Stakeholders facilitating hope and empowerment amidst social suffering: A qualitative documentary analysis exploring lives of homeless women with mental illness

Abstract

Background:

Globally homeless mentally ill (HMI) individuals are considered one of the most vulnerable populations. An individual-centric, psychopathology-oriented focus of the existing mental health-care system limits the understanding of the HMI individuals through the disability lens overlooking their strengths and resilience that enable them to survive extremely hostile environments. Contemporary mental health research has embraced a paradigm shift that allows researchers to look beyond the predominant medical model to give precedence to a socio-culturally contexted and experientially firm understanding of human behaviour.

Aim:

Through the theoretical lens of social suffering, this article attempts to understand the lived experiences of the HMI women, the perspective of their caregivers and the standpoint of service providers in the context of homelessness and mental illness.

Methodology:

A documentary analysis as a qualitative research methodology has been used to reflect upon the concerns mentioned above. Following Figueroa’s approach to the analysis of audio-visual texts, the documentary Lapata Zindagi, directed by Radhika Lata Murthy, has woven the stories of four HMI women and their caregivers have been analysed. The two-phased analysis involved constructivist grounded theory procedures.

Results:

The methodological steps, rigour and the resulting categories (experience of social suffering associated with homelessness among HMI women, denial of care and rights within patriarchy, helplessness associated with the burden of caregiving and roles of NGO and community in building hope and empowerment) have been discussed through the lens of social suffering and how stakeholders might facilitate hope and empowerment amidst it.

Conclusion:

The article highlights the dire and urgent need to integrate mental health into primary health care and community-based intervention and move beyond clinical recovery to nurture ‘hope’ to enable recovery and empowerment for such marginalised populations.

Keywords

Documentary analysis qualitative research social suffering constructivist grounded theory homelessness and mental illness

Globally homelessness is considered a social evil. Homeless mentally ill (HMI) individuals are among the most vulnerable populations in the global health platform. Mental illness is regarded as both an antecedent and a consequence of homelessness. While not all homelessness stem from mental illness or result into it, but when co-occurring, the lack of resources makes it more difficult for HMI individuals to exit the vicious cycle of homelessness – severe mental illness. The Census of India in 2011 reported 1.77 million homeless in the country with an estimate of almost half a million HMI individuals (Goel & Chowdhury, 2017).

In a country of 1 billion, which has a mental illness prevalence of at least 5% (55 million), the number of psychiatrists is just above 3000 (Patel, 2009, p. 1759), creating a 90% treatment gap. There are only 43 government mental hospitals running with three psychiatrists per 1 million people, with psychologists and psychiatric social workers even scarcer. Of this, only 25% of the hospitals (11) are in rural India, where 70% of the population lives. Following the trends in higher income group countries, National Resource and Training Centre on Homelessness and Mental Illness (2003) estimated that even in such nations where resources are more accessible with lesser treatment gap and lesser population, 20%–25% of the homeless population suffers some form of severe mental illness (SMI) (Gopikumar et al., 2015, p. 45).

An individual-centric, universalistic psychopathology-oriented focus of the existing mental health-care system limits the understanding of the HMI individuals through the disability lens. It may stall the recognition and enhancement of the strengths and resilience of the HMI persons that enable them to survive the highly hostile environments. With an inadequate understanding of the context and the voice of this vulnerable section, there is little research in understanding the processes that might catalyse its rehabilitation or upward mobilisation.

Community mental health (CMH) promotes an inclusive approach towards mental health over the ‘symptom amelioration’ approach. It enables those who have been alienated and marginalised from society ‘to live as dignified, supported, and empowered lives as possible, preferably as contributing members of the community’ (Levine et al., 2005, p. 4). CMH emphasises the strengths one has as an individual and as a collective member of a community instead of their weaknesses, disabilities and pathology. Empowerment has remained pivotal to CMH ever since its inception. Empowerment is a paradigm or approach to CMH and a philosophy emphasising values of empowerment, community integration and social justice. The empowerment paradigm insists on understanding mental health as a construct beyond the medical model and aims to transform social conditions that maintain oppression (Evans et al., 2017). There is an innate need to transform the political and social institutions responsible for oppression to empower the oppressed from systemic social injustice. It is also needed to understand the complex interplay among the myriads of hierarchical structures that catalyse any marginalised population’s downward mobilisation.

The concept of suffering can be anchored to understand the perspectives of stakeholders who are being captivated in the situation due to lack of resources at the systemic level. Cassell (2004) defined suffering as a state of extreme distress related to events that threaten a person’s integrity. It occurs when the person perceives impending destruction. It continues until the threat fades away, or the individual restores his integrity. Suffering extends beyond the physical pain of the person to all other dimensions of his personhood. Suffering is ultimately a personal matter – something whose presence can be realised only by the sufferer.

