To the women who contributed to making this article happen, I warmly thank you from the bottom of my heart. I learned more from this experience than I could have imagined. My eyes are open wider than ever before and I vow to do everything I can to right the wrongs. I stand with you and I hope this article makes you proud.
As you may or may not have read in one of my previous articles, How Complacency Almost Cost Me My Life, I learned very early on in my cancer journey that self-advocacy and a healthy dose of assertion are the best ways to get out of the healthcare system as unscathed as possible. My experience in the system has had it’s shining moments of real compassion, empathy and camaraderie. After months of careful speculation, I came to believe that people who work in cancer care are a unique combination of the divine and the awakened.
Let’s define what awakened means to me. It means the acute, conscious awareness that ones own reality is not THE reality of the world. It means understanding ones own experience is but one of 7.8 billion experiences and therefore, nothing of ones own reality should dictate what is socially, morally, ethically, humanely right. It means that an individual chooses to step out of their own reality to experience the world from someone elses purview. And therefore, they are capable of seeing – beyond that, feeling the inequities that exist among each other.
This is not an easy task to accomplish. It’s not like an alarm goes off and all of a sudden you are aware to what is happening around you. It is a process to get out of your own head, and everyone is in a different place throughout this process. And the process is specific to everyones personal life experience and personal development.
As I’ve previously written about, something that happened to me almost immediately after being diagnosed with leukemia was losing the ability to shield myself from the energy of others. While this was a welcomed change in the presence of empaths, it was psychologically and emotionally excruciating when faced with negativity, hatred or cruelty. So, when I was faced with a highly racist incident in my own community, it affected me deeply, and then forced me to start thinking about injustice on a bigger scale – not only from the perspective of a patient in healthcare but of those in any marginalized group. During a rant with a friend sometime after that incident occurred, I recall saying something to the effect of, ‘I wish everyone could just be as good to each other as people are in cancer care’.
I mean, if my personal experience, and what I witnessed first hand in the hospital during my 22 day stay and proceeding 96 visits over a 5 month period was any indication of what the cancer experience is like in general, all we would have to do is hire oncology nurses and cancer survivors/caregivers to teach the rest of the world how it’s done. Right?
I know what you’re thinking; ‘Slow your role Michelle’. Yes, there are a plethora of assumptions made in the lightening speed at which that thought breached my vocal cords. No doubt about it. However, I also openly admit that one of my biggest challenges in life is asking more questions and making less assumptions. So, in honor of my ongoing pursuit of authenticity, I did what my psychotherapist (who I pay a lot of money) and my best friend repeatedly suggests (for free); I decided to be more curious – ask questions.
It immediately occurred to me that as a White person, no matter how intuitive I am, my perception of the reality of others is not only irrelevant but possibly quite ignorant too, so I went in search of those who could provide me with their own view points.
One of the first things I observed after making the decision to ask hard questions was, I didn’t have enough People of Color (who had experienced a cancer diagnosis personally or of a loved one) in my connections to get even an inkling of an idea of their experience. Not only that, but I didn’t even have an immediately good idea how to find People of Color on social media as I didn’t follow many groups rich in diversity. This, in and of itself was curious. This could be, not only an indication that I still have a long way to go on the spectrum of ‘wokeness’, but could also be a strong indicator that Black, Indigenous and People of Color are not comfortable with or solicited to for the types of groups I was part of.
After a couple of weeks of sleuth work, I came upon a number of groups which have gone on to shape my understanding of racism and anti-black awareness and allyship. This is a story for another day though. I started reaching out to these groups on social media. At a very high level, my ask was for anyone who identifies as a person of color who experienced a cancer diagnosis to reach out to me if they were willing to answer a few questions. I was totally unprepared for the responses I received, and especially the answers I didn’t receive. In my ignorance, I believed that people would be as eager to share their experience as I am. It didn’t occur to me right away that this would be a complex investigation that may be triggering and painful to people for a number of reasons. Let’s start by exploring what that might look like for some people:
- SHAME – There are some places in the world that don’t have a great understanding of cancer, at least not in the general public, and therefore it insights fear in others (as you will read about a little later in this article). While cancer patients endure a significant amount of self-doubt and even self-loathing, there are those who also deal with public ridicule as a result of poor lack of understanding. There is also the issue of body image and self-confidence that may play into feeling shame as a result of illness (and maybe for other reasons too).
