Representative image: Graffiti depicting doctors during the coronavirus pandemic. Photo: PTI.
This article was first published on September 6, and was republished on December 1, 2020, on the occasion of World AIDS Day.
“A reporter from South Goa’s mining belt, untouched by COVID cases, suddenly finds that he will hardly have guests for his wedding … When neighbours and other villagers learnt that the bride was from Vasco, they decided to politely but firmly refuse,” a local newspaper reported when Mangor Hill, in the city of Vasco da Gama – more popularly known as Vasco – became Goa’s first containment zone in June 2020. This development was the result of a rising number of coronavirus infections among residents in the area.
But as the anecdote attests, being from, or even associated with, Vasco is enough cause to be stigmatised. And while this scarlet lettering of the bride-to-be may be explained away by suggesting that people wanted to avoid being at a mass gathering, though “the wedding [had] been planned strictly according to guidelines from the Union government,” according to the news report, there have been other, far more egregious examples of stigma faced by people from Vasco.
In July, for example, Mahi Volvoikar, who had been experiencing abdominal pain, was refused attention by a doctor at the Goa Medical College. Her husband turned to social media to complain about the discrimination they faced when the medic asked them to leave upon discovering they were from Vasco.
In the realm of contagious diseases, stigma proliferates infectiously. As Leonardo de Castro advised in a 2015 issue of Asian Bioethics Review, “Stigma and discrimination continue to occupy the core of [an] epidemic. More than being mere side issues…, these … become part of the epidemic itself … Stigma and discrimination [develop] into a separate disease and must be treated as such.
Several instances of anti-Chinese rhetoric from across the globe are proof that the stigma attached to the coronavirus pandemic has international ramifications politically. Yet, the pandemic-related stigmatisation is also personalised – as with episodes of anti-Asian racism in the US and discrimination against Northeasterners in India. Additionally, medical professionals, and even flight crew, have been ostracised in various Indian cities because of the belief that they might expose others to the virus, given the nature of their work.
Thus, the stigma that people from Vasco da Gama have experienced lately because of the high number of COVID-19 infections in their city is certainly not unique. Nonetheless, infectious-disease-related stigma in Goa occurs within the umbra of a particular history of contagion discovery and virus-associated prejudice. Reporting on the 25th anniversary of his death in May 2017, Livemint recalled the circumstances in which AIDS activist Dominic D’Souza discovered he was HIV-positive after a routine blood donation thus:
On 14 February 1989, D’Souza … was summoned [by the] … police… He was handcuffed and taken to Asilo Hospital in Mapusa, where doctors gathered around him. They didn’t touch him but asked him several questions: Did he have sex with prostitutes, was he a homosexual, did he inject drugs? It was only when he saw a nurse pass by holding a file with the words “AIDS” printed on its cover that D’Souza realised that he was HIV-positive.
This news coverage also included a commemorative event that was held in Mumbai (then Bombay) to mark the occasion of D’Souza’s death anniversary, which included the screening of the 2005 film My Brother… Nikhil, directed by Onir. As the Livemint article explains, the film fictionalises the events of D’Souza’s life and death as the first person in India found to be HIV-positive. However, the film’s credits contain no allusion to the inspiration it drew from D’Souza’s life, a point the news story itself elides. Inasmuch as the article attempts to separate what happened to D’Souza from the cinematic retelling in Onir’s film, the luridly rendered details only manage to further sensationalise the stigma D’Souza experienced as India’s HIV ‘patient zero’. This was also true of several other news stories which chronicled the 25th anniversary of D’Souza’s demise.
D’Souza’s diagnosis resulted in his unlawful sequestration for two months at a tuberculosis (TB) sanatorium that was no longer in use. Coincidentally, when the first cases of coronavirus infection were detected in Goa in March, those found to have come in contact with a traveler from Dharwad who had tested positive for the disease were held in isolation at a TB hospital in Margão. The loss of life caused by TB in Goa and elsewhere in the subcontinent is not just a distant memory; that hospitals still exist to deal with the infectious disease is proof to the contrary.