In their seminal work on social suffering, Kleinman et al. (1997) conceptualised social suffering as the ‘devastating injuries’ that social forces can thrust upon individuals. According to Kleinman et al. (1997), ‘Social suffering results from what political, economic, and institutional power does to people and, reciprocally, from how these forms of power themselves influence responses to social problems.’ (p. ix). In the context of HMI individuals, the framework of social-suffering thus enables us to understand how the interplay of various socio-political and socio-economic forces initiated the experience of suffering aggravated by the apathy of various social institutions, including health-care bureaucracies.

As already mentioned, looking at the problem of homelessness-SMI only through the medical lens might be unwise. Social suffering as a framework helps by collapsing the categories such as health-care, social or economic factors or determinants (on which mental health outcomes are usually regressed using a statistics-driven biomedical model). It thereby provides a platform to understand the issues of exclusion, alienation, marginalisation or dehumanisation within the hierarchies of class, gender, caste, religion or geographical region holistically.

Contemporary mental health research has embraced a paradigm shift that enables researchers to look beyond the predominant medical model to give precedence to a socio-culturally contexted and experientially firm understanding of human behaviour. Due to its amenability and the priority it gives to the participants’ voices, this paradigm shift often urges mental health researchers to use qualitative research methodology. Besides the popular methods, analysis of audio-visual materials such as documentaries may prove to be a meaningful methodology to study people’s experiences in different mental health-related contexts. A documentary analysis as a qualitative research methodology can reflect upon the concerns mentioned above through the theoretical lens of ‘social suffering’ to understand the victims and various stakeholders in the given context.

The documentary Lapata Zindagi, directed by Radhika Lata Murthy (detailed in the methodology section), has woven the stories of few such HMI women and their caregivers who have continually been the target of victimisation within the loopholes and apathy of the social structure. It documented the blurred boundary between patients and their caregivers. Ultimately, both became the victims, sometimes because of the lack of systems and sometimes for structural violence like poverty and the conjecture at which suffering becomes a shared experience beyond being personal. Through the theoretical lens of social suffering, adopting the methodology of documentary analysis from a perspective of qualitative research, this article attempts to understand-

(1) The lived experiences of the HMI women

(2) The perspective of caregivers of the HMI women

(3) The standpoint of service providers in the context of homelessness and mental illness.

Qualitative documentary analysis: The AVO-approach

Figueroa (2008) introduced an innovative use of qualitative methodology to develop insights about human social worlds by analysing audio-visual materials, including documentaries that might depict people’s issues or problems in real-time. The ‘audio-visual data as an object of analysis’ (AVO) approach that Figueroa endorses assumes the audio-visual material (a collection of narratives such as conversations, interviews, other sounds and visuals) to be a piece of reality constructed through the medium of a film, a documentary or a television programme (Viswambharan & Priya, 2016). Figueroa (2008, pp. 3–4) emphasises that the ‘audio-visual material is the result of social interactions between, for instance, journalists, camera-people, editors, etc.’

Viswambharan and Priya (2016) highlighted that the AVO-approach bases itself on the following three critical methodological considerations:

(a) Emphasising researchers’ epistemological standpoint and interpretive framework: The AVO-approach closely follows the basic tenets of new paradigms of qualitative research (Denzin & Lincoln, 2011 as cited in Viswambharan & Priya, 2016). It provides the researcher with a space to explicate their vantage points, mainly epistemological position and interpretive frameworks. This further aids analysis besides accentuating the socio-historical and socio-cultural context in which the audio-visual material was generated.

(b) Considering the documentary as a ‘whole’ for initial data analysis: Figuera’s approach let the researcher consider the documentary as a whole to understand the context in which the events are situated, the film-maker’s stance and the broad themes or ‘macro-propositions’ that emerge from this.

(c) Use of grounded theory for data analysis: The broad themes or macro-propositions are further developed or refined with the help of the coding procedures (initial, focused and axial coding) of constructivist grounded theory (CGT). As identified and explained by Charmaz (1995, 2000, 2006, 2014) CGT method helps the researcher ‘unravel the nuances of human experiences or worldviews within their relational, cultural and socio-political contexts’ (Priya, 2019, p. 402).

Ethics

As per the Indian Council of Medical Research (2018), the condition for consent can be waivered when the research data is available in a public domain (in this case on YouTube) (Mathur, 2018, p. 9). Despite the condition mentioned above, since the documentary’s copyright is with the director and the producers, the authors have obtained permission from them, respectively, through personal communications for using it in a research article (Murthy, personal communication, October 2015).

