From ‘user survivor’ to ‘person with psychosocial disability’: Why we are ‘TCI Asia’

Around 25 of ‘us’ came together for a significant meeting in 2013, in Pune, from four Asian countries – Nepal, China, Philippines and India.* We were people without an identity, along with our allies from the cross disability movement and other unidentified ‘supporters’. ‘Mad studies’ had occupied a niche and somewhat obscure domain in India, a country which lives in the postcolonial shadow of legal and penal legacies left behind by the British Raj concerning ‘lunatics’ and ‘idiots’. Commonwealth countries continue to oppress peoples with those degrading and deeply legally entrenched options for selfing ourselves.

Our brief engagement in the World Network of Users and Survivors of Psychiatry (WNUSP) offered the possibility of a rather strong identity, which we Asians generally failed to inhabit: ‘users’ and ‘survivors’ of psychiatry.  Several of us in Asia had been board members or members of this organization, which made formidable contributions to the UN Convention on the Rights of Persons with Disabilities (CRPD) final text. However, the context was white, north country, institution based psychiatry, high income. We did not have the language or the resilience at the time to present a subaltern narrative as people of colour from south country, indigenous, diasporic, low income contexts where human rights violations happened more in open communities or unregulated social institutions than in highly regulated closed door mental institutions. Activism in Europe too was around the identity of ‘users and survivors’. We, from the global south, did not have spaces in other global movements – Intervoice, INTAR etc., for example – which were asserting our rights to be freed from coercion until more recently.

India was among the first nations in Asia to sign the CRPD. This mobilized us, those of us without an identity and without access to any support systems, within the larger cross disability movement in Asia and elsewhere. The CRPD trainings offered by the International Disability Alliance in Asia opened up many insightful doors about inclusion and access to Development, and gave us new identity possibilities, of ‘persons with psychosocial disabilities’. The time spent in Pune, with peers and supporters, brought the consensus that a disability identity offered us a chance at life whereas the identity of ‘user and survivor’ only pitched us against the dominant medical establishments.

However, attaining clarity and consensus on assuming the identity of persons with psychosocial disabilities is a long process, as identity questions often are. Activists had emerged as ‘users and survivors’ from high income Asia countries (Japan, China, South Korea, Hong Kong) and the commonwealth countries (India, Bangladesh, Pakistan, Singapore, Malaysia, Myanmar, etc.), which depended on coercive institutionalization in place of ‘care’. There were also the Asian identity, the identity of being from the global south, a kind of celebration, even, of our unity in diversity, to come together as oppressed peoples from this region. Other identities were strong too: of being minority, woman, gay, transgender, people of colour, etc. Through our engagement in Asia, and thriving debates over several plenary events and participation in worldwide debates on disability identities and experiences, new collectives emerged, for example the Psychosocial Disability Inclusive Philippines (PDI-P), Korean Association for Mobilizing Inclusion (KAMI), and Peer Support Thailand.

We, in Asia, have taken the CRPD to our hearts because of its inspiring vision of an inclusive world for all. The CRPD is a smoothie of traditionally given human rights, in a format that makes it taste fresh, healthy and new. The framing of human rights changed with the CRPD – ‘reasonable accommodation’ customized human rights to the dictum that “A person is a person, no matter how small.” A smoothie made of several rights – Articles 12 (Right to legal capacity), 14 (liberty), 15 (freedom from abuse, violence and exploitation), 16 (freedom from cruel, inhuman degrading and torturous treatments), 17 (integrity) and, the mother of them all, 19 (Living independently and being included in communities) – was heady. They predicted that forced treatment in all settings would end; and in many places, would never begin. Violence everywhere against persons with psychosocial disabilities would end.

We were eager to understand Article 19 because all other roads seem to end here:  A person needs to be living in a place of choice; with people who they care to live with; having access to all kinds of general and specific services and community based systems of support; on equal basis with others. However, pedagogy on Article 19, when compared to Articles 12 (legal capacity) or 14 (Liberty and security), is very limited, even non-existent. Legal traditions anywhere in the world, have prescribed what should not happen. But notions like human connection, support, care, community etc., which bring people together as a human society, have not been explicated within law. Since family members are, frequently enough, the perpetrators of violence against persons with disabilities, there was deep mistrust and skepticism about evoking any notion of ‘care’ or ‘community’ in the north country context. South country low income experiences, however, were more ambiguous in their responses to family, and open in terms of willingness to dialogue but also transform social relationships.

Social contract theorists like James Stuart Mill, Jeremy Bentham, John Mill, et. al., who birthed modernity and the modern political systems, are perhaps to blame for this serious omission, the ambiguity, or even the subtle ambience of paranoia that we seem to inhabit today. The social contract theorists gave a view of human society where every exchange was a rule-bound negotiation. Contracting came prior to human engagement. Mutual trust was ever in doubt. And a holding of hands, so to speak, among fellow human beings, always needed to be deconstructed with respect to personal maleficent motives.  Considering that every treatment action was contractual, within this broader frame of human exchange, the battle in the global north has been combative, aiming to establish ‘voluntary and informed consent’.

