I was watching TV one Sunday morning and came across the story of Brooke Ellison. A quadriplegic woman since the age of 11 following a tragic accident, she was essentially given no hope for leading anything resembling a normal life. But she was not an ordinary person. Brooke’s story is one of remarkable resilience and determination, about overcoming personal odds, and later devoting her life to giving a voice to others with disabilities.
I was saddened to learn that Brooke had passed away at the young age of 45. Having never met her, I find her a kindred spirit. As someone who has lived with rheumatoid arthritis (RA) since high school, I dealt with naysayers and had to make career decisions, just as Brooke did. We were also faced with a key challenge: We can give in to our disabilities, OR we can live our lives despite our disabilities. Thankfully, we chose the latter.
I’m certainly no pioneer like Brooke. Her life, her inspiration, and her drive truly defined what it means to defy the odds and live a purposeful life despite a physically limiting disability. She didn’t want to be the girl in the wheelchair. She wanted to be the girl that made an impact on people’s lives. And she did that by dedicating her whole life to helping change the narrative around people with disabilities.
Her life has been well chronicled—in her book Miracles Happen: One Mother, One Daughter, One Journey, and a feature television film based on the book—The Brooke Ellison Story, directed by actor Christopher Reeve, himself becoming a quadriplegic and disability advocate.
A life of endless possibilities
Let me share a little bit about Brooke. At the age of 11, this intelligent, full-of-life young lady was tragically struck by a car while walking home from school. Her prognosis was grim. Thirty-six hours in a coma, six weeks in the hospital, and eight more months in a rehabilitation center. She was paralyzed from the neck down with no hope of regaining any movement below her neck.
While doctors and medical experts prepared the family for a not-so-bright future for Brooke, neither she nor her parents accepted that. In fact, Brooke’s first words after the accident weren’t “why me?” They were “when can I go back to school?” A comment full of hope and optimism.
According to Dr. Robert Klitzman, a professor of psychiatry at Columbia University and a colleague of Brooke’s later in her life, Brooke clearly defied the life expectancy odds of someone in her condition, which normally is about 8.6 years. Living until the age of 45, I have to believe her positive outlook and resilience had something to do with her outwitting the odds.
During the years following the accident, Brooke excelled in the classroom. A key to her success was her mother, who went to every class and helped with every assignment. Six years after the accident, Brooke was headed to Harvard, again, with her mother by her side. She graduated Summa Cum Laude with a degree in cognitive neuroscience, later earning a master’s degree in public policy from Harvard’s Kennedy School of Government, and a doctorate in sociology from Stoney Brook University. Her mother was there every step of the way, caring for her, attending every class, and advocating for her.
Ironically, the day of Brooke’s accident in 1990 was her mother’s first and last day as a teacher. While her in-classroom teaching career ended the same day it began, it was also the day she became her daughter’s greatest ally and support through her life journey, a fact that Brooke so eloquently shared throughout her life.
As Brooke completed her education, her life for the next 20 years was devoted to public speaking, teaching, and advocating about and for people with disabilities and the research and advances being made through stem cell research.
A choice to not give up
Imagine what would have happened on that fall day in 1990 if Brooke had given up. But she didn’t. Her story is one of amazing resilience, fortitude, and drive. She didn’t give in. She turned her physical limitations into a well-lived life with purpose, meaning and gratitude.
When I was diagnosed with rheumatoid arthritis in 1977, my doctor basically said, “well, you need to move to Florida.” In other words, he was telling me good luck, forget about college, go somewhere warm, and deal with the pain. If you are not familiar with it, rheumatoid arthritis, is an autoimmune disorder that occurs when your immune system mistakenly attacks your own body’s tissues and joints. It can be painful and debilitating. There weren’t a lot of treatment options in the 70’s.
I wasn’t going to give up that easily. Like Brooke, I didn’t want this disease to define me. I wanted something else to define me. My physical limitations, while not even remotely near the scale of Brooke’s, led me, like her, into a career of wanting to help people—first as a vocational rehabilitation counselor and then managing partial hospitalization and community employment programs to prepare and support individuals with disabilities to become employed.
I then invested once again in myself to become an attorney, focusing on the legal needs of people with disabilities. I still live with RA, and I continue to advocate for those who can’t, because each of us deserves the opportunity to live a meaningful life.
Turning disability into a purpose
I can’t stop thinking about Brooke’s impact on the disability community, as well as those whose lives she touched. Her accident occurred just a mere month-and-a-half after passage of the landmark Americans with Disabilities Act (ADA), which prevents discrimination against individuals with mental or physical impairment. The timing, the impact, and Brooke’s incredible contributions converged perfectly.
She turned her disability into a purpose.
I must recognize Harvard University. The school wasn’t necessarily prepared to handle a situation like Brooke’s. But leadership at the school did and thankfully so. Brooke was the first-ever quadriplegic student to graduate from this prestigious university.
Family. What can you say about her mother, Jean’s devotion. The selflessness, her determination, her love for her daughter and the cost to the rest of the family were significant. Many of us understand the challenges and strain that having a child with special needs can place on a family. When Brooke and her mother went to Harvard, five hours from the family home, there was tremendous family sacrifice. Her father, Edward, stayed behind at the family home and helped raise Brooke’s two siblings, while navigating the myriads of medical bills and a job of his own.
Not all of us could do what the Ellison’s did. It’s not easy, however, with the right support in place, family, and attitude, it can work for some families. The Ellison’s faced a lot and they can look back on Brooke’s legacy as one of true accomplishment and progress for the disability community.
I am glad I took my path of turning my disability into a purpose. And we all owe Brooke that same gratitude. She was a trailblazer, and it is up to us to keep her drive and spirit alive.
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