Lapata Zindagi: A brief overview of the documentary

Director Radhika Lata Murthy, a Film and Television Institute of India (FTII), Pune graduate, got an invitation for directing the documentary from Dr Hamid Dabolkar, a Pune based Psychiatrist. After helping to set up a 20-bed ward for a long stay of mentally ill patients at Regional Mental Hospital at Yerawada, Dr Hamid Dabholkar felt the need to tell the story of this vulnerable group who are often homeless. He, along with Dr Sudipto Chatterjee, one of the coordinators of Inclusion and Empowerment of People with Severe Mental Disorders (INCENSE), has given a snapshot of how vulnerable the HMI persons are in Pune through this documentary. It has been taken up as part of the INCENSE programme funded by a Tata trust.

The 32-minute documentary (released on 30th May 2015) tracks the tale of four women (Nazma, Madhu, Indu and Chhabu Bai) who were ‘lost’ and wandered to other cities. While two of them were eventually reunited with their families, the other two had to be taken to a women’s care home run by an NGO, Maher, in Pune. Lapata Zindagi brings together the stories of four of these women who have experienced the severe adversities, risks, apathy and exclusion of being homeless and mentally unwell and also of people who have responded with and without compassion. The film is also a testament to their incredible resilience and ability in moving on and a chronicle of their hopes, uncertainties and aspirations in rebuilding the ‘Lapata Zindagi’ (lost life).

Methodology

The AVO-approach to documentary analysis (Figueroa, 2008) is based on the social-constructionist paradigm of qualitative research. It involves the process and the research findings to be a co-construction by an involved interpretation of audio-visual material. In the following sections, a reflection of the researcher’s epistemological standpoint would be provided, followed by the film-maker’s perspective about the documentary. The procedure adopted for the two-phase analysis of the documentary is illustrated in the next section.

Researchers’ epistemological stance

With the motivation to co-construct the experiences of the HMI women and relevant stakeholders, the social constructionist epistemological position was adopted for the current analysis. As a paradigm, social constructionism has the scope to provide space to the voice of the ‘researched’ within their socio-historical and cultural context (Priya, 2012; Sampson, 1993). Guba and Lincoln (1994) posited that this paradigmatic standpoint gives the researcher the role of an advocate, activist, participant and facilitator simultaneously, leading to an effective co-construction of reality. The researcher mirrors the voice of a passionate participant (Lincoln, 1991), ‘actively engaged in facilitating the “multi-voice” reconstruction’ (Guba & Lincoln, 1994).

Thus, audio-visual texts are no longer an objective, neutral way of information conveying through the camera, microphone and other gadgets. Instead, these are now voices of these HMI women and the stakeholders generated through the film-maker’s perspective and analysed through the epistemological, methodological and theoretical stances taken up by the researcher (Figueora, 2008).

Film-maker’s perspective

According to the approach followed for analysis, it is assumed that the documentary was a product of the film-maker’s perspective on mental illness and homelessness, an understanding of her professional and ideological standpoint. When questioned about it, the director was prompt and clear about her perspectives –

I have seen mentally ill people wandering about on city streets. Their stories are often bizarre, always moving and reflect different aspects of the human condition. I feel that the subject of Homeless Mentally ill people is highly sensitive – because of the vulnerability of the patients as well as widespread apathy, fear and lack of systems to deal with this issue in society. I feel that talking about this subject in all possible ways is crucial to mainstreaming it and creating and strengthening mental health systems in our country. (Murthy, personal communication, October 2015)

She reflects on the struggles she experienced as a film-maker in conceptualising the documentary

My challenge as a film-maker was to find a balance between the harshness of the patients’ lives, constantly blaming society and showcasing the wonderful and dedicated work that many people and organizations have been doing, against all the odds. Finally, the aim was to sensitize and hope people will not look away. (Murthy, personal communication, October 2015)

She considers that documentary films can be a medium to create awareness at the mass level; however, that depends on the movie’s distribution across the grass-root level to the peak of the system’s hierarchy. The message she intended to send through her creation was that ‘there is the need for a combined effort by all stakeholders to create a holistic mental health care system’. She believes collective will, creating a significant mental health policy that considers, and speaks out more openly and actively about mental illness, opening up spaces like mental hospitals and psychiatric wards to media and public access might help reduce stigma and mainstream the issue. She feels the need to have community-based outreach programmes that would reach out to affected families at their homes, at the grass-roots levels, rather than waiting for them to reach the inadequate mental health-care facilities. She hopes it might help in preventing situations from worsening to the point of abandonment and homelessness.

