Nearly half of Black women, girls and gender-diverse people in Canada have delayed or avoided seeking health care out of fear of racial discrimination, according to a new national survey that researchers say exposes widespread anti-Black racism within the health-care system.
The Black Women’s Institute for Health has released Voices Unheard: Healthcare Barriers and the Lived Experiences of Black Women in Canada.
They surveyed nearly 2,000 Black women, girls and gender diverse people across Canada, collecting both data and the personal stories of those experiencing anti-Black racism first hand.
“Anecdotally we knew that Black women were having a differential experience,” Kearie Daniel, executive director and Founder of The Black Women’s Institute for Health, said.
“The reality is that in our society, data … numbers are power.
“Data is how we change things.”
Daniel said that while most women do experience dismissal in the health-care system, “forBlack women there are layers on top of that.”
“We know women in general feel dismissed,” she said. “But two-thirds of Black women feel dismissed.”
“One of the things we heard so frequently were the assumptions that are made about Black women,” she said. “Like when you are in pain there’s this idea that you can tolerate more pain.”
The report documents six critical areas of healthcare disparities:
- Medical conditions that disproportionately affect Black women, girls, and gender non-conforming people
- Black maternal health and medical neglect
- Severe and unique mental health challenges
- Exposure to racial violence, abuse, and increased risk for post-traumatic stress disorder
- Burnout and emotional fatigue through toxic work environments
- Racial discrimination and Black girls’ and youth’s early experiences with racism and identity
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“We’ll compare ourselves to the U.S. and say, ‘We’re not as bad as them,’” Daniels said. “That’s not true.
“Racism doesn’t know a border. The experience is universal.”
Many of the concerns reported in the survey included women being told they were drug-seeking when they were in pain, or instances where child services had been called because of assumptions made about the parenting abilities of Black women.
Some of the more detailed stories involved women miscarrying in hospital waiting rooms, while others spoke about having a caesarean section where doctors forgot to provide freezing for the mother.
“Some of the stories are so horrific,” Daniels said. “When we gave them to our researcher team, we had to give it to them with supports.”
Researchers were given access to mental health supports as they combed through both the numbers, and the stories attached.
The survey also showed that mental health was the top chronic illness diagnosed among survey participants at 15.8 per cent.
Statistics Canada reports that four per cent of women, nationally, experience suicidal thoughts, while 27.4 per cent of Black women have contemplated self-harm — more than six times the national average.
Aaya Musuya was one of the women who took part in the survey.
“I recognize we always start at the back of the line with some many things,” she said. “I’ve lived it myself.”
Musuya has faced significant challenges in accessing care at local clinics and ERs, even during an emergency where she was forced to wait for 22 hours to see a doctor.
“I understand the cultural disparities sometimes that come with this very important area of our lives,” she added. “There’s a disconnect in accessing and fully utilizing the services.”
She moved from Uganda to Red Deer six years ago and said while she expected change, she didn’t expect the difficulties that came with navigating the Canadian health-care system.
“We’re integrating, settling in, figuring things out,” she said. “When it comes to the health-care system, it’s not just visiting a doctor, it’s working through a system.”
Musuya said that she has avoided going to the doctor’s office, and when she does seek help, she goes in overprepared for the appointment.
“I was worried whether they would understand, “she said. “I was worried about if they would just give me a bunch of drugs to cover up my symptoms.
“I feel like I walk in already plugging gaps versus just walking in and saying, ‘This is what’s wrong with me.’ When I had a doctor who looked like me, I felt a little more comfortable explaining because I felt they would understand where I was coming from and what issues might likely be causing what I was facing.”
The Voices Unheard survey was a chance to share her stories, while also helping to pave the way for a better future for her two daughters.
She said she’s teaching them now how to better advocate for their own health.
“It just feels like going to the doctor is so complicated.” she said. “It never seems easy.”
“Now that we have the data, the next step is action,” Daniels said.
“There’s no excuse anymore.”
The report makes 70 recommendations for various levels of government. It includes calls for anti-Black racism to be declared a public health emergency, and for a national Black health equity strategy.
Those behind the survey say addressing the barriers faced by Black women would not only save lives but strengthen Canada’s health-care system as a whole.
“What we know is that if we are looking at the experiences of those most impacted by oppression, if we’re fixing the system for them — we’re fixing the system for everybody,” Daniels said.
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