The UN Convention on the Rights of Persons with Disabilities entered into force early this May. The first session of the Conference of States Parties, which is to elect the treaty body responsible for the international monitoring of its implementation, will meet in November. Disability rights activists, Disabled People's Organisations (DPOs), civil society organisations are now busy with advocating for a universal ratification and meaningful implementation of the Convention.
Efficient advocacy requires consciousness. Advocates need to design and execute strategies that are capable to bring about the paradigm shift emerging in the Convention. As the old paradigm of pity, protection even at the cost of prevention of personal capability development, deficiency, charity has been ruling for centuries, we need tremendously powerful strategies.
There can be two different approaches. The top down strategy starts with CRPD as an international legal instrument. This deductive way explains what implications CRPD has for the lives of persons with disabilities. The strength of this method is the authority of international law. Its weakness comes from the very same: for many people international law is abstract and distant, hardly ever related to real life. There are so many examples of States' non-compliance with their internatioal obligations. This top down approach needs to work with the necessarily open textured Convention language, open to various interpretations. The one with better technical knowledge of law has better position in winning with their interpretations. Grassroots people and their movements are disadvantaged in this mostly technocratic competition of interpretation. The State and its concern is central in such a discourse. People's participation is seen as one of the State obligations, as it is in the text of the Convention, rather as the overarching sine qua non condition for bringing about social change with the leadership of persons with disabilities. Lawyers are the central actors who teach civil society, which is often sceptical about its usefulness. People who had been denied our opportunity to assert our rights to protect our dignity and interest have not had much benefit from the law. All these are hardly empowering for those whose rights are to be promoted and protected.
The bottom up strategy, on the other hand, starts with the already identified needs, aspirations, dreams and hopes of the grassroots. Looks at the Convention as a tool to strengthen our hands in our ongoing advocacy efforts. This gives us a chance to interpret the open textured language so that it reflects what we want to achieve. Interpretation then is no longer a technocratic game but an expression of the lived experiences of persons with disabilities. People's participation is not just an obligation of the State but the driving force and the medium of an open and broad human rights discourse and the Convention is a powerful framework for it. The strenght of this approach is given by the authenticity of people rather than the authority of law. Law becomes what it should be: empowerment of those who had been deprived of equal participation. Central actor is civil society with the leadership of persons with disabilities. They teach lawyers how to interpret the Convention. This approach is potentially much more empowering and the emppowerment comes from the process itself rather than from the good will of the State and of the legal experts.
Last weekend I participated at the Bapu Trustee and Staff Retreat. The meeting took place in a hill station, one hour drive from Pune on the Pune-Mumbai highway.
The retreat started with a session held by Amita and myself on CRPD. We adopted a bottom up approach, attempting at illustrating how CRPD reflects everyday work experiences of Bapu Trust.
Bapu Work Ethics and CRPD
- The first international human rights treaty in the new Millennium.
- Why was it needed?
- The rights enshrined in previous treaties are not accessible to persons with disabilities (pwd).
- The lack of reasonable accommodation, even in the absence of intention, results in social exclusion for pwd.
- What is the advantage of international law?
- Pressure of the international community.
- The advantages of international cooperation.
- Larger movement backing.
- Obligates states parties to develop, execute and monitor legislations, policies, programmes.
- Negotiating history
- Adopted within five years – a UN record.
- Unprecedented participation and contribution by civil society with the leadership of Disabled People’s Organisations (DPO).
- Record number of signatures at the opening.
- Purpose and Objectives
The purpose of the present Convention is to promote, 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.
- CRPD’s image of a human being
- autonomous with support and reasonable accommodation
- both same and different
- contribute to human diversity
- CRPD is a comprehensive human rights instrument covering civil-political (e.g. liberty, freedom from torture, integrity, participation) and economic-social-cultural (e.g. education, right to work) as well as developmental rights.
