Eyes to the Wind

by Ady Barkan

  A few hours later, after I had paid a $50 fine and been released from lockup—after my friends and family had finished eating Indian food out of to-go containers in our hotel suite, and after Rachael had gone to sleep—I sat in my recliner and tried to catch my breath. It had been a whirlwind day. A whirlwind week. A whirlwind year. A few months earlier, when my therapist had asked me whether ALS was giving me anything—in addition to taking so much away—I had struggled to answer. The best I could come up with was that it had created more time with friends and family over the past year and had let me skip some passport control lines on vacation. But now I had a different kind of answer. As I sat in the hotel room contemplating the possibility that I could use my ALS to block the tax bill—or at least gin up enough resistance to make the vote politically damaging for the Republicans—I realized that I had a better answer to his question. ALS was giving me newfound power at the very moment that it was depriving me of so much strength. My voice was growing softer, but I was being heard by more people than ever before. My legs were disintegrating, but more and more people were following in my footsteps. Precisely because my days were numbered, people drew inspiration from my decision to spend them in resistance. Precisely because I faced such obstacles, my comrades were moved by my message that struggle is never futile.

  Sitting in that armchair late into that night and the nights that followed, I began to understand just what it was that I was doing in Washington, D.C. Of course, I had come to try to defeat the tax bill. But I was in search of so much more. I was in search of a legacy and in search of a personal story that ended in something more than tragedy. It was through collective struggle, I began to realize, that I could find my personal liberation. I could transcend my dying body by hitching my future to yours. We could transcend the darkness of this moment by joining the struggles of past and future freedom fighters. By coming together in pursuit of a different world, we could tell a different story about who we were—who I was. We could, in the words of my aunt, “make meaning” out of our time on earth—make meaning even out of my ALS.

  The battle over the tax bill was reaching its final crescendo. Both the Senate and the House had passed similar versions of the bill. But they needed to pass identical versions, so we had one last bite at the apple. It was Thursday morning, December 14, and we expected the House and Senate to vote on Monday and Tuesday. That meant we had four days to generate as much opposition as possible. We scheduled our last stand for Monday, December 18, my thirty-fourth birthday. I spent Thursday and Friday being pushed around Capitol Hill, doing interviews on CNN and MSNBC, filming messages to the base with Senators Elizabeth Warren and Bernie Sanders, and trying everything we could to encourage people to come for protests on Monday. (I had previously worked with both Warren’s and Sanders’s staffs on Federal Reserve policy but was only now beginning to develop a personal relationship with the senators themselves.) Doug Jones’s victory in the Alabama Senate race showed the tremendous danger that Republicans would face during the upcoming midterm elections. Our hope was that if we filled the halls of Congress, we might scare a dozen members of the House into voting no. Or perhaps we might break through to the conscience of McCain or Flake or Bob Corker or Murkowski. And if that didn’t work, we would turn to plan B: actually defeating the Republicans in the midterms. If we could make the tax bill politically toxic—precisely by highlighting its enormous human consequences—then perhaps we could make sure that there would be no affirmative Republican legislative agenda for the final two years of the Trump presidency.

  Over the weekend my coworkers from the Center for Popular Democracy and I made a last-ditch effort to enlist the institutional center-left in the fight. There are innumerable think tanks, advocacy organizations, and labor unions in Washington, D.C., with many thousands of staff between them. But very few of these institutions were putting significant effort into defeating the tax bill. We spent Saturday and Sunday trying to change that, hoping that we might convince at least some of these allies to empty their buildings on Monday and send all of their staff into Congress to join our protest. This was our best chance to sow dissension within the Republican Party and undermine their electoral prospects. Our weekend effort was wildly unsuccessful. Our requests came too late and fell on ears that were too uncomfortable with transgressive direct action. Although they sing the praises of the workers and civil and women’s rights movements of bygone eras, too many professional advocates are unwilling to adopt the very tactics that made those movements powerful.

