Eyes to the Wind

by Ady Barkan

  “Well, thank you,” he said, reaching to shake my hand and make his escape. I wasn’t quite finished. “Please, please remember this conversation,” I pleaded, moving my emotional appeal into sixth gear. He tried a bit of flattery himself, saying “You’re very read up on everything, aren’t you?”

  I decided not to reveal that I was a lawyer and a professional activist, opting instead for some hyperbole: “My life depends on it.” I moved to my closing argument. “I need you to make your votes match your principles, Senator—and for the rest of your life, you will be proud if you vote this bill down. You will be proud. And on your deathbed, I promise you”—my voice cracked with emotion at the thought of my own not-too-distant deathbed—“you will remember voting no. This is your moment to be an American hero. Please, we will all be watching you. Please. Thank you.” I shook his hand again and let him go. He turned around and walked to his seat. I turned to Liz, who stopped recording.

  “That was incredible,” she said. I asked her if she had captured it all. She was optimistic, but we immediately plugged her buds into our ears, rewound the tape, and watched the exchange from the beginning. I was relieved that everything was fully audible. Liz knew that she had social media gold on her hands. She tried to upload it to Twitter, but the Gogo Inflight didn’t cooperate. So we alerted her 2,000 followers and my 200 that we had just had a very good conversation, and the video would be forthcoming after we landed. We spent the rest of the flight getting to know each other, gossiping about Democratic politics, and deciding that we should start a super PAC together to elect progressive people to local office.

  Down on the ground in the Phoenix airport, Liz chopped the video up into seven bite-size pieces and tweeted it out. I boarded my connecting flight to Santa Barbara and sat quietly on the plane, reflecting on the intense trip. I thought back to my conversation with Megan Anderson, the disabled activist from Cincinnati, and to the new word that Shawn had taught me. Megan had said that there was a reason I was in D.C. Maybe they were right. Maybe it was kismet.

  Rachael had stayed up late, waiting for me to get home and following the action on Twitter. What a crazy coincidence, she said. She agreed with Liz that it had been a pretty incredible interaction, but we had a new and pressing problem on our hands. The air was burning my lungs. Nearby forest fires were racing through the mountains, saturating Santa Barbara in smoke and ash. It was unhealthy for everyone, but little Baby Carl and I were at particular risk. My lung capacity was already diminished, and this felt unbearable. We went to bed, agreeing to leave town the next day if things hadn’t improved.

  Morning came, the air was still terrible, and Liz’s video was going viral. A reporter from the Intercept was the first to reach out for an interview. Rachael got in touch with a friend from grad school who lived two hours north, in San Luis Obispo; yes, of course, he said, we could go stay with them for as long as we needed. I poked around on Twitter and played with Carl while Rachael packed up. I contacted a mentor from college who now edited the opinion page of the Washington Post. He said he would gladly take an op-ed. Our neighbors were not planning to evacuate and they agreed to watch our two cats while we were gone. We got in the car and started driving.

  By midafternoon I was camped out on our friend’s sofa in SLO and news outlets around the country were writing about #FlakesOnAPlane—including CNN, HuffPost, the Hill, and ABC News in Phoenix. The Arizona Democratic Party tweeted out a photo of the second-story marquee outside their headquarters, which now read: “Sen Flake / Listen to Ady / you can be a hero.” My coworkers at CPD jumped into action, pitching reporters, producing highlight videos, and figuring out a plan for escalating the pressure on Flake and the Republicans.

  By Saturday afternoon I had decided that I needed to build on the momentum and go back to D.C. Jennifer Flynn Walker was already planning the next day of mass civil disobedience for Wednesday, December 13. This time, though, I wouldn’t be flying alone. On the advice of a Twitter comment, I asked Rachael if she would like to come along and bring Carl. It would be more fun together and would make for some serious political drama. The tax scam was going to harm tens of millions of families, so we decided to put our whole family in the limelight to make the stakes crystal clear. NBC Nightly News sent a film crew to tell my story and show us preparing for the return journey.

