Right to live independently and be included in communities
29th November, Lavasa, Maharashtra, India
Organized by TCI Asia
Supported by Bapu Trust, IDA, INTAR, CBM-A, DFAT, FGHR and Mariwala Health Initiative
About TCI Asia
TCI Asia (Transforming communities for Inclusion of persons with psychosocial disabilities, Asia) is an Asian Alliance of people with psychosocial disabilities, and cross-disability supporters, focussing on Article 19 and its realization in the Asian region. Since 2012, TCI Asia has made several country visits, annual plenary consultations, strategy development workshops, and has engaged upto 15 member countries, to enhance the pedagogy and practice of Article 19 (Right to live independently and be included in communities).
Background to the RoundTable:
Most countries worldwide have ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Policy is being informed by the SDGs (Sustainable Development Goals). Together they provide a human rights based international jurisprudence for Disability Inclusive Development making a concerted transition towards creating more community based services and support systems, favouring choice, consent and community inclusion of persons with disabilities. This is much necessary for persons with psychosocial disabilities, who continue to face very high level of exclusion, discrimination and human rights violations.
International jurisprudence and policy frames
The World Report on Disability by the WHO and World Bank (2011) served as a landmark in enabling a transition from institution based mental health care to Disability Inclusive Development. Other than Concluding Observations, the UN CRPD Monitoring Committee has in the past brought out several important guidance documents, such as General Comment 1 on Article 12 (Right to equal recognition before the law). Further impetus on linking mental health and psychosocial disability to community development, has come from the “Thematic Study on Article 19” (Right to live independently and be included in communities), of the Office of the High Commissioner of Human rights [A/HRC/28/37, December, 2014] and the Guidelines on Article 14. In2016, the CRPD Committee was in attendance at the Day of General Discussion on Article 19 towards a General Comment on Article 19.  Recently, the UN DESA set out a Background paper on “Promoting the rights of persons with intellectual and psychosocial disabilities”. The OHCHR adopted a Resolution on rights of persons with intellectual and psychosocial disabilities [HRC 32]. The WHO has initiated efforts within and in partnership with collaborating agencies to come out with good practice reports, promoting explicitly a de-institutionalization process and community based mental health work having outcome of mainstreaming, leading to a number of synergizing efforts worldwide (Washington, Leicester, Trieste). A number of international grant and support agencies such as IDA, DFAT, CBR, CBM-A and others have been closely involved and issued strategy statements on community based inclusion, especially of persons with psychosocial disabilities.
INTAR India 2016 continued the global efforts on interpreting and realizing Article 19. Several important individuals and organizations were represented at INTAR, including, UN CRPD committee members and other UN officers (from the office of the SR-Health; and SR-Disabilities; the WHO; INTAR professionals; various policy makers and academic institutions; practitioners; international development agencies including CBM, CBM-A; global organizations including WNUSP, IDA, other than TCI Asia members and other civil society organizations mobilizing around the human rights of persons with psychosocial disabilities. For the first time, each and every high profile stakeholder within the disability and allied development sectors are coming together to strengthen efforts on realizing Article 19.
The objectives of 29th November RoundTable, was to sift the gains through the INTAR conference; to think through challenges in realizing Article19 and in establishing community mental health and inclusion services. It would be an occasion when many important experts by experience, academics, policy makers and practitioners worldwide, who have met in multiple forums in the last couple of years for mining innovations, will be together yet again, to dialogue further and break new frontiers with respect to the community inclusion of persons with psycho-social disabilities.
The day was facilitated by Alex Cote (IDA) and Alberto Vasquez (Research co-ordinator, office of the SR, Disabilities). Adapting from the Theory of Change, the facilitators asked the question, “In 2031 – where do we want to be and what would we need to do to be there?” In the morning, this question was addressed. In the afternoon, “What do we have (CPRD, QR, OHCHR, CRPD committee etc.) and how do we make best use of these? Key actions we can use in the near future and take this back? What can we action in 6, 12 months.” The opportunities for future work to create break throughs in the mental health discourse worldwide; and the possibilities opened up by such robust global convenings was appreciated.
Learnings from INTAR
The group shared learnings from INTAR India 2016. INTAR brought in participation from 40 countries. The conference has shown that over the last decades, there is palpable evidence for non-medical alternatives towards healing and recovery. All global and regional stakeholders were in the room. In our critique of mGMH and its many emerging variants, we cannot ignore the fact that we are a global community, global voices, with concrete illustrations of support and recovery work in diverse settings around the world. We have new arguments and data to challenge the conventional, colonial ways of doing mental health ‘treatment’ or dealing with people of ‘unsound mind’. It is clear by now that methods created in the global North did not work and that its a failure. Cross cultural exchange and dialogue, and learning from the global south, is important. The CRPD is a tool that can bridge the gap between human rights advocacy and service provision, giving newer designs for service delivery. Many good practice examples exist. Worldwide, the role of peer support groups were experienced as a most needed, critical and far reaching measure. Key messaging and materials created by the WHO encourage CRPD compliance. There is a need for another kind of global alliance spirited by the CRPD. Bridge building across stakeholders, however divergent the view, is possible and needed. There is a need for more focus and linking on intersectionality and cross cutting Development issues, particularly gender and social justice. The international development community and donors have a responsibility to support such global convenings.