- What does CRPD mean for us in
- Impact of binding International Law on Indian law and policy
- Guiding Force for Change of Indian Law and Policy
- Despite its progressive character CRPD too remote from our work lives
- Limited bearing on the legal dimension of our work
- Relevance of this forward looking instrument to Bapu’s Work
- Right to participation and Awareness Raising
- Concept of Reasonable Accommodation
- Legal Capacity and Support
- Awareness Raising
States Parties undertake to adopt immediate, effective and appropriate measures:
(a) To raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities;
(b) To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life;
(c) To promote awareness of the capabilities and contributions of persons with disabilities.
- Awareness Raising at Bapu
- Relationship between internal work culture and social advocacy
- Presence of user –survivor
- Perception towards and perception of user-survivors
- Interpersonal Relations
- Service provision
- CRPD: The Right to Participation
In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.
- Right to Participation at Bapu
- Relationship between participation and awareness raising
- Various Models of Participation
- each person involved in decisions affecting them
- all persons to understand the mental health advocacy positions in Bapu
- persons with disabilities to be actively consulted in the formation of all Bapu policies
- CRPD and Reasonable Accommodation
- Non Discrimination means that persons with disabilities are treated on an equal basis with others
- It also means that general policies are modified and altered to accommodate the specific needs of particular persons with disabilities
- This customisation of general policies is called reasonable accommodation
- Reasonable Accommodation at Bapu
- Concept of Flexible Time
- Idea of Safe Spaces
- Giving Value to Varied Perceptions
- Insight these Accommodations provide to general policy
- CRPD : Legal Capacity and Support
- All persons with disabilities have both capacity for rights and capacity to act
- Realization of capacity to act may require support
- Support to be provided in an empowering and non threatening manner
- Capacity and Support at Bapu
- Support Mechanisms Available in Different Parts of the World
- Provisioning of Support in Bapu
- Developing of Suitable Designs for Support
The mere fact that the United Nations, against all the fears of the inflation of human rights, adopted the Convention on the Rights of Persons with Disabilities, demonstrates that we, people with disabilities, have been lacking equal recognition in our societies. Disability, according to the social model, comes from the barriers created by the inadequate societal response to the person's impairment. Barriers result in social exclusion: persons with disabilities are socially excluded persons. Adults with intellectual and psychoscial ( mental health) disabilities often have a legal status less than of an adult person. Legal incapacitation through guardianship and other forms of substitute decision making deprive us from the capacity to act. Attitudinal and legal barriers need to be removed along with physical, communicational and informational barriers. There is no easier, more "Royal" way to implement the UN CRPD.
Disabling laws need to be replaced by enabling ones. This will require tremendous legislative work, and in that endeavor persons with disabilities need to play a decisive role as demanded by CRPD. Enabling laws then need to be used as frameworks for societal action with the view of full inclusion of all persons with disabilities, in all fields of life.
My recent experiences both in Hungary and in India make me cautious: the involvement of persons with disabilities through their organisations, while necessary, will not be sufficient to get closer to the CRPD objectives. Let me reason why I think so, and then let me come up with proposals on how full inclusion can be achieved.
Social exclusion, among other things, has also prevented persons with disabilities to be equal part of the public sphere. The public sphere is an area in social life where people can get together and freely discuss and identify societal problems, and through that discussion influence political action (http://en.wikipedia.org/wiki/Public_sphere). Jürgen Habermas, in his historical analysis of the public sphere (Habermas, Jürgen (German (1962) English Translation 1989). The Structural Transformation of the Public Sphere: An Inquiry into a Category of Bourgeois Society. Cambridge Massachusetts: The MIT Press, p 36), identified three principles that govern the institutionalization of the public sphere: disregard of status of the person; domain of common concern enabling the sphere to problematize areas that hitherto have not been questioned; inclusivity to enable everyone to participate.
None of these has been typically the case for persons with disabilities. Legal incapacitation is the clearest example for how the disregard of status principle is breached: persons under guardianship are legally deprived of being part of the discourse. More subtle forms of the violation of the disregard of status are rooted in the prejudices, stereotypes and stigma associated with disabilities.
