The need for our country’s leaders to listen to our voices and defend our lives is more urgent than ever. The next few months will determine the future of the American people—and the power of our storytelling will shape our politics as we near the November elections.
I am the mother of an amazing four-year-old with complex medical needs, and storytelling has been one of the primary social acts keeping her alive. In the past year, I have seen firsthand the transformative power that our storytelling has on our politics.
In response to the ongoing threats to repeal health care laws, I began bringing my daughter Xiomara to Capitol Hill to meet with members of Congress. Along with several other families, we showed up to talk about what access to affordable, quality health care means to our children with complex medical needs, and what is at stake without it.
Those first visits quickly led to the founding of Little Lobbyists, a group of families who believe that sharing our personal stories has the power to change the world. As the threats to our health care persisted, we continued to show up with our children -- and all their medical equipment and emergency bags in tow -- to share our experiences with as many people as possible.
Supreme Court Justices and Congressional lawmakers are tasked with protecting our lives, but they too often do not know our lives. As members of the disability community, we are among the millions of Americans whose daily struggles and experiences often go unseen and unheard.
Since I began sharing my story publicly a year ago, I’ve heard from countless families like mine who have children like my daughter. Families who have spent more than their share of time in hospitals and doctors’ offices. We are families who have developed a profound appreciation for life, because we have been too close to the other side.
In early January, a mom from Texas reached out to me. Laura Leeman and I hit it off right away, talking about our kids’ medical history with the rote candor of anyone who has been asked this question too many times. We laughed and cried, cursed the ongoing threats to health care, and vowed to continue fighting for our kids. We talked about visibility and why showing our kids to the world was necessary. We encouraged each other to keep telling our stories to put a face on health care. And then, Laura told her story in the most spectacular fashion that I have witnessed.
She invited Rep. Beto O’Rourke into her home in Colleyville, Texas to meet her son Vic. And together, they invited the world into their meeting via a Facebook Live video. I have watched that video countless times.
As Vic is receiving his breathing treatment in his bed, surrounded by his doting parents and life-saving medical equipment, Laura explained his medical history and needs to Rep. O’Rourke. I watched with giddy familiarity as that could have been my daughter Xiomara’s bedroom, with the pulse oximeter and oxygen concentrator and nebulizer. I thought of all the families who will find this bedroom and this experience familiar. Like me, the families will see their story being told and heard.
Four months later, I went to meet with Rep. Beto O’Rourke at his office in Washington, D.C. We talked about my daughter Xiomara, my work with the Little Lobbyists, and his visit with Laura’s family.
I sat across the table from a man who vividly remembered Vic and admitted to being changed by their meeting. The Congressman spoke with surprisingly specific details, recounting the movement of Vic’s cough assist and the sound of the nebulizer machine, and the way the family lovingly cared for each other and the enormous joy that Vic brought his parents.
I watched him sincerely ponder the question Laura posed to him: what would Vic do without his life-saving medical equipment and supplies?
I wondered how many of our nation’s leaders know a child like Vic or Xiomara.
In just the past few months, we have seen a direct attack on the 130 million Americans with pre-existing conditions, renewed attempt to repeal the ACA, the finalization of junk insurance rules, and a 2019 budget proposal that prioritizes cuts to life-saving programs like Medicaid.
When our leaders attack our health care, they attack my daughter’s life. I am angry, I am frustrated, I am scared—and I need our public officials to understand that.
Every time a lawmaker hears the lived experience of another American, they begin to understand the realities that we live through every single day. Because of Laura telling her story, Rep. O’Rourke now better understands the reality that she faces every day.
In these uncertain times, as we near the November elections, please, share your story and use your platforms to amplify the voices of others. Remind your lawmakers that there are people behind their policies—and we are living the consequences of their votes every single day.
Our voices and our stories truly matter, and they going to save our lives.
Contributing Editor: Elena Hung
President and Co-Founder, Little Lobbyists
Elena Hung is the Co-Founder and President of Little Lobbyists, a parent-run organization that advocates for children with complex medical needs. The families collect and share health care stories from around the country in efforts to educate and raise awareness. They meet with legislators and their staff on Capitol Hill and bring their own children on these visits to help put a face to the lives affected by health care policy. Elena is also a practicing lawyer in DC.