I’m late for a Zoom meeting with Lily Collison to discuss Pure Grit, the book she co-wrote with her friend Kara Buckley about 19 Amazing People Born with, or Who Acquired, a Physical Disability at an Age of training.
Lily smiles and raises her hand to silence me as I try to explain the delay – no car seats when I drop my child off at a sports camp – and says she understands the challenge of juggling work. and children’s education.
Lily has a background in science and is now retired from a career in industry and education. She lives in Sligo and is the mother of billionaire entrepreneurs Stripe, John and Patrick, and Tommy who works for Lambda, an online coding school in California. Lily has previously written a book Spastic Diplegia-Bilateral Cerebral Palsy on Tommy’s disease.
Lily and Kara (who live in the United States and work for the United States Olympic and Paralympic Committee) have spent the past year interviewing people with physical disabilities who have flourished in various fields. Among them is Irish Paralympian swimmer Patrick Flanagan, one of 29 athletes from Team Ireland who is currently warming up in Tokyo for the start of the games on August 24.
The idea came when Kara sent Lily (they are at a book club together) a book by Cindy Kolbe about life after a car accident that left her 14-year-old daughter, Beth, crippled.
“This book elicited a strong reaction in me because it showed the power of simply seeing what is possible. When Beth was around 16, she spotted a notice board of a Harvard graduate student in a wheelchair, and it changed her life. I spoke to Kara that we were writing a book on models, to shed light on the possibilities. Today Beth, a Harvard graduate and retired Paralympian swimmer, works as a lawyer in Washington and is featured in Pure Grit. By writing about people like Beth – including people of different ages in various fields – we hope there are many nuggets that people can relate to, ”she says.
Participation in society
Based on her experience raising a child with a physical disability, Lily says she would like to see more equal life chances and outcomes for these 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 which showed that, compared to the general population, people with spastic diplegia have lower rates of employment, relationships, and children. Research in other countries has confirmed this finding and it bothered me so much – that people with mild / moderate physical disabilities without cognitive impairment have lower participation rates in society. “
Swimmer Patrick Flanagan made headlines last weekend when he tweeted that his wheelchair was damaged on the first leg of the flight to Tokyo – and in his chapter of Pure Grit, he emphatically explains how his chair represented freedom to him. Growing up, as a treat, he was allowed to bring it to school on a Friday.
The stories contained in the book check prejudices often applied to people with disabilities; topics covered include negative attitudes during 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 icons of disability rights 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 have been recommended. We emailed and asked and were shocked when everyone immediately said yes, ”she said.
Problems in the workplace
Each story is compelling and covers a wide range of interests: Robin Barnett, a retired diplomat and former British Ambassador to Ireland who suffers from hemiplegia (a type of cerebral palsy), says the ideal job market situation is to be able to ask for help, but to be treated like any other employee; Daniel Diaz, a Brazilian Paralympic swimmer born with incompletely trained limbs who has won 24 medals to date (he is expected to surpass Michael Phelps’ record in Tokyo), says his goal growing up was to strive to be better than he was. was the day before; Ila Eckhoff has cerebral palsy and is the Managing Director of Blackrock in New York (the world’s largest asset management company) and she explains how workplaces can help or hinder; Swimmer Ellie Cole, a cancer amputee, memorable featured in Netflix’s Rising Phoenix documentary last year about the Paralympic Games, shares how she refused to let others treat her differently from her peers.
Halli Thorleifsson, who now works for Twitter after buying the company he founded (Uena), describes how he has never met another wheelchair user in thousands of design / tech meetings over the course of his 20-year career and more. With such a large tech industry in Ireland, this should give some food for thought.
Each story is an inquiry into the state of mind about how to move forward with purpose when one stumbles, which Lily says will help all readers – disabled and non-disabled.
“All the profiles know, or have learned, how to get up. As Ila Eckhoff says, grain triumphs over talent because a person with above average grain will go much further than a super intelligent person without grain. We think there are takeaways from the book for everyone on how to make changes in their approach so they can live their best lives, ”says Lily.
Almost all of the people interviewed pointed out that their parents never wrapped them in cotton.
“We need to bring up our children, both disabled and non-disabled, to be as independent as possible, so we need to allow children – and ourselves – to learn from our mistakes. For example, children with my son’s disease have difficulty balancing, but we have to be careful not to become overprotective and unwittingly stifle their learning opportunities, ”says Lily.
“Lex Gillette, the blind American Paralympic long jumper was cleared to cycle with his cousins; Chantal Petitclerc, retired Canadian senator and Paralympian, advises parents of children with disabilities “Don’t be overprotective, even if it’s a human reflex”. Paralympian Patrick Flanagan says he has noticed that many children with disabilities appear to be enveloped in bubbles. His family’s attitude was “you have to try everything, you have to try hard” – limitation may be more of a mental attitude than a physical one. “
She adds: “I have always felt this; when he was raising Tommy, his needs were different for each of his brothers, but the same parenting principles applied at all levels. They demanded the same thing – that people believe in them. The common thread of these stories is to have adults who believe in them. Not necessarily parents, it could be a teacher, a grandparent or someone from the community.
A number of people interviewed point to the power of people without disabilities to improve the lives of people with disabilities. “You can break down barriers, fight stigma and discrimination, treat people fairly. After all, physical disability is very common and may affect your life one day, even if it isn’t.
While Pure Grit is all about success, it doesn’t gloss over the painstaking steps required to get there – it’s not about “inspiring” people, the book is about sticking to something and in this way to be successful.
“It’s not about overcoming the disability, but rather about accommodating it,” says Lily.
I mention that Tom Shakespeare says he thinks negative attitudes are changing and I mention how in my child’s camp that morning, despite the lack of spaces, the parents had shown respect and no one had Quickly took advantage of the disabled spaces with flashing dangers, but Lily is quick to clear me up.
“It is not enough that no one park in these spaces for the disabled. They should be filled out so that we know that children with disabilities are participating – and not just symbolically, but in the thick of it, like everyone else. “
Pure Grit: Stories of Remarkable People Living with Physical Disability is available on Eason and on Amazon in print (€ 13) and ebook (€ 8.50). All profits go to research