Visioning for Inclusion
A ‘draw a picture’ exercise was done, using chart paper and colours to envision inclusion. Groups did rich pictures and debriefed.
As global or regional actors, we share a strong common value base, the vision is the same. Practices may be different and need to be aligned. “It is clear that we need to remove things, not just keep adding them”. Nature metaphors, the role of nature in healing, earth, tree, stars, sun, birds and garden were evident, compelling us to connect more with people working on environment issues. The search for caring communities, importance of love, rootedness, belonging and interconnectedness was strong coming from all the groups. People agreed that we all valued diversity, our right to silliness, having a voice, participation, being able to organize ourselves. There was a common aspiration / yearning; and a search for supportive communities. The ‘tornado’ / ‘hurricane’ metaphor suggested an urgent quest for change, and everybody wants it. We recalled programs like Open Dialogue, shamanism, peer support, which build on nature, connectedness and community. Also, we need to dialogue with national governments and regional policy bodies, to see how they can support the creation of supportive communities.
Responses to the question “In 2031 – where do we want to be and what would we need to do to get there?“
- There is a difference in discussion, how do we ensure that people never become people with psychosocial disabilities, versus, disability inclusion. Policies are adapting to this difference by 2031.
- There is no World War III and it is a peaceful world. People begin questioning what did we do these last 15 years in mental health sector? New questions continue to be created around inclusion.
- Policy makers are connected to people’s experiences of wellbeing and disabilities. Wider, bigger narratives emerge, they are convinced by the personal stories, and the issues are linked to vote banks!
- Research data is amply available from universities and academia worldwide on the new visions on inclusion. Research agendas are influenced to diversify and evidence base for a diversity of models will be available.
- Model policies and laws embed good practices as per the CRPD.
- There is breakthrough in the media, so there is global visibility to this issue; and stories are re- told in the way they are said.
- There are state champions at the policy level (mayors, governors, municipal corporators, presidents, etc.) and celebrity ambassadors, rock stars etc. to our common cause.
- No new mental institutions have been created; World would have learnt from past errors (like we learnt from the world war). Existing ones have been reformed as safe houses, community and independent living centers, training centers, etc., and we have CRPD compliant laws.
- There would have been continuing conversations among key stakeholders. There is individual and community agency and better awareness of mind-body connection; We have framed the approaches we know work, into other frameworks than just community development; There are fewer crisis because people and communities are better prepared; We know how to measure what is happening in a broader way (e.g. social capital); We know how to embed this in policy and practice; We continue engaging with diversity.
- Evidence base is available from worldwide to demonstrate the significance of social capital in health and wellbeing.
- We are included in all development schemes. SDGs start becoming a reality worldwide, and fewer people become people with psychosocial disabilities. Basic income program guarantees a standard of life. There is inclusive education and other social security schemes. More, a top up is available for all people so people can thrive. Families are safeguarded for thriving, so they are enabled to support and care.
- There are excellent models of supported decision making and no barriers to exercise of full legal capacity.
- Mental health is reclaimed as an integral part of our social and personal well being.
- Schemes exist that incentivize people to stay out of the institutions and conventional treatments.
- Policies worldwide embed the new vision of the UNCRPD. Focus is not just on needing more things, but on not needing somethings, and on what resources already exist in communities.
Actioning the vision(s):
What do we need to do in the next year or two to do this? 5 groups were formed around the following themes:
- Reframing public opinion – what are the options?
- Movement/alliance building (internally of the movement)
- Strengthening evidence and research (What works, furthering evidence)
- Exploring new alliances (broadening the circle, gender, environment,…)
- Policy makers – how do we influence them?
Group1: Changing public opinion: How do we change the narrative?
- Literary, media, communication studies and hubs can help in a big way to change the narrative.
- Telling story is a skill – train people on how to tell stories. Stories of different kinds of people or entities can be told, capturing diversity and roles, not just stories of persons with disabilities.
- Tell stories of what does not work, but also give examples of what is working and demonstrate how it is improving outcomes.
- Complex stories may not have as much punch as stories, simply told. Tell stories with people and use as case studies.
- Stories should transcend into research and build up social and community development theory to reach policy levels.
- How do we reach society? Bottom up story telling (in cafes, universities, reading rooms, occupying other urban spaces, etc), horizontal story telling (telling stories to mental health professionals, etc.), top down story telling (try and get stories in the big media outlets).
- Group: Movement building (internally)
- Spoke about how hard it is in the global south for people to speak out. E.g. countries where people can be killed for speaking out. In some countries, forming associations is legally out of question.
- Learn from successes and difficulties from WNUSP, INTAR etc. E.g. WNUSP had success with regards to CRPD – what can we learn from this?
- We can all have broader ideas, but it also helps to have some unified short term goals that we can all together focus on.