- FEAR – There are some people who go through entire cancer treatment & recovery, in some cases ongoing treatment for chronic cancers or pre-cancers who don’t tell anyone at all. There could be several reasons for this – women who are caretakers and don’t want to burden their families. Men who are breadwinners and don’t want to ‘fail’ their families. Men and women who are afraid for their livelihoods because they may be perceived as ‘damaged goods’ or ‘high risk’ employees. God forbid you are an American citizen without health insurance…
- RACE – This is the one I didn’t anticipate being an issue. Quite simply, I had no idea what it means to be, say, Black in the medical system. Furthermore, as someone who represents the oppressor to some, I am basically the last person Black people would consider rehashing painful memories for. Six years ago, that might have made me feel defensive and angry. Today, it makes me feel sorrow. How terribly tragic that I can not be trusted because I’m White.
All that said, I did manage to find a group of 16 women who were willing to talk to me. I’ve broken this article down into a few different sections; initial observations, what’s really happening in healthcare, what’s next. Here we go!
While the inquiry was open to various cancer groups consisting of men and women of many backgrounds, only women responded. It’s also worth mentioning here that some of the immediate responses I got were alarming. Some of the respondents provided me with information and sources to papers that talk about all kind of healthcare disparities which I was completely unaware of. In fact, I had a hard time digesting some of what they shared. Did you know that Black women in the United States are 3 times more likely to die in child birth than White women? Seems unbelievable right? I was shocked and horrified to learn this too. I immediately needed to understand how this could be. Click here to read more about disparities in pregnancy related deaths.
For the purposes of understanding each of the respondents personal circumstance, I asked the them where they were treated, what their diagnosis was, how long ago they were diagnosed, how they are doing, age and how they identify culturally. From this line of questioning, I found it very interesting to note that those who I would have referred to as ‘black’, culturally identified in several ways; African American, Black, Nigerian (or the specific country they or their family is from). Likewise, those who I would have referred to as ‘Hispanic’, culturally identified in several ways; Latina, Latinx, Hispanic (or the specific country they or their family is from). This might not seem like a big deal but it is in fact, a HUGE deal. Since the beginning of June when the Black Lives Matter uprising began, I noticed a lot of bickering about how to refer to People of Color. The opinion of one person to the next can be different and in response, those of us who are trying to act as allies found ourselves confused. It’s like standing at a nine way street and being directed to go left.
I understand the intense emotions of so many humans during this time. Not specifically what people are feeling; just that the emotions are intense. And when people operate with heightened emotions things like mixed, misleading or vague messages can occur. There are a couple of extremely important lessons to be learned from this:
- The emotions are well justified and if we are looking to provide true allyship, that means sitting with our fellow humans in their pain. It also means, being aware that we all do it – we all get angry, sad, anxious, afraid and react with intense emotions sometimes. Some of us are lucky enough not to be triggered by racism and that simply doesn’t require us to defend ourselves. Likewise, when someone has been forced to endure racism their whole lives, and their ancestors before them for generations, they have a right to feel these things. They aren’t just angry people, they are abused people expressing themselves.
- In addition to this, if your intent is to move humanity forward in the name of equality, something else that we should all be aware of is, our brains are wired to dehumanize others. Marcia, a woman in Toronto who was the caregiver for her Mom who unfortunately lost her battle with endometrial cancer, shared her views on the dehumanizing of the Black community. She said, ‘In order to treat humans equally and with love, respect and compassion you first have to think of them as Humans’. Even those who are capable of great levels of empathy may experience empathy biases. It’s how wars start. In fact, its actually two completely different neurological processes that dehumanize and dislike. Click here and here to learn more about this. Understanding this as a factual part of human existence provides us with a healthy starting point to counter the process of dehumanizing. Not only that but provides a strong foundation for understanding overt racism compared to covert racism. Many of us call ourselves non-racists because we don’t dislike or hate anyone. However, the simple fact that we may be dehumanizing a group of people simply because they don’t meet our criteria of importance is the most insidious type of racism. It means that we can easily view human lives as valueless; subhuman. This is an opportunity; to explore how we view human life.
