Jun 5, 2015

Katharina Schroth Method for Treatment of Post Polio Scoliosis in

Katharina Schroth Method for Treatment of Post Polio Scoliosis in

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‘Jonas Salk: A Life,’ by Charlotte DeCroes Jacobs



Photo
Dr. Jonas Salk in his laboratory, 1954.CreditJonas Salk Papers, Special Collections and Archives, University of California, San Diego 
Nobody could recall a medical press conference quite like this one. On April 12, 1955, families huddled around radios, as if listening to the World Series or a championship fight. Crowds watched on television sets lining department store windows. Work stopped in offices and factories as word spread and tearful celebrations erupted. “Polio Is Conquered,” the headlines screamed. The vaccine developed by Jonas Salk, a 40-year-old University of Pittsburgh researcher, had been judged safe and effective following the largest public health experiment in our history.
Americans had long worshiped their athletes, inventors and war heroes — but a medical researcher? Salk was breaking new ground, whether he liked it or not. He’d become an instant celebrity, with all the baggage it entailed. A successful vaccine against polio, a viral disease that had paralyzed tens of thousands of victims, mostly children, seemed almost heaven-sent. At a White House ceremony honoring the achievement, President Dwight D. Eisenhower choked back tears as he told the young researcher: “I have no words to thank you. I am very, very happy.”
But not everyone felt this way. As Charlotte DeCroes Jacobs makes clear in her excellent biography, Salk’s public acclaim struck a sour note in much of the scientific community, where feelings of resentment and jealousy ran high against a ­media-created knight in a lab coat who hadn’t paid his dues. Try as he might, Salk would never fully gain the respect of his peers.
Jacobs, a professor emerita of medicine at Stanford, neatly splits “Jonas Salk” into two “acts.” The first is a vivid if by now familiar retelling of Salk’s early life, medical training, foray into polio research and fateful connection to Basil O’Connor, president of the National Foundation for Infantile Paralysis, known as the March of Dimes. Unlike other researchers, who were inching along in search of a live-virus vaccine, Salk had produced a killed-virus version with impressive results. It may not have been perfect, but it took a lot less time to develop. With polio raging each summer, a sense of urgency prevailed, giving Salk the upper hand. As O’Connor put it, “He sees beyond the microscope.”
In 1954, the March of Dimes sponsored the Salk vaccine polio trials. More than a million schoolchildren took part, some getting the real vaccine, others a look-alike placebo. Parents frantically pushed their children into line. They didn’t need to be educated about the risks and rewards of the vaccine. The evidence was everywhere: children in leg braces, wheelchairs, iron lungs — and coffins. The Salk trials rank among the great successes of modern medicine, and Jacobs tells the story as well as it’s ever been told. This is science writing at its best.
There are some curious gaps, however. Surprisingly, Jacobs doesn’t question Salk’s version of his early career as one in which anti-Semitism and political activism played no role. Though Salk angrily denied facing religious discrimination, the record shows otherwise. Among the reasons he attended New York University’s medical school in the 1930s is that it was one of the few places that didn’t have a “Jewish quota,” unlike Harvard, Yale, Columbia or Cornell. (“Never admit more than five Jews, take only two Italian Catholics and take no blacks at all,” was Yale’s mantra at the time.) A few years later, when applying for the fellowship that would start him on the road to the polio vaccine, Salk needed the blessing of his N.Y.U. mentor, Thomas Francis, a giant in the field of infectious disease. Realizing that the process had as much to do with religion as with talent, Francis ended his recommendation with these carefully chosen words: “Dr. Salk is a member of the Jewish race but has, I believe, a very great capacity to get on with people.”
In Salk’s early years, moreover, politics filled a deep personal void. Until serious trouble arose, Salk had defined himself through a wide range of political activities that colleagues described as “far left of center” — hardly unusual for someone coming of age in New York City during the Great Depression. The end result was an F.B.I. probe that came close to derailing his scientific career. With the Cold War in full swing, Salk put his politics aside, though the problem didn’t entirely go away. Following his triumphant White House visit in 1955, a four-page letter arrived from J. Edgar Hoover informing the president’s staff of the contents of Salk’s voluminous F.B.I. file. Fortunately, Salk’s new role as medical savior dwarfed Hoover’s paranoid concerns. The White House didn’t blink.
Amid the public accolades and professional slights, Jacobs writes, “one question always hovered: What great feat would he accomplish next?” Act 2 of the biography is a poignant and elegantly crafted look at a hero in decline. Bored with laboratory work in Pittsburgh, his killed-virus vaccine now losing ground to his rival Albert Sabin’s popular live-­virus vaccine, Salk took a radically different path. Captivated by the physicist-novelist C. P. Snow’s warnings about the growing cultural divide between humanists and scientists, Salk dreamed of an institute to bridge the gap. Lavishly funded by Basil O’Connor, it took shape on a spectacular bluff overlooking the Pacific near San Diego, designed by the architect Louis Kahn to reflect Salk’s vision of “a work of art in which great minds could flourish.” The big question, of course, was: Who would come?
Salk needn’t have worried, Jacobs explains. The salaries were high, the responsibilities slim, the working conditions splendid. Before long, the Salk Institute for Biological Studies was attracting Nobel Prize winners from around the globe. Every American recruited there in the early years was a member of the National Academy of Sciences, with one exception: Salk himself. Some punishments are eternal.
In California, a new Salk emerged. He divorced his wife of almost 30 years and married Françoise Gilot, the talented French artist best known as the longtime mistress of Picasso. Salk now exercised, practiced yoga, wrote tepidly received books about science and spirituality, and took advantage of an obviously open marriage to have multiple affairs, documented by Jacobs in perhaps excessive detail.
Professionally, Salk continued to drift. His attempts at hard science, seeking insights into cancer and multiple sclerosis, excited the media (“Jonas Salk Stalks Another Killer”) but came up dry. He spent considerable time working on a killed-­virus vaccine for AIDS, which looked promising for a time but ended in disappointment. What had once come so easily to him had long since disappeared. “Jonas was a common man lost among the geniuses in his own institute,” one friend recalled. A colleague added, “They more or less laughed behind his back.”
While the institute thrived in terms of cutting-edge biological research, its role in furthering the humanities, always a running joke among the elite scientists gathered there, faded quickly fromview. “It’s only half my dream, the biology half,” Salk confessed privately. “The humanity half of my dream has not been fulfilled.” There was worse to come. In perhaps the unkindest cut, Salk was forced to relinquish his laboratory — a devastating symbolic gesture — and given the honorary title of founding director, with a handsome salary and no role beyond the fund-raising magic of his name. “Salk,” Jacobs writes, “had been marginalized in the institute he had created.”
There would be one final victory, though. Believing his killed-virus polio vaccine to be safer than the live-virus version that had replaced it, Salk worked tirelessly in these years to improve its potency. Although he wouldn’t live long enough to enjoy his victory, the United States went back to his vaccine in the late 1990s, and the final push to end polio worldwide will require both vaccines — Salk’s and Sabin’s — to finish the job.
On the cover of Time magazine’s 1999 tribute to the 100 “greatest minds” of the 20th century is a rendering of Einstein on a couch being psychoanalyzed by Freud. On the table beside them is a photo of Jonas Salk. Some may dispute the comparison, but the message is clear. Salk remains the people’s scientist, the man who connected the wonders of the laboratory to the suffering of humankind — the man who saw beyond the microscope.