Disability as an issue has only recently become a common concern. Only a few countries have enacted legislation on the rights of persons with disabilities and comprehensive action plans, regional, national or local, are exceptional. Even in those countries where such laws and plans exist, persons with disabilities have been hardly in a position to contribute to the problematization of areas, at best we have been consulted on ready frameworks. Existing democracies, more or less functioning on the grounds of a social contract tradition, do not feel the need to deal with the concerns of those who are seen as lacking the capacity to be and to act independently and rationally, as societal cooperation in this tradition is based on mutual adventages of parties of approximatly equal power. What is adventageous, in the framework of the social contract tradition, shall be decided by contractors as independent actors of relatively equal stature, thinking rationally. (A good critique of the Rawlsian approach can be found in (Nussbaum, Martha C. (2006). Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge Massachusetts: The Belknap Press of Harvard University).) Consenquently, the concerns of persons with disabilites as perceived by themselves, have become common concerns only accidentally.
The problems with inclusivity of the current public sphere are obvious. Accessibility and reasonable accommodation are still goals to be achieved.
Conventional consultations with persons with disabilities will be unlikely to bring about the needed change in the nature, attitudes and interactional dynamics of the existing democratic public sphere. And without such change people with disabilities remain excluded, albeit at a different level of exclusion. Consultations with disabled people's organisations only will not create broad enough consensus in society at large on what needs to be done to end exclusion and promote full inclusion and equality. In a broader consultation with all the stakeholder groups there is no guarantee that people with disabilities' agenda will substantiate the problematization on disability. Tokenism in such broad consulations is so typical that one needs to believe there are systemic causes for tokenism. I submit that because of the historical deprivation and power imbalance, more powerful stakeholders do set the agenda and the rules for discourse. In this process powerful stakeholders stakes are mistakenly defined as rights, forgetting that rights are to be asserted by the powerless to empower them to end exclusion. The most bizarre, though not at all exceptional example I know of is the Social Care Act in my country, which lists the regulation of physical and mechanical restraint in psyhiatric institutions among the rights of the user.
Isn't there a way out? In my opinion a multi-level deliberative approach may be successful. Deliberative democracy has a number of techniques which, if employed properly, can ensure both the leadership role for people with disabilities in the societal problematization of disability and the broadness of the societal discourse needed to create the necessary ownership in society at large.
What is deliberative democracy?
"Deliberative democracy rests on the core notion of citizens and their representatives deliberating about public problems and solutions under conditions that are conducive to reasoned reflection and refined public judgment; a mutual willingness to understand the values, perspectives, and interests of others; and the possibility of reframing their interests and perspectives in light of a joint search for common interests and mutually acceptable solutions.
It is thus often referred to as an open discovery process, rather than a ratification of fixed positions, and as potentially transforming interests, rather than simply taking them as given. Unlike much liberal pluralist political theory, deliberative democracy does not assume that citizens have a fixed ordering of preferences when they enter the public sphere. Rather, it assumes that the public sphere can generate opportunities for forming, refining, and revising preferences through discourse that takes multiple perspectives into account and orients itself towards mutual understanding and common action.Deliberative democracy in its predominant usage today means expanding the opportunities of citizens themselves to deliberate." (Carmen Sirianni and Lewis Friedland, http://www.cpn.org/tools/dictionary/deliberate.html)
Study circles of people with disabilities deliberate on what shall be on the community's agenda to dismantle disability-based exclusion. Then citizens' juries with participation of experts with disabilities formulate recommendations on law and policy making. This can be followed by a broad and open consultation, making use of accessible information technologies, on the issues identified by the study circles. A deliberative poll shall accompany the broad consultation. This poll shall give an evidence on how members of the community at large change their attitudes after being informed by the expertise coming from the study circles and citizens' juries. This then can be used as an evidence base for and by the law and policy makers.
This process is inherently empowering and contributes to capability development both in the communities of people with disabilities and in society at large.
Together with colleagues from the Hamsayeh Peer Support Group I have been involved in the creation of a material that can be used to train self-advocates working in the field of mental health. The material is prepared in a series of conversations on self-advocacy, mental health, dignity and fundamental rights. The sessions are recorded, then transcribed.
