"40 Years after AIDS, Remembering Dominic D'Souza" in SCROLL (27 May 2021)

June 2021 will mark the 40^th anniversary of the discovery of AIDS, a sobering reality in the face of the current Coronavirus pandemic. While the Indian variant of COVID-19 continues to take its toll in a deadly second wave, Goa has presently recorded the highest rate of infections in India despite being its smallest state. This dubious distinction (the reasons for which have much to do with the tourism-dependent state not going into lockdown earlier than it did this month) sits alongside another virus-related history-making association with Goa. The 27^th of May marks the death anniversary of Dominic D’Souza from AIDS-related causes in 1992 soon after being diagnosed, in Goa, as the first person in India to have become infected with HIV.

Much of what has been written about D’Souza’s diagnosis has veered towards the sensational, obscuring his life’s work as an AIDS activist. Take this newspaper account from 2017 on the 25^th anniversary of his death:

On 14 February 1989, D’Souza … was summoned [by the] … police… [H]e 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 realized that he was HIV-positive.

If this recounting of events appears cinematic, consider that the report also highlights a commemorative event that was held in Bombay to mark D’Souza’s death anniversary, one that included the screening of the 2005 film My Brother… Nikhil (MBN). The gay-themed film, directed by the mononymous Onir, fictionalizes the events of D’Souza’s life and death as the first person in India found to be HIV-positive, yet contains no allusion to the inspiration it drew from the activist’s life.

Writing in 2017 about the genesis of his film, Onir reminisces:

And how can the stigma go? Through understanding…no other way. Maybe cinema helps. As for My Brother Nikhil [sic] (my 2005 film on the life of D’Souza), it’s more the case that the subject found me instead of the other way around. I was hosting a documentary talk show … when I came across D’Souza’s story. It was so powerful that it lingered and I couldn’t shake it off. I had been working on another script, which was supposed to be my first film, but I was now consumed by the urge to make this movie.

For Onir, D’Souza was never more than someone to fictionalize in a film. Onir admits as much in the afterword to the 2011 published version of his screenplay: “I remembered having edited some documentary material on Dominique De Souza [sic] … But I did not want to tell Dominique’s [sic] story. Nikhil was born out of Dominique [sic] but ultimately became a different person.”

Not only does Onir get D’Souza’s name wrong here, but that name is altogether absent in the film’s credits. If D’Souza’s story was so inspirational to Onir, what is to be made of this remarkable elision? Ultimately, the film plays as an act of co-option through the omission of D’Souza’s name for the purpose of foregrounding, essentially, a gay-themed story that is exclusive of D’Souza. 

Because MBN’s narrative is built upon the history of a real person, it takes the form of a biopic, but even as biopics are expected to be fictionalizations of reality, artifice exceeds the truth in Onir’s retelling by never acknowledging the person the film is ostensibly about within the filmic vehicle itself. The genre of the biopic is used in the case of MBN to disappear the real, for its investment is not in telling D’Souza’s history as something that actually happened. Rather, MBN takes D’Souza’s story and accords it other meanings—it shifts the semiotics of HIV-infection from the real-life person’s struggle to the struggles of being gay and Indian. It is then only fitting that D’Souza’s name is never to be seen anywhere in the film.

Undoubtedly, Onir’s choice to transform D’Souza’s story for the express purpose of making a statement about gay discrimination arises from the lacuna around D’Souza’s sexuality—an absence the film must obscure while using his story to tell a tale about a specific kind of sexuality. D’Souza’s sexuality has often been the subject of speculation, conjecture readily giving way to the assuredness of the activist’s queerness.

A case in point is Benjamin Law’s 2014 reportage of his conversation with Anand Grover, the lawyer who took up D’Souza’s discrimination case:

Anand had worked extensively in cases relating to homosexuality and HIV since the late 1980s, when he represented Dominic D’Souza, a gay man who was fired after being diagnosed as HIV-positive … After D’Souza died, Anand became obsessed. Gay men approached him for representation if they were being blackmailed.

Though Grover is Law’s source of information about D’Souza, Law does not say that it was the lawyer who told him of D’Souza’s sexuality; this void around Law’s source of information raises questions about its credibility. 

For Law, it is sufficient that Grover took on cases of homosexual- and HIV-discrimination to then decide that these two requirements are synonymous and proof of D’Souza’s sexuality. Law’s book is titled Gaysia: Adventures in the Queer East, a tongue-in-cheek choice of name. An Australian of Asian origin, Law’s book is an attempt to understand gay sexuality in Asia, with Law himself serving as a cultural informant between West and East. “Research” of this nature continues to demonstrate how fact and fiction dissolve into one another so glibly when it comes to the matter of D’Souza’s life.

