COVER STORY
DIABETES: THE HIDDEN EPIDEMIC
Dr Ananya Banerjee (centre) with Shudipta Shabnam Islam (left) and Amina Khan. Image credit: MOHAMMED KHAN.
By SHAGORIKA EASWAR
Conventional wisdom has it that South Asians have been dealt a poor hand when it comes to diabetes and cardiac disease.
A physician had talked about South Asians being genetically predisposed towards both in an interview for a feature we carried in Desi News 25 years ago.
It was alarming, almost fatalistic. Why even bother staying away from ghee-soaked parathas and deep-fried samosas, from mithai which is, to quote another physician, nothing but a sugar bomb, if we were going to get diabetes at some point in our lives anyway? Of course, that’s not what the physicians were saying, at all. But the thought remained. We’d inherited diabetes in our genetic lottery and our lifestyle and our foods didn’t help.
Happily, over the years, that has changed, with research pointing to several other causative and contributing factors. We still have among the highest rates of diabetes in the country, but at least now we are looking in the right direction.
“We are focusing on social determinants of diabetes in the South Asian community, particularly in Canada,” says Dr Ananya Banerjee. “In public health, we’re taking a community determinant approach to create health programs, advocacy, a push for social services for immigrants to reduce risk and to improve access to diabetes reduction programs.”
She founded the South Asian Health Research Hub in 2018 with a team of public health professionals, public health students and graduates from the South Asian diaspora to look at ways to improve the community’s health and well-being through research, education and advocacy.
Dr Banerjee, the principal investigator, was drawn to the field through her family’s experience. Her parents came to Canada in the 70s. Well-educated, fluent in English, they led what she describes as a “relatively privileged life”. They ate healthy, exercised moderately, and thus she was shocked when her father was diagnosed with diabetes in his late-50s. But when their family doctor talked about the process of migration and how hard it can be on one’s health, it started to make sense.
And the assistant professor of Social and Behavioural Health Sciences and Epidemiology at the Dalla Lana School of Public Health at the University of Toronto thought of how much harder it might be for those who are economically challenged or not-so-fluent in English. When her mother developed pre-diabetes as soon as her father passed away, Dr Banerjee began to connect the dots between stressors and disease.
“Diabetes is an epidemic in our community,” she says, stating the stark facts.
Individuals originating from South Asian countries (including India, Sri Lanka, Pakistan, Nepal and Bangladesh) in Canada are at three to five times the risk for developing Type 2 Diabetes compared to people from other parts of the world, says Dr Banerjee – 27 per cent as against 11-17 per cent in the general population.
The Peel Region, home to one-fifth of Canada’s South Asian population, has the highest rates of diabetes in the country.
While there’s definitely a genetic component, says Dr Banerjee, it’s not a simple, one-size-fits all answer.
Genetics is just one of the pieces in the puzzle. When it is coupled with social factors, the environment and behaviour patterns, the risk multiplies.
“The risk increases with a family history of diabetes. Without proper management of risk factors while they are young, South Asian teenagers with a family history of diabetes are more likely to also develop diabetes when they are older.”
Most of the research on diabetes in the South Asian community continues to focus on our genes and diets, says Dr Banerjee. But precarious jobs, food insecurity, no recreational opportunities, lack of digital literacy, not knowing how to access health resources... all of these are factors.
“The taking away from social determinants is, frankly, quite frustrating,” she says.
“Instead of talking about ghee and mithai, why not talk about food insecurity? Instead of talking about not exercising, why not talk about the lack of resources or spaces to do so? About those who are overwhelmed with work and have no access to paid sick days?”
We internalize blame instead of bringing a lens to factors that are often dismissed.
Many of us are not aware of the extent to which diabetes impacts a person’s life.
It’s always on your mind, says Dr Banerjee, speaking from her parents’ experience. One is constantly checking sugar levels. If they are high, there’s stress. When one is constantly monitoring what one is eating, even occasional indulgences can cause guilt and again, stress.
“People who are diagnosed are referred to programs that teach them how to manage the disease. But they don’t get information relevant to their diets. Many South Asians completely leave their original diets behind. We need a discourse that understands and addresses these factors.”
The Hub established the South Asian Adolescent Diabetes Awareness Program (SAADAP) to teach South Asian teens with family history of diabetes everything they need to know about the disease so that they can build healthy habits as they move into adulthood. To give them the tools and information they need to make healthy choices for a diabetes-free future.
