“When we are kind, it makes us happy. It makes us think less about ourselves.”
Jonathan Reckford, Our Better Angels, (2019)
In the waiting room of a small clinic, where I await patiently for my wife to come out from her yearly medical check-up, I hear a commotion going on in a room designated for blood testing. A teenager is shrieking and saying unintelligible words. The teenager’s mom is trying to calm him down with soft voice practiced by years of experience. There’s no irritation − only understanding and love.
While I am dressing up for my early morning tennis in a men’s changing room of a community recreation complex, a dad and a son come in. The son weighs heavier and is a little bit taller than the dad. Just by merely looking, I can sense there’s something wrong with the son. But like the mom in the clinic, the dad displays the same kindness and patience towards his son. He is helping his son get undressed for their morning swim. After I finish my tennis game, I see them again at an ice rink skating around to a Shania Twain’s song, Forever and for Always. That is quite fitting don’t you think?
It’s hard to imagine how these two parents turn around and become more accepting of their children’s disabilities. David Flink, in Thinking Differently: An Inspiring Guide for Parents of Children with Learning Disabilities (2014), wrote: “For young or first-time parents, the news can be devastating. Learning how to accept that your child is ‘different’, especially when he looks every other kid on the playground is a tall order and may take time.”
Disabilities are long-term and permanent. Furthermore, people with disabilities are marginalized in our society. That’s why in August 1964, Jean Vanier set up a house in France to bring men and women with intellectual disabilities out of the degrading conditions of institutions. He called the place L’Arche. There are now 149 L’Arche communities and 14 projects in 37 countries around the world. On May 7, 2019, Jean Vanier passed away at age 90. However, in February 2020, an internal report conducted by L’Arche staff concluded that Vanier sexually abused six women in Trosly-Breuil, France, between 1970 and 2005. A devastating blemish to a life lived with kindness and well-intentioned cause.
The men and women with disabilities, though, are safe. Unlike the death of 19 people with disabilities and the injury of two dozen more in Tsukui Yamayuri-en residential centre in Sagamihara, Japan on July 20, 2016. A former care home employee, who committed the crime, was just recently sentenced by a Japanese court to be hanged. During the investigation and trial, Satoshi Uematsu justified his action by insisting that he was just aiding the world by getting rid of burdens.
Here in Canada, the famous Latimer case comes to mind. On October 24, 1993, Robert Latimer, a wheat farmer of Wilkie, Saskatchewan, decided to end the life of his daughter, Tracy, who was born with cerebral palsy. After 12 years of surgeries and constant pain, Robert thought by ending Tracy’s life he was performing an act of mercy. The court disagreed and convicted him of second-degree murder and sentenced him to life imprisonment with no parole for 10 years. In December 2010 he was granted full parole.
In spite of his sexual failings, it’s hard to dismiss Jean Vanier’s effort of radically changing our hearts and minds towards our treatment of the weak, different, inferior, or vulnerable members of our society. He laid out all his thoughts in his book, Becoming Human (1998). This book, he said, “is about the liberation of the human heart from the tentacles of chaos and loneliness, and from those fears that provoke us to exclude and reject others. It is a liberation that opens us up and leads us to the discovery of our common humanity.”
It’s hard to relate when we don’t really experience it. So I searched the Pickering Library for a book that would, once and for all, open my heart and mind to the difficulties of parents with disabled children. I ended up with Ian Brown’s The Boy in the Moon: A Father’s Search for His Disabled Son (2009). This book won two awards in 2010: the British Columbia’s National Award for Canadian Non-Fiction and the Charles Taylor Prize, a $25,000 prize for excellence in literary non-fiction.
He opened up his book with the following words: “For the first eight years of Walker’s life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial.
“The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.”
His son Walker was born with extremely rare form of cardiofaciocutaneous syndrome (CFC, for short or orphan syndrome). According to Ian’s research, CFC “shows up no more often than once in every 300,000 births, and possibly as rarely as once in a million.” When Walker feels discomfort or irritated or wants to communicate something, he starts hitting himself. A teacher once told Ian “he’s a genius for finding ways to hurt himself.”
Walker has a lot of deformities. Here’s a few phrases how Ian describes his son: “his sight is poor; low-set ears; body of an old boxer; face heavy in the lower jaw; no chin; curly hair, but no eyebrows; wide nose; thick lips; square teeth, yellowed from the formula, but undecayed; hands like gloves, huge for his size.”
Ian has a huge help from Olga, a Filipina caregiver who also provides maid service. Olga’s story is typical for most Filipina caregivers who came to Canada for better economic opportunities. “Only at night and in the morning and on weekends,” Ian wrote, “when she went home, did the house feel less secure: we were on our own again, Olgaless. Nothing fazed Olga – not screaming nor illness nor filth nor disaster.”
As I try to read the book from cover to cover, my thought comes to one thing: I’m so fortunate not to carry such a heavy cross in my life. I can say that Ian deserves a gold medal. But I don’t think he will accept it. The struggles, the pains, the costs, the sleepless nights, the fights, the worries, and so much more, these are existential burdens not easily wipe out by a piece of metal.
There’s so much more going on between the father and the son. And Ian describes it eloquently in the last page of his book: “I was already as close as I could be to him; there was no space between my son and me, no gap or air, no expectation or disappointment, no failure or success: only what he was, a swooned boy, my silent sometimes laughing companion, and my son. I knew I loved him, and I knew he knew it. I held that sweetness in my arms, and waited for whatever was going to happen next. We did that together.”
Pure love indeed!
9 January 2021
