by Ady Barkan
Our crew of Latinx and black activists were particularly effective—in partnership with the many black members of the House Financial Services Committee—at forcing Yellen and the Fed to grapple with racial inequalities. In the July 2015 hearing, Yellen gave this unsatisfactory response to a question one of our allies posed about racial disparities in the labor market: “So, there really isn’t anything directly the Federal Reserve can do to affect the structure of unemployment across groups. And unfortunately, it’s long been the case that African-American unemployment rates tend to be higher than those on average in the nation as a whole.” She was washing her hands of any responsibility for the problem, so we quickly released a statement laying out the argument that Yellen was wrong—that full employment actually makes it harder for employers to discriminate and the Fed needs to be acutely attentive to the people who its policies are harming the most.
Then, on Martin Luther King Jr. Day in January of 2016, the respected economist and recent Fed president Narayana Kocherlakota published a blog post criticizing his former institution for having failed entirely to grapple with race. He read through the most recent publicly available transcripts from Fed deliberations (from 2010) and found that although African-American unemployment was a whopping 15.5 percent or higher throughout the year, “there was no reference in the meetings to labor market conditions among African Americans.” This was the powerful evidence we needed linking our two central demands: with not a single black or Latinx person among its nineteen key decision-makers, the Fed simply didn’t have the understanding or the perspective to set policy that reflected the interests of all Americans.
With Kocherlakota’s powerful critique in hand, we started pushing to get the Democratic Party behind a reform agenda for the Fed. Jordan worked with his contacts in the offices of Representative John Conyers and Senator Elizabeth Warren to draft a letter to Janet Yellen urging her to prioritize diversifying the Fed’s leadership. The message was clear: Fed Up was behind the Democratic Party’s newfound attention to the Fed, and ignoring our demands would mean risking the ire of Congress. We got 127 members of Congress to cosign the letter, including the entire Congressional Black Caucus and heavy hitters like Maxine Waters and Chuck Schumer.
Simultaneously, I was engaged in an ongoing courtship of the policy team on the Hillary Clinton presidential campaign. She was trying to fend off an unexpectedly strong challenge from Bernie Sanders in the Democratic primary and was eager to prove her progressive bona fides. Sanders had long been a critic of the Fed’s subservience to Wall Street, and I figured this was our best chance to get the next president on the record as supporting Fed reform. If she expressed support, it would be a powerful signal to congressional Democrats that they should work with us to craft and pass legislation in the New Year. Shawn, Amy, and I had visited the Clinton campaign’s bustling downtown Brooklyn headquarters to meet in a bland, windowless conference room with her policy director, Jake Sullivan, and three economics advisers all named Mike. We were pleasantly surprised that the Clinton team agreed almost completely with our substantive policy proposals. The problem, they explained, was that the political and communications teams on the campaign didn’t think voters cared much about the Fed and were reluctant to use scarce bandwidth talking about this issue. It became clear over the ensuing weeks that we would have to find some way to force the Clinton campaign to issue a statement.
On a Thursday in mid-May, I got up early so I could help with the media rollout of our congressional letter to Yellen. I brewed a pot of coffee and sat down with my laptop at the two-person high-top table in our kitchen, looking out a picture window on our back deck, modest backyard with potted succulents and an explosive pink bougainvillea, and the sun rising over the Santa Barbara mountains in the southeast. Rachael was still sleeping, her belly propped up with pillows, her due date three days away. Our lives were about to get so much richer and more joyous, our nights a good deal less restful, and our parents a lot more present. I couldn’t wait. But I also cherished this peaceful moment alone, with the warm cup of joe between my palms, sweet and milky and going down easy.
Jordan and Shawn had blasted out a copy of the letter and begun following it up with pitch calls to a few dozen Fed reporters. They told me that they were getting a good response and we could expect solid coverage. I texted a link to one of the Clinton campaign’s Mikes. He told me that this was a good time to try to get Clinton on the record supporting us. Could I get some reporters to call the campaign for comment? I quickly jumped on the phone with the Washington Post’s Ylan Mui. She had given the Fed Up campaign our first-ever article two years earlier and it was time to return the favor. She was excited at the prospect of scooping Clinton’s first comment about the Fed and thanked me for the tip.
A couple of hours later, Ylan’s article posted online. The headline was perfect: “Hillary Clinton to Support Federal Reserve Change Sought by Liberals,” it said, crediting us with moving her. The quote Ylan got from the campaign was even perfecter: “Secretary Clinton believes that the Fed needs to be more representative of America as a whole and that commonsense reforms—like getting bankers off the boards of regional Federal Reserve banks—are long overdue.” It was everything we wanted and more. Fed Up had been calling for legislative reforms to the Fed for only five months. Now the presumptive next president of the United States was calling them “long overdue”!
“Fuck yeah!” I texted Mike. “It’s a pleasure doing business with you.” Over the course of the morning, more and more articles popped up, linking the congressional letter, Clinton’s statement, and the Fed Up campaign’s advocacy. Over email and phone calls, our coalition celebrated our most impressive victory to date. We had moved the power brokers of the Democratic Party to embrace a dramatically more progressive vision for the nation’s central bank. I thought back again to the modest goals I had set on the phone with my father two years earlier. “When we fight, we win!” goes the union chant. It felt so true.