As part of this, the team produced Beyond The Body, a photo-voice exhibit to share the unique experiences of South Asian youth tackling the diabetes epidemic in the Peel Region. The presentation looks beyond traditional biomedical and behavioural approaches to diabetes prevention, and highlights the impact of social and systemic factors on the development of diabetes. It examines how migration stressors, income insecurity, mental health, the built environment, and interpersonal relationships influence diabetes risk in their racialized communities.
In it, several young people discuss issues that impact health:
Parents or grandparents who had to work minimum wage jobs because the qualifications and work experience they came to Canada with were not recognized and they didn’t have the monetary resources required to upgrade their skills.
Shudipta Shabnam Islam (left) and Amina Khan.led the Beyond the Body photo-voice project. Image credit: MOHAMMED KHAN.
Lifestyle is not always a matter of choice when one is in a precarious job or working double shifts. People lack the time and the energy to exercise and don’t have the money to join gyms.
The built environment in areas where low-income families congregate is also often not planned with health in mind. Walking trails, parks or community centres are either missing or not easily accessible.
Stress is a daily companion for those struggling to put food on the table and also, healthy food options invariably cost more – think of the price of a salad vs four samosas for a dollar. Even at the school cafeteria, junk food is way cheaper than healthy food. They describe what are called “food swamps”.
Stress is also passed on to the next generation that is pressured to do well at school. Academic success is the only way out, parents repeat.
Unrealistic parental expectations result in their gobbling down food because there’s no time for anything other than studying. No time to plan a meal, or go for walks. Even sleep gets neglected in the pursuit of high grades.
Rhea Gupta, 18, is one of the participants. Currently in grade 12, she plans on pursuing the Health Sciences program for her undergrad.
Her mother is diabetic.
Aware of the risk factors due to family history, Rhea says a lot of their decisions as a family revolve around finding ways to maintain a healthy balance in their daily routines and dietary issues.
“My parents are always looking for ways to prevent my sister and I from developing diabetes. As I have seen the negative impacts on health and lifestyle because of diabetes on my mom, the potential threat of developing these serious problems never really disappears. As a family, we support one another, and also ease and manage the stress of one another by helping each other out. On a day-to-day basis, we observe the high demands of diabetes-related care, whether it be through dietary means or simply the monitoring of blood sugar levels.”
Being the eldest daughter in a South Asian family comes with a lot of responsibilities, says Rhea – one of them being an “unofficial” third parent to her younger sibling.
“There’s this constant expectation that I need to be the perfect role model, while also excelling academically and lending a hand with chores. There are many moments where I am unable to cope with maintaining a balance with my personal and school life – and I am expected to excel in both. I understand that my parents just want me to have access to new windows of opportunities to succeed. I can’t even imagine the struggle they must have gone through to simply adapt to a new country and modifications in lifestyle as they set aside their dreams and goals just to provide my sister and I with new opportunities.
“However, these expectations from school and families translate into unrealistic expectations. I chose to focus on the effects of these expectations on the mental health of children because I wanted to be the voice that many choose to ignore. Mental health and coping mechanisms to overcome mental health challenges are often an uncomfortable topic, particularly within South Asian households.”
She was 14 when she first participated in SAADAP and says she was very timid and reserved at the time, especially when it came to openly voicing her opinions. Spending time with the team helped build confidence. She describes it as a platform to engage with other youth about things that are important to them. By participating in this study, Rhea says she learned about the many factors that contribute to the chances of developing health issues. And that these factors are not always direct or easy to recognize.
“We often get so caught up in worrying about our future, that we forget to take a moment and reflect on what is going on in our life at the present moment. It is important to recognize how minor modifications in our lifestyles can essentially benefit us long term. Listening to the stories of other youth council members, I realized how it is up to us to help educate other adolescents about the socio ecological factors contributing to the chances of developing diabetes in the near future.
“I use my involvement as a youth council member as a platform to help spread awareness. I also initiate discussions with my own family to come up with better alternatives or modifications of our daily routines. My family might then discuss these improvements with their friends and I feel that through these discussions, we spread this knowledge.”
Stereotypes can be dangerous and misleading – the high incidence of diabetes among South Asians is no coincidence, nor is it a case of karma. But why is the South Asian community disproportionately impacted? Don’t all immigrant communities face the same situations?
“We are really trying to understand the migration experience, the stresses associated with the resettlement process,” says Dr Banerjee. “Being a person of colour, you face different discriminations. Of course, Black and Indigenous communities continue to face a lot more, but COVID-19 really shed light on how South Asians in Peel are disadvantaged.”
