Interrupting caregiving, inviting distress-sharing: Narratives of care from people living on the streets

By Sudarshan R Kottai and Shubha Ranganathan

How do we understand the term ‘care’? How do we conceptualize the diverse meanings of ‘care’ in different contexts? And how do we allow for dynamic interchanges between the roles of care-giving and care-receiving, resisting normative designations of the carer and the cared for? These questions are all the more pertinent in the case of persons with purported psychosocial disabilities, for whom questions of choice and agency are typically seen as less imperative than the need for ‘care’. Yet, what is meant by ‘care’ is often not questioned in such moral injunctions towards care, such as the recent Mental Health Care Act of 2017. This Act seeks to “provide for mental healthcare and services for persons with mental illness and to protect, promote and fulfil the rights of such persons during delivery of mental healthcare and services.” According to this legislation, ‘Mental healthcare’ includes analysis and diagnosis of a person’s mental condition and treatment as well as care and rehabilitation of such person for his mental illness or suspected mental illness. It has been hailed as a progressive Act in some quarters, who have described it as an enforcement of the ‘right to care’ (Patel, 2013). Patel vouches for the need for ‘evidence based care’ of the 50 million affected with mental health conditions in India by increasing mental health care resources including mental health specialists and mental health beds. Patel invites the attention of the political leadership in order to end neglect of mental health sector. Although a legislation for the ‘right to care’ appears impressive, what is often not recognized is that ‘care’, here, has been defined largely as ‘medical care’, exemplified in the provision of psychiatric medication. In response to the evolution of the new mental health care act, Davar (2012) had warned of the political economy behind modernising mental health care through right to care by facilitating private psychiatric facilities to bloom under the garb of providing access to treatment. In the Mental Health Care Act, psychiatric treatment and diagnosis are seen as pathways to care, but does that really translate into care for the receivers of care? Is there a strict compartmentalisation between care-giving and care-receiving? Does being psychosocially disabled make one incapable of being a caregiver? We argue here that care-giving and care-receiving are co-constructed during the process of distress-sharing and that the idea of a one-way hierarchical process of receiving care from caregivers is detrimental to the very concept of caring itself. This caregiver-care receiver relationship is problematic if caregivers (NGOs and mental health service providers) employ it universally with marginalised groups.

This article describes narratives of care from people living on the streets who are presumed to suffer from psychosocial disabilities. These persons were ‘rescued’ and provided ‘care’ by two NGOs (non-governmental organizations) working for the ‘homeless mentally ill’. The trained social workers of these NGOs screen the city streets in the daytime to identify ‘homeless mentally ill’ people. They try to build rapport with potential clients by offering them food or clothing. This relationship becomes the conduit for providing psychiatric care by giving them medicines, administered either directly or without the person’s knowledge such as by mixing them with food and water. If the rapport with the street-dweller becomes strong, the offer of shelter, food, and clothing by the social workers is accepted by her/him. Consequently, they are brought to the shelter, after which their movement is restricted. Hereafter, the ‘inmate’ is kept in custody and forced to follow the routine and regimen dictated by the NGO.

Being homeless in itself doesn’t warrant intervention by the NGO and hence, the need to distinguish between ‘homeless’ and ‘homeless mentally ill’ becomes paramount and critical for the NGO as we would show here. The need to care for a street dweller arises from the idea that they don’t reside in homes just like we all do. In fieldwork, we have been to certain homes of ‘street-dwelling patients’ who were ‘rescued’ and offered treatment. In some cases, we found their homes to be more pathetic than the open streets. We saw many homes which are single rooms that need to be reached through treacherous lanes in slum areas where cooking, sleeping, and eating all occur in the same room. Drainage lines often flow just in front of the single room house and altercations over common water and toilets were everyday phenomena. There was darkness inside the rooms when it is broad sunlight outside; there was a room without a window where a mother and son live. An individual living in the interior forests in a thatched hut whose floors are reinforced with cow dung cakes is seen by the government as poor and in need of ‘development’. The government provides them with concrete houses to bring them to the mainstream. When we visited a tribal ‘patient’ at their home in interior Wayanad, Kerala, the concrete house was being used by the family as their cowshed, as they were not ‘comfortable’ with this kind of home. Drawing from his ethnography based in Kolkata, Ecks (2005) talks about the creation of ‘pharmaceutical citizenship’ wherein health programs view lack of access to psycho-pharmaceuticals by people suffering from depression as a state of ‘marginality’. Offering antidepressants to the poor people in distress thus is seen as a pathway to ‘development’. A view of development from the perspective of the majority results in a universal concept of care, which is at odds with the perspective of the care-receivers. In this article, we discuss the above issues by drawing on fieldwork done in two community mental health organisations situated in north-east India. The cases discussed here illustrate the care giving and care receiving processes, which were observed during a field study spanning 2 months.

One of the lingering questions that comes up in the care of the ‘homeless mentally ill’ is the identification of ‘mental illnesses.’ Researchers and activists in critical psychiatry, anthropology, and disability studies have questioned the psy- disciplines for their assumptions about mental illness. Typically, in mainstream psychology, mental illness is regarded as akin to physical illness and a definitive set of behavioural indicators – reflected in the diagnostic criteria of manuals such as the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the International Classification of Diseases (ICD) – is used to diagnose psychosocial disabilities. Thus, in the NGO, there was a tendency to rely on the medical model to identify symptoms of ‘mental illness’ in homeless people. Thus, in one case, the psychiatrist and psychologists in the NGO described the severity of psychopathology of a person who was found on the street; the distinguishing feature of this case was that the ‘rescued’ person had been found to be wearing 27 shirts. For the mental health practitioners, this was a clear indication of abnormality. A social worker at the NGO used this case to illustrate how they distinguished between the ‘homeless’ and the ‘homeless mentally ill’:

Talking to oneself, muttering, hallucinations, dishevelled appearance, taking food from garbage bins are indicators (of mental illness). The homeless will have clothes but will not wear unreasonable number of clothes, unlike the mentally ill.

