I'm running late for a Zoom meeting with Lily Collison to discuss Pure Grit, the book she has co-written with her friend Kara Buckley about 19 extraordinary people born with, or who acquired, physical disability at a formative age.
Lily smiles and holds up her hand to silence me as I try to explain the delay – no car spaces when dropping my child at a sports camp – and says she understands the challenge of juggling work and raising children.
Lily has a background in science and is now retired from a career in industry and education. She lives in Sligo, and is mother of Stripe billionaire entrepreneurs John and Patrick, and Tommy who works for Lambda, an online coding school in California. Lily previously wrote a book Spastic Diplegia-Bilateral Cerebral Palsy about the condition Tommy has.
Lily and Kara (who lives in the US and works for the US Olympic and Paralympic Committee) have spent the last year interviewing people with physical disabilities who have thrived in diverse fields. They include Irish Paralympian swimmer Patrick Flanagan, one of the 29 athletes on Team Ireland currently warming up in Tokyo for the start of the games there on August 24th.
The idea came about when Kara sent Lily (they are in a book club together) a book by Cindy Kolbe about life following a car crash that left her 14-year-old daughter Beth paralysed.
“That book provoked a strong reaction in me because it showed the power of just seeing what is possible. When Beth was around 16 she spotted a billboard of a Harvard student graduating in a wheelchair, and it changed her life. I talked to Kara about us writing a book on role models, to shine a light on possibility. Today Beth, a Harvard graduate and retired Paralympian swimmer, works as a lawyer in Washington, and she features in Pure Grit. By writing about people like Beth – including people of different ages in diverse fields – we hope there are many nuggets that people can relate to,” she says.
Participation in society
Based on her experience of rearing a child with a physical disability, Lily says she would like to see more equal life chances and outcomes for such people.
“My youngest son Tommy [now in his mid-20s] has a common type of cerebral palsy. While writing a book about his condition, I read a Dutch research paper that showed, compared with the general population, people with spastic diplegia have lower rates of employment, relationships and having children. Research from other countries bore out this finding and this bothered me so much – that people with just a mild/moderate physical disability with no cognitive impairment have lower rates of participation in society.”
Swimmer Patrick Flanagan hit the headlines last weekend when he tweeted that his wheelchair was damaged on the first leg of the flight to Tokyo – and in his chapter in Pure Grit he talks powerfully about how his chair represented freedom for him. Growing up, as a treat he was allowed to take it to school on a Friday.
The stories within the book check prejudice often applied to people with a disability; topics raised include negative attitudes when going for a job interview, when the need for birth control is questioned and when deciding to become a parent.
How did Lily and Kara decide who to include in the book?
"Some are international disability rights icons like Judy Heumann [based in Washington and who contracted polio as a child] and Tom Shakespeare [has restricted growth and is a social scientist and writer in the UK]. Some are current or former Paralympians. Some were recommended. We emailed and asked and were shocked when everyone immediately said yes," she says.
Workplace problems
Each story is engrossing and covers a wide range of interests: Robin Barnett, a retired diplomat and former British ambassador to Ireland who has hemiplegia (a type of cerebral palsy), says the ideal situation in the workforce is being able to ask for help but being treated like any other employee; Daniel Diaz, a Brazilian Paralympic swimmer born with incompletely formed limbs who has won 24 medals to date (he is expected to overtake Michael Phelps's record in Tokyo), says his goal growing up was to seek to be better than he was the day before; Ila Eckhoff has cerebral palsy and is managing director at Blackrock in New York (the world's biggest asset management company) and she discusses how workplaces can help or hinder; swimmer Ellie Cole, an amputee as a result of cancer, memorably featured in Netflix's Rising Phoenix documentary last year about the Paralympics, talks about how she refused to let others treat her differently to her peers.
Halli Thorleifsson, who now works for Twitter after they bought the company he founded (Uena), describes how he has never met another wheelchair-user in thousands of meetings in design/tech in his 20-year-plus career. With such a large tech industry in Ireland, this should provide food for thought.
Each story is an investigation into the mindset of how to push on with determination when tripped up, which Lily feels will help all readers – disabled and nondisabled.
“Everyone profiled knows, or has learned, how to get up again. As Ila Eckhoff says, grit triumphs talent because a person with above-average grit is going to go a lot further than somebody who is super smart with zero grit. We feel there are takeaways in the book for everyone on how to make changes to their approach so they can live their best lives,” says Lily.
Bubble-wrapped
Almost all of the interviewees stress how their parents never wrapped them in cotton wool.
“We have to raise our children, disabled and non-disabled, to be as independent as possible, so we have to allow children – and ourselves – to learn from mistakes. For example, children with my son’s condition have difficulty with balance, but we should be careful not to become overprotective and unintentionally stifle their opportunities to learn,” says Lily.
"Lex Gillette, the blind US Paralympic long jumper was allowed out cycling with his cousins; Chantal Petitclerc, Canadian senator and retired Paralympian, advises parents of disabled kids 'Don't be overprotective, although it's a human reflex.' Paralympian Patrick Flanagan says he has noticed many children with disabilities seem to be bubble-wrapped. His family's attitude was 'you've got to give everything a go, you've got to try hard' – the limitation may be more a mental attitude than a physical one."
She adds: “I always felt this; when raising Tommy, his needs were different to each of his brothers but the same parenting principles applied across the board. They required the same thing – to have people believe in them. The common thread in these stories is having adults believing in them. Not necessarily parents, it could be a teacher, a grandparent or someone in the community.”
A number of the interviewees stress how non-disabled people have the power to improve the lives of disabled people. “You can remove barriers, challenge stigma and discrimination, treat people fairly. After all, physical disability is very common and is likely to affect your life, one day, even if it hasn’t yet.”
While Pure Grit focuses on success, it does not gloss over the painstaking steps required to arrive there – it is not about “inspiring” people, the book is about keeping at something and in this way succeeding.
“It is not about overcoming disability but rather accommodating it,” says Lily.
I mention Tom Shakespeare says he feels negative attitudes are changing and I mention how, at my child’s camp that morning, despite the dearth of spaces, parents had shown respect and nobody had quickly availed of the disability spots with hazards flashing, but Lily is quick to put me straight.
“It’s not good enough nobody is parking in those disabled spaces. They should be filled so we know disabled children are participating – and not just token participating but in the thick of it like everyone else.”
Pure Grit: Stories of Remarkable People Living with Physical Disability is available in Eason and on Amazon in print (€13) and ebook (€8.50) format. All proceeds go to research
