Harvard Alumni Asked to Join New People with Disabilities SIG as an Act of Solidarity in Allyship Event

Article written by Nancy J. Coombs - Originally published by Harvard Club of Toronto

The Harvard Alumni Allyship Series’ latest event, on June 2nd, featured a conversation with Brooke Ellison on Allyship with People with Disabilities. The Harvard Club of Toronto was one of many co-sponsoring clubs and shared interest groups (SIGs) of this global gathering, hosted jointly by the Harvard Clubs of Boston and Ireland. At the heart of the discussion was identifying what able-bodied people can do to make the world more accessible to all, within the Harvard community and more broadly.

Ellison -- an Associate Professor at Stony Brook University and Director of Education and Ethics at the Stony Brook Stem Cell Facility -- graduated from Harvard College in 2000, in cognitive neuroscience, then earned an MPP at the Harvard Kennedy School in 2004. She completed a PhD in Sociology from Stony Brook University and is a policy and ethics expert in stem cell research. Brooke co-founded VENTure Think Tank, advising on policy and technological solutions for ventilator users, and is also Associate Director of the Center for Community Engagement and Leadership Development which empowers underserved communities. In 2014, she was named a World Economic Forum Young Global Leader, elevating stem cell research and advocating for people with disabilities.

Matthew Hegarty, Harvard Club of Boston’s President, opened the discussion by outlining ambitious plans for its historic building, a “reckoning”, he said, making it at last fully accessible. “Our world is a better place when everyone is a part of it.” Bob Manson, founder of the Allyship series and HAA Director, in turn warmly called Ellison “my classmate [from the Kennedy School], soulmate and friend”.

Ellison told participants how, at age 11 in the seventh grade, she was hit by a car, leaving her paralyzed from her neck down and on a ventilator after a previously active lifestyle. Her family was told she “wouldn’t be able to interact with the world in any meaningful way” due to a lasting spinal cord injury. After a long rehabilitation, she faced the toughest challenge yet: “I had become disabled in an instant but had to learn how to be disabled, gaining strength, empowerment, and creativity,” she said. She decided to “never let my physical condition limit me more than it had to.”

Though often described as “the first quadriplegic to graduate from Harvard” Ellison does not like that term. “I am not a set of physical conditions.” In agreement, Manson said, “For those who know Brooke, she’s one who makes an outsized contribution to the world who just happens to have a disability.”

She credits her time at Harvard with helping her understand “my intrinsic worth” as “I actively rewrote the narrative of my life.” Brooke published Miracles Happen in 2002, a memoir turned into a movie directed by Christopher Reeve.

In a subsequent conversation for this article with Ellison and Manson, she expanded on many topics including her new book coming out this fall, Look Both Ways. After her fortieth birthday, she was gravely ill, having developed a severe pressure ulcer that burrowed into her body which “can be the death knell of paralysis” as it was for her dear friend, Reeve. She was diagnosed in October 2018 with a bone infection and put on “round after round of antibiotics” for eight months. Having survived, she wrote the book the following summer of 2019.

“I poured my heart out, putting everything into words – lessons that had taken me years to learn.” She tends to “intellectualize things but this book shows a vulnerable, yet empowered, side to my life.” Addressed is life, love, facing struggles, keeping up the fight. The pandemic, Ellison said in the event, has “placed a glaring light on fractures that already existed. People with disabilities have to fight for things others take for granted.” She cited higher poverty levels, limited access to healthcare, and educational barriers leading to a large economic loss due to this exclusion of talent.

“People with disabilities are the bravest, most determined, most willing to hope for a better world,” she said. “We need to deconstruct how we value people of all backgrounds,” saying that disability is found in every race, ethnicity, and sex. To fight this, she says, “Be creative in responding to how humanity fails.”

