#WhatWENeed Campaign

Full CRPD Compliance for the Inclusion of persons with psychosocial disabilities / users and survivors of psychiatry, worldwide

 

 

Partners for reframing from MH to Inclusion, this International Mental Health Week, 2018[1]

Persons with psychosocial disabilities, users and survivors of psychiatry, people with “mad” identities and other identities thereof, are herewith calling for support to have our voices amplified through this International Mental Health Week, 2018.

It is a huge development in the last years, that the Reports from Special Rapporteur (Disabilities), Reports and statements from the Special Rapporteur (Health),  the Mental Health And Human Rights Report (2018) from the Office of the High Commissioner for Human Rights, several lessons learnt from the work of the CRPD Monitoring Committee, particularly the General Comments on Legal Capacity, Women, Living independently and most recently, Participation; and allied UN bodies have issued very strong statements supporting moves to realize all human rights of the CRPD for persons with psychosocial disabilities. This is also supported by far reaching policy changes worldwide, on enabling full CRPD compliance.

The medical model, through the “Global Mental health Movement”, is all set to blaze its trail through Low and Middle Income Countries of the world (LMICs), since the first Lancet issue in 2007, around the same time as the adoption of the CRPD.   Around the World Mental Health Week of 2018, several enabling agencies, are set to conduct the “Global MH Ministerial Summit” in London.

In a way that the cross disability movement is not used to anymore; contrary to the CRPD, of ensuring full and effective participation of persons with disabilities; and contrary to the spirit of the World Disability Summit, this summit is being designed and conducted without any transparency or participation of persons with psychosocial disabilities and users and survivors of psychiatry.  According to the website, which is sparse in information, a Lancet paper is also promised to be released at this time, which has aroused the ire of the movement of persons with psychosocial disabilities, their supporters and their allies, worldwide; but especially in the Low and Middle Income Countries, where such moves are predicted to have maximum impact.

In a deliberate response to those complex new developments worldwide, a “Bali Declaration” [Full Text of the Bali Declaration] was issued by TCI Asia Pacific in August, 2018, affirming once again a call to CRPD commitment and reframing mental health in the direction of Inclusion.

The “North driving the South” phenomenon has evoked strong counter response from TCI AP and allied organizations (from Africa and Latin America); especially when we know by now, that the western model of psychiatry, based on colonial practices of isolation, and coercion; and offering little more than medication, is a failure. The Declaration, in expressing alarm at the import of models and the impending violations in human rights, needs more universal visibility and advocacy, in all parts of the world.

Further, the World Mental Health Week is considered by TCI AP to be, most appropriately, the space to occupy by users and survivors of psychiatry, persons with psychosocial disabilities, “mad” people and those with other identities thereof.

TCI AP is concerned that, the GMH movement seems to be aiming for world eminence in setting the lowest standard of the CRPD.  It is unusual for a professional group to continually contest and take down international standards by several notches, as they have been doing in the last decade, by setting a counter strain of CRPD interpretation, especially on Articles 12, 14 and 19.  It is curious how a particular group of medical professionals can overwrite  CRPD monitoring committee; CRPD interpretations emerging from courts; as well as ratifications and commitments made worldwide by member states.

Instead of engaging in constructive actions of community development, our movement is thus having to create new and continuing critical messaging, and advocacy with member states, reiterating our advocacy for full CRPD compliance  and our right to live in the community.

TCI AP has been decisive in the last 2 years to shift the focus on advocacy away from solely challenging violations of rights, especially within mental health systems, to promote a set of policies of practices that have inclusion across policies and services, in line with article 19, as core principle, process and outcomes.

Join us to collectively, across regions and boundaries, to express our concerns at,

#WhatWENeed:  We need Full CRPD Compliance!!

 

Find us on Twitter at  #WhatWENeed

Find us on FaceBook at TCI AsiaPacific

The Campaign is open from 1st October – 30th November 2018

Contact at   tciasia.secretariat@gmail.com

 

[1]  TCI Asia Pacific has been an organized DPO of persons with psychosocial disabilities since 2014, but was started in the context of the CRPD, mobilizing since 2012 in the Asia Pacific region.