The popularization of D’Souza’s story is not solely the territory of Onir’s film, as far as fictionalizations go. When a character in The Lost Flamingoes of Bombay, Siddharth Dhanvant Shanghvi 2009 novel, discovers he has been infected with the HIV virus, he laments to his boyfriend: “Do you know how they treat people like me? A guy in Goa was locked up in a sanatorium when they found out he had it.” Apparently calling upon the stigma attached to being HIV-positive in India, the character’s allusion is an obvious reference to what happened to D’Souza. Shanghvi’s novel, like Onir’s film, abstracts D’Souza’s life to emotionally attach the trauma of HIV-infection to the plight of gay men. In both cases, the invisibilization of D’Souza still relies on the notoriety of the real-life events and the plausibility of HIV-infection due to homosexuality.

That Onir chose D’Souza’s story as the vehicle through which to raise awareness about the plight of middle-class gay men in India springs from the convenient linkages the director makes between what happened to D’Souza and HIV/AIDS-discrimination generally, these matters slipping into one another because of their possible association with sexuality. If for these reasons, then, it is immaterial if D’Souza was gay, for his story is meant to serve the greater good required of it by the director as self-positioned gay rights advocate.

In this vein, the film’s purposeful deployment of D’Souza’s story is about cleaving AIDS-activism from gay rights-activism, despite the relationship between the two. This is equally a historical distortion of D’Souza’s own labours as an advocate for the rights of those with HIV/AIDS; his Positive People, which MBN itself references (renaming it People Positive) is an NGO that serves anyone with the disease, regardless of sexuality. As a figure whose struggles as India’s Patient Zero, in the era of the global recognition of the AIDS crisis, were nationally known, D’Souza’s life lends itself to the cinematic as being the story of an individual who courageously fought a legal battle against discrimination. It is this individuality that MBN borrows and transforms. 

In Onir’s film, the political implications of the protagonist Nikhil’s HIV-diagnosis develops as MBN progresses. Prior to this, as the title itself suggests, MBN occupies itself in presenting an intimate portrait of a brother, but also a son and lover through the personal reminisces offered by the main character’s inner circle. That this young man who loves his family and is a source of pride to them must deal with later disapprobation is what operationalizes the intimacy the film develops, connecting it with the film’s political agenda.

In the sharing of the personal through the narration of the film by Nikhil’s intimates, MBN offers its audience a central character who could very much be like them in his commonplace attachment to loved ones. Consequently, this expands the potential of MBN beyond being a film only about gay issues; it is then also positioned as a film meant for more than an exclusively gay audience, even as its motivation is to champion gay rights. 

That an otherwise ordinary person could face discrimination because of a health problem, makes Nikhil’s struggle, in MBN, the stuff of quotidian existence; that, like D’Souza, Nikhil decides to turn a personal struggle into an opportunity for advocacy then elevates the personal, and intimate, into the political. By conferring upon Nikhil’s journey from ordinary citizen to public advocate the storyline of the genesis of HIV/AIDS in India, as well as the attendant issue of gay rights that MBN develops by borrowing from D’Souza’s AIDS-activism, the personal is not only made public but also heroic. Yet, while creating a cinematic and tragic hero in Nikhil for the cause of gay rights, D’Souza’s story as an early pioneer of AIDS-activism in South Asia is cleaved from the very film it inspired.

Even though it borrows the contexts and settings of D’Souza’s Goa to create itself, MBN makes Nikhil and his family – the Kapoors – ethnically part-North Indian, so that they appear more Indian than had they been distinctly Goan. Part of how MBN eclipses D’Souza’s story is also then in its misrepresentation of his ethnic background, and the obscuring of the Catholic cultural background of his family, in order to create a cognizably Indian filmic milieu for the consumption of a Hindi-speaking national audience.

Because the Kapoors must be identifiably Indian, the fact that the D’Souzas had spent a significant amount of time in East Africa is something the film would have no room for. The D’Souzas’ East African past is no anomaly given the history of Goan travel and residence in that part of the world from colonial times. Were the film to acknowledge such circuits of Goan identity as they are informed by the extra-national existences of Goans might have perhaps allowed it to gesture at shared postcolonial legacies and the still looming crisis of AIDS in the developing world. Re-centring D’Souza’s Goanness may allow for a rethinking of the possibility of decolonial queer activism in South Asia, for it is precisely the far more complex reality of the figure of D’Souza, which MBN leaves out, that may present a queer politics of affiliation unbeholden to the concept of nation and nationalism.

