by Ady Barkan
But for some immigrant rights advocates, that was precisely the problem. The ICE out of LA Coalition and Black Lives Matter Los Angeles were engaged in high-profile disputes with Los Angeles mayor Eric Garcetti for his refusal to rein in the police department or disentangle it from federal immigration enforcement. Instead of holding a disruptive, transgressive protest, our critics argued that we were putting on a shiny PR stunt. These are the tensions that inevitably arise when doing movement work: how broad to make your coalitions, how radical to make your demands, which opponents to target when.
Seventy-five thousand Angelenos turned out on that sunny Saturday morning, more than at any of the dozens of other protests around the country that day. I had never spoken to a crowd a tenth that size, but my mic check went smoothly. The Trump administration did indeed back down, agreeing to stop separating families at the border—but only by locking up everyone, including the kids, and with an appalling reunification process that left many young children separated from their parents for many months, and some never reunited. Our movement had failed to meaningfully change the dynamics of the immigration debate or deliver a knockout political blow to the Republicans. But we had helped bring together the progressive community in Los Angeles in one more act of resistance. Southern California would be a critical battlefield in the effort to win the House and stave off American fascism. So it had been a worthwhile exercise.
CHAPTER TEN
HOPE
Our six-week cross-country tour left from Santa Barbara on July 2. These are my recollections from the road.
Late at night, July 3, 2018
Sparks Marina RV Park, Reno, Nevada
Carl had sprinted into the playground, free at last after a long morning in the Big Red Truck. I followed close behind, desperate for any semblance of shared physical activity with my toddler. Ten yards in, I realize that it was a mistake to drive my 350-pound wheelchair onto a patch of wood chips, because now I was stuck. In the hot sun. In some playground off the freeway in the middle of California’s Central Valley, hundreds of miles from our destination. We’re on Day 2 of our six-week road trip, and it is not off to a promising start.
Rachael tries to push, but the wheelchair won’t budge. I will have to get out, to lighten the load, and walk over to the concrete sidewalk. Tracey, the Center for Popular Democracy’s director of racial justice campaigns, entertains Carl while Rachael gets my walker from the van. She helps me stand, Carl screaming for her attention. She tries to push the wheelchair again. Nothing. “Put it in manual mode,” I say, trying to look behind me without falling over. “Down there, near the front wheels.” Rachael puts her back into it, and finally the thing inches forward. There’s no way she can get it all the way to the concrete by herself. Tracey comes to help. Carl can tell how stressed we all are and is crying for someone to play with him. I stand hunched over my walker, trying not to fatigue, watching the women sweat every push. They manage to get to the concrete edge but then realize that its lip is too big. They’ll have to actually lift the monstrosity up. “Ask that man over there for help!” I shout, my weak voice barely making it to my audience. Finally, they get the wheelchair onto solid ground. Phase 1 complete. Phase 2 won’t be any easier. With Rachael spotting me, I try to make my way across the wood chips. But the walker won’t scoot on this terrain and my left foot is in complete rebellion. It refuses to bear any weight, twisting and collapsing instead. Carl is crying, Rachael is stressed, I’m in pain. Tracey and Rachael grab me from both sides, my arms around their shoulders, and we drag/stumble across the playground. Exhausted, I collapse into my wheelchair. “Well, that wasn’t a good idea,” Rachael tells me, rubbing salt straight into my wounded psyche. This is what I get for trying to approximate being a father chasing his son on the playground.
It’s now midnight. Rachael and Carl are asleep in the RV’s bedroom and I’m out here in the living room in my recliner. Nate is at my feet on the pullout sofa. We’re in the finest RV park Reno has to offer. Tracey drove us in the van all day—including that hour-long search for a walker to replace the one we left standing in the playground—and then over and down the Sierras in the dark. We knew today would be an epic drive, but I was foolish to compare it to the long drives Rachael and I made in our twenties. That was a different life and we were very different people. Nate was right to be concerned, right to insist on a very early start. Have we bitten off more than we can chew?
