By Karen Flynn and Neil Armstrong
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| Photo contributed Lillie Johnson was invested with the Order of Ontario by Lieutenant Governor David Onley in 2011
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At 98 years old Lillie Johnson, founder of the Sickle Cell
Association of Ontario, is as committed to the cause as she was when she
started the organization in 1981.
In late December 2018 on a visit to the long-term care
facility in Toronto where she now resides, we (Karen Flynn, an associate professor in the
Department of Gender and Women’s Studies and the Department of African-American
Studies Program at the University of Illinois, Urbana-Champaign,
and I) found her actively participating in a group session. We were soon sitting
together in the dining room in conversation.
Johnson was born on March 16, 1922 in St. Ann, Jamaica and
after completing her education at Wolmer’s High School for Girls and at
Shortwood Teachers’ College she worked as a teacher in Jamaica.
She eventually left to study nursing in Edinburgh, Scotland,
December 1950 arriving in January 1951 and later travelled to England to pursue
midwifery training in 1955.
After completing her studies in Britain, Johnson returned to
Jamaica where she worked at the University College of the West Indies Hospital
in Kingston. From there she went to New Jersey in the United States in 1958 to
work at the Beth Israel Hospital in Newark.
Johnson travelled by train from New York, where she visited
family, to Canada in August 1960. Johnson has an impressive record whether in
her capacity as a public health nurse, administrator, or volunteer. From
1974–1981, for example, she served as a
nursing consultant for the Ontario Ministry of Health and eventually became the
first Black female director of nursing for the Leeds, Grenville, and Lanark
District Health Unit, where she worked from 1982–1988. During this time, Johnson advocated for
improved living conditions for Caribbean farm workers residing in the area.
Asked what she feels is her contribution to Canada, Johnson says
she is proud of her past record.
“I went out there knowing that no one thought much of anyone
with sickle cell. Now, at the end of my journey I am happy. First, not only for
myself but the others out there who didn’t know about sickle cell but now want
to know about sickle cell, now want to do anything for sickle cell.”
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| Photo credit: Eddie Grant Standing left to right at the 7th annual Viola Desmond Awards at Ryerson University in 2015 are Anisa Hassan, recipient of the Zanana Akande Award; Oluwatobi Taiwo, recipient of the Lillie Johnson Award; and Dr. Denise O'Nel Green, Assistant Vice President/Vice Provost Equity, Diversity and Inclusion (now Vice-President, Equity and Community Inclusion). Seated is Lillie Johnson |
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| Photo credit: Eddie Grant Some of the participants in the Jamaican Canadian Association's walkathon held in May 2012 are, left to right: Pauline Christian, President of the Black Business and Professional Association; Pat Howell of the Markham African Caribbean Association, Lillie Johnson of the Sickle Cell Association of Ontario, Totlyn Douglas, a member of the JCA, and Audrey Campbell, President of the JCA
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| Photo credit: Francine Buchner Lillie Johnson, founder of the Sickle Cell Association of Ontario is flanked by Margarett Best, Minister of Consumer Services, Government of Ontario, left, and Mary Anne Chambers, President of P.A.C.E. Canada at the Jamaica 50th book launch of "Jamaicans in Canada: When Ackee Meets Codfish" inside Miss Lou's Room at the Harbourfront Centre in Toronto in 2012
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Sickle cell disease is an inherited
(genetic) disease of the red blood cells that causes ongoing health problems.
Having founded the Sickle Cell Association of Ontario in
1981, Johnson noted that she “spent a great time as the president” and helped
them to attain what she set out to do, meaning, “No one should cry down people
with sickle cell. And for parents, guardians and everybody to come together and
know that people with sickle cell are like others out there.”
Yet, she still has concerns. “At the end of this journey I’m
a bit disappointed because although Humber College now has a program for sickle
cell, the College of Physicians and Surgeons of Ontario and medical doctors out
there they have yet to put it in their program for students. We have not made
sufficient steps at getting the College of Physicians and Surgeons to put in in
their program of training. And I feel although they will give us support the
final support is to open the door and let the doctors in. I would have loved to
be a little quicker before I got older in order to make one more effort to
bring the doctors in. It’s highly important.”
