Lillie Johnson has been a sickle cell champion

By Dr. Chris J. Morgan Wednesday September 24 2014 in Opinion
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June 19 is recognized internationally as World Sickle Cell Day. Although not yet globally recognized, in many regions, including the United States, September is Sickle Cell Awareness Month.


On September 20, the Sickle Cell Disease Association of Canada hosted a conference titled, “Learning together, working together, toward a better future for sickle cell disease.” On Friday, September 26 and Saturday, September 27, the Sickle Cell Association of Ontario with TAIBU Community Health Centre’s Sickle Cell Support Group will host presentations led by Dr. Kofi Anie, Clinical Psychologist from London, England addressing strategies to cope with the mental, social and physical impact of the disease.


Sickle cell disease has been growing in awareness within the community over the last decade and much of this has to be credited to the extraordinary efforts of Lillie Johnson. Born in 1922, Johnson was one of nine children and her Jamaican parents’ first daughter. Today, 92 years later, she remains one of the most passionate, committed health advocates and humanitarians I know. She is founder of the Sickle Cell Association of Ontario and was instrumental in advocating for the inclusion of sickle cell disease to newborn screening in Ontario in 2006. She is the recipient of several awards including this province’s highest honour, the Order of Ontario.


On September 26 at the Inaugural Black Health Alliance Awards, at TAIBU Community Health Centre, 27 Tapscott Rd., Scarborough ( or call 416-447-7600), Lillie Johnson will be presented with the Legacy Award for her lifelong, extraordinary commitment to advancing the health and well-being of the Black community. I have known and worked alongside Ms. Johnson since 2000 and recently had the privilege of asking her about her life’s work.


What compelled you to do community work?

I got it from my parents. Both of my parents were teachers. If a child was not in school, my father would go to their home to find out why. Oftentimes it was because the child did not have school clothes or food. Often the child was made to work in the farm field to help the family. This was child labour; it was illegal to keep children away from school.


In order to help the child, we had to help the parents. My father would go to the British landlords who owned the land these farmers worked, seeking donations for the families. He would organize fundraisers and started the first agricultural loan bank in Kings, Westmoreland. The loan bank was used to help the families start their own small scale farming by purchasing seeds and various supplies to grow their produce to be sold at the community market. The loan bank project was successful and years later some of these same farmers were able to purchase the land from the British landlords they had worked on for generations. All this time he had me and many of my siblings alongside him.


My father later became a justice of the peace, and in those days there were not many people who looked like my father who was a justice of the peace. He was a great man. He was humble and never raised his voice. Some of his students are here in Canada today.


Who were your mentors?

As I mentioned, my parents were a big influence. There was a minister in Kingston, Jamaica who did extensive community work that inspired me and several instructors and colleagues over the years who were devoted to the community they served. There were also more well-known figures like Nelson Mandela and Bishop Desmond Tutu. I would always remember something my father would say: “Stand up for what you believe in, even if you’re the only one standing up.”


How did you end up in health care?

I started off as a teacher, like my parents. I taught at the elementary level for seven years in the parishes of St. Mary’s, Portland, Westmoreland and in Kingston, but I soon realized I wanted to pursue nursing. I had an opportunity to go to Edinburgh, Scotland where I spent three and a half years to acquire my nursing diploma. I was the only Black student in the program. After obtaining my nursing diploma, I went to the hospital associated with Oxford University to become a midwife. After I completed my midwife training I returned to Jamaica and took a number of courses at the University of the West Indies.


I later left Jamaica and went to New Jersey, where I worked at Beth Israel Hospital for two years. I finally arrived in Canada, landing in Niagara Falls on June 10, 1960 by train from New York. I was able to secure a position at St. Joseph’s Hospital working on the psychiatric floor before moving on to SickKids Hospital as a graduate nurse where I subsequently acquired my Ontario Nursing Certification. I then decided to pursue a baccalaureate in Nursing and applied and was accepted as a mature student (40 years of age) at the University of Toronto School of Nursing in 1962.


After graduating from the U of T School of Nursing, I worked in York Region as a Public Health Nurse for 10 years, during this time I did some teaching at Humber College in their post-diploma course in Maternal and Child Health. I later became the Nursing Consultant for Maternal and Child Health and Family Planning for the Province of Ontario within the Ministry of Health and Long Term Care.


I learned a lot from my experiences working in different countries, caring for different people in different settings. I always went with my eyes and ears open. It was my training and experience as a midwife that stands out and consolidated my passion for working with families and children.


Among all the various health concerns you could embrace, why sickle cell disease?

I knew there were many people living with sickle cell disease (SCD) who wouldn’t tell anyone. There were also many who were undiagnosed for years and years…people were dying in the hospital. Unfortunately Canada does not have a good record when it comes to sickle cell because SCD was not and still is not a part of the core curriculum for physicians and nurses across the board. One day my supervisor at the Ministry of Health asked: “You love to do community work, why don’t you take on sickle cell disease?”


His suggestion stayed with me and finally with the help of a handful of people such as Dr. Searles, Dr. Sutton, Hyacinth Dacore and supporters like Lincoln Alexander and Dr. Graham Sergeant from Jamaica, we started educating the community about sickle cell disease. Finally in 1981, I founded the Sickle Cell Association of Ontario. Our first office was in Flemingdon Park. We had a good relationship with the Toronto District School Board and did a lot of work in the schools in the area, even used one of their portables as an office for a period of time. We were very busy; we did not spend one weekend at home. There were a lot of lodges at the time who would invite us to do presentations, we went to sickle cell conferences at Howard University in Washington D.C. and in 1982, the Ontario Sickle Cell Association held the first Sickle Cell Conference in Toronto.


What would you say is your greatest achievement?


I am happy that I have had an opportunity to serve my people and not only my people but people from all over the world, and when I serve them I try to do so with love, humility, and respect and I know that God loves me. I have faced a lot of challenges along the way. I have had a few big knocks. In some ways it seems I am a loner and at times I have lost my faith in people. In the challenges that I have faced, I know I have put my trust in God, and I believe in myself.


What will your legacy be?

It is necessary to have good hospitals, we need good doctors and nurses but let’s not forget we live in the community, with our families and community members. Our health care system must recognize the emotional, mental and social part that makes up our well-being. I hope I have made a contribution to that end.


I hope to live to see the day in which a child born with sickle cell disease doesn’t have to feel ashamed, that they will not be singled out or felt left out, but be confident and be treated as any other child. We must always remember I am my neighbour’s keeper.


Thank you so very much, Ms. Lillie.

The community is invited to celebrate Ms. Lillie Johnson with us at the Black Health Alliance Awards, immediately following the Black Health Alliance Annual General Meeting on Friday September 26, at TAIBU Community Health Centre, 27 Tapscott Road, Scarborough. This is a free event for the community.


For more information, go to or call 416-447-7600 to RSVP.


Dr. Christopher J. Morgan is the director of Morgan Chiropractic & Wellness, an interdisciplinary health centre in Toronto, and the Founder and Past President of the Black Health Alliance, a network of community organizations, health professionals and community members working in partnership to advance the health and well-being of the Black community.

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