Leading with empathy, disability advocate has given PACER Center a global reach

When Paula Goldberg was little, her mother would take her along when visiting the Rochester State Hospital — people called it "the mental hospital" — to bring food and other gifts to patients. At the Mayo Clinic, where her mom managed doctors' offices, she'd sit among children with maladies serious enough to seek help at the famed center.

Her mother also was a Yiddish interpreter for patients from elsewhere — whom she then would take on drives, "just to show them the town," Goldberg said. "My mother was an amazing person."

Such exposure to helping the less fortunate kindled in Goldberg a desire to make a difference.

"One of the goals in my life is to help others," she said. "As a child, I knew this."

Today, Goldberg oversees PACER Center, which she co-founded in 1977 to help parents whose children have physical, mental or emotional disabilities. No longer a Minneapolis storefront with castoff steel desks cajoled from 3M Co., PACER now reaches around the world from its Bloomington headquarters, responding to more than 44,000 requests for assistance annually.

"We say that Paula is like a Venus flytrap — she sees you and latches onto you and sucks you in," said Kathy Graves, who discovered PACER for her son, Sam, when he developed cerebral palsy soon after birth.

Goldberg's vast influence is accompanied by a minuscule ego. She's a master at sidestepping the limelight. At PACER's annual fundraiser galas with their celebrity headliners — this year's featured Crosby, Stills & Nash — she has never appeared on stage, only standing briefly in the audience.

If you weren't paying attention, you might wonder whose grandmother is waving, with her just auburn hair and aura of a particularly comforting matzo ball soup.

"That just isn't me," she says, nudging the conversation away from any semblance of saintliness to the point that this simply is a matter of respect.

"I think respect and empathy go together," she said. "We're teaching parents of children with disabilities to become self-advocates, and advocacy isn't about empathy as much as it's about strength."

Although Goldberg is reluctant to talk about herself, the people she's encountered are more than happy to sing her praises.

"She's demanding, in a good way, and not afraid to ask," said Graves, who found herself working a fund­raiser before she knew it.

Graves and her husband, Hazen, took Sam to a computer lab open house at PACER, where its "lending library" proved to be a godsend — as did Goldberg. Today, Sam is a senior at Augsburg College in Minneapolis. His first internship was in PACER's technology center, where Goldberg was as demanding of him as any employee, Graves said.

"She doesn't care that his right arm doesn't work because she knows his brain works just fine."

"She just sees people," Graves added. "I've never met anyone that gifted in connecting the dots, and showing her kindness. Empathy is such a good word for her."

How does this happen?

Why are some people compelled to help others, just because the need exists?

What is the nature of empathy? What made Paula Goldberg who she is today?

Helping parents to help parents

Goldberg first worked as an elementary school teacher in Minneapolis, then in Chicago, where administrators soon discovered her particular understanding of students with special needs. Knowing that empathy doesn't take the place of expertise, she pursued more education, and was accepted by the University of Chicago's School of Social Services as a graduate student.

But with the birth of her first son in 1967, she became a full-time mother. A second son followed in 1971.

She was active in the League of Women Voters, which continued when the family returned to Minnesota, where her husband, Mel, began teaching at William Mitchell College of Law in St. Paul. For the league, she led a study on special education in public schools. She became more aware of how easily parents could be overwhelmed — or overlooked — when decisions were made about their kids.

Then in 1975, President Gerald Ford signed legislation that guaranteed every disabled child equal access to an education. It was a watershed moment. In disability circles, it's simply called "the Law."

In 1976, Paula Goldberg met Marge Goldberg (no relation), who was lobbying at the Legislature on behalf of the Learning Disabilities Association. Teachers were being taught how to navigate this new world, but parents also needed help. Paula said that she and Marge knew that parents were the best mentors for other parents, "yet this was a departure."

The duo formed PACER, the Parent Advocacy Coalition for Educational Rights, as a coalition of disability groups. With a state grant of $20,000, they did 21 workshops in the state that next spring.

Now that her sons were in school, Goldberg had been thinking about going to law school, and was accepted. With typical confidence, she figured that handling that and PACER seemed doable. "I thought after three years, we'd have serviced all the needs of parents with disabilities in the state of Minnesota," she said, with a wry smile at how ridiculous that goal sounds today.

Fact is, she was growing worried about law school's effects on her young family. She knew that letting that dream go would give her more flexibility, "yet for me it was important that I work," she said. "And I think that's true for many women."

So Goldberg began raising PACER, along with her sons.

A legacy from tragedy

Psychological studies have shown that people are "hard-wired" for empathy. The more closely we get to know people, the more we become attached to them, and the more we can put ourselves in their shoes.

One study at the University of Virginia tracked the brain activity of young adults when threatened with mild electrical shocks delivered to themselves, or to a friend or stranger. When students viewed a stranger under threat of being shocked, their brains displayed little reaction. But when a friend was threatened, the students reacted as strongly as if they themselves were in danger.

Goldberg saw her mother treat strangers as if they were friends, and that experience directed Goldberg's life. So it's not a stretch to learn how her own sons observed their mother's empathy and applied it to their lives.

What's tragic is how Goldberg learned of her influence.

In May, her 47-year-old son, David, died unexpectedly while on vacation in Mexico. He was chief executive of the online-questionnaire provider SurveyMonkey and married to Sheryl Sandberg, chief operating officer of Facebook and author of the bestselling book "Lean In," about women in the workplace.

At her son's memorial service, Goldberg was overwhelmed by the number of people who approached her with stories of how her son had helped them.

"They described him as being so kind and good," she said. While perhaps not unexpected news, "he'd never said anything about that to me, all the people he'd helped. I had no idea."

In a 2012 New York Times article, David Goldberg paid tribute to his mother, recalling how he and his brother would help out putting on puppet shows "to teach schoolchildren that kids with disabilities deserved their respect and friendship."

While PACER's technology services have grown, the puppet shows remain important, she said, because kids will tell things to a puppet that they might not tell a person.

Today, PACER has parent centers in every state, and a bullying prevention program in more than 400 schools and organizations. Audits state that 85 percent of funds raised go directly to programs, far above industry standards.

Goldberg calls herself "a pragmatic optimist."

"As I always say to staff: You have to ask," she said. "I feel you can do things, and if you do them right, you can change the world."

Kathy Graves recalled how Goldberg helped her respond when some teachers would focus on what Sam couldn't handle. "She told me to start every meeting by stating what he can do, which really helped me as a mom," she said. "When you get the diagnosis, you don't want sympathy. That makes it almost worse. But empathy feels like she's saying, 'So you weren't dealt quite the hand you expected. How are we going to solve this problem?' "

Kim Ode • 612-673-7185