We can’t lose faith yet. Besides, yesterday was good. The local ABC affiliate and USA Today both covered our announcement of a class-action lawsuit against Health Net for its mistreatment of clients like me. And we had fun bringing a delegation of two dozen angry constituents to Congressman Steve Knight’s offices. His staff certainly made fools of themselves, and our activists seemed energized and grateful for our participation. Hopefully Liz and Nick got some good interview footage. Tomorrow will be more relaxed, and once we get to the Midwest, the driving will ease up considerably.
Early afternoon, July 5, 2018
Somewhere in remote northeast Nevada
We’re cruising down I-80 at a cool 63 miles per hour and my enfeebled neck is grateful to the enormous tires and shocks on our thirty-three-foot 2006 Thor Motor Coach Four Winds Windsport 35W, which are making this a very smooth ride.
Nate is steering the large wheel with his forearms. He tired of my Grateful Dead playlist, so I put on some honky-tonk and now he’s in a thoroughly good mood. All of us are. That lunch was delectable. Who knew that immigrants from Basque country came to the foothills of the Sierra Nevadas in the 1860s in search of gold and that their descendants are still serving up mouthwatering grilled meats and vegetables in the region’s quaint dusty mining towns today? Nate Smith knew, that’s who. I haven’t eaten a steak so good in a decade. And that onion soup was incredible, even though Rachael had to feed it to me out of a glass and I still made a big mess. She and Carl are conked out now on the sofa next to me, his car seat strapped down with a seat belt. Speaking of which, Nate’s jerry-rigged system for tying down my wheelchair with four motorcycle straps is working great. He is definitely winning the road trip MVP award so far.
Bedtime, July 7, 2018
Salt Lake City, Utah
I stand up out of my wheelchair and lean on my walker. Nate steers the chair backward and stands behind me, his hands on my hips. I take a baby step toward my recliner. “I wonder what the hell we’re really doing here,” I say. “I kind of think that maybe this whole thing is an elaborate vanity project to make me feel better about myself before I die.”
Nate mocks me with the same sarcastic voice that he’s been using for twenty years. “No, no, that can’t possibly be true.”
My laughter throws me off-balance. “No jokes!” I yell, totally seriously.
“No jokes!” he replies, which just makes me laugh more. If I’m looking for simple psychological support, Nate is in no mood to provide it. Instead, he’ll provide me with what I really need: physical support, wise counsel, and humor, with all the complexity that that entails.
Two months ago, at the end of our trip to Arizona, Georgia, and New York, Nate and I began discussing the idea that he and his partner, Sarah, would move to Santa Barbara in the fall so that he could help take care of me as I moved toward complete paralysis. It is a stunning display of allegiance. I have tried not to get my hopes up, but he seems increasingly confident that the plan will work out. Sarah has even given notice at her restaurant. This comes as a tremendous relief to me and Rachael, because we are so comfortable in his presence and will be so desperately in need of reliable support.
Nate went through some hard times in college, and I, two hundred miles away, was not there for him. I spent the ensuing decade trying to atone for my error, calling him every time I was in town, texting to see how he was doing, not getting annoyed or giving up when he went into hiding or failed to reciprocate. After my diagnosis, Nate sat on my sofa and wept apologetically, promising to be a more attentive friend. It took eigh
teen months for him to make good on that commitment, but this year, like a character out of Scripture, he is putting his full spirit into service. The notion that he would leave his Pasadena home and put aside his studies to clean and lift and clothe and feed my limp body—and cook for and teach and tease Carl, since I cannot—well, that notion gives me peace and overwhelms me at the very same time.