  Monday morning arrived, bringing with it my birthday and some of my closest friends. Sim had managed to trade shifts at his Boston hospital and came down wearing his lab coat. Jeremy took the train over from Philadelphia. In my hotel room, the three of us put on matching black T-shirts with a simple message: “Democracy!” We shooed away some of the people who were milling about and insisted on quiet. I picked up the landline and called in to Pod Save America, the political podcast hosted by former Obama administration staffers who were trying to help mobilize the resistance. We talked about the tax bill, I gave them a hard time about the strategic errors of the Obama White House, and we established a friendly rapport that would help promote my activism repeatedly over the following year. Michael Nigro, a photojournalist from BuzzFeed News, arrived with his cameras to follow me around for the day; the portrait he took of me that night, fist raised in the air, would become my favorite.

  Our coalition had decided that our closing argument should emphasize the impact that the tax bill would have on health care. It was the issue that voters cared about most. So we began the day with a press conference featuring nurses, doctors, and patients talking about Medicare and Medicaid. Sim stood behind me and spent the day wheeling me through the halls of Congress, nearly a dozen years after we had first occupied a nineteenth-century neoclassical building together.

  Nisha Agarwal, the New York City commissioner for immigrant affairs, had come down to D.C. as well. She had helped found the Center for Popular Democracy back in 2012 and had gone into the de Blasio administration filled with hope that she could model for the rest of the country what a pro-immigrant local government looks like. She was charismatic, strategic, and unabashed about her ambition to change the world. But then she, too, was struck by fatal misfortune before even turning forty: glioblastoma, like Senator McCain. Unlike me, however, Nisha had decided to remain intensely private about her brain disease. But a second aggressive surgery to treat her cancer in mid-2017 had gone awry, causing a stroke that initially left her unable to speak or move. She was recovering—slowly—and saw in our protest against the tax bill the opportunity to speak publicly about her struggles and our broader collective struggle. In a New York Times profile of her trip down to D.C., Nisha argued that the tax bill was prioritizing the needs of the 1 percent at the expense of medical research that could help find a cure for her cancer.

  She and I and a few hundred other protesters spent the day visiting the offices of swing senators, speaking to reporters, trying to highlight the human costs of the legislation. We ate birthday cake outside of Senator Collins’s office, strategized with Nancy Pelosi, and tried to encourage optimism among our troops. In the afternoon, Megan Anderson and I rolled up to Senator Lindsey Graham, who was giving an interview to a bank of TV cameras about his friend John McCain, who was back home battling cancer. I began to speak with him, but he took one look at me and ran away. I recounted the story the next day at a major press conference organized by Pelosi, in a clip that would be viewed over 2.5 million times on Facebook. Graham’s behavior was emblematic of the entire tax scam, which was being passed without public hearings, without testimony from patients or tax experts or medical professionals, without any genuine engagement with the American people. Graham was afraid to acknowledge my humanity, because doing so would make his position untenable. The Republican agenda was too damaging to the American public to survive an honest accounting, too damaging to survive genuine public debate and scrutiny. Grah
am and McConnell and the rest of them knew that their argument was a losing one, and so they did their work behind closed doors and ran away from those of us trying to pry them open.

  But although we clearly had the better argument, we had failed to build enough power. Our efforts over the weekend had failed to generate a significantly higher turnout than on previous days. Enthusiasm on Twitter and last-minute scrambling were no replacement for deep, deliberate organizing. Without huge, disruptive crowds, we had little hope of scaring enough Republicans into voting no. Our messaging began to shift. If this government was unwilling to see our humanity, unwilling to promote the public interest, then we would have to replace it with a different government. It was time for the American people to rise up, I said—not just over the coming days and weeks, but over the months between now and November.

  We returned to the Russell Rotunda for one final hurrah, where over one hundred of us sang and chanted and took arrest. We had lost this fight. Trump had his first major legislative victory. But we had our message for the upcoming midterm elections. The Republican Party had sold out the American people in favor of their corporate donors.

