Institutions

Out of the four walls

Print edition : September 16, 2016

A 13-year-old aspiring dancer in Kumbharwada, the potters' colony in Dharavi, is chained by his family, which claims that he is mentally ill and steals from his neighbours. Photo: Shantanu Das

Care for the mentally ill should look beyond the “madhouse” and towards inclusive communities with a place for persons with psychosocial disabilities.

ARMAAN ALKAZI, a researcher in mental health, narrates his experience of Ishwar Sankalpa, an organisation that encourages community interventions for persons perceived to have mental disorders:

“We go looking for Kuku Didi behind a dilapidated wall in a densely populated part of southern Kolkata. Kallu, my guide and translator, leads me to a small clearing, with jhuggis on one side and a decaying two-storey building on the other. The ground is slightly charred and awash with plastic bags. We find Kuku Didi napping on the first-floor landing, and Kallu is forced to wake her up. She is shy as Kallu goes through the process of ‘checking in’—asking about how she eats, her medication, whether she manages to collect enough plastic bags to get by. She nods but does not speak, reserving a generous half smile for me. Kuku Didi used to live in the jhuggi cluster next door. After her husband died, she fell into a depression, and her son with his wife insisted that there was no space in the house for her. Suddenly, she was homeless and severely ill.

“After she was identified, Kallu started to regularly drop by and check in with Kuku Didi. After slowly gaining her trust and getting her diagnosed at a local hospital, Ishwar Sankalpa, the organisation for which Kallu works, tried to negotiate with her family and persuade it to take her back. But her son and daughter-in-law were adamant that she could only stay if she contributed to the running of the household. Kuku Didi, who now collects and sells recyclable materials, makes about 30 to 40 rupees a day, enough to feed herself but not enough to ‘contribute’. Kallu is trying to get her a widow’s pension, which may help. But until that vast bureaucratic nightmare has been negotiated, Kuku Didi sleeps on the landing and cooks in the open space in front of it. As we leave, Kallu, who is supernaturally good-natured, summarises thus: ‘People are worse than animals.’”

Persons with psychosocial disabilities—which is the term used for persons with mental disorders that reflect the social model of disability—were represented through the World Network of Users and Survivors of Psychiatry before the drafting committee of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). It played a crucial role in drafting some of the key principles in the Convention—such as the right of recognition of personhood before the law, the right to liberty, and the right to live independently and within the community. However, globally, this community has not gained much in terms of the recognition of these rights in domestic legislation. The Mental Health Care Bill (“the Bill”) follows the trend—laying out progressive concepts while at the same time keeping to the commonly accepted methods of forced institutionalisation, electroconvulsive therapy, and recording findings of “incapacity”.

In a similar vein, the Bill recognises the supremacy of the right of a person with mental illness to live in the community and the need to make the “mental hospital” only the last resort. The social model of disability treats a diagnosis of mental disorder as an impairment. What causes the disability are the barriers that exist and prevent this person from living in the community on an equal basis with others. These could be societal, like stigma and abuse; inaccessible environments; the lack of access to treatment and therapy; and other factors. One would think that the news of a “Mental Health Care” law would be good news to those who, like Kuku Didi, are trying to negotiate an impairment with the intersectionalities of poverty, gender, age and disability along with her unsupportive family environment. Unfortunately, like many pieces of social justice legislation in the recent past, the Bill, recently passed by the Rajya Sabha, has left many in the sector with mixed feelings, particularly because of its failure to move along with the “paradigm shift” of the disability discourse and its consideration of mental illness as solely a medical condition.

For any individual to exercise the right to live independently and within the community, varying levels of support and access to services are necessary. In the context of mental health, these services are not only mental health-related and may not be limited to the individual. Communities can be harsh and unforgiving. The role of community-based workers like Kallu and programmes like Ishwar Sankalpa enable women like Kuku Didi to reframe their lives in the new circumstances. Community Based Rehabilitation (CBR), developed by the World Health Organisation (WHO) and practised all over the world, provides a range of services that complete the circle of support and enable persons with disabilities to live in their own homes and within their own communities if they so desire. For instance, facilitating information and access to government schemes and rights available for the person and his/her caregivers, negotiating barriers and problems that can come up at different points in people’s lives, strategising towards inclusion of the child or person within the community and family, linking families and persons with disabilities to others for peer support; and creating disabled persons’ organisations or self-help groups or support groups. The approach of each CBR project depends on the context of the community, an adaptability that is the strength of the model. Much like the rights discourse, even community-based approaches towards persons with psychosocial disabilities need to move on from the strictly medical approach. But globally, and in India, successful examples of holistic approaches towards inclusion of persons with psychosocial disabilities in the community have been established, and have even, in some cases, been proven to have improved therapeutic outcomes for these persons.

Community-based interventions for persons with mental disorders have until now focussed exclusively on treatment services. The National Mental Health Programme and the National Mental Health Policy both speak in these terms. The Rights of Persons with Disabilities Bill, pending reintroduction in the Rajya Sabha, has been extensively critiqued for its failure to effectively give effect to the right to live independently and within the community as well.

When confronted with situations like Kuku Didi’s, the usual response is to debate whether it would be better to send such a person to a mental health institution, ostensibly for her own protection and to ensure that there is a roof over her head. Globally, the view of persons with psychosocial disabilities themselves who have experienced institutions is slowly gaining acceptance in policy circles: the view that institutions are archaic and outdated and rob one of the essence of humanness, one’s personhood. Even limited periods of stay for “therapy” and “treatment” extend to years and decades, and even those who leave find themselves entirely unequipped for the outside world.

