Ask for help

If you’re new to my column, two of our four kids, Rachel and Janneke, are disabled teens who live with significant needs that require complex care. Recently, the dietician assigned through the home and community care agency asked for updated weights of the girls. When Rachel and Janneke were younger (and lighter), I would hold them while standing on a bathroom scale.

Hunting for a deal

I needed a new solution for our home, now that the girls are older and heavier. The dietician’s suggestion? Search large game hanging scales for hunting and fishing on the Amazon website. (Lest you think this column is an endorsement for the multinational tech company, I assure you it isn’t.) What we needed was a patient lift scale that would attach to our girls’ slings on our lift system. Yet, if I searched patient lift scale and then searched large game hanging scale on Amazon, there was a significant price difference for the same design. The medical version started at $300 and the hunting and fishing version started at $30. We now own a bright orange hanging scale for our two… dears. 

Power, poverty and privilege

The costs associated with medical needs, such as accessible equipment and prescribed medication, exceed the capacity of affordability for many who live with disability. Our family is privileged to figure out the cost of a short cut, such as a hunting and fishing scale, that won’t compromise our girls’ care. Yet, almost 30 percent of Canadians live with disability and not all can afford simple workarounds to manage their care. According to recent data from Disability Without Poverty, 41 percent of people who live in poverty in Canada are disabled. Not being able to access proper resources and medication means compromising health and wellbeing. 

In September 2020, the federal government announced plans to introduce the Canada Disability Benefit (CDB), aimed at alleviating poverty and empowering the financial well-being of individuals with disabilities. This spring, the 2024 federal budget introduced the CDB, and it was met with concern by disability advocates. The support allocated through the national benefit will only offer a small amount per month to some but not all of those needing support. Interestingly, in the same budget, there was also a commitment to consultations around caregiving. Just as advocates have been proposing a national disability benefit, there has also been a push to create a national caregiving strategy. 

Hearing and responding

I’ve been reflecting lately on what it means to ask for help. Just yesterday, as I left my grocery store, there was a man with a visible disability, asking for spare change. He bravely stood in the rain and offered eye contact and a smile. I’m mindful that our motivation to help (or not help) is influenced by what we see or what we’ve experienced. I acknowledge the complexity that comes with responding to such needs, but I also know the weight of these very real concerns can’t be dismissed or ignored.