At first, writer Judy McFarlane didn’t know what to make of a friend’s request to help a young woman who wanted to write. “Her name is Grace, she’s 23, and she has Down syndrome,” her friend said. “Would you meet her for an hour or so and help her get started?”
This was in 2005 and, recalls Judy, “My immediate reaction was negative. I’d never met anyone with an intellectual disability. How could someone with Down syndrome think about writing? How would we talk about writing? Or talk at all? What if she became frustrated, upset, even agitated? But Grace had said out loud, I want to write. The words I hadn’t been able to say when I was her age. She’s braver than you were, I told myself. And so, with much hesitation and fear, I went to meet Grace.”
The result of their collaboration: Cinderella-Grace, Vancouver Princess, a modern-day fairytale in which Grace cast herself as a feisty princess who marries her prince, honeymoons on the Titanic, has three daughters and becomes a famous spy. Judy helped Grace edit and revise her writing. “Her parents published her book, her church held a book launch, and Grace displayed her book at the World Down Syndrome Congress held in Vancouver, Canada,” she says. “Delegates from over 30 countries took Grace’s book home with them.”
Now, Judy has written a book about her experience, Writing With Grace. Reviewers describe it as “beautiful” and “absorbing and moving” and “brimming with insight that inspires us to re-examine our attitudes towards both ourselves and those we deem to be different.” Here, some key things Judy learned on her journey with Grace:
A person with Down syndrome is a person, with Down syndrome
Before getting to know Grace, I saw her as Someone With Down Syndrome. It was as if the real Grace was hidden by a dark cloak called Down syndrome, making it impossible for me to see her. But as I got to know Grace, I began to see her for who she is – someone who loves to read, likes learning a new language, someone with a good memory. Someone who is not cheerful all the time, who can get annoyed or angry or frustrated like anyone else. Someone who has dreams. And loves going to Starbucks!
People don’t know how to interact with disabled people
One day, as Grace and I read a speech given by a young Japanese woman about what it meant to her to have Down syndrome, Grace blurted out, “My truth is too scary. I like to hide my real truth.” When I’ve been out with Grace, I’ve seen a variety of looks directed at her—unease, discomfort, and even, once or twice, outright hostility. Others appeared not to see her at all. It’s rare for someone to smile at Grace and say, “Hi, how are you?” Grace always seemed to take these reactions in stride. But after she blurted out her words, I realized she had noticed and concluded that having a disability is a scary thing. And she’s right. It takes courage to go out every day into a world that does not always welcome you, that sometimes gives you the message that it wishes you were not there.
There’s no one-size-fits-all with Down syndrome
There’s a tremendous range of abilities for people with Down syndrome. Some are non-verbal, some are able to hold down a job and live independently, some can drive a car, act on TV, or even graduate from university. All of which tells me how ignorant I was before I met Grace, when I made assumptions about what she couldn’t do.
Inclusion is a nice word, but….
There’s no question we’ve made enormous progress in the treatment of those with disabilities over the last fifty years. Laws now provide for inclusion in many areas, such as education and employment. But real inclusion, I’ve come to see, is not just about legal rights. It’s about whether someone feels welcome, that he or she belongs. And that happens on an individual level. Do we look someone in the eye? Do we smile at them? Do we include them in the conversation? In his wonderful book, The Body Silent, Robert Murphy (a former Columbia University professor forced to use a wheelchair because of a spinal tumor) wrote that those with disabilities often stand outside the formal social system, as if they’re in a strange darkness, like an eclipse of the sun or the moon. When I read that, it struck a chord with me. Before I met Grace, to me it was as if those with intellectual disabilities were shadowy, almost invisible.
Fear is a powerful force of exclusion
Jean Vanier, who founded L’Arche, an international organization that provides support and homes for people with intellectual disabilities, has written that we are frightened of those who are different, that fear is at the root of all forms of exclusion. I recently experienced this close to home. Almost every day, I walk through my neighborhood park. I often pass a man who lives there, camped out beside the park caretaker’s building. In all the times I’ve passed him, he’s never once looked up at me. And I’ve never once said hello to him, although I’ve often wanted to. He always seemed so alone, so unreachable. And I was afraid of him, afraid of how he’d react to me.
Yesterday, he was standing right beside the path. I don’t know why, but as I passed, I said good morning. He looked up at me, and for the first time, I saw his blue eyes. A half-smile crossed his face before he looked down again. I walked on, and then I cried. For his loneliness, and for all the lost times when I could have spoken up, when I could have looked him in the eye and smiled.
There are unexpected moments of delight
One day, after Grace and I had been interviewed by a local magazine about her book, we were driving home. Grace asked me to sit in the back seat with her, while her mother drove. As we drove along, Grace turned to me. “I’m a famous writer now,” she said. I agreed that she was, in a way. We drove along for a few more moments, then Grace said, “So where’s the black limousine?”
I laughed and broke the news that most writers never get a black limousine. And then we carried on. Grace would always have her book and nothing could take that away from her. And I knew I would find a way to tell both her story and the story of how she changed me.