  The fight was already beginning to take a toll on my body. I found it impossible to sleep lying flat on our friend’s guest bed, so I spent four uncomfortable nights propped up on the sofa, trying to get a little rest in between the scheming and organizing. We booked one-way flights to D.C., posted a fund-raiser online, reached out to Jeff Flake’s and Susan Collins’s offices to request meetings, circulated a press release, and got ready to escalate.

  The Republican tax bill was a central priority for the donors who represent one of the key pillars of the party’s structure. And in recent decades almost no one has been better than Mitch McConnell at enforcing partisan discipline, ensuring that no senators cross party lines to undermine his agenda. We knew, therefore, that there was tremendous pressure on Flake, Collins, and the other senators to vote for the tax bill. And we knew that our only hope of swaying their votes was to bring enormous counterpressure to bear. We would have to drive thousands of phone calls into their offices, get local papers to editorialize against the bill, and show them that the proposal was very unpopular with their constituents. None of us had any illusion that my conversation with Flake alone would convince him to vote against the bill. Kismet might open up some opportunities, but it is organizing that takes advantage of them. So we shifted into high gear, because we hoped that the conversation might finally stimulate our base to start fighting hard. During the earlier debate over Trumpcare, Republican members of Congress had been overwhelmed by phone calls and protests—just enough to convince Collins, Lisa Murkowski, and John McCain to vote no and kill the bill. But the resistance to the tax bill was much weaker. Dramatically less pressure was being applied, probably because people did not see the bill as a threat to their families. Sure, they assumed, it might further enrich the monied interests, but it wasn’t going to take away people’s health care.

  We were all hopeful that my advocacy might be a spark that could change this dynamic. By making the tax bill about health care and by personalizing it so vividly, I was trying to convince the base that the law was a threat to them, to our social safety net, to our democracy. As Jen Flynn Walker explained to me, our hope was not that Flake or Collins would be persuaded to vote against the bill simply because a few dozen people got arrested in front of their offices; rather, we thought that the arrests would force the news media to finally pay attention and convey our message to the general public. Civil disobedience has a way of focusing the mind, clarifying the moral stakes, and shifting the discourse away from abstract policy toward specific human stories.

  I began using my Twitter account to lay out this theory of change. Every day since the Flake encounter, I was gaining a few thousand new followers. I tried to use that platform to change the conversation about the bill, to clarify what it meant for my family and yours, for our economy and our society, for our government and our democracy.

  It was, as much as anything, a coming-out party for me. Until that week I had not been public about my ALS. For more than a year, Rachael and I had avoided saying anything about our new life on social media. We had been open about the disease with anyone we interacted with, but we had never broadcast our news to the hundreds of friends and acquaintances with whom we did not regularly interact. (I had hoped to post a message on Facebook at the six-month or one-year anniversary of my diagnosis, but I could never figure out exactly what to say. It felt too momentous. I let the dates come and go, using Facebook less and less.) In the days after the #FlakesOnAPlane video went viral, we received a stream of emails, phone calls, and text messages from people who had only just heard the news. It was too exhausting to become newly sad with each well-wisher. Instead, I tried to respond constructi
vely, telling them that we wanted to use the disease to fight back against the Trump agenda and asking them to join us in D.C., make a contribution, or call their members of Congress.

  A number of close friends took me up on the invitation to come make a final stand in Congress with us. My college buddies Sim and Jeremy came down from Boston and Philadelphia. Our new nanny-share friends from Santa Barbara, Mona and Jia-Ching, brought their baby, Layaal, all the way across the country to gallivant around Capitol Hill with Baby Carl. And Katy, the childhood friend who had first diagnosed me with ALS, told us that she had a few days off and offered to accompany us out to D.C.

