The spring of 2010, when the Affordable Care Act was signed into law, was preceded by a hard winter for my family. In February, two major snowstorms hit the DC area where we lived within one week, dropping thirty to fifty inches of snow. They called it Snowpocalypse. During the height of the second storm, I slipped out a bedroom window onto our long porch roof, afraid it might collapse from the weight and knowing we couldn’t afford to repair it.
This was the accessible home we’d built for our son Robert, a medically complex child disabled due to an undiagnosed disease. We’d been chasing a diagnosis and treatments for him for 12 years. I bit the shovel in deep and pushed the heavy snow forward, watching it cascade into piles on the front lawn. Snow clung to my eyelashes, my vision spotted with haloes from the street lights. As fast as I shoveled if off, it accumulated.
Struggling with health insurance in the days before the ACA had been much like shoveling my way through an unending financial storm. My family had had 6 different health insurers in those dozen years, always one step ahead of bankruptcy by medical expense, whether due to annual caps, lifetime caps, or the tens of thousands of dollars we’d spent on co-pays, medications, uncovered items, and other out-of-pocket expenses. I’d taken a job I didn’t really want as an editor for a federal advisory committee, just so we could have the golden ticket: federal health insurance.
But I wanted more: The ability to live how I wanted to live. The freedom to do what was best for my family. That meant choosing where we wanted to live, pursuing work for the love of the job, not the health insurance tied to it, and knowing my son could be insured even if a good work opportunity didn’t offer health benefits.
During the 2008 campaign, Obama had promised to deal with our country’s health insurance crisis, yet during the summer of 2009, his opposition had gotten the upper hand: health insurance reform meant no one would be able to choose their doctor and the federal government would establish death panels. I’d watched a town hall meeting at which a senator from Oklahoma heard a sobbing woman describe her brain-injured husband’s eviction from a nursing home when his benefits expired. He had a feeding tube, and she was now expected to retrain him to drink and eat on her own. The senator replied, What’s really missing here is the failure of neighbors to help others who need our help. The audience burst into resounding applause.
Self-reliance, rather than government hand-outs, was the yardstick of freedom that audience understood. I’d learned self-reliance growing up in 1970s Vermont, when the state was still staunchly conservative. That mentality from my youth had me futilely shoveling snow off my roof in the middle of the night, without considering how easily I might fall off. We were always in danger of falling off and losing everything.
Our neighbors had helped us as they could, but I relying on them would be just another form of dependence. None of them had the money or expertise it took to pay for my son’s healthcare or assist with his home medical needs.
Robert’s illness taught me that self-reliance and freedom were not the same thing. If you’re free you can go anywhere and do anything, right? But you’d better not have anyone depending on you. Janis Joplin sang, “Freedom’s just another word for nothing left to lose,” yet in my life, I’d had everything to protect and keep. She and Bobby McGee were drifters, criss-crossing the U.S. That’s not the type of citizenship most of us experience, even if we admire its free-wheeling nature.
Freedom and self-reliance are a delicate balance. There are few opportunities without a solid base of support: some self-reliance, some neighborly, and, yes, some from the government. It is our government; it is we the people who form it. Our government can provide a platform for each of us to seek freedom. Let me put it this way: If I had certainty with healthcare, then I could take other chances. Then we could chase a better way of life—the American dream.
That spring of 2010, the ACA proceeded to a final vote, and Speaker Pelosi struggled to keep her caucus in line. Bart Stupak of Michigan was the final hold-out. In his floor speech, Stupak said that he wanted women to know that if they had a child and that child had medical problems, he or she would be entitled to medical care. I cried. Stupak understood what my family had gone through, all that long winter. Freeing my child meant freeing me and my family.
The ACA remains under attack today, snowflake after snowflake piling up and threatening to keep all of us in a permanent winter. Let’s not allow the critics to snow us in. Let’s move forward, once again, to a new spring of improved healthcare-for-all, so we can each manage our competing responsibilities and free-wheeling dreams.