Eyes to the Wind

by Ady Barkan

  Phoenix sprawls. Dozens of miles of single-family homes and cookie-cutter strip malls, splayed out on a mind-numbing grid. And then dozens of miles more. At a retirement community, we visited a monthly Parkinson’s group meeting, where I talked about my battle with ALS and why the special election was so important for protecting our access to health care. Rachael and Carl and I knocked on a handful of voters’ doors, giving Nick the B-roll shots he would need for our political ads. We stopped by the local Democratic headquarters and gave a pep talk to the volunteers, telling them that their efforts would set an example for activists all around the country. With Nate’s and Rachael’s steady support, I made the exhausting effort to get in the hotel swimming pool with Carl, to Nick’s effusive gratitude. Then, at eleven p.m.—with marijuana stoking our creative embers and suppressing our better judgment—Nate and I made the decision that we should all wake up in six hours, go buy red T-shirts at Walmart, and join the thousands of students and parents and teachers who were demanding a real investment in the state’s public schools, the latest in a wave of bold teacher strikes that had won unlikely victories in conservative states that year. Liz and Nick were game, and I was lucid enough to let Rachael and Carl sleep in.

  The following day was our main event. At seven thirty a.m., in an antiseptic office park in the municipality of Surprise, Arizona, the chamber of commerce was holding the only candidate forum of the election. We had purchased a block of tickets in the hope that we might re-create a #FlakesOnAPlane moment. Nick Bruckman and his crew were not allowed to bring in their professional equipment, but they each had high-resolution iPhones at the ready. Our hosts knew we were coming: four police officers stood guard at each door, the machine guns in their hands more appropriate for Fallujah or Grand Theft Auto than a polite civic breakfast. The friendly neoliberal moderator asked straightforward questions of each candidate while the chamber’s officers watched us like hawks, expecting a disruption at any moment. We didn’t oblige.

  Instead, when the Q and A session was over, I rolled up to the Republican, State Senator Debbie Lesko, and asked why she wanted to strip me and those Parkinson’s patients of our Medicare. Neither she nor the congressional Republican leadership wanted to cut Medicare or Medicaid, she insisted. I expressed grave concern that she didn’t even know about her party’s central legislative agenda and promised to send her the evidence that very day. It wasn’t a Jeff Flake home run, but Liz and Nick got the footage they needed. Nick’s editor spliced together my conversation with Lesko against the crystal clear headline from the Washington Post: “Ryan says Republicans to target welfare, Medicare, Medicaid spending in 2018.” Our video made the rounds on Twitter and the Arizona Republic published a long article about my attempt to influence the election, including via what Liz audaciously promised would be a six-figure ad buy.

  I kissed Rachael and Carl goodbye and thanked her for taking time off from work to join this expedition. Nick and his crew flew home. And Liz, Nate, and I flew to Atlanta for a meeting of the biggest Democratic donors in the country to try to make good on her bravado.

  The Democracy Alliance was founded by wealthy Democrats after the 2000 election in order to build political infrastructure to help win elections and advance progressive priorities. I had been invited to give a seven-minute plenary talk in the ornate ballroom at the luxury hotel where the DA was holding its biannual meeting. I prepared some inspirational remarks, but it was Liz who had brought with us a secret weapon with which to introduce me: a three-minute cinematic epistle from me to Carl, weaving together our family’s struggle with ALS, my activism during the tax bill fight, and the importance of the upcoming midterm elections. Nick had produced an incredibly powerful video, complete with a soaring orchestral score, and as I rolled out onto the stage, I looked out over a sea of teary-eyed millionaires.

  Over the next twenty-four hours, Liz told everyone and their mother about our trip to Arizona and the opportunity to score a stunning political upset. She shook the trees for donations, climbed into the branches to shake them some more, and then got out a chain saw and swung it around wildly until she had raised a cool $100,000. Back in New York, Nick and his editors pulled together two thirty-second advertisements featuring images from our recent trip and urging voters to vote for the Democratic doctor. We wired the money over to the TV stations and to Facebook on Thursday evening, which meant voters would see them for a full four days before polls opened on Tuesday. I was glad that other politicos were finding our work valuable but nervous that it wouldn’t make a difference.

