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.”
Black Lives Matter protest in Toronto, Ontario. June 19. https://www.thestar.com/news/gta/2020/06/19/we-demand-better-we-demand-our-lives-black-lives-matter-toronto-protesters-call-for-defudning-of-police.html
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.
Tweet depicting patients faking pain. https://twitter.com/damndrosetweets/status/1196804341753139200?lang=en
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.”
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I am a Caribbean Black Woman who was diagnosed with an Immuno Compromised System, Allergies to Ragweed, Pollen, some trees and plastic (to the point that the Doctors at Sick Kids commented your the first patient diagnosed with an allergy to Plastic. Also developed infections easily. Upon Discharge from Hospital my parents were given strict rules to follow in terms of management with lactose intolerance and infection development. I also had congenital spinal stenosis and heart issues. We were told that I could never get implants of any kind including Orthopaedic and Gynecologic. Should I ever need a pacemaker later on in life that they would have to do rigorous hematology monitoring in case infection develops with implant. My parents were told that they had to make sure all Doctors I see must be told of my health history. Sick Kids Docs made sure all my health information was entered in the Hospital Database so that it could be viewed by any Ontario hospital in case I goto the ER it also lists my allergies. I also face extreme forms of discrimination from white and east indian, middle eastern Docs. Though I will be honest and say I had some pretty darn good Doctors who took their hypocratic oath seriously and they were white. My Family Doctor of 35 yrs retired warned me about the new breed of Doctors coming out of medical school and told me they are very Racist and frequently use the N word like you brush your teeth everyday. Or this ignoramous assessment from a Doctor: I explained to Doctor that I am at risk for developing infection and Im having stomach problems and informed him the ER Doctor said my Kidney is swollen at the tip and that I need to see my Family Doctor, again no further treatment at ER. Er Doctor proceeds to tell me to watch out for watery stool and flank pain and that if it’s not taken care of my Sepsis can come back a condition called Nephrosis and if left untreated you can develop Sepsis. I am in the process of contemplating applying for End of Life because since I am just an depressed, anxiety ridden black woman what sense does it make to even live. I cannot fight this good fight anymore. these doctors think all black people eat is fried and spicy food and trying to suggest that i cut down the spices in the food and i am like what fucking spices are you talking about, I dont eat spicy food just because I am black. Just because I am caribbean doesnt mean we eat oxtail, curry every day. Im tired with these White and East Indian Doctors telling me to cut down the spice, you idiot I dont use alot of spice any way because I have gastic issues as well. I am prepared to die with my kidneys being left untreated. I was left with Severe Sepsis to die in Ontario and we just arrived home from the USA 2019 from mesh removal. American Surgeon told me I had one more to live because I would of passed away in my sleep from Septic Shock and my heart would of stopped beating in my sleep. American Surgeon says I am at risk for Sepsis always coming back and I need to see a Hematologist and I cant get one to see me. Sepsis has three stages: Stage 1-Sepsis, Stage 2: Severe Sepsis 3- Septic Shock Death. I am being left to die and cant find a hospital to help with end of life. 35 000.00 cost for mesh removal and im in such desperate need for follow up care but because I didnt return back to the Ontario Surgeon my name is black listed from receiving medical help. I told the Ontario Surgeon about my health history and explained I develop infections easily, explained all my allergies especially to Polypropylene and Plastic. Mesh is made from Polypropylene its plastic. I never agreed to have mesh and between me and my creator I know the TRUTH and what was discussed and I totally thought I was having another surgery. Which person in their right mind would consent to an implant knowing their fully allergic to the material, logically that makes Zero sense because your putting your life at risk. The Worst thing is that all my medical information and allergies are listed in the Hospital Database and is there to see how the hell did I end up with a piece of plastic inside of me that started to rot immediately. I have had an Urologist give me pain medicine that is known to cause damage to the kidney’s causing them to bleed because I would return to the initial first surgeon, when I tried to explain why he quoted” your crazy and a problem maker we dont like people like you, im not treating you and the medication will make your kidneys blled , he then threw the prescription on the floor and my husband picked it up and left both of us were crying. My pharmacist had me on the phone for 45 minutes asking why the Specialist wrote me a prescription to