  We arrived on Tuesday evening and checked into our new home away from home, the Capitol Skyline Hotel, where my bosses had splurged to book us the (modest) suite. A power recliner and a manual wheelchair were waiting for me in the living room. In the lobby, I had a joyous reunion with Liz Jaff, my new partner in bird-dogging. We spoke to a couple of reporters and then watched the returns come in from the special U.S. Senate election in Alabama. Our mood went from energized to ebullient when it became clear that Democrat Doug Jones would pull off the stunning upset. All of the momentum was on our side, and I was filled with optimism that we would be able to defeat the bill. Jones’s win meant that the Republican margin in the Senate would shrink to 51 to 49 once he took office in early January, and they would only be able to survive one defection on the tax bill. But in order to get there, we had to continue gumming up the works. And we intended to do just that, starting in the morning.

  Jen Flynn Walker had choreographed an elaborate dance of controlled chaos for the day. Rachael kicked off our advocacy by talking about our smoke-induced evacuation from Santa Barbara in a speech in the hallway outside the office of Representative Mimi Walters, a California congresswoman who had voted to reduce funding for the prevention of forest fires but found plenty of money to pay for massive corporate tax cuts. When Rachael finished, Jen Flynn took over the human mic and a couple dozen protesters sat down in the middle of the hallway, chanting, “Kill the bill, don’t kill us!” Jen escorted Rachael past the police officers while our first wave of disrupters took their arrests.

  Back at the hotel, I ate a bacon, egg, and cheese on an everything bagel and gave a few interviews to reporters. My friends prepared a half-dozen framed photos of me, Rachael, and Carl that we planned to give to the Republicans whom we would lobby that day. Then they shuttled me over to the Senate, where I was greeted by a dozen friends and family. My uncle Yochai, who had been an important role model for me, came down from Boston with his two sons. Brad Lander, the Brooklyn council member with whom I had founded Local Progress, brought his high schooler Rosa. We exchanged hugs and I tried not to burst into tears. My extended community was coming together in support of me and our shared hopes for the country. I could feel that something special was happening.

  In the bright, airy lobby of the Hart Senate Office Building atrium, I sat down with leaders from the Women’s March—Linda Sarsour, Bob Bland, Winnie Wong—plus Ana Maria Archila (one of the co-executive directors at the Center for Popular Democracy and a longtime leader in the immigrant rights movement) and Liz Jaff, to shoot a video about what we were doing that day. A few dozen comrades surrounded us, cell phones in hand, trying desperately to inspire others to join our battle. We talked about the assault on working families that this bill represented, about how it undermined our democracy and the social fabric of our country. And we talked about our hopes for a different world. We were trying to change the tenor of the debate, to speak in a different register, to transcend the quotidian partisan rhetoric in favor of a more profound discourse.

  After we were done, Jen Flynn announced that it was time for us to go meet with Senator Susan Collins. A handful of Maine residents had come down, and Senator Collins had agreed to give us fifteen minutes of her time. About two hundred supporters escorted us to her office and waited in the hallway as we went inside, accompanied by a New York Times reporter and a couple of live streamers. In the lobby of her office, we reiterated our theory of change: the only way that Collins might vote no is if we reached her on an emotional level. “If Senator Collins actually saw you as a human, saw me as a human, then she wouldn’t pass any of this,” I said to one of the Maine activists, well aware that the New York Times reporter was scribbling in his notebook. A standoff ensued when the reporter and videographers tried to sit in on the meeting. Collins’s staff insisted that they leave, and we finally relented.

  Once the senator came in, however, the leader of the Maine delegation began live streaming from her iPad, and everyone who had been kicked out watched our conversation on Facebook from the other side of the door. The activist women began explaining to Collins how this bill would harm them; Collins listened intently and then began reciting a mind-numbingly boring explanation of minor tweaks that she had negotiated in exchange for her support. I tried to bring the conversation back to the fundamentals, arguing that the bill would put Medicare at risk and severely damage the private insurance market. Collins showed us a letter that Speaker Ryan and Senate Majority Leader McConnell had sent her, promising that they would pass technical fixes that would protect consumers from excessive premiums. As I had done with Jeff Flake, I pointed out the many ways in which the Republican leadership had been lying about the bill, and argued that it was foolish to give her vote now in exchange for a promise of action later. Back and forth we went, long after the fifteen-minute mark.