 

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Full Text of the Bali Declaration

Transforming Communities for Inclusion- Asia Pacific

[TCI Asia Pacific]

 

We,  persons with psychosocial disabilities and cross disability supporters from 21 countries of the Asia Pacific region, in Bali, on August 29th 2018, and at the Plenary meeting of Transforming Communities for Inclusion –  Asia Pacific [TCI Asia Pacific], [1]

Hereby confirming

  • The systematic and pervasive violation of all our human rights; including all forms of discrimination, exclusion, violence, inhuman, degrading and torturous treatments taking place, in higher and lower income countries; in cities and rural areas; in outer islands; in institutions and communities; in schools, universities, health care centers, and in social services.
  • The failure of the most current, and new policy responses framed by the medical model which are restricting freedom, choice and opportunities; the gatekeeping by the mental health system, by assessing, conditioning, controlling and restricting our exercise of our rights; often ignoring resources for inclusion within communities, cultures, belief systems that may increase our choices and chances of full inclusion.
  • Those policy responses often centered on mental health do not comply with international human rights standards and, frameworks provided by various international Conventions and treatises, most importantly, the UN Convention on the Rights of Persons with Disabilities [CRPD].

Encouraged by the progress made by some countries in the region ensuring the inclusion of persons with psychosocial disabilities within policies and legislation for the inclusion of all persons with disabilities, in accordance with the CRPD; confirming the absolute relevance of the paradigm shift towards ‘inclusion’ and away from medical model or a sole focus on ‘mental health’;

Alarmed by the extent to which even the most progressive mental health environment still control and deny our rights to education, work, have a family, access to social protection, food, basic needs and an adequate standard of living; rights to vote, life and liberty, equal recognition before the law, among all other rights guaranteed by the human rights framework;

Among the issues of sustained discrimination, and exclusion of persons with psychosocial disabilities,  we highlight as grave:

  • The growth of new mental health laws in the Asia Pacific region with core provisions of involuntary admission and treatment; often leading to highest rates of stay in psychiatric hospitals [2]; the terrible conditions in mental institutions, including physical and sexual abuse of people with psychosocial disabilities of the region [3]; risk of life due to infections, starvation, malnutrition, direct shock treatment (Shock treatment without the use of anesthesia)[4] , unregulated use of restraints and solitary confinement, and other inhuman, degrading, and torturous treatments;
  • Violations in the families and communities- including pasung, (shackling) a practice commonly found; being cast out and deprived of all access to any kind of family, or community engagement; seclusion in inhuman, degrading, cruel and torturous conditions within social care institutions, unregulated houses, shanties and animal coups;
  • The complete silencing of voices of persons with psychosocial disabilities through State sanctioned discrimination using incapacity laws more frequently practiced in the Commonwealth; the systemic discrimination against our inclusion within development especially of women, children, LGBTI, indigenous and other groups otherwise facing multiple discriminations in our societies.

That, such concerns are not being a sporadic occurrence but confirmed as frequent occurrences, in all parts of Asia Pacific; deeply embedded within legal, normative, and social structures; being reinforced by colonial, historical traditions set within national laws;

That, such violations in law and practice cannot be addressed by marginally improving mental health systems that perpetuate the denial of human rights in the name of ‘our best interest’, but by adopting the full shift of paradigm of the CRPD towards inclusion in accordance with our choice, will and preference.

Recalling,

  • Commitments of all UN members states to implement the sustainable development goals to leave no one behind reduce inequalities and empower and promote the social, economic and political inclusion of all,
  • Obligation of most Asia-Pacific countries that have ratified the CRPD topromote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity, autonomy and independent decision making, on equal basis with others
  • Commitments of all Asia Pacific states to “Make the right real” for all persons with disabilities through the implementation of the Incheon Strategy
  • Commitments of Pacific countries to the Pacific Framework on the Rights of Persons with disabilities

Recognising,  that an inclusive implementation of Sustainable Development Goals and the full realisation of human rights mutually reinforce each other,

Welcoming,

  • The concluding observations and recommendations of the UN CRPD committee to Asia – Pacific countries to date, as well as the General Comments on Equal Recognition before the law (Art 12)[5], Women with Disabilities (Art 6)[6], Living independently and being included in the community (Art19)[7], Non-discrimination and equality (Art 5)[8] among others,
  • The reports of the UN Special Rapporteur on the Rights of Persons with disabilities to the UN Human rights Council on Social protection[9], Inclusive policy[10], Legal capacity[11] and participation and rights-based support for persons with disabilities [12],
  • The report from the Special Rapporteur on the Right to highest standards of physical and mental health to the human rights council on Mental Health, statement on the “corruption” in the mental health systems around the world[13] and the denunciation of the “global burden of barriers” faced by persons with psychosocial disabilities[14],
  • The 2017 Human Rights Council Resolution on Mental Health and Human Rights[15], including call to address the underlying social, economic and environmental determinants of health; to abandon all practices that fail to respect the rights, will and preferences of all persons; de-institutionalization; to prevent over medicalisation and to promote and respect the enjoyment of the rights to liberty and security of person and to live independently and be included in the community.

