Serena Thompson, vice-president of the Sickle Cell Association of Ontario, lives with sickle cell disease, a genetic condition that affects the shape and function of a person’s red blood cells, making them more prone to blockages in the bloodstream. When a blockage – referred to as a “crisis” – occurs, it creates severe pain around the affected part of the bloodstream.
Thompson gets most of her crises early in the morning. When she does, she calls the ambulance and then goes into a routine of changing out of her head-wrap, T-shirt and jogging pants and brushing her hair, all while still in pain. If she doesn’t, “I would notice that we don’t get treated right. They wouldn’t give us the right medication, or the right dosage, because they think we’re going to get addicted.”
The tendency to see sickle cell patients as seeking drugs is a symptom of the larger problem of systemic racism in Canadian healthcare. Thompson says many Black Canadians are conditioned from birth to hide a certain amount of their pain. “We’re conditioned culturally not to scream, or cry, or to – essentially make a fool of ourselves, [so] when I say my pain is a 10, they look at us like: ‘Oh, you don’t look like you’re at a 10’.”
Sickle cell disease is one of the many medical conditions that disproportionately affect Black people. According to the Centers for Disease Control, one in every 13 African-American children is born with the sickle cell trait, the precursor to sickle cell disease. That data has not been compiled for African-Canadians.
When her pain is bad enough to warrant a hospital visit, Thompson’s usual dose is 10 milligrams of morphine. While morphine has the potential to be addictive, it is still frequently used for acute onset pain. Thompson points out: “If somebody else is in pain and broke their foot and all, they would give them morphine right away.”
Members of Black communities across Canada are overrepresented in a number of other medical conditions, including cancer, kidney disease, hypertension, HIV and AIDS, diabetes, psychosis and mental illness. As Dr. Christopher Morgan, founder of the Black Health Alliance, puts it: “Broadly speaking, if we had to give a grade to the health and wellbeing of the Black community, it’s a failing grade.”
In issues of mental health in particular, Morgan says many Black Canadians struggle to access available services until mental conditions have significantly progressed. “Whereas people outside of the Black community with similar conditions have typical access points to mental health services within 3-6 months. In the case of Black folk, it’s often 16-18 months and it’s often through police incarceration.”
In light of the challenges exacerbated by COVID-19 and the wave of social movements in response to the killing of Black people by police officers, the Toronto Board of Health June 1 voted to recognize anti-Black racism as a public health crisis, calling for policy support of Toronto’s racialized communities and asking Chief Medical Officer Dr. Eileen de Villa to reprioritize addressing anti-Black racism.
Part of what needs to be addressed is the ongoing climate of prejudice in Canada. In a letter penned by the Executive Director at TAIBU Community Health Centre, Liben Gebremikael described the phenomenon as follows:
“Biological determinants are insufficient to explain these (health) disparities. They result from long-standing systems of oppression and bias which have subjected people of colour to discrimination in the healthcare setting, decreased access to medical care and healthy food, unsafe working conditions, mass incarceration, exposure to pollution and noise and the toxic effects of stress.”
“We’re not so much talking about the kind of racism you think of: the kind of racism where someone does something to another person,” says Dr. Onyenyechukwu Nnorom, Associate Program Director of the Public Health and Preventive Medicine Residency Program at the University of Toronto. Instead, it is the systems, policies and practices that reinforce anti-Black racism in Canadian institutions that must be addressed.
“When we learn about disparities,” says Nnorom, “the rhetoric has been to blame the affected community; that it’s Black culture, or genetics, or some other explanation that is inherent to the Black population, without any acknowledgement of a system that has and continues to dismiss Black communities.”
One way that manifests is a lack of upward mobility for Black people in the healthcare industry. In that same letter, Gebremikael pointed out a lack of Black representation on the Toronto Board of Health, something that would likely have expedited the call for healthcare reform.
This is in part due to barriers to education imposed on Black communities. Education is not the only determinant of upward mobility, however. A 2015 report by the National Asset Scorecard and Communities of Colour in the U.S. found that even with higher education, Black graduates still earn less than their white counterparts and accumulate less wealth.
Nnorom says living in a community where that lack of upward mobility was apparent is part of what inspired her to get into public health. “I saw the hopelessness that it creates. There is an influence on young Black boys who are going to make decisions on whether or not to stay in school.”
With that added stress comes additional negative health outcomes. According to a study by UCLA, the effects of racism as a chronic stressor can weaken people’s immune systems, making them more susceptible to infection. Said co-author Steve Cole in an interview with Science Daily: “We’ve seen this before in chronic loneliness, poverty, PTSD and other types of adversity but until now, nobody had looked at the effects of discrimination.”
As John Douglas Belshaw points out in Canadian History: Pre-Confederation, there is a longstanding historical precedent for the mistreatment of Black people in healthcare. Scientific racism began in the enlightenment era, in part to justify the colonial expansion of the Second British Empire. In Seven Fallen Feathers, Racism, Death, and Hard Truths in a Northern City, Tanya Talaga shows that the belief in a scientific hierarchy between races echoes through Canada’s continued subjugation of the Indigenous population.
