By Clay Risen, published 11/20/2024, updated 11/22/24
Diane Coleman, a fierce advocate for disability rights who took on Dr. Jack Kevorkian, the right-to-die movement and the U.S. health care system, which she charged was responsible for devaluing the lives of Americans like her with physical and mental impairments, died on Nov. 1 at her home in Rochester, N.Y. She was 71. [Diane pictured right with sign stating "freedom rider"]
Her sister Catherine Morrison said the cause was sepsis.
Ms. Coleman was born with spinal muscular atrophy, a disorder that affected her motor neurons. She was using a wheelchair by 11, and doctors expected her to die before adulthood.
Instead, she blossomed, graduating as valedictorian from her high school and receiving a joint J.D.-M.B.A. from the University of California, Los Angeles, in 1981.
It was only after several years of working as a consumer protection lawyer that she shifted her energies to disability rights, joining a flourishing movement that was pushing for anti-discrimination laws at every level of government, including improvements on transit and in buildings.
Ms. Coleman was a member of Adapt, considered one of the most militant disability rights groups. She participated in scores of protests, blocking the entrances to buildings where conferences were held or government offices were housed. She was arrested more than 25 times.
In the 1990s, she shifted her attention yet again, to assisted suicide and the right-to-die movement. Though the movement was aimed at people with terminal illnesses, she worried that legislation in many states would expand the law to include people with significant disabilities....
Gifted with a dark sense of humor, in 1996 she founded a group called Not Dead Yet, a reference to a memorable scene in the movie “Monty Python and the Holy Grail” in which a man tries to pass off an infirm — but very much alive — relative to a man collecting dead bodies.
“To put it bluntly, she was blunt,” Jim Weisman, a disability rights lawyer, said in an interview.
Working on a shoestring budget, Ms. Coleman organized protests against right-to-die legislation, became a regular guest on television news programs and testified four times before Congress.
“It’s the ultimate form of discrimination to offer people with disabilities help to die, without having offered real options to live.”
At the core of her critique was the argument that the idea of a “right to die” was evidence of how little society valued people like her and a warning that the health care system was broken.
“It is already possible in some states for impoverished disabled, elderly and chronically ill people to get assistance to die,” she told the House Judiciary Committee in 1996, “but impossible for them to get shoes, eyeglasses and tooth repair.”
Not Dead Yet showed up at Princeton University in 1999 after the university announced the hiring of Peter Singer, an Australian philosopher who had argued for voluntary euthanasia for people with disabilities.
Never shy with a quote, Ms. Coleman told the British newspaper The Independent that Mr. Singer was “a public advocate of genocide, and the most dangerous man on earth.”
Her biggest target was Dr. Kevorkian, who became a household name in the 1990s and early 2000s for assisting patients in ending their lives. She sent protesters to his house outside Detroit, and she reveled in his 1999 conviction for second-degree murder after he helped a man with amyotrophic lateral sclerosis end his life.
“It’s the ultimate form of discrimination to offer people with disabilities help to die,” she told The New York Times in 2011, “without having offered real options to live.”
Diane Marie Coleman was born on Aug. 11, 1953, in Tawas City, Mich. Her biological parents placed her for adoption when she was 10 days old. Her adoptive parents were a Kalamazoo couple: William Coleman, who owned an appliance store, and Dolores (Ferguson) Coleman, who oversaw the home.
When she was 6, Diane was diagnosed with muscular dystrophy, which doctors later said was actually spinal muscular atrophy and would require surgery. The adoption agency told the Colemans that they could send her back. They declined.
Instead, they encouraged her to work hard in school and to attend college, at a time when many people with disabilities did not. She graduated with a degree in psychology from the University of Illinois in 1976, and she received law and business degrees from U.C.L.A. five years later.
She spent eight years working for the California Department of Corporations, where she focused on consumer fraud. She attended her first protest in 1985, against the lack of wheelchair lifts on Los Angeles buses, and she joined Adapt a year later.
In 1989, she moved to Nashville, where she developed plans for an independent living facility for people with disabilities. She continued that work after moving to Chicago in 1996, the same year she founded Not Dead Yet.
Ms. Coleman’s first marriage, to Michael Yester, ended in divorce. She later married Stephen Drake. Along with her sister Catherine, he survives her, as does another sister, Denise Coleman.
Ms. Coleman and Mr. Drake moved to Rochester in 2008, to be close to his family. By then the muscles controlling her breathing had begun to weaken, and she was using a ventilator.
Still, she remained the chief executive of Not Dead Yet until her death, insisting that her fight was not just for people with disabilities but for everyone.
“The disability community is the canary in the coal mine,” she told The Village Voice in 1996. “This assisted suicide-euthanasia issue is a test for our nation. If we as disabled, chronically ill or terminally ill people are declared better off dead, who will be next?”