After an intensive six months life and work in India I returned back to Budapest last Friday. I shall gradually update the blog with important events that took place in November in Pune, Chennai and Hyderabad. I am also planning to open a new blog with the lessons I have been learning, professional and personal.
Thanks to all people in India who provided unbilievable support, friendship, companionship, peership, colleaguiality and more.
Special thanks to Bhargavi Davar, director of Bapu Trust Center of Advocacy in Mental Health, pune, a peer, experienced manager, scholar, activist, survivor. I wish I could express my gratitude to her and apologize for all the troubles I have caused.
Thanks to all people at Bapu, including Yogita, Sandeep, Hari, Ketki, Prashan, the Mumbai team.
Thanks to Elizabeth.
I am grateful to Amita, founder trustee of Bapu, professor of Law at NALSAR, colleague and friend.
Day 2 of the National User Workshop was attended by 23 users/survivors.
The central themes of the day were: What makes self-advocacy unique among the various forms of advocacy? Why choice is crucial to self-advocacy? What skills and knowledge are useful for self-advocates?
The day started with my presentation on self-advocacy. Much of the learnings came from the experiences participants gathered on Day 1. Communication and negotiation skills were illustrated through role play exercises.
The afternoon role play session illustrated why self-advocacy is unique and why choice is crucial to self-advocacy. The scripts for the role play were:
User choice for opening an account in a bank
You are a user of mental health services. You are not fully employed and have had a difficult time in finding suitable full time employment. You live in a shared apartment with three other users. You have a disability certificate from the local authority. With this, and photographs of identity, you present yourself for the meeting to a senior bank officer with a request for the opening of a bank account.
You are a senior officer in a bank. You have the responsibility of investigating all applications for new accounts according to the new “Know your customer” bank policies. A person with mental problems has also applied for a new account and is now standing before you, waiting for your response. The person has a disability certificate which says “schizophrenia”. You have to make a response to the applicant.
Group house on rent for users
You and your friends from your user support group have decided to rent a house and live independently. You have found a place that you can rent and which you can afford together. The locality is also good and it is close to everybody’s place of work. You are not employed yet, but are hopeful. You take the responsibility of talking to the land lord about renting the flat for a year. You have a meeting with the landlord today. You have to prepare your strategies for clinching the deal and meet him.
You have a small flat in a good locality. You are looking for people to rent it out to for a year. Some young people have approached you with a reference from a nearby NGO. The NGO works with mentally ill people. You have promised to talk to them at least, saying that you will keep an open mind. You can give them only 10 minutes, though, because you have a very important meeting after that. You have to decide what to tell the young people and meet them.
Psychiatrist and medications
You have been on medication with a diagnosis of manic depression for over 2 years. You are having many uncomfortable side effects, including putting on lots of weight. The doctor listens to all that you say patiently but gives you the same hand full of drugs. You don’t know most of the drugs, excepting for one anti depressant. You are fed up of taking all these unknown drugs which is keeping you dazed. You want to talk to him about the medications today.
You are a psychiatrist and you have to see at least 25 patients in the evening today. A young person is sitting before you telling you how she is now. She is manic depressive and you have been treating her for the last 2 years. You listen patiently but you think that she is over talkative and manic. She is also not willing to accept her illness and she needs these medicines. You psychoeducate her and give her the same prescription as before.
Within the family for inviting user to marriage / festival or other celebrations
You live with your family after you received a psychiatric diagnosis. There is soon to be a marriage in the family. Your sister is getting married. Last time there was an important function they sent you to the friendly mental health center close by for a few days. You could not even call up your family during your stay there. You don’t want them to do that this time. You want to attend the wedding. After all, she is your sister and you care.
Your adult child has been living with you and your family after he received a psychiatric diagnosis. There is soon to be a marriage in the family. Your daughter is getting married. Last time there was an important function we sent him to the friendly mental health center close by for a few days. It was a sad thing to do, but we did not have a choice. We missed not even being able to contact him. This time too we will send him there. After all, she is the only daughter we have and we want nothing to go wrong.
One of the most important outcomes of the first day of the National User Workshop was that the care giver group (who attended the first day of the three day event) understood and expressed that care givers' perspectives and interests are not the same as users' interests and perspective.
This discovery came up as part of an interactive group session, in which participants were asked to consider everyday situations and decide whether that was something they would have liked for themselves or not. Then the groups were asked to deliberate on wether the situations they would prefer for themselves is typically present and accessible for users of psychiatry in India. If not, why not? Similarly: are the situations participants saw as undesirable typically part of users' life? If yes, why?
Life situations elaborated upon in the session included:
People help you in ways you don't like.
Being able to decide about your holiday programme.
People don't believe what you are telling them.
Doctor talking about your health to your relatives not even looking at you while you are there.
Your opinion about a service is regularly sought for.