  Finally, our field commander burst through the doors. “Ady, we have to wrap up this meeting,” Jen Flynn said. “Time is running out, figuratively and literally.” She meant that we had to move on to other offices and that our hundreds of protesters in the hallway were getting antsy. After the senator’s next apologia, I turned around in disgust and told my handler to wheel me away. Out in the hallway, I told our assembly that Collins was unwilling to use her power to protect the health care of her constituents; Jen took this as her cue and led a new round of chants. My optimism from the previous evening began to melt away: Collins did not seem open to voting no. I watched as the police arrested another few dozen comrades and then headed over to the Russell Senate Office Building, where a handful of Arizonans and I had a meeting scheduled with Jeff Flake. With Collins an apparent yes vote, we would definitely need to sway Flake in order to kill the bill.

  But when we got there, we were told that the senator was on the floor voting on some unrelated matter. We would have to wait. This was a problem. I had assumed I’d be arrested outside of John McCain’s office after our meeting with Flake. Soon the reporters and TV cameras would be going home for the evening, so we didn’t have time to dilly-dally. The young Arizonans started singing and chanting in the hallway, and I joined them. The police shouted out their first warning, telling everyone to disperse or be arrested. Sitting in my wheelchair in the crowded hallway, I had trouble seeing what was going on or communicating with anyone about what we should do. I began to ask for a mic check, but suddenly, after the cops’ second warning, Jen Flynn swooped in and wheeled me away. The visuals weren’t good here, she said, and I should wait for the grand finale.

  A contingent of about thirty people remained. We walked toward John McCain’s office. He was our final hope for a Republican no vote. He was back home in Arizona, being treated for brain cancer. I had written a comically long speech addressed to him, pleading that he not make his final act the destruction of our health insurance system. It highlighted the ways in which Mitch McConnell had spent the last two decades undermining McCain’s priorities, including campaign finance reform and the norms that had long governed the Senate. And it reminded McCain of Trump’s attacks on his military service. My hope was to deliver the speech, get arrested, and then try to get him a video of it. We turned a corner and I saw, up ahead, the majestic columns and high ceiling of the Russell Building’s rotunda. That setting would make for a far more compelling end to the day than another crowded hallway.

  I directed everyone to c
ome into the rotunda, and we formed a semicircle. Rachael stood next to me, holding Carl in her arms. His toddler friend Layaal and her parents gathered close. Megan Anderson put her wheelchair on my other side.

  A guitarist started strumming “This Land Is Your Land” by Woody Guthrie, which I had specifically requested for the occasion. Singing together creates powerful bonds and memories, and yet we do far too little of it in our movement—resorting instead to tiresome chants. I wanted this day to be different. Guthrie’s anthem had long been a touchstone in my family. It beautifully weaves together themes of solidarity, injustice, struggle, and natural splendor. It’s a song about loving America while insisting that she become a radically more just nation. Plus it just makes for a great sing-along. Someone handed out the full lyrics to the song, including the later radical verses. Brad stood in front of me, live streaming. So did my uncle, his eyes welling up with tears. I had to look away so as not to lose all control. We put our fists in the air and Carl sucked his thumb, soaking in the intense experience. The police began to move in, but Jen Flynn ran interference, begging them to let us sing for a few minutes. They obliged.

  After we were done, I began mic checking my speech addressed to John McCain. I got a few sentences in before the police lost their patience. Over the din of the police bullhorn, with people being arrested left and right, and others escaping behind police lines, I had no hope of actually delivering my epic monologue. So we sang a few more choruses and offered up the obligatory chants. When the police came to arrest me, I stood up from my wheelchair, looked at the TV cameras and cell phones in the balcony above, and raised a framed photo of my family, trying desperately to focus attention on the heart of the matter. The police officer took my arm and walked me out to the elevator.