The Power of Authentic Stories

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 Power of Authentic Stories

Every year, as part of our Advocacy Day activities, we solicit stories from real people with intellectual and developmental disabilities and their families to share with Virginia lawmakers. It’s one of my favorite parts of the event; that window into the lives of the people we serve is incredibly valuable to me not just as an advocate, but also as a human being committed to growth.

The names have been changed.

Seth* is in his early fifties. His challenges, which manifest themselves in mild intellectual disability and some balance issues, are the result of a brain fluid accumulation from before he was born. When he was in his twenties, Seth was diagnosed with type 1 diabetes, requiring an insulin dose four times a day. Seth’s supports are inconsistent, through no fault of his own or of his family’s. His living skills prevent eligibility for a state waiver, and his parents are in their eighties and live about twelve miles away.

Despite these challenges, Seth lives in an apartment and is employed at a local grocery store. He participates, contributing to the life and rhythm of his community. He just needs supports to make that happen.

Twenty-seven year-old Rebecca* also manages type 1 diabetes, along with a variety of conditions including autism and anxiety. Despite those challenges, however, she lives a full life, doing great work here at The Arc of Northern Virginia and as a counselor at a camp for people with disabilities. “I try to be a mentor and good friend in my community,” she says.

Like thousands of Virginians, Rebecca has spent a number of years on the DD Waiver waitlist. She has only recently been deemed eligible for Medicaid, a critical piece of her support due to her healthcare expenses and specialized needs. She hopes to live on her own one day, a desire shared by so many people with disabilities in our community. And like so many others, success will require some supports and accommodations to be in place.

Mark* also works with us here at The Arc of Northern Virginia. Like Rebecca, he is on the autism spectrum. Mark can be easily overwhelmed in social situations and is conflict-averse, and has struggled with food issues in the past. Fortunately, Mark has a strong support system in place, and a variety of interests that keep his engaged, such as vintage currency collecting, interior space design and art.

Most of all, Mark is extremely empathetic, hard working and detail oriented. I’ve had the opportunity to work with him from time to time, and his commitment to the work he does is undeniable. “Having experience navigating programs with a disability, I know firsthand how intimidating and overwhelming it is,” he says. “Not everyone has the amazing support team I do, and I want to help give back.”

Joseph* is also passionate about his advocacy, both as an individual living with a disability (PDD-NOS, a form of atypical autism) and as an individual of color. He values his experience as an intersectional advocate, bringing awareness and offering support to others with disabilities as they seek the supports that give them an increased ability to navigate complicated aspects of independent living.

In particular, Joseph advocates for more programs to help individuals with disabilities navigate admissions to college and complete their degrees through adaptable, individualized plans. “These programs can transform lives by opening doors to higher education and independence,” he says.

When Beverly*’s daughter was diagnosed with a host of conditions including intellectual disability, autism and a behavior disorder, she reacted like so many parents, much the same way I reacted when my family received our diagnosis. Beverly felt fear, and she felt despair. And like most of us who find ourselves in the same position, she quickly moved forward from those emotions, not leaving them behind but rather packing them up and bringing them along for the ride. That’s what we do.

Beverly wanted to plan for a future she couldn’t predict but which she understood would be complicated and fraught with challenges. Getting on the DD Waiver waitlist was an important step, but one with its own daunting challenges; her daughter has been on this waitlist for thirteen years. Supports for families like Beverly’s are hard to come by, and in the meantime, stressors and anxieties mount as the family takes on the challenges alone.

“There are many intimidated, terrified, sleep-deprived special needs parents in Virginia,” she says.

All these stories have a common thread, and it’s not one that I selectively sought out, either. Honestly, I just picked a few almost at random; I could have chosen half a dozen more and the same themes would emerge. People with disabilities have hopes and ambitions and capabilities. They want nothing more or less than to be full participants in the communities in which they live. They need supports to make that happen, and despite the challenges in receiving those supports, I don’t think there’s a convincing argument to be made that those supports represent an unreasonable drag on our society’s resources.

In our national dialogue, there’s a lot of discussion going on about how we should allocate the resources we have. A lot of people are frightened. I say that as if I’m talking about other people, but of course, I’m scared, too. I fear a lifetime of advocacy for my daughter and her own meaningful, inclusive life might just get swept away by forces beyond my control. I understand the fear that lives at the heart of these discussions.

Trying to help a community, a whole population, that’s hard. It’s daunting; it feels too big. And bringing a convincing argument to policymakers and citizens and voters quickly runs into counter-arguments about resources and value judgments about the deserving humanity of faceless, theoretical people.

As we move forward with our impassioned, sincere and sometimes desperate advocacy on behalf of those with intellectual and developmental disabilities, I think we can do our best work if we think of that community in terms of Seth and Rebecca, of Mark and Joseph and Beverly’s family.  The stories we share have real faces and real hearts.

I think of the people I’ve met, and not just their struggles but their hopes. I’ve seen frustrated parents, hundreds of them over the years, but I’ve seen just as many proud ones, too. I’ve celebrated achievements as often and as energetically as I’ve shared frustrations. I want to share those celebrations and those stories with the world, not just to move hearts toward empathetic spaces but also because the world deserves to share in the joy we’ve felt, even in the midst of our challenges.

A complete picture of the human condition must include those with disabilities, not just for what’s hard but also for what’s beautiful and exciting, and most of all for an understanding of what’s possible. We build that complete picture one person at a time.

When you’re ready to share your story for a better world, visit our National Arc portal to sign up.