The conversations have been most educational for me. I had to go back to the basics and understand again the intimate links between self-advocacy and peer support. The objective of self-advocacy is to exercise the right to express freely, to promote self-determination and protect dignity in the field of mental health, where both in the institutional system of psychiatry and in the informal systems of family and community all these rights are at permanent risk to be ignored. Self-advocacy is rather a process than an act and negotiations play central role in the process.
I am grateful for the title "Self-Advocacy: The Art of Negotiating; the Politics of Dignity" to my colleague Dalip Daswani.
Photo source: http://www.uexpressit.com/_StandUp_SpeakOut.jpg
With our global community, we develop models for collaboration and design infrastructure needed to advance the field of social entrepreneurship and the citizen sector.
Our Fellows inspire others to adopt and spread their innovations - demonstrating to all citizens that they too have the potential to be powerful changemakers."(www.ashoka.org)On the 18th September Bhargavi and I attended a meeting for newly elected Indian Ashoka Fellows. About 25 colleagues and some of the Ashoka staff participated in the meeting, which was part of a three day initiation to the world of Ashoka: The Global Association of Leading Social Entrepreneurs. 7 of the new Fellows work in the mental health and intellectual disability fields.
Bhargavi shared her experiences as an Ashoka Fellow and spoke about the collaborations she has been involved to strive for access to justice for people living with mental illness.
I gave an introduction to the Fellows Exchange Programme under which I spend this six month period in India. I spoke about my involvement with the negotiations of the UN Convention on the Rights of Persons with Disabilities and about how ow we are working on the implementation of it for people with mental health problems (psychosocial disability) both in India and in Hungary. Talking about the principle of "Nothing about us without us" I emphasized the importance of self-advocacy. The exchange programme gave us an opportunity to design democratic deliberations on the implementation.
Both Bhargavi and I were elaborating on what opportuntiy means in social change. What opportunity meant for us as changemakers in our endeavour to bring about tangible changes in the lives of people with psychosocial disability? How we can use legal and other forms of advocacy to create opportunity for ourselves and our peers.
"The Taj Mahal (pronounced /tɑdʒ mə'hɑl/ or pronounced /tɑʒ mə'hɑl/) (Hindi: ताज महल); Persian/Urdu: تاج محل) , is a mausoleum located in Agra, India, that was built under Mughal Emperor Shah Jahan in memory of his favorite wife, Mumtaz Mahal.
The Taj Mahal (also "the Taj") is considered the finest example of Mughal architecture, a style that combines elements from Persian, Turkish, Indian, and Islamic architectural styles. In 1983, the Taj Mahal became a UNESCO World Heritage Site and was cited as "the jewel of Muslim art in India and one of the universally admired masterpieces of the world's heritage." (http://en.wikipedia.org/wiki/Taj_Mahal)
On 12th September I was lecturing at the Jawaharlal Nehru University. My talk on "Uncertain Physics, Certain Psychiatry was organised by the Centre of Social Medicine and Community Health.
The paradigm of biomedical psychiatry, associated with the name of Kraepelin, was modeled on the Newtonian paradigm of physics. While physics underwent several radical paradigm shifts in the early twentieth century, bringing about the recognition of the inherent uncertainty in nature, biomedical psychiatry has not learned from these changes and still maintains the view of a certain world.
The hegemony of this reductionist view in psychiatry in conjunction with the widespread use of force to hospitalize and treat people against their will results in a mental health care sector that is not inviting for many of those who experience mental distress.
I argued that a prohibition of force in psychiatry would result in better mental health for the population at large. Alternative paradigms would be encouraged (or at least not marginalised), people in distress would feel safe to proactively seek help. The price to pay would be at most a marginal increase in violence committed by people in distress.
The lecture was well received. I got a number of invitations from various disability organisations and programmes.
- The keynote of the Lancet articles leaves no doubt that the major focus is the globalisation of Western mental health services and treatments to the developing world. Much is said about evidence based drug treatment and (Western based) community mental health services and nothing, or just negative things are mentioned about the traditional community resources and healing methods available in developing countries, such as India. A famous (and because of the unexpected conclusions, repeated) major WHO study on the comparison between the prognosis of schizophrenia in a number of developed and developing countries has found that the outcome of this major mental health problem is significantly better in the developing world. The Lancet series, and the proposed campaign has not been informed by this finding. Advocating the globalisation of the Western, drug treatment based therapeutic regimes and services, when there is available scientific evidence that in the West major mental disorders have less promising prognosis, seems to be irresponsible.