Analysis of narrative using an AVO approach

The analysis process consists of two parts. First, to conceptualise the socio-historical contexts of the events and to develop macro-propositions or topics (broader themes about the phenomenon under study), the audio-visual material was watched multiple times (Figueroa, 2008). As mentioned earlier, the interpretative framework for the present analysis has been that of ‘social suffering’ and its implication on mental health as posited by Kleinman et al. (1997). Watching and re-watching the documentary through the framework of social suffering with the researcher’s epistemological position resulted in the following macro-propositions.

(a) Experiences of social-suffering of the HMI women: Experiencing being dehumanised due to the apathy and indifference of various stakeholders.

(b) Role of caregivers: The bi-directional paradoxical role of caregivers as causing distress to the HMI women as well as the caregivers experiencing the brunt of caregiving individuals with chronic SMI.

(c) Lack of systemic resources: The ironical role of the health care system that has been developed to respond to the illness-related suffering worsens it with apathy and lack of awareness.

(d) Role of NGO and community: While in a broader context, the community has shown apathy and indifference, it is the community that has played a pivotal role in redeveloping hope and resilience among the victims and their caregivers.

As the second step, the macro-propositions were then further refined through the process of constructivist grounded theory (CGT) analysis (Table 1). In this step, the smaller units of the audio-visual texts had to be analysed through initial, focused and axial coding procedures of CGT (Charmaz, 2000, 2014) to locate the exemplars and refine the previously derived macro-propositions. An incident-by-incident coding procedure had been used. The qualitative data consisted of narratives from these incidents and scenes that included interviews with the four HMI women, caregivers, psychiatrists, psychiatric social worker, community health workers and NGO personnel. Full transcripts of the documentary were considered as the narratives, which were used as exemplars to the codes or final categories (Pidgeon & Henwood, 1997).

Table 1.

Associations between initial macro-positions and final categories.

Macro-position		Final categories
Experiences of social-suffering of the HMI women		Experience of Social Suffering associated with homelessness among HMI women
Role of caregivers		Denial of care and rights within patriarchy
Lack of systemic resources		Helplessness associated with the burden of caregiving
Role of NGO and community		‘Being nobody’ as a street-dweller for the system
Role of NGO and community		Role of NGO and community in building hope and empowerment

The CGT analysis of the narratives resulted in the following categories (and definitions)

Experiences of social suffering associated with homelessness among HMI women: Feeling dehumanised, humiliated or both on being physically, sexually or emotionally tormented due to being vulnerable as a homeless woman.

Denial of care and rights within patriarchy: Feeling immensely betrayed and dejected on losing significant relationships or denial of rights to shelter, treatment and care by the family members.

Helplessness associated with the burden of caregiving: Feeling exhausted, burned out and emotionally drained as primary caregiver to individuals with SMI due to resourcelessness at multiple levels.

‘Being nobody’ as a street-dweller for the system: Experiencing the distress of ‘being uncared for’ due to lack of awareness about SMI and apathy and negligence at systemic and structural levels.

Role of NGO and community in building hope and empowerment: The sense of developing hope and empowerment being facilitated by the NGOs and community on being provided with resources and unconditional acceptance.

Results

Experiences of social suffering associated with homelessness among HMI women

The experiences the HMI women survived on the streets induced distress and agony in them that increased their suffering over and above the burden of homelessness and mental illness. Of the four HMI women that the documentary filmed, Nazma from Kolkata ended up at Pune while leaving home on a symptomatic spree. She recollected her experience of being victimised on the streets of Pune.

My bags and money got stolen, what do I do all alone? I didn’t beg anyone for money. Then I came to a market. . .Then a guy from nowhere started yelling, looking at my dirty clothes. He beat me and drove me away. That day I got a lot of beating. (Nazma, an HMI woman)

Their vulnerabilities as HMI ‘women’ forced them to learn strategies to survive the inordinately hostile environments. Indu disclosed the strategies that she adapted.

There’s no fear when you are awake. You are only afraid when you sleep. There were tea and snack stalls. They gave me food to eat. There was a crowd there till 11 at night. Then after 11 stay awake. Living on the edge. . . that’s what it was like, on the streets. (Indu, an HMI woman)

Denial of care and rights within patriarchy

The women experienced being dehumanised and deprived due to the brunt of SMI through the associated losses and stigma. A relative of one of the HMI women talked about his experience of seeing her suffer the symptoms of SMI.

She used to wander in the area around our house. The children didn’t want her to come close to them or keep in contact with her. Actually, she was wandering because of her mental problem, but that’s nothing to them. They don’t want to know anything about her. (A relative of an HMI woman).

Similarly, Madhu, one of the four HMI women, could reflect on her experiences when she was symptomatic.

