K. Eliza Williamson is a medical anthropologist and a lecturer in the Latin American Studies program and the Department of Romance Languages & Literatures.
In a WhatsApp exchange late last year with L., one of my research participants in Brazil, she told me about the hardship she was experiencing. Not only was Brazil’s rising COVID-19 death toll devastating especially structurally vulnerable families like hers, but she was feeling “exhausted” by her daily care duties and “paralyzed” by “everything we go through” as mothers of disabled children in contemporary Brazil.
L. is the mother of a young son diagnosed with a severe form of congenital Zika syndrome (CZS), a conjunction of neurological malformations that impact sensory, motor and cognitive development. Zika arrived in Brazil around 2014, where it caused the largest outbreak yet recorded, before spreading to 86 other countries. What brought Zika to international headlines was not the virus itself, but instead the precipitous rise in cases of microcephaly (small head size due to incomplete brain development) and other neurological malformations between late 2015 and early 2016. Brazilian doctors and scientists discovered that in pregnant people, Zika can pass through the placental barrier and infect the fetus, leading to an increased risk of preterm birth, fetal death and stillbirth, and fetal malformations. In utero, the virus disrupts fetal brain cell development, producing the pattern of anomalies now known as CZS. Most of the over 3,500 Brazilian children born with CZS have multiple disabilities and will need specialized care for the rest of their lives. The state of Bahia, where I have been researching on issues of health equity for the past 15 years, has the highest number of confirmed cases of CZS in the nation.
When I tell people that I’m researching disability in the context of Zika, people tend to assume I’m referring to the kids’ disabilities. But most of my work thus far has been with the children’s mothers. While not many of them identify as “people with disabilities,” our ongoing conversations have called my attention to how they themselves are disabled by intensive caregiving under conditions of duress.
Since 2016 I have followed a group of families in Salvador da Bahia, Brazil, who are living with the embodied consequences of the Zika virus. I left Brazil to work at WashU just months before the COVID-19 pandemic began. As of this writing, COVID has killed over 609,000 Brazilians, a number that would likely be much lower were it not for current president Jair Bolsonaro’s blithe denialism and criminal mismanagement of the crisis. Bahian mothers in my research have had to contend with limited access to basic necessities and health services as well as exacerbated social isolation and the deaths of loved ones.
This ongoing research highlights the importance of engaging critical disability studies in the effort to understand the unequal, embodied afterlives of epidemics and pandemics.
L.’s references to exhaustion and paralysis were only partially metaphorical. Like most of those directly impacted by Zika, she relied primarily on the paltry government assistance paid monthly to disabled people or their caregivers. It was barely enough to cover basic necessities, let alone any outside support for her son’s intensive care needs. Her husband, who was working only sporadically fixing air conditioning units when opportunities arose, had still not bothered to learn how to properly feed their son, so that even the precious little time L. had to rest and socialize with friends was interrupted by urgent calls telling her to come home and resume her caregiving duties. “This routine,” she said, “is exhausting for me… These last months were really difficult… I almost went mad.” In addition, she had been bedridden with chikungunya, another mosquito-borne disease, and was still feeling its after-effects. When she tried venturing out of her home to visit the dentist for a broken tooth, she fell and injured her ankle and knee. L. told me she was “learning to live with pains” and that she now understood “how people get depression or even go crazy.”
Both Zika and COVID-19 bare stark racial, gender and class inequalities around the world.
Both Zika and COVID-19 bare stark racial, gender and class inequalities around the world. In Brazil, families raising kids with CZS are primarily Black or Brown, poor and living in neglected areas of the city, and mothers are usually the primary or sole caregivers for their disabled children. While the federal government initially failed to collect racial data in relation to COVID hospitalizations and deaths, scholars and activists note that the virus — as well as the government’s grave mishandling of the outbreak — has disproportionately impacted Black and Indigenous communities (more on that here, here, here and here).
Both pandemics also highlight the necessity of engaging with critical disability studies to understand the unequal, embodied impacts of infectious disease outbreaks. Critical disability studies interrogates how ableism intersects with racism, misogyny, imperialism and other forms of oppression. It also asks how disability is unequally distributed globally, and how it is produced through various forms of structural violence.
Perhaps the most obvious connection between COVID-19 and disability is the phenomenon of “long COVID”: those lingering effects of COVID infection that include fatigue, headache, difficulty breathing, loss of sense of smell and sometimes concentration or memory issues. COVID can be directly disabling. And certainly, disabled and chronically ill people are disproportionately represented among those most at risk of dying from COVID infection. But there is also the mental and physiological strain caused by watching loved ones die, being socially isolated during quarantine, being overwhelmed by family care responsibilities, fearing infection, losing a job, experiencing food and/or housing insecurity. All of these can lead to diminished embodied capacities, and all are compounded by ongoing structural violence.
What does it do to the bodyminds of mothers to care intensively for their children in a social and political context that does not support them in doing so? How is the current COVID-19 pandemic — and the measures implemented to contain it — shaping this care, and what impact will its aftermath have on the families?
It may be years, and probably generations, before we comprehend the full impact of Zika or COVID-19. But by closely attuning to the stories of those living with the embodied consequences of these outbreaks, their structural causes and their collateral effects, we can begin to grasp what it means to live with the complex, embodied effects of pandemic disaster.
Additional writing by Eliza Williamson on this topic: http://somatosphere.net/forumpost/what-comes-after-covid-19/.