Transforming Communities for Inclusion: Visit by Chinese team

Linus and Ken, from Equality Justice Initiative, EJI, China
Linus and Ken, from Equality Justice Initiative, EJI, China

The objectives of the Bapu advocacy project on “Transforming communities”, supported by the OSIF, is broad, including

  • To provide a regional platform for people with psychosocial disabilities to create a common vision for advocacy
  • Through workshops and studies, to develop strategy papers for advocacy actions with respect to laws, policies and institutional relationships in the region for inclusion of people with psychosocial disabilities.
  • To develop a common vision for pedagogy and practice related to Article 19 (among other related Convention on Rights of Persons with Disabilities articles) as a way of transforming communities to include people with psychosocial disabilities in the region.

The Bapu Trust has looked for opportunities to participate in the regional mobilisation of persons with psychosocial disabilities through a variety of means: participating in TOTAL trainings on the UNCRPD; making Mission visits (Nepal, Philippines) through 2013; and organizing a regional workshop in Pune, May 2013. A statement was made by the Asian group of persons with psychosocial disabilities, later shared in Cape Town at the WNUSP strategic meeting. Visit to HongKong was also facilitated, to meet Equality Justice Initiative (EJI) in HongKong and to participate in cross disability dialogue at HKU, HongKong.  Other than these which were supported by OSF and IDA, BT has also engaged in academically publishing findings from their engagement with cross disability advocacy, mobilisation of people with psychosocial disabilities; engaging in civil society as well as government processes of CRPD harmonisation; critiquing Global Mental health; participating in regional UNESCAP events; exchanges with international agencies such as HRW; participating in the India visit of SR on VAW; contributions to WNUSP for the HLMDD 2012; supporting design and participation at a side event on Transforming Communities at COSP 2013; providing trainings at local level for a variety of stakeholders and care givers on UNCRPD; follow up in-country on legal reforms and other actions in congruence with the objects of cross disability advocacy in the region; and finally, editing the CRPD Monitoring Report for the National Disability Network.

In continuation of being a facilitator of transforming communities for Inclusion in south Asia, Bapu Trust has presented its model community mental health service program (2009- …) in a variety of national, regional and international spaces through videos, academic publications, field visits, participation in media, etc. Since 2012, Bapu Trust community program has elicited international, national visitors; academics; interns; government officials at higher officer level; users and survivors; mental health service providers; disability activists; other than a variety of support agencies.

Objectives for this phase of the project (2014-2015)

  1. A regional level network, and public presence in policy circles, moving towards a platform, and a suitable formal structure and
  2. Move, among persons with psychosocial disabilities of the region, and its leadership, towards a unified understanding of the CRPD and capacity to negotiate with regional and global policy making bodies
  3. Better understanding among regional cross disability leadership and policy networks on Inclusion
  4. Better understanding for BT on the legal strategies to be developed for India and the region, particularly in the area of strategic litigation, possibly towards a legal paper in the next phase
  5. Bringing some clarity / focus of action in China on enabling a user survivor movement, and their expectations from human rights communities
  6. Inventorying good practices and alternatives in the region, and a website and a report / paper on this for wider dissemination

Visit by EJI representatives to Bapu Trust, Pune

Shuji Liang (Ken) and Yang Chouniu (Linus) arrived in Pune on 12th for training (13-18th) August.

Day 1, 13th August 2014

Session 1: CRPD refresh

In this session, facilitator touched base on group’s knowledge of the CRPD, especially elaborating on key articles 12, 14, and 17. The importance of civil political rights in the advocacy by users and survivors; the indivisibility of human rights; illustrations of violations of right to integrity in the context of use of force; key elements of article 19; were discussed and refreshed. A need was expressed for intensive CRPD training in China.