A month later, when she again went to testify in Congress, Janet Yellen had a different perspective on the question of racial disparities in the labor market: instead of saying they were not the Fed’s business, she highlighted them in her prepared remarks and said they should inform monetary policy choices. Embarrassed by Kocherlakota’s finding, the Fed adopted a practice of describing racial disparities at the beginning of each policy-making meeting; within the year the Fed would launch major research projects on race and the economy and appoint the first-ever African-American regional Fed President: Raphael Bostic, an economist with expertise in housing discrimination. It was now clear that our campaign was having an impact on Fed policy.
Three months after the Clinton campaign endorsed reforming the Fed, I would board that sunny flight to Jackson Hole, happier than I had ever been before: proud of my work and my role in society, in love with my wife and our newborn son, ready to embrace every ounce of the joys and challenges that stretched out in front of me. And then, one month after that, on October 1, 2016, Rachael and I had our fateful brunch with my friend Katy, where I complained that my left hand didn’t seem to be working properly.
CHAPTER SEVEN
PROGRESSION
Over the previous fifteen years, Michelle Smith had been the adviser to three successive Federal Reserve chairs, setting strategy and solving the political problems of the most powerful economic policy makers in the world. And now she was waiting for me, standing just outside of the majestic conference room where the Fed’s leaders meet to decide how they will steer the global economy.
In May 2017, trying to retain a semblance of normalcy despite my diagnosis with ALS seven months before, I joined a fifty-person delegation from Fed Up traveling to Washington, D.C., to once again meet with the most powerful woman in the world, Fed chair Janet Yellen, and her sidekick, Vice Chair Stanley Fischer. As in previous Fed Up meetings, most attendees were unemployed or working low-wage jobs. A few were economists at D.C. think tanks, and a handful were professi
onal organizers and rabble-rousers. Most were black or Latinx; a few were Asian. And a handful were white.
Once again we were going to push the Fed’s leaders to keep interest rates low in order to promote the creation of more good jobs and higher wages. And we would urge them to appoint African-American and Latinx leaders to crucial decision-making positions, to finally diversify the lily-white institution that had deprioritized the needs of people of color for so long. But we also had a new plea, with a very different flavor: Please don’t leave the Fed now and give President Donald Trump another seat to fill; sacrifice a few years of your retirement and help our country survive his tumultuous reign.
“It’s so good to see you, Ady,” Michelle said, smiling broadly and shaking my hand, both of us wordlessly agreeing to pretend that we hadn’t spent the past week jousting over the details of this parley, with Michelle threatening to cancel the meeting and me threatening to tell the press that the Fed had gone back on its word after dozens of poor people had requested time off from work and arranged child care while they traveled to Washington.
I had been fretting over this precise moment ever since we had scheduled the meeting six weeks prior. What would I tell Michelle when she saw me? Did she already know about my ALS, word trickling through the tight-knit Fed press and bureaucracy? Should I just pretend that everything was okay?
“Good to see you, too, Michelle,” I said. “Thanks for having us.”
“What happened to your leg?” she asked me, looking at the black brace that connected my shin to my shoe.
I decided not to get into it. “It’s just a medical issue.”
“But you’re okay, right?”
I wasn’t in the mood to lie by saying yes. And the truth was, I didn’t even want to keep it secret. I wanted her to know my pain. To ease my burden a little bit by sharing it. This disease sucks. It’s my personal tragedy. But if Michelle Smith knew, and Janet Yellen knew, and if they both felt sorry for me and agreed that it was a tragedy, then maybe that would be a sign that I was an important person. Maybe it would be a sign that I wasn’t about to just flicker out into darkness; that when I died in a couple of years, half a century before the actuaries had thought I would, at least I would have left my mark on this world.
“No, unfortunately not,” I said, my voice quivering noticeably. “I was diagnosed in October with ALS. Lou Gehrig’s disease.” I paused for a brief instant. Did she know what ALS was? I hadn’t in September. Most people hadn’t.
“I’m so sorry, Ady,” she said, but it wasn’t clear to me from the tone of her voice whether she knew that I was facing a pretty quick and certain death sentence or whether she just understood from my answer that something was seriously wrong
“Thank you. But that’s not why we’re here,” I said quickly, to cut the tension and move us on to other matters.
It was already 2:02 p.m., our meeting was supposed to start at the top of the hour, and the tight agenda that I’d painstakingly curated and prepped was on the verge of disintegrating. We had a minor clusterfuck of a problem: thirty minutes earlier, Reggie Rounds, one of the three low-wage workers who was slotted to give testimony during the meeting, had gotten into a heated argument with the Fed’s chief of security, and we’d been told that he posed a threat to Yellen and Fischer and couldn’t come in.
I introduced Michelle to Jennifer Epps-Addison, the thirty-five-year-old president of the Center for Popular Democracy network who was standing right beside me, and whose husband was back home in Los Angeles, battling progressive multiple sclerosis. “Jennifer was right there when the argument happened,” I said.