  Rachael and I bought our plane tickets home. ALS was continuing its daily assault on my body. Carl’s hair was continuing to grow longer and curlier, his vocabulary broader and more entertaining. My newfound notoriety created new opportunities for activism and only heightened the difficult choices I faced about how to spend my precious, limited time.

  Back in Santa Barbara, on December 21, we confronted a new, untimely loss. Our beloved cat, Dante, who had lived with us for ten years in three states on two coasts, had gone missing during the evacuation. He had warmed our laps during countless winter evenings, but we would have to face the new year without him. We bought one of the few remaining Christmas trees, hung Carl’s stocking over the mantel, and snapped a photo of the three of us. I tweeted it out with the most hope that I could muster: “It’s been a hard year for many families, including ours. And next year will bring a new wave of challenges. But we’re here together now. So we’re going to cherish this moment, enjoy this day. And we’ll do it again tomorrow, thankful for what we have. May you find peace, too.”

  CHAPTER NINE

  RESISTANCE

  As soon as the tax bill was signed by President Trump, I began to look around for the next political struggle. There were some major policy questions in front of Congress, and the midterm elections were only ten months away. I had a new platform from which to influence national political discourse and I wanted to make use of it quickly—not only because there were urgent issues to address, but because my body was rapidly deteriorating and I knew my platform would soon disintegrate as well. Whatever mark I wanted to leave on the world, whatever legacy I wanted to leave for myself—for Carl to remember me by—I had to leave it now.

  On the day before Christmas, from the comfort of my Santa Barbara living room, I called up Ana Maria Archila. She and I talked through the contours of the immigration debate that was about to dominate national politics. When Congress reconvened in the new year, there was going to be a major battle over the program called Deferred Action for Childhood Arrivals, or DACA, which President Obama had created to give nearly a million young undocumented immigrants authorization to work and live in the United States. Trump was threatening to end the program and dishonestly demanding that Congress reestablish it through legislation. Although there were bipartisan majorities in both the House and the Senate in favor of permanently codifying DACA, the Republican leadership was committed to satisfying its racist and xenophobic base by letting the program expire or, at the very least, holding the young immigrants hostage in exchange for an even more militarized border and a more restrictive immigration system. Nevertheless, we had some hope that we could overcome their callousness because they needed Democratic votes in order to pass essential spending legislation before January 20; if Democrats held firm, they could trade their support on the budget for fair floor votes that would make DACA permanent.

  I asked Ana Maria what CPD was doing on DACA and how I could help. She told me to call up her old mentee, Cristina Jiménez, who was the executive director of United We Dream, the country’s largest immigrant youth membership organization and the driving force behind the creation of DACA. Cristina would understand every nuance of the current debate and would know how we could best be useful. We connected two days later, our respective stomachs full from holiday feasting.

  Cristina explained to me that she and her coalitions had two chief objectives. First, the movement needed to shore up support from Senate Democrats for taking a tough bargaining position. If they held together in support of a filibuster to the budget legislation, they could shut down the government and create a political crisis. This was the leverage they had to demand a floor vote from Majority Leader Mitch McConnell. But not all Senate Democrats were quite ready to go to bat for the undocumented immigrant youth. That needed to change. Second, Cristina explained to me, we needed to force some Republicans in the House to express support for DACA. There were about two dozen Republicans in swing districts who had many immigrant constituents, and Cristina hoped to pressure them to support DACA—or, if they resisted, unseat them in November.

  We made a plan. We would kick off the new year with a bang, holding a protest outside the office of California Democratic senator Dianne Feinstein; she was an establishment Democrat who was being wishy-washy about this fight but was also facing a serious primary challenge and couldn’t afford to alienate immigrant communities or the progressive base. If we could force her to take a strong stance, it would send a powerful message to Senate Minority Leader Chuck Schumer and the rest of the caucus. Cristina would organize immigrant youth and allies and I would bring along a couple of Hollywood celebrities and movement allies whom I had built relationships with over the preceding month. We got to work and scheduled our protest for January 3 in Los Angeles, hoping to set the tone for the whole year.