Session 2: Fieldvisit

What is ‘community’? While planning the training, we were curious about the Chinese notion of ‘community’, whether and how it is different from ours. Also, we wanted to share the Bapu Trust practice that CRPD and article 19 required an expansive and inclusive notion of ‘community’. Enabling communities for Inclusion means we actively engage all of the communities. So participants to the training had a field exposure in the afternoon, and debriefing later on, about ‘community’. Who are they, how do they process mental health and disability, how do we work with this abstract entity? Bapu Trust did not assume that ‘community’ means ‘family’. Community in Pune, for the Bapu trust, included enabling ‘Social capital’… a network of interlinked resources available to people on daily basis, and available to people as safety net when someone needs it. The participants went on a ‘resource mapping’ exercise, (with fieldworkers Naziya, ShahinKhan and Ratna, along with translator Bharti), and visited a variety of people and spaces where conversations around ‘mental health’ and ‘disability’ happened facilitated by the Bapu Trust. They came to know of our collaborating agencies which provide a number of concrete services to the BT clients, including Domestic Violence interventions. They also met clients and families. Visits to neighbours and supporters of some of our high support needs clients were also offered: BT program enables neighbourhoods to give care.

In the debriefing, cultural and local differences were discussed, whether ‘community’, in the way Bapu Trust experiences it, exists in China. It seemed that in a service setting, as experienced by Ken, a kind of community did exist. A discussion ensued, whether a mental health program needs to go ‘public’ or liaise with a variety of community groups and organizations; or should just serve the needs of ‘mentally ill’ people. BT team offered that a community has different kinds of needs in psychosocial dimension, and bringing the subject to the whole community may make it easier for empathy and community care giving skill to develop. Another discussion revolved around highrise apartments for low income communities in ‘modernized’ societies like China; versus sprawling chawls or slums as found in Pune. The strengths of the latter model in bringing people closer through physical proximity and structure of housing were discussed. While there was the sense of difference, cultural similarities were also acknowledged. The links with Development, the integrated approach to Inclusion and community collaboration on implementing human rights were highlighted through this discussion.

Day2, 14th August 2014

Session 3: Circle of care

The morning session included garnering the learnings from the visit to the community, and enabling the participants to think about ‘community support’ in their own local context. The fieldworkers conducted the morning session, with support in translation by Kavita. While ‘social capital’ is an abstract notion, an activity was introduced, called ‘Circle of care’. In this activity participants are provided with a drawing of circles embedded within circles. Using their own context, they have to identify supports and resources in each circle designated as Friend, Family, Social Service, Neighbour, Work peer, etc. The activity was revealing, in terms of tracking supports for each client. A chart was made by the participants giving the name of support person / service, and the role played by that person / service in care giving. The Chinese and Indian context, the levels of ‘modernisation’, the level of dependence on the state for care and services, the magnitude of holding together of communities, diversity in local situations even in-country, etc. were discussed. For example, Beijing, GhonZhou and HongKong may have diversity in terms of social support; just as Ram Nagar and Lohiyanagar, as equally deprived low income communities may have differences. Establishing a community program must be mindful of the diversity.

Session 4: Peer and support counselling

The second session in the morning was on sharing Bapu Trust learnings about peer support and support counselling. This session was also held together by the field workers, with Kavita as translator. Two movies on Non-formal care system was given as homework the previous day. This system also mobilized BT care giving resources as well as the resources from the communities extensively in the process of Inclusion of persons with mental illness / psychosocial disabilities / high support needs. A ‘peer’ in the Bapu Trust system is anyone who shares the socio-economic background of the person in the community, and not only the user / survivor ‘peer’ in the way that programs in the west use the term.

Session 5: Visit to a community center run by care givers

In this session, all of us participated in a Yoga session conducted by the organization. Following this, there was a presentation by the organization of their beginnings and their work. An extended dialogue was held on the question of Mental Health Care Bill, Nominated Representative and Advance Directive.

Day 3, Debriefing: 15th August, morning session

Exposure to these programs of involving the communities and the role of the peer as a proxy friend or relative raised a lot of concerns about program boundary, hierarchy and power in the communities. The strengths of this system of care versus the strengths of self advocates advocating for their own needs were discussed.  It became recognized that the Seher program is a complexly designed care givers’ program. The differences in the training needs of the participants also started becoming clear. One participant, being a social worker, had keen interest in community based support practices; whereas the other participant had more keen interest in how this all serves advocacy purposes.

The morning session developed more on the notion of ‘community’ as the other program visited had a different approach to community. Even though it was a community center, program was not customized to personal needs of each and every person passing through the center. Some controlling and regimented aspects attracted the notice of the participants, with the realization that a community center can also become custodial. Gate keeping function of care givers was discussed, in both Bapu Trust program and the sister program visited; and linked with Article 12 on legal capacity.