Oh! I was total crazy! If anyone saw me, I looked quite dangerous. No one would even touch me. Holy men used to strike me with feathers, make me drink holy water, tie holy threads and pendants on me, make me eat holy ash. Nothing made any sense. Voices talked in my head, and my bed shook, the plate with my food moved, a lot of things happened to me. It got too much, and I ran from home in fright. (Madhu, an HMI woman)

They also felt immensely betrayed and dejected on denial of rights to shelter, treatment and care by the family members. Indu was thrown out of home by her brother-in-law, probably while she was symptomatic, ‘I left as soon as my brother-in-law threw me out. I left immediately, didn’t stay there. (I came to stay) on the street’. While Indu reported this traumatic experience without a flicker of her eyes, with a ‘blank’, my eyes trained in the medical model, at first analysed this to be a distinct look of symptomatic-blunted affect denoting negative symptoms of schizophrenia. Nevertheless, I wondered if she has deliberately cut off all her emotional ties with the incident to forget the suffering it inflicted upon her!

Often, the uncaring attitude of the caregiver towards them aggravated their suffering further. Though Chhabu Bai’s brother, who himself was suffering SMI, delegated Chhabu’s son the task of getting her medicine from the doctor, it did not happen accordingly, ‘I showed her son, my nephew where to get her medicines from. He got them for a few months, and later there was a break, for a couple of months, and her tension increased.’ (Brother of Chhabu Bai).

Helplessness associated with the burden of caregiving

Caregiving for chronic illnesses has often been researched. However, the plights of taking care of an individual with SMI chronically are burdensome and exhaust the caregivers from different dimensions. Sometimes there are multiple patients in the family. Chhabu Bai’s brother recollected his experience of caregiving Chhabu, their mother, while suffering SMI symptoms himself.

The first person to have a problem was Chhabu bai. Her treatment began at the mental health hospital. And I did my best to get her medicines regularly. Then my mother started showing the same symptoms, and I got medicine for both of them. Then even I began having the same problem, everyone was ill. It was like the whole family was devastated. Then my mother died, jumped in a well. Chhabu’s medicine continued. People started taunting me about always being occupied with my sister. When she got lost, my eyes searched for her everywhere, desperately. My main focus was that she come back home. [his frowning brows and deep exhalation, expressed his frustration and helplessness] (Brother of Chhabu Bai)

The uncertainty and lack of information about mental illness and its course often created fear among the caregivers.

My wife, she was obviously worried if the children were in any danger. Even I was worried, but I told her that being alert was the only way, if we all wanted to live together. But managing two mentally ill people at once in the same house had become a big problem for us (Relative of an HMI woman)

The caregivers often take care of the individual with SMI at the cost of their bread and butter. The ageing mother of one such woman with SMI reflected,

I think she did it on purpose. Not on purpose, but she wandered on the streets, hit me if I told her to have a bath, throw stones, yell loudly in the house, even at people outside. There was food on the plate only if I work. So, it takes up all the time. I don’t complain, but when I also had trouble, they prescribed medication for me too. (Mother of an HMI woman)

Apart from these, often, the caregivers also experience a societal stigma that secludes the families.

‘Being nobody’ as a street-dweller for the system

Experiences of the distress on ‘being uncared for’ due to lack of awareness about SMI and apathy and negligence at systemic and structural level exacerbate the suffering manifolds. Inaccessibility of treatment-related resources is a significant concern. System induced suffering starts to stem from there. The service providers identify the problems the caregivers experience due to this.

At one point in time, the family is forced to decide between taking care of the mentally ill person or the rest of the family. It is very harsh on many families to make such a choice. But since we have no system, we see those who become homeless often come from rural or poor backgrounds where the caretaking capacity is exhausted. Even in cities, people become homeless because, whatever can be called India’s mental health system- 70-80% is in the private sector. One has to pay for doctors and buy medicine. These being long term illnesses, someone from a poor family cannot sustain taking the treatment over a long time. (Dr Sudipto Chatterjee, Psychiatrist, Parivartan Trust).

He further highlights the inaccessibility of resources due to negligence and apathy at the systemic level.

Unfortunately, in India, the reality is that we don’t have a system which is available, accessible, affordable to people, and that is the biggest single reason why people are denying treatment. They cannot access treatment, and the consequence of not having the treatment on time is homelessness when the capacity of the family to care for the person is completely exhausted. (Dr Sudipto Chatterjee, Psychiatrist, Parivartan Trust)

Another service provider, working closely with this population, focused on India’s 90% treatment gap.

We are actually serving 10-15% of the people suffering from mental illness. The rest is unaccounted for. Either they manage on themselves, or they end up on the streets. That’s the treatment gap we see. How do people end up on the streets with a mental health problem without the system being irresponsive to it? (Dr Amit Nulkar, Psychiatrist, Parivartan Trust)

Loopholes at the systemic level make the situations worse.