- Low and middle income countries are seen as retarded societies and civilizations who need to be emancipated by the Western wisdom. The initiated global movement clearly has not learned from the pitfalls of our Western colonialism. Instead of advocating a global discourse on what mental health is and what resources, methods, frameworks have been developed in various cultures across the globe and over the centuries to promote mental well-being, the movement want to sell the industrialised Western approach.
- Human rights mostly means the right to treatment in this context. The Lancet series does not reflect upon its own self-contradiction: on the one hand involuntary treatment and hospitalization is mentioned as a human rights concern and source of stigma in the West, on the other hand there is no discussion on the causes of this reliance on force. Without such a deliberation advocating the right to treatment may easily end up in advocating force.
- Human rights violations in the traditional healing regimes are widely popularised. All this being done without listening to those who voluntarily seek help at traditional healing centers. The fact that no one can be legally coerced to traditional healing, and all human rights breaches taking place in such centers are prosecutable offences, while caging people, depriving them of their liberty and their right to make own choices are backed by mental health laws and thus seen as lawful, is overlooked. Whether the declared full respect for the human rights of people with mental health disabilities is premised on this distinction? Depriving people with disability on grounds non-disabled people would never be lawfully detained is compatible with this "full respect"?
- The approach adopted by the global movement does not feel a need to seek evidence base for traditional healing. Pioneering scholarly work on the effectiveness of traditional healing, such as the one conducted by the Bapu Trust, is ignored.
- The entire movement is based on the premise that the task of defining mental health, developing indicators to measure it, is a professional task of the medics. What constitutes evidence is being decided by psychiatrists. Users of services are not seen as central experts in a broad, cross-cultural and multi-sectoral and interdisciplinary (i.e. genuinely global)discourse on what is mental well-being. No need for such a discourse is envisaged, as it is premised that medical professionals in the West and in intergovernmental organisations already know all the basics.
The global movement as it was initiated and as it has evolved so far is not a joint venture of equals. It is a colonisation attempt with hegemonical role and power of the Western industrialised countries, their psycho-pharmacological industry, which, if succeeds will globalise the legitimised human rights violations in the Western mental health sector. It is a hegemonical appropriation of mental health by the medical profession, ignoring the lived experience of the users and survivors of the services.
And this is certainly something that no one can want, who genuinely believes that human rights and human rights of persons with mental health disabilites are not two separate things.
What this may mean for our current day user/survivor advocacy is that we need to learn how to present CRPD in the language and historical context of the user/survivor culture. So far most of the advocacy efforts have started from CRPD and explain what it means for users/survivors. What the Gandhiji tradition tells me is that we need to follow the opposite way: let us go back to the user/survivor culture and link the values discoursed there with the CRPD. Then we can mobilise much more users/survivors than following the "let us translate CRPD to user/survivor language" approach.
Sources for the photos:
- Gandhi: http://www.khaasbaat.com/may2007/images/may07/gandhi.jpg
- King: Library of Congress. New York World-Telegram & Sun Collection. http://hdl.loc.gov/loc.pnp/cph.3c26559 Date=1964 Author=Dick DeMarsico, World Telegram staff photog
- Ambedkar: http://www.unm.edu/~rhayes/ambedkar.jpeg
Questions arising in Legal Advocacy
· What is meant by Advocacy?
· What is the purpose of Advocacy?
· Where do we situate the user – survivor
· The prioritization between stakeholders – psychiatrists, caregivers.
What is meant by Legal Advocacy?
- Filing test cases
- Client centered Legal Advocacy
- What should dictate the filing: the possibility of winning or the needs of the client.
- The travails of varied opinions between u/s groups in the process of consultation for law reform
- How should the varied opinions of different groups be addressed in law reform exercises?
