My latest essay for 'Alphabet of Other', a collection of essays tackling the specific prejudices and unique experiences faced by people of colour from my experiences as a biracial, East Asian woman. It explores what it feels like to be a minority or biracial person who often ticks 'other' than black or white. 'Othering' is a term that not only refers to racism (but ofcourse includes it) but bias, xenophobia, stereotypes, micro-aggressions, propaganda and anything otherwise considered innocuous that is actually extremely harmful and just shy of full-blown hate. The difference with 'othering' is that, unlike racism, it is perpetuated by and between people of colour too.
'H is for Health Disparities'
Halloween is not the scariest factor of October for minorities and people of colour. The month encompasses Breast Cancer Awareness Month and Mental Health Awareness Day as well and for us, these occasions have their own haunting connotations. As if cancer and mental illness weren't already overwhelming and scary topics.
Here is a real life horror story*: When Susan Shinagawa found a pea-sized lump in her right breast, her doctor refused to diagnose her with cancer because, she recalled him saying, “Asian women don’t get breast cancer.” A second doctor told her, without performing a biopsy, that he could say with “99.9 percent certainty” that she did not have breast cancer. When one [doctor finally] acquiesced, the results showed that she did in fact have cancer.
That was in the late 90s. In 1998 Shinagawa co-founded the Asian and Pacific Islander National Cancer Survivors Network, a group that provides referrals to cancer support and survivorship services. But at a recent public health panel, an Asian American breast cancer survivor told Shinagawa that her doctor also prematurely ruled out a breast cancer diagnosis because of her race. “It flabbergasted me that 30 years later doctors are still saying the same thing,” Shinagawa, now 65, said. “It made me wonder, ‘Was it a waste of time that I did all this work?’”
"How can we treat people of colour across the world with a one size fits all everywhere approach?"
Stories like this are unnerving, frustrating, bewildering, haunting and downright horrifying. But they are by no means a minority themselves. Reluctance to diagnose a woman with breast cancer due to racial bias results in a delay in action for testing and treatment. This results in cancers that are further advanced and lower survival rates. True story: healthcare disparities between people of colour are literally costing lives.
UNDERSTANDING UNDER-REPRESENTATION
According to the National Cancer Institute "Black women continue to have the lowest survival rate of any racial or ethnic group." The picture becomes grimmer when we compare the five year survival rate of a black woman and a white woman with breast cancer : 81 to 92 percent. The same systemic racism, individual bias among health practitioners, and aggregated data "perpetuates cancer disparities among Asian Americans, who are the first racial group to experience cancer as the leading cause of death" according to the Centers for Disease Control and Prevention.
"The very people entrusted to care for everyone are unable to do it equitably"
Okay, what is aggregated data? It's when different data sources are combined to draw an inference that is actually ecological fallacy (fallacies assume what is true for a population is true for the individual members of that population). In Shinagawa's case the doctors were motivated by data stating that breast cancer is 11% likely among Asian and Pacific Islander people. Stats like this fail to recognise a few factors:
This number applies to people of these ethnicities living in North America exclusively (disregarding location and the impact that environment has to play in health)
The difference between what 'Asian' means (besides being a catch all phrase for a huge continent of different ethnicities, North American studies tend to group 'Asian' people with Pacific Islanders even though they are not remotely related culturally or geologically)
Individual lifestyle factors
People of mixed heritage
Even if these stats weren't heavily incomplete and skewed, the same study shows a marginal difference in breast cancer rates for black and white women (increasing likelihood by 1% ; 12 and 13%). It doesn't take a degree to tell that that's not enough to rule out breast cancer completely.
Another factor in terms of medical studies that affect people of colour is a lack of representation entirely. "Black people and other minorities remain underrepresented in clinical trials on the treatment of breast cancer and many other cancers," states a 2021 study by researchers at Harvard. They found that white people made up 82% of participants in 93 studies, while black people accounted for 10% and other minorities only 8%.
Whaaaaaaaaat.