Another key observation among respondents is, only three of sixteen respondents told me they felt discriminated against in the cancer care environment. A fourth respondent reported they didn’t feel discriminated against but later told stories of what can only be described as discrimination. Of those four respondents, one was treated in Israel and the other three were treated in American cities and towns with populations ≤ 200,000 people. Interestingly, all respondents from Canada or the US who were treated in cities with populations > 200,000 did not feel discriminated against in the hospital. Unfortunately, the subset of responses is too small a number to make any broad determinations. However, it is suspect and upon researching the racial climate of those smaller cities/towns, it was clear that white supremacy is alive and well in each. Click here and here for recent examples of racist incidents in a couple of those towns. This is not to say that racism doesn’t occur in large cities. However, I would wager a hefty bet that big city racism happens more frequently as covert racism.
Most disappointing among those three cities/towns was New Brunswick, New Jersey. New Brunswick, NJ is only made up of 22% White people. So, finding an example of such disgraceful white behaviour there is particularly triggering. Click here to watch the video (viewer discretion is advised). Maybe most disheartening and disappointing is all of the other (White) people who stood there and let that happen. While my heart also goes out to all of my friends named Karen, this video exemplifies exactly why ‘Karen’ has become the identity of entitled, often racist white women. If we, as White women, want to reclaim our names, such incidents must stop. We must rise to this occasion and hold each other accountable for our behaviour. To be clear, not only our own but that of others as well.
Another observation I made from the respondents is that some of them believed the reason they were treated well is because they actively educated themselves on their conditions, were active participants in their own care or had strong support systems who advocated on their behalf. It’s very important to note that some of those who believe they were discriminated against AND some of those who believe they weren’t discriminated against said that the relationships with their care providers was less than ideal until they began asserting themselves. This is particularly alarming for a couple of reasons. The implication of having to be educated and vocal to ensure fair treatment and possibly even affect outcomes suggest bias and inequality regardless of race, maybe more so as a result of though. Not to mention, this also implies that these healthcare providers had a dawning moment of realization that they couldn’t be complacent or flippant with those individuals. Leading me to ask the question, how many of these healthcare professionals are consciously aware of their behaviour?
Nichole, a woman treated in Glen Ridge, New Jersey for breast cancer, believes that doing research and educating herself ahead of appointments turned communications into conversations. She advocated for herself by being well informed and challenging her medical team when needed. Furthermore, she also made it clear that her illness was a business and she could take it elsewhere if she wasn’t treated appropriately. Nichole says, ‘I think it’s imperative for anyone with cancer to know that it is OK to question and challenge your doctors. It’s also OK to seek new doctors at any given time during the process if you are not happy with your current doctors’. I entirely echo Nichole’s message. While I believe that ALL patients should adopt this mindset and self-advocate, I do not believe it should be the catalyst of ethical treatment. Nor should treating illness as a business be a required tool for leverage.
WHAT’S REALLY HAPPENING
Taking all of this into consideration, the ultimate result of my investigation, based on the responses I received is that more than 80% of respondents feel their experience in cancer care was one of love, compassion and support. I expected to be excited about this finding. If we could just harness the humility, empathy and compassion seemingly rampant in the cancer care environment, and apply it to the rest of society, we could combat marginalization, racism, systemic oppression, this ever worsening disconnection from each other. Maybe then, the pendulum would swing far enough the other way that those in positions of power would truly operate from a place of genuine accountability and respect for all. A big dream I know but the healthcare space over the last few years had really been making a turn towards patient-centric care. I truly believed we could have got there with the right guidance. Now that Covid19 has monopolized and exhausted our healthcare systems, I fear that reality is further away than it was five months ago. That is not to say everyone in healthcare is bad except the teams referred to here. We see the doctors and nurses still in scrubs participating in the protests; out there help folks getting hurt by the very people meant to protect citizens. We see you.
What I felt while scouring the data, instead of excitement, was a deeper despair than when I started thinking about a society free of discrimination and abundant with love. What I learned was, while cancer care professionals are clearly cut of some pretty special cloth according to most of the respondents, there is no denying the devastating healthcare disparities occurring within cancer and outside of it. The reality is, as I mentioned above with pregnancy disparities, that there are some unethical and unjust things that are happening and costing Black, Indigenous and People of Color their lives.