Many participants, typically the care givers, felt that users should accommodate the expectations of the larger society or otherwise they will fail in becoming equal members of the community. For example, if they do not get used to wake up early in the morning, they will likely loose their jobs, in spite of the heroic efforts on behalf of their care givers to mediate between the user and the employer. This observation gave an opportunity to talk about reasonable accommodation and that the UN Convention on the Rights of Persons with Disabilities clearly identifies denial of reasonable accommodation as discrimination. Not the person but society needs to accommodate settings, environments, procedures so that people with disabilities can equally participate. Later beginning of working days, flexible working hours are examples for reasonable accommodation users may demand in the employment context.
Some participants had more than one identity: they were both carers and users themselves. It was interesting to see and reflect on how these identities interacted in the same persons' minds. A young psychiatrist came to the workshop as a care giver, then understood that his user identity was stronger and continued his participation and valuable contribution on the following two days.
The three day event was a great success. Day 1 was a joint event with care givers and users/survivors of psychiatry. 42 people attanded, participated in and contributed to the proceedings. The spirit was constructive, the sessions were interactive, besides the conventional verbal forms non-verbal of communication was also encouraged and space was given to it to enable everyone to be part of learning from each other.
Day 2 and 3 were for users and survivors only. More than 20 peers participated in being with each other, listening to each other and learning from each other. Key themes covered what self-advocacy may mean in the mental health context, why choice is crucial and what are the links between self-advocacy, peer support and empowerment.
The spirit of co-operation was exceptionally strong. Typically, in the West, this is something we first need to reach. Here the willingness to co-operate was a given from the first minute of the workshop. It was then not too surprising that most sensitive issues came soon and people could address our own stereotypes and prejudices in a self-reflective way.
The three days provided ample opportunity to learn. To learn through experience and sharing. There was fun and there was silence, there was a lot of interaction, at various levels among the participants. There were moving minutes and there was laughter.
All agreeed that these 3 days just started something that calls for follow up and continuation.
In early September I have already raised my concerns about the Global Mental Health Movement. Now there are new developments which, unfortunately, seem to confirm my worries. The movement launched its website. According to it:
The Movement for Global Mental Health aims to improve services for people with mental disorders worldwide. In so doing, two principles are fundamental: first, the action should be informed by the best available scientific evidence; and, second, it should be in accordance with principles of human rights. The Movement is a global network of individuals and institutions who support this mission.
The Movement has emerged from the recent Lancet series of articles on Global Mental Health. Its goal is to implement the final Call for Action article of the Series which demands the scaling up of treatments for mental disorders, for the human rights of those affected to be protected, and for more research in low and middle income countries. We believe that the Movement for Global Mental Health will facilitate a vigorous and sustained response to the Call for Action. Furthermore, the Lancet will designate mental health as one of its ‘campaign focal points’ in the coming years. Ultimately we aim to ensure that, through a range of activities, the Movement for Global Mental Health takes its place alongside those promoting HIV/AIDS treatment and maternal and child survival, and is identified as one of the great public health successes of our times.
The Movement has set up an advisory group. This consists of 57 experts. Let us make a little statistics. 3 of the 57 members come from the user community, which is 5.3 per cent. 27 experts represent the academia, mostly biomedical psychiatry, this constitutes 47.4 per cent. 31.6 per cent of the advisory group come from low income countries. I hold there is no need for comments to see the predominance of first world professionals in a movement that is supposed to prioritize the needs/interests of the users and of the developing world.
The material available on human rights starts with a reference to the UN Mental Illness Principles, which is an outdated document, heavily criticized by both the user community and increasingly by the UN human rights mechanisms also. There is no reference to human rights violations caused by psychiatry itself, no mention of informed consent. The UN Convention on the Rights of Persons with Disabilities is just mentioned, nothing substantive is written about its content. This is even more surprising in the light that the majority of the countries who have ratified the convention are developing countries, the supposed priority area for the Movement. Hardly any human rights information comes from the developing world.
This is sufficient to summarize: the launch of the website and the steps taken since my previous blog entry are highly discouraging.
