Sickle cell advocate and health care trailblazer Lillie Johnson turns 100
March 30, 2022
Actor Damian Brown and Lillie Johnson paths crossed 15 years ago shortly after he came to the Greater Toronto Area to pursue higher education.
On a full academic scholarship at York University, their chat ended with her asking for his mailing address.
Brown didn’t think much of the request.
About three days later, he received a cheque from Johnson who never married and has no children.
“I was shocked,” said Brown who graduated in 2009 with a Political Science & Theatre Arts degree. “She did mention that I should let her know if I needed anything, but I was on a scholarship and that was the only thing I had going then. This was an elderly woman and I said I am fine, but thank you. However, she sent me several cheques even though I kept telling her she didn’t have to do it. She said the money was to buy soda.”
When Brown, who left Jamaica in 2005, lost a 30-page essay on his computer, Johnson comforted him and offered advice.
“When I told her what happened and all I had was a few written notes, she said things happen for a reason and we are going to figure it out and make something happen,” he recalled. “She told me that if I wrote it, I understood it and that I should take a deep breath and rewrite the essay. I did and received an ‘A’ plus.”
Accepted into law school, the 2003 United Nations Population Fund International Goodwill Youth Ambassador for the Caribbean called her to say he wanted to pursue Acting instead.
“Her response was that if that was what I wanted, I should go for it,” recounted Brown who resides in the United States and recently completed a 10-episode television sitcom, ‘House Out Of Order’. “She was so very inspiring and she motivated me to achieve my goals.”
Former Jamaica Canadian Association president Karl Fuller presents a Special Achievement Award to Lillie Johnson (Photo by Ron Fanfair)
A woman with a heart of gold, Johnson – who resides at Extendicare Rouge Valley in Scarborough -- turned 100 on March 16.
“To be a centenarian is an outstanding achievement in itself,” said former Ontario Cabinet Minister Mary Anne Chambers. “Add to that the many lives she has touched and made better because she has always been so determined to advocate and care for others with little regard for herself and her needs.”
Born in Westmoreland to parents who were educators, Johnson taught in elementary schools in Jamaica before going to Scotland in the early 1950s to pursue nursing.
After finishing her studies, the Registered Nurse returned to Jamaica and was at the University College of the West Indies hospital before going to New Jersey in 1958 to take up a position at Newark Beth Israel Medical Centre. She came to Canada two years later to work for Canadian Red Cross that was looking for nurses for Ontario outposts.
Johnson was assigned to Red Lake which is nearly 100 kilometres from the Manitoba border. She later transferred to St. Joseph’s Health Care Centre in Toronto.
She was the first Jamaican to train as a nurse at Western General Hospital where she graduated in 1954, the first Black midwife in Oxfordshire in England’s southeast in the mid-1950s and the first Black Director of Public Health in Eastern Ontario in 1961.
During her time with the Leeds, Grenville & Lanark District Health Unit, Johnson advocated for better conditions for Caribbean farmworkers in the area.
In 1981, she started the Sickle Cell Association of Ontario, initially conducting its work from her residence.
Sickle Cell Association of Ontario president Tiney Beckles (r) & Lillie Johnson in November 2016 (Photo by Ron Fanfair)
Sickle cell disease is a life-threatening and hereditary blood disorder that causes malformation of red blood cells that become distorted when they transmit oxygen through the body while thalassemia is an inherited blood disorder in which the body is unable to process normal functioning hemoglobin.
Invested into the Order of Ontario in 2011, Johnson was exposed to sickle cell disease and its effects after taking a summer course in genetics.
Order of Ontario 2011 recipient Lillie Johnson with then Lieutenant Governor General David Onley (Photo by Ron Fanfair)
She has dedicated her life to educating sicklers and their families, health care practitioners, policy makers, educators, governments and the public about the symptoms and implications of the disease.
“As a public health nurse, her frontline exposure to the detrimental effects of the disease gave her a good understanding of its painful and debilitating nature,” Chambers pointed out. “Her own research and formal training informed her conviction that with early detection and appropriate interventions, people afflicted with sickle cell disorders can live productive lives without the frequent and seemingly unpredictable and characteristic crises that can lead to early death for some, severely limited physical abilities for others and periods of absence from the workforce and the education system.”
Liberal Member of Parliament Judy Sgro makes a presentation to Lillie Johnson (Photo by Ron Fanfair)
In December 2010, federal Minister Dr. Kirsty Duncan tabled a bill calling on the government to create a comprehensive national strategy for sickle cell disease and thalassemia disorders.
A bill was also drafted calling on the Canadian government to officially recognize June 19 as National Sickle Cell Awareness Day. Canadian Senator Jane Cordy introduced Bill S-211 that was passed by the House of Commons in November 2017.
She met Johnson who was in Ottawa educating Senators and Members of Parliament about sickle cell disease.
“Miss Lillie has been a tireless advocate for those with sickle cell and she has embraced that community as if they were her family,” said Cordy at the virtual birthday celebration.”
Lillie Johnson with Share newspaper publisher Arnold Auguste (l), Basil Blackman of Barbados House (Canada) & Joan Montgomery of the Kidney Foundation (Photo by Ron Fanfair)
Johnson’s sustained passion as a sickle cell advocate resulted in the province’s Ministry of Health & Long-Term Care including sickle cell disease on the list of genetic diseases for universal newborn screening in 2005.
After retirement in 1988, she volunteered with Canadian University Service Overseas (CUSO) in Jamaica for six years, providing treatment and health information to residents in disadvantaged communities. She later served on the CUSO advisory committee on her return to Canada.
Lillie Johnson was a Pan Am Games torchbearer in July 2015 (Photo by Ron Fanfair)
Johnson co-founded TAIBU Community Health Centre in 2008 to provide quality and culturally appropriate primary health care and related services to the Black communities in the Greater Toronto Area as its priority population and Malvern residents.
“If there is anything I have learnt from Miss Lillie, it is to fight,” noted TAIBU Executive Director Liben Gebremikael. “You should fight for those who really need some changes in their lives and fight for those who deserve better. She has contributed greatly to making our organization a success.”
TAIBU 2012 board members Eunadie Johnson (l), Debbie Charles, Earl Charlemagne, Sickle Cell Association of Ontario president John Kirya and Liben Gebremikael (l). Sitting are Lillie Johnson (l), Floydeen Charles-Fridal and Sheryl Bernard (Photo by Ron Fanfair)
Johnson was also an active member of the Black Health Alliance, a network of community organizations, health professionals and community members working to advance the health and well-being of the Black community, Westmoreland Basic School Support and the Project for the Advancement of Childhood Education (PACE).
In March 2015, her biography – ‘My Dream’ – was launched at the Jamaican Canadian Association Centre.
“Retirement only gave Lillie the opportunity to do more,” 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.”
Lillie Johnson launched her biography in March 2015, a day before her 93rd birthday (Photo by Ron Fanfair)
Johnson was named the 2009 Public Health Champion by the City of Toronto’s Board of Health for her outstanding contributions to protecting and promoting the health of city residents.
The Lawrence Bloomberg Faculty of Nursing at the University of Toronto where Johnson was a part-time student in the 1960s honoured her with a Distinguished Alumnus Award in 2011 for her lifelong commitment to health care and sickle cell.
Six years ago, the Ontario Long Term Care Association bestowed Johnson with a Lifetime Achievement Award.