It is important to note that there is no biological reason for these stats to show what they do. This is purely a result of a series of inequitable systems and human conditioning. To learn more about this infographic, including health disparities of African American children, click here.
While these stats are American, this is not just an American problem. These stats have been pulled out of thin air by ‘angry black people’ looking for revenge or free handouts, as I’ve heard some seemingly enraged white folks spew. This is a worldwide issue perpetuated by white idealism. Some of the worst and/or most shocking stories coming out of countries heavily populated by People of Color; such as Jamaica. In 1494, Christopher Columbus ‘discovered’ Jamaica, a country already inhabited by Indigenous people called the Arawaks. It was not long after, due to ill treatment and murder, that the Arawaks were extinct. To my surprise, it wasn’t until 1962 that Jamaica became an independent country. You might ask yourself, if the Indigenous people were killed off and Spaniards took over, why are Jamaican (predominantly) black? Well, slave trading by the Spanish, and later by the English (who defeated the Spaniards in the 1600s for the island). To date, that leaves Black Jamaicans and White Jamaicans battling in the form of politics to this very day. Click here and here to read more. Some (White) people are very triggered by these accounts of history. However, it’s very evident that racism, healthcare disparities, economic disparities, are not an issue of Black, Indigenous or People of Color, but an issue of white supremacy. The same is well documented in Canada and is certainly not limited to healthcare.
A Latina treated in Quebec City, who chose to remain anonymous, felt her doctors were great. However, when she chose to wear a head scarf instead of wigs, and her Latin partner chose to wear a beard, she felt that white people often gave her strange, possibly hostile stares. Also, because she is Latina, people often assume she can’t speak French which is not the case. Her parents have been told many times to ‘go back to their own country’, or to ‘speak French properly’. Things got worse after the failed 1995 referendum. Several government officials hopeful of a separatist future outright blamed immigrants for the loss, which ultimately led to the Premier stepping down after some disparaging statements. Click here to read more. She has also dealt with racist and xenophobic statements from colleagues at work, has dealt with people who don’t believe she deserves recognition for things at work, and has been criticized and judged by colleagues for her French even though she went to French school her whole life. She was even stopped and frisked by police as a high school student because of the clothes she was wearing. Her family was poor and it was all they could afford. She still deals with racism and xenophobia but she doesn’t stay quiet anymore. She speaks up and educates others whether she knows them or not because, ‘keeping quiet is siding with the oppressor’.
If her lifelong experience of racial discrimination wasn’t enough, during radiation treatment, her skin was burned; second degree. When she asked the radiological nurse about it, her concern was dismissed, stating she tans easily because of her skin tone. This was not addressed until she raised the issue with her oncologist.
Click here for the Government of Canada website who has documented a wealth of information outlining statistical information on the 2018 Budget related to gender and race inequalities.
In some instances these disparities are becoming even MORE prevalent. Click here for an article by the Ontario Human Rights Commission on healthcare disparities. This article includes the factors they believe contribute to said healthcare disparities, including direct links between socio-economic status and health determinants, ‘unconscious bias’ of physician behaviour, unrepresentation of racialized groups in healthcare, communication and more.
Something interesting to note in this article is that race and socio-economics could be perceived as two separate issues. However, they are not entirely separate issues. Being someone who grew up in a lower socio-economic environment, I am acutely aware of what is it like to be treated as lesser (as a disabled person during treatment also, for that matter). Not necessarily in healthcare as a young adult but most certainly by other governmental services. Click below to watch an interview I did for Made BeYOUtiful on Gun Violence, Racism and Police Brutality to hear more about how I’ve been treated in the justice system as a young female victim.
As an adult who has been intimately entangled in the healthcare system for more than two and a half years, I have experienced the comparative of being older, better educated, confident and assertive, and experiencing first hand how who and I am, as well as what I look like, impact my interactions and outcomes with professionals. Which I mentioned earlier clearly has an impact on patient experience and even health outcomes. To be very clear, my point is, even Black, Indigenous and People of Color who are educated and present well, regardless of any speculation by my respondents, still have a significantly greater chance of a poorer outcome than me, simply because they are not White. If Black, Indigenous and People of Color were given the same opportunities as Whites, socio-economic disparities and therefore poor health determinants would not occur for, at least THAT reason.