15th August ongoing: Running recovery / therapeutic groups

The rest of the day focussed on identifying, bringing together, maintaining and closing therapeutic groups. The logistical aspects included why therapeutic groups, identification of participants, contracting and consent, sessions planning, maintaining the groups, and closing. Handouts and tools such as Self Reporting Questionnaire and the WHOQOL were discussed. Bapu Trust’s own tool was also discussed in comparison to the WHO tools.

A difference emerged from Linus’ critical questions between ‘recovery’ groups and ‘self advocacy groups’. The complex user survivor situation in China, their relationship with other organisations and within themselves, was discussed. The difference and tensions between ‘peer support’ as a user survivor led recovery based approach; and self advocacy as a user survivor led advocacy approach was unbundled in the discussions. The EJI and Bapu Trust experiences of ‘who owns self advocacy groups?’ were also an important aspect that came up for dialogue. Whether self advocates should be paid for their work was also discussed, as this is a big topic in world self advocacy movement.

Bapu Trust has a complex set of relationships too. The Bapu Trust also ran a self advocacy fellowship for a while, but could not keep the funds coming in consistently in a changed situation of political economy for the mental health sector. The Bapu Trust ran a separate peer group through consultative processes which were built more on advocacy principles rather than recovery principles. The lack of structure and interpersonal conflicts among group members led to gendered violence and other threatening situations in the group.

Seher recovery groups may be led by peers but not user / survivor peers; rather a ‘peer’ was someone who shared the socio economic and other elements of marginalization (ethnic minorities) with group participants. Group co-ordinator was a trained Arts Based Therapist, and neither user nor survivor. Project leader was a survivor and trained Arts Based Therapist, with strong faith in both recovery and advocacy. One of the Bapu Trust grassroots workers was a survivor peer / male, being somewhat marginalized within Bapu Trust care giving community as a self advocate. Finally, a cadre of ‘survivors’ is emerging from the recovery group work, some of whom had serious mental health needs, and is in recovery.

Another important question that came up for dialogue was, ‘How well should a person be before they are chosen for selfadvocacy?’ The inappropriateness of the articulation of this question was discussed. The question comes from a secondary or tertiary stakeholder perspective, and not a primary stakeholder perspective. Who decides, and who provides the opportunities and the resources? Who gatekeeps on the subject of self advocacy, except the self advocate himself or herself, and their peer community? A person who is ‘well’ may drop out of advocacy altogether and become ‘mainstream’. It is difficult to force such people into self advocacy. People may feel strongly about self advocacy at the height of their distress, disturbance or disability, and may have a strong identity as a person with a disability or as a user / survivor. Infact some of the strongest self advocates may be those with most intense self experiences of disability and survival (within the mental health system and society at large.) They should have the opportunity and the resources to develop a career in self advocacy. CRPD recognizes experiential experts, an expertise that should be paid for. Is recovery important for self advocates? Maybe and may not be. Some self advocates may ‘cycle’ between two areas of recovery and advocacy. The larger holding communities should respect the voluntary nature of these choices and provide relevant and customized opportunities. Seher program has given us the basic learning that to customize opportunities requires a complex project design, but when done, is quite appealing and feasible to implement; and maybe infact compatible with the CRPD.

Day 4, 16th August 2014

In the original plan, the proposal was to spend a half day to build skills on complex project designs needed for community mental health, in order to address a wide spectrum of needs inclusive of people with high support needs. However, this plan was changed and the half day was devoted more to discussion on legal capacity with the whole team.

While there was understanding that Legal capacity is a legal issue, and is about the status of the person before a court of law; how autonomy in decision making is fostered in the community was discussed at length. It was really exciting that this question was conducted as a dialogue between the visiting participants and the BT service team. The grassroots team gave many illustrations about enabling decisions using some case studies from their work. The definition of ‘disability’ was illuminating in this regard, as it is tied to ‘evolving capacity’, ‘reasonable accommodation’ and ‘necessary support’; And also, Article 19 looming large on implementing Article 12. Linus had questions why we don’t do CRPD awareness in the communities; or talk to people about human rights and legal capacity. To this, the fieldworkers responded that, we don’t want to conflict within households by telling them, say, ‘Legal capacity is a human right’. Instead, we teach them how to implement legal capacity within households by teaching families how to give support to the person with disability: how to understand the person, recognize they may have likes and dislikes, their needs, how to communicate with care, how to be calm and peaceful, etc.  while at the same time families ensure that there is no violence or neglect. Once communication is better established within households, and emotional empathy is developed, people start having space to make their own decisions. Moral and social pressure, rather than legal pressure, is used quite a lot in such transactions. Poor communities don’t care much about legal pressure anyway and they don’t have much at stake in terms of legal aspects of legal capacity (no property, bank accounts, etc.)