- At present the differences are being handled on a cats& monkey strategy , necessary to ask how should negotiation be undertaken and resolution obtained?
- How to ensure that the consultation of stakeholders is a real and not a symbolic one?
What to do with litigation outcome?
- You may never get the perfect result – do only a press release but ignore the counter position
- What should be the principles?
What else beside litigation should fall under legal advocacy?
How to reach people to convince them that they have rights but those rights to be real require assertion. So what innovative means and methods should be employed to reach the concerned people?
This of course also raises the question as to who are the concerned people? Is only a person living with MI a concerned person? Or should this information be disseminated to society at large as in effect everyone is a concerned person?
Destigmatization through legal advocacy
One body of opinion that litigation and advocacy should be grounded in present law? If that line taken then what do you do about the entire body of legal rulings/ principles/ precedents which have been arrived at by a prejudicial understanding of Persons living with Mental Illness.
Important to appreciate that legal advocacy in mental health is not a choice. Cannot begin from the social end of the discrimination as the challenge to social discrimination can be rendered null at any point by legal discrimination. In the wake of this reality that the above stated questions have to be addressed.
It is simply unbelievable that the first half of my programme in India has passed. Sometimes I feel if I had just arrived a week ago, other times it looks as if I had been staying in this unique country for a major part of my life. Anyway, half-term is always a good opportunity to make a preliminary evaluation of achievements, answering questions like: what went well, what did I fail, what were the greatest minutes? The below assesment is subjective, though every sentence is strictly based on evidence. Nowadays, in the era of evidence based medicine, we are told that evidence based approach is strictly objective and scientific (in the Newtonian-Cartesian sense). I do not claim such an objectivty here, as the mere selection of which evidences I am using and which I am not, makes this experiment highly subjective. (As it is also the case with evidence based medicine. Psychiatrist David Healy's courageous work helped us understand how selectively data are used in psychiatry when submitting research data for the marketing licence for new medications, and also how selectively evidence is understood when publishing about the effectiveness and safety of drugs.)
The most useful activities during the first three months:
- National Care Givers Workshop: The event was attended by about 25 family members and professional care givers. The group worked in a highly cooperative and constructive spirit. Likely this was the first time in the country for such a group to openly address such sensitive issues as force in psychiatry. Bhargavi and I worked smoothly, as if we had facilitated dozens of trainings together. The two-day event ended with a number of unanswered questions. I understood participants' needs to receive concrete help in their everyday struggle, nevertheless still hold firmly that instead of attempting one-size-fits-all recipes the only useful way is to understand how human rights considerations should be translated to everyday situations and why self-determination of people with psychosocial disabilites (mental health problems) is crucial to respect to dignity.
- PARIVAAR Training on Self-Advocacy: My participation at this event, though not part of my original programme, has been one of the memorable days in India. My role was minimal: I facilitated a short session with the brilliant self-advocates with intellectual disabilities and witnessed the election of the officers of the first national intellectual disability self-advocacy group. Since then I have had the privilege to meet some of the self-advocates in other meetings.
- Hamsayeh Peer Support Meet: I had the privilege to contribute to the preparations for the first user peer support group in the country and to participate in their first meetings. I will never forget the anxiety before and during the first 10 minutes of the meeting and the positive experiences afterwards. I hope my schedule and health will allow me to attend more meetings of this wonderful group.
- Interview for the Sanchit Oral History Archive: This marathon 3 hour video interview has been the longest one in my life. For the first time I had the opportunity to share my life as a user and then survivor of psychiatry to such an extent. And still looks like much has to be told.
- International Child Rights Consultation: This two-day event in Hyderabad enabled me to meet a number of committed experts covering various disciplines and areas of child rights. I was most impressed by the presentations of Shantha Sinha, chairpaerson of National Commission for Protection of Child Rights and Veena Shatrugna, president of the prestigeous women's organisation Anveshi. Also this was the first time that we had a joint presentation with Amita. The presentation was very well received and we both enjoyed the success. Two important outcomes of this meeting are my invitation to speak on non-coercive mental health services at Anveshi and the initiation of a CRPD implementation project by the National Commission for Protection of Child Rights.
