Still learning, ten years on

Going through my inbox the other day, an email caught my attention. It invited me to participate in a research project examining “caregiver burden” in families of children with medical complexity. I completed the survey, but I also wrote to the research team to ask about their choice of language. By using the word “burden,” were they already shaping the narrative and possibly introducing bias before the study even started?

It’s been a while

It’s been ten years since I started writing this column. There is a current social media trend inviting people to share memories from 2016. According to popular culture, ten years ago, social media was just social (and not political), and Corona was just a beer – and not a virus that inspired a pandemic. Back in 2016, I was invited to write about disability from the perspective of a family impacted by medical complexities and physical disabilities. I worried about how I was shaping my readers’ impressions of disability and felt pressured to choose my words carefully.

Rather than indulging in nostalgia or longing for 2016, I’ve been reflecting on what has shifted for our family and for the wider conversation about disability. For example, in 2019, the Accessible Canada Act (ACA) was passed, a federal law that aims to create a barrier-free Canada by 2040. In 2024, the Canada Disability Benefit (CDB) was implemented to enhance the financial security of people with disabilities living on low incomes. The ACA and the CDB are not perfect, and there’s room for improvement, but these two significant initiatives are helping to change the future for those living with disability in Canada.

How do you say it?

In our own family, over the past ten years, I’ve come to understand how language shapes both what we notice about disability and how we make sense of it. In one of my first columns, I used the words “severely disabled” to describe Rachel and Janneke. Today, I refer to them as living with disabilities that include significant challenges medically and physically. Shifting from a deficit-based lens that uses loaded words like “severe” to a strengths-based approach that uses more neutral descriptors doesn’t dismiss the difficulties. Instead, it shapes an open narrative that influences me as their caregiver and those who meet Rachel and Janneke for the first time. This is what led me to ask about the research team’s study of caregiver burden.

Over 100 columns later, Rachel and Janneke have grown through two wheelchairs and their red porch swings. Emily has moved across the lake to Toronto, and Blake has moved across the ocean to New Zealand. The wheelchair-accessible van is showing wear – and, as parent caregivers, so are Ralph and I.

“Grace, grief and stubborn hope” was the title of my first column, and those ideas have stayed with me through the wear and the wonder over these years, continually re-forming how I share about disability, caregiving and life.