In a profound loss to the disability advocacy community, Jen Powley, a champion for the rights of Nova Scotians with disabilities and a fierce critic of systems that bound their lives, has passed away at age 45.
Powley’s death was confirmed on Monday by Carrie Ernst, the director of Independent Living Nova Scotia. She succumbed due to complications stemming from her advanced multiple sclerosis in a hospital the previous Sunday evening.
Over recent years, Ernst vividly remembered teaming up with Powley for a pioneering project. This project aimed to demonstrate how individuals with severe disabilities can lead independent lives, in homes tailored to their individual needs and aspirations, provided they receive adequate support.
In a significant step toward actualizing this vision, Powley converted her apartment into a case study of sorts. Inviting a disabled roommate to live with her, she conceptualized a funding model to facilitate round-the-clock care.
In her latest book, “Making a Home,” Powley outlined the motivation behind her project, voicing her fervent desire to prove that people with severe disabilities did not warrant confinement to nursing homes under a “medicalized model.”
Powley passionately advocated for independent living, underlining that it revolved around freedom of choice, decision-making, risk-taking, owning up to mistakes, and taking credit for one’s decisions.
In her literary works, she vividly showcased the satisfaction of maintaining greater control over one’s own life, even amidst diminishing physical capacities. She was unflinching in her criticism of a system that she described as inherently “warehousing.”
Powley was unwavering in her belief that individuals should inhabit a home they have fashioned themselves, replete with its idiosyncrasies and flaws.
In her book, she recounted a visit to a nursing home at thirty-six, noting that the place bore no resemblance to a home in terms of its odor—neither sweet like freshly baked cookies nor pungent as mouldy towels but sterile like cleaning chemicals.
Powley’s prior book, her 2017 autobiography titled “Just Jen,” echoed her dread of losing her independence, with the specter of institutional care haunting her dreams.
Ernst, in an interview, disclosed that she and Powley had devised a funding model for the province to proffer the apartment as a viable alternative. Its success has influenced the province to transition about 200 young individuals from care homes to more independent living arrangements.
Among Powley’s strong convictions was the right for people with severe disabilities to embrace “informed risk,” inclusive of their sexual lives. In her book “Making a Home,” she firmly stated that “Sex should not only be tolerated but encouraged.”
Her ebullient spirit was contagious, remember her collaborators.
Farzan Hedayat, Powley’s assistant, reminisced about her as someone who never let her physical limitations define her. He likened her to a “gazelle,” echoing the term inked on her wrist as a tattoo. He sized up Powley as a woman who constantly pushed the envelope, her incisiveness and charm making her stand out.
Her books, he noted, provided a rich tapestry of her life along with offering a broader perspective. The last book is viewed as a testament to her life.
Ernst expressed her overwhelming grief at losing Powley. She reminisced about times with Powley when she appeared oblivious to her wheelchair, engrossed instead in their riveting conversations and deep connections.
Powley regarded this human connection as the linchpin for independent living and the key to surmounting the institutional model. Chucking severe disability’s medicalization, she believed, would take moral courage and considerable patience to change society’s rigid mindset.