While My Brother… Nikhil uses the form of the biopic to represent the HIV/AIDS-stigmatization of gay middle-class men in an Indian setting, the film would not have been more judicious in actually being a biopic about Dominic D’Souza. The same is also true of any claim that could be made to the veracity of D’Souza’s sexuality, for a film about HIV/AIDS could also be about gay identity. D’Souza’s legacy continues to exist despite its misrepresentations in Onir’s film, so there is little that a possibly more “authentic” biopic could offer. Instead, the larger question to be grappled with is how the politics of advocacy, even in the representation of the marginal, can be manipulated cinematically. That cinematic representations of such nature limit the potential of AIDS-activism, and especially in how its advocates could be remembered and their legacies deployed, is worth more complex consideration for their political possibilities.

Certainly, D’Souza’s legacy far outstrips the treatment it receives in Onir’s film. Grover’s defence of D’Souza, when he battled the discrimination he faced for being HIV positive, in turn led to the lawyer drafting an HIV/AIDS Bill that was passed in April 2017. The Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Act, 2017 thus became the first national HIV law in South Asia that could potentially protect HIV-positive people against discrimination. The afterlife of D’Souza’s activism therefore persists, a legacy that continues to be of importance 40 years into the challenge of HIV/AIDS. 

From Scroll.

Adapted, with permission, from “Twenty-five Years after Dominic D’Souza: What happens when your Queer Icon Refuses to Be?” by R. Benedito Ferrão, pp. 61-83, in Gender, Sexuality, Decolonization: South Asia in the World Perspective, ed. Ahonaa Roy (Routledge 2021).

"In Goa, Disease, Discrimination and COVID-19 in the Afterlife of AIDS" in THE WIRE (6 September 2020)

 

 

“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 aforementioned anecdote attests, being from, or even associated with, Vasco is enough cause to be stigmatized. 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, Mahi Volvoikar, who had been experiencing abdominal pain, was refused attention by a doctor at the Goa Medical College (GMC); 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 advises 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 stigmatization is also personalized as has been seen with episodes of anti-Asian racism in the United States, as well as discrimination against Northeasterners in India.  Additionally, medical professionals, and even flight crew, have faced ostracism 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 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. After all, the first instance of HIV-infection in India was detected in Goa.     

Reporting on the 25^th anniversary of his death, Livemint recalls the circumstances in which AIDS activist Dominic D’Souza discovered he was HIV-positive after a routine blood donation:

On 14 February 1989, D’Souza … was summoned [by the] … police… [H]e 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 realized that he was HIV-positive.

This news coverage also included a commemorative event that was held in Bombay to mark the occasion of D’Souza’s death anniversary, which included the screening of the 2005 film My Brother… Nikhil. As the Livemint article explains, the film fictionalizes 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 sensationalize the stigma D’Souza experienced as India’s HIV Patient Zero. This was also true of several other news stories which chronicled the 25^th 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 its discovery in the late nineteenth century, the stigma associated with TB continues to keep those who may be infected with the disease from accessing medical attention and causes the ostracization of those diagnosed with it, Neti Juniarti and David Evans write 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 politicized. 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,” state Cheng, Juhasz, and Shahani, 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 demonization 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 criminalization” as the reasons why those most in need of medical care fail to receive it, Jih-Fei Cheng argues in a 2016 article in Women’s Studies Quarterly that “[t]hese structural issues, which facilitated the AIDS crisis, continue unabated. As during the early crisis years, women and queers of color continue to be deprived…” Though Cheng’s assessment is of the United States, the conjoining of stigma and crisis in the further marginalization 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 reports in a 2004 essay for Economic and Political Weekly. The outsider status of working-class members of the Vasco community is already stigmatizing 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 favored 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 United States 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 HIV Patient Zero.

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, the 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 placed in quarantine; 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 “[h]e 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,” declares a story in the Hindustan Times. The article 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’ 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 marginalized 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 marginalization. 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’ testimony were accompanied by references to his profession. In effect, such reportage about Remedios’ 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 narrative, 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 exceptionalizes him while not addressing the effects of stigma on the nameless, and most marginalized, 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 marginalized 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 positions of precarity. As Cheng finds, an “increased focus on biomedical solutions…, and the simultaneous decrease of socioeconomic safety nets and medical access, normalizes HIV risk for those most vulnerable.” As a recent World Bank study has concluded, the underfunding of public health has not only placed India on the back foot as far as the COVID-19 pandemic is concerned, but also has the potential to impoverish those at risk. At under one percent 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 in precarious conditions. 

 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. “[T]he 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 designating 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 Goa, patients finding themselves at the overcrowded ESI Hospital  have complained about the 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.

From The Wire.