You can’t admit these patients directly in the mental hospital. According to the mental health act (1987), you have to do it through the police, present the patient in front of the court. Then the court gives an order to admit the patient in the mental hospital (Dr Hamid Dabolkar, Psychiatrist, Parivartan Trust).

The service providers also highlight the struggle they experience in HMI individuals’ restitution, mainly because of the families’ lack of awareness. To have a more inclusive system in place, Dr Dabolkar reflects on his insights,

Systems need to be created, where an effective, affordable, scientific treatment will be available at the earliest and close to home. It is just not enough to just work with HMI people. Zero- tolerance- that is the statement that we, as a society, should be able to make one day. Just as we don’t see a person with a fit, a heart attack or an accident lying on the streets, we won’t see a mentally ill person wandering the streets in our society. (Dr Hamid Dabolkar, Psychiatrist, Parivartan Trust)

Role of NGO and community in building hope and empowerment

The documentary highlights the changes that the NGO or an involved community could bring in these women’s lives by rescuing them from the streets, accepting them unconditionally, and providing them with the essential resources. A social worker reflected how they initiate the process, ‘Our Community Health Workers go out on the street and look for homeless mentally ill individuals and start building a rapport with them’. (Shamika Bapat, Social Worker, INCENSE). One such Community Health Worker reflected on her experience of rescuing Chhabu Bai from the streets, ‘Urmila and I gave her (Chhabu) a bath behind those bushes. We cut away her dreadlocks and various threads, full of lice, tied around her hands and neck.’ (A Community Health Worker).

Following being rescued,

We shift them to a secure place where their basic needs and treatment will be taken care of. Instead of setting up a parallel system, we decided to ensure that the designated government agencies took up their responsibility. We decided to work together with the Regional Mental Hospital, Yerwada. (Dr Hamid Dabolkar, Psychiatrist, Parivartan Trust)

Despite the apathy shown by the community, and family members, with some yet not negligible help from the community members and experts in the fields.

No one in the village ridiculed us because she was mad. We got a lot of support from the community. When I had lost my sense, the whole village took me to the police and got me admitted to the hospital with an order from the court. They did the same for her when she was unwell. We got a lot of support from our village. (Brother of Chhabu Bai)

The concern and care of the involved community members often made it possible for them to get access to treatment at the very least.

She used to just lie there and not let anyone come near her. She swore and cursed, so no one went near her. I used to say ‘Chhabu dear, eat this’ and she would say ‘eat it yourself!’ I would say, ‘I will. Just eat a little bit’ This went on, and her health deteriorated like anything. We got her admitted to the hospital. First him, and then her. (A Neighbour of Chhabu Bai)

The families’ paradoxical role as being apathetic to the person’s suffering is just one side of the coin. On the other hand, not under any given circumstances, the family members would give up on their relatives suffering from SMI.

Abandoning a family member just because they are mentally unstable is not an option for me. Bow till she is alive, taking care of her medication, taking her to the hospital, all this is my job. It must be done. (Brother of Chhabu Bai)

The care and concern showed by the community, family members and the service providers often enabled the HMI individuals to exit the vicious cycle of homelessness and SMI and look forward to a future beyond the life and identity of being an HMI person. As Madhu expressed herself, ‘I’ll get married; will work. You don’t get chances every time in life. I like everything, but if only my mind would work with me.’ (Madhu, an HMI woman).

Similarly, beyond her lived experience of homelessness-SMI, Nazma now looked forward to going back home –

I want to go home. I will look after my child. Now I’m no longer young. I don’t want to just help out. I want to work hard, earn money, and educate my daughter, and later if she is lucky, she will get married. (Nazma, an HMI woman)

The documentary, towards the end, chose to focus on the ‘exit’ of Nazma from the vicious cycle of homelessness and SMI when her mother came to Pune to fetch her back. Nazma is reconnecting with her family. Ultimately, her restitution brings up a wave of happiness and maybe hope among her fellow residents. They expressed their solidarity and mutual understanding, and empathy through prayer while Nazma left for the station. ‘Let everyone be happy. God, this is our only prayer to you. Give us the sense to think good thoughts. Let there be no place for bad thoughts. Let your support always be there with me’.

Discussion

Social suffering as a framework collapses the categories such as health-care, social or economic factors or determinants (on which mental health outcomes are usually regressed using a statistics-driven biomedical model), thereby providing a platform to understand the issues of exclusion, alienation, marginalisation or dehumanisation within the hierarchies of class, gender, caste, religion or geographical region holistically. As depicted in the documentary, the HMI women’s multidimensional experiences would be discussed below through the interpretative framework of social suffering to understand their lived experiences as shaped by the socio-cultural and socio-economic hierarchies.

