Turning the tables: The imperative to reframe the debate towards full and effective participation and inclusion of persons with psycho-social disabilities Excerpts from “Galway-Trieste” conversations – Part V

Finally, the identities of constituencies represented in these conversations have been diverse, including persons with psychosocial disabilities, users and survivors of psychiatry, ex-users of psychiatry, persons with \”mad\” identities, people who hear voices, etc. Is it one movement or many movements? Is there a cultural divide in advocacy and voices of representation? It is clear that emerging national voices who have not yet had a chance to understand the politics or the history of psychiatric power are snatched away by the psychiatric vigilante who today speak the language of \”progressive mental health\”. It took us many years to figure out that that pathway was a trap and that we needed to search for another entry point. There is promise in present times among regional movements and nationally, as the CRPD kicks in, that monitoring processes are more inclusive, concluding observations unambiguous and the world is turning towards inclusion of persons with psychosocial disabilities. This is the final part of the series concluding with the responsibility of our constituency in standing up for ourselves and our human rights.

Reflections on the movement of persons with psychosocial disabilities

Since the adoption of the CRPD (which was in itself a great success with provisions related to equal recognition before the law, liberty and security and person integrity, health;), the sum of activism has contributed to:

  • Emergence of a global progressive normative framework on inclusion
  • Greater CRPD understanding within the movement, more rights and inclusion perspective
  • New people and organizations from human rights or disability sector have been willing to engage
  • Strong leadership in some countries
  • Greater engagement with the cross-disability movement with regards to CRPD monitoring and extant legal harmonization
  • Engagement with UN processes has provided capacity building opportunities

However, it was acknowledged in the Triest-Galway conversations that paradoxically, the global movement of persons with psychosocial disabilities did not succeed to build on the CRPD momentum to consolidate and develop as a unified worldwide movement.

As mentioned in Part IV of this series, there was an acknowledgement of the need to develop a broader canvas without weakening the initial agenda, to engage with disability, development, gender equality stakeholders and tackle issues such as social protection, housing, livelihood, access to services.

However, many questions were open: Do we contest the extreme? Do we address the
Movement for Global Mental Health? Do we directly and immediately address places of power? Do we start at the end of \”recovery\” or do we focus on inclusion? In Norway, for example, there is little space to talk about \”inclusion\”. We need to address questions of \”torture\” over there, through court cases, lawyers, CAT, SPT, etc. addressing our issues on mental health and coercion within the scope of torture standards.

From the long conversations, emerged the agreement that to be able to reframe the global momentum there is a need for a regeneration of the movement of persons with psychosocial disabilities that would reflect common challenges but also the diversity of contexts and priorities.

This last part of the series will tackle the discussion about the state of play of the movement and the way forward as emerged out of these conversations.

State of play of the movement :
Intrinsic barriers faced by the constituency and the need for capacity development

There are different reasons for this evolution that are in many ways similar to the difficulties of any social movement. One of the key reasons is the fact that the global movement of users and survivors of psychiatry and persons with psychosocial disabilities, unlike other global disability groups such as blind people or deaf people, does not have strong well-resourced national organizations except only in very few countries and is rather a network of individuals and informal groups.

The challenges faced by the constituency include great marginalization and stigma, risk of increased discrimination when engaging publicly as self-advocate, legal issues with building the organization, continuing strong influence of medical professionals, quick appropriation of emerging leaders by the \”progressive\” medical professionals and lack of support that would enable more people to take part. There are issues around identities which undermine a consistent messaging and convergence: persons with psychosocial disabilities, people with mental health issues, mental health users, ex-patient, users and survivors of psychiatry, persons with \”mad\” identities. Those issues have rendered the development of strong grass root national movements challenging which in turn has limited the sustainable structuration of a global movement.

There was an emphasis on the fragility of the movement as in many countries where there is actually no real movement. In some countries, existing groups are co-opted within the frame of existing policies and services (users’ organizations that are framed by service providers for instance) and they are not politicized in the sense of seeking change in power structure. It takes some persons many years to understand the politics of power and by then, co-optation already has happened.

There was an overall agreement that much more needs to be done in terms of capacity building. There was consensus that peer support is always important and appear as one way of both building movement while providing much needed support. In parallel, there is a need for more CRPD training which would also seek linking the CRPD to local legislation as well as invest in practical approaches that demystify the medical model which many people have internalized.

Those trainings need to be differentiated with a tailored way to approach group with CRPD:

  • At grass root level: focus should be on key principles and provisions not the whole CRPD. Need an approach that resonate with grass roots.
  • Training should also include national policy provision and help tackle key issues of daily life such as the real life of how do we fight for housing, jobs, services that are needed? It should help the creation of peer support groups among others.
  • At national level, there is a need to go deeper and provide skills related to legal harmonization and budget advocacy, how to use human rights institutions.

As for training, the importance of grass roots was highlighted with movement that should ensure representation from the village level to the national level. There is a need to look at how other movements mobilize people and conduct outreach.

There was also emphasis on securing resources so that key experts, trainers and mobilisers are getting paid for what they do within the movement but also for organizations outside the movement. If people secure income there would also be more people available for advocacy and outreach, coaching and mentoring. Investing also in provision of fellowship for emerging leaders could provide room for much needed time investment in movement building and advocacy.

Common and different challenges, common and different priorities

As mentioned earlier, the movement initially developed in higher income countries as a reaction to systematic violation of human rights and oppression by psychiatry and mental health systems which led to the development of users and survivors of psychiatry groups. This identity framed the focus and approach to CRPD negotiations with an advocacy focused on recognition of legal capacity, prohibition of coercion, involuntary treatment and confinement, in complement of the work with the caucus on the overall CRPD.