Another very interesting note to take away from this article refers to a case that occurred between the Canadian Human Rights Tribunal versus the Department of National Health and Welfare which accused Health Canada of discriminating against immigrants trying to enter healthcare as a profession, and of blocking people of minorities in science and healthcare from promotions into senior executive roles in 1997. You will notice in the article that this case only took place 23 years ago. Which lends a hand to demystifying the belief that racism in Canada is an issue of the past. It most certainly still exists, and it is firmly lodged within our governmental systems and society.
Those who have managed to defy the odds often have the same perspective; they have had to work harder, present better, be better educated to be worthy and tolerated – accepted at best, among their white peers. One of the respondents, who prefers to remain anonymous, a Black woman treated in Hamilton, Ontario for a potentially pre-cancerous condition called MGUS confirmed this finding; ‘While my experience in the healthcare system has been fantastic, I can’t say the same about corporate business’. She has had to work extremely hard to feel respected and secure in her career. Often times having to make the impossible happen to be seen as a peer. She shared with me occasions of visiting clients with white male counterparts and not being directly addressed until she was able to ‘prove’ herself.
Healthcare systems must stop disregarding the health experiences of non-whites. Healthcare must accept the responsibility of ensuring equitable care for all and this must come in the form of, not allowing, but stepping aside for visible minorities to step forward in higher education and entrance into health and science, or any other industry for that matter, to ensure representation for all.
Finally, I asked these wonderful women whether their perception of humanity has changed since their experience in cancer care and, if they could share any advice with people exploring their own contributions to racism, what would it be. Here’s what they had to say.
Deniece from New York City, New York shared a powerful message, ‘Cancer knows no color, age or bounds. If you are racist, ask yourself if you would like to be treated by a colored nurse or if you would rather die’. She says she feels like she has a bigger family than ever before. Getting cancer certainly changed her perspective on life. However, she admits that she had a hard time finding people who looked like her to support her through her experience. She found Black Breasts Matter – dedicated to improving the experience of Black women with breast cancer. When her searches didn’t produce many other options, she decided to create her own resource. Slay Cancer focuses on slaying the stigma of cancer. She even created a fashion line that looks great and aims to help people feel more comfortable talking about cancer. Click here or visit http://www.slayingcancer.com. Deniece can also be found on IG @niecey_bohanon.
Casey from Chicago, Illinois says, ‘I don’t know if there’s anything you could say to change someones mind’, but we should keep in mind that, ‘We all bleed the same color’. Since battling several diagnosis, she has written a book called, ‘Find Your Way Back to Heart Center’, to help people decide what’s next after cancer treatment. Click here to find it on Amazon. You can find Casey by visiting her on IG @thehappierhustle.
Nichole from Glen Ridge, New Jersey shares her candid message, ‘Don’t be a dinosaur. This way of thinking (white supremacy) is dying and will not hold forever. People of Color are creating and inventing new things every day and are growing in positions of privilege and power’, she says. ‘Don’t become extinct’. She feels that her cancer experience didn’t change her perception of humanity, however, it did change her perception of herself as a human being within her place in humanity. ‘I became more present in the now and more aware of my time on this earth and how I spend it. My experiences are now openly shared and I do what I can for others – a north star for my decision-making process. In the end, you’re only as good as what you leave behind and how it flourishes’.
Erika from Connecticut writes, ‘You never know when you’re going to need help and you may have to throw race out the window. Maybe that nurse will be nice or maybe they won’t and you could easily be treated the way you’ve treated people just like them’.
An anonymous woman treated in Israel says, ‘Systems and beliefs run deep, will take a multi-generational shift to see real change’. She chooses to show others love hoping it will change the narrative, encourages others who are capable of speaking up to do it. It was clear she and I share a similar hope for the future when she wrote, ‘If only we can appreciate everyone’s uniqueness and treat each other with dignity and respect. An uphill task but nothing is impossible. Great strides have already been made. We just need to keep at it’. Even as her experience in Israel was disappointing thanks to the awful treatment she received from some people during her treatment, she says, ‘I still believe humanity will surely win on the side of good’. Her optimism from such an unfair experience is truly inspiring.