3 Group: research and evidence
- There is huge potential for research on social innovations, community based interventions, and ‘alternatives’; Opportunities for new narratives, new research questions and new methodologies.
- Use decades long Mad Studies / survivor / community development research that is already there, using lots of different approaches– community and participatory methods.
- Cost-benefit analyses, budget analysis: we need to show how these alternatives are cost effective.
- Align ourselves with existing community researchers and academics, as equal partners to forging new intelligence on inclusion.
- Open up the minds of donors and grant making agencies to invest in Inclusion research and programming.
- Modeling using participatory research, strategies to capture what is going on ‘metaanalytical approach’, utilizing what we consider the major domains of effectiveness
- Influence policy makers to shift in their mindset of what constitutes evidence.
- Communicate the outcomes of research efforts, not just in academic publishing, but in other ways as well.
- Use Mad in America as an existing forum for sharing and utilising existing resources and evidence.
- Lancet Psychiatry are doing ‘psychiatry futures’. Publish here.
- Group – Exploring new alliances:
Alliance with disability movement:
- Need to strengthen alliance between mental health activism/advocacy with the cross-disability movement. In the latter, a person with a disability is not a ‘victim to be picked on’.
- In India: it has been important to share the disability experience with other cross disability groups, to make ourselves more understandable. Bapu Trust made alliances with deaf advocacy groups (also invisible disabilities) and multiple disability groups. This enlarged the identity by engaging with most marginalised of disability groups.
- Find methods of dialogue and common ground for work together. Disability organisations interested in issues of inter-sectionality and linkages with Development.
Alliance with other movements (e.g. gender, indigenous, minority groups, environmental movement, farmers movements – big issue in India)
- In Indonesia, leaders of the psychosocial disability movement from PJS worked with gender movement on legislation around sexual harassment. So also, in Philippines, PDIP worked on the topic of gender violence.
- Need to work with trade unions, basic services sector in urban areas, indigenous groups who often live on the fringes of cities, local opinion builders and spiritual groups, people living in urban slums, people’s health movement, self help movement, and other.
- The idea of environment is crucial. A critical issue in LMICs is those who live in rural or in more complex geographical terrains. Farmers, rural areas, managing city waste, nutritional health in rapid urbanisation, housing (shelters movements) and poverty eradication – these issues are important to people with psychosocial disability; and also as secondary prevention.
- Participation in other movements’ activities and in creating plans together, sharing movement news, contributing to the growth of other movements by taking up those issues.
Alliances with local governments – not just national
- India: Partnership with Local Government. Some organizations in Asia have had great cooperation through engaging with local governments, which is particularly important if they have their own budgets that they can spend.
Build alliances in the political spaces – finding allies with personal experience of disability or interest in the area.
Alliances with funding bodies for fellowships etc. where possible
- Invite investments into innovations that are CRPD compliant.
- Encourage organizations and networks with traditional mental health care to transition to CRPD compliance.
- Encourage investment in emerging leaders, mentoring relationships, exposure to national, regional, global advocacy and learning situations.
Alliance with the legal field, ageing movement, artists and the media. Also need to build and strengthen alliances with those who have control of funds and are responsible for resourcing.
Build alliances with human rights activists and other UN agencies.
- Group: policy makers – how do we reach and influence?
- We want to challenge MH legislation – but we need alternative policy / legal responses to what we challenge. We must prepare for this.
- A reality check – if we don’t get into public and policy agenda with more concerted actions, this MH law won’t change.
- We need to frame around issues of development, social justice, non discrimination, equality etc. and not just about mental health.
- We need to involve and influence donors – many donors are funding MH legislation.
- We need to keep politicians accountable – they are afraid of noise!
- We need the UN agencies to collectively send out a coherent message.
- Litigation, harm caused by psycho-tropics, for example. We need champions at international level.
- We need to open new doors and find ways for people with psychosocial disability to be engaged in policy making.
- We need champions, ambassadors, messengers!
Conclusion: What are the ongoing processes which we can piggy back on?
- Quality rights (WHO) – Next year there will be a process of global consultations.
- CRPD committee – The committee is eager to know about the way to do things so that they can give more specific recommendations.
- General Comment on Article 19: commenting on the draft, informal advocacy with members.
- Special rapporteur on health – This meeting is helping develop a report to the Human Rights Council on the Right to Health. SR’s office is hoping to get a draft done soon and welcome input into that draft.
- Special rapporteur on rights of persons with disabilities is working on a report on support services (particularly those that support people to live in communities). The office is also working largely and more broadly on issues of deprivation of liberty – and psychiatry is a big part of this.
- SDGs – if there is more interest in MH, the issue is what will be the narrative that is promoted? Use offices above to influence dialogue about the SDGs. Also, the Incheon strategy, UN housing rights
- Work with NGOs pushing for universal health coverage – make sure they don’t get it wrong! E.g. Oxfam. Tell them to be careful and not to do more harm than good. Influencing global networks pushing medical agendas.
- IDA influence on Thematic meeting, OECD / ILO, and other associated advocacial efforts within larger global cross disability movement.
IDA will work on a 5 page report along with Alberto, for taking next steps.