Neither the psychologists nor the social workers acknowledged the perspective of the rescued individual, who explained that he was merely trying to safeguard his garments by wearing all of them, since he had no safe place to keep them. Clearly, this act was a survival strategy for the individual, and can therefore be seen as a strategy of self-care. This suggests a need for reformulation of the definition of self-care, a term which has particular import in disability, and is often used as a measure of the severity of disability. Yet, despite the logic of the act of wearing all of one’s clothes to safeguard them, for the caregivers – in this case, the mental health professionals – it remained an indication of pathology and deviance.

This spontaneity and lack of confusion on the part of the mental health workers in identifying mental illness and distinguishing between the ‘homeless’ and ‘homeless mentally ill’ reinforces the idea that the psy- disciplines have a conclusive set of algorithms to identify/diagnose psychosocial disabilities, analogous to diagnostic tests used in medical disciplines. Lack of humility to admit that human experiences are diverse and that psychiatry cannot be like cardiology has great repercussions for the care-receivers. Sometimes care becomes torture and leads to human rights violations as the following anecdote illustrates.

A middle aged man from Nepal was ‘rescued’ from the street by the NGO and brought to the shelter for homeless mentally ill. He was pleading with everyone to release him but in vain.

We are poor people from Nepal. We don’t have electricity in our home. I don’t have a telephone also in my home to inform my family that I am alive. I have a handicapped son aged 25 years; another one of my sons expired at the age of 25. His wife and children are being looked after by me. My life has been a very difficult journey; I am the only support to my family.

When he was asked as to why he was found on the streets, he explained the reason for his ‘homelessness’.

I worked in the lorry for 15 days and since I asked for my salary I was deserted by the driver. Then I was asking everyone the way, searching for the railway station. I was hungry and thirsty. That’s when these people came and took my photo. They told me that they would give me food, and so I consented to come along with them here. Now I am not being released. Why do they do this? I want to go home; my grandchildren would die of starvation without me. The authorities talked to me only once. Some say I will be freed in 2-3 days; some say it will take one month; others say one week. Someone said I will be released after the rains stop. And the residents here say that I will have to stay here life long, just like them. I am not able to sleep properly due to worries about my home and my grandchildren – they are so small, 10 and 11 years old. (cries inconsolably)

He was recruited as a potential client and incarcerated for more than 3 weeks only because he was found roaming on the street in a dishevelled state. Does this constitute ‘care’ or is it better read as violence and breach of the human rights of a person who might not even be having a psychosocial disability?

We argue that the act of care-giving doesn’t become care until and unless it is done without power dynamics being skewed towards the caregiver. The need of the person in distress becomes paramount in deciding what constitutes care. Writing on the logic of care in the context of diabetes, a disease which has a concrete existence as an objective physical disease unlike psychosocial disability, Mol (2006) argues that care works well when it is fluid and adaptable without fixed tasks for the care-givers, who need to adjust their intervention by carefully listening to the experiences of care-receivers. She calls for the incorporation of lived reality into scientific research. This flexibility becomes all the more critical and vital in the care of psychosocial disability because suffering of an individual is produced and co-produced by multiple psychosocial vectors including her/his social positioning which might be again rooted historically. There is always a dialectical tension between caregivers and care receivers as we try to fit them into a neat dichotomy. Instead of thinking of ‘care’ as something that is ‘received’ or ‘given’, we introduce the term ‘distress-sharing’ in the hope of moving beyond the hierarchy of caregivers and care receivers. When care divides, distress unites.

References
Davar, B.V. (2012). Legal frameworks for and against people with psychosocial disabilities. Economic and Political Weekly,47, (52),73-77.
Ecks, S. (2005). Pharmaceutical Citizenship: Antidepressant Marketing and the Promise of Demarginalization in India. Anthropology& Medicine,12: 3, 239 – 254.
Mol, A. (2006). The logic of care, New York: Routledge.
Patel,V. (2013). Legislating the right to care for mental Illness. Economic and Political Weekly,48(9), 123-131.

Bios:
Sudarshan R Kottai is a PhD candidate at the Department of Liberal Arts, IIT Hyderabad, Telangana, India. His PhD research focuses on mental health care policies and practices in the Indian context from critical perspectives. He is a licensed clinical psychologist who had a brief stint at the Department of Clinical Psychology, Lokopriya Gopinath Bordoloi Regional Institute of Mental Health, Tezpur, Assam as Clinical Psychologist before enrolling for PhD. His broad interests include psychotherapies with minority clients, mental health in the context of gender and sexualities, close relationships and its dysfunction, psychological emergencies and North-East India.

Shubha Ranganathan is Assistant Professor in the Department of Liberal Arts, Indian Institute of Technology Hyderabad. Her work is broadly located at the interface of culture, gender and psychology, particularly with reference to issues of women’s health and illness. Her research is interdisciplinary, drawing on the fields of medical anthropology, gender studies, and alternate paradigms within psychology such as critical psychology. She has been engaged in explorations of local practices of healing among marginalized groups, carrying out ethnographic studies of phenomena such as spirit possession, trance, and indigenous healing. In the area of mental health and psychosocial disabilities, her research is framed by critical perspectives, focuses on lived experiences and narratives of people presumed to be ‘abnormal’ or ‘different’.

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