Johnson says she talked to many community groups about
sickle cell and while some supported the organization, others did not.
“We wanted help but they refused and away they went; they
went outside the community, “ she said, disappointed that their focus seems to
be on creating a program just for hospitals and hospital-care and not to to
work with families as she intended.
For her, this means listening to and supporting families
dealing with sickle cell. “You have to
make these people independent. It might take a little longer but in the long
run that’s what counts. I’m convinced and I know that that’s the way to go.”
Johnson believes that if care is provided that is not always
hospital-based this can result in more productive people.
She commended TAIBU Community Health Centre for the work
that it has been doing, especially in its research of health matters related to
people of colour.
The former nurse said it was sad that about 8% of parents
with children living with sickle cell are single mothers; the fathers were
absent.
These fathers are not there supporting mothers who are trying
to help their babies who have sickle cell, she said.
“Mothers have to pay attention to the fathers, don’t just do
the test and don’t tell them what it is. What they’re doing now is doing the
test but they don’t tell the mothers about the ones who are only carriers and
you have to tell them, and you have to support them, especially mothers, and
help them to cope with the situation.”
Johnson believes that siblings can pitch in to help a family
member with sickle cell and that there should be some programs to educate them.
Asked if she thought women who have full blown sickle cell
and want to have children was a good idea, Johnson said, “No, I never tell
whether it’s good or bad. It’s their decision.”
Her interest in sickle cell began when she realized that
neither doctors nor nurses had ever heard of it and people with families who
had it avoided talking about it.
She said having sickle cell also affected a person’s
immigration status.
“The one with sickle cell they would say alright, bring him
back every year and we will check and see if it’s alright. Many of them come to
immigration and the minute you say you have sickle cell they put a mark on you.”
In 2006, Ontario became the first
province in Canada to implement universal newborn screening for sickle cell
disease in Canada. Newborn screening in Nova
Scotia was announced on April 1, 2014.
“We trained them, that’s an African group there [in Nova
Scotia] but we stand for everybody. Ontario made it possible by making it a
test for all babies – white, red, yellow, black, anything,” said Johnson.
Johnson was happy to have received the Order of Ontario -- the province's highest honour – in 2011 for her work with
Sickle Cell Association of Ontario.
She noted that she was also a longtime member of the Jamaican Canadian
Association and was there from its early years.
“The first visit I was there and I stayed with them until
they really started to settle down, I would say.”
Johnson is cautioning health officials in Toronto “to
recognize what we are saying and what they should do because if they don’t do
that in the next 8-10 years even white people will have a problem.”
“There are so many of us who have the trait and don’t know
so we have to have community agencies that carry out classes and refer them.”
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| Lillie Johnson with Karen Flynn, Associate Professor in the Department of Gender and Women's Studies and the Department of African American Studies at the University of Illinois, Urbana-Champaign and author of "Moving Beyond Borders: A History of Black Canadian and Caribbean Women in the Diaspora" published by the University of Toronto Press |
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| Outside her room is a showcase of some of Lillie Johnson's photos and a copy of her memoir "My Dream" launched on March 15, 2015 at the Jamaican Canadian Association |
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| Karen and I hanging out with Lillie Johnson at her home at Extendicare Rouge Valley in Scarborough, Ontario |
So, how does Johnson feel about her life journey?
“It makes me feel, on the whole, when I hear and see how
many people have come to congratulate us, I feel happy. It was worth the effort
and stay.
“I didn’t go in to say you do that. No, it’s what I am
saying and it should not be so – it should be what you are saying. And I can
say we have increased the number of people who know and we have to reduce the
number that do not know.”
Using her family as a good example, Johnson said it was only
recently that relatives told her who has the trait.
Johnson says she is happy at Extendicare Rouge Valley in
Scarborough that presented her with an award recently -- a recognition fitting
as we celebrate International Year of
the Nurse and the Midwife.
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