An Inuit Approach to Cancer Care Promotes Self-Determination and Reconciliation

For thousands of years, Inuit have adapted to the changes in their environment, and continue to find new and innovative ways to survive

But life expectancy among populations in Inuit Nunangat (the traditional territory of Inuit in Canada) is an average of 10 years less than that of the general Canadian population.

Cancer is a leading cause of this disparity. Inuit experience the highest mortality rates from lung cancer in the world, and mortality rates of some other cancers continue to increase disproportionately.

Inuit communities tend to be self-reliant and are renowned for working together for a common goal, which is evident in their self-governance and decision-making activities. They have also endured a long history of cultural insensitivity and negative health-care experiences that span generations

Map of Inuit Nunangat (Inuit Regions of Canada) (Inuit Tapiriit Kanatami)

The ways the Canadian health-care system interacts with Inuit populations plays an important part in this health disparity. And there is an urgent need for Inuit to be able to access and receive appropriate health care. 

Elder Peter Irniq speaks about the remarkable Inuit capacity for survival in extreme conditions

In 2015, the Truth and Reconciliation Commission of Canada (TRC) report made 94 recommendations in the form of Calls to Action. Seven of these Calls to Action specifically relate to health. They explain the importance of engaging community members, leaders and others who hold important knowledge in the development of health care.

As members of a team of Inuit and academic health-care researchers, we have been working with health-system partners to support Inuit in cancer care. We focus on enhancing opportunities for Inuit to participate in decisions about their cancer care through the shared decision-making model, in a research project we call “Not Deciding Alone.”

We travel thousands of miles for cancer care

Our collective success in addressing the TRC Calls to Action will require health research to focus on addressing the health-care inequities experienced by Inuit, First Nations and Métis populations in ways that take action to promote self-determination. 

This is important as current health-care models do not often support Indigenous values, ways of knowing and care practices.

Poor cultural awareness in our mainstream health-care systemsdiscourages Indigenous people from seeking care and engaging with health services. It increases the risk that Indigenous people will encounter racism when seeking care

Small boats make their way through the Frobisher Bay inlet in Iqaluit on Aug. 2, 2019. THE CANADIAN PRESS/Sean Kilpatrick

There are many documented instances of our health-care system’s failure to provide appropriate health care to Indigenous people, due to unfair assumptions and demeaning and dehumanizing societal stereotypes.

These health system failures discourage people from seeking care, and have resulted in death, as in the case of Brian Sinclair,who died after a 34-hour wait in a Winnipeg hospital emergency room in September 2008.

There can also be significant physical barriers to care for Inuit. Critical health services such as oncology specialists and treatments are often located in urban centres such as Ottawa, Winnipeg, Edmonton, Montréal and St John’s, thousands of kilometres away from remote communities in Inuit Nunangat. This leaves many Inuit negotiating stressful urban environments, dealing with cultural dislocation and navigating complex health systems without the benefit of community support networks.

People must fly out of remote communities for cancer treatment. (Alex Hizaka), Author provided

During our research, an Inuit peer support worker explained what it can be like for those who travel far from their family and community for their care: 

“People come with no idea of why, and we are having to bridge two worlds for them. Often patients have no idea why health-care providers tell them to get on a plane, and then they think they are coming for treatment for three days and then it becomes two weeks. It is a tough situation as often people have no money, no support. People need to be able to explain their situation and how it is for them. People need to know that they are not alone.”

Research shows that these geographical challenges significantly impact access to health care and are often exacerbated by language barriers. Together these factors may make people vulnerable to additional harms unrelated to the health conditions for which they seek treatment.

Patients and health-care providers work together

Shared decision-making is an important evidence-informed strategy that holds the potential to promote patient participation in health decisions

In this model, health-care providers and patients work togetherusing evidence-based tools and approaches and arrive at decisions that are based on clinical data and patient preferences— to select diagnostic tests, treatments, management and psycho-social support packages. 