  Meanwhile, my speechifying duties complete, Nate and I woke up before dawn and drove east to the Town House Café, a restaurant famous for feeding civil rights activists back in the day, right off the courthouse square in the town of Covington, Georgia. There, I poured loads of salt on my grits and eggs and listened as an old-timer recounted the month he spent in jail because the white city government refused to let him and his comrades pay bail for their sin of protesting segregation. Our hosts were Richard Dien Winfield, a University of Georgia philosophy professor, his righteous wife, Sujata, and their adult children. Winfield was running for Congress on a transformative platform: a guarantee of access to a decent job for anyone who wants it, enhanced free Medicare for all, a $20 minimum wage, free child care and university, and free access to legal services for civil and criminal matters.

  Winfield and I bonded over our shared opinion that the job guarantee in particular had the potential to transform America’s economy and society. The central concept was simple. Any U.S. resident who wanted one could get a job, funded by the federal government, that paid a fair wage, included good benefits, and provided a useful service to the American people: installing solar panels and retrofitting homes; building public housing and mass transit; caring for young children, the elderly, and disabled people; creating public art; rejuvenating local parks; teaching summer camp; and on and on. Done correctly, a good-jobs guarantee would largely eliminate poverty in the United States. It would directly and radically improve the lives of long-term unemployed and “unemployable” people—particularly the black, Latinx, and Native American workers who suffer from both structural and malicious discrimination. It would combat gender inequities by giving women an alternative if they are being underpaid or mistreated in their jobs. It would empower all private-sector workers to demand raises and form unions by dramatically reducing the costs of being fired. It would facilitate a just transition to a carbon-free economy. It would strengthen our economy’s long-term trajectory and people’s daily lives by creating transit, energy, and communications infrastructure. And it would enrich Americans’ lives by funding child, elder, and special-needs care. Sounds pretty good, huh?

  The job guarantee was also a crucial intervention into American politics. America’s founding sin and its continuing greatest failure is the racialized inequality that has been built into our economy. And as the 2016 election made clear, the Democratic Party has struggled to imagine an agenda that addresses race and class at the same time. This failure left open political terrain that could be occupied by the racism and corporatism of Donald Trump. This was the insight that Amy Carroll had introduced to Fed Up, turning it from a good but wonky idea into something that grassroots activists could connect to. It was also a key insight of Martin Luther King Jr. and Bayard Rustin. The 1963 March on Washington was billed not only as a march for civil rights but a march for “jobs and freedom.” I continue to believe this combination is central to a politics that can unite a race analysis with an inequality (or class) analysis, transcend the dilemma that Liz and I had debated in Arizona, and inspire a movement big enough for the change we need. That was why I had traveled to rural Georgia. A job guarantee can address race and class at the same time, uniting all the various interest groups within the party around a common vision for shared prosperity. I believed that a victory by Winfield in the general election, or even just in the primary, would help us place this issue at the center of the Democratic Par
ty’s agenda.

  Over the course of twelve fascinating hours, Winfield and I spoke about his platform with progressive activists in Oxford, white Republican residents of a trailer park in Monroe, black residents of a public housing complex, and union leaders at a United Steelworkers Hall. I urged the activists to pour their hearts into this campaign because of how it would transform the contours of acceptable political discourse in our country if Winfield could win on such a platform in a southern Republican stronghold. Everyone we spoke with enthusiastically embraced his vision for a more equitable economy. Not a single one worried about budget deficits. I gave Winfield some pointers about his canvassing rap and spoke with his staff about their field program, which was disappointingly small. After the union meeting ended, Sujata pulled me close and told me something about my legacy and my country and my son. I began sobbing and buried my face in her shoulder until I was ready to look up and say good night. As Nate drove us over dark country roads back to Atlanta, I was filled with a sense of hope and purpose and deep, permanent loss.

