I’ve spent my career as an advocate for economic justice, fighting for basic fairness for working families. It wasn’t until this past year that I began fighting for my own life.
It’s that fight that led me to get arrested protesting the Republican tax plan in Washington, and that led me into debating it with Sen. Jeff Flake at 30,000 feet in the air on my way home.
I never thought I’d be in this position. A year ago, I was healthy, taking morning runs on the California coast and looking forward to a new life with my newborn son, Carl.
Then I developed ALS, or amyotrophic lateral sclerosis. It’s a terrible brain disease with no cure and no good treatment. Every week, it’s making me a little more paralyzed. Today, I walk with a cane. I have trouble breathing. And I can’t pick up Carl to kiss him.
In the next few years, unless a miracle strikes, I will die, because I won’t be able to breathe. Or I’ll continue to live, hooked up to a machine that breathes for me.
This reality is hard enough to face. It’s only harder knowing the financial burden will fall on my family. If I survive, that machine will be paid for by Medicare disability insurance, costing hundreds of thousands of dollars annually.
But the Republican tax plan would throw that insurance into jeopardy. The bill would raise the deficit by more than $1 trillion, automatically triggering cuts that would devastate our country’s safety net. Both Medicaid and Medicare could be decimated – and House Speaker Paul Ryan has already indicated he would tackle cuts to those programs after the bill passes.
If he does, I may not be able to get the ventilator I need to stay alive. My family might not have the insurance it needs to make ends meet and afford my care.
Fighting the bill at these last stages seems impossible. But I know that even the impossible can be overcome.
Before my diagnosis, I started a campaign called Fed Up, fighting for what seemed an unattainable goal: reforms to the Federal Reserve to make it more accountable to low-income communities of color. Just a few years later, we won a place for those communities at the same table as Fed leaders, where they heard firsthand stories of how monetary policy affected their lives. Through those conversations, we won unheard-of victories, including a promise for Fed accountability in the Democratic platform.
Now, faced with the impossible once again, we have to rely on the same weapon, the only one we have left: the power of our voices.
Republican politicians need to hear those voices. They need to take the blinders off and recognize what this bill will really do to people like me.
It will do none of what Flake or other Republicans say it will do. It raises taxes for tens of millions of Americans and, by nearly all independent estimates, explodes the deficit. It will widen inequality. And by stifling opportunities for people like me and my family, it will put the brakes on growth and progress for the whole country.
We still have time to defeat this catastrophe of a bill. We need to raise our voices even higher. My son and I and millions like us are counting on it.