Experience of social suffering associated with homelessness among HMI women

The homeless life of individuals with SMI makes them vulnerable because of the suffering due to a lack of shelter, food and clothing, making one suffer extreme dehumanisation and humiliation on being physically, sexually and emotionally tormented. All the HMI women whose experiences were documented here were actively symptomatic during their stay on the streets; in most scenarios, they could not protect themselves. The participants recollected their experiences of physical assaults where they lost all their possessions to the goons. They remembered being teased and taunted and sometimes beaten by the community members or harassed by police.

Though life on the streets was devoid of all the fundamental amenities that one needs to survive, these women survived homelessness and SMI and myriads of physical, sexual or emotional assaults. Indu shared that the demands of living on the streets compelled her to learn strategies (like identifying safe zones, food providers) to survive homelessness and the vulnerabilities of being a ‘woman’. Bonugli (2013) noted that such hyper-vigilance, scanning of the environment and avoiding places that deemed dangerous helped homeless women with SMI to survive on the streets. Researchers often turn a blind eye to identify the strengths and resilience or creative strategies the HMI individuals adapt to survive the inordinately hostile environments with an inherent focus to locate what all are wrong with them (Koegel, 1992).

Denial of care and rights within patriarchy

Goldberg (1979) described patriarchy as a system of organisation (political, economic, financial, religious or social) where the hierarchical power positions were dominated overwhelmingly by men. The brunt of these hierarchies sustained by male dominance can be felt between two women, exercised on the son by the father, the son on the elderly parents, the boss on the employee and likewise. Hunnicutt (2009) identified that patriarchal systems and relations exist both at the macro-level (government, bureaucracies, law, economy) and micro-level (families, communities, organisations). Indeed, gender hierarchies organise the patriarchal power processes within these levels, but it is mediated by race, age, class, sexuality and religion that sustain the distribution of power and privilege between males and females. It is not a surprise that this hierarchical power process of patriarchy would victimise a socio-economically vulnerable and alienated population (Moorkath et al., 2018). Echoed through the HMI women’s voices and those who witnessed them suffer were the intense distress and agony they experienced when they (HMI women) were symptomatic but untreated. Their experiences of feeling dehumanised due to the brunt of losses and stigma associated with SMI aggravated their suffering. The lack of awareness about mental illness made it difficult for caregivers to understand the signs of SMI. Often, the ‘callous’ attitude of the caregivers due to the adequate knowledge of SMI and its treatment made the HMI individual feel ‘being uncared for’ as it happened with Indu or Chhabu Bai. Non-adherence due to caregivers’ apathy and non-compliance due to their lack of awareness disrupted the pharmacological treatment even if it was started. This almost always resulted in multiple relapses.

As the documentary highlighted, the gaps in information at grass-root levels are usually filled up by misinformation through mainstream media, particularly movies. Radhika Murthy showed in her film clippings from various ‘Bollywood Movies’ where the protagonists’ mental illness is ridiculed or shown through a lens of ‘comedy’ or seeking indigenous treatment. Information that comes through mainstream media, particularly movies, is layered with strong emotional overtones with a durable grip on human minds. It creates ‘common’ consciousness and agency but with dire social consequences. The use of derogatory terms like pagal (mad) for individuals with mental illness or pagalkhana for hospitals treating mental illness possibly shapes the lens through which society ‘others’ the one who is suffering the illness (Bhattacharya et al., 2020). Similarly, the legal discourse around mental illness makes it a subject of fear and apprehension for the common people.

Helplessness associated with the burden of caregiving

Kleinman (2010) posited how ‘pain and suffering of a disorder is not limited to the individual sufferer but extends at times to the family and social network’ (p. 1519). The HMI individuals’ primary caregivers perceived their responsibility as a burden when they felt they were exhausted of the resources to care for the ill. As Chhabu Bai’s brother explained, with more than one person affected with SMI, the whole family structure collapsed with no one to take care of the other. Being a family member of a person with SMI is perceived as burdensome because of the disruptions it causes within the family dynamics. As the relative of one HMI women experienced distress, it caused him to keep the family together under the same roof. Barnable and colleagues identified that ‘disturbed relations in the family manifested themselves as interpersonal conflicts due to stress, frustration, and disagreement over care issues’ (as cited in Wirsén et al., 2017).

Poverty is one of the leading contributors to poor living conditions, lack of adequate housing, education, sanitation and nutrition, causing and maintaining poor health conditions, both physical and psychological (Read, 2010). Poor cannot afford to stay ill since they survive on their daily wages mostly. As the elderly mother of an HMI woman experienced, she had neither the time nor the financial condition to stay back home to take care of her ailing daughter. They spend out of the pocket to meet the treatment need, which worsens due to lack of access to adequate resources, including treatment facility, leading further to stress, deteriorating quality of life, diminished well-being which again keeps them stuck in the poverty-ill health nexus (Gopikumar et al., 2015) and makes the caregiving process a burden to the caregivers.