  On the evening of January 2 we got some good news. Our press release previewing the following day’s protest had done the trick, scaring Feinstein into releasing a strong statement saying that Democrats should not vote for a funding bill without a corresponding vote on DACA. Ana Maria, Cristina, and I celebrated over texts and email: there is nothing more gratifying than having your demands met even before you hold your protest! We decided to go through with the action anyway, tweaking our message slightly and saying that we needed the rest of the Democratic caucus to reiterate Feinstein’s position.

  The next afternoon the three of us met up at a coffee shop near Feinstein’s office along with a few dozen immigrant youth, the actors Alyssa Milano and Bradley Whitford, and the Women’s March leaders Linda Sarsour, Bob Bland, and Winnie Wong. Rachael was flying out of LAX early the next morning, so she and my dad came along for the ride; my childhood friends Katy and Nate Smith came to support us, too. And we also had some uninvited guests. A crew of white nationalists were occupying the corner outside Feinstein’s office, and they had apparently already punched somebody before we arrived.

  We gathered at a corner a block away and gave speeches to the assembly of network TV cameras and live streamers. Feinstein’s staff had asked if we would come up to meet with them, so we marched our company down the sidewalk to the battlefield, Alyssa pushing my wheelchair while I held hands with Cristina, and Ana Maria led our chants. When we got to the corner across the street from Feinstein’s office and the hateful counterprotesters, Linda and most of our large group stayed behind while eight of us crossed the street under police escort. The cops had suggested that we enter the building through a back door, but we insisted on our right to go through the front door like all of the senator’s other constituents. So the cops accompanied us as we marched straight past the white nationalists, who screamed in our faces. They were frightening, but their presence mainly served to highlight the stakes and contours of the debate. Whose side were Senators Feinstein and Schumer going to be on?

&
nbsp; Upstairs, a group of five undocumented youths told their stories and demanded that Feinstein hold strong and pressure California’s House Republicans to support DACA. Her staff reiterated her newfound resolve, to our satisfaction. We tried to wrap up relatively quickly because we knew that our crew was working hard down at street level, trading chants with the MAGA hats. Back downstairs, we closed out the proceedings by declaring our protest a success and announcing that we would soon take our fight to Washington, D.C.

  Back at home in Santa Barbara, I had different new battles to fight. It had become too difficult for me to dress myself in the morning, and Rachael had her hands full getting rambunctious Baby Carl and herself out the door. So I reached out to a local nonprofit that connected me with a freelance home health aide named Poppy. She was middle-aged, going on sixteen, with glitter on her temples and jeans that she had hand-painted with colorful figures and patterns. Every morning from eight to ten a.m., she would come and help me get dressed, make me breakfast, and play with Carl if Rachael needed a moment. Over avocado toast (obviously), Poppy told me how she had gotten involved in caregiving: as a young woman in the ’80s she nursed her brother, who was dying of AIDS in small-town Minnesota. Her story reminded me to be grateful that ALS is not accompanied by excruciating pain or oppressive social stigma, that suffering is universal, and that our deaths can leave behind beautiful legacies.

  New symptoms were coming on fast. I found myself increasingly short of breath, and the pulmonologist at Cedars-Sinai told me that my forced vital capacity had continued its steady decline. He wrote a prescription for a ventilator and told me to use it whenever I needed help breathing and at night whenever possible. A few days later I got an email from the company that provides such devices: my health insurer, Health Net, had denied coverage based on the absurd claim that a ventilator would be “experimental.” It is, in fact, totally standard care, one of the only things shown to marginally extend life expectancy. I took to Twitter, calling out Health Net for its ridiculous behavior. A few thousand retweets and eight hours later, the respirator company emailed me back. “You must know some pretty powerful people.” Health Net had reversed its decision, faster than ever before.