Brooke Ellison, Prominent Disability Rights Advocate, Is Dead at 45

Brooke Ellison, Prominent Disability Rights Advocate, Is Dead at 45

Brooke Ellison, who after being paralyzed from the neck down by a childhood car accident went on to graduate from Harvard and became a professor and a devoted disability rights advocate, died on Sunday in Stony Brook, N.Y., on Long Island. She was 45.

Her death, in a hospital, was caused by complications of quadriplegia, her mother, Jean Ellison, said.

As an 11-year-old, Brooke had been taking karate, soccer, cello and dance lessons and singing in a church choir. But on Sept. 4, 1990, she was struck by a car while running across a road near her home in Stony Brook. Her skull, her spine and almost every major bone in her body were fractured.

After waking from a 36-hour coma, she spent six weeks in the hospital and eight months in a rehabilitation center. And for the rest of her life she was dependent on a wheelchair operated by a tongue-touch keypad, a respirator that delivered 13 breaths a minute and ultimately a voice-activated computer for writing.

“If she even survived,” her mother said in a phone interview, “at first we thought she would have no cognition at all.”

But Brooke recovered better than expected. Her first words after waking in the hospital were “When can I get back to school?” and “Will I be left back?”

The following September, thanks to the constant care of her mother, she enrolled in the eighth grade and relentlessly challenged her prognosis — a life span of perhaps another nine years — until her death.

A gifted student, she was accepted by and given a full scholarship to Harvard, which subsidized her medical costs; graduated summa cum laude with a Bachelor of Science degree in cognitive neuroscience in 2000 and delivered a commencement address; earned a master’s degree in public policy from Harvard’s Kennedy School of Government; was awarded a doctorate in political psychology from Stony Brook University in 2012; and joined its faculty that year.

She also became a national spokeswoman for people with disabilities and for stem cell research.

“One of the few guarantees in life is that it will never turn out the way we expect,” Ms. Ellison once said. “But, rather than let the events in our lives define who we are, we can make the decision to define the possibilities in our lives.”

Ms. Ellison did not fulfill her childhood dream: She had been hoping to emulate the astronomer Carl Sagan’s career. But, her mother said, “We never expected her life to go in the direction it did, to have the opportunity to go Harvard, for her to hold a full-time job and be able to contribute to the world.”

Dr. Robert Klitzman, a professor of psychiatry at Columbia University’s Mailman School of Public Health and a colleague of Ms. Ellison’s on the Empire State Stem Cell Board, an advisory group, said of her, “She would roll up in her automated electric wheelchair to the conference table and remind us that human lives, not just cells in petri dishes, were at stake.”

Her expected life span “would have been about 8.6 years,” Dr. Klitzman said. “But, with help from her family, she defied these expectations.”

Brooke Mackenzie Ellison was born on Oct. 20, 1978, in Rockville Centre, N.Y., to Edward and Jean (Derenze) Ellison. Her father was a manager for the Social Security Administration. Her mother’s first and last day of work as a special-education teacher was the day of Brooke’s accident.

She graduated with honors from Ward Melville High School in East Setauket, N.Y. in 1996. Her mother had perpetually been at her side as her surrogate right hand, raising her own in class when her daughter had something to contribute.

“I’m the brawn,” Mrs. Ellison told The New York Times in 2000. “She’s the brains.’”

Mrs. Ellison roomed with her daughter at Harvard, where the college outfitted a dormitory suite with a hospital bed, a hydraulic lift and other equipment. Mr. Ellison cared for Brooke’s older sister, Kysten, and younger brother, Reed, back home and visited his wife and Brooke on weekends.

Her honors thesis was titled “The Element of Hope in Resilient Adolescents.”

In 2006, Ms. Ellison ran for the New York State Senate from Long Island as a Democrat but was defeated by the Republican incumbent, John J. Flanagan.

In 2009, she teamed up with the director James Siegel to produce “Hope Deferred,” a documentary film intended to educate the public about research into embryonic stem cells, which can produce specialized cells that in experiments have been guided to generate healthy cells to replace those damaged by disease.

At Stony Brook, Ms. Ellison taught medical and science ethics and health policy.

“In 1990 we were living in a time when people in situations like my own were not necessarily embraced by society, and the path towards understanding was only beginning to be forged,” she told The Times in 2005, reflecting on the accident that changed her life.

“I didn’t want people to focus on what I had lost in my life, but rather on what I still had in my life.”

“Thankfully,” she continued, “my accident did not rob me of my ability to think, reason or remain a vital part of society. My body would not respond, but my mind and my heart were just the same as they had always been.”

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