knew a lot of people. Air Canada gave him and my mother a free trip to Vancouver on the new Boeing 747 (We are talking many years ago, when the 747 was a big deal). In return Paul did a painting of the plane, which was pretty spectacular.
My parents continued to advocate for their son long into their elder years. My mother in fact received the Order of Canada from Governor-General Adrienne Clarkson in 2003 for all of her tireless volunteering and for her work as the founder of West Island Citizen Advocacy, a non-profit organization that matches an advocate with someone who has an intellectual or physical handicap.
All of the name-calling and harassment Paul endured over the years from other children and adults alike did not stop him from pursuing his dreams. He lives on his own with some assistance. At the age of 67, he still walks and takes the bus. He paints and has some friends in the building where he lives. His life is as full as he wants it to be. He’s happy. He has lived up to the legacy he was given with his name.
With the support and help of his community Paul lives a full, productive life, thanks to my parents and those like them back in the day who forged ahead and redefined what it was like to have a disabled child. They made it clear that they and their children would flourish and grow and would not be stopped, but would demand that life for them and for their children would be rich and full and inspiring.
What happened to me on the top floor of my elementary school so many years ago actually feels as if occurred just yesterday. To be ridiculed like that hurts you to the core, and there are so many feelings surrounding that hurt: shame, sadness, guilt, anger. You want it to stop, to end, you want to have a normal brother, you want his “sickness” to go away.
And then you grow up and know that whatever happened in the past helped define who you are today.
Photo by Martha Farley. All rights reserved.