Interpersonal Caring as an Act of Resistance Among Socially Marginalized

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Editor’s note:

Some of the most marginalized and stigmatized people in a community are those with psychiatric diagnoses and those who are HIV positive. What remains common about these two groups are how they are portrayed through a “humanitarian gaze” as helpless, burdensome, and unable to contribute meaningfully – their lives are often reduced to how much they cost (Global Burden of Disease). In this piece, Gaurav Datta takes us through a pictorial journey of the lives of some of these people at Philip AIDS Center. Among death, despair, dehumanization, and drugs (antipsychotics), Datta challenges our ideas of humanitarian care and biomedicalization in showing how residents take care of each other.

Night at Philip AIDS Center. Philips AIDS Center in a village near Anjar, Gujarat was established by Father Paul on 11 January 2005, after he lost his nephew Philip, 31 years old to AIDS. He named the place Philipdham (Philip-after his nephew, dham- Hindi word for abode). The residents, most of whom were either born in Gujarat, or had somehow ended up in Gujarat, had been referred to this Center by hospitals, various non-governmental organizations, or simply arrived here by word-of-mouth. This place shared several similarities with a therapeutic community such as hierarchy based on length of stay, community living, responsibility towards others, social learning, and active participation in group living. On being asked the motivation to care, one resident had explained “Aaj usko mera zaroorat hain, isliye mein karta hu. Kal ko mujhe kisi aur ki zaroorat hogi. Yahan pe sab aise hi karte hain” (Today, he needs me, that’s why I do it. Tomorrow, I’ll need someone to help me. Everyone acts like this over here).

When the Sisters called Father Paul to the patient ward that night, he asked me to come along but did not reveal why.  Ajay was at the door as usual, but this time he did not greet Father Paul with his daily question “maut kab aayega?” (when will death come?). Father Paul followed his routine of visiting the patients in a sequential manner, first the balcony, then to the TV room, the dining room, the male ward, and finally to the female ward where Jaya ben was. Two of the Sisters had gathered around Jaya ben, trying to feed her a mix of dal and rice from a steel plate with raised rim. Jaya ben just sat there on a chair, probably too tired to swallow, and also too tired to resist. A senior Sister came into the room with a bag full of chikoos, and cheerfully announced “These are so sweet, perfectly ripe! We will have a fruit salad party tomorrow.” Maybe Jaya ben would enjoy the chikoo more, I thought. Someone remembered that there were grapes as well and went off to get them. Another Sister went to find a bowl to mash the chikoos and grapes for her. Father Paul went around the room, touching the foreheads of the other residents until he reached Jaya ben. He spoke to her, chiding her playfully to eat. Jaya ben’s face did not light up on seeing him this time as it usually did, but had a look of extreme tiredness and exasperation, almost begging to be freed from this ordeal. He took her pulse, blessed her on the forehead, and asked me to follow him to the ‘medicine’ room. I was hesitant, but complied anyway. 

Father Paul in the ‘medicine room’ updates the medical files of the residents at night. Most of the residents when they arrive present with advanced HIV, low CD4 counts, and often with AIDS. A number of them present with psychiatric diagnoses as well, however it is not clear whether these psychiatric complications are a result of HIV or arise independently. The ART medicines are obtained each month from the Government ART clinic in Bhuj for all residents who are HIV positive, and for those with mental health conditions, the psychiatrist at the Government Mental Hospital in Bhuj prescribes the medications. For medical emergencies, the residents are taken to a small hospital in the neighboring town of Anjar.

Father Paul was supposed to leave for another city, so we had an early breakfast at 6:15 am. Everyone was worried about Jaya ben. She had been having epileptic fits for a few days, and had cut her forehead having fallen down from the bed. The Sisters and other residents had then made a bed for her on the floor, and were now debating whether to get her admitted to a neurology ward in the hospital instead of a taking her to a psychiatrist. Jaya ben had been diagnosed with ‘psychosis unspecified’ along with HIV, and has been on different anti-psychotics and sleeping aids for more than 5 years. “Admitting a female patient would require someone to stay with her. With Father Paul gone for a few days and one Sister with Jaya ben, how can the two of us look after all the residents?” one Sister sighed. “She hasn’t been eating much lately, and is getting weaker and weaker” I said. “Let’s see for some time, I will return if there’s an emergency” said Father Paul. Afterwards, at prayer following the sermon, Father Paul asked us to pray for Rajesh – another resident’s speedy recovery who was supposed to go into surgery today for a small tumor that had been delayed for quite a while. “And our beloved Jaya ben, may she recover quickly as well.” We all prayed.

Vinod, a resident at Philip AIDS Center. The only “qualification” for being a part of this community is to be “HIV positive”, Father Paul jokes. For these residents, their ART booklet, provided by the local ART center is their only legal identity, which makes availing of any form of government mandated “care” other than their dose of antiretroviral medication difficult, as all such facilities now require possessing a national identity document (the AADHAR card). Stigma also plays a major role in their illness experience as one resident commented “Bimari hum ko hai, par badnaami unko hogi. Unka bhi koi kasoor nahin hain, samaaj mein rehna hain. Kaisa hua, yeh bhi nahin bol sakta hai.” (I am the one who’s ill, but they’re the ones who’ll get a bad name. It’s not their fault either, they have to live in society. I can’t even tell how I got infected).

