“The Hospital is Haunted”: Maternal Health, Pandemics, and Collective Care among Indigenous Women affected by HIV

“That hospital is haunted,” Isabel whispered. “I told Shauna not to trust nobody there. Even when she had trouble with her pregnancy, I told her we’d figure it out another way. Don’t ever go to the hospital. It’s haunted.” Isabel is a grandmother from a northern Indigenous (First Nations) community in Saskatchewan, Canada. She shared these words with me during an interview in 2010 when we were working together on a project about motherhood in the context of Saskatchewan’s HIV/AIDS epidemic. While there is much known about the vertical transmission of HIV during pregnancy, there is little known about how HIV affects women’s maternal subjectivities and health care decisions. Over 10 years ago, our research team undertook an eight-year project in partnership with AIDS Saskatoon, the primary HIV service organization in central and northern Saskatchewan, to explore motherhood amidst this pandemic. Much of what we learned through this ethnographic work resonates strongly today as we face the global SARS-CoV-2 (COVID-19) health crisis.

The HIV pandemic hit Saskatchewan, with a population of just over one million, particularly hard. At the time we were conducting this research, the provincial HIV incidence rate was 19.7 per 100,000 population, almost triple that of that the national rate (6.9/100,000). Between 2000 and 2009, the provincial rate had risen by 488%, with the sharpest increase occurring among women of childbearing age. Indigenous women were – and remain – overrepresented in the escalating epidemic, accounting for 90% of all new cases, while Indigenous men accounted for 70% of new cases. Unlike other provinces, where sexual contact is the leading mode of transmission, Saskatchewan’s high rates of injection drug use and opioid addiction are largely responsible for its high HIV rates.          

HIV is entangled with poverty, colonial histories of displacement and child apprehension, as well as systemic racism. The residential school system was established by colonial governments to advance policies of genocide and the assimilation of Indigenous Peoples. Children were removed from their home communities and forced to attend residential schools, where they were subjected to physical, sexual, and emotional abuse. Indigenous mothers were demonized as unfit and unworthy because they did not adhere to standards of maternal care set by affluent settlers. The majority of residential schools closed by the late 1970s, but the apprehension of children continued. In what is known as the “60s scoop,” Indigenous children were taken from their homes and placed in non-Indigenous foster — and adoptive — families. In most cases, the charges of parental abuse and neglect were flimsy at best and reflected long-standing racist biases towards Indigenous communities. At the same time, a eugenics movement was unfolding. For three decades (the 1950s through the 1970s), thousands of Indigenous women in Canada (and the United States) were forcibly or unknowingly sterilized so that they could not have (any more) children.  Karen Stote and Leonardo Pegoraro explain that, like coercive measures in the past, this was done to destabilize Indigenous populations, communities, and families.   

This is the context that informs Indigenous Peoples’ responses to COVID-19 and the specter of hospitalization. As Isabel so clearly articulates, hospitals are sites of haunting fears. For Indigenous women from northern communities, hospitals also represent separation from home communities and family support systems during childbirth and postpartum periods. Pregnant women living with HIV and addiction are at high risk of having their infants taken away after a hospital birth. If they are symptomatic for or exposed to COVID-19, they are unlikely to seek hospital care because the risk that they will be deemed unfit and lose custodial rights are well known and real. Women rendered vulnerable by unrelenting colonialism and racism as well as the unabating HIV pandemic, therefore, steer clear of both the hospital and clinic-based maternity services. Instead, they embrace and endorse strategies of collective care: kin-centered maternity and cooperative mothering. These practices have their roots in the long-standing and enduring ethos of community well-being and child nurturance found across diverse First Nations in Canada. “It’s just how us Natives have always done it,” Isabel explained. “When a … mother has a baby, the community has a baby and we take care of the baby. We don’t see it no other way.”    

The HIV pandemic continues to rage on in Saskatchewan. Incidence rates have declined somewhat but remain the highest in Canada. Addiction treatment is increasingly difficult to access. Deaths from opioid overdoses continue to climb, and health care budgets are shrinking. Indigenous communities endure the heaviest burden of ill-health and distress associated with HIV and its associated conditions. COVID-19 exacerbates this burden of illness. Beyond the significant clinical risk to those with HIV-compromised immune systems, there is the cultural risk as well. Social distancing and self-isolation measures constitute a life-threatening and culturally unfathomable proposition for women who rely on extended networks of kin for child-care, health promotion, and harm reduction.

