Brooke Ellison, Prominent Disability Rights Advocate, Dies at 45

Brooke Ellison, Prominent Disability Rights Advocate, Dies at 45

Brooke Ellison, who after being paralyzed from the neck down following a car accident as a child, graduated from Harvard and became a professor and dedicated advocate for the rights of people with disabilities, died Sunday at Stony Brook , in New York State, on Long Island. She was 45 years old.

His death at the hospital was caused by complications of quadriplegia, said his mother, Jean Ellison.

By the age of 11, Brooke was taking karate, soccer, cello and dance lessons and singing in a church choir. But on September 4, 1990, she was hit by a car while crossing a road near her home in Stony Brook. His skull, spine, and almost every major bone in his body was fractured.

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

“If only she survived,” her mother said in a telephone interview, “at first we thought she wouldn’t have any knowledge.”

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

The following September, thanks to her mother’s constant care, she enrolled in eighth grade and relentlessly questioned her prognosis – a life expectancy of perhaps nine more years – until her death.

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

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

“One of the few guarantees in life is that everything will never turn out the way we hope,” Ms. Ellison once said. “But rather than 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 realize her childhood dream: she hoped to emulate the career of astronomer Carl Sagan. But her mother said, “We didn’t expect that her life would take the direction that it did, that she would have the opportunity to go to Harvard, that she would have a full-time job and that she can contribute to the world. »

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

Its expected lifespan “would have been about 8.6 years,” Dr. Klitzman said. “But, with the help of her family, she defied those expectations. »

Brooke Mackenzie Ellison was born October 20, 1978 in Rockville Centre, New York, to Edward and Jean (Derenze) Ellison. His father was a director of social security. 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, New York, in 1996. Her mother had always been by her side as a surrogate right-hand woman, raising hers in the classroom when her daughter had something to contribute.

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

Ms. Ellison lived with her daughter at Harvard, where the university equipped a dormitory with a hospital bed, a hydraulic elevator and other amenities. 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 as a Democrat for the New York State Senate from Long Island, but was defeated by the Republican incumbent, John J. Flanagan.

In 2009, she teamed up with director James Siegel to produce “Hope Deferred,” a documentary film intended to raise public awareness of research into embryonic stem cells, which are capable of producing specialized cells that, in experiments, have been guided to generate healthy cells to replace. those affected by the disease.

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

“In 1990, we were living in a time where people in situations like mine were not necessarily accepted by society, and the path to understanding was only beginning to take shape,” she told the Times in 2005, reflecting on the accident that transformed her. life.

“I didn’t want people to focus on what I had lost in my life, but rather on what I had left 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 wasn’t responding, but my mind and heart were exactly the same as they always had been.

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Eric D. Eilerman

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