JONAS SALK

A Life
By Charlotte DeCroes Jacobs
Illustrated. 559 pp. Oxford University Press. $34.95.

Jun 1, 2015

Ed Roberts' Wheelchair Records a Story of Obstacles Overcome

The champion of the disability rights movement refused to be

 hindered and challenged the world to create spaces for independent living 


Roberts' wheelchair sports a reclining seat, a headlight for nighttime driving and a space in the back for a respirator and a small portable ramp. (National Museum of American History)



Ed Roberts
Ed Roberts was the first severely disabled student to attend the University of California at Berkeley
 and nurtured there a student-led disability services organization. (Corbis)


I am delivering to you,” said the handwritten note addressed to the Smithsonian Institution, “the motorized wheelchair of Ed Roberts.” After several dozen more ink-hewn words—words like “pioneer” and “amazing life”—the note concluded, asserting that the wheelchair told “an important story.” 
And so, in May of 1995, Mike Boyd, his note in hand, pushed his longtime friend's wheelchair to the Smithsonian’s Castle, the museum’s administration building, where he intended to leave it. “You can’t do that,” Boyd heard, repeatedly, from several women—docents, perhaps—flustered by the spontaneity and lack of process. “You can’t just leave it here!” A security guard was summoned, and Boyd recalls finally imploring him, “Look, Ed Roberts was the Martin Luther King Jr. of the disability rights movement.”
Indeed, Roberts, a disability rights activist who died 20 years ago this month, on March 14, 1995, at the age of 56, is hailed as the “father” of the independent living movement, a man who defied—and encouraged others to defy—the once-undisputed view that severely disabled people belonged in institutions and that the able-bodied best knew what the disabled needed.
A post-polio quadriplegic, paralyzed from the neck down and dependent on a respirator, Roberts was the first severely disabled student to attend the University of California at Berkeley, studying political science, earning a BA in 1964 and an MA in 1966, and nurturing there a nascent revolution. At UC Berkeley, Roberts and a cohort of friends pioneered a student-led disability services organization, the Physically Disabled Students Program, which was the first of its kind on a university campus and the model for Berkeley’s Center for Independent Living (CIL), where Roberts served as executive director from 1972 to 1975. Over time, from that first CIL, sprang hundreds of independent living centers across the country.
Roberts himself was a model—a joyful, positive model—of independence: He married, fathered a son, and divorced; he once swam with dolphins, rafted down the Stanislaus River in California, and studied karate.
Boyd, a special assistant to Roberts, had ferried the wheelchair from Roberts’s home in Berkeley to Washington, D.C. In the late afternoon of May 15, Boyd and several hundred other supporters had marched from the Capitol to the Dirksen Senate Office Building, pulling by a rope the empty wheelchair. A memorial service inside the Dirksen Building followed. And then, after the crowd had dissipated, Boyd and wheelchair remained—a horse, he says of the chair, without its general. He had promised Roberts that after his friend’s death, the wheelchair’s last stop would be the Smithsonian.
And it was.
Now held by the National Museum of American History, Roberts’s wheelchair embodies a story of obstacles overcome, coalitions formed and the able-bodied educated. It records a story that began in February of 1953, when the ailing 14-year-old boy, prone in a San Mateo County Hospital bed, overheard a doctor tell Roberts’s mother, "You should hope he dies, because if he lives, he'll be no more than a vegetable for the rest of his life.” Roberts, whose sardonic humor was part of his charm, was later known to joke that if he was a vegetable, he was an artichoke—prickly on the outside and tenderhearted on the inside.
The story continues when, several years later, his Burlingame, California, high school refused him a diploma because he had failed to meet the state-required physical education and driver training courses. Roberts and his family appealed to the school board and prevailed—and Roberts learned a thing or two about resisting the status quo.