EXPERTS TO HOLD A THREE-DAY, SELF-ADVOCACY WORKSHOP FOR USERS OF PSYCHIATRIC SERVICES
Rahul Chandawarkar
Pune: Users of psychiatric services now have the opportunity to learn self-advocacy skills, when city-based Bapu Trust, a centre for advocacy in mental health, holds a three-day workshop in selfadvocacy skills for people with psycho-social disabilities at the YMCA, Quarter Gate, from October 17 to 19. Internationally acclaimed mental health activist Gabor Gombos of Hungary will be the principal facilitator and will be assisted by Bhargavi Davar, founder-trustee, Bapu Trust. Both Gabor and Bhargavi are user-survivors of psychiatry services and will be the role models for the participants. Gabor, a former theoretical physicist, has become an advocate for the rights of people with psycho-social disabilities. He was profiled in the project, ‘Speak truth to power’ as one of the 51 leading human rights defenders, along with the Dalai Lama and Desmond Tutu. Gabor, a user of psychotropic medication for 15 years, experienced a two-month period of heavy depression following the death of his mother, a psychiatric patient, in a suspected case of drug overdose during a clinical drug trial in Budapest. He was nursed back to health by a close friend without any medication. This is when Gabor realised that alternative therapies were possible in mental health treatment. Gabor, who proceeded to conduct research in the field of clinical drug trials with the help of ‘The Washington Post’ newspaper, says, “We realised that abuse was very frequent and the user’s consent was almost never taken.” This led Gabor to join a grassroots NGO in Hungary working in the field of human rights and alternatives to conventional bio-medical psychiatry. He even chaired the European network of users and survivors of psychiatry.Today, he works as a senior advocacy officer in the Mental Disability Advocacy Centre in Budapest. According to Gabor, the stigma of mental illness is so overwhelming and the legal regimes in many countries so disqualifying that unless users become self-advocates and present their case effectively, they end up losing jobs, feel discriminated, etc. Says Gabor, “Therefore the basic objective of this workshop is to teach participants self-advocacy skills through role plays, our own life stories and instances where self-advocacy has succeeded.” According to him, Hungary and India are among the first countries to ratify the latest UN Convention on the Rights of Persons with Disabilities. “The Indian government will soon have to interact with organisations in this field. Usually, it is the doctors and family members of the users who end up interacting with the government. It is high time the users themselves were empowered to state their own case,” Gabor stresses. Bhargavi Davar, a user-survivor herself, recounts the severe depression she underwent following the loss of her child. Bhargavi, who has a doctorate in ‘philosophy of the mind’ from the IIT, Mumbai, weathered the storm by exploring alternative therapies like painting, writing, physical workouts and a shift to a high protein diet. “Despite my depression, two of my books on women’s mental health were published internationally and I set up the Bapu Trust 10 years ago,” Bhargavi says. “I am convinced that people suffering from psycho-social disabilities have this great strength and capacity to use their life’s experiences to build new lives.” Those interested in attending ‘Building leadership among users of psychiatry’ can contact Bapu Trust on info@camhindia.org or phone 2683-7644/47.
Between 1727 and 1734 Maharajah Jai Singh II of Jaipur constructed five astronomical observatories in west central India. The observatories, or "Jantar Mantars" as they are commonly known, incorporate multiple buildings of unique form, each with a specialized function for astronomical measurement. These structures with their striking combinations of geometric forms at large scale, have captivated the attention of architects, artists, and art historians world wide, yet remain largely unknown to the general public. (www.jantarmantar.org)
I, as a former amateur astronomer was very much excited to see this beatiful and smart collection of structures.
The National Alliance on Access to Justice for Persons living with a Mental Illness [NAAJMI] was created in the year 2005 to serve as a dialogue forum and to build a bank of insights on Mental health and Human Rights, across a diversity of constituencies and stake holders all over the country. The alliance is a strong collective voice around the country demanding justice and access to justice for persons living with mental illness based on the values of dignity, respect and autonomy. Fueled by the Law for All Initiative of the Ashoka [Innovators for the Public] NAAJMI has held "Bill of Rights"(BOR) consultations in each of the four regions. Through this collective brainstorming and negotiation process, a compilation was made of non-negotiable and absolute human rights that must prevail in the mental health sector.
India signed and ratified the Convention on the Rights of Persons with Disabilities [CRPD], and with the requisite number of countries ratifying it, the CRPD has come into force on 3rd May 2008. In the present CRPD environment, various laws and policies in the mental health sector have to be rights compliant. The BORs achieved success in the incredible number of questions thrown up for dialogue and the breadth of solutions sought by various stake holders, in coming up with a consensual human rights language for persons with psychosocial disabilities.
NAAJMI partners, Bapu Trust, Anjali, and Basic Needs, in collaboration with the Human Rights Law Network and Snehi organized a two day National consultation on "Citizens' charter of Human rights for persons living with a mental illness" on 10th and 11th October, 2008 at the Indian Social Institute, New Delhi. The objective of this consultation was to invite civil society, mental health, legal and human rights fraternity to engage with NAAJMI's proposal of rights for persons living with a mental illness, in the context of law, access to justice and the CRPD.
Amita Dhanda and I facilitated the program.
We again adopted the bottom up approach: we started with the NAAJMI Bill of Rights (BOR) jurisprudence of rights and looked at the various rights they have identified in the consultation process. Then we looked at CRPD and answered the question: How can CRPD strengthen advocates' hands in our work? We used the Right to Health to illustrate this approach. On the second day we focussed on legal capacity and force in psychiatry, the two most contentious issues both in CRPD and in BOR.
The presentations were followed by lively discussions.
I attended a seminar on Gandhi's moral and political philosophy, organised by the Department of Philosophy of the Central University of Hyderabad. The three day event was a good opportunity for me to learn to see Gandhi as a complex thinker whose thoughts and life serve with powerful lessons for us today.
About half of the presenters spoke about Gandhi and his philosophy as part of history. I could see how difficult it is not to deify such a great person. However understandable can the temptation to deify Gandhi, it is undesirable as deification creates a distance between us and the deity. The other half of the presentations addressed contemporary issues in the light of Gandhi's philosophy.
For me Professor Sunil Sahasrabudhy's lecture on a Gandhian approach to knowledge politics was the most inspiring part of the seminar. It gave a brief summary of the paradigm shift