Obituary: Activist who brought attention to post-polio syndrome dies

From The Boston Globe:

The pain Paula Brown (pictured) felt was at once hauntingly familiar and frighteningly new, rekindling memories of when she was diagnosed with polio at 2.

"The first time it really affected me was when I could not lift my grandchild," she told the Daily Item of Lynn in 1989.

"My daughter was her first grandchild," Faye Brown of Minneapolis said in an interview. "I remember she had a lot of difficulty holding her. My mother's arms really hurt and she cried, saying, 'I can't pick her up.' "

In July 1985, Mrs. Brown had opened The New York Times Sunday Magazine to an article about people who had survived polio as children, only to be afflicted by similar pain decades later. "Medical professionals have begun to refer to the condition as 'post-polio syndrome,' " she read.

Mrs. Brown, who met with others a few months later to found the Greater Boston Post-Polio Association, died Dec. 10 in Bellingham, Wash., where she moved to be close to a daughter. She was 84 and had lived most of her life in Malden and Cambridge.

She was only 4-foot-10 and wore braces to walk, but Mrs. Brown nonetheless was a forceful presence. A social worker and psychotherapist, she raised her voice often to promote peace and chastise politicians who cut funding for the poor.

Post-polio syndrome was a new challenge. Though no definitive treatment has been found, she knew people like her needed a place where they could seek ways to mitigate the damage and, just as importantly, find an understanding ear.

"It helps a lot to learn that you are not crazy and that you are not alone," Mrs. Brown told the Globe in 1987, when the first clinic to diagnose and treat post-polio syndrome opened at Spaulding Rehabilitation Hospital in Boston.

"We were able to get a clinic going, which was really unheard of back then," said Elaine Burns of Weston, another founder who served for 19 years as the first president of the post-polio association. "A lot of that was through Paula's perseverance."

The clinic, Mrs. Brown hoped, would give others quicker answers. When her symptoms appeared, doctors first suggested she was suffering from depression or the early signs of amyotrophic lateral sclerosis, known as Lou Gehrig's disease.

"My mom would never let you know the amount of pain she was in, and I'm sure it was constant for most of her life," Faye said. With post-polio syndrome, "the pain in her hands and shoulders and arms was intense. She was a knitter and by the early '90s, she couldn't knit any more."

Mrs. Brown was accustomed to enduring indignities. As a child, she was called a cripple. As an adult, children made fun of her in supermarkets, mimicking the way she walked with braces.

"But she had a tremendously huge heart and spirit, and amazing resilience," her daughter said.

Born Paula Ruderman, she grew up in Malden, where her father ran a furniture store. Her mother and grandmother had immigrated from Kiev, fleeing Russian pogroms, in which Jews were massacred.

"I had polio as a baby," Mrs. Brown told The Daily Item. "They treated me for an ear infection until my grandmother picked me up one day and found my legs were all rubbery."

After a correct diagnosis, "she had numerous operations and was bedridden for a year," her daughter said.

Putting convalescence to use, Mrs. Brown read steadily and graduated from Malden High School in 1941, when she was 15. Studying English at Tufts University, she graduated with a bachelor's degree in 1945.

At the Boston University School of Social Work, where she received a master's in 1948, one classmate was Rohna Shoul of Newton, who remembers what Mrs. Brown faced each day when she arrived at her job with the Red Cross in Boston.

Fluent in Yiddish and French, Mrs. Brown worked with European refugees from World War II, but first she had to climb an iron spiral staircase to reach her office.

"I remember wondering, 'How does she make it every day?' But she did," Shoul said. "She had a very up personality, and no matter how much she struggled, she lived to the fullest. There wasn't too much that she gave up. She didn't just sit back and let invalidism take over."

Living at home with her parents in Malden, she met Aaron Brown when he arrived one day to fix the family's broken television. They married in 1956.

Doctors had told Mrs. Brown she might never have children because of the damage polio wrought. Instead, she had twins -- a boy and a girl -- then a second daughter.

When her children were older, Mrs. Brown returned to work and began studying for a doctorate at the Boston Center for Modern Psychoanalytic Studies -- now the Boston Graduate School of Psychoanalysis. Mrs. Brown didn't finish, her daughter said, because she found Sigmund Freud's views of disabled people "too skewed."

Driving a car with hand controls, Mrs. Brown commuted for many years from Malden to a community health center in Lynn, where she led group therapy and saw individual clients.

Her husband died in 1986 and she retired about a decade later, when she was 71.

"My mom identified with anyone with pain in their life, whether that was emotional pain or physical pain, and she especially identified with children," her daughter said.

Mrs. Brown, who survived breast cancer in the mid-1960s, became a peace activist in the early '80s, before helping found the post-polio association.

In 1983, the Massachusetts chapter of the National Association of Social Workers presented her with its award for the greatest contribution to social policy and change for helping found the advocacy group Social Workers for Peace and Nuclear Disarmament.

Testifying before a state legislative committee in March 1981 in support of a proposed "jobs with peace" resolution, Mrs. Brown was as emphatic an advocate as she would be in subsequent years on behalf of those struggling with post-polio syndrome.

"Social workers decry the arrogance of the Reagan administration that puts the destructive potential of terrible new weapons before the human potential of our people," she testified.

Lawmakers, she added, must "step toward the reaffirmation of the dignity of all life and the necessity of peace."