Perhaps most obvious is the 19th century belief that people of colour do not feel pain the same way as white people, directly mirrored in the TikTok videos of practicing nurses. Danyelle Rose’s video, depicting a caricature of a patient “faking” pain, was met with anger from members of Black communities.
“What a hateful, specifically racist sentiment to communicate. One that should frankly disqualify you from healthcare work,” reads one tweet by Rewire. News culture writer Kieran Scarlett.
Added Toronto Star contributor and writer on indigenous issues Joy Henderson in that same thread: “I had several white doctors/nurses think I was faking some serious ‘mofo’ pain, because they assumed I wanted drugs. Turns out I had an ovarian cyst burst. Not a giant emergency, but easily pain worse than childbirth (I have three kids).”
According to a 2016 study of medical students, 12 per cent of those surveyed said Black people had less sensitive nerve endings than white people and 58 per cent said they believed the enlightenment era myth that Black people have thicker skin than white people. Overall, roughly 50 per cent held false beliefs about the way Black people experience pain. This belief has been used as recently as the mid-2000s to justify the experimental treatment of racialized people in North America.
The Ontario Human Rights Commission’s Racial inequality in access to health care services includes a U.S. study on how physicians managed chest pain that found that “Black people, women, and the poor [were] less likely to receive inexpensive and proven therapies for treatment of acute myocardial infarction than other patients” and instead were pushed toward experimental treatments.
Thompson has experienced this phenomenon first-hand. During a sickle cell crisis, she was offered a new medication by one of her nurses. If she wasn’t as active in the sickle cell community, she would not have known that the medication had induced organ failure in another Black sickle cell patient, putting him in a coma weeks before. “Now,” Thompson says of the other patient, “when he has a crisis, he doesn’t want to go to the hospital.”
These issues persist not because of the actions of individuals but rather the inaction of stakeholders. “When there isn’t an effort to address them, so that they are sustained, that is what anti-Black racism is,” Nnorom says. “It’s what’s happening at the system level.”
The start of a solution, according to Nnorom, is self-education. “If a person is completely unfamiliar with anti-Black racism, then they need to start with educating themselves,” she says. “Understanding what that is, the history of medicine and pathologizing Black people. What can help is having the self-awareness to move towards structural change and policy changes. Systemic racism is the disease, the way an individual behaves is a symptom of the disease.”
Morgan says race-based data collection is needed, something the Canadian healthcare system is not set up for. “We live in an evidence-informed society and in some ways not having the data is an excuse to deny that a problem exists. We know that it exists and getting the data is one of the ways to control the scale. One size definitely does not fit all. In many cases there is a need to bring about services that target the Black community.”
While there is a push to implement race-based data collection because of COVID-19, Morgan says this is something that needs to be integrated into Canada’s healthcare system. “Many people in Black health leadership have been advocating for it but we need that to be standardized, mandated and system-wide beyond the COVID-19 pandemic so that we can better identify the gaps.”
Nnorom has some concerns, however. Race-based data in other fields has been used historically to stigmatize racialized communities in Canada. Indigenous communities especially are overpoliced with data on drug use used as justification, all without addressing the systemic causes of drug use.
If the Canadian government is to go forward with race-based data collection, Nnorom says “it’s important to have representatives from the Black community at the decision table. So that the way data is interpreted and collected is either shared with Black leadership or owned by Black leadership.”
Another manifestation of the denial of Black experiences is the lack of culturally appropriate healthcare settings. This was something the Black Health Alliance had been advocating for since its inception, coming to fruition with the TAIBU Community Health Centre. According to Morgan, seeing a doctor of the same race helps ease some of the historical tension between Black communities and the medical system. “There’s a level of familiarity and trust when folks can engage with health and social service providers that share some cultural background and understanding.”
This trust is indispensable when addressing sensitive concerns in Black communities, especially mental health and the stigma surrounding it. “There is misunderstanding and denial about whether or not that’s a real problem in the Black community,” says Morgan, “With the insufficient knowledge and education on mental health, then that also becomes a challenge and a barrier in terms of taking care of ourselves, seeking care, or doing things that are preventative.”
Part of the education burden lies outside Black communities. Sickle cell disease and other conditions that predominantly affect Black Canadians are not well known across the medical community. “When the ambulance comes,” says Thompson, “they don’t know what to do with me. I need to explain to them that I need oxygen, I need fluids and I need medication.”
Of the 27 post-secondary institutions in Ontario that provide practical nursing programs, Thompson says only Humber College has accepted the guidance of the Sickle Cell Association of Ontario.
“This was an important conversation to have 100 years ago,” says Nnorom, “It has been recognized as an important conversation because we are in a pandemic. The world is in a different context where we can pause, give this attention and really be emotionally devastated by seeing […] a glimpse into how Black people have been treated.”
“I myself am hopeful,” says Morgan “There’s been a recent growing awareness and understanding around the challenges that are faced by Black folks, not only in terms of healthcare. It’s an opportunity for some honest, open and candid discussions about what we need. A rethinking of our policies, an understanding of the historical power imbalances and how all of our institutions are set up to keep certain populations in power.
“If we want the same humane and just society we aspire to, then these are the tough discussions and transformations that are going to be required to do so.”