What Does Advocacy Mean to You? (by Jeneva Stone)

Members of Little Lobbyists pose with Senator Chuck Schumer on the Capitol Building grounds. [image description: A large group of adults and children, many using alternative mobility, pose in front of bright green summer tree foliage.]

With vaccines on the horizon for teens and younger children this summer and fall, the end of the pandemic may be close enough to grasp. How will you seize the moment as an advocate? These last weeks, I’ve been reflecting on my own plunge into state and federal advocacy, which began in late 2018, the result of my son Rob’s transition from high school to adult life. Rob wanted to be a writer, an artist, and an advocate. He’d participated in a rally against the white supremacist violence in Charlottesville, Virginia, and, apparently, that inspired him to want to do more.

His transition team thought those were fine goals, but none of the adult service providers in our area had programs that did all of those things, nor could they accept Rob due to his complex medical needs. So it was up to me to support Rob’s choices. I was a writer; I knew artists--ok, two down. But advocacy? Certainly, I’d advocated for Rob’s needs for almost 20 years, but I’d never taken that advocacy beyond the personal. But the personal is the political, right?

Rob Stone at a Bethesda protest against the violence in Charlottesville, Virginia. [image description: A young white man wearing sunglasses is seated in a wheelchair. He holds a multicolored, hand-painted sign, “HONK! 4 LOVE".]

So I reached out to Little Lobbyists, among other groups, trying to find a place that would help make Rob’s voice (and mine) heard. It was Little Lobbyists parents who taught us how to tell our stories--storytelling is the beating heart of activism, a means of bringing passion to the sometimes cold rationales of the policy table. I discovered that Rob’s voice, my voice, and YOUR voices matter.

In my feature for this blog, Share the Journey with Jeneva, I ask people to define advocacy in a single sentence. I ask because I want to get to the heart of what advocacy is and can be, beyond any one particular issue. I want all of you to understand that anyone can be an advocate--you show up, you tell your story. 

How would I define advocacy in a single sentence? Advocacy is a willingness to go outside your comfort zone, stand up or roll up, and be heard.

What does it mean to you? Here’s how the people I’ve interviewed have defined advocacy:

Laura Robeson: Advocacy is using your story and experience to impact change.

Liz Randolph: Advocacy opens the door to a better world in which we all listen to and learn from each other. 

Ken Capone: Advocacy is the empowerment of people to obtain the knowledge to achieve their goals and dreams in life.

Jamie Davis Smith: Advocacy is a way of ensuring your rights and needs are not overlooked, and a way of "bending the arc towards justice," as Martin Luther King, Jr., said. 

Alice Wong: Advocacy is telling your truth and caring for others. 

Meeka Caldwell: Showing up with your presence, voice, and knowledge for the ones that need it the most. 

Amy Silverman: Living your truth out loud for all to see. 

Sophie Stern: Advocacy means when you stick up for someone. 

Lauren Shillinger: Sharing your story can turn adversity into advocacy, and creating change can make a big impact in your community!

Nathan Spoon: Art matters as a form of advocacy because it shares the cultural life of disabled people. 

Ande Kolp: Speaking for yourself (or assisting someone to tell their story)--it is helping people to see what you see, what you believe is needed in the community, and collaborating to accomplish something that will benefit us all--like inclusion, human rights, and in the case of the HAA, community for ALL.

Maya Brown-Zimmerman: Advocacy is using your lived experiences to affect change, whether it’s change on a small level (for your life, or your child’s life), or for a broader community.

So let’s get back out there, as vaccines and our schedules permit, and tell our truths about health care, Medicaid, Home and Community-Based Services, disability rights, and much more!

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Jeneva Stone is the blog manager for Little Lobbyists. Share your story with us on our blog: email Jeneva!