Groups in the Global South face traditional stigma, exclusion in the community, poverty and lack of any support services, rather than widespread oppression from mental health systems that do not exist nationally but may have impact on the urban middle class. While at first, those groups were supportive of the \”user survivor\” agenda which helped them emerge and get a direction, many found out that while relevant and important it was not matching priority and issues of the vast majority of their constituency. This led for a stronger focus on Article 19 – community inclusion and livelihood – while of course preserving attention to issues of legal capacity and coercion. It also led to greater work with disability and development organizations and identity movements.

On the other hand, in European countries, exchange revealed a sense that there is little space to talk about \”Inclusion\” due to the omnipresent gate keeping role of mental health systems and related legal framework. Activists have the urgency to address mental health, institutionalized and “legal” coercion questions through court cases, lawyers, within the scope of torture standards through CAT, SPT, etc.

Such concern with the grip of the mental health systems are also vivid in USA, Korea or other high-income countries such as Australia and much less in most low and middle income countries.

This inevitable emergence of diverse priorities linked to diverse contexts brought an additional level of complexity which rendered the steering mostly from the global level even more challenging. However, there was an emerging consensus that a dual approach which would combine reframing towards inclusion combined with sustained call for prohibition of coercion. Both \”mental health\” critiques and inclusion opportunities need advocacy.

The importance of the national and regional dynamic

As in other social movements, it is impossible even with substantial resources to support structuration of grass root movement from the global level. The emergence and development of TCI-Asia in recent years or the work of ENUSP in Europe among others have shown the importance of the regional level for supporting structuration and emergence of self-advocates organizations. In most countries, self-advocates are isolated and face great challenges in developing organizations. Membership in a regional organization provides a closer support and more culturally, economically and logistically relevant support.

During the Trieste workshop, the group tried to map and estimate the number of actual and potential activists in each region by level of commitment and advocacy/service related knowledge and skills. A diverse picture emerged. Some regions had less members and some had more; some regions had grassroots participation while fewer in active, leadership role. Some were trained for advocacy, others were not; etc. Some regions had higher members in some countries, in others there was more even distribution, even though there weren\’t many leaders at the regional level. However, a striking feature of this activity was that there were traces of a \’movement\’ in all the regions, stronger or weaker; nonetheless they were there. There were possibilities of building national, regional movements in all regions. It was also acknowledged that fundraising and operationalization work is easier at regional level than at global level.

Taking stock of the current situation, there was a sense that strengthening regions which in turn can support and facilitate peer support between countries is critical. The regional platforms focus on capacity building of national groups, development of culturally and regionally relevant advocacy and approaches.

It was acknowledged that there are some strong regional and national voices but there is little global coherence while there is an urgency to tackle global momentum and issues. Questions emerged on:

  • How can diverse groups collaborate together, speak with a unified voice, acknowledging common challenges but also diversity of issues and identity
  • How do we take decisions together and act together to have a global impact?

There was an emerging consensus that to tackle the global issues which impact regions and countries alike it might be more viable, effective and respectful of diversity for some regional organisations to work as independent partners coming together on issues with synergized voices at a global level on a coalition rather than attempting to have a one global structure encompassing all.

The way forward

At an international level, there was agreement to work on several blocks some of which have been addressed in Part III, IV of this series and also above.

  1. Continue and consolidate works towards human rights mechanisms:
  2. Treaty bodies
  3. UPR
  4. Special procedures
  5. OHCHR
  1. Invest in framing inclusion of persons with psychosocial disabilities and the mental health momentum in SDGs
    1. Linked to HLPF and strong linkage with SDGs discussion
    2. Engage with UNDP, UNICEF, WB, etc
    3. Invest in reaching out to the gender equality and women empowerment movement, SOGI focused organizations, development and human rights NGOs
  1. Developing models, piloting social innovation, mapping, classifying, assessing possible good practices. This could lead to a sort of creation of quality label/accreditation and help create some benchmarks that would influence development processes.
  1. Identify and develop a publicly available roaster of experts with and without lived experience that are supportive of the shift of paradigm and that we trust so that countries and development agencies would be guided in their search for technical assistance

Post script

Since the work on this report, important events of publications have taken place confirming the exchange summarized in this report.

  • The call from the journal of World Psychiatric Association to ignore some CRPD standards or even amend the CRPD to which ENUSP responded with support from other groups.
  • The Lancet Commission on mental health and the Ministerial Global Mental Health Summit illustrate well the fact that while MGMH increasingly acknowledges social determinants and inclusion, it cannot abide by CRPD standards. The MGMH even challenges the standards and validate interventions that originate and/or delivered by the mental health professions and system.
  • The emergence of a Latin America network of persons with psychosocial disabilities and neurodiversities.
  • The emergence of a new pan African network of persons with psychosocial disabilities.
  • The evolution of TCI Asia to TCI Asia-Pacific and its Bali declaration
  • The #WhatWENeed campaign in response to the Ministerial Global Mental Health Summit and the International World Mental Health week.
  • The Report of the Special Rapporteur (Disabilities) on \”Deprivation of Liberty\”.

Declaring that, the following report is an embargo of many months on this work which TCI Asia Pacific takes the responsibility to disseminate it widely. TCI Asia Pacific has supported the meetings financially and led the initiative in many other ways. We thank the many organizations that attended the meetings, IDA, and the co-facilitators, Alex Cote and Alberto Vasquez.