In full realization of all human rights as enshrined in the CRPD, and especially the human right to live independently and be fully included in communities (Article 19, General Comment 5), we want (1) to be able to decide our place of residence and who we want to live with (2) have access to a range of in home, residential and / or community support services nearby our places of residence (3) be included in all services available on equal basis with others and (4) all services should be responsive to our specific needs.

Call for Actions

That recognize, inclusion of persons with psychosocial disabilities involves a paradigm shift and reframing of policy environment from medical model to social model; mental disorder to psychosocial disability; public health to inclusive development; institutionalization to inclusion; treatment to support systems, evoking the guidance of CRPD and the SDGs to bridge such reframing;

  • That will place Inclusion of persons with psychosocial disabilities as the purpose, process and outcome of all social, legislative, policy, program, service actions, across all sectors, involving all actors including, but not limited to health care, and within all Development agendas, plans, programs, and partnerships for change,
  • Going beyond recent harm reduction approaches for example, by the WHO, to revive and reform towards “humane” mental health care; and also expressing apprehensions about the continuing “reform” efforts to maintain the systemically flawed, archaic colonial designs of psychiatric detention; and concerned that the WHO Quality Rights[16] would be wrongly considered as the solution to our problem of inclusion,
  • Adopting the movements for non-violent, peer led, trauma informed, community led programs, healing, cultural practices preferred by local groups of persons with psychosocial disabilities; attentive to the movement of non-medical alternatives worldwide, and in the Asia Pacific region; and progressive models for support in the communities,

We submit, the following measures be realized, with the due consideration that persons with psychosocial disabilities be engaged at every step-

  • The right to education be realized within all educational systems supported by reforms towards lifelong learning; access to alternative and augmentative means of communication such as non verbal / arts based expression; reasonable accommodation; access to flexible programs and a range of support services; prohibition of hazardous, forced or over medicalization and institutionalization of children;
  • The right to work and employment be realized with the inclusion of persons with psychosocial disabilities in all job markets, employment exchanges, job placements and support for livelihood opportunities; provision of support, flexible hours and reasonable accommodation within work places; disability benefits at work, on equal basis with others; due recognition of contributions; possibilities of professional growth, access to trainings, promotions, etc. on equal basis with others;
  • The right to adequate standards of living and social protection be realized for the inclusion of persons with psychosocial disabilities in all social security programs; the right to food ensured; the right to housing being of utmost importance, especially for relieving the persons in detention / shackled in the region, to prevent institutionalization and to live in communities; social protection schemes to help persons to escape poverty and to thrive; such schemes  be designed to ensure the dignity, respect, autonomy and independent living of all persons with psychosocial disabilities.
  • The right to health care be realized including comprehensive general health care, on equal basis with others; that psychiatric care does not become a barrier to access highest standards of health and wellbeing; that reporting of iatrogenic concerns by persons with disabilities and their families (for example, zombism, tardive dyskinesia, Parkinson’s, psychosis, suicidal ideation and behaviours, in addition to metabolic, cardiovascular and other general health complications) be recognized and addressed; various kinds of culturally sensitive healing and well being methods, including diet therapy, yoga, tai chi, qi gong, meditation, trauma informed counselling, talk therapies, arts therapies and other, be available within health care coverage;
  • Program measures be available for de-institutionalization, ensuring community support systems, such as personal assistance, community circles of care, peer support, formal and informal networks for support, family empowerment, listening spots, refuge / drop in / quiet rooms, spaces for creative expression, personal insight building especially about crisis, support persons trained to dialogue and negotiate the safety on the basis of the will and preference of persons with psychosocial disabilities, support to be available nearby where the person is living, especially concerning the homeless, and environments of peace and safety within communities;
  • The Right to political participation is ensured in all countries of the region, especially the right to vote, stand in elections, and hold public office;

We recommend,

That, our right to full and equal recognition before the law be immediately recognized by all countries in our regions; that laws be so harmonized with the CRPD so that noone with a psychosocial disability shall ever be denied a civil, social, political, economic or cultural rights on the basis of “incapacity” or “unsoundness of mind”;  that the legal system be cleansed of its colonial legacy, especially in the Commonwealth;