Despite the discovery of its causative agent in the late 19th century, the stigma associated with TB continues to keep those who may be infected with the disease from accessing medical attention and causes the ostracisation of those diagnosed with it, Neti Juniarti and David Evans wrote in a 2010 issue of Journal of Clinical Nursing. Three decades apart, the use of TB facilities to hold Goa’s first HIV-positive patient as well as those suspected of having COVID-19 demonstrates the potentially stigmatic association created between newly occurring diseases and historical ones.
Unlike TB, which is caused by bacteria, what HIV and COVID-19 have in common is that they are viral infections. But the coincidences do not stop there, though the viral structures and modes of transmission differ between the two diseases. Reporting for the US National Public Radio, Lesley McClurg lays out the similarities between the early days of the AIDS epidemic and the coronavirus pandemic: “Results from small studies are overblown. Officials change course abruptly. Public health is politicised. Lives become statistics. Headlines tout new cures. Vaccines are promised.”
Indeed, what McClurg reckons with here is how viral outbreaks become public crises to be managed by state administrations, and while this may appear to be an obvious course of action, this is precisely where things go awry. The designation of an event as a crisis creates “an occasion for judgment, an opportunity to render power,” in the words of the editors of the 2020 book AIDS and the Distribution of Crises. In other words, crisis management as an administrative tool of authority can result in the manipulative demonisation of an individual or community.
Who then bears the brunt of a crisis during a viral outbreak? Naming “downward socioeconomic mobility, unstable housing, inadequate healthcare, exposure to violence, … [and] HIV stigma and criminalisation” as the reasons why those most in need of medical care fail to receive it, Jih-Fei Cheng argued in a 2016 article in Women’s Studies Quarterly that “these structural issues, which facilitated the AIDS crisis, continue unabated. As during the early crisis years, women and queers of colour continue to be deprived…”
Though Cheng’s assessment is of the US, the conjoining of stigma and crisis in the further marginalisation of already underserved communities, in the wake of dealing with contagious diseases, is not geographically specific. In Goa’s Mangor Hill, the local MLA was forced to admit that efforts to alleviate the hardships of the sequestered community had failed, with many having been starved due to their poverty.
As a port town, Vasco da Gama has historically hosted migrants from various parts of India, and even Goa, as temporary labourers and settlers. As a port-of-call legendary for its sex-workers, the area of Baina became a repeated target of rehabilitation programs, Shaila Desouza reported in a 2004 essay for the Economic and Political Weekly. The outsider status of working-class members of the Vasco community is already stigmatising and even more so in a time of crisis, for such a populace is readily scapegoated.
Citing a 1985 newspaper poll that “revealed a majority of Americans favoured quarantining people with AIDS” at a time when knowledge of the disease had first become prevalent, McClurg draws comparisons between that epidemic and the present pandemic, especially its impact on particular populations. For her story, McClurg interviewed Jesus Guillen of San Francisco, a queer Latino community activist who had immigrated to the US in 1984. When he had first found out that he was HIV-positive, Guillen told no one, for “they were not allowing people [with the disease] to stay…”
McClurg says that, following the declaration of the coronavirus pandemic, Guillen “didn’t balk when officials announced the stay-at-home directive,” for it was not the health crisis alone that made him wary. As Guillen recalls of the 1980s, “social distancing [occurred] through discrimination, through a stigma, through homophobia … we got the real social distancing.” It had been no different for Goa’s D’Souza.
But following his diagnosis, D’Souza did not allow the stigma of his public outing as ‘patient zero’ to turn him into a recluse. Like Guillen, he became an activist. Shortly before his death in 1992, D’Souza, along with his friend Isabel de Santa Rita Vás, started Positive People, a still-existent Goa-based NGO that serves the needs of those with HIV/AIDS. D’Souza also worked with Anand Grover of Lawyers Collective to battle the discrimination he faced for being HIV-positive. In turn, this led to Grover drafting an HIV/AIDS Bill that, in April 2017, became the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Act, 2017 – the first anti-HIV discrimination law of its kind in South Asia.
In his activism, D’Souza had the support of a community, including his mother Lucy D’Souza, a nurse who sought the help of friends and family to fight for her son’s rights.