‘Being nobody’ as a street-dweller for the system

Kleinman (2010) further highlighted that the ‘social institutions, such as health-care bureaucracies that are developed to respond to suffering could make the suffering worse’ (p. 1519). The lack of essential socio-economic resources or their inaccessibility often exacerbated the existing suffering. The unavailability of mental illness treatment facilities at the grass-roots level makes the individuals withdraw from the treatment after some time. In the rural areas, people neither have the time or life situation to travel for hours to get ‘free medicine’ from the Government hospitals that would probably be located miles away from their villages. Similarly, in the cities, the privatisation of the medical sector in the neoliberal globalisation era might have increased the ‘number’ of resource availability. However, accessibility remains an outstretched idea because corporatised medical facilities do not come cheap.

The 90% treatment gap, apathy and negligence at various levels due to the lack of awareness among various stakeholders, including family members, government institutions, the primary health care system or the community, complicates the challenges further. Moorkath et al. (2019) highlighted that while Indian families have a high threshold of acceptance for the ‘physically ill’ in the family, the situation rampantly changes when individuals are diagnosed with mental illness, particularly women. Lack of awareness, the stigma around mental illness, taboo with homelessness force the families to deny the necessary care, shelter and acceptance that this population deserve. Thus, reinstatement does not work well in many situations, even when the families could be traced back following homelessness. This has also been a concern for the service-providers widely.

The service providers identify the need to reshape the existing system to be more inclusive where mental illness would be perceived and treated as any other forms of illness, but not as a disability that creates the discourse of ‘othering’ and, therefore, the stigma around mental illness. Moreover, for that, the stakeholders need to own up to their responsibilities and execute them.

Role of NGO and community in building hope and empowerment

The extreme forms of social alienation and exclusion that the HMI individuals experience as a marginalised population makes it even more difficult for them to overcome because of the neo-liberal globalisation era that commodifies human abilities, skills or experiences of mental health as marketable products (Bhatia, 2018; Bhatia & Priya, 2018; Mills, 2018; Pandey et al., 2020; Sharma & Priya, 2020). Charmaz (2020) posited that ‘Dominant perspectives, policies, and practices affect experiencing stigma and exclusion’ (p. 21).

Cassell (2004) pointed out that suffering becomes disastrous when the reintegration process stops. In restoring integrity, people enlarge themselves in response to the damage so that they grow rather than being reduced to the loss. This is how they recover from the loss and develop resilience. However, the sole responsibility of rebuilding does not lie upon the sufferer only. In an inclusive community, responsible stakeholders and primary caregivers often have the power to pull the individual back from the edge towards a life that they deserve. The empowerment opportunities that the Parivartan Trust and another NGO called Maher is giving them back their lost sense of self-esteem and self-confidence. They identify the need to empower themselves and look hopefully towards a future where they can take care of their own and fulfil their responsibilities towards their significant others.

Conclusion

HMI individuals are one of the most vulnerable populations on the global health platform. An individual-centric, psychopathology-oriented focus of the existing medical system limits the understanding of the HMI individuals through the disability lens. Homelessness is primarily a social problem. Even when the homeless person gets the diagnosis of SMI, it is unwise to overlook the socio-politico-economic context. At par with the medicalisation trend of neoliberal society (that we are becoming increasingly), service approaches frequently identify people with mental illness as mental health-care services consumers. However, instead of identifying and building upon the strengths and resilience in a marginalised population like HMI persons, service approaches have become pathology-centric. Such individualised responsibility for illness and recovery, disguised as freedom and agency, has exacerbated the existing marginalisation and alienation. They end up fighting alone for services, amenities and welfare. In a developing country like India, the struggle to avail the barely enough resources to survive for those living with the double burden of mental illness and homelessness is superimposed upon the pre-existing battle for a healthier physical, social and psychological and economic existence. Through ‘Lapata Zindagi’ by giving voices to the unheard stories of Nazma, Madhu, Indu and Chhabu and their caregivers, Radhika Murthy humanises their experiences beyond the medical lens. It also highlights the dire and urgent need to integrate mental health into primary health care and community-based intervention as has been done in some places in India like Kolkata (West Bengal) (Chatterjee & Roy, 2017) and Kerala (R Kottai & Ranganathan, 2020). It might help to nurture ‘hope’ to enable recovery and empowerment for such marginalised populations.

Footnotes

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Prama Bhattacharya

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