Disability Rights Activist Brooke Ellison Remembered as a Friend and Leader

During a Harvard webinar in 2022, Brooke M. Ellison ’00 spoke about the need to change the narrative on disabilities.

Disabilities should not be a source of “shame or inadequacy,” Ellison said.

“Though many people with a disability might prefer to live without it, it is the social narrative regarding disability that needs to change,” she continued. “This part is entirely socially constructed, and it needs to be deconstructed and then reconstructed.”

Ellison, a disability rights activist and one of the first quadriplegic students at Harvard, died on Feb. 4 at the Stony Brook University Hospital in New York. She was 45.

Ellison’s family announced her death and honored her “extraordinary life” in a Feb. 4 Facebook post.

‘A Gift of Connecting’

Born in Long Island in 1978, Ellison led a vibrant academic career while participating actively in disability advocacy.

At 11, Ellison was struck by a car near her home. Following the accident, Ellison was in a 36-hour coma before spending six weeks in the hospital and eight more months in a rehabilitation center.

The accident, which fractured her skull and spine, left Ellison paralyzed from the neck down.

Six years later, Ellison arrived on Harvard’s campus as a newly minted freshman at the College.

Ellison studied cognitive neuroscience at the College before obtaining a master’s in public policy from the Harvard Kennedy School.

Throughout her time at the College and Kennedy School, Ellison’s mother helped her attend classes and became an inseparable part of her education.

After graduating from HKS in 2004, Ellison went on to run for New York State Senate as a Democrat in 2006. Six years later, Ellison obtained her Ph.D. in sociology from Stony Brook University and joined its faculty that same year, eventually becoming an associate professor.

Colleagues and teachers praised Ellison for her academic achievements.

Mathias Risse, the Faculty Director of the HKS Carr Center, wrote in an emailed statement that Ellison was “one of the most talented students” in an MPP ethics class he had taught at HKS.

Ellison was chosen as an incoming HKS Carr Center for Human Rights Fellow for the 2024-25 academic year.

Madeline J. Williams, a historian of disability at the University of Chicago who taught disability history at Harvard, praised Ellison in an emailed statement as “an accomplished scholar and researcher.”

In particular, Williams pointed to Ellison’s 2019 article “The Patient as Professor: How My Life as a Person with Quadriplegia Shaped My Thinking as an Ethicist” and 2023 article “Not my ventilator: How conceptual frameworks of disability and the absence of the disabled voice have shaped healthcare policies in the COVID-19 pandemic and beyond.”

Stephen G. Post, Director of the Stony Brook Center for Medical Humanities where Ellison taught, praised her for “beautifully” navigating her role as a professor.

“She’s clearly the best speaker that I’ve heard in a medical school,” Post said. “She really had a gift of connecting deeply with her audience.”

‘Source of Strength’

Ellison arrived on Harvard’s campus “at a moment in history when public language and action around disability was changing with the recent passage of the Americans with Disabilities Act,” according to Williams.

And though “Harvard was not designed with disabled people in mind,” Williams wrote, Ellison was one of the people who “made it work for them.”

During a Commencement speech in 2000, Ellison spoke about her unique experiences at Harvard and how her mother played a significant role in shaping her college journey.

Kate Upatham, the senior director of Harvard’s University Disability Resources, recalled a passionate speech Ellison gave at a 2002 event hosted by the Harvard Whole Me Campaign — a University initiative aiming to “destigmatize disabilities and encourage individuals with disabilities to live authentically in their professional lives,” according to its website.

“She spoke powerfully and movingly about the many ways that disability is not only a source of learning but also a source of strength,” Upatham wrote in an emailed statement.

“She modeled Harvard’s value of inclusive excellence, passionately highlighting the many ways that disability enhances and enriches our community when we are inclusive and welcoming of those strengths,” she added.

Three years after graduating from the College, Ellison continued to stay involved in disability advocacy and rights at Harvard.

According to Upatham and Grace Moskola, Harvard’s Associate Dean for Disability Access, Ellison played a key role in founding and leading the Harvard Alumni Disability Alliance in May 2023, an alumni group “dedicated to the inclusion of people with disabilities in all aspects of life,” according to its website.

Ellison’s disability rights advocacy at the University is still celebrated by Harvard students.

Eunice S. Chon ’26, the co-advocacy chair of the Harvard Undergraduate Disability Justice Club, said that disability student activists are “continuing her legacy for more of our representation and inclusion on Harvard’s campus.”

Chon pointed to the importance of having a space at Harvard where disabled students can share their experiences through disability activism.

“It was one of the most transformative experiences I’ve had at Harvard to be in that community and learn from activists before me,” she said.

‘Quite Remarkable’

According to Moskola, disability activism was an integral part of Ellison’s life.

“Through working with Brooke, I came to understand that her advocacy work for advancing disability rights was inseparable from who she was as a person,” Moskola wrote. “Her passion was fueled by the wisdom that personal connection and our interdependence with one another is what makes a community powerful.”

According to Post, Ellison “could speak extemporaneously really from her own journey in life, about what it is and where it comes from.”

Two decades after her accident, Ellison published a memoir with her mother detailing their journey since her accident. The book was later adapted into a film in 2004.

Friends and colleagues praised Ellison for being a selfless leader who impacted everyone she worked with.

Post said that “she was incredibly loved, and everybody who heard her was grateful.”

“She had a way of making friends and also keeping friends,” he said. “She really valued relationships tremendously.”

He added that Ellison’s memorial service was widely attended by not just “people from Harvard from her class,” but “people from all over the world.”

“It was quite remarkable,” Post said.

Robert Manson, who was a classmate of Ellison’s at the Kennedy School and helped found HADA alongside Ellison, wrote in an emailed statement that “Harvard has lost a leader and a friend.”

“We are absolutely committed to continuing the work she started by founding HADA, something she regarded as a lifetime achievement of which she was immensely proud,” he wrote. “Anyone that came into Brooke’s orbit was deeply impacted by her positivity, her humanity and her selflessness.”

“As a group we loved her and we feel her loss acutely,” Manson wrote. “We will all miss her every single day.”

—Staff writer Hana Rostami can be reached at hana.rostami@thecrimson.com.

—Staff writer Cam N. Srivastava can be reached at cam.srivastava@thecrimson.com. Follow him on X @camsrivastava.