In March 2020, the very first COVID-19 cases were detected in Goa. The three diagnosed with the infection had returned to the state from visits abroad and were quarantined. One of them chose to make his identity public via a testimony, essentially making him Goa’s COVID-19 ‘patient zero’. While in isolation at the Employees State Insurance (ESI) Hospital in Margão, a state-designated coronavirus treatment facility, Edgar Julian Remedios “surprised many” in early April when he “authored a testimonial of his whirlwind journey from Houston to Amsterdam to Cairo to Mumbai and Goa over the last month on his Facebook account and decided to tear to shreds, the shroud of stigma which patients afflicted by the dreaded virus tend to cower under,” as an article in the Hindustan Times put it. It also posits that Remedios, unlike other patients, “was willing to expose his identity…”
Reversing the process by which D’Souza’s identity was made public as Goa’s ‘patient zero’ at the onset of the AIDS epidemic, through a defamatory outing over which he had no control, Remedios’s self-outing as one of the first patients with COVID-19 in Goa may suggest that disease-related stigma can be overcome simply by taking control over the narrative. But what of those upon whom a narrative is cast, as happened with D’Souza, and is ongoing in the situation of marginalised communities in Goa?
It is evident that both D’Souza and Remedios wanted to dispel stigma, and create awareness about the diseases that afflicted them, by subverting their marginalisation. Consider, however, that as was the case with the headline in the Hindustan Times, which reads “Back from Cairo, Engineer Deconstructs Stigma in Isolation,” various articles about Remedios’s testimony were accompanied by references to his profession. In effect, such reportage about Remedios’s stigma-battling testimony sought not only to highlight his bravery but also code it in respectability politics due to his profession.
These reports also eschew any acknowledgment of how access to digital and other forms of media allow one to craft their own narratives, the access and outcome itself often made legible by one’s socioeconomic status. Where D’Souza’s path to becoming a pioneering figure in AIDS-activism in South Asia arose out of infamy, the propriety accorded Remedios by the press exceptionalises him while not addressing the effects of stigma on the nameless, and most marginalised, others who suffer from the same affliction.
To be clear, even within a pandemic, not all feel the effects of ostracism and crisis mismanagement equally. If with HIV/AIDS, the most disproportionately affected are marginalised queer and women subjects, then COVID-19 has taken its toll most apparently on the poor, as in Mangor Hill, and migrant labourers all over India. Dispelling stigma is insufficient if it is not accompanied by institutional change, especially in serving the needs of those in precarious positions.
As Cheng finds, an “increased focus on biomedical solutions…, and the simultaneous decrease of socioeconomic safety nets and medical access, normalises HIV risk for those most vulnerable.” And as a recent World Bank study concluded, the underfunding of public health has not only placed India on the back foot as far as the COVID-19 pandemic is concerned, it also has the potential to impoverish those at risk. At under 1% of its GDP spent on public health, India ranks among the lowest globally. That this translates annually into 60 million Indians being driven into poverty because of healthcare costs indicates how dire the situation is for those already on the edge.
Goa’s state-run medical facilities similarly display many of the failures of the Indian public health care system due to underfunding – circumstances worsened by a pandemic, as is the case at the aforementioned ESI Hospital. “The first major legislation on social security for workers in independent India,” the ESI Act (1948), which governs the running of this hospital, makes clear that its defining purpose is to address “health related eventualities that … workers are generally exposed to,” according to the website of the Ministry of Labour & Employment. That Mangor Hill – a working class community – was the first in Goa to be declared a containment zone coincides with the designation of the ESI hospital, created to tend to workers, as the first state-run facility used to quarantine and treat coronavirus patients.
As the rate of infections has risen in Goa, not least due to the resumption of economic activities in Vasco and other parts of the state, patients finding themselves at the overcrowded ESI Hospital have complained about inadequate services while the staff have been overworked. The ESI hospital was where Remedios was convalescing in April and, in his testimonial, he spoke of how well he was treated there. In the months that followed, the experience of many has been otherwise. Though subverting stigma is of much merit, the possible co-optation of such efforts in masking the mismanagement of health crises continues to reveal how disease and discrimination are challenges to the very systems that both, address and abet them.
R. Benedito Ferrão is an assistant professor of English and Asian and Pacific islander American studies at the College of William & Mary, Virginia, US.