That, the dictum of “Nothing about us without us” be ensured in all processes including the development of technical, ethical and other guidelines, policies, legislations, and any other efforts towards our inclusion;

That, all United Nations and allied agencies, aid agencies, and global actions of governments towards the development of our regions, including the WHO, to consider our participation and inclusion in all co-operations towards inclusive development; that all such actions be mindful of the paradigm shift from mental health to inclusion;

We aspire,

  • To the extent that all such progressive actions for our inclusion are in our interest, to contribute to those actions through co-operations on trainings, capacity building, guidance on inclusion, research and any actions thereof, towards re-directing the legislative and policy environment towards inclusion; 
  • To work with organisations whose goals are aligned with ours, and which respect the principle of leadership and full and effective participation of persons with psychosocial disabilities and our expertise on all matters that concern our lives and our rights, in the drive for social change;
  • To have a meaningful place in our societies, be it through paid work, social justice work, creative work, informal care and support work, or so on. We believe that an environment that facilitates the full development of our human potential in all its diversity will also further the social, economic, cultural and political advancement of our societies.

 

Declaration adopted by TCI Asia Pacific

5th “Classic Edition” Plenary of TCI Asia Pacific,

Bali, Indonesia,

29th August 2018.

 

 

 

 

 

Email: tciasia.secretariat@gmail.com     Web: https://tci-asia.org

[1] TCI Asia Pacific is an Asia Pacific alliance of persons with psychosocial disabilities from the Asia and Pacific regions, and their cross disability supporters, from 21 countries. The vision of TCI Asia Pacific is the implementation of CRPD for all persons with psychosocial disabilities. TCI Asia Pacific is focussed on expanding the pedagogy and practice, of the inclusion of persons with psychosocial disabilities (Article 19 of the UNCRPD).

[2] Korean DPO and NGO Coalition for parallel report on CRPD (2014). INT_CRPD_CSS_KOR_18207_E. After the new mental health was implemented, over 90% admissions are involuntary. Average stay in mental hospitals is 247 days; 3693 days for those living in psychiatric sanatoriums.  See  CRPD Monitoring Committee List of Issues in relation to the initial report of the Republic of Korea. CRPD/C/KOR/Q/1 of 12th May, 2014.  

[3] Human Rights Watch, (2014). “Treated worse than animals. Abuses against women and girls with psychosocial and intellectual disabilities in India”. https://www.hrw.org/report/2014/12/03/treated-worse-animals/abuses-against-women-and-girls-psychosocial-or-intellectual

Human Rights Watch, (2016). “Living in Hell. Abuses against people with psychosocial disabilities in Indonesia”. https://www.hrw.org/report/2016/03/20/living-hell/abuses-against-people-psychosocial-disabilities-indonesia

[4] Center for Advocacy in Mental Health (2006). “ECT in India”.  http://www.ect.org/?p=551, accessed online on 04-09-2018

[5] CRPD /C/GC/1, (2014) CRPD General Comment 1 on Right to Equal Recognition before the Law.

[6] CRPD/C/GC/3 (2016) General Comment on Women with disabilities.

[7] CRPD/C/GC/5 (2017) General Comment on Right to Living independently and being included in community.

[8] CRPD/C/GC/6 (2018) General Comment on Equality and Non – Discrimination.

[9] A/70/797

[10] A/71/314

[11] A/HRC/37/56

[12] A/HRC/34/55

[13] A/72/137

[14]A/HRC/35/21

[15] A/HRC/34/32

[16] WHO Quality Rights Initiative (2017). http://www.who.int/mental_health/policy/quality_rights/en/

Outcomes of the Bali “Classic Edition” TCI Asia Plenary Meeting

TCI Asia plenaries are held every 2 to 3 years, where we try to create learning platform with contemporary issues of concern for us in the region.   The plenary forms an important space for new and old member country DPOs and individuals (where no DPO exists yet), from Asia (and now Pacific, too!) to come together, learn and share, build a regional vision and advocacy actions together.  21 countries and about 70 persons with psychosocial disabilities, and cross disability supporters, participated in the Bali Plenary from 26-29 August 2018, at Hotel Ayodhya, Nusa Dua.

Important outcomes are:

  • We renamed ourselves as “TCI Asia Pacific”, and we will cover the South Asia, South East Asia and Pacific regions. 

  • We adopted new countries (Maldives, Myanmar, Malaysia, Singapore, Vietnam, Fiji, Tonga, East Timor, HongKong) as members. 

