Lily, a petite, pleasant young woman, enjoys life by the sea, in a village close to Mahabalipuram, Tamil Nadu. On closer observation, Lily may seem somewhat different from others around her; there is a visible social awkwardness. Her clinical diagnosis of intellectual disability and psychosis typically indicates an inhibited capacity to engage in usual tasks, socialise as others may and sustain meaningful relationships and conversations. She doesn’t speak much of her birth family or her past and has largely lived in an institute that provides mental health care. For the five-year period that we have known her at The Banyan, she has seemed to be content with her life but constrained by space, self-perceived boundaries and the lack of stimulating experiences to help advance her personal recovery. Her conversations have mostly remained the same, ‘Can we go to a movie’? ‘Shall we go to the beach’? There have been few other utterances.
Things are however, changing for Lily now. In a trial at The Banyan, supported by Grand Challenges, Canada, to address long terms needs of persons with mental health issues, Lily has moved to a new house and seems to have found newer opportunities and greater personal meaning.
‘You look good in saris’, ‘I like the shape of your nose’, ‘Can I bring you some coffee’ — the nature of our conversations have evolved, as Lily owns her new status with aplomb. She may continue to engage minimally with strangers but with known persons and a health coach and four other former clients from a mental health institute with whom she shares her house, she seems to experience kinship. In this group there are occasional disagreements and struggles but to a large extent, it is like any other family. In negotiating this process, Lily seems to have found a home, independence and a semblance of hope.
Enhancing core capabilities This housing intervention and a related sense of ontological security may have contributed significantly to Lily’s rediscovery of her identity and introduced a new cadence to her life. The process of social mixing, demonstrated by occasional transactions at shops, joint celebration of festivals, visits to places of worship, exchange of lunch and dinner invitations, and opportunities for individual expression in how she dressed or decorated her house have perhaps catalyzed these mental health gains. In Lily, we observe an achievement of a few core capabilities on the lines expressed by Martha Nussbaum which include the ability to stay safe and in good health, form affiliations and exercise personal discretion and will.
Lily’s attempts to normalise her mental illness have possibly motivated her to reassume control over her own life, and in doing so to use her imagination, creativity and intuition. She may forge bonds of companionship or befriend a pet, and while her dreams of a future may be singularly hers, she would yet be respected and treated as a member of a heterogeneous and culturally diverse society.
According to the World Health Organisation’s (WHO) Mental Health Atlas 2011, 38 per cent of people living in mental hospitals are estimated to have stayed there for a year or more. Long term care for persons with persistent forms of illness, if restricted to extended stays in hospitals or traditional rehabilitation homes, can be spiritless and lacking in vitality. Institutionalisation is not, and cannot be, the answer. However, the intention is not to deify de-institutionalisation and condemn institutional care; the perils of doing so are evident in the American mental health system where many persons in need of mental health care are often consigned to prison. Instead, we would argue for a non-binary perspective in responding to acute distress. >Persons with a mental illness need personal attention , security, and psychosocial care, all of which can be provided, if we have the will, in a range of settings including homes, community facilities and even humane, well regulated, small sized psychiatric hospitals, when required.
Even as we record positive outcomes and evidence from the trial to support this approach, the perils of independent or supported living cannot be ignored. Concerns around discrimination, exclusion and abuse are not unique to institutional care. Communities and its people can segregate, alienate and precipitate a sense of dyadic otherness, just as mental hospitals do. Consider the reaction of a conventional neighbourhood if an adverse event were to occur. As a society we are quick to judge, condemn and ostracise. Social order usually binds people to certain behaviours and practices where values and norms are handed down as legacy and any sign of deviance is questioned as an aberration. The tendency is to slip into the comfort of conformity, to distance oneself from ambiguity or from the complexities of engagement.
Will we use our discretion to defy this basic human instinct, and exercise our inner strength despite ourselves? This calls not just for empathy but for a sense of personal responsibility and obligation where we embrace differences and inspire human connection. There are indeed limitations to this approach. Some individuals may experience a higher need of support; few others may not be in a position to respond at all. Even so it is necessary to call for a greater display of social responsibility.
A progressive policy The trial launched at The Banyan may be able to offer a response to the crisis of long term care in India today. Estimates are that 3 per cent of India’s population, an estimated 40 million people, suffer from Severe Mental Disorders. A significant number of them languish for want of care, of space and of resources.
This World Mental Health week is an opportune time to revisit the >National Mental Health Policy released by the Government of India on October 10, 2014. The policy echoes a set of fine values such as equity and justice, integrated care, participatory and rights based approaches, good governance and effective delivery. While its objectives include bridging the treatment gap by promoting access to clinical and social care, the needs of vulnerable groups and challenges around institutional and long term care have also been identified as key areas of focus. Since the government’s progressive intent has been articulated in the policy, it is now time to assign resources — human, infrastructural and financial — to facilitate this paradigm shift and initiate programmes that promote social inclusion, participation and mobility. Since much of this work sits at the intersection of social welfare and health, it is important that convergence where required be initiated and the mantle of effective delivery be shared such that maximum gains are achieved for those who are so often marginalised.
(Keshav Desiraju has served as Health Secretary, GOI and is a Trustee with BALM. Vandana Gopikumar is co- founder of The Banyan and BALM and Professor of Social Work at TISS.)