- The use of the Kuhnian theory on paradigm shifts for mental health advocacy: I had a number of lectures on paradigms and paradigm shifts. The major goal of these lectures was to challenge the hegemony of the Newtonian paradigm in psychiatry, social sciences, law. At the NALSAR Law University the students had important questions that enabled me to address sensitive issues that could hardly be raised in more politically correct environments than the in the audience of open-minded students. At the Department of Philosophy, Central University of Hyderabad I had the opportunity to address the paradigm adopted in the theory of complex systems as well. The discussion improved my advocacy to challenge biomedical psychiatry by understanding that any consistent theory of human conduct shall reflect on both the quantum and complex systems paradigms.
- Drafting the Consultation Paper on the Amendment to the NTA on the Recognition of Full Legal Capacity with the Right to Support Networks: It is not an easy task to demonstrate why substitute decision making such as adult guardianship of people with disabilities is per se a human rights violation. With Amita we made an attempt to this task in our consultation paper which we shall revise in the light of the two consultations we have had. Also we learned important lessons from the consultations and the learnings can serve as a basis for a future research on People’s Participation in Law Making: a Case Study of CRPD. The consultations also enabled me to meet Poonam Natarajan, chair person of the National Trust, a wonderful mother and professional. Our joint presentation with Amita in the emotionally heated Bangalore consultation was like a public dance of two people who are proud to be close to one another and who enjoy the harmony of steps.
- Speaking Truth to Power: Lecture on the Institution of Human Rights Defenders: I spoke on this most important issue at the NALSAR Law University, Hyderabad and at the ILS Law College, Pune. Human Rights will be respected only if all citizens, all persons are aware of them and if more people will feel that human rights is about them, for them. Sensitising future lawyers is vital. In Hyderabad I received a large number of questions which helped us understand the way someone can become a human rights defender.
- Lecture on Non-Coercive Alternatives to Mental Health Care at Anveshi: I had a long and whole-heartedly received personal lecture at the famous women's organisation in Hyderabad. In spite of the flooding rains 25 people attanded the event which was followed by a good discussion. As the organiser put it: "Gabor's talk again confirmed about what it means to have control ofone's own body and how psychiatry wrests it away from you."
The biggest failure:
- My contribution to the Indian Psychiatric Society's Continuing Medical Education meeting: This event held in Chennai was my first encounter with a thousand psychiatrists in one room after many years. I had to discover that this sort of an encounter, especially if the audience does not know how to treat me, a survivor of psychiatry as a human being, an intelligent and sound mind, is retraumatising to me. Thus, I not only had no impact, but also entered an emotional crisis.
Places I have visited:
- Andra Pradesh
- Tamil Nadu
- West Bengal
Groups of people I have interacted with:
- Users/survivors of psychiatry
- Self-advocates with intellectual disability
- Family and professional care givers
- Parents of adults with intellectual disability
- Academics: lawyers, social scientists, philosophers
- University students
- Activists working in the fields of child rights, women's rights
- Representatives of donor agencies
- Policy makers, government representatives
My life savers in India have been:
- Amul Icecream: My old malabsorption problem became so bad that for weeks I could hardly eat anything else than Amul icecreams (especially Strwberry). Amul is one of the oldest and most successful co-operatives in India. Unlike in the Post-Soviet world, here co-operatives are effective and popular enterprises.
- Coconut Water: "The water of tender coconut, technically the liquid endosperm, is the most nutritious wholesome beverage that the nature has provided for the people of the tropics to fight the sultry heat. It has caloric value of 17.4 per 100gm."It is unctuous, sweet, increasing semen, promoting digestion and clearing the urinary path," says Ayurveda on tender coconut water (TWC)." (http://coconutboard.nic.in/tendnutr.htm)
- Unienyzme tablets: This old Indian miracle drug helped me digest my food and relieved me from the discomfort and pain I had xperienced after even the smallest amount of food intake.
- And of course my unbelievably patient and helping colleagues: Amita, Bhargavi, Elizabeth, Hari, Sandeep, and my peers from the peer support group.