This summer, I'm participating in a blog hop. The first topic of discussion is 'My Connection to Disability'.
It was 1972 and I was seventeen. I remember it was hot and humid on the day that the loudspeaker crackled to life and called my name, telling me to go to the office immediately. I remember feeling a bit special. I recall my heart beating a little faster with a sense that life had picked me out for something out of the ordinary on this dreary day at school. The sun streamed through the principal's window. A bluebottle buzzed against the glass. "Your father has had a stroke. He's in the hospital." I don't remember what happened after that, except that I knew I'd made a big mistake wishing so hard for something large, romantic and possibly catastrophic to happen in my small town life.
My Dad suffered two more strokes before he passed away in 1975. I didn't know then that our son would be born in 1988 with severe cerebral palsy. I've often reflected on how witnessing my Dad losing his speech and his mobility would give me the first rudimentary tools to give care as a mother and powerful advocate for our son. From my Dad, I learned to listen more carefully. I caught a glimpse of loving someone wholeheartedly by finding moments that could build bridges across abilities.
For most of our son Nicholas’ life, I looked after him myself. But now that he has full-time care in a home away from us, I have the opportunity to reflect on our family experience and what it may mean to the rest of society. It's the big questions that interest me. For example, I wonder if, when presented with a tax bill that includes some of the costs of my son’s care, a taxpayer in another province will ask “Why should I care? Why should I pay?”
To that taxpayer, I want to answer that to give and receive care is good for all of society. It is a life-enhancing activity. And I want to explore the wider consequences of saying, “I don’t care and I won’t pay”.
Reflecting on my personal experience has prompted me to ask myself, “What do I want my family to be? What do I want my community and my country to be? What is the relationship between someone who is not perceived as contributing to the economy and the state? If an ethic of independence is not a worthy aspiration, what is? How can we shift attitudes towards dependency for the benefit of seniors, people with disabilities and their families?”
These questions do not only relate to disability – they relate to mothers and children, the chronically unemployed, the aged AND people with disabilities. They relate to anyone in the community who is vulnerable to social exclusion and in need of extra help from someone else to thrive. These questions probe the heart of who we are and how we care for each other in families. As Roslyn Carter said, "There are only four kinds of people in the world: those who have been caregivers, those who are caregivers, those who will be caregivers and those who will need caregivers." This is a discussion that impacts everyone.