Shared decision-making is considered a high standard of carewithin health systems internationally and it has been found to benefit people who experience disadvantage in health and social systems

Shared decision-making has also been found to promote culturally safe care, and has the potential to foster greater engagement of Inuit with their health-care providers in decision-making

The concept of cultural safety was developed to improve the effectiveness and acceptability of health care with Indigenous people. Culturally safe care identifies power imbalances in health-care settings — to uphold self-determination and decolonization in health-care settings for Indigenous people

The aim of a shared decision-making approach is to engage the patient in decision-making in a respectful and inclusive way, and to build a health-care relationship where patient and provider work together to make the best decision for the patient.

Most importantly, our approach has emphasized ways of partnering that align with the socio-cultural values of research partners and community member participants, both to develop tools and create approaches to foster shared decision-making. The term “shared decision-making” translates in Inuktitut to “Not Deciding Alone” and so that is the name of our project.

The results are outcomes that Inuit are more likely to identify as useful and relevant and that respect and promote Inuit ways, within mainstream health-care systems.

Self-determination through Inuit Qaujimajatuqangit

Our research uses the guiding principles of Inuit Qaujimajatuqangit — a belief system that seeks to serve the common good through collaborative decision-making — as the foundation for a strengths-based approach to promote Inuit self-determination and self-reliance

Inuit Qaujimajatuqangit principles have been passed down from one generation to the next and are firmly grounded in the act of caring for and respecting others. 

There is important learning taking place within academic and health-care systems that involves deepening understandings of what “patient-oriented care” means. We need to learn how to do research in partnership with those who are the ultimate knowledge users in cancer-care systems — patients.

In our work, Inuit partners and community members are leading the development of shared decision-making tools and approaches, building on their strengths and resiliency. Our research and health systems are beneficiaries of these partnerships that hold potential to create health care that is welcoming and inclusive for all. 

With guidance and support from Inuit and more broadly, from Indigenous partners, we are learning how to take action on the TRC recommendations, and to make respect and kindness integral to best practice in research and health care.

Janet Jull is a Assistant Professor, School of Rehabilitation Therapy, Queen's University, Ontario

THIS ARTICLE WAS ORIGINALLY PUBLISHED ON THE CONVERSATION

Birth Fate: Institutionalized Racism in New Zealand Prisons

New Zealand has the second highest incarceration rate in the Western World, beat only by the United States. Yet, there is an unequal distribution throughout prisons, with Maori making up majority of those incarcerated. The explanation lies in history.

Historic prison in Dunedin, New Zealand. Benchill. BY-SA 3.0.

New Zealand has been praised for its efforts in incorporating aspects of indigenous culture into everyday life. Road signs are posted in both English and Maori. Students in school learn Maori history and culture. The All Blacks do the haka. But looking beneath the surface it is apparent that racism against the Maori culture still very much exists. This is no more evident as in the incarceration rates. Maori make up about 15 percent of New Zealand’s population but over 50 percent of the prison population. This difference has to be examined not just on a criminal justice level but also from a historical perspective. 

A study from the University of Otago, found that there three main reasons behind the high incarceration rates for Maori people. They are structural racism, intergenerational trauma, and colonization. Of course these three are all intertwined with colonization being the cause for intergenerational trauma and structural racism. The biggest effects of colonization come from subordination and institutionalized change. Having a change in the value of wealth – to one of monetary and property value – and being on the losing end of that spectrum creates a never ending struggle. Maori justice system before colonization revolved around group accountability and following tikanga, the Maori just way of being. Prisons involve punishment and individual causation. Adapting to a system whose values are drastically different than your own and having to fight for your land and culture, has left the Maori at a disadvantage. 

On an individual level, majority of inmates had been a victim to violence, had a mental health diagnosis or brain injury, did not have proper schooling, and/or had a parent who also had been in correctional facilities. Poverty on its own is a huge factor in crime statistics with first acts being committed out of necessity. Add on top of that, generational histories of crime, violence, and mental health, it is hard to break the cycle.  

If you look both at the history of New Zealand and the history of the person, it is no surprise that institutionalized racism exists. The current government is working on reducing the number of people incarcerated but it is hard to tackle the problem when Maori representation at the government level is lacking. They are looking towards examples from Norway, with community correction facilities, and there are programs working to bring Maori values to prisons. But until more effort is done to correct inequalities in wealth, education, and healthcare it may be hard to have lasting change. 