  • As a way of responding to the forthcoming International mental health week, and showing our concern about the medical psychiatric expansion throughout our region, increasing the “global burden of barriers” for us, we adopted the “Bali Declaration”.   

 

The Bali Plenary was a huge success, in terms of outcomes. Country DPO groups are being formed,  emerging leaders who have been associated since long with our movement, are moving ahead in their national advocacy on Inclusion, and we are keeping ourselves updated about developments in global spaces.

Our learning thematic this year was, Inclusion in Development.  Our studies on Inclusion over the years has brought to us the knowledge that there are two “gates” through which a person with psychosocial stress, distress or disturbance, and the people in their environments,  may enter. One is the “Mental health” gate, the other is the “Development” gate. The first one leads to lowest minimum options (medication, institutionalization) and more often, the closure of the second gate, because of colonial laws widely prevalent in the sector. This closure of opportunities leads to “chronicity” and high support needs (which are not available in reality.)

Whereas, entering through the second gate is inclusive of the first gate also. A person may have access and opportunity to different kinds of supports and services in the community, among which health care may be one.

Watch for our Campaign in the International Mental Health Week, 

#WhatWENeed on Twitter 

#WhatWENeed on Facebook 

 

 

 

Brief Report: Realizing Article 19

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)[1]  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. [2] 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:

  1. Reframing public opinion – what are the options?
  2. Movement/alliance building (internally of the movement)
  3. Strengthening evidence and research (What works, furthering evidence)
  4. Exploring new alliances (broadening the circle, gender, environment,…)
  5. 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).
  1. 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.
  1. 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.

  1. 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.

[1] http://www.who.int/disabilities/world_report/2011/en/

[2] http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CallDGDtoliveindependently.aspx

Civil Society Response to COSP Background paper “Promoting the humanrights of persons with psychosocial and intellectual disabilities”

camhjournal

Promoting the human rights of persons with psychosocial and intellectual disabilities

 

Note by Civil Society Co-ordination Mechanism

 

The present document was prepared by a small working group for the Civil Society Co-ordination Mechanism, on the basis of available information, towards the round-table discussion on the background paper, “Promoting the rights of persons with mental and intellectual disabilities”, to be held at the ninth session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities, New York.

The members of the Civil Society Co-ordination Mechanism are extremely concerned that the background paper is developed completely within the bio-medical paradigm, and not the social paradigm as framed by the CRPD. The paper, while promoting the global mental health agenda of ‘filling the treatment gap’, remains silent on the topics of forced institutionalization, coercive psychiatry, and the vexatious continued use of inhuman, degrading, cruel treatments…

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Reshma Valliappan on International Women’s Day 2016

Reshma Valliappan, also known as Val Resh, is an artist-activist for a number of issues related to mental health, disability, sexuality and human rights. She lives with schizophrenia without medication and is providing the early voice and leadership for persons living with mental illness to speak and advocate for their own rights. –

 

See more at: http://www.patientsengage.com/news-and-views/irrespective-mental-health-issues-family-friends-must-respect-woman#sthash.LKd5Q3OK.dpuf

Invitation to the Inclusion survey

The Bapu Trust in collaboration with TCI-Asia is compiling a Survey Report on

‘Good practices on the Inclusion of persons with psycho-social disabilities’

 covering the Asia region. The report will cover the present status of Inclusion of people with psycho-social disabilities; and  good practices that will facilitate full and effective participation and inclusion in communities.

The survey invites your views on Good Practices on the Inclusion of persons living with (or who have experienced) mental health problems/psycho-social disability. Your participation in this study is crucial to understanding the evolving state of inclusion of persons with psycho-social disabilities: What facilitates their full and effective participation in families and communities?

The survey is an online Google survey. The form is in English, and will take about 20 minutes to fill (not including any translation time that may be involved.)

A big motivation for this study is to find out, what means “Reasonable Accommodation” (RA) for persons with psycho-social disabilities. In the disability movement, implementing RA is considered as key for full and effective participation. What is RA for persons with psycho-social disabilities?

We invite you to participate in the survey. Please also share in your networks, and invite your peers to participate in the google survey.

Shikha Aleya at shikha.aleya@gmail.com is co-ordinating the survey for TCI Asia. Do get in touch with her for any clarifications or questions.

Please follow the link below to participate in this survey:-
We request you to please share this link and invitation to participate, with all members of your network who self identify as persons with psycho-social disabilities.
The survey will be open for your kind participation till the 15th of February 2016.