Today, December 3, 2024, is International Day of Persons with Disabilities. This year’s theme is “Amplifying the leadership of persons with disabilities for an inclusive and sustainable future.” If anyone embodied the leadership traits required to ensure inclusivity of people with disabilities, it was certainly Jen Powley.

Jen was another author in my class (2015) for the master’s program in creative nonfiction writing. I remember arriving a day late for second-year summer residency. My daughter had gotten married on the first day of the residency, so I hadn’t left Vancouver until after the reception and had only arrived in Halifax in the wee hours of the morning. 

The next day, we had our mentor groups in the morning. Exhausted by my very late arrival, I took a nap on the lunch break and overslept. So I arrived late to the afternoon large group session and proceeded to go around on the break to say hello to people I hadn’t seen since the previous year. 

When I got to Jen, she didn’t recognize me. This wasn’t a surprise. She hadn’t been in my mentor group the previous year; her quadriplegia (caused by MS) prevented her from socializing much; and my social inhibition never helps with anything. So, I don’t know if I’d ever introduced myself to her.

Approaching her to say hello, I explained that I’d missed the welcome reception the previous day as I’d been at my daughter’s wedding. Without missing a beat or cracking a smile, she said, through her assistant, “And do you think that’s a good reason?” 

Jen was famous for her dry wit. Introducing her at a conference I later attended where she sat on a panel talking about disabilities, her first-year mentor, Lorri Nielsen Glenn, talked about her remarkable ability to, among other things, say a lot with very few words. I suspect Jen had an ability to zero in on the absurd long before she developed MS, but having difficulty finding the breath to speak honed her ability to “level a room,” as Glenn put it, in just a few syllables. 

Powley’s memoir, Just Jen: Thriving Through Multiple Sclerosis (Fernwood Publishing, 2017) takes us from her diagnosis at age 15 through her adult life, boyfriends, difficulties finding work, activism in the disability community, quadriplegia, and finding the love of her life, not to mention earning several academic degrees in her spare time. (The first time I met her, she dryly described her decision to embark on yet another degree as “much to my parents’ chagrin.”)

In a chapter called Engineering Families, Jen wrote: 

“Having hired twenty-seven assistants over eight years, I was accustomed to saying goodbye. Many of my assistants were students who didn’t stay for more than the years they were in school. Others simply moved on. Working one-on-one with my assistants, I came to know them well, but they usually only knew each other through the emails they typed for me. Some of my assistants met at shift change, but if one worked on Fridays and another worked Sundays, it was doubtful their paths would cross. Occasionally, I hosted barbecues for everyone who worked for me. Introducing themselves, they would say ‘Oh, you’re blah-blah at gmail.com. I’ve read your emails.’ The barbecues were meetings of the Jen community. I would say ‘knees’—to signal that I needed to be repositioned—and four people would get up to adjust me. 

“I engineer families out of strangers, and in the time my assistants spend as part of my family, I hope they see how strong someone who appears so fragile can be. I want them to go into the world as doctors, marine biologists, academics, librarians, and artists who know that differently-abled does not mean dumb or ill-tempered. I want them to raise their children with compassion, and if their mother or brother ever needs assistance, I want them to know they’re strong enough to step up and give it.” 

This book should be required reading for high school graduation because it helps readers learn some fundamental life skills: courage, humility, generousity, humour, compassion. At the least, I hope it’s used in some certificate, diploma, and degree programs for people who wish to work with those living with physical challenges. As Glenn wrote of her former student, “Trust this writer; she’s the real thing.” 

Published in 2017, two years after our graduation from the MFA program, Just Jen went on to become a finalist in the Atlantic Book Awards. Jen Powley died on September 17, 2023, leaving an incredible legacy of warmth, wit, and wisdom. I didn’t know her well, but I know she’s missed. 

Other books on disability:

One Strong Girl: Surviving the Unimaginable—A Mother’s Memoir, by S. Leslie Buxton.

I Don’t Do Disability: And Other Lies I’ve Told Myself, by Adelle Purdham.

Scream Therapy: A Punk Journey through Mental Health, by Jason Schreurs.