‘You wear out’: How chronic illness grounds and inspires William Barber’s activism

Jack Jenkins/Religion News Service | 6/23/2022, 6 p.m.
Standing outside a church in rural North Carolina this spring, the Rev. William Barber II leaned on his dented and ...
The Rev. William Barber II walks with a cane in this photo taken last March at Greenleaf Christian Church, his home congregation in Goldsboro, N.C. Rev. Barber has spoken publicly about his battle with a form of arthritis known as ankylosing spondylitis that can lead to, among other things, inflammation and fusion of the spine. Once a burgeoning football star, he moves slowly, aided by his cane and sometimes several assistants. Photo by Jack Jenkins/Religion News Service

Standing outside a church in rural North Carolina this spring, the Rev. William Barber II leaned on his dented and scuffed wooden cane. With one powerful hand he pushed himself up and into the seat of a long black Chevrolet Suburban, then swung his legs in, using the cane, wedged against the door, as a fulcrum. The effort left him out of breath, his expansive chest heaving as he lay back in the seat, reclined to afford him space.

No sooner had an aide closed the door before a man from the church rapped gently on the window.

“Rev. Barber,” he said, “you’ve been a role model, an inspiration.”

Rev. Barber found a second wind. He thanked the man and wished him well, grinning widely and giving a thumbs up. As the man walked away, the pastor paused for a beat, dwelling in a small moment of silence before turning to a reporter.

“You heard about this report we’ve got coming out ... ,” he began, launching into a detailed 20-minute discussion of poverty as the car drove away.

Such is the rhythm of life for Rev. Barber, 58, a Disciples of Christ pastor and activist best known as co-chair of the Poor People’s Campaign, an anti-poverty effort bearing the name and the goals of the movement launched by the Rev. Dr. Martin Luther King Jr. shortly before his 1968 assassination.

Like Dr. King, Rev. Barber is lauded for his abilities as an orator and an organizer.

He has received standing ovations for his rallying speeches at the Democratic National Convention. He has led some of the largest and most visible direct-action protests in recent decades, sometimes leading to his arrest and days behind bars. He huddles with union organizers and fast food workers.

On June 18, the Poor People’s Campaign held a Mass Poor People’s & Low-Wage Workers’ Assembly & Moral March in Washington, an event mounted, Rev. Barber said, to “shift the moral narrative” in favor of poorer Americans. Hoping to draw as many as 250,000 to streets in the capital, Rev. Barber plans to demonstrate the power of low-income people to vote and speak up for their concerns and needs.

Organizing and protesting is hard work that would strain anyone, but Rev. Barber has spoken publicly about his battle with a form of arthritis known as ankylosing spondylitis that can lead to, among other things, inflammation and fusion of the spine. Once a burgeoning football star, he moves slowly, aided by his cane and sometimes a coterie of assistants.

After surviving an unsettling bout of COVID-19 in January, Rev. Barber reached out to Re- ligion News Service, saying he wanted to talk about his lifelong struggle with disease. But the conversations that followed turned out to be as much about Rev. Barber’s faith, his under- standing of community and his focus on his cause. His activism, he said, is accompanied by a theology that is deeply informed by the realities of disability and chronic disease, particularly for the poor.

It also draws from what his religious upbringing told him about body and spirit. “I was taught in my faith tradition that you don’t live life and rust out,” he said. “You wear out.”

At a Sunday morning service in March at St. James Church in Winston, N.C., the crowd is waiting for Rev. Barber. The guest of honor is the Rev. Della Owens, who oversees safety and security for Repairers of the Breach, another social justice nonprofit Rev. Barber founded. Rev. Owens, who also occasion- ally serves as Rev. Barber’s driver, is about to be installed as senior minister.

At last a text arrives, heralding Rev. Barber’s arrival: “Stretches took a little longer this morn.”

A few minutes later, the congregation came to its feet as Rev. Barber processed down the center aisle, the choir braiding the air with a hymn. His sermon, based on the New Testament’s Second and Third Epistles of John, drew a line connecting Rev. Owens with biblical figures who were “installed” by God for their own ministries.

