The Many Hats of Advocacy

Rob Hudson is a Frank Trippett Advocacy and Outreach Fellow, and Community Outreach Associate for The Arc of Northern Virginia. Rob’s advocacy on behalf of his daughter, Schuyler, who has a rare disorder called polymicrogyria, has guided his personal philosophy for the past twenty years.

I’ve been thinking lately about advocacy from a number of different perspectives, all of them relevant and important to me, and no doubt to most of you as well. When people talk about the different hats they wear in their lives, I suppose this is what they mean. For those of us in the disability world, there’s an added wrinkle: we have to be capable of wearing those hats all at the same time. For me, at least, the challenge and the reward comes from making them all work together.

My primary hat, I’m sure, is the one I wear as a parent advocate. It’s the one I’ve had on since the day my daughter was born, although it didn’t become noticeable to me until she was diagnosed with a rare brain malformation called polymicrogyria. After that, my hat changed pretty dramatically. Imagine taking off your baseball cap and replacing it with the hat that Cap’n Crunch wears. It’s big, it’s heavy, and it feels like no one else in the world is wearing one like it. I’m not going to lie; after twenty years, that hat is pretty worn now, scuffed and dented and maybe even slightly scorched. But it’s still my favorite; it fits me the best of all.

The next hat in my collection might best be described as my professional hat. It’s a role I guess I first took on when I began writing about my life with Schuyler and the challenges she faced as a very different little girl. It changed over the years, became a little more polished and a little less confrontational. This is the hat I wear in my staff position here at The Arc of Northern Virginia. This role has been a long time coming, and while I’m not sure how well it fits just yet, I’m honored and proud to wear it.

There’s yet another hat for me now.

The older I get, the more I feel it. My back hurts a little more when I get up in the morning, the handful of meds I take when I get to the sink gets larger, and the face that looks back at me in the mirror is a little less forgiving. I have an actual medical team now, including a cardiologist, and the conversations we have aren’t a lot of fun. One day, and probably sooner than I would like, I’ll truly join the disability world myself. In some ways, I’m already there and have been for a while.

This is the relationship with disability that waits for us all (if we’re lucky), but it’s the one we don’t like to talk about very much. And yet, I feel like it might be the perspective where I have the most to learn, so maybe it’s the one where I still have the most to offer as an advocate.

I’m not the first person to come to this realization. Indeed, there’s a narrative in some parts of the disability community that separates the population into two groups: those who have a disability and those who don’t… yet. I suppose we become truly aware of our nondisabled privilege when it begins to slip away from us.

This sensation, the ticking of a clock that sounds suspiciously like the beating of my own heart, brings with it a kind of urgency. It’s the same sense that bedevils so many of us who advocate for our children and loved ones with disabilities. Our work is tempered by the very real sense that we need to get this right, at long last. We need to reach a point where our loved ones with disabilities can go forward without us, because that time is coming. Tick tock, tick tock. Thump, thump, thump.

Like any other parent of a child with a disability, I worry about what happens to my daughter when I’m gone. It’s the closest thing to a universal experience for parents like me. The comfort I get in these moments of troubled reflection comes from the relationships I’ve forged over the years, and the professionals I have come to know who stand ready to be a part of that work.

The good people I work with at The Arc of Northern Virginia are professionals; indeed, they’re among the very best in their field. I deeply appreciate how they wear the multiple hats of advocacy, the professional and the personal alike.

And of all the things I value about my fellow advocates in this world, the one that brings me the greatest comfort as a parent, is that when we’re gone, whenever that is, our children won’t just be set adrift in the world. That might just be the thing that matters the most to parents like me, and like YOU.