In recent years, the condition of long-term care institutions has been well documented, with instances of extreme abuse and death capturing national headlines from time to time. The Human Rights Watch Report “Treated Worse than Animals” highlighted the plight of women with intellectual and psychosocial disabilities in the mental health institutions of Pune. The Supreme Court is currently seized of a public interest petition concerning conditions at Asha Kiran, a group of homes for children and persons with intellectual disabilities in Delhi. The status report submitted by a few members of the advisory expert panel set up by the court highlighted overcrowding in the facility, and the lack of rehabilitation services for patients. Large numbers of residents, particularly women and children, were diagnosed as having mental health disorders and put on psychotropic medication with little else to support their rehabilitation, the report said. The lack of adequate staff; inadequate care; poor nutrition; and the lack of hygiene, meaningful activity and interaction with the larger community and society are seen to have had a profound negative effect on the physical and mental health of the inmates.

Besides rendering persons with psychosocial disabilities incapable of contributing to the community, institutions also take up a substantial amount of funding and supervisory manpower of the State government. In India and in other developing economies, long-term institutional care is gaining in popularity across the public and private sectors. A budget analysis undertaken by the Equals Centre for Promotion of Social Justice, Chennai, has revealed that there has in fact been an increase in spending on the establishment of institutions for persons with disabilities by the Ministry of Social Justice and Empowerment and the Ministry of Health and Family Welfare.

The expenditure on community-based inclusion measures, despite a decade of ratification of the CRPD, has been negligible and limited only to insufficient disability maintenance or allowances. The United Nations Committee and the Office of the High Commissioner on Human Rights have both, time and again, cautioned member states against the problematic nature of institutions and of the various avatars that they may take —“halfway homes”, “group homes”, and so on—by testing the autonomy and say that residents have in the functioning of these spaces and the freedom they have to conduct their lives within them.

Idealistic goal?

How will persons with psychosocial disabilities live in the community independently within a rights-based approach? The goal is often dismissed as idealistic, mostly because of its perceived impossibility. Within the framework of the current Bill, it is perhaps so. Success requires a reimagining of many established notions regarding persons with mental disorders and what they require. A starting point would be including persons with psychosocial disabilities in identifying the barriers that they face on account of their impairment. For example, do they find it easy to access available social protection schemes and disability certification? What is the nature of discrimination that is faced at the workplace, in the family, in hospitals, and therefore what is the kind of reasonable accommodation required? How do services available for all persons respond to persons with psychosocial disabilities? It is well documented that people exposed to conflict, natural disasters or other humanitarian emergencies, or children and adolescents exposed to substance abuse or violence, are more at risk of mental health disorders, as are women who are exposed to violence and abuse.

The burden of caregiving for a person with a mental disorder in the family who faces high restrictions in participation often falls on the family, and is not paid for, and most often falls on a female family member. It is this burden of caregiving that leads to abandonment—be it in an institution or on the streets, or in the bylanes of the Bannerghatta National Park near Bengaluru in the hope of a quick end for the “suffering” family member. How can we compensate caregiving or create a cadre of trained personal assistants to assist these persons in a dignified manner?

The idea that decision-making should be an independent undertaking is also one that requires reimagining. Supported decision-making requires recognition and support services. Experiments have begun around the world, with those like Open Dialogue in Finland, which has been found to have positively impacted the rates of psychosis in its consumer base, and the role of Personal Ombudsmen in Sweden.

Unfortunately, community services are still stuck within the notion of what “mental health services” should be. The idea that persons with psychosocial disabilities have other needs, which extend beyond therapy, is not within the scope of this legislation. Persons with psychosocial disabilities tend to be split between the Ministry of Social Justice and Empowerment (as a disability) and the Ministry of Health and Family Welfare (as a health concern), with other Ministries having absolutely no responsiveness to persons with disabilities in general, despite a mandate to utilise 3 per cent of their budget for persons with disabilities. Recently, the Department of Personnel and Training objected to job reservation for persons with mental illness under the Disabilities Bill. Yet livelihoods can make the difference between recovery and a lifetime of a “revolving door” with the institution.

One issue of grave concern under the Bill is that it seeks to regulate all places (regardless of ownership) where persons with a diagnosis of mental illness are admitted and reside at, or kept in, for purposes of care, treatment, convalescence and rehabilitation, including hospitals and nursing homes, by requiring their registration as mental health establishments. The problematic aspect here is the resultant segregation of services as meant for “mental health”. With the terminology so wide, there is a legitimate concern that establishments meant for general well-being may begin to discriminate against persons diagnosed with mental health problems on the grounds that they may face the consequences of a penalty that may extend to Rs.50,000 for the first contravention. The current avatar of the Rights of Persons with Disabilities Bill, on the other hand, does not penalise discrimination in access to places and services run by the private sector. The lived experience of persons with psychosocial disabilities is that medicinal cures are hardly enough to ensure long-term recovery to become a contributing member of society. Rehabilitation is much more than medication and therapy, just as “mental illness” is much more than the commonly accepted notion of being a “chemical imbalance”.

Radhika Alkazi has worked in the field of disability for the last 30 years and is the founder of ASTHA, an NGO in Delhi that has been working with children and persons with disabilities and their families in urban communities for 23 years.

Amba Salelkar is a lawyer and works on the promotion of legal harmonisation with the Equals Centre for promotion of Social Justice, Chennai.

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