Fred Pelka has been visiting my bookstore for years - first the ridiculously vertical space at 93 Main St. and later the relocated shop on Maple Street, which has a tricky entrance step and two levels inside.
I always felt slightly uncomfortable, especially when Pelka was on a quest for books for his partner, Denise Karuth, whose wheelchair was unable to effortlessly enter the stores, let alone navigate the various stairways and quirky spaces inside.
So I was even more uncomfortable when we sat down to chat not long ago about Pelkas recent receipt of a Guggenheim Foundation grant that allows him to continue his groundbreaking work in chronicling aspects of the disability rights movement in this country.
My discomfort did not issue solely from guilt about the inaccessible layout of the bookstore, but like many people in this community I had no knowledge that Fred Pelka has been toiling unheralded for years trying against heavy odds to get us to pay attention to the need to expand basic human rights to the disabled.
The $35,000 Guggenheim grant and Pelkas various book projects now on the verge of coming to fruition suggest that his efforts have finally gained our attention, and that his voice will only grow stronger.
Pelka and Denise, who has Multiple Sclerosis, met as students in the early 1970s at SUNY- Buffalo, and have lived in Northampton for only for the last 10 years.
The roots of his slow but deepening interest in the disability movement goes back to their coming of age in Boston after graduating from college in 1976.
Like most college graduates at the time, Pelka, who was born in Patchogue, Long Island, in 1954, did not have a game plan when he and Denise arrived in Boston. He did a lot of secretarial work, much of it for arts organizations. But eventually he became involved with the Boston Center for Independent Living.
Its inspiration may have partially stemmed from the work of an organization created in the 1960s by disabled college students at the University of California at Berkeley.
Rather than be content with being confined to nursing homes and other institutional settings, a cadre of disabled students created a community center, hired personal care helpers, and eventually became activists for their cause, finally spawning a political movement.
The center in Boston was organized in 1974 and Pelka, looking for work, stumbled into it in 1977, getting a job as a personal care assistant, or PCA, working with several disabled clients. The PCA, he explained, is employed directly by the disabled person, who hires you, trains you, supervises you and, if need be, and fires you. That is in contrast to the traditional medical model of care provided by nurses, doctors and administrators, he explains.
Its hard to get involved with these folks and not get quite political, he says, as the disabled raised their voices against indignities and affronts they ran into because of the indifference of the MBTA, tax cab companies, landlords and businesses toward the disabled.
At the same time, Pelka became interested in journalism, taking courses at the Boston University School of Communications, but never graduating.
The more deeply he became involved in the problems of the disabled, the more he saw its potential. I was thinking this is a great story. This was a whole subculture, a whole world that nobody was paying attention to.
He began writing about issues relating to the disabled for the centers newsletter. Very soon, it became clear to him that the story of the disabled was at its core a matter of civil rights.
Pelkas writing on the subject initially gained attention with an article he published in the Humanist Magazine titled: Hating the Sick: Health Chauvanism and Its Cure, which was drawn from a talk he gave at Harvard which explored the link between religious and other prejudice against people with disabilities.
It is tied to the notion that people are disabled because God hates them, or the so-called just world theory that sees bad things happening mainly to bad people, he said.
Karuth had herself been active in the disability-rights field, serving as chair from 1984 to 1987 of the Governors Commission on Accessible Transportation and later executive director of the Boston Self Help Center, a counseling agency for people with disabilities and chronic illness.
After he and Denise moved to Northampton in 1994, Pelka was still working as a personal a care assistant, trying to make ends meet with free-lance writing and editing, in other words, patching things together.
Meanwhile, he continued to write for Mainstream: Magazine of the Able-Disabled, which was published in San Diego. By 1997, Pelka had finally finished work on a one volume history on the disability rights movement as part of a series of reference books published by ABC - CLIO. It was a fat volume, which took some three years to research and write.
By this time the field was expanding by leaps and bounds, it was reaching a critical mass, he recalls, with institutions such as San Francisco State creating special studies in the field.
Once his reference book came out, people at Berkeley involved in compiling oral accounts of the disability rights movement enlisted Pelka to conduct interviews on the East Coast with those whose experiences added depth to the history of the movement.
Prior to 1950 and for decades afterward, there was no federal requirement that schools educate children with disabilities, Pelka explained. We dont do cripples, was the reaction to parents of a child disabled with cerebral palsy, Pelka cited as an example. But as a result of growing activism, the ages-old system of segregating the disabled from the non-disabled began to break down.
Of course, the inevitable question of what constitutes a disability has been roundly debated. The deaf and the blind have different needs and agendas, says Pelka. There are also physical disabilities and psychological ones; obvious disability and hidden ones, such as stuttering only when it is necessary to speak.
Not surprisingly, like most of us, he has had to confront his own personal demons - both physical and psychological. Also on a personal level, he remembers when his oldest brother stepped on a land mine while serving in Vietnam and lost his right leg. It was a huge, huge experience for our family, he recalls.
Once you begin looking for disability, its everywhere, he says, yet it escapes our notice.
As the disability rights movement grew in strength, he said, the high-water mark was the passage of the Americans with Disabilities Act of 1990, which vastly expanded and purportedly guaranteed the rights of those with disabilities.
But since then, he says there has been terrific negative reaction ... and ground has been lost. There is a good deal of debate in the movement now about how you deal with this backlash, he said.
The Guggenheim Foundation grant will allow Pelka to concentrate in the next year on assembling into a single edited volume the 100-plus oral histories gathered at the Bancroft Library at Berkeley. The work will likely take longer than a year, but the money available from the grant will give Pelka welcome support for his work. Its nice, its very nice.
Pelkas partner, Denise, has been religious advisor to the Protestant community at Mount Holyoke College and currently policy analyst and consultant to the state-wide Independent Living Council.
Meanwhile, Pelka is anticipating the publication this summer of a book he has written to be published the University of Massachusetts Press based on 140 letters written home by Col. Charles F. Johnson, a Union solider who was seriously wounded during the Civil War.
Pelka came upon Xerox copies of the letters while doing research in Carlisle, Pa., about the formation of a military unit called the Invalid Corps, which consisted of a huge number of wounded and maimed Union soldiers who continued to play a key role during the Civil War as aides, clerks, and guards. The book is titled The Civil War Letters of Charles F. Johnson, Invalid Corps.
Of the letters, Pelka says: This is great stuff. Hes literate, hes funny, hes self deprecating. He writes to his wife practically everyday.
During and after the war, the country had to deal with thousands and thousands of seriously disabled young men, Pelka explains, which even today remains a very under-reported story.
Not a surprise, suggests Pelka, who often invokes a statement by Douglas C. Baynton, a contributor to a book of essays titled The New Disability History and edited by Paul K. Longmore and Lauri Umansky.
Pelka hands me a printed sheet with Bayntons observation prominently highlighted: Disability is everywhere in history, once you begin looking for it, but conspicuously absent in the histories we write.