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Writing with Grace: A Journey beyond Down Syndrome

by Judy McFarlane

In Writing with Grace, Vancouver’s Judy McFarlane addresses issues of intellectual disability and what it means to be a writer. Although the young woman McFarlane mentors self-identifies as Cinderella-Princess-Grace, the rest of the world is more inclined to see her solely as someone with Down syndrome. Grace reacts strongly to the word “Down,” explaining that while she believes there is nothing wrong with this way of being, a lifetime of discrimination has led her to associate the label with those who want to bully and isolate her. Grace’s focus is on writing a book about romance and, just as importantly, experiencing it. 

Recent literature and practice have brought the voices of people with disabilities to the fore, but McFarlane misses this opportunity, instead affording more authority to medical, legal, and academic accounts of living with Down syndrome. Writing with Grace includes two particularly disturbing scenes in which Grace’s choices are taken away from her. In the first, it is revealed that Grace has recently been sterilized, and in the second she is forced to visit the grandfather who wanted her institutionalized. Her clear lack of consent and agency is skimmed over, and while McFarlane acknowledges Grace’s trauma, she treats both events as inevitable.

McFarlane frankly describes her own stereotypical ideas about Down syndrome, and frames this acknowledgment as a bold exposé of collective social attitudes. But as Grace consistently subverts this caricature of disability, the author’s repetition of her early prejudices becomes jarring. Her offensive language and images of intellectual disability no longer read as self-reflexive,  but instead become evocative of the very discrimination the book purports to challenge. However, McFarlane’s storytelling is transporting; we share Grace’s joy when she launches her book and goes on to distribute it at the World Down Syndrome Congress.

Readers will come to love Grace much the way McFarlane does. This aspect of the narrative goes some way to countering the medical language of diagnosis and defect. Writing with Grace is clearly aimed at those who, like McFarlane prior to meeting Grace, have never considered the lives and experiences of people living with intellectual disabilities.