We get me in my recliner and Nate takes us through the full routine: pills washed down with Muscle Milk, tooth brushing, face washing, a bottle of water, a charging iPhone, an empty urinal, a blanket, and one milliliter of CBD/THC tincture. He unfolds the sofa bed, does his own toilette, turns on his reading light, and climbs under the sheets at my feet. Ten minutes go by. It is quiet. I feel my body twitching, the flimsy muscles on my limbs and torso firing off in rapid succession, too quickly for me to even count. My body does this all day every day. To a healthy me, it would have been torture, but now it is the most benign of my symptoms, going unnoticed unless I am perfectly quiet and attentive. Five more minutes go by. I ask Nate what he’s reading. Saint Augustine’s Prayer Book. I ask him to read me an excerpt.
“ ‘Let me set aside the day’s work,’ ” he reads calmly and deliberately, “ ‘with its disappointments or accomplishments, tasks accomplished or those that remain to be done; let me leave all this aside, so that none of it will distract me from those I love and who love me. You have given me work to do for the greater good, and you have given those closest to me to love that we might find joy in each other. Give me wisdom to respond to your call in both and to receive them both as gifts from your hand. Amen.’ ”
We sit in silence. And then I start crying. A lot. With four simple sentences, he has captured the full richness of our relationship, my personal philosophy these past two years, and our cross-country political pilgrimage this summer. I try to tell him how grateful I am for his love and support and his tremendous commitment of more in the months to come. I cannot get the words out. But he understands nonetheless.
Early evening, July 10, 2018
Des Moines, Iowa
After two more long days of driving, we’re in Iowa, and the trip is finally feeling productive. The thirty activists who turned out for our strategy meeting seemed genuinely grateful that I was there; the local organizer said he never gets such a good turnout for a midweek midday event. We’ve all felt pretty pessimistic about the future of our country ever since Anthony Kennedy announced he was retiring from the Supreme Court two weeks ago. So it was great to go around the room today and hear from everybody what is making them hopeful right now. There really is a lot of good organizing happening, and it looks like two or maybe even three of Iowa’s four congressional seats may flip from Republican to Democratic in November.
The forum about caregiving in the afternoon was really intense. I hadn’t planned to talk about my parents—about how I had expected to care for them, not the other way around—and I certainly hadn’t intended to start crying in the middle of my remarks. My voice becomes difficult to understand when I’m upset, but, judging from the standing ovation, I think they got the gist of what I was saying.
Tomorrow should be fun. Liz found out that Mike Pence is coming to town for a fund-raiser and a “policy” speech. She wants to dress me up in MAGA attire and try to infiltrate the event. Ha.
3:00 p.m., Friday, July 13, 2018
The Hilton, Minneapolis, Minnesota
All right. We’ve hit our stride. Last night, at a community town hall about Medicare for All, Congressman Keith Ellison leaves me blushing and speechless when he compares me to Congressman John Lewis. This morning, at a rally headlined by Bernie Sanders, from the stage made famous by Prince in Purple Rain, I get to give a speech to 1,500 cheering progressives. Liz initially had thought it would be a mistake to deliver a lengthy peroration on democracy and activism and the state of our nation, but even she acknowledged afterward that the energy during my closing mic check was incredible. Backstage, I told Bernie it was an honor to struggle by his side, and he gave me a hilariously awkward hug. But I’ll cut him some slack, since hugging someone in a wheelchair is tricky for anybody.
It’s nice to be staying in one city for a few nights in a row. But I’m jealous of all my friends who are getting to enjoy the Hilton’s clean sheets and firm mattresses. It’s too laborious for me to do the same. A hot shower is so therapeutic, but it’s become such an ordeal that I’m inclined to just stick to sponge baths. At least we found a physical therapist who will come to my room in a couple hours. My muscles are tight as fuck.
Tomorrow I’m spending the day at the Local Progress national convening and speaking at the closing session. It’ll be great to see old friends and the new staff that Sarah has hired. I imagine that I’ll be treated as an elder statesman, which makes me proud and furious at the same time.
