Sarah Buttenwieser
5 min readJul 4, 2019
ACA — or bust

At my daughter’s gymnastics meets, the National Anthem is played. Sometimes, just canned music; sometimes with a sincere local singer warbling. I paid less attention to it before Trump’s election. Afterwards, I managed to put my hand on heart, digging deep to remember why I love our country — the lawyers who flocked to airports when Trump announced the Muslim Ban, the Little Lobbyists who flooded the Capitol in support of the ACA, right through the wave of inspiring people who were elected to the House in the 2018 elections. When my daughter quit gymnastics this winter, I was really sad about it, except for the fact that I no longer have to wrestle with the Anthem, which often brought me near conflicted, stomach-twisting tears.

Today is no better with the tanks and the GOP donors and the millions diverted from our entrance and recreation fees for a partisan fundraiser while we leave immigrants in “squalid conditions” at our border perpetuating a “humanitarian crisis,” all words that dull the granular details of what our tax dollars are doing in the name of our country — imprisoning innocent people in filth and fear, denying them adequate food, water, shelter, rest, their families, phone calls, their personal property, and their due process to immigrate to this land supposedly of open arms and open borders. Aluminum blankets, are a contradiction in terms, save for after a marathon or during a severe weather crisis. Aluminum blankets are not meant for people who need sleep night without the lights being turned off after terrifying night.

An accurate description of me these days is a person routinely careening toward hopelessness about our country, who keeps cajoling herself back. Nothing in my life compares to horrors of kids in cages separated from family with no paper trail intact. I’m an educated, privileged white person with anxiety and depression and the Trump administration is doing me no favors, but I am, I have to remind myself, fine. I’m fine. I’m not fine.

Late this spring, I went to D.C. and followed through on my 2019 bucket list item, which was to go see my representatives and practice citizenry. Inspired by people like my friend (my former school nurse) Pat, who spends some of her “retirement” on lobby days, I reached out to another inspiration, my friend Jeneva. With her son Robert, she’s been going to Capitol Hill with the Little Lobbyists to advocate for the ACA. Robert is a young adult with complex medical needs. His disease is so extremely rare the process of pushing medical researchers to discover what it is took a decade of advocacy.

“Let’s lobby together for the ACA,” I wrote her.

She was game. My friend, Cher, happened to be in D.C. as well. The three of us, Robert, and Robert’s nurse, Gloria were set to meet with aides in Senator Markey’s and Representative Jim McGovern’s offices.

The night before, Jeneva messaged about where to meet. She wrote: what do you want to say?I suggested disability and reproductive justice and health care are interwoven, because all are about bodily autonomy. Do I get to care for my body as I see fit? This is about whether to provide enough health care for a person to live a meaningful life, ensure access to nursing and services to remain in a community, terminate a pregnancy, be trans and be assured of health care, get help to get pregnant if necessary, obtain actual, ongoing mental health care. The ACA is all about how to get to be human on our terms.

“Yes!” Jeneva wrote back. “Bodily autonomy is the through line.”

Before we went to Senator Markey’s office, Gloria suctioned out Robert’s trach in the hallway. The loud noise startled someone in the office, and she came out to make sure everything was all right. Although I’d read a lot about Jeneva’s experience parenting Robert, I hadn’t met him. I knew that his care required vigilance 24/7. To know it, and to glimpse it, to hear it, in real time, those are different things. No question people in those offices will remember Robert and want to do more to help families with such profound caretaking requirements. Cher spoke of her trans son, and his future and the future of people who couldn’t afford care and weren’t protected by the fact of supportive families. I spoke about the need for access to reproductive health care in general and mental health care. I didn’t say — and didn’t have to — how essential those things were for my family, as is true for so many other families.

“Real stories, real lives, they ground us in our work,” Brianna Battle, Senator Markey’s aide, told us. “These stories spur us on to fight harder.” She said they welcomed future visits from Little Lobbyists, an organization that is comprised of families whose children, like Robert, desperately need the ACA to help them care for complex medical needs. You’d know them as the group that helped save the ACA for us all just a couple of years ago.

We felt good at the end of our meetings, but sobered. The challenges to health care and to democracy appear to mount by the hour. Brianna spoke about the “fights in front of us” and how overwhelming the onslaught is. In the airport before I flew home, I read that the Department of Justice refused a judge’s request for information, again, an “unprecedented” occurrence for which we can’t be assured recourse. Another state legislature agreed to strike down abortion rights. There was another mass shooting, but I didn’t even know that until after I returned home.

Late that evening, Jeneva messaged me: “It isn’t hopeless. It never really is.”

I certainly felt less desolate and isolated after our having put our voices together. Reading her message, I took a deep breath and vowed to agree, because hopelessness renders me — anyone — useless. I wish I could say that my calls and letters to the editor, my donations, anything I do to fend against letting despair win felt like it mattered. The horrors are so big, and our hearts are both so big and only able to fit in our bodies, which are, in the scale of things, so small. Hanging onto a way to keep rediscovering truth in her words: “It isn’t hopeless. It never really is.”



Sarah Buttenwieser

Writer, brainstormer, networker — follow me on Twitter @standshadows