‘The sun is duller today’: remembering Jen Powley

Jen Powley, author and advocate for people with disabilities, has died. She was 45.

Powley wrote two books, Just Jen: Thriving Through Multiple Sclerosis, which was published in 2017, and Making a Home: Assisted Living in the Community for Young Disabled People, which was published this year.

Powley wrote for the Halifax Examiner on how landlords in Nova Scotia should be licensed, how the convention centre in downtown Halifax could be turned into affordable housing, and how the former Bloomfield school site in Halifax could be used for non-market housing.

In 2020, Powley ran for Halifax regional council to represent District 7.

Powley advocated for people with disabilities to be able to live outside of institutions, in the broader community. In November 2022, Vicky Levack, 31, a fellow disability advocate who had spent years living in a nursing home, became Powley’s roommate, moving into a second bedroom in her Halifax condo.

The Halifax Examiner spoke with Carrie Ernst, executive director of Independent Living Nova Scotia (ILNS), about her work and friendship with Powley.

They were introduced several years ago by Steve Estey, another internationally known disability advocate, who died last week at age 60. Estey, who served on the board of directors at ILNS, told Ernst that Powley’s family had been spending an enormous amount of money for Powley’s care so she didn’t have to live in a nursing home. Estey suggested Ernst and Powley connect.

“That was the beginning of our love affair, I call it, because at the end of the day, Jen and I truly were more than colleagues,” Ernst said in a phone interview Monday night. “We were friends and we wanted better for the disability community, but we developed such a friendship in that. That’s how our work started and our relationship started.”

Ernst said she spent Monday thinking about Powley’s legacy.

Jen had advocated for a lot of different groups and a lot of different causes and was very involved, but Jen’s legacy was her primary concern that people with disabilities were treated equally. That they were engaged in community and you saw beyond what their disability was. I think her legacy is that we were able to have the hard conversations with government.

I said today, and I kind of chuckled, Jen has left me with the strength to deal with the hard questions. We would be dealing with government and she would ask the hard questions and I would think, “Jeez Jen, why did you ask it that way? Why don’t we see if we can finesse it?” But she was the one who always asked the hard questions and she wasn’t scared of that. I said to her mom today, my promise to Jen in my last text to her was that I wasn’t going to be scared to ask the hard questions anymore.

Eventually, the government committed to having people with severe physical disabilities under the age of 65 moved out of institutions to live in the broader community. Ernst said there are 200 people who will be moving into the community because of Powley’s advocacy.

“Every time Jen and I would connect, she would say, ‘Have you heard anything about the 200 people? What about those 200 people?’ I would say Jen, you have to give them time, but she was asking the hard questions,” Ernst said.

‘She was so witty’

Ernst got to know Powley well beyond her activism and work. Ernst said Powley never lost her sense of humour, even when she couldn’t physically speak anymore and used a spelling board to communicate. 

“She was so witty. She had a dry sense of humour. I was scrolling through texts from last week and we were discussing something and she had made some sort of comment, and I said, ‘Oh, you smart ass.’ That would be my comeback with her, ‘Oh, you smart ass.’ And she would always say, ‘Have you been looking at my ass again?’”

At Christmas, Ernst adopted two kittens, bringing them home where she already has three cats. She said Jen told her, “I think you’re at cat-pacity.” 

“It’s stuff like that she’d come up with,” Ernst said.

Ernst said Powley always kept in touch, including to find out how her family was doing. Ernst said she lost three of her own family members recently, and both of her parents are terminally ill. Her father is undergoing treatments for ALS. Ernst said Powley knew her father’s treatment schedule, and often checked in to see how he fared with his latest round of treatment. Ernst said she is struggling to put into words what Powley meant to her and many others.

“The only thing I can summarize is that the sun was duller today because Jen is no longer with us. She was a beautiful person.”

More than just Jen

Ernst said while the title of Powley’s first book was Just Jen, Powley was far more than “just Jen.”

At the end of the day, what we need to realize is that Jen was larger than being an advocate for the disability community. I think her gift to everybody is the fact that we need to take a moment and pause during our day and not get caught up in the fact that we’re busy, busy, busy. But look at what’s around, appreciate what’s around us, and appreciate the people who are around us.

She was invested in each and every one of us, no matter the burden… today was my day that I started with, ‘You know what? I am going to make one less complaint today.’ Jen’s message is that we need to treat everyone equally and have empathy for everyone around us. That’s the best word I have for her; she was so empathic. I have a hole in my heart, I can tell you that.

‘She changed the landscape for the future’

Powley’s roommate, Vicky Levack, sent along this message about Powley:

Jen Powley accomplished more in her 45 years of life than most people have in double the amount of time. She was an eloquent writer, staunch supporter of refugees with her work with the Rainbow Refugee Network, as well as spending several years as chair of the Ecology Action Centre.

Jen was a strong believer in doing what was right, not only for herself but for others around her. When given a diagnosis of multiple sclerosis at the age of 15, she did not feel sorry for herself as many people in her position would have. She used her considerable voice, even when it wasn’t auditory, to make sure the people with disabilities in this province as well as many others got access to the things they needed to live the best life possible with dignity.

She used her stubbornness and sassy demeanour to light a fire under the people in power and gently show them the way to do their jobs better. After receiving a degree in creative writing at Kings College, she wrote down her life story in her memoir, Just Jen. Giving a real honest, hilarious and sometimes dark glimpse into her life that helped many people see people with disabilities as full human beings, and not just a diagnosis.

In the last few years of her life, she worked with ILNS to develop a program not only to keep herself out of long-term care, but also others. This program will change the lives of others not only now, but for many years to come.

She changed the landscape of the future and for that we are truly thankful. I would say rest in peace, but if there is a heaven, she is already up there causing a ruckus. Thank you, Jen for giving me a home and making it so no one has to feel excluded from their community because of a diagnosis.

With love,

Your roommate with bad taste in art, colleague, and friend Vicky.