To imagine the landscape not as a passive entity, but as a silent witness to their struggles and resistance.

To imagine these people as having traversed these landscapes losing all their belongings and sense of self.

To whom do we attribute the ability to care?

To what extent do we challenge our own assumptions on care and the ‘Humanitarian gaze’?

Susan Sontag writes in Illness as Metaphor and AIDS and Its Metaphors that “Where once it was the physician who waged bellum contra morbum, the war against disease, now it’s the whole society”, and this war has now extended to the ‘diseased’ as well. She further goes on to add that “Military metaphors contribute to the stigmatizing of certain illnesses and, by extension, of those who are ill”, and that “the most terrifying illnesses are those perceived not just as lethal but as dehumanizing, literally so”.  Now, as antiretroviral therapy (ART) becomes more accessible and people with HIV live longer, it is important to remember that palliative care also constitutes an important aspect of HIV care (Harding, 2018), and it is this form of interpersonal care among the residents that I attend to in this essay.

Female residents receive their daily dose of medications from the Sister in the morning. The medications include antiretrovirals, vitamins, sleeping aids, and anti-psychotics. In the absence of proper medical records of the residents, it remains a challenge to diagnose. The residents seem somewhat aware of this; however, it is the medicalization of their illness experience that they resist. One female resident Anju ben who had come to this Center when she was 12 stayed on at the Center and got married. However, she passed away from childbirth complications at the age of 26. Her husband still visits the Center sometimes with sweets and snacks for all the residents. 

Recognizing that the media’s depiction of HIV/AIDS has primarily been one of “death voyeurism”, which has strongly shaped the view that people with HIV/AIDS  and psychiatric disorders need to be cared for by ‘us’ (Campbell, 2008), and that ‘they’ are incapable of caring for others and which continues to be perpetuated in global health (Charani et al., 2022), I wanted to shift away from the ‘humanitarian gaze’ and use these photographs both as a way to depict and challenge existing notions of care. Thus, to recognize the act of caring itself as resistance, resistance to the biomedicalization and dehumanization of their illness experience, and as acts of solidarity and survival in this world (Cook, Trundle, 2020).

Sanjay, a resident, poses for a portrait. Sanjay loves telling stories, and would often spend hours telling me about his adventures; like how he once had come across Khalistani separatists in Punjab, or how he used to sell half-rotten mangoes in Mochi bazaar, Calcutta. He is particularly proud that he never did ‘ghulami’ for anyone (never worked under anyone) and always had his own ‘dhanda’ (business). 

It could be tempting to dismiss the role of role of medicines in the lives of these people: Father Paul established this Centre in the memory of his nephew Philips whom he lost to HIV/AIDS at a time when antiretrovirals were not easily available, the residents know very well that the antiretrovirals are what keeps them alive. It could also be tempting to undervalue the biomedical care as provided by the Sisters and think of it as ‘pharmaceutical domestication’, or to overstate the role of spirituality and prayers. To instead, recognize that the various forms of care as co-existing with each other, often unsettling and defying strict categorization. 

Suraj and Nirmala ben. Suraj, born with HIV and orphaned at an early age, was barely a teenager when his uncle had brought him to the Center. Suraj used to address another female resident Nirmala ben as his mother, and had once remarked “Ye meri ma hain, iski dhyaan rakhna” (This is my mother, take care of her) when he was being sent to his uncle by Father Paul. This photograph of them was made on the day of his departure in 2018. Suraj however, passed away two years later. Now Nirmala ben walks around the porch all by herself; sometimes someone calls out to her, she stops to look, but then continues to walk in circles, rarely sitting still. 

Notes On The Photographs

All photographs were taken between 2015-2022, combining the methods of participant observation, volunteering, visual ethnography and photo-elicitation. The names of residents have been changed to protect their identity, and all the residents photographed gave their informed consent to have the above photographs published. For the residents who were unable to provide consent, they were either not photographed, or photographed in a way to not reveal their faces. 

References:

  1. Campbell, David. The Visual Economy of AIDS, 2008. https://www.david-campbell.org/photography/hivaids
  2. Charani, Esmita et al. (2022), The use of imagery in global health: an analysis of infectious disease documents and a framework to guide practice. The Lancet Global Health, Volume 11, Issue 1, e155 – e164
  3. Cook, J. and Trundle, C. (2020), Unsettled Care: Temporality, Subjectivity, and the Uneasy Ethics of Care. Anthropology and Humanism, 45: 178-183. https://doi.org/10.1111/anhu.12308
  4. Harding, R. (2018). Palliative care as an essential component of the HIV care continuum, Lancet HIV 2018; 5: e524-530. 
  5. Sontag, Susan (1989). Illness as Metaphor and AIDS and Its Metaphors. Penguin Classics. 
Gaurav Datta

Gaurav Datta is a postdoctoral researcher in neuroscience, substance use, and HIV at the University of North Dakota. Along with a biomedical approach, he is interested in the lived experience of HIV/AIDS and substance use recovery. For this, he uses methods in narrative medicine, psychological anthropology, and visual ethnography, and conducts fieldwork in the Indian states of Gujarat and Kashmir where he works on people with HIV/AIDS and substance use disorder respectively. Some of his work has been published in visual anthropology journals and exhibited in spaces across North Dakota.

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