Civil rights advocate, educator, bioethicist, and author Brooke Ellison — who died on Feb. 4 at the age of 45 — is being remembered for the enormous impact she had on the disability community.

In a Feb. 5 press release, United Spinal Association remembered Ellison for her “wisdom, warmth, and formidable intellect,” and noted that her passing “will be felt across the community of wheelchair users and people living with spinal cord injuries and disorders, whom she tirelessly served as a true scholar-athlete.”

Ellison was serving as United Spinal’s VP of Technology and Innovation at the time of her passing. She joined United Spinal’s board of directors in August 2022.

A life of learning and service

United Spinal noted Ellison’s immense academic accomplishments, including a bachelor’s degree in cognitive neuroscience and a master’s degree in public policy, both from Harvard University. In a September 2023 article, the Harvard Crimson, the university’s newspaper, noted that Ellison was the first student with quadriplegia to attend Harvard.

Ellison followed up those degrees by earning a doctorate in sociology from Stony Brook University.

In an executive memo following Ellison’s passing, the Christopher & Dana Reeve Foundation said Ellison was struck by a car and sustained a high-level spinal cord injury as an 11-year-old. She was paralyzed from the neck down and used a ventilator.

“Through her remarkable life’s work, she helped bring spinal cord injury and disability to the front of the world’s consciousness and raise awareness of and funding for innovative stem cell research,” the Reeve Foundation said of Ellison. After the accident, “She determined early on that she would not be defined by her injury.”

Christopher Reeve, who sustained a high-level spinal cord injury in 1995, directed a film about Ellison, called The Brooke Ellison Story, that the Foundation said aired in 2004.

Not defined by disability

Ellison was also the author of two books: Miracles Happen, published in 2002, and Look Both Ways, published in 2020. Both were memoirs: The first, cowritten with her mother, Jean, covered Ellison’s younger years. The second book “shared with the world her adult perspective on the accident and all that followed as she pursued her dreams,” the Reeve Foundation said.

Ellison was also remembered by Stony Brook University, where she was an Associate Professor in the School of Health Professions.

“Dr. Ellison was greatly admired on campus, with her colleagues describing her as bold, brave, and action-oriented,” said Stony Brook President Maurie McInnis. “I was always impressed by Dr. Ellison’s deep commitment to making a difference for our campus community. She helped alert me and others to our blind spots and offered many ideas for making this campus more inclusive and welcoming. And she was always eager to take on new challenges.”

Vincenzo Piscopo, United Spinal’s President/CEO, said, “Brooke had an undoubtedly brilliant mind, and she was also kind — always. Her leadership was compassionate but, at the same time, fearless and visionary. She was always thinking beyond the obvious. She left a true legacy for our community, and she will be remembered by all of us.”

On her Web site, Ellison said, “My life has been shaped by challenges and adversity of all different kinds, but it has not been characterized by them. I am not defined by them. For every obstacle, I have sought opportunity. In each instance of sorrow, I have sought strength. When there has been challenge and adversity, I have looked for resilience and hope. That is what I want people to know about me, as that is how I see myself.”

Image: BrookeEllison.com