Sunset, July 21, 2018
Haas Lake Park RV Campground, New Hudson, Michigan, an hour northwest of Detroit
When we set out on this adventure, we predicted that our time in the Midwest would be a highlight. It hasn’t disappointed. We’ve spent time with some visionary congressional candidates, including two who will likely become the first Muslim women in Congress. (Ilhan Omar, running to replace Keith Ellison in Minneapolis, is brave enough to call for a reduction in our nation’s military spending—a thoroughly obvious and smart policy proposal that remains verboten in Washington, D.C. And Rashida Tlaib, running to represent Detroit, wants to rejuvenate federal civil rights law by clarifying that it prohibits disparate impact, not merely disparate treatment.) We’ve witnessed brilliant young black community organizers offer their members trenchant critiques of our political substructures and comprehensive prescriptions for building sufficient power to change these realities. Abdul El-Sayed, a thirty-three-year-old epidemiologist running to be governor of Michigan, brought three hundred suburbanites to tears talking, with Obama cadences, about the bond that he and I have built this year based on the dreams from our fathers and our shared dreams, as new fathers ourselves. I got a standing ovation from 5,000 letter carriers for my speech at their union’s national convention, which included a wholly unconventional extended summary of Rachael’s recent book, laying out the central role that postal routes and letter writing played in the development of modern literary and political culture. We stuffed ourselves with Detroit barbecue and Milwaukee cheese curds, drank Pabst Blue Ribbons in Racine, Wisconsin, on the shore of Lake Michigan, and said “No, thank you” to Chicago’s version of “pizza.”
Now Nate and I are relaxing, the familiar synthetic melodies of the War on Drugs serenading us and the warm sunset. A week of lower-profile events awaits us, after which we’ll hit our trip’s crescendo in Philadelphia, D.C., and New York, and our denouement in New England.
Late at night, July 21, 2018
KOA Holiday Campground, Lebanon, Ohio
We are in my old stomping grounds, the conservative suburbs of Cincinnati, where I came for my first job after college to try to help Democrats win back the House. I’m here again a dozen years later with the same purpose. Vic Wulsin, my erstwhile candidate, came to my breakfast event this morning; unlike me, she hasn’t aged. We forgot to bring my headset and portable amplifier, and my audience of thirty had great difficulty hearing me until one proactive grandma had the good sense to unplug the whirring commercial refrigerator in the corner.
Now I lie in my recliner, totally stoned and totally clearheaded. There is no escaping the reality of what is happening to my voice. Every week it is less audible and less intelligible. Every week more people are staring at me blankly. Asking me to repeat myself. Or, worst of all, pretending they’ve understood. Losing my ability to speak is far worse than losing my ability to walk or type. Ever since I was an only child holding forth at the dinner table to an audience of professors, I’ve been enamored by my own voice, enchanted by the prospect that others would be persuaded by the force of my rhetoric. And now, at thirty-four, I am losing my greatest power.
&nb
sp; For twenty years, since I was a freshman in high school, I have been writing op-eds and giving timed speeches—first on the debate team and at thespian festivals, later at press conferences and in community-organizing meetings. But never before have I felt so acutely the constraining force of my word-count limit. I know intuitively how many arguments I can fit into eight hundred words. I know when my three minutes are up, even without looking at my watch. But now, facing my final months of speech, the questions that I was taught to ask in high school have taken on new meaning: What do I want to say? To whom? And how?
I realize now that I’m on this tour in pursuit of answers, not only to these personal queries, but also to our national ones. What kind of a country will Carl’s generation inherit? And what will it take over these coming precious months to save our democracy? Everywhere I go, I’m meeting citizen-activists who are grappling with these very same questions, pouring their beings completely into crafting tolerable answers. Some, like me, are dying and are campaigning to win this November’s elections because they know it may be their last chance. But many others with longer life expectancies are doing the same thing. It turns out that our collective time horizon is the same: we peer into the future and hope that our children’s children will grow up in a more just and equitable society.