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

Brooke Ellison, who after being paralyzed from the neck down in a childhood car accident graduated from Harvard and became a professor and dedicated disability rights advocate, died Sunday in Stony Brook, New York. She was 45 years old.

His death, in a hospital, was caused by complications from quadriplegia, said his mother, Jean Ellison.

When she was 11, Brooke had been taking karate, soccer, cello and dance classes and singing in a church choir. But on September 4, 1990, she was hit by a car while crossing a road near her Long Island home in Rockville Centre, Suffolk County. Her skull, her spine, and almost every major bone in her body were fractured.

After waking up from a 36-hour coma, he spent six weeks in the hospital and eight months in a rehabilitation center. And for the rest of her life she depended on a wheelchair operated by a touch pad, a respirator that delivered 13 breaths per minute and, ultimately, a voice-activated computer for typing.

“If he survived,” his mother said in a telephone interview, “at first we thought he would have no knowledge.”

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

The following September, thanks to his mother’s constant care, he enrolled in eighth grade and relentlessly defied his prognosis (a life expectancy of perhaps another nine years) until his death.

As a talented student, she was accepted and received a full scholarship to Harvard, which subsidized her medical costs; She graduated summa cum laude with a bachelor’s degree in cognitive neuroscience in 2000 and gave a commencement address; she earned a master’s degree in public policy from Harvard’s Kennedy School of Government; she earned a doctorate in political psychology from Stony Brook University in 2012; and she joined her faculty that year.

She also became a national spokesperson 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,” Ellison once said. “But, instead of letting the events of our lives define who we are, we can make the decision to define the possibilities of our lives.”

Ms. Ellison did not fulfill her childhood dream: she hoped to emulate the career of astronomer Carl Sagan. But her mother said, “We never expected her life to take the direction it did, to have the opportunity to go to Harvard, have 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 at the Empire State Stem Cell Boardan advisory group, said of her: “She would come to the conference table in her automated electric wheelchair and remind us that human lives were at stake, not just cells in Petri dishes.”

Their life expectancy “would have been about 8.6 years,” Dr. Klitzman said. “But, with the help of his family, he defied these expectations.”

Brooke Mackenzie Ellison was born on October 20, 1978 in Rockville Centre, New York, the daughter of Edward and Jean (Derenze) Ellison. Her father was a manager at 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 Stony Brook in 1996. Her mother had always been by her side as her surrogate right-hand woman, raising her in class when her daughter had something to contribute.

“I am the brawn,” Mrs. Ellison told the New York Times in 2000. “She is the brain.”

Mrs. Ellison roomed with her daughter at Harvard, where the university outfitted a dormitory with a hospital bed, a hydraulic lift and other equipment. Mr. Ellison cared for Brooke’s older sister, Kysten, and younger brother, Reed, at 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, he teamed with director James Siegel to produce “Hope Deferred,” a documentary aimed at educating the public about embryonic stem cell research, which can produce specialized cells that in experiments have been guided to generate healthy cells to replace those damaged by the disease.

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

“In 1990 we lived in a time when people in situations like mine were not necessarily accepted by society, and the path to understanding was just beginning to be forged,” he told The Times in 2005, reflecting on the accident that changed his life. life.

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

“Fortunately,” he continued, “my accident did not take away my ability to think, reason, or remain a vital part of society. My body did not respond, but my mind and my heart were the same as always.”

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