Remembering PACE “Life Member” & Centenarian Lillie Johnson

As Published in The Gleaner Thursday | August 14, 2025 | Neil Armstrong

Nothing! You know why? Looking back and comparing it with where I am now, everything that I did was a preparation for what I am doing now.”

Johnson was born in St Ann, Jamaica, to parents who were both teachers. She was one of 10 children and after graduating from Wolmer’s High School, she attended Shortwood Teachers’ College, and taught at various schools in the 1940s.
Determined to accomplish her dream, she left Jamaica for Edinburgh, Scotland, where she studied nursing from 1951 to 1954, and studied midwifery in England and worked as a domiciliary nurse and midwife in Oxfordshire from 1955 to 1957.
Returning to Jamaica in 1957, she worked as a staff nurse at the University College of the West Indies before going to work as a staff nurse at Beth Israel Hospital in New Jersey, United States.

In 1960, Johnson migrated to Canada to work for the Canadian Red Cross and subsequently worked at St Joseph’s Hospital and the Hospital for Sick Children. She was a community health nurse with the Victoria Order of Nurses and the York County Regional Health Unit. Johnson attained a Bachelor of Science in Nursing from the University of Toronto in 1969 while working full-time.

She was a master teacher in the health sciences division at Humber College; a nursing consultant with the Ministry of Health in Ontario; the first Black director of public health, Leeds-Grenville and Lanark District in eastern Ontario; and after retiring worked with CUSO International in Jamaica as a community health nurse.

Working with others, she founded the Sickle Cell Association of Ontario in 1981, after learning about sickle cell anaemia in a summer course in genetics at the University of Toronto in 1980.

“It was an eye-opener for me and a catalyst for my decades-long quest to raise awareness of the disease,” writes Johnson in her memoir. That mission resulted in her being appointed to the Order of Ontario in 2010 for outstanding service to the sickle cell community.

Over her 103 years, Johnson received many accolades from the Jamaican Canadian Association, Coalition of Black Trade Unionists, African Canadian Achievement Award, P.A.C.E. Canada, Victoria Jubilee Award, City of Toronto, and the Bloomberg School of Nursing, University of Toronto.

On November 14, 2023, she was awarded the Order of Canada and invested at a special investiture ceremony on February 27, 2024, at Extendicare Rouge Valley in Scarborough where she resided.

The citation noted that Johnson led the Sickle Cell Association of Ontario for four decades, “encouraging greater understanding of the disease at the public and academic levels, and successfully lobbying for its inclusion in newborn screening in Ontario. She has also been involved in the development of specialty organisations to further address the health needs of the Black community”.

Dr Karen Flynn, Terrance & Karyn Holm Endowed Professor in the Department of Population Health Nursing Science at the University of Illinois, Chicago, describes Johnson as a “pragmatic public intellectual”.

“Not because it sounds fancy, but because it encompasses who she truly was. For example, before interdisciplinary and multidisciplinary became a thing, Lillie had already mastered the art of collaborating. To actualise racial justice in healthcare for Black communities, Lillie partnered with government bodies, educational institutions, medical personnel; any organization or individuals committed to health equity for those on the margins.”

Flynn said it was Johnson’s spirit of collaboration and her tireless efforts that led to the 2005 universal newborn screening (UNS) for 28 genetic diseases, of which sickle cell was one.

“This remarkable achievement is a testament to Lillie’s vision, fortitude and commitment. Lillie has left a legacy that those of us in the here and now can learn from,” said the professor who has written extensively about Johnson and other Caribbean and Black Canadian nurses.

Adaoma Patterson, a past president of the Jamaican Canadian Association (JCA), said Johnson was a founding member of the JCA.

“As I indicated in my nomination letter for Miss Lillie’s Order of Canada, she has led a true life of service, using her skills, talents, and passion to make life better for others and serves as a testament to the statement ‘lifting as we climb.’ Miss Lillie’s work and efforts created awareness about sickle cell disease, its impact on black and other communities, and pushed to ensure our healthcare systems paid attention to this disease through research and adequate funding. We are all better off having known her. Her work here is now done. May she rest in eternal peace.”

“Lillie was a woman of fearless conviction and great kindness, who was also quick to laughter. She brought her whole self to everyone, and was dearly loved,” said close friend, Elaine Thompson.