The story continues when a University of California, Berkeley, official, hesitant to admit Roberts, said, “We’ve tried cripples before and it didn’t work.” In 1962, Roberts gained undergraduate admission to UC Berkeley—but not a room in a dormitory. The dormitory floors unable to bear the weight of the 800-pound iron lung he slept in, Roberts took up residence in an empty wing of the campus hospital.
During much of his time at Berkeley, Roberts relied on a manual wheelchair, which required an attendant to push him. Though he appreciated the company, he observed that the presence of an attendant rendered him invisible. “When people would walk up to me, they would talk to my attendant,” Roberts recalled, during a 1994 interview. “I was almost a nonentity.”
Roberts had been told that he would never be able to drive a power wheelchair. Although he had mobility in two fingers on his left hand, he could not operate the controller, which needed to be pushed forward. When Roberts fell in love and found the constant company of an attendant incompatible with intimacy, he revisited the idea of a power wheelchair and discovered a simple solution: If the control mechanism were rotated, the controller would need to be pulled backward. That he could do. On his first try, he crashed his wheelchair into a wall. “But that was a thrill,” he recalled. “I realized that, boy, I can do this.”
“That’s what the movement was about: disabled people coming up with their own solutions, saying we can build a better set of social supports, we can build a better wheelchair,” says Joseph Shapiro, journalist and author of No Pity: People with Disabilities Forging a New Civil Rights Movement“Disability is not a medical problem. The problem is the built environment and the barriers that society puts up. It’s not about the inability to move or to breathe without a ventilator; it’s about the inability to get into a classroom.”
There is an expression—“wheelchair bound”—that contradicts the reality of those who use wheelchairs, not the least of them Roberts. “It isn’t a device that binds us or limits us: it is an ally, an accommodation,” says Simi Linton, a consultant on disability and the arts, the author of My Body Politic, and herself a wheelchair user. “It shows a disabled person’s authority over the terms of mobility. It expands our horizons. And Ed was very much out in the world—around the globe.”
Just prior to his death, Roberts traveled the country—and the world—in a custom-built wheelchair that not only met his particular physical needs but also encouraged self-expression. “When he came into the room he captured people’s attention,” Joan Leon, a co-founder, with Roberts, of the World Institute on Disability, a think tank in Oakland, California, recalled in a eulogy for her colleague. "He kept that attention by moving his chair slightly—rolling it back and forth, lifting and lowering the foot pedals, and raising and releasing the back, even honking the horn or turning on the light.”
The wheelchair sports a Porsche-worthy, power-operated Recaro seat, which reclined when he needed to lie prone; a headlight, for nighttime driving; and a space in the back for a respirator, a battery and a small portable ramp. Affixed to one side of the wheelchair, a bumper sticker declares, in a purple type that grows bigger, letter by letter, “YES.”
Ed Roberts Campus
“Some objects don’t immediately reference a person.
 With a plate or a tea cup, you don’t have to think about 
who used it or how that person used it,” Katherine Ott, curator
 of the museum’s Division of Medicine and Science, says.
 But Roberts’s wheelchair, she observes, bears the intimate 
traces, the wear and tear, of its owner—
including the lingering imprint, on the seat cushion, of his body.
 “Who used it—and how it was used—is always hanging in the air.”
In 1998, Linton visited the Smithsonian, to work with Ott on an upcoming conference about disability. Knowing that Roberts’s wheelchair had come to the museum, she asked to see it. Ott led her to a museum storage room, and when she saw the chair, Linton began to weep: “I remember just welling up—at how beautiful the chair was and that it was empty: There was no one driving it. It was stock still, and Ed was not a still kind of guy. He was a mover and a shaker.”
Read more: http://www.smithsonianmag.com/smithsonian-institution/ed-roberts-wheelchair-records-story-obstacles-overcome-1

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