At the Capitol With Those for Whom Last Night Mattered the Most
When I arrived at the Capitol at 11 pm on Thursday night, there were roughly 300 people protesting in the dark. They were young people, people in wheelchairs, parents with their kids, and seniors. They joined the hundreds of Americans who put their own bodies on the line over the past weeks to stop Congress from repealing the Affordable Care Act, decimating Medicaid and defunding Planned Parenthood.
Protesters went up to the mic one by one to give testimonials. Few of them had intended to do any public speaking Thursday night, but the long minutes before voting needed to be filled somehow. “This isn’t about other people,” a man in a wheelchair told the crowd matter-of-factly. “I will die if this bill passes.”
Another protester, Steven Stewart, spoke about his mother raising him and three siblings on welfare. He said he’d lost two of his partners, and lost his best friend to cancer. “You’ve forgotten what it’s like to be a human being,” Stewart told Republicans inside the building. “They don’t know what it’s like to go to the bank and hit ‘balance.’ They just hit ‘withdraw.’”
As Senator Al Franken spoke to protesters, Elena Hung stood on the grass off to the side with her 3-year-old daughter, Xiomara, who was passed out in her stroller. Tubes tangled around her legs and led out of the stroller to an oxygen tank. One of her shoes was missing.
Why was it important to be protesting outside the Capitol with her 3-year-old at midnight on a Thursday? “It’s everything. My kid’s right here,” Hung said, then paused to think of what else to say. “It’s everything.”
Xiomara spent the first five months of her life in a Neonatal Intensive Care Unit. “169 days to be exact,” Hung told me. She rattled off Xiomara’s medical details with the rote candor of any parent who’s spent too much time in children’s hospitals: Xiomara has issues with her airway, lungs, heart and kidneys. She depends on a tracheostomy to breathe, along with a ventilator. She gets all her nutrition through a feeding tube.
“I would also describe her as a typical 3-year-old,” Hung told me. “She’s going to school this fall. She loves Sesame Street. She loves going to the playground. She loves going to the library. She’s a kid. She’s just a kid.”
In June, as news came out that the Senate might fast-track their Obamacare repeal bill, Hung decided to do something. Over birthday cake in her friend and fellow “trach mom” Erin Mosley’s kitchen, Hung came up with the idea for Little Lobbyists. Over the past month, the group has been everywhere on the Hill, storming the Capitol and forcing lawmakers to confront children with complex medical problems.
“We said, you know what? You’re in Louisiana, you’re in Ohio, you’re in Nevada. Send me your story. I will hand deliver this to your senator. I will bring my child so they can see what a child with disability looks like, and what is possible. And that’s what we’ve been doing for over a month now,” Hung said.
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