Earlier this week, I had the opportunity to attend, present at and support the annual Empowered Kids Ontario (formerly Ontario Association of Children’s Rehabilitation Services) conference in Toronto. It’s attended by clinicians, physicians, leadership, and families - all looking for connections, new ideas, and best practice for children who live with disability.

I’m also new to the Board of Directors for EKO, and I am excited about the opportunity to support and serve in the days ahead.

At the same time, I need to be honest about the tension that sits within me. I know I am not the advocate for all families - nor do I pretend to be. I know I can’t represent all families; I am a white female who lives with the privilege of community that catches me when I fall, and I am in a traditional relationship with my husband (of 20+ years!) whose mantra is: “We’re in this together.”

I don’t say that to apologize for it, but I say it because it is part of what I struggle with when someone asks me to speak, write or present. I love Sue Robins’ post:

Always, always consider: how can I bring other voices along with me? How can I use my power to create opportunities to share at the podium or around the boardroom table? How do I inform myself by actively seeking out and listening to people who are different than me?

Raising a child who lives with disability makes the ordinary complicated and the norm… well, there’s no such word. Though there are common diagnoses, there are no common children - and each child and family experiences disability with a unique set of circumstances.

Given that, I do think there is a common through line that moves among many of our families and children - one of grief and loss. Though there may not be a physical death, we have to change or bury the dreams and plans that don’t fit with our new reality. Some call this ambiguous loss, and its haunting can take root in our ability to cope, to make decisions and to nurture relationships.

This, in a nutshell, is why parent advocacy is not something to be taken lightly.

As we look for those who have yet to be heard, we also have to find a way to work together with organizations, systems, families and government. It’s hard when hope can be glimpsed but not grasped, when equipments, services and resources are either unavailable or denied. But it is even harder to find a way through alone. I’ve read more than once that “more money will fix this.” I don’t believe funding is the sole fix. We need to foster a provincial culture of belonging - where funding is part of the picture, but so is community, acceptance, collaboration and creativity.

So.. I look forward to possibilities and refuse to give up believing that there is good ahead.

If you are one of those [patient engagement] voices and you are not actively creating space for people who are different from you, then you are part of the problem. (Sue Robins)