Image credit: VIVEK KUMAR on Unsplash.
South Asians in Peel are highly represented in precarious work situations – more than 80 per cent of warehouse workers in the GTA are based in Peel, according to a report in the Toronto Star dated February 11.
“We have to look at risk holistically, look at the numbers and the science. If it was only about genetics, then we wouldn’t see the drop in rates among third generation South Asians in Canada. We’re starting to see the difference in people when they are doing well, when they are in positions of power.”
But if migrant issues among the South Asian population in Canada are the cause, then how does one explain the fact that India has the second highest diabetic population globally and the rates are only going up?
It’s a complex story, says Dr Banerjee. In India, the numbers are higher in urban settings, among people with higher incomes. With increased urbanization and mechanization, people are walking less. Fast food chains are exploding, creating food swamps in India, too.
“The behavioural aspect is more a factor there than in Canada where it is more the issues associated with resettlement.
“Numbers are starting to show people getting diabetes in their early 30s and 40s. Given that we have a tendency, understanding the risk reduces the possibility of getting diabetes in future. A model that I have followed is from the US where the Black and Latino populations show high rates. That is true of the Indigenous populations, too. If we don’t act now, it will only get higher and higher.”
This realization was behind a shift in her thinking. She was aware of the risks, she was taking care of herself, but she felt it was of vital importance to make youth more aware of factors.
“The existing programs are more about ‘You need to do this’ and less about how to live healthy within their social circumstances. We wanted to go beyond just the cultural context, we wanted to explore the social context. Youth who participated in SAADAP became personal health coaches for their parents and grandparents.”
Most previous research has studied South Asians as a collective whole. The Diabetes Disparities Study conducted by the Hub examined diabetes prevalence among immigrants from five South Asian countries living in Ontario.
Of the 431,765 first-generation South Asian immigrants studied, 68,440 had a diagnosis of diabetes. After standardization for age, sex and income, diabetes prevalence was highest among South Asians from Sri Lanka (26.8%) followed by Bangladesh (22.2%), Pakistan (19.6%), India (18.3%) and Nepal (16.5%) in comparison with the non-immigrant population (11.6%).
What do we understand from this? Why do the rates vary among the sub groups?
Trauma could be one major factor, says Dr Banerjee. “The Tamils who came to Canada as refugees hold that trauma. Trauma and stress can change the metabolism of the body, can lead to diabetes and also cancer and cardiac disease, along with other health conditions.”
Beyond The Body ends with a call to action, urging the government, academics, healthcare and social service agencies and school boards to bring about change.
This includes restructuring diabetes education programs by incorporating a social determinants of health framework which shifts the blame away from the South Asian community and creates interventions that are equitable, culturally safe and community-informed.
Culturally safe interventions would mean moving away from programs so focused on diet and exercise that they perpetuate blame, says Dr Banerjee.
“During our research, we’ve heard people say no one asks what their work schedule is, if they feel safe walking late at night. Culturally safe interventions would take trauma and stress into account, validate that experience. Have someone understand where you’re coming from, acknowledge that you’re not lazy but that you don’t have the luxury of time to exercise.”
Not having traditional home remedies dismissed as useless could be another factor.
“We all know people who believe consuming bitter foods like soaked methi (fenugreek) seeds or karela (bittermelon) juice helps cure diabetes. We always say to check with your physician first about remedies that make you feel culturally-connected, and if he or she gives the go-ahead, why not? My mother takes both!”
Asked what can we do as individuals to reduce our risk of getting diabetes, beyond the changes they wish to see policymakers implement, Dr Banerjee’s response is blunt.
“Until we start to see changes in social policy, what individuals can do is limited. What we can do is become more aware, and become advocates to shift policy. We can also think of more creative ways to take care of ourselves.”
Her top suggestions:
• Offer gender-based programs at places of worship or community centres.
• Have community-led programs.
• Conduct workshops on how to cook South Asian food in a more healthy manner.
• Develop community gardens to tackle food insecurity and perhaps also grow more culturally-familiar food.
• Expand reach by conducting sessions virtually for those who don’t drive or lack convenient transit routes to get to existing programs.
• Come up with stress management solutions from within the community, from those who understand the stresses.
“We need a more grassroots approach,” she says. “As a South Asian professor, drawing in South Asian students to learn from a South Asian perspective has been one of the unique aspects of our work. It’s an aspect that’s very rewarding, and one I take pride in.”
