Social Inclusion of persons with psychosocial disabilities: Bapu Trust experiences

Social Inclusion of persons with psychosocial disabilities: Bapu Trust experiences

Bhargavi V Davar

Paper to be read at the Department of Psychology, University of Allahabad,

Seminar on ‘Social Exclusion and Mental Health’, 21- 22 September 2014.

Social exclusion is not an unique identifier of any particular group, but is intersectional. Layers of vulnerability such as class, gender, ethnicity, sexuality, disability status, etc. add upto a civil, political, social and economic process of exclusion. Sometimes such exclusion may be fuelled by law. The social consequences of exclusion are numerous and may include complete isolation, and segregation . Such a person may be widely recognized as ‘not fit for society’ and not allowed any further opportunities in many spheres of life. There may be mental, cognitive and behavioural features of a person so victimised by the exclusion process, which may further compound the exclusion and victimize her further, resulting in a vicious cycle of marginalization and identity loss. For example, among Dalits or LGBT groups, people have talked about humiliation, loss of self esteem, fear and terror, trauma memories, loss of voice, and other psychosocial experiences of oppression and exclusion. The seriously disabling long term aspects of social oppression and trauma may include voice hearing, and other more extreme states. This understanding of social discrimination, and various exclusionary barriers adding upto additionally disabling psychosocial elements, is captured by recent definitions of ‘disability’. With new international treatises, such as the Convention on the Rights of Persons with Disabilities (UNCRPD), discrimination and exclusion are understood to be definitionally disabling.

From this point of view, persons living with mental health problems and psychosocial disabilities are often found at the crux of intersectional determinants of vulnerability and exclusion: gender, class, ethnicity, sexuality and disability status, to name a few. Further, they are victimized by different normative structures of society, including family perceptions, perceptions in work and employment, within the educational system, within scientific practices and within public policy (Davar and Ravindran, forthcoming, 2014).  They lose opportunities for integration and inclusion within the Development process. As a result, they may experience a trauma mentality internalizing the discrimination. However, the highest barrier to the inclusion of persons with mental illness in some Asian countries in the post colonial context such as India is law. Post colonial commonwealth nations face a peculiar situation wherein old penal legislations co-mingle with medical system to create certain medico-legal peculiarities and perversions in the support and care of people with psychosocial disabilities. Persons with mental health issues or psychosocial disabilities become subject to inhuman, degrading and torturous treatments; and to violence, abuse and exploitation. Some of these contexts and consequences of social exclusion by law is captured in my recent paper, ‘Legal frameworks’ (Davar, 2012): Here, I have argued that there are humungous legal barriers to the full inclusion of people with mental and psychosocial disabilities within society.

Simply presented, there are a variety of laws that are based on an assumption of ‘incapacity’ concerning ‘people of unsound mind’. The constitutions of some countries in Asia, such as India and the Philippines, also specifically mention that some persons are not ‘capable’, and therefore, cannot enjoy full citizenship status. In India, such persons have no legal standing, are not recognized as legitimate persons  and are considered to be ‘civil dead’. Social exclusion of persons with mental illness in India therefore has overwhelming legal sanction.

Against this scenario, Bapu trust, since 2004, has worked to bring about a humane discourse on mental health and inclusion of people with mental and psychosocial disabilities. In this paper, I describe one of our initiatives, Seher, a Comprehensive Urban Mental Health program, in Pune city.

We were introduced to the concept of ‘Inclusion’ by 2005, when the United Nations started sittings on developing the Convention on the Rights of Persons with Disabilities (UNCRPD). Inclusion was a concept already familiar in the disability discourse, but not so much found within mental health discourse. Disability itself as a notion was medically orientated in the 1990s and early 2000, and the question of disability identity, and the psychosocial development of people with disabilities was little known.

We were and are inspired by Article 19 of the UNCRPD: ‘Living independently and being included in communities’. This is the heart and spirit of the Convention. Bapu Trust has deeply internalized the meaning of this Article in its work in the slums. Article 19 confirms that a person with a disability has the right to live and be included in the community in all spheres of life. Further, the state has an obligation to provide a range of services in the community itself so that the person with disability is not forced to live in an institution or a place that is not their own choice. The state is also committed towards a process whereby, people living in institutions will be reintegrated into communities.

Vision and design of our urban community mental health program

Pune city has 550 ‘official’ slums, i.e., those which are provided a license by the Municipality. This license ensures that basic civic infrastructure, amenities like water and electricity, and government approved social services and schemes are provided. Officially, 42% of the Pune population (10 mn people) live in the slums. The Bapu Trust, Pune, works in a mere 2 of them, with a coverage of 50000 population, providing Comprehensive Urban Community Mental Health Services, and providing mental health care to around 450 clients every year. We see a wide spectrum of clients, starting from those with ‘stress’, ‘tension’, ‘pain’, ‘grief’ and other such distress experiences; to those in extreme states of health and mental health problems. The program started in 2004, when we provided traditional psychotherapies and medication, built on an individualistic model of client-therapist. Other than being culturally dissonant, this model replicated the power relationship, with net result of low client enrolment, high drop-out and high relapse. Such an individualistic model may work among middle class clients, but among low income communities, a collective sense of community and group exchanges are strong. The community and its collective resources were not enrolled into our program in the beginning. So levels of exclusion experienced by our clients was high, leading to violence, abuse and exploitation within their society.