“I saw it all,” said Jen. “Reggie didn’t cuss, he didn’t raise his voice. All he said was ‘The Fed is the people’s bank; now let us in.’ And your security officer overreacted.”
Suddenly Janet Yellen walked up. I shook her hand. Jen shook her hand. And then, for three precious minutes, the two of us—activist lawyers with fancy credentials and fulfilling jobs in the movement whose hopes for happy lives had recently been destroyed by incurable neurological diseases—tried to convince the most powerful woman in the world that, rather than re-creating in miniature America’s obsession with over-policing the behavior of poor black men and then precluding their political participation, she should instead order her security guards to let into our meeting a chronically unemployed man from Ferguson, Missouri—whom she had met on two occasions before—so he could once again plead with her to set global economic policy that would prioritize his need for a job over the interests of the Wall Street financiers who had dominated Fed policy discussions for one hundred years.
Holy fuck. This was my life.
Our negotiation was inconclusive. Janet said little. Michelle said they would see what they could do but that we should start the meeting and maybe they would let Reggie in soon. We gave a copy of Reggie’s testimony to the St. Louis organizer who had brought him; she could read it on his behalf if necessary. The last dozen of our group were let in through security.
I went to the bathroom. I threw cold water on my face and patted it dry with a paper towel. I came out, and the hallway was almost empty and suddenly uncomfortably quiet; our delegation of fifty, plus a few dozen Fed staffers, had taken their seats inside the Board of Governors’ room.
Only Janet Yellen and Stanley Fischer remained outside. And as I limped from the bathroom toward the conference room, I could see the two of them speaking quietly, watching me intently from forty feet down the hall. Did they know that I was dying? Did I finally matter? Could our stories sway their decisions?
In May of 2017, other than my leg brace and my limp, I still looked healthy. At the Hyatt Regency Washington on Capitol Hill, where CPD was holding its annual gala, I stood around chitchatting about the early atrocities of the Trump regime, half listening to the speakers onstage. I could no longer manage to hold both a drink and a plate of food at the same time, but otherwise I was a normal partygoer. Some old friends from law school came and said hi, commiserating about my ALS and telling me about their newborn. I had been on my feet for six hours, and I was ready to leave. I grabbed my coworker Sarah and we headed out. On the escalator I told her that, for the first time ever, I was feeling out of breath.
“Is that something that happens to people with ALS?” she asked me.
“Yes,” I told her. “That’s how ALS kills you.” She rubbed my back, and we rode the rest of the way up in silence.
This was the unrelenting rhythm of ALS. A new part of the body became weak, a new symptom appeared, a new task became difficult or impossible. Sometimes you saw it coming, but sometimes you didn’t. Sometimes you’d made preparations and you could mitigate the damage, but sometimes you hadn’t, or sometimes you couldn’t. In the ALS community, this series of physical declines is referred to, unironically, as “progression,” which is exactly the wrong way to describe what is happening. My disease is advancing, I am decaying, and yet we refer to the pace of my “progression.”
The days when a new symptom appeared were the worst, I told the psychiatrist at Cedars-Sinai. Not only did the new symptom immediately make my life more difficult, but it was also a sign of things to come: it was another damaging data point in the scatter plot that would predict my paralysis and death. Some people lived with ALS for more than a decade; others died within a year. Each new symptom gave me more bad news about where I was on that spectrum.
The shrink, well versed in the mindfulness that I was trying to embrace, advised me to develop a routine on which I could rely in those difficult moments: Spend the evening doing something enjoyable with Rachael, like cooking a favorite meal or watching a reliably good show. Notice the cloud in the sky and then let it float by. Bring your attention back to where you want it.
Riding that escalator with Sarah, I thought about what my new symptom meant. Every few months, when I visited the ALS clinic, the nurses had me blow hard into a small handheld device that measured the volume of air in my lungs and the force with whi
ch I could push it out. The machine took that information, combined with my age and size, and spat out a percentage. The week after my diagnosis, my forced vital capacity was at 103 percent of what would be expected in a healthy man my age and size; it had declined to 80 percent by the spring of 2017. As my diaphragm became weaker and weaker, that number would continue to fall. Eventually, I would face a daunting choice: get hooked up to a ventilator that would breathe for me—but prevent me from speaking or eating—or let my breath become air.
But I wasn’t there yet, I told myself. Carl’s first birthday was only three days away, and we had invited most of Southern California over to our house for barbecue ribs and cupcakes. I said goodbye to Sarah and turned my eyes homeward.
A month later my father and I put away our work for the day and headed out for a late-afternoon constitutional. He had been a regular visitor from New York ever since Carl was born, and my diagnosis eight months earlier had only made his visits more frequent. The Westside of Santa Barbara is a quiet residential neighborhood, made up of modest two- and three-bedroom single-family homes that are insanely expensive by the standards of most American communities. Passing the assorted California cottages and Spanish stucco houses, we looked with admiration at the carefully constructed gardens. My favorites were the ones filled with elaborate cacti and colorful succulents.