In light of the current Supreme Court Nomination hearings and thus the potential influence on policy if Judge Amy Coney Barrett were to be confirmed, we thought it important and timely to invite activist Elena Hung to share her story. She is the co-founder and executive director of Little Lobbyists, an advocacy group speaking up and out for children with complex medical needs and disabilities. Her words are personal, full of wisdom, and a call to action for all of us to vote for, as Elena so accurately states, "leaders who value family and the health of our country."
Listening to our loved ones—particularly our children—laugh and be together are the best sounds in the world. The sounds of togetherness. The sounds of happiness and health. The sounds of safety.
In the coming weeks we will hear and read countless stories about what’s at stake in this election. The passing of Justice Ruth Bader Ginsberg has, without question, heightened what’s at stake for our country. It’s about knowing that the air we breathe and water we drink is clean—and will continue to be for future generations. It’s about protecting the rights of those with disabilities and ensuring they can live with independence and equal opportunity. It’s about having access to health care and protections that prevent discrimination if you have pre-existing conditions. It’s about the safety and security of our families. And for me, the stakes are both high and extremely personal.
My daughter Xiomara is the joy of my life. Not a day goes by that I don’t count my blessings for our access to quality, affordable health care and a community that loves her. As I watch her playfully sneak up on her big brother and wrestle him, I can’t help but marvel at the long road we took to get here. She spent the first five months of her life in the Neonatal Intensive Care Unit. We had countless appointments with over a dozen medical specialists and intensive therapy sessions that consumed our days. Xiomara was diagnosed with a number of serious medical conditions affecting her airway, lungs, heart, and kidneys. She uses a tracheostomy to breathe and a ventilator for additional respiratory support. She receives all of her nutrition through a feeding tube, and a wheelchair to explore the world around her.
The ongoing worry of whether this world is going to accept her like I do will never go away, but thanks to her brilliant doctors and the insurance that helps us afford her medical care, my daughter has grown to be a six year old who is happy, funny, kind, clever, and a little bit naughty. Xiomara just started first grade and loves to play and act out scenes from her favorite cartoons.
I know my family is not alone. There are millions of Americans with complex medical needs and disabilities all across the country. And, there are caregivers like me who advocate for them daily to ensure that they receive the medical care and services they need to survive and thrive.
Aran Goyoaga on Cultivating Love in the Kitchen + Meringue Cake with Roasted Apples From Cannelle et Vanille Bakes Simple
"Set a humble table and eat beautiful simple food. Nothing has to be fancy. When you make yourself comfortable, your guests will feel comfortable."
I co-founded Little Lobbyists, a family-led group advocating for kids with complex medical needs and disabilities in 2017 after I watched Republicans vote on bills that would take away the health care protections that millions of families depend on—protections for those with pre-existing conditions, bans on annual/lifetime limits, and Medicaid expansion. We showed lawmakers the faces of people affected by the decisions they make. We brought our disabled children with us to Capitol Hill and hand-delivered hundreds of stories about kids with complex medical needs and disabilities from across the country to their Senators’ offices.
We were successful in stopping their bill from being signed into law, but President Trump and Republicans took the battle to court—where the Supreme Court will now decide whether to strike down the Affordable Care Act and protections for those with pre-existing conditions just a week after the election.
It is clear the fight to preserve protections for pre-existing conditions is on the ballot. The next Justice that goes on the Court will decide whether or not 135 million Americans—including my daughter—will still have protections despite pre-existing conditions. How cruel does one have to be to try to strip those protections in the middle of a pandemic? It’s unimaginable.
Fortunately, we have the chance to elect leaders who value family and the health of our country. Like me, Joe knows what it is like to be at your child’s bedside in the hospital praying that they survive. He knows what it is like to be a caregiver and balance family and work. He knows what it is like to get up every day to fight for those you love, including our loved ones with disabilities. And he will fight for our loved ones like they were his own. That’s why Little Lobbyists proudly endorse the Biden-Harris ticket in this election.
There is not a single thing I would change about my daughter, but there are a million things I would change about this world so that it would be worthy of her. That change begins with the election of Joe Biden and Kamala Harris.
For the sake of our children, and all American families like ours, we must turn out to vote. It’s not too late to register to vote and make a plan to vote early at iwillvote.com. Vote for Joe Biden and Kamala Harris on November 3rd.