DID I BRING IT UPON MYSELF?
Image credit: POOJA SHAH on Unsplash.
We may understand the statistic, we often lose sight of experiences. Amina completed a Master of Public Health in Social and Behavioural Sciences from the Dalla Lana School of Public Health at Uof T. Her grandmother is diabetic.
“Diabetes care takes a lot out of you,” she says. “It has high demands regarding eating, exercising, monitoring, and planning, and on top of these factors there is also a large social burden. Diabetes is a highly stigmatized condition. For communities that are at a great risk of developing diabetes, such as South Asians, feelings of self-shame and blame are really common. It’s commonly assumed that diabetes is a condition people bring upon themselves and there is little consideration for the non-medical diabetes risk factors such as household income, education, acculturation, housing, and food security – which have an even greater impact on diabetes risk compared to behavioural and life-style factors.”
Having always taken the “science route,” Amina followed up an undergraduate degree in Kinesiology with a Masters in Public Health. But as someone who was also drawing from the time she could pick up a pencil, she was looking for ways to merge her passions for creativity and health. The photo-voice project was a perfect fit and an opportunity to work with youth from her own South Asian community.
“My areas of research focus before were on adolescent health and this brought together my interests perfectly,” she says. “Additionally, what motivated me to participate was that while there is an abundance of research on our community, there are large gaps in understanding of what truly shapes our wellbeing. And the individuals behind those numbers often become invisible. So while we may understand the statistic, we often lose sight of experiences. This is something I wanted to bring attention to in a creative way. The arts-based research method of photo-voice is really important in addressing health inequities. The power of storytelling, which we achieved through the photo-voice project and documentary, can really help bridge those gaps in understanding and help dismantle the common misconceptions and stereotypes around South Asian health.
“Participating in the study changed the way I perceive diabetes and diabetes prevention efforts. It made me realize how pervasive misconceptions around the factors that affect health and specifically South Asian health truly are, both within and outside of the South Asian community, and how harmful this can be. It made me realize the need for more projects like this. Beyond the research side of things, we were also able to build meaningful engagement with the youth who participated in SAADAP. A subset of them moved on to form a Youth Health Awareness Council which builds on the work of our research project and helps them to become agents of change in their communities.”
Health means looking at more than just what we put on our plate. Shudipta also completed her Master’s of Public Health in Social and Behavioural Health Sciences at the Dalla Lana School of Public Health, specializing in Community Development.
Currently, she is a public health researcher at the Wellesley Institute, where she is working with the City of Toronto to examine the impacts of community violence exposure on youth mental health.
She was drawn to the project because she has always been passionate about health equity, human rights, and social justice.
“These are the values that lie at the cornerstone of all the projects that I undertake or participate in. This project was really important because to achieve health equity for the South Asian community, we must understand what health looks like for many South Asians – and that includes looking at more than just what we put on our plate. The evidence continues to show us that broader systemic factors play a bigger role in determining our health. The policies around us that govern how our neighborhoods are built, the regulations that prevent immigrants from getting their credentials recognized, the social culture that allows casual racism and discrimination – these are just a few of the things that affect the health of South Asians every day. And I’m sure that other racialized and/or immigrant communities will parallel a lot of these experiences.
“Our South Asian youth participants talked about these issues. They have stories that deserve to be told and voices that need to be heard. They’re here to break stereotypes. I participated in this project so I can play some part in making this story heard by a wider audience.”
The biggest takeaway for her was that we need to continue to advocate for our health as a community, and we must appeal to our governments and hold them accountable for adopting policies that use a ‘health-in-all-policies’ framework.
“Governments must make all their policies with health in mind – whether these are policies for regulating vending machines at school, for ensuring green spaces in all neighbourhoods, or for safe working conditions in minimum wage jobs.
“The government has the responsibility of taking care of all communities – a social contract as some would say, and as citizens we have the power to demand for, and bring about, positive change and better policies.
“As a researcher, a key part of my focus is ensuring my work can have meaningful policy implications so that we don’t just work outwards (for the communities we serve), but also work upwards to engage governments and other agencies in the process of creating change. Facilitating the Youth Health Awareness Council (YHAC) with our photo-voice youth participants is an important part of keeping that conversation and civic action alive.”
WATCH: BEYOND THE BODY
To watch Beyond the Body, visit https://www.southasianhealthresearchhub.com/beyond-the-body-photovoice-exhibit