Day 5

Was devoted to watching ‘A drop of sunshine’ and having a debriefing session around understanding and given support to people with voice hearing experiences. The work of InterVoice, an international voice hearing network, was shared. Survivor perspectives about voice hearing, assessment of the experiences, use of arts based therapy methods in giving support to people who hear voices, working with families, peer support, re-parenting, diets, conflict reduction, improving social capital; other than self help techniques for dealing with voice hearing, acoustic streamings and other sound or vision based extreme states, was discussed.

Other key elements of the exposure visit

The participants were given exposure to basic body based therapy techniques that we use in the community, including breath based practices and visualization. Such practices are encouraged with people after matching need of client with practice. For example, a ‘sit down and watch your breath’ meditation may not suit all people with mental health issue or disability. Breath practices that lead to catharsis of anger; a basic visualization for depersonalization or ‘not having a body’ feeling; singing bowl meditation; gibberish meditation; a classic relaxation technique; were done as examples of body based recovery alternatives.  These are also done with the larger communities and families. Ken and Linus kindly returned the exposure by showing the BT team basics of TaiChi and TaiKwando. We talked about ‘alternatives’ as what is available locally for mind/body healing.

All the awareness (IEC) materials of the Seher program were displayed for the participants, some relevant books and reports; and there was engaged discussion and a poster making session around methods of closely interacting with communities. A graffiti wall was put up for people to include key elements of the days’ learnings. Everyday some homework was given for the participants, mostly a video about the program or some handouts. They also went with the field workers to the settlements (basti) to see a ‘corner meeting’, which is one of the awareness strategies that the project uses to directly engage communities in mental health conversations. The question was discussed, how these techniques, if at all, are useful in the context of EJI and its work with self advocates. Lunch together and sharing everything is a frequent community practice in the Bapu Trust. The visitors loved this part of ‘community’!!

Day 6 was largely devoted to taking feedback and closures, which was an emotional experience. As a stereotype, Bapu Trust team had expected 2 women to arrive; or 1 woman and 1 man. Surprise, surprise that both social workers were men!! They were very much cherished by the Seher team and also by the communities who they visited. The visiting team had to leave earlier than planned on the last day due to traffic worries on the highway enroute to the international airport.

Feedback

While the feedback was very heartwarming and encouraging to the Bapu trust, some questions remained unanswered: The tensions between self-advocacy and recovery were never fully resolved (and perhaps cannot also be fully resolved). Certain advocacy topics were not fully discussed, such as ‘advance directives’ and recent policy advocacy against the mental health care bill. According to the feedback received, also, more time could’ve been spent on the UN-CRPD.

Suggestions for future work of BT and EJI

  1. It may be useful for EJI and other mental health networks to advocate for community based mental health care in the context of the new mental health law and the policy guidelines; along with facilitating self advocacy and other user survivor advocacy.
  2. Bapu Trust also can suggest structured CRPD trainings for EJI staff, user survivors networks, and other related stakeholders (e.g. supportive mental health workers, lawyers, and cross disability activists).
  3. We suggest and support EJI’s strong role in enabling self-advocacy for Inclusion, and negotiation with other constituencies, particularly lawyers, psychiatrists, mental health networks and policy makers.
  4. In the long term, with support of agencies that may support services, a pilot project or initiative on implementing Article 12 and Article 19 in China / Hong Kong by involving collaborating agencies may be useful in anchoring policy discussions around concrete examples.
  5. Exploring more the complex relationships and creating enabling environment for user survivor self advocacy.

Finally, Bapu Trust is very keen to engage other groups in the region on such exposures and training opportunities. They enable rich cultural exchange and strengthening of a philosophy of Inclusion.

 

Report by Bhargavi Davar,

29-08-2014, Pune.

 

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