‘Disability’ is a relatively new word in my family. Now please don’t start shaking your head and wondering how that can be possible. It was rather intentional. I say ‘disability’ is a new word, as we consciously choose to focus on the concept of ability in our house – mobilizing strengths versus addressing deficits.
It’s not that we didn’t have a keen sense of individual shortfalls – my oldest brother will quickly tell you that his skill in designing propane dryers or repairing cars far surpasses my ability to even assemble a fan. My youngest brother would pay large sums of money to see me attempt to carry sheets of drywall and other building supplies for even half an hour, let alone the full days he often puts in. Overall though, the word ‘disability’ was not common terminology or thinking in our household.
We have only come to really grapple with the term ‘disability’ as my sibling starts to navigate a complex system after 28 years of understanding nothing other than ‘natural supports’.
I imagine some of you might be wondering why? Why access a system that requires labels and a systemic focus on deficits as a way of identifying and allocating supports? Why tap into a ‘system’ when inclusive life has been achieved for 28 years?
To authentically answer that, we would need to acknowledge the vast disparity in opportunities and access to resources that currently exists for individuals experiencing a developmental disability. Most of these citizens live in poverty (with the exception of resources extended by family), accessing ODSP and/or facing limited employment opportunities with even less chances for promotion and growth. Sadly, our key societal marker for success around the treatment of citizens who happen to experience a developmental disability is whether or not they appear to be happy within the limited options provided to them.
To really tackle this tough question, we would have to delve into the personal challenges that arise for my brother and many other citizens – like working without benefits in manual labour positions that wage a toll on one’s body over time. We would also need to deal with the tough reality and fear that we face as family members – that not all of us will live forever. As we age, we have to start planning for safety nets, should we not be present to extend them.
So, we have begun to swim through the tides of disability. A land of assessments, labels, and averages, all designed to compute the number and type of supports someone is eligible for. Some days we fall under the illusion that we have mastered it, gliding across the surface with ease, all of us seemingly intact and still connected to one and other. Other times the giant waves knock us in all directions, and we barely have time to find our balance, let alone really check in with each other.
Do you want to know the really tiring part around swimming through the tides of disability? It is watching the impact on my brother. I don’t think I shall ever forget the moment when someone first labeled him – the impact to his heart and whole being. I won’t soon forget watching him listen to people describe his ‘deficits’ without counterbalancing this with his multitude of strengths, his keen insight, and his valuable wisdom. To be clear, these were good intentioned people, just caught up in an inefficient and demoralizing system.
Regardless, the repercussions are substantial and it takes a lot of love and intention to counter balance those messages.
So we are all learning to swim with the rising waves. I am working on building a boat, something engineered to move in alignment with the ebbs and flows (you do remember my earlier reference to my mechanical skills). Thankfully this boat is both a metaphorical and real one.
I hold steadfast to my faith and commitment, to light the sails on the days we can’t seem to find any momentum and we are lost floating in circles. I consult with others and pull in their expertise to ensure that we are constructing a solid, uniquely designed hull, in which we are working for a brighter future in Ontario – not only for my brother, but for all citizens experiencing the label of a disability. As a family, with my brother at the helm, we work together to ensure that he is setting the course for the future he desires – with possibility serving as our telescope to see the horizon and our beliefs serving as a anchor on the stormy days.
I am confident we will continue to survive and in many moments thrive – for this is the dance of life. If I think about it, as a family, we have always been swimming through the tides together.
Belinda Deenik has been actively involved in helping people unearth their gifts, while exploring the themes of belonging, citizenship and community, for the past 20 years. Whether she is
involved in her current work with two provincial networks, or engaged in her practice as a Life Design Coach and writing in the beautiful Grey Bruce region, she is committed to personally participating in the universal ‘we’ that leads to collective change!