Building the Family Village

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.

The day I learned that I had been selected as a Frank Trippett Advocacy and Outreach Fellow, I was observing another important red-letter day in my life. It was the twentieth anniversary of the day we received our daughter Schuyler’s diagnosis and learned that our lives were going to be far different than we ever imagined.

The thing I remember with startling clarity about that day in 2003 was the feeling that we were all alone in our situation, and that we were powerless to do much to save our daughter from a tragic outcome. Twenty years later, I know that neither of those feelings were true. And if there’s one thing I’m committed to doing for families like mine most of all, it might just be to dispel that sense of solitude and powerlessness, and to work with them to build our community and become effective advocates for those we love.

I know there are families out there who are having those tough meetings right now, with doctors, therapists and educators. Maybe these parents had questions about milestones not reached, or simply a sense that something isn’t quite right with their child. Or perhaps they’re being blindsided by a diagnosis or an evaluation that will change the trajectory of their lives. I’d love to be able to invite them into a community of like-minded families. Specifically, families like mine and, if you’re reading this, probably families like YOURS.

Sadly, I never had the pleasure of meeting Frank Trippett. Frank and his wife Linda worked closely with The Arc of Northern Virginia to create and nurture a rewarding life for their daughter Hailey. Frank didn’t reserve his advocacy for his daughter. He recognized a need for effective, consistent advocacy on behalf of the entire disability community, and he saw early on the advantage of partnering with The Arc of Northern Virginia to focus those efforts.

Disability advocacy can be challenging, both for self-advocates and their allies. At its heart, it requires a fundamental shift in public attitudes towards a population that has historically been treated as less. Less productive to society, and less deserving of autonomy, happiness and an inclusive world in which to live and thrive. Less human, in other words. Disability advocacy requires a great deal of sacrifice from a community that is already scrambling for resources and opportunities.

When persons with disabilities and their families put that limited time and those scarce resources to work into educating and unifying our community, we’re stronger and better situated to advocate effectively. Together with the support of organizations like The Arc of Northern Virginia, we can become strong voices when standing before community leaders, legislators, business owners, law enforcement, the media, and our neighbors and fellow citizens. And in building our community, we can learn from each other most of all.

If I could go back in time twenty years and talk to that younger version of myself as he walked out of that doctor’s office and into a terrifying future, what would I say? I’d warn him about the hard stuff, because he would need to know and prepare himself.

But I would also tell him how much he was going to love being the father of someone like Schuyler. I’d tell him how she would surprise him and teach him to keep his expectations high. I’d explain to him how her difficulties in communicating would make him, by necessity, a better listener, and that would make him a better father. I’d try to describe the joy his daughter would bring him every day. Most of all, I’d tell him how when he got it right and told her story truthfully, people wouldn’t pity him for being Schuyler’s father. They’d be jealous, and rightly so.

My goal as the Frank Trippett Fellow is to help families like mine focus their energies on effecting real change in the world for those we love who have intellectual and developmental disabilities. Together, we can show our community the worth of every person, and we can ease open some of those doors we’ve found closed to those we love. I’m excited about the possibilities, and I am incredible grateful to The Arc of Northern Virginia and the Trippett family for giving me the opportunity to take on this important work.

The Frank Trippett Advocacy and Outreach Fellowship was established in 2021 by the family and friends of the late Frank Trippett. It was created as a tribute to his years-long advocacy on behalf of people with intellectual and developmental disabilities. The Fellowship seeks to create an enduring legacy to Frank’s advocacy and deep personal commitment to helping other families like his connect to vital resources.

Consider making a financial contribution to The Arc of Northern Virginia to honor Frank’s memory and his commitment to outreach and advocacy.

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