Counter-Storytelling for Social Change - Part 2: Miss Lillie Johnson
Counter-Storytelling is “a method of telling the stories of people whose experiences not often told.” By telling these stories, we can expose, analyze, and challenge racism as well as promote social justice. In this series, we tell counter stories to highlight the challenges and triumphs around community advocacy and Sickle Cell Disease.
Beginning in the 1960s, Black Nurses in Canada and the United Kingdom, who were also battling workplace anti-Black racism, advocated for care for Sickle Cell Disease. In honour of Nursing Week, this article explores counter-storytelling through some of the many accomplishments of the Canadian Sickle Cell advocate, Miss Lillie Johnson.
Miss Johnson was born in St. Ann’s parish, Jamaica in 1922. Originally a teacher, at the age of 29, Miss Johnson embarked on a journey to Edinburgh, Scotland to pursue her dream of nursing. After working in England, Jamaica, and America, Miss Johnson immigrated to Canada to practice as a nurse in 1960. While Miss Johnson endured racism in Ontario’s healthcare system, she took on numerous leadership roles, including Director of Public Health in Ontario, Master Teacher at Humber College, Consultant at the Ministry of Health, and Director of Nursing Services at the Leeds, Granville, and Lanark Health unit.
Image from Garry Asselstine (CBC)
Founding the Sickle Cell Association of Ontario
Image from Sickle Cell Association of Ontario
Among Miss Johnson’s impressive accomplishments includes founding the Sickle Cell Association of Ontario (SCAO) in 1981. With a mission to maximize the quality of life of impacted people and families, Miss Johnson worked out of her home to deliver an extensive Sickle Cell Disease outreach and advocacy program. Sickle Cell Disease was not on the medical research agenda and was invisible in Canadian society. Impacted people in Ontario, who, at the time, were mostly newcomers from Caribbean communities, had very little institutional and medical support.
Universal Newborn Screening for Sickle Cell Disease
Beginning in 1981, Miss Johnson and SCAO went to Queen’s Park every year to lobby the government for Universal Newborn Screening – which, in identifying babies with Sickle Cell Disease for treatment, would save lives. A quarter century later, Universal Newborn Screening in Ontario for SCD was finally passed into law, helping prevent unnecessary suffering and death.
The Blueprints for Comprehensive Care
Today, there are seven centres in Ontario providing comprehensive care to people with Sickle Cell Disease, Thalassemia, and other Red Blood Cell Disorders. These centres care for patients using a multi-disciplinary approach. In her memoir, My Dream, Miss Johnson writes:
“It is my conviction that instead of taking a medical approach to sickle cell disease we need to be practicing a multi-disciplinary approach to its treatment. Not only should we be looking at the diagnosis and treatment, but asking who am I when I am not in a sickle cell disease crisis? … I say multi-disciplinary rather than holistic because the doctor seems to believe that he’s the only one treating it but I want to look at the nurse, the social worker, the psychologist, the teacher, everyone with whom they come into contact. All are important in the treatment of disease ”
In many ways, Miss Johnson envisioned the multi-disciplinary approach to care currently available to people with Sickle Cell Disease in Ontario.
Miss Lillie Johnson’s Memoir, My Dream
A Trailblazer
Today, Miss Johnson is 101-years-old. She holds numerous prestigious awards, including the Order of Ontario – the highest honour in Ontario – and Toronto Public Health Champion. She has been an advocate for Sickle Cell Disease, newcomers, Black health, Indigenous Peoples, migrant workers, and women who have survived abuse. A trailblazer, Miss Johnson’s story brings attention to the excellence in advocacy and care models for Sickle Cell Disease in Ontario.
Learn More
Check out Miss Lillie Johnson’s memoir, My Dream
Read Dr. Karen Flynn’s article, “You need to Press On”: Lillie Johnson as a Pragmatic Public Intellectual, and book, Moving Beyond Borders: A History of Black Canadian and Caribbean Women in the Diaspora
Read Ron Fanfair’s tribute, “Sickle cell advocate and health care trailblazer Lillie Johnson turns 100“
Watch Ms. Lillie Johnson speak at the 2015 Conference for Internationally Educated Nurses
About the Authors
Sinthu Srikanthan is a social worker in the Red Blood Cell Disorders Clinic at UHN. She is passionate about Anti-Racist/Anti-Oppressive practice.
Vanessa Ferguson is a Health Policy & Health Equity Ph.D. student at York University living with Sickle Cell Disease (SCD). Through her research, Vanessa aims to unveil and challenge both new and old barriers to adequate and deserved care for Black and other racialized people living with SCD.
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