Later, sitting back in the car, Rev. Barber explained why he was late to St. James. After getting out of bed most mornings, he performs stretching exercises for an hour and a half, sometimes longer.

“What ankylosis does is, it tries to close your chest cavity over time,” Rev. Barber said, arms wide to demonstrate one

of his exercises. He stretches his back as well, hoping to slow the damage the disease does to his spine.

“What’s happening is, it’s deteriorating,” he said.

First diagnosed in the early 1990s, his illness is exhausting and often briefly debilitating. Some days his eyes “turn red,” he said, and he loses his vision. Inflammation in his neck, spine and hips causes immense pain throughout his body.

In quieter moments, his low baritone can grow thin and hoarse. His medication can drain his energy. As we were driven around Goldsboro in March, Rev. Barber was often animated, gesticulating passionately, but at times he mumbled as his eyelids fluttered. Once, he perked up midsentence, asking if he’d fallen asleep.

Yet Rev. Barber almost never stopped talking. Eyes closed, he continued to answer question after question, citing precise statistics, about politics, theology and the child tax credit.

Rev. Barber’s home congregation is Greenleaf Christian Church, in Goldsboro. Big-name pastors usually run big-name churches, the kind with their own coffee bar and store. Greenleaf, while modern, is small. The nearest business is a Dollar Store across the street.

But Greenleaf’s size belies a much larger vision for ministry, Rev. Barber said. He pointed to the Dollar Store as a testament to those efforts, explaining that it appeared only after the church and its partners built a series of homes in the area, as well as a senior citizen complex. They have aspirations to add a center to serve people living with HIV.

Greenleaf, Rev. Barber noted, also embraced him with his health issues. “For 12 years, in this church right here, I was on a walker and in a wheelchair,” he said.

Many of the sermons and speeches he delivers in front of national audiences, he said, are delivered to Greenleaf’s congregation first. “Here is home,” he said, walking past the sanctuary’s stained glass windows. “Here I’m part Pentecostal, part professor. Here, I’m free.”

He grimaces as he talks. Something inside him is acting up, swelling from all the activity. He acknowledges it, then presses on.

“When I got up to preach, I didn’t hurt, mystically, or whatever you want to call it,” he said. “I came from a people who said: ‘You fight on. You walk by faith and not by sight. You don’t quit. You be steadfast.’”

He said he found comfort in learning that prominent leaders have suffered their own health issues: Abraham Lincoln and Franklin D. Roosevelt, the activist Fannie Lou Hamer. Biblical figures such as Moses struggled with speech.

“I don’t know if I’ve got five more years, 25 more years, 50 more years — well, I probably don’t have 50,” he said, laughing. “But I tell you, my commitment for the rest of my life — until I can’t go anymore, if the pain says I can’t, and even then I’m going to find a way to still do something — is to be with those in this country who every day have inflicted upon them the restrictions of a democracy that’s full of the arthritis of inequality. The pain of racism, and classism.”

Rev. Barber said his cane is a reminder of where “the movement” has taken him. In recent years, he helped assemble groups to protest the Republican-led effort to repeal the Affordable CareAct. He held a presidential candidates forum in 2019 that drew nine White House hopefuls — including the eventual winning ticket, Joe Biden and Kamala Harris. Rev. Barber has led major demonstrations in Arizona, West Virginia and Washington to urge Sens. Joe Manchin and Kyrsten Sinema (unsuccessfully) to pass voting rights bills and eliminate the filibuster.

“This cane has marched in marches,” he said, holding up the wooden staff. “It’s been in the jailhouse. It’s been in the White House. It’s been in the Senate confirmation hearings. It reminds me of when I couldn’t walk.”

Rev. Barber uses his own health issues, and his adequate health care access, to talk about how many lack it. “I have certain pains, but I can’t imagine what people who have pain and then, on top of that, have to deal with low wealth and lack of health care,” he said.