The Strength and Fragility of Inclusion

Rob Hudson is a Frank Trippett Advocacy and Outreach Fellow, and Digital Communications Manager 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 Strength and Fragility of Inclusion

In any given January, this is a busy time for advocacy in Northern Virginia. Our annual Advocacy Day draws many of us out of our comfortable places and onto a bus to Richmond to tell our stories to Virginia legislators, for example. I’ll be sharing some of those stories with you in the coming weeks. It’s the beginning of a new year, and with that come new opportunities to step up and make the case for the continued inclusion of our loved ones with Intellectual and Developmental Disabilities (IDD).

The work never stops, of course, but when opportunities like these present themselves, we leap at them. We understand the power of those stories, and how far they can go to reenforce a simple yet frustratingly elusive truth: disability rights are human rights, and people with IDD have a complete, complex and wonderful humanity.

This year seems different, however. It feels fraught with danger. The idea of inclusion for the disability community seems less self-evident than in the past. This might be what “two steps back” feels like.

For those of us who work professionally in disability advocacy, the very topic suddenly feels sensitive, like a third rail best left untouched. Those disability issues and policies have a long history of bipartisanship in Virginia, yet there are times that it begins to feel political. Mostly, I feel like it’s a mistake for disability rights, particularly inclusion and accessibility, to be painted with political hues.

Whether from birth, acquired through physical development or misadventure, or as a result of the aging process (not for the faint of heart, as I’m reminded), disability is the one truly non-partisan part of life.

Disability isn’t easy, but in a way, it’s fair. It doesn’t care who you voted for or what your bank account looks like or the color of your skin. Membership in the disability community is the very definition of fully inclusive. It’s not the same for all of us, of course, and those intersectional conditions matter. But the disability factor? That’s for everybody. No one gets a pass.

As I watch the public discourse on inclusion and our public, social contract with our friends and loved ones in the disability community, I’m struck time and time again by two conflicting thoughts. Inclusion is a fragile idea, easily shattered and ruined. And also, inclusion is a rock, an idea so self-evident that it refuses to fade.

Full inclusion in society, in areas of accessibility and job opportunity, in voting and policy-making, in full participation in the meaningful streams of our world? These are so apparent and so essentially fulfilling that denying them feels shocking to us, like a deliberate affront to the things that make us human. When we watch it happening, it inflicts real pain on those whose membership in this community is nonnegotiable.

And it matters. Protecting Medicaid and the ADA and IDEA, educating our kids and assuring that they have access to public spaces and real opportunities as they grow older, these are vital to this community’s success, and it all feels like it’s in jeopardy.

Like many who advocate for the IDD community, both professionally and personally, I’ve been in an uncertain place where my own advocacy is concerned. And yet, I feel like there’s a way forward, one that we’ve been engaging in and building on all along.

I truly believe that the answer can be found in our stories, and in building and promoting authentic relationships with people with disabilities.

It’s easy to dehumanize a community when held at a distance. We see it all the time on social media, and if I’m being totally honest, I know I do it, too. It’s not a pretty reaction, but it’s human.

I believe, as I’ve believed for many years, that there’s no advocacy I can put forward, no clever turn of phrase or impassioned public speech I can deliver, that carries the effective power of my daughter simply standing up and showing her face and the life she’s made to the world. Watch her and her friends. Learn about their capabilities but also their dreams and their beliefs. Hear from them their frustrations, learn what makes them laugh and what brings them pain.

It’s easy to put down someone you’ve learned to see as a problem. I believe, I MUST believe, that it’s much harder to dismiss someone who has shown you just how human they are.

Am I wrong? Is it more complicated than that, and is the world harder than I’m giving it credit for being? Perhaps. It certainly seems determined to be sometimes. But after all these years and all the disappointments and triumphs that my family has experienced, advocating for my daughter’s humanity and the rights that come with it remains the thing that resonates. It’s the tool that has worked in the past, and as daunting as the present and the future feel, I’m still convinced that good will and empathy to our essential humanity will win in the end.

It’s up to me to keep that discussion going, even when it feels like few are listening. Especially then, I guess. I hope you’ll continue to believe that it’s up to you, too.