“Bob is a visionary,” Ellison said. “He has exercised leadership” and has been willing to take on that challenge. Manson responded, talking about effectuating change, “It is never the wrong time. It is always the right time to do the right thing,” he said in the later talk. He encourages people to think about their broader physical environment, of home and of country, but to begin by reflecting on “the world inside our heads” leading to “a reset of how we view the world.” An Adaptive Leadership course at the Kennedy School, which both Manson and Ellison took, was key in shaping both of their collaborative approaches. “Mark Zuckerberg brought us together,” he joked, highlighting how their friendship was rekindled on Facebook.

Manson, whose son, George, has Down’s syndrome, talked about his family’s challenges, saying, “In this community, we get pity. We don’t want pity. We want respect and to be included.” He spoke passionately about the value of simple acts, of “being kind and proactive – go out and do things!” He would be delighted, he said by way of example, if someone phoned to arrange a playdate with George. To Manson, “the cumulative effect of people being kind to one another can change the world and is at the root of peace.” “Bob has elevated the conversation around disability for years,” Brooke chimed in. “His activism in raising awareness has been so moving to see.”

As for future steps for the Harvard community, Ellison commented that “the HAA represents great privilege and opportunity, but these are not easily offered to someone with a disability.”

She recounted how – when she finished Harvard -- she could not make use of advantages normally afforded to graduates. “The door had a flight of steps up to it.”

“Given the breadth of its network and the power it commands”, more should be done, she said, to “open doors and give people access.” She said that the HAA has the power to “shape conversation and the way people talk”. All Harvard graduates, acting together, can be “the change agent in how the system operates.” She also encouraged people to get involved in the SIG being formed for People with Disabilities, noting with regret that there has not been one up to now. “Shared as a qualifier is central – this is open to all. No work can be done within one group alone; it only works with other groups, shoulder-to-shoulder.” Daniel Florio, a lawyer and Kennedy School grad who has a disability, is a key leader in the emerging SIG.

Ellison said that behaviour can change before policy changes. “Don’t place the work on someone else.” Manson believes that “the golden rule” is the cornerstone of allyship but “all across the board. Don’t be selective in applying it.” He went to warn against “a false sense of morality.” She stated in practical terms some adaptations that are important to consider: networking on golf courses, for example, excludes her. Also, when conducting meetings, people with disabilities may need to step out of the gathering.

For Harvard graduates to make a lasting difference to people with disabilities, she has the following recommendations:

Provide a career path, and leadership role, not just a job.

Look for more representation in the media, and also in entertainment, guarding against stereotypes as “the frustrated, or token, disabled person”.

Facilitate opportunities for workshops around providing access for people with disabilities. “There are conversations to be had,” Brooke said.

In the event, Ellison said no topic was off-limits. The event’s lively Q & A included one about “hidden disabilities” such as emotional and intellectual challenges. Another question posed by Colin Kegler, HAA Director for Harvard College, featured a Margaret Mead quote, indicating that the first sign of civilization is a broken then healed femur [thighbone], as humans – unlike animals -- take care of the injured, the needy.

Manson said, “We all have a stake in this” and “the measure of a society is how it looks after the most vulnerable. We don’t live in isolation – we live in society. Lots of us are born into privilege that we haven’t earned,” he said. “We have a responsibility to watch out for one another – the basic code of life – rather than every man for himself.”

In conclusion, Ellison said, “Bob’s series demands attention and action.” By laying out the initial steps, “it asks people to think harder about how they behave and do things.”

Manson, while hailed as the Allyship series’ founder, stressed that “there is no ownership of this – everybody owns this.” The series’ goals, he said, are to highlight Harvard alumni’s stories from within marginalized communities and to take action. For Ellison, a guiding principle is that “everyone has something of value to contribute. Use your position and leadership to make sure all have a seat at the table. Be active, be local, be an ally.” Manson – who called Ellison’s remarks “spellbinding – asked participants to help get the SIG going, mobilizing their networks. “The task is enormous – let’s get to work!”

The allyship series will continue as long as there are individuals, or groups, within the Harvard community that feel excluded. Planning for future events is ongoing, and Manson welcomes suggestions at Robert.Manson@pembrokehall.ie For more information about Look Both Ways, visit brookeellison.com/look-both-ways