With the onset of COVID-19, pregnant and post-partum women were told once again to seek clinic-based programs. This is a step backwards. Saskatchewan’s maternal and newborn heath care programs have been adapted over the years to accommodate the vulnerabilities and precarities wrought by the HIV pandemic. Health authorities responsible for overseeing care in Saskatoon, the largest city in the province, for example, strengthened the Healthy Mother, Healthy Baby program that provides in-home service provision for expecting and new mothers who live with addiction, HIV, food insecurity, and risks of violence. The nurses, nutritionists, and outreach workers who provide these services also connect their clients with other programs in the province in order to “promote optimal pregnancy outcomes and lifestyle choices.”  

These programs are successful in many ways. There are, however, three pressing concerns. First, addiction and HIV are not “lifestyle choices.” They are health conditions arising from the structural violence perpetrated by police officers, government officials, housing authorities, and health care personnel for generations. Second, the primary programmatic focus is the mother-infant dyad that figures centrally in Euro-Canadian traditions. There is limited support for broader trajectories and experiences of motherhood. This stands in sharp contrast to the ethos of collective care that the women who participated in our AIDS Saskatoon research rely on and champion. Third, current COVID-19 restrictions limit the provision of home-based services. Only hospital- and clinic-based services are currently available, and women are told – in some cases, legally mandated – to access maternal and newborn health care at those sites. However, to Isabel and the other 30 women with whom we worked for the AIDS Saskatoon project, the hospitals are still haunted.  The history of child apprehension, individualized coercion, and racist stereotyping looms larger than ever.  Isabel’s words from 10 years ago resonate today: “Shauna got to stay out of the haunted hospital and stay with us, her family,” she insisted. “We can’t trust nobody out there. The haters, the abusers, the baby-snatchers, the drugs, it’s bad out there.”

Structural change and cultural safety are needed in order to quiet the haunting ghosts. Respect and programmatic accommodations for family-centered care as well as long-term commitments to harm reduction services will move us closer to those goals. COVID-19, while adding exponentially to the burdens carried by Indigenous mothers, may also provide a moment of reckoning and reflection for the health care workers committed to providing the best services possible. We must seize this moment, but how? Structural change takes decades, sometimes generations, to effect. Shifting our focus from individual mothers to broader family networks so that collective care strategies can be emboldened and supported is the first step. Services can be matricentric and family-focused at the same time. AIDS Saskatoon has taken this approach successfully by prioritizing community safety and well-being while simultaneously respecting the needs of mothers who access their services. Other health care programming can follow their lead.

Leaders in the health care sector at provincial and national levels can support Indigenous leaders as they publicly denounce the assaults on Indigenous mothers during court mandated wellness checks for mothers deemed to be at risk for drug use and/or experiencing mental health issues that have drawn recent media attention. This may allow greater receptivity for reinstating home-based Healthy Mother, Healthy Baby care with all the public health precautions necessary to minimize COVID-19 exposure and transmission. This could provide greater safety for Indigenous mothers while also acknowledging and honoring traditions of family-care.

These are some of the basic premises of cultural safety as Fjola Hart-Wasekeeseekaw and Scott Koptie, among others, have articulated. They set out that for which medical anthropologists have long called: a meaningful engagement with the sociopolitical realities that structure the lives of those seeking health care, a reorientation of care away from reductionist understandings of maternal health and towards more integrative and network perspectives, and a move towards collaborative practice that allows women to declare where, and from whom they will seek care for themselves and their families. 

Pamela Downe is a Professor of Archaeology and Anthropology at the University of Saskatchewan. She is a medical anthropologist with expertise in infectious disease ethnography, maternal health, cultural safety, and the health repercussions of violence. She is author of Collective Care: Indigenous Motherhood, Family, and HIV/AIDS (University of Toronto Press). pamela.downe@usask.ca