Brooke Ellison, prominent disability rights advocate, has died at the age of 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 advocate for disability rights, died Sunday in Stony Brook, NY. She was 45.

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

As an eleven-year-old, Brooke took karate, soccer, cello and dance lessons and sang in a church choir. But on September 4, 1990, she was hit by a car while crossing the road near her Long Island home in Rockville Centre, in Suffolk County. Her skull, spine and almost every major bone in her body were broken.

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-operated keyboard, a ventilator that delivered thirteen breaths per minute, and eventually a voice-activated computer for writing.

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

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 her mother's constant care, she entered eighth grade and relentlessly questioned her prognosis—a lifespan 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 expenses; graduated summa cum laude with a Bachelor of Science degree in cognitive neuroscience in 2000 and gave a speech; received a master's degree in public policy from Harvard's Kennedy School of Government; received a PhD in political psychology from Stony Brook University in 2012; and joined the 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 things will never turn out the way we expect,” Mrs. Ellison once said. “But instead of letting 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 hoped to emulate the career of astronomer Carl Sagan. But her mother said, “We never expected that her life would go the way it did: that she would have the opportunity to go to Harvard, that she would have a full-time job and be able to contribute to the world. '

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

Her expected lifespan “would have been approximately 8.6 years,” said Dr. Klitzman. “But with the help of her family, she defied these expectations.”

Brooke Mackenzie Ellison was born on October 20, 1978 in Rockville Centre, NY, to Edward and Jean (Derenze) Ellison. Her father was a manager of 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 been constantly by her side as her surrogate right-hand woman, raising her own hand in the classroom when her daughter had something to contribute.

“I am the brains,” Ms. Ellison told The New York Times in 2000. “She is the brains.”

Mrs. Ellison stayed with her daughter at Harvard, where the college equipped a dormitory with a hospital bed, a hydraulic elevator 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 Senate from Long Island as a Democrat, but was defeated by Republican incumbent John J. Flanagan.

In 2009, she collaborated with director James Siegel to produce “Hope Deferred,” a documentary intended to educate the public about research into embryonic stem cells, which can produce specialized cells guided in experiments to generate healthy cells to replacement of embryonic stem cells. damaged by 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 embraced by society, and the path to understanding was only just being forged,” she told The Times in 2005, reflecting on the accident that changed her . to live.

“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,” she continued, “my accident has not robbed me of my ability to think, reason or remain an essential part of society. My body didn't respond, but my mind and heart were exactly the same as always.”