In Memory of Brooke Ellison
Brooke Ellison, a champion of the rights of people with disabilities, passed away on February 4, 2024, at the age of 45. Her legacy of resilience and advocacy for people with disabilities resonates deeply with us at the Rick Hansen Foundation (RHF).
Brooke was extraordinary. Her long list of accomplishments included author, professor, and passionate advocate. It was clear from a young age that she was a gifted student. When she was 11, her life took a dramatic turn when she was struck by a car while walking home from school. We include this here because Brooke never shied away from telling her life story.
She spent six weeks in the hospital and eight months in rehabilitation. She couldn’t wait to get back into the classroom. Meanwhile, those around her held uncertain hopes about the impact of her injuries on her cognitive abilities.
That uncertainty quickly dissipated. Brooke returned to studies with the help of a wheelchair operated by a tongue-touch keypad and a respirator. Her mother was a constant at her side, even rooming with her daughter at Harvard University, where Brooke attended on a full scholarship after graduating high school with honours.
After graduating from Harvard magna cum lude with a Bachelor of Science degree in cognitive neuroscience in 2000, Brooke was awarded a doctorate in sociology from Stony Brook University, New York, in 2012. She then joined its faculty as an associate professor, teaching medical and science ethics and health policy.
She was also a national spokeswoman for people with disabilities and stem cell research. Her obituary on the Stony Brook University website included a poignant quote from Brooke: “One of the few guarantees in life is that it will never turn out the way we expect. But rather than let the events in our lives define who we are, we can make the decision to define the possibilities in our lives.”
Brooke also made her presence known north of the border.
At Stony Brook University, she created the Vertically Integrated Projects course (VIP), which brings students from various interdisciplinary fields together to work on solutions to advance accessibility and disability inclusion. RHF funded the VIP program for the 2023-24 academic year with Director of Technical and Program content for the RHF Accessibility Certification Program, Kevin Ng, working with Brooke to develop course objectives and deliverables.
The VIP program equips students with a fundamental understanding of accessibility. The course covered the history of accessibility in relation to human rights and understanding the impetus behind the Americans with Disabilities Act (ADA) and what this landmark civil rights legislation did for disability inclusion for people in the country.
It also showed students the persisting gaps that exist in the accessibility landscape. It introduced the concept of access being a matter of disability inclusion and opportunity rather than from a strictly compliance (and punitive) perspective. As part of teachings around Universal Design, students learned how to use RHFAC, a rating system that measures and certifies the level of meaningful access of sites.
Brooke and her students even enrolled in the online RHFAC Training course taught by Kristen Habermehl at Nova Scotia Community College last November. Brooke passed the course and had been working toward her RHFAC Professional designation with plans to teach the course in the States.
Brooke’s influence on her students at Stony Brook was so great that they pushed to keep the VIP program after it was discontinued following her passing. Inspired by her legacy, they mobilized faculty members to support the program’s existence. Kevin from RHFAC has met with the group to guide and support their efforts, personally visiting Stony Brook this spring to conduct RHFAC ratings, demonstrating the intricacies of accessibility assessment firsthand.
“Brooke was an outstanding leader and really brought people together with her infectious and positive energy,” said Kevin. “The VIP course is one of the many projects that demonstrated her dedication and commitment to advancing access and inclusion.”
Brooke’s spirit continues to live through her work and the lasting impression she left on those who knew her. Her influence ripples onward through the broader community, much like the butterfly effect, and her words endure in the form of her two books. The first “Miracles Happen: One Mother, One Daughter, One Journey” (2002) was adapted into a film in 2004 directed by Christopher Reeve. Brooke’s memoir, “Look Both Ways,” was published in 2021.
In her biography on her website, Brooke shared words to live by:
“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 challenges 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. That is also what I want people to know about themselves, as that is how I view the world.”
Brooke Mackenzie Ellison, October 20, 1978 – February 4, 2024
