Sickle Cell Association of Ontario (SCAO) founder, Lillie Johnson, is a woman of several firsts.
The nonagenarian was the first Jamaican to be trained as a nurse at Western General Hospital in Scotland where she graduated in 1954, the first Black midwife in Oxfordshire in the south east of England in the mid-1950s and the first Black director of public health in Eastern Ontario in 1981.
Johnson, who celebrated her 93rd birthday last Monday, is also many things to many people as was revealed last Sunday at the launch of her biography, My Dream, at the Jamaican Canadian Association Centre.
Twelve years ago, Sandria Gillespie and Johnson met for the first time at a provincial courthouse.
Johnson was there to support a young mother with sickle cell disease who was separated from her children while Gillespie – who was suffering from post-partum depression – was fighting to regain custody of her five children.
“Lillie counselled me about what post-partum depression was all about and assured me I would get back my children,” said Gillespie at the book launch. “She was right because I got to keep my children with court supervision for a brief period and in 2012, I gave birth to my sixth child. All of my children are in good health and enjoying life.”
Actor Damian Brown and Johnson’s paths crossed eight years ago as he was about to enter York University.
“I had a full academic scholarship when I ran into her and one of the things she did was ask for my mailing address,” said the 2003 United Nations Population Fund International Goodwill Youth Ambassador for the Caribbean who earned a degree in political science and theatre arts. “About three days later, I received one of several cheques from her to assist with my schooling. She has been there for me every step of the way including the time when I lost a 30-page essay on my computer. When I told her what had happened and all I had was a few written notes, she told me that if I wrote it, I understood it, so I should take a deep breath and rewrite the essay. I did as she said and received an A plus mark.
“I have become a big supporter of the Sickle Cell Association of Ontario, volunteering whenever I can and whenever I have to make a career decision, I consult her and she supports my decision. When I was accepted into law school a few years ago, I called her to say I wanted to pursue acting instead of law. She told me if that was what I wanted to do, I should go for it.”
The book is part of the Canada 150 Memoirs Project. To celebrate this country’s 150th birthday in 2017, the federal government is encouraging the recording and collecting of life stories, family histories and community and organization histories.
Individuals and groups are encouraged and supported to donate these records to Library and Archives Canada as a book, video or audio tape, multi-media format or as a copy of a web site.
Johnson’s biography emerged from the $25,000 grant the Toronto Hakka Seniors Association received for the project.
Irish-born Canadian Margaret Williams, who is married to a Jamaican Hakka Chinese resident in Toronto, assisted with the book design, printing and publication.
“This book has been a few years in coming,” she said. “One of the traits me and Lillie have in common is perseverance and some may call it stubbornness. We audio-recorded a series of interviews which I transcribed and organized into the book chapters. I also scanned in the photos that Lillie chose from her storage of pictures over the years as well as her many awards and certificates.”
Former JCA president, Audrey Campbell, paid tribute to Johnson, who came to Canada in 1960 to work for the Canadian Red Cross, which was looking for nurses for Ontario outposts. She was assigned to Red Lake, which is nearly 100 kilometres from the Manitoba border. On arriving in Toronto, she was able to exchange that posting for one at St. Joseph’s Hospital.
“Lillie is a distinguished woman of the JCA,” said Campbell. “Fierce and determined, she is among a special group of women who are the backbone of this 53-year-old organization.”
An Order of Ontario recipient four years ago, Johnson spent time at The Hospital for Sick Children, where she pursued pediatric studies for her provincial registered nurses accreditation and also took a summer course in genetics that exposed her to sickle cell disease and its effects.
After retiring in 1988, she volunteered with Canadian University Service Overseas (CUSO) in Jamaica for six years, providing treatment and health information to residents in poor and disadvantaged communities. She later served on the CUSO advisory committee when she came back to Canada.
Johnson is also a member of the Black Health Alliance, a network of community organizations, health professionals and community members working in collaboration to advance the health and well-being of the Black community, the Westmoreland Basic School Support and the Project for the Advancement of Childhood Education (PACE).
“Retirement only gave Lillie the opportunity to do more of what she wanted,” PACE founder, Dr. Mavis Burke, said in the book’s foreword. “Her clear mind and articulate expression made her a valuable member of any team and her strenuous efforts to launch and maintain the important sickle cell society have assured her a place in history as the awards she has received from a grateful society have shown.”
Funds accrued from the sale of the books will go to the SCAO.
For the past three decades, Johnson has dedicated most of her life to the education of “sicklers” and their families, health practitioners, policy makers, educators and government about the symptoms and implications of the hereditary disorder that affects mostly people of colour.
Her sustained passion as a sickle cell advocate resulted in the province’s Ministry of Health and Long Term Care including sickle cell disease on the list of 28 genetic diseases for universal newborn screening in 2005.
Four years ago, the Lawrence Bloomberg Faculty of Nursing at the University of Toronto honoured Johnson with a Distinguished Alumnus Award for her lifelong commitment to health care and sickle cell advocacy.
She studied part-time at the university’s nursing school in the 1960s.