The Rev. Denise Karuth, who tirelessly advocated for the disabled, dies at 64
The Rev. Denise Karuth, who was legally blind and used a wheelchair, once wrote that living with disabilities “presents an opportunity to develop competencies in judgment, problem-solving, and compassion that few of life’s other experiences can equal.”
By that measure, life provided her with an education that surpassed the master’s degrees she earned while spending decades advocating for those with disabilities, playing a key role in making the MBTA more accessible, and becoming a United Church of Christ minister late in life.
When Rev. Karuth was ordained in November 2016, she was already outliving a dire prognosis, after being diagnosed the previous year with an inoperable brain tumor. She was 64, and had lived in Easthampton, when she died on Easter Sunday.
“She strove her entire life to create societal change and to care for those less fortunate,” her friend Barbara Oswald said in a eulogy at Rev. Karuth’s memorial service Saturday at First Churches of Northampton.
Years ago, they worked together at the Boston Self Help Center, a nonprofit counseling and advocacy organization run by and for those with disabilities and chronic illnesses.
Left legally blind by procedures doctors used to keep her alive after her premature birth, Rev. Karuth began using a wheelchair when she was diagnosed with multiple sclerosis in her 20s.
“But her intellectual and heartfelt vision, her wide-angle lens approach, provided a broad view of life, encompassing and compassionate, a view that acknowledged an unjust and hurting world,” added Oswald, who also is legally blind.
Rev. Karuth contributed recollections of her experiences to the book “Ordinary Moments: The Disabled Experience.”
“A disability becomes a handicap only when solutions can’t be found to the problems that disability presents,” she wrote. “In my mind, people who have managed to solve such problems often develop a clarity of vision and wisdom, if you will, that few can match.”
She spent her life coming up with solutions. As a disabled, would-be bus and subway rider, she gathered firsthand wisdom to pass along to Massachusetts Bay Transportation Authority officials, who more than 30 years ago thought it would be too difficult to make public transportation more accessible.
Rev. Karuth “had this amazing ability to empathize. She also had a way of forming coalitions,” said Fred Pelka of Easthampton, her longtime companion.
“She was really a world-class expert on public mass transportation,” he added. “People at the MBTA would say, ‘It’s impossible to make the Green Line accessible’ or ‘It’s prohibitively expensive to make what you want happen.’ And she’d say, ‘It’s happening in Portland, Oregon, and it’s happening in Sweden. And I know because I’ve been there.’ ”
In the mid-1990s, the Rev. Karuth moved to Florence, and she returned to Boston several years later to try for herself the adaptive equipment that made the Green Line more accessible to wheelchairs — two decades after she had begun advocating for such measures. Even then, boarding went slowly.
“When I finally got on, and saw that people were checking their watches and grumbling, I called out, ‘I’m sorry for the delay, but I’ve waited 22 years to take this train,’ ” she recalled in her contribution to Pelka’s 2012 book “What We Have Done: An Oral History of the Disability Rights Movement.”
While serving on committees that sought to make public transportation accessible, Rev. Karuth got people “to work together and compromise,” Oswald said. “This talent annoyed those strident in their efforts to see the fight for disability rights as an ‘us vs. them’ campaign. Denise could creatively work an enemy into an ally.”
Among the changes Rev. Karuth lobbied for were ways to let those with impaired sight know that they’re about to step onto a street, or that they’re too close to the edge of a subway platform.
“Go into Boston, enter any subway station, and you’ll see raised domes — tactile strips — along the edge of the platform,” Oswald said. “They’re there so that people who are blind or otherwise visually disabled can feel where the platform ends and therefore not fall into the pit. Denise had been involved in the struggle — but her commitment was intensified when a friend of hers fell off the edge of a Boston platform.”
Denise Anne Karuth was born in Buffalo on Nov. 21, 1954. In later years, she described how her vision was damaged from having been placed in a “pure oxygen incubator” because of her premature birth.
She spent most of her childhood and youth in Buffalo, a daughter of Betty Yoesel and Frederick Karuth.
In Pelka’s book, Rev. Karuth recalled a childhood of wearing “incredibly thick glasses,” enduring accidents such as falling down stairs, and being admonished by the school nurse after a dicey eye exam in fourth grade: “You’d better do better next year or we’ll send you away to the school for the blind.”
After graduating from high school, she attended the State University of New York at Buffalo, where she majored in music and graduated with a bachelor’s degree in 1976. She later received a master’s in rehabilitation counseling from Boston State College, and a master’s in divinity from Episcopal Divinity School in Cambridge.
She had met Pelka on the last day of freshman summer orientation at college in Buffalo.
“We met and we just talked all night,” he recalled. They wrote letters during the rest of the summer, were a couple from then on, and both became historians of the disability rights movement.
Rev. Karuth moved to Boston after college and combined volunteer efforts with working as a peer counselor at the Boston Self Help Center. She started using a wheelchair after her MS diagnosis in 1981.
As a member of First Church in Cambridge, Congregational, she chaired a committee that led to the creation of a shelter for homeless men.
Her work on behalf of the homeless and those with disabilities was often honored. Over the years, she helped found or served on the boards of numerous organizations, including the Massachusetts Coalition of Citizens with Disabilities and the access advisory board for the Museum of Fine Arts, Boston.
A service has been held for the Rev. Karuth, who in addition to her companion, Fred Pelka, leaves her mother, Betty of Rochester, N.Y.; her sister, Linda Startup of Scottsville, N.Y.; and her brother, Edward of Rochester.
While many encouraged her over the years, Rev. Karuth noted in her writings and in testimony before lawmakers that others suggested she simply give up.
Upon learning that Rev. Karuth was legally blind, one college professor told her she’d never get a job “in the real world.” She recalled that even some loved ones were “convinced that my disability was a fate worse than death,” and would bluntly ask: “Why don’t you just kill yourself and get it over with?” Such experiences led her to testify against medically assisted suicide legislation.
Her victories in securing accessibility for those with disabilities were sweet, however. She wrote that the time she finally rode a Green Line trolley more than 15 years ago “was one of the best days of my life.”
“I was Sisyphus, and I’d finally pushed the rock to the top of the hill,” she added. “I can’t begin to tell you how good that felt.”