DEVIN O’DONNELL’s interest in travel was cemented by a multi-month trip to East Africa when she was 19. Since then, she has continued to have immersive experiences on multiple continents. Devin has written for a start-up news site and graduated from the University of Michigan with a degree in Neuroscience.

What I Couldn’t Admit Until Now After Months Of Traveling While Black

I’ve been trying to find a way to write this since I’ve gotten back to the United States with a single backpack and next to no money. For the four months that I was away, the United States of America seemed to unravel in a way that I hadn’t seen before and my bones felt so excited, so prepared to come back.

Starting in December 2016, I traveled throughout the Philippines for three months and spent another month in South Korea. This trip was integral, influential in so many ways to me. I dove headfirst into a new region of the world that I’d previously not given much thought to and I can still recall sitting in this bedroom only a week or two before that trip began and thinking, “What am I getting myself into?” as I researched the ins and outs of some of the things that I might experience.

Sometimes I feel that there is a switch in black people specifically. We tread through the world as flawlessly or strongly as possible. We climb ladders, break glass ceilings, win athletic events, and do so in the name of a lineage that has been stripped away from us. The black experience in the United States is so unique and tortured and real in ways that is still hard to express to people who haven’t been born into it or have spent their entire lives trying to contextualize it.

I believe this switch in each black person is a way to protect us, push us forward, and allow us to navigate spaces that we are not always readily welcomed into. As I traveled through the Philippines more specifically, this switch was turned on all the time. From the very first days of stepping off the plane and meeting people of different backgrounds and classes and political ideas, I was faced with a wave of self protection that was layered into how I interacted with anyone that I met.

Kids would follow me in the streets and point. Some people would ask to take photos. Others would ask questions about my dreadlocks. One time in Chinatown, my friend exclaimed behind me, “Wow, a black person!” because as he walked behind me in the crowded city streets of Manila, it became so obvious that people just didn’t stare as I walked by. They gawked. Kids sometimes called me the N-word because it was probably what they’d seen black people call each other in rap videos or movies.

“Wassup my brother?” was also a common thing for kids to say to me.

I had moments where I had to explain the basics of anti-blackness in the United States to some Filipinos. One time a woman told me that my hair looked crazy. One night I was lost while trying to meet friends and at a club. Filipino cops stopped me and asked if I needed help. During their gracious car ride, they asked me if it was true that black men had bigger penises.

Layer all of this with the fact that I am queer and understand that much of the world has a complicated relationship/ideal of acceptance towards the LGBT community; you can begin to guess why this guardedness was a part of how I interacted with people.

As a black person, I have learned to demand presence in so many spaces that I step into. As an activist, I try to be intersectional and aware of the political context of spaces that I enter. I could never go wholeheartedly into another country as an American and expect everyone to be educated on the nuances of life as queer, black male in the United States. Culture is deep and can be changed in an instant or over the course of decades, centuries.

But with this deep need to understand things as they come, feelings often get muddled. In South Korea and the Philippines, I would let people touch my hair, something that’s sort of an unspoken violation of respecting black folks and their bodies. At the time, I chalked it up to exhaustion, a lack of willingness to fight for respect for my racial experience at all times. Now that I am faced with the prospect of wondering if I should go back to the region of SE Asia for another trip, I am finally able to realize the whopping truth of what I often felt.

Humiliation

I felt humiliated and tried to stuff it inside of myself, wake up every day and face the adventure of being a backpacking entrepreneur on the other side of the world, something that is a privilege of it’s own. But the truth was that I’d drained my bank account to be there. I constantly thought,

“Why the fuck did I travel across the world to deal with this racist bullshit?”

Most of the time I was too afraid to express these feelings to Filipino people, almost in the same web of anxiety that I used to have when censoring myself when around white folks here in the States. In fall of 2016, I helped organize a memorial for Ty’re King, a 13 year old boy shot and killed by Columbus Police. At the memorial, a white guy came over and expressed his condolences. Then he compared the 13 year old boy to Osama Bin Laden and tried to spew his white privilege and fragility all over a space meant to show respect for black pain and this boy’s life.

I remember being angry, telling the guy to get the fuck away from me and how hot and immediate my body felt. So much of the past three years to me has been trying to dig into the power that allows myself to believe, “It’s okay to be angry. It’s okay to admit that you were humiliated. It’s okay to pop off.”

