Writing with Grace: A Journey beyond Down Syndrome by Judy McFarlane (Douglas & McIntyre, 2014)

“Grace has changed how I see the world. She has opened my heart in a way I once would have thought impossible.”

What happens when you meet someone who strays from your idea of ‘normal’? Do you push away your unedited reactions and thoughts because that’s not how you like to see yourself? Do you ever tell yourself the truth when no one else is listening?

Judy McFarlane’s frank ability to acknowledge her own flawed humanity is the great power of Writing with Grace: A Journey beyond Down Syndrome. McFarlane, a former lawyer and mother of three, thought herself an open, compassionate person. She had lots of experience working with the underprivileged and excluded. So she was appalled by her unconscious reaction when a friend suggested she help a young woman with Down Syndrome write a book. McFarlane openly admits her failings, her unknown prejudices at the start of the book, and by doing so, she allows the reader to do the same.

“Several weeks passed. I didn’t call [my friend] Madelyne. How could I tell her that our short conversation had triggered thoughts I was ashamed to admit? That Grace would be dull. Possibly stupid. Unpredictable. Maybe dangerous. That I was afraid to meet her.”

With clear honest writing that leads us through the exclusionary history of institutionalization and Down Syndrome, McFarlane weaves the story of her own desire to be a writer with Grace’s. We learn of McFarlane’s personal struggle with her insecurities, her mother’s death, and her father’s dementia. We learn how Grace’s parents migrated from Taiwan to Canada to give their daughter a better life outside an institution. And we learn of Grace’s struggle to be heard, to be seen and accepted, just as she is with that one extra chromosome.

The two women work together for years and become friends who go out for coffee and to the theatre. In Writing with Grace, we witness humanitarian Jean Vanier’s premise of what it means to be fully human: through Grace, who is vulnerable and excluded, McFarlane is given hope, strengthened, and comes to see that they are not that different after all.

McFarlane, who witnesses Grace’s pain when people ignore, patronize and avoid her, often quotes from Jean Vanier’s book Becoming Human: “We are all frightened of the ugly, the dirty. We all want to turn away from anything that reveals the failure, pain, sickness, and death beneath the brightly painted surface of our ordered lives.”

Writing with Grace was short-listed for Canada’s 2015 Edna Staebler Award for Creative Nonfiction.

Writing With Grace book rectangular

McFarlane’s writing process: “agonizing”

McFarlane, who started writing stories, documentaries and nonfiction in her late 40s, has deftly crocheted together several narrative threads in Writing with Grace. But it was far from easy to do. She spent five years researching and writing this, her first book. When I met her at a writers’ conference in British Columbia earlier this year I asked how she had managed to pull together so many different stories.

“Looking back, I’d call the process of writing my book agonizing. For a couple of years after meeting Grace and sensing that I’d stumbled on a story I had to tell, I tried to write an essay about what I was witnessing. I didn’t think I was part of the story. In fact, I didn’t want to be part of the story, but I thought I could describe how Grace, through her writing, was transforming how I saw her. I tried to write that essay over and over, but none of my versions seemed right. Something was always missing.

“The day I accepted that my part in the story was the missing element from my draft essay was really the day I realized I was writing something bigger, possibly a book. For the next three years, I struggled with how to tell, not only Grace’s story, but also my own, and the story of how people with intellectual disabilities have been treated in the past and are treated today.

“In telling my own story, I had to own up to some very uncomfortable truths about myself– that once I’d thought it was close to impossible for Grace to write, and that I’d been afraid that she might get frustrated and angry, maybe even lash out at me. But I felt compelled to keep writing until I had a complete first draft. It lacked a narrative arc and felt disjointed, almost as if I’d written 27 unrelated chapters. Throughout this process I’d tried many times to write an outline, but had never succeeded.

“One day I decided to create an index card for every scene in my book. Then I colour-coded each card according to the four main story lines of my book. I spread the cards out on my table, and in that moment, it was clear what I had to do. I shuffled cards, balancing colour, and creating new cards for the gaps in my story that now jumped out. I was both thrilled and relieved to see a clear narrative arc emerge, finally.”

Writing with Grace is about overcoming rejection, embracing openness and perseverance, and about the human search for fulfillment and belonging. It gives voice to the unheard, presence to the unseen, and shows how our differences contribute to the beauty in our world. If only we let them.

Judy McFarlane, who has received awards in fiction and nonfiction, is working on a novel set in the near future. You can purchase Writing with Grace through Amazon or The Book Depository . Grace Chen’s book Cinderella Princess can be purchased from The Book Depository. For more on Jean Vanier: Weakness at the heart of belonging. If you haven’t read any Jean Vanier, founder of L’Arche, an international network of communities for people with intellectual disabilities, start with Becoming Human, or listen to the podcasts of his original CBC Massey Lectures series. Read any of these and you will come away with a renewed faith in humanity.