Despite Asian Americans being the 'fastest growing racial group in the US' for example, this 7% slice of the country's population pie only constitutes 2% of people in clinical cancer trials. Really.
Here in SA, we lack such in-depth stats on minority healthcare quality but with Coloured people being 8.8% and Indian/Asian peoples being grouped, making up 2.5% we see that the picture is likely similar. Even though white people make up a minority (7.8%) here our history means that they have been favoured not only economically but in healthcare, too. The South African Medical Journal states factually that “Apartheid policies focused economic and health advances to white people in the first 80 years of the 20th century”. Further: “About 73% of white individuals are members of a medical scheme, 52% of Asian individuals and only 10% of black Africans, indicating a clear racial disparity in private coverage.”
Our health practitioners as a result often rely on American and European studies. We have to ask how we've come to a place in healthcare where we expect to treat people of colour across the world with a one size fits all everywhere approach that lacks sufficient representation at its basis.
A MENTAL NOTE
Physical health aside, what does it all mean for the mental health of people of colour at large? The picture stays pretty much the same. A 1999 report on mental health, titled “Mental Health: Culture, Race, and Ethnicity” found that people of colour "had less access to mental health services, were less likely to receive those services when needed, often received poorer quality of care and were underrepresented in mental health research". And much like Shinagawa found, not much has changed since then. Observe:
Even though rates of mental illness in African Americans are similar to the rest of the population, they receive poorer quality care and experience lack of access to culturally competent care.
African Americans are less likely to be offered either evidence-based medication therapy or psychotherapy.
African Americans are more likely to receive more 'unpleasant' and outdated treatments than white patients.
What does poorer quality of care mean? It means caregivers are "less likely to deliver effective treatments to people of colour when compared to their white counterparts". This fact has been compounded by multiple studies which outline that people of colour are less likely to receive equally effective pain relief, more likely to be treated with less effective methods, and be diagnosed later.
"We can begin ending this nightmare by demanding better"
Some would blame it on socioeconomic factors. A study of South Asian people showed that this group, "face many barriers, including language barriers, lack of culturally safe care through providers and agencies that cater to specific religious and cultural needs, lack of integration between services and agencies, transportation issues, as well as the lack of awareness and presence of stigma regarding mental health in the community." While this is not new news to people of colour and no doubt do affect the healthcare received, what about when most of these factors are 'controlled' (consistent across participants?) You guessed it: A 2005 report released by the National Academy of Medicine (NAM) stated that people of colour receive lower-quality health care than white people "even when insurance status, income, age, and severity of conditions are comparable.”
BIAS TO BLAME
It seems insidious to think that the very people entrusted to care for everyone are unable to do it equitably. But isn't it idealistic to expect that our caregivers are not just as biased by prejudice as the average Joe? Dayna Bowen Matthew's book, Just Medicine: A Cure for Racial Inequality in American Healthcare, investigated this and here's what she found: "physicians, like the rest of the [public], have implicit biases. They have views about racial minorities of which they are not consciously aware—views that lead them to make unintentional, and ultimately harmful, judgments about people of colour."
So how can we ensure the equality of the Hippocratic Oath? While we can't change the socio economic and entrenched racist structures of our societies overnight, we can take control of our individual healthcare. We can begin ending this nightmare by demanding better. Here's how to start:
Speak up if you feel unheard or if you find an issue with your treatment, sometimes caregivers aren't aware of their biases (which aren't purposeful all the time, and hopefully corrected when raised)
Ask for all of your treatment options if you are not happy with what is suggested
Always get a second opinion if you don't feel heard or taken seriously by your caregiver
If you are uncomfortable with a caregiver at a facility, ask for a replacement
Change caregivers if you feel that yours brushes you off or is uninterested
Report public health workers who show prejudice to the Health Professionals Council of South Africa : https://www.hpcsa.co.za/?contentId=0&menuSubId=19&actionName=Legal%20and%20Regulatory%20Affairs
Report private healthcare providers to the Office of the Health Ombud: https://healthombud.org.za/
*As told to NBC