However, the CRPD gave us a framework of human society as based on mutual respect, interdependence and support, if not care. This vision for human society resonated with us in the global south, for many of whom support still came from the immediate circles of care. For us, the struggle for ‘voluntary and informed consent’ is itself too narrow, and defined against a system which gave us either pills or institutions. There was more to life than battling psychiatrists. The CRPD gave us choice in the widest sense possible, within development processes, not limited to and inclusive of informed consent within healthcare settings, and a whole range of people in support function. The General Comment 5 from the Monitoring Committee of the CRPD recently gave elaboration on this right.

TCI Asia happily felicitates the Special Rapporteur of Health, Mr Danius Puras, and his recent report on achieving the highest standards of health, for his squaring the circle, and breathing life into the elephant in the room.

Asia is an emerging economic power and, in direct proportion to that, a lucrative site for pharmacracy. Clarion calls by the global mental health movement to ‘fill the treatment gap’ of ‘mental disorders’ is resulting in growth of traditional mental health care of pills and institutions. This kind of ‘modernisation’, as Mr Puras has described well, is leading to increase in the ‘global burden of barriers’, newer forms of coercion, for example modification of old institutions (jails, ‘vagrant homes’, social care institutions) for involuntarily incarcerating persons with psychosocial disabilities, and euphemisms for coercion (for example ‘high support need admission’).

New laws in India (Rights of Persons with Disabilities Act of 2016, Mental Health Care Act of 2017) are now starting to consider inclusion as a human right. However, the fulfilment of this right remains to be seen. New MH legislation, where they have been made, just like the old ones, has only led to greater violence and violation, enduring detention, isolation and segregation, possibly for life. For example, South Korea’s new Mental Health Act has resulted in the growth of hundreds of closed door institutions and the highest average of days spent in involuntary commitment per person.

No amount of stories told about serious human rights violations within institutions and coercive treatment will result in Inclusion, as that is another kind of practice. The WHO Quality Rights Training program has come in recently with new promise of a world without institutions. But what it will only do is correct individual behaviours within the mental health system, not fragment the system itself, which is what is needed. WHO QR makes rights violations a deviance in interpersonal exchanges between the asylum staff and the patients (sic) and not a deviance of the whole system, its laws and institutions, or from core human values and our essential nature to peacefully cohabit and care.

TCI Asia is interested to promote imagination as well as investments on community based inclusion practices for their heuristic value, and for realizing Article 19 for persons with psychosocial disabilities. By now, TCI Asia has established that traditional mental health treatment will not lead to inclusion, rather the opposite will happen. ‘Recovery’ will not lead to inclusion; ‘Peer support’ in the way it is delivered within the medical paradigm will not lead to inclusion. These are all silos, occurring within the epiphany of ‘mental illness’ and its ‘treatment’. Further, actions for the human rights of liberty and legal capacity will not result in inclusion, as those actions are silos too.

Inclusion is a broad range of collaborative actions in local communities, addressing the capacity building needs of everyone. For a person to be included, the world around them must be transformed to be inclusive. Reducing the existing barriers and enabling communities to start to include are the expected outcomes from inclusion programs. Inclusion is an everyday practice which requires transformative learning cycles within families, within households, within communities and neighbourhoods. Good practice examples do exist in the context of Asia.

TCI Asia (Transforming Communities for Inclusion of Persons with Psychosocial Disabilities, Asia)  is a regional DPO of Asian persons with psychosocial disabilities. Our focus is on Article 19 (Living independently and being included in the community), expanding on the pedagogy and manifesting the practice of it in Asia. TCI Asia has 15 country members in Asia, with alliance of national groups of persons with psychosocial disabilities, as well as individuals; with supporting cross disability organizations and a number of technical support agencies. We are now making strong working linkages in the Pacific Islands countries. Our vision is “Full freedoms and enjoyment of all human rights, and the full inclusion of persons with psychosocial disabilities, in compliance with the CRPD”. For more information.

* We express gratitude to the International Disability Alliance, for exhaustive CRPD trainings in South Asia, which allowed Bhargavi to travel widely in Asia through “country missions”, to mobilize our communities in several countries; also specifically to Alexandre Cote, then with IDA as Capacity Building Programme Officer, for intensive facilitation and mentorship towards building up TCI Asia.

Bhargavi V Davar, Ph.D., is a childhood survivor of long term exposure to psychiatric institutions. She lived with long term trauma for decades, bursting into nightmares, bizarre smell and skin phenomena now and then, stupefying her. She started Bapu Trust to show the world gentle and caring ways of collaborating with people with a psychosocial need. She is the convenor of the Asia platform, TCI Asia. She has met the ‘Who’s Who’ of our global movement since early 1990s, and pays homage to their wisdom and strengths often. She is a trained Arts Based therapist. She loves to follow many enlightened buddhist monks and nuns; and adopt their ways, where possible.

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