What unfolded in Congress last week wasn’t just political strategy — it was a performance. A performance where many were aware of the potential damage this bill could cause, and still chose to go along with it anyway.
The new tax-and-spending bill is massive, packed with everything from tax breaks to military funding. But hidden inside are deep cuts to Medicaid — the very program that supports families like mine. It’s a lifeline for children with disabilities, for the elderly, for rural hospitals. And yet, that lifeline was negotiated away like a bargaining chip in the final hours before a holiday break.
What struck me was how many others clearly wrestled with their conscience — and still voted yes. They voiced concerns in the press. They called the process rushed. They acknowledged the human cost. And then they folded. They let themselves be swayed by late-night tweaks, vague promises, or political loyalty. They did what was easiest, not what was right.
This isn’t new. But it’s still devastating.
When I read about lawmakers huddling under blankets in the Senate chamber at 3 a.m., fueled by carrot cake and caffeine, I couldn’t help but feel the disconnect. I know a different kind of 3 a.m. — one spent next to a hospital bed, watching your child attacked by seizures as doctors huddle over him trying to save his life.
It’s easy to stand tall when the cameras are rolling, when your party is watching, when your vote aligns with power. It’s much harder to stand up when you’re standing alone — when your vote might cost you political capital, or a committee seat, or an invitation to the next fundraiser, or the favor of a narcissistic, fascist dictator.
But that’s what courage demands.
Senator Chuck Schumer said it plainly: “They didn’t have the courage, they didn’t have the backbone to vote with the people of their states.” Some senators voted in “obeisance to Donald Trump and his billionaire buddies,” even when their constituents — the ones in hospital beds, the ones relying on Medicaid for cancer treatment or seizure meds or speech therapy — were the ones who stood to lose the most.
We’ve been in this fight too long to pretend this doesn’t hurt. I’ve filled out the Medicaid renewal forms while sitting on the floor of a hospital room. I’ve seen the costs of the pills, therapies, and surgeries that kept my son alive and have given him a life worth living. These programs, flawed as they may be, are holding up families like mine. If they cut it down, what’s left?
This wasn’t just cowardice. It was a performance of leadership with no real cost to the performers. But for families like mine, the cost is very, very real.
Your voice is so powerful. I so badly wanted to share your words on my platform. I know I need to find my own words as a mother of a 22 yr old son with refractory epilepsy. I came across this site Home of the Brave and wondered if you’d be interested.
“ We were glad for the chance to sit down with Sarah Longwell of The Bulwark today to talk about her newest project, Home of the Brave, that is creating a platform for everyday Americans to tell their stories about Trump’s radical changes to federal policy are impacting them.
Creating a platform for directly impacted people is a central commitment of any moral movement. We each have more power than we know, and that power can be unleashed in public life when we have spaces to share our stories with one another. It is a democratic practice that was instrumental to the making of the Declaration of Independence and is always needed to sustain a democracy.
We encourage you to check out Home of the Brave and consider sharing your story with them here.
We’ll also be taking the stories of directly impacted people to Congressional offices across the South this coming Moral Monday, July 14. You can sign up here (and include your home state) to get information about how to join a delegation near you.
As Sarah says, “Courage is contagious – so spread it!”
Forward together, not one step back!”