The Vision of the Bapu program changed in 2008. At present the vision is not just to ‘treat mental illness’, but to create ‘emotionally sustainable communities’. Inclusion of people with high mental health support need is a core value and strategic practice of this program. Bapu Trust has been involved in ‘transforming communities for Inclusion’ in a targeted way since 2008. A matrix of non-formal and formal care services are provided, covering psycho-social aspects of cure, prevention and recovery; and social interventions for empowerment and inclusion. The program uses a wide set of psychological, arts based, body based and psychosocial interventions provided by trained grassroots staff. Among the low income communities found in Pune slums, we address the needs of marginalized groups by vulnerability and inter-sectionality (Davar 2012b).

Non-formal care is the community-based foundation on which more formal care provided by experts is built up. Non-formal care includes a range of specific psychosocial services at a level closest to people’s homes: including home visitors, peer supporters, support counsellors, field workers enabling a neighbourhood care system, family counselling, most interventions enabling social inclusion and stigma reduction. We are also active in providing awareness on mental health and well being for all people in the community. Our program staff go into the communities and have ‘corner meetings’ frequently, engaging and negotiating communities on caring for self, caring for others, especially vulnerable people. Negotiation with families and communities, teaching skills for practising peace, and creating a positive rumour about ‘mental health’ through word of mouth in the communities, are important aspects of our program. Such intimate communications with households also include positive messages about people with mental health problems. The psychosocial team is led and mentored by a clinical psychologist and an arts based therapist, who have broken down traditional psychological theories into day to day practices that can be used in low income communities.

Slums have ‘personalities’ based on a variety of civic, historical, social, cultural, spiritual, economic and other aspects. Contrary to our expectations that mental illness will be tremendously high in the low income communities where we work, many households seem to have resilience factors which buffer against psychosocial adversity, mental health issues and disabilities.  Some unlicensed slums (e.g. Ramnagar in Pune) did not transact on ‘social capital’ (a measure of human support systems available to a person) (MacKenzie, 2008; Welsh and Berry 2009). In our search for a slum to work, we experienced that slum as hostile: Migrants living in outlying areas sharing only a functional bond of employment as construction labour, often without families or relatives, having to compete for local resources and where the neighbor is a competitor for scarce resources. Where we work, people are long term settlers with well established family, social networks and support systems. Their ‘give and take’ with the neighbourhood, and various groups in the community, is very high. In our recent study on ‘happiness’ in the communities where we work, however, we found that people are happy because of, among other factors, the social capital that they receive in the community. We also researched on community support systems and found that social capital facilitates social inclusion of vulnerable people.  Our program uses these systemic features of the communities as strengths and draws upon them for multiplying emotional resources within communities. We call this within our program as creating a ‘circle of care’.

Binding social capital is a protective factor for people from psychosocial distress and disturbance. Social capital can include concepts of support, safety and trust, belonging and reciprocity. Where we work, we have found linked factors that may facilitate social capital and psychosocial resilience: Participation in organized groups, altruism, historical factors / lineage encouraging social cohesion, aspiration for social and spiritual service, access to development and a celebratory social-cultural environment from July-December through multi-cultural festivities.

In conclusion, the Bapu Trust work in the low income communities of Pune is suggestive of certain cultural and social methods and practices by which people take care of themselves and each other, mitigating the psychosocial consequences of poverty and enhancing a sense of belongingness and inclusion. Unlike the middle class, who tend to hide persons with disabilities in their homes behind closed doors, people in the slum communities are able to share with neighbours and relatives, and are able to seek help when informed about it.

Within the scope of Article 19 on inclusive communities, the Bapu Trust approach has a promising offer of using psychosocial and psychological theories to facilitate mental health conversations and building a culture of peaceful support for vulnerable people.

References

Davar, B. (2012). Legal Frameworks for and against people with psychosocial disabilities. Economic and Political weekly, XLV11(52): 123-131.

Davar, B.V. (2012b). ‘Gender and community mental health’. In Community Mental Health in India. Eds. Chavan, B.S, Gupta, N., Arun, P., Sidana, A. and Jadhav, S.  New Delhi: Jaypee Brothers Medical Publishers.

Davar, B.V. and Ravindran, S. (Editors). (2014, in press). Knowledges, institutions, identities: Gendering mental health. Oxford University Press, New Delhi.

McKenzie K, (2008). ‘Urbanisation, social capital and mental health’. Global Social Policy 8: 359-377

Welsh, JA and Berry, BL (2009). ‘Social capital and well being’. Paper presented at the Biennial HILDA Survey Research Conference, 16-17 July, 2009.

bvdresearch@gmail.com, bt.admfin09@gmail.com

020-65222442, 91-9823291989, www.baputrust.org, http://camhjournal.com

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