Linda from Amarillo, Texas shares some insight, ‘When people decide to disrespect someone, I feel they forget that person is someones’ mom, dad, sister, brother, uncle, aunt. I’m sure they would not appreciate knowing someone would have treated their family member in a disrespectful manner. Treat everyone the way you would like to be treated. We are all human beings. If anything we should be treating each other like family’.
Amanda from New Brunswick, New Jersey writes, ‘I think we should be kinder and more open to those who genuinely want to learn’. She goes on to say, ‘I have always tried to be someone who leans into optimism and this experience has, for the most part, taught me that it’s okay to be honest with people about how I feel and what I’m experiencing. Most importantly, it’s okay to ask for help sometimes — it is not a burden, it is not a bother. You can read more about Amanda’s journey at http://www.amandavscancer.com.
Clare from Hamilton, Ontario says, ‘I had a positive cancer care experience, but it didn’t change my perception of humanity. I think people who work in the cancer field are a special breed. Their compassion levels were off the chart. I felt like they genuinely cared about my well-being and they took their time with me and made themselves available to me unlike other medical professionals I’ve dealt with in the past. Clare is currently striving towards a PhD in Cancer Care.
Two of these women were treated at the same hospital I continue to receive care from, Juravinski Hospital, in Hamilton, Ontario. This is the hospital that sparked my initial curiosity about the experience of others because, once again, there is nowhere I feel safer than in the care of those humans. I was delighted to learn that others who have received treatment there feel much the same way.
In closing, these woman were given the opportunity to share whatever they wanted with me and they were given the opportunity to remain anonymous. If you’re still reading this, you know as well as I do that Black women are labelled angry, resentful, dramatic and unpleasant. However, given the opportunity to be just that, what this diverse group of women have given us is their objective, constructive, optimistic, insightful views on what they believe would contribute to a more unified, equal and equitable society.
I still very much believe that if we could reproduce the humans who cared for us, or at least enlisted them to help develop programs that could teach the rest of us to be more like them, we could affect a far more positive, unified and loving world. However, what I learned from doing the research and speaking with these women is that such a solution, wild as it may be, would only scratch the surface. There are deeply ingrained systemic issues that purposefully keep Black, Indigenous and People of Color suppressed. Moreover, they are impoverished, sick and dying because of it. In fact, in my view, if we spent the time promoting these positive changes in people but chose not to address the systemic issues, it would make us bigger hypocrites than we already are.
It has become clear that there are powerful forces working hard to maintain the systems of oppression. It’s evident in the police brutality that is occurring, in the response of the US government to mostly peaceful protests, in the response of the Canadian government to the Black Lives Matter movement and in the rage that White people inflict on anyone who opposes their views. Knowing what we know today, it is our moral duty to stop looking away because it doesn’t affect us personally. We must exercise our awareness of the human condition to take care not to dehumanize others. We must understand overt and covert racism and name it when we see it. We must speak up. We cannot sit idly by while white people abuse People of Color, like those people did in the video from New Brunswick, New Jersey. We must hold healthcare providers accountable to equal and ethical treatment and practices. We must demand better of ourselves and each other because as these amazing women have made clear, you never know when YOU are going to need their help.
All of these things together, admittedly, is a tall order. I’m well aware. Maybe a great place to start would be simply to stop making assumptions. What you think to be true, could be based on generational racism you aren’t even aware of. So be curious, ask more questions and don’t expect that just because one Black or brown person gives you an answer the same will hold true for everyone else. It’s not the case for White people so it wouldn’t be for anyone else either. So ask questions – but do some research too.
Regardless of whether anyone likes or wants equality, Black, Indigenous and People of Color have shown us time and time again that they can persevere in the worst of circumstances and prevail. And frankly, as the ladies made so clear in their messages here, you never know when you are going to be faced with your own mortality. We assure you, at the end of the day, when you are laying on what could be your deathbed, chances are you probably aren’t going to be interested in scrutinizing the nurses family history. You’re just going to hope they help you. So best to just be kind, because eventually we all need some kindness in return.
Don’t be a dinosaur.
Until next time, you’ve got this. Take good care.
2 thoughts on “The Ugly Truth About Racial Disparities in Healthcare”
This was excellent and well needed.
Thank you for highlighting this issue which gets very little if any attention.
Great piece of work 👍
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Thank you Marcia. I hope it makes a difference!