Recently, I took Rachel and Janneke for their yearly visit to our paediatric neurologist at McMaster Children’s Hospital. Visits like this are long, but the length is intentional. We make time to review everything about the girls – emotional, physical and developmental. Though I need a large coffee in hand, I appreciate the comprehensive family-centred…
When I came to retrieve Janneke from school at the end of her first week, three of her classmates were with her. They chattered excitedly and asked, “Is Janneke coming to the back-to-school BBQ tonight?” I loved the interaction with Janneke’s classmates because it illustrated two things: Janneke matters to them, and the perspective they…
“‘God told me to pray for you,’ she says. Her words linger like cloying perfume in a claustrophobic space. ‘God wants to heal you!’ She is undoubtedly thrilled with this opportunity. I’ve been here before. It never ends well.” So begins Amy Kenny’s must-read My Body is Not a Prayer Request: Disability Justice in the…
Can you live on $1169 a month? Ontario’s Disability Support Program (ODSP) is designed to support disabled persons above 18 years of age. Qualifying for the program depends on medical and financial circumstances, and what is offered (max of $1169 a month) hardly meets basic living needs for most disabled persons. In the past year,…
“Good morning, friends! It’s great to see so many faces today.” So begins the daily music singalong sessions with musician (and friend) Mendelt Hoekstra on Zoom. Mendelt creates connections for adults and youth with developmental disabilities across Ontario. Participants attend from their group homes, independent living dwellings and classrooms. Rachel and Janneke attend while at…
Attending church virtually became as common as mandates and rapid tests over the course of the past two years. Churches pivoted and adapted to the changing landscape that Covid-19 created, and many embraced technology to connect people virtually. This has been a saving grace for all of us. During strict lockdowns we were able to…
Most of my musings in this column space are about our two youngest, Rachel and Janneke. I’ve used my caregiver lens to focus on matters related to the girls, mindful of their disability. Yet there are six that make up our family, and my perspective is just one of several that helps to amplify Rachel…
“Today a lady, seeing my walker, offered to hold the door for me. I nodded and wrote ‘thank you’ on the writing board I carry everywhere. She began laughing. It was not a mean laugh, not even intentional, more just a nervous one that lasted the entire time of our interaction as she opened first…
When other children have asked me about Rachel and Janneke’s disabilities, I’ve often used the words, “Their bodies work differently from yours.” My intention in those situations has been to simply acknowledge the difference. But more recently, I’ve been reflecting on how we as adults interpret or even contrive differences. In the beginning “It is…
This month, our Janneke turns 13. Thinking back to her birth, I am reminded of the strong feelings we had then. It was obvious her body would not have the same freedoms as her peers to explore talking, eating and walking. In those first few weeks, we knew that we’d have to redefine (again) life…
On March 13, 1990, an eight-year-old girl, diagnosed with cerebral palsy, joined over 60 adults and families impacted by physical disabilities to crawl up the steps of the Capitol building in Washington D.C. without their mobility devices to physically demonstrate the inaccessible architecture and culture of America. Living in an ableist culture My two youngest,…
“Where’s the lectern in your church?” It seems like a simple question, but Dr. David Pereyra has a profound point to make. Are there stairs on the way to the lectern? How high is it? Who typically reads the Bible at your church? Look around: how many people with disabilities are there? And that’s just…
Let’s bring light to even more doorsteps..
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