damage my kidneys and I have kidney stones. Pharmacist said I dont understand why? you shouldnt be taking this medication at all, plus Doctors dont use this medicine anymore. My husband wanted to deck him. He said he had no right to talk to you like that and i thought he would help you. As soon as they enter my name in the hospital database their demeanour and body language changes. They never want to hear about my recent mesh removal surgery that has become a part of my permanent health. I drink two gallons a water every day because I am afraid of dieing of Sepsis. Assisted Dying is the next step but finding the hospital to carry out the procedure is a problem. Hey I have also accepted if die from Sepsis than oh well. one less black lab rat used ( just like they always have used black people for medical experiments) Tuskegee Experiment and Hysterectomy Surgery was performed on Black Women first while they were awake in America and perfected for the rest of the world..SAY NO TO ALL MESH BLADDER AND HERNIA. BLACK PEOPLE ARE ALWAYS MEDICALLY GASLIT and if you go against the broader medical community you will suffer DEATH
i had two C-section at Woman College and Scrabrough General in Toronto Ontario Canada. I think i was given less drugs. i felt them cutting me open, and when u told them they wanted to say it was in my head. I still have flashbacks. Another instance i had a biopsy done at Scarborough General hospital with them knowing there was nothing in my breast. The Excruciating pain i went through, i could never look are touch that area for months.Thank God the Manfriend help we through the months of Mental Anguish.i still have flashbacks.
Nurses do not give the wrong medications or the wrong dosages. They are bound by a Code of Ethics.
These issues were a concern back in the 1980’s and 1990’s. My daughter died at the of 17 at HSC due to a medical error as the inquest that was done came back as an accidental death. HSC did issue me a letter admitting that it was medical error on their part. Back then most of the nurses did not know or understood was Sickle Cell was. Also some of the emergency doctors and surgeons had no idea of the seriousness of this disease. There was also a lack of communication from all levels at the hospital. I was back in the time of Dr Nancy Olivieri the Hematologist. In that inquest there were 31 recommendations which some of them were implemented at the hospital. There were also some changes made at the university and colleges for nurses students in regards to Sickle Cell. It has a been a long journey but maybe I can connect with others and share my story. My daughter name is Sanchia Bulgin. Blessings to all.
Yes I know. It is the same for women who are older. At least, for some women. I suspect people – women – who are well-placed in the community get better treatment. I believe cultural values play a part in this, as one of the first family doctors who really treated me badly was from southeast Asia. He was just starting out in his practice and I thought that in time his attitude would improve. He knew I lived on my own, and had no husband, and of course, was an older woman. In some countries, the caste system and historical practices such as suttee were used on older women when their husband died, so they died with them on the funeral pyre. What ever his problem, and I suspect it was discrimination on the grounds of age and gender, in time things came to a head. He ended up treating me very badly – as though I was going to abuse the Tylenol 2 (with codeine) that I he was allowing me (originally Tylenol 3 at the beginning of the approximately 2 years he was my gp.). He was determine I was going to get a sample tested every month if I wanted to keep taking Tylenol 2. I decided that would be a bad idea because the jar he gave me to provide a sample in didn’t even have my name on it, and I didn’t want to take the risk of it getting mixed up with someone who actually was a drug addict. I took the case to HRTO but they were so protective of him, and playing mind games with me, and I was so unfamiliar with the way the adjudicatr would behave at the hearing that I gave away any control I had of the situation and he walked away scot free, practically. Meanwhile, a specialist he had referred me to became the next abusive brown doctor, along with his staff, who had presumably known about the previous situation with the family doctor. He was even worse, and even though I had proof that he had discriminated against me, the HRTO let him off, after doing everything they possibly could to stop me.
I suggest that this idea of “systemic racism” be changed to “systemic discrimination on the grounds of race”. It sounds less aggressive and personal. Saying “systemic sexism” doesn’t work. But the r-words – racism and the other one – are so confrontational at this time. Thank you for the opportunity to tell you another side to this story.
I too suffered from systemic racism and medical bias in a Canadian hospital. I was neglected so bad and left in agony so long I had prepared to die at home. I was ill treated twice by the medical system. Now do you think I ever want to seek care again at a hospital no. I would rather take my chances. I’m indigenous