Advocacy, with Heart

I’d never say that being a parent advocate is easy, but there’s one sense in which it can be relatively uncomplicated. Acting on behalf of your own child involves a certain amount of focus, and to a certain extent, that focus simplifies the process. All that is truly required from me now is to be Schuyler’s strongest advocate, and to make it clear to all involved that in that regard, I’m not going to waver from trying to implement the best possible scenario. I don’t need to balance Schuyler’s needs against budgetary concerns or limited resources or untrained staff, except as part of the process of compromise. I need to be aware of these problems, and I need to be sensitive to how they affect Schuyler’s care, but I don’t need to solve them. And that’s no small thing.

As I begin to transition into the world of professional advocacy, there’s an important shift away from the purely personal for me to undergo, and I suspect it’s not going to be a simple change.

As a parent advocate, my work is very personal, and the stakes are immeasurably high. It doesn’t mean I need to be an ass about it, but rather that my incentive for success is all-encompassing. The challenge for professionals, and for myself should I make that transition, is to bring that passion to the work, but to do so without personal prejudice and opinion, and most of all to listen. I could be a better listener anyway, but for professionals, listening is the beginning of dialogue.

Sometimes I wonder how they walk that line, the people who dedicate their lives to professional support of special needs children like Schuyler. Doctors, therapists, teachers and advocates are out there, working for our kids, and many, perhaps most, come to this work from a place of personal experience. With family, as parents, or especially as adults with disabilities, a great many professionals come to the table with some very personal feelings and experiences.

There’s a balance to be struck, I imagine. We don’t want hysterical, emotional professionals (as entertaining as that might sound), nor do we want dispassion. Experience matters, not so much as a driver of curriculum and the approaches taken with individual kids, because the idea that every kid is a unique snowflake takes on a very different and important meaning when it comes to teaching and treating individuals with disabilities. But personal experience makes us better listeners. It makes us more flexible, and it enables us to think on our feet and, perhaps more importantly, to use our intuition to guide us.

The finest professionals I’ve worked with have been very emotional and opinionated indeed, usually as a result of experience originating in love. What’s important is not the presence or absence of emotion or opinion, but how it’s channeled. That personal connection and emotional investment isn’t a fire that consumes, but rather an energy that directs and inspires. It’s a balance for which I’ll need to strive

To those who count themselves as believers, there is a sense that those who work to make the world better and more fair for people with disabilities are doing God’s work. If that’s true, it’s probably also worth remembering the old saying, the one that tells us that God is in the detail.