As black folks, we are so often used to being told that we hold the weight of our entire community on our backs. This is a reinforced ideal, that for black folks, is so different than the language around other racial groups. If you are black, how many times have you heard the following?

Don’t be hanging with those white folks and thinking you can do all the things that they do.

You gotta work twice as hard to get half of what they do.

Those white folks will be watching you.

I took care of you so you could hopefully take care of me and your father one day.

All of these are signifiers of the complicated bridge that weaves the black experience. We want to be seen and heard, but when we are denied representation, we claw our way into spaces and tell ourselves that we are “unapologetically black”.

Issa Rae, the creator of the show Insecure, recently said, “So much of the media presents blackness as fierce and flawless. I’m not.” This statement immediately made sense to me because the Strong Black Woman stereotype has been around for a reason. Self care is discussed, but how do we exercise it? Why are black people often left with the burden of contextualizing how racism and stereotypes continue to exist and hurt us? Why do we believe that we have to be so damn strong, so damn resilient all the time? What would break if we let the dam loose, let the world know how we really feel?

Is it because if we are afraid that the world would aim to destroy us once more if we were honest?

The answer could be in afro-pessimism and what Frank B. Wilderson III describes in an interview:

Normally people are not radical, normally people are not moving against the system: normally people are just trying to live, to have a bit of romance and to feed their kids. And what people want is to be recognized, to be incorporated. And when we understand that recognition and incorporation are generically anti-Black, then we don’t typically pick up the gun and move against the system, even though that’s impossible. And I think that our language is symptomatic of that when we say that ‘I don’t like police brutality’. Because, here we are saying to the world, to our so-called ‘people of color allies’ and to the white progressives, ‘we’re not going to bring all the Black problems down on you today. If you could just help us with this little thing, I won’t tell you about the whole deal that is going on with us.’
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What freaks them out about an analysis of anti-Blackness is that this applies to the category of the Human, which means that they have to be destroyed regardless of their performance, or of their morality, and that they occupy a place of power that is completely unethical, regardless of what they do. And they’re not going to do that. Because what are they trying to do? They’re trying to build a better world. What are we trying to do? We’re trying to destroy the world. Two irreconcilable projects.

Maybe self care starts with recognizing the disappointment I felt every time in the Philippines when I’d be informed that I was “the first black person” to frequent a particular business or area of the country. Not only was my mind mangled by trying to contextualize all of the racist/stereotyping attempts by people I’d met trying to get to know me, but I was also faced with the fact that, once again, I was one of few to explore in certain ways.

So I’ll say it again. I felt humiliated and as I sit here, I find it hard to come up with many reasons to go back for the foreseeable future. When I admit this, a deeper anxiety slips in that I refuse to really indulge. This anxiety says, “Well, if you’re a traveler and you’re black, does this mean you’ll never really find a home in the world? A place that gets what it’s like to be you?”

As for the answer to this question, I don’t know, but the hopeful part of me says that I need to keep searching on my own terms before I allow my already short life of 23 years to be marred by a belief that the world is wholly inaccessible to me, a black person that wants a world where different identities are respected, but never vital to someone’s value.

If I wanted to put these horrible realizations to deeper use, I would ask myself the question, “Well, what would I feel if I just went back? And got over it?”

Maybe I’d be attempting to actualize a stronger version of myself that can deal with being stared at all the time, asked if I play basketball and told I should put my sexuality (which is fetishized by white supremacy) to good use. That version of myself, I don’t think I would like very much. That version of myself would lessen the vulnerability that I feel is so integral to creating compelling art and embodying the kind of blackness that acknowledges the strength of who we are/what we are capable of while not stripping myself of the ability to feel pain, anxiety, anguish, and humiliation.

This vulnerable version of myself is what I believe is the ideal reality to struggle towards. One where walls and borders and barriers that are physical become as obsolete as the one in our minds, but maybe that reality is only possible with people like me (and hopefully you), who face the turmoil as it comes and uses it as a way to inform how we go into the world next time around.

 

THIS ARTICLE WAS ORIGINALLY PUBLISHED ON FUTURE TRAVEL.

 

PRINCE SHAKUR

Pro-black, feminist, lover of locs and queer with restless feet.