  Both the Arizona doctor and the Georgia philosopher lost their elections that spring, but their efforts foreshadowed good things to come. Tipirneni lost by only 5 percentage points, a massive swing in a district that Trump had won by 22. If Democrats could create a wave even half that big in November, they would win dozens of seats and take control of the House. Winfield did not win his congressional primary, but only a few weeks later a young Democratic Socialist named Alexandria Ocasio-Cortez won hers running on an equally bold platform in New York City, shocking the Democratic establishment. I had publicly supported her primary challenge to the incumbent corporate Democrat, and had made a small donation, but was as surprised as everyone else when she won. In Congress, Ocasio-Cortez has already become the most prominent advocate for a Green New Deal, with a job guarantee at its center. Her vision is brilliant because it marries a wildly popular proposal—decent jobs for everyone—with a crucial policy intervention: a just transition to a carbon-neutral economy. In order to preserve the planet, America must find a new reservoir of political will, and the Green New Deal represents the best path I’ve heard to reach those salutary waters.

  “Faster! Faster!” Carl said, the first time we put him in my lap and I rolled my wheelchair down the sidewalk. Once I resigned myself to using the wheelchair, and we resigned ourselves to paying $28,000 for a used wheelchair-accessible van, my world expanded. I could once again go to the zoo, accompany Rachael to pick Carl up from day care, and go down to my beloved shoreline. Watching the college boys and svelte grandmothers and jolly parents running on the paths I knew so well was no longer infuriating. Oftentimes it wasn’t even sad. Instead, I was just happy to be out in the fresh warmth.

  That spring we celebrated Carl’s second birthday, my signing of a book contract, and the publication of Rachael’s book, Writing to the World: Letters and the Origins of Modern Print Genres. In her research into the new literary genres like the newspaper, novel, and biography that emerged in the eighteenth century, Rachael had had a profound insight: their early iterations were all heavily dependent on letters (correspondence) for their structure, and that, she argued, was because the familiar genre of the letter was helping readers transition from the old world of manuscript to the new world of print. It was a brilliant piece of scholarship that guaranteed her a successful career as an English professor. Because we knew that we would soon lose my income, her success brought us important peace of mind for the long term.

  Although Rachael’s career was flourishing, life at home was becoming more difficult for her. Carl was in prime toddlerhood, making constant not-always-rational demands on her. In the evenings, after a full day of teaching and research, Rachael needed to feed us dinner, get Carl bathed and asleep, and then repeat much of the process with me. I could no longer brush my teeth, shave my face, or clean myself after using the toilet. I needed help getting out of my wheelchair, into my pajamas, and into the living room recliner, where I slept. Could she please bring me a bottle of water? Oh, my laptop needs to be plugged in: Would she mind? Oops, I dropped my phone: Could she come get it? During the nights, uncomfortable and too often short of breath, I moaned and grunted loudly, using increasingly elaborate handholds and maneuvers to turn myself over. It woke her up and kept her awake. With each month, as my symptoms worsened, Rachael’s duties expanded, her personal time vanished, and our romantic partnership morphed into more of a unidirectional caregiving one. In the early weeks after my diagnosis, Rachael had urged us both to stay in the moment and enjoy the good life we still had; as our lives became harder, that strategy became more difficult to execute.

  In the spring of 2018, we also welcomed into our home a set of new faces. The filmmaker Nicholas Bruckman told us that he wanted to make a documentary about me, so Rachael and I let him and his cinematographers record our domestic life, warts and all. My first home health aid departed for a full-time job but found for me an incredible replacement: Laura, a middle-aged sailor who lived on her small boat in the Santa Barbara marina and brought dignity and purpose to every small act of caregiving. I was grateful for her emotional intelligence, because ALS forced us to become so intimate so immediately. I also hired a new personal assistant to watch over me during the day and help me keep working and writing.

  Aiyana Sage was in her late twenties and had moved to Santa Barbara because she loved the laid-back, crunchy, earnest, creative artist community she had found here. She typed fast, paid attention to details, cooked a delicious roast chicken, designed beautiful social media graphics, made Carl laugh, and didn’t make me feel embarrassed when I needed her to unbutton my pants in the living room and then empty my plastic handheld urinal.

