The Importance of Speaking Up
Editor’s Note: The Center for Consumer Engagement in Health Innovation at Community Catalyst (The Center) is currently accepting nominations for its second annual Speak Up for Better Health Award. As the Sept. 6 deadline approaches, we’ve asked 2018 winner and 2019 Better Health Award judge Elena Hung to share the story of her advocacy journey.
I am writing this as my 5-year-old daughter Xiomara is sleeping peacefully next to me after a long day of fun and games. She is the joy of my life, and while we have much to celebrate, I recall a time when it wasn’t so easy.
Fifteen minutes after she was born, Xiomara was rushed to the Neonatal Intensive Care Unit where she remained for the next five months. She’s been diagnosed with several medical conditions affecting her airway, lungs, heart and kidneys. She uses a tracheostomy to breathe, a ventilator and supplemental oxygen for respiratory support, and a feeding tube for all of her nutrition.
I am thrilled to share that Xiomara is thriving today and this is due in great part to the excellent care she has received (and a little bit of luck). I am vividly aware of and profoundly grateful for the difference access to quality, affordable health care can make – and this awareness is how I became an accidental activist.
Two years ago, I watched the U.S. House of Representatives vote to repeal the Affordable Care Act, a law that has protected so many kids like mine – children with complex medical needs and disabilities.
In a moment of hope and desperation my friends and I gathered at a kitchen table after the kids went to bed. We knew we had to speak up and we made a plan to take our kids to Capitol Hill so senators could see the faces of those who would be affected by their votes on health care. We wanted them to know that our kids with trachs and feeding tubes and rare syndromes and medical records a mile long are just kids… who need health care. We asked families like ours across the country to share their stories and we offered to hand deliver them to their senators. And share, they did.
One story quickly became one hundred, one meeting turned into many, and one press conference led to countless rallies and media interviews. Before I knew it, Little Lobbyists was born.
Since that late night at the kitchen table, I have been surrounded by parents just like me, who understand what it’s like to care for a medically complex child and who know what it’s like to drown in the loneliness, day after day, before we found each other.
For the past two years, I didn’t feel lonely at all. Not one bit. I didn’t feel lonely in the halls of Congress, or at press events, or at meetings where congressional staffers were brought to tears.
I have marched and rallied alongside hundreds and hundreds of people who believe what I believe: that health care is a human right. I have been surrounded by the love and strength of families who have walked in my shoes and felt my fear and shared my hopes. I have been inspired and supported by health care heroes who have been doing this work for decades.
Here’s what I know: none of us do this work for recognition. We do it for our kids, our families, our communities. We do it because it is the right thing to do. And we have to acknowledge that what we do matters. It matters for the people we love and the lives we save.
I was honored and humbled to receive the Speak Up for Better Health Award last year. It felt a bit funny, to be honest, to be recognized for fighting for my baby. But the truth is, this fight is so much bigger than me or my daughter, and I am constantly reminded how important it is for all of us to continue to speak up.
As a judge for the Better Health Award this year, I am looking forward to learning more about my fellow advocates across the country who are doing this important work and making their voices heard. This is how we change the world.
Elena Hung is the President and Co-Founder of Little Lobbyists, a family-led organization that advocates for children with complex medical needs and disabilities.
Her opinion pieces have been published in the New York Times, Baltimore Sun, Vox, HuffPost, and other publications. She was honored with the inaugural “Speak Up For Better Health” award by the Center for Consumer Engagement in Health Innovation at Community Catalyst and recognized as “Ally of the Year” by the Autistic Self Advocacy Network (2018). She is a frequent speaker at conferences (including Families USA, Netroots, RESULTS International, Family Voices), as well as press conferences and rallies. She has testified before Congress twice on health care matters.
Elena is also one of the national co-chairs of Health Care Voter, a campaign holding elected officials accountable for their votes on health care.