  Meanwhile, my comrades and I had developed a theory for how we might impact the midterm elections. We would replicate our Arizona adventure in swing districts across the country, trying to inspire more progressives to volunteer on campaigns and shooting advertisements to persuade voters that the Republican Party was bad for their health. I had been invited to give a couple of major speeches in Detroit and Minneapolis in July, so Liz Jaff and I began to plan a three-state road trip through Minnesota, Wisconsin, and Michigan. But our appetite for narrative drama soon got the best of us, and after spending a few days examining lists of competitive House races, we decided to embark upon a six-week, twenty-state trip, from California to Maine, in a wheelchair-accessible RV. The audacity of the excursion was precisely the point. I would try to set an example for others to follow, throwing my whole body and soul into the election. If the stakes for our democracy were in fact monumental, then nothing less would be appropriate.

  There were a thousand and one details to work out. First, we identified thirty congressional seats held by Republicans that Democrats could plausibly win; we focused on the tier 2 races that were more difficult than the tier 1 “toss-ups” where the Democratic Party was already heavily invested. Our goal was to broaden the playing field, creating more opportunities for upsets and a higher likelihood that we could win the 218 seats necessary for control of the House. Liz made a budget and started working the phones in search of funding. Helen Brosnan—a scrappy twenty-three-year-old feminist and Democratic Socialist with a vulgar sense of humor and an infectious laugh—designed an event calendar with community-based organizations and resistance groups in each of our target congressional districts. Nate flew up to Seattle and dropped $70,000 on one of the two wheelchair-accessible RVs for sale west of the Mississippi. There were RV campgrounds to reserve, T-shirts to design, press releases to write. We decided to call this the Be a Hero tour, as an allusion to my plea to Jeff Flake that he put country above party. And Liz filed the paperwork for the Be a Hero PAC, which would help us do the work.

  Most concerning to me was the state of my voice. Every week it was softer, my diction more jumbled. Would I be able to inspire my audiences into action? Would I even be understood? I made a backup plan. Jennifer Epps-Addison, the president of the Center for Popular Democr
acy network who had been by my side during the conversation with Janet Yellen, agreed to join us for long stretches of the trip. She was a former public defense attorney and worker organizer, and had the charisma and the vision to take over my speechifying duties if necessary.

  By mid-June, most of the pieces were falling into place. And then the news broke that the Trump administration was forcibly separating migrant parents from their children at the border with the explicit purpose of making the experience so horrific that other parents would refrain from seeking refuge in America. The backlash was swift and overwhelming. For the first time ever, the media stayed focused on an outrageous Trump policy, refusing to be distracted by other shiny new objects. Public opinion was so lopsided that even Republican politicians wouldn’t defend the practice. Immigrant rights organizers recognized that this was a novel opportunity: Americans were finally confronted with the cruelty of immigration enforcement, and they didn’t like what they were seeing. If we could bring large numbers of people into the streets, we might be able to force the White House to retreat and shift the contours of the immigration debate.

  On June 18, Ben Wikler, of MoveOn, told me that they were about to declare a national day of protest for the thirtieth and asked me if I would organize the Los Angeles event. I jumped at the opportunity, hopeful that we could build upon the many protests of the previous eighteen months and marshal the nationwide fury into landslide victories at the polls in November. Our national RV tour was scheduled to begin on July 1. This immigration event would serve as a perfect kickoff.

  I didn’t have relationships in the Los Angeles progressive movement, but I knew plenty of people who did. Within a few days we had an executive committee of strong institutions sponsoring the rally, including Women’s March LA and the Coalition for Humane Immigrant Rights of Los Angeles. An event-production maestro from Hollywood volunteered his services, and we started holding daily ninety-minute coordination calls to secure the permits, contract for a stage and sound, create a speaking program, roll out a media plan, and, most important, gin up thousands of attendees. My job was to make sure that all the balls stayed in the air. I spent all week on the phone, pacing around the house in my wheelchair. My voice could still manage to moderate the calls, but I had to be more intentional and succinct with my words. By the eve of the event, we had 25,000 RSVPs on Facebook and a great lineup of speakers, including immigrant and faith leaders, California politicos (Eric Garcetti, Kamala Harris, Gavin Newsom, and Maxine Waters) and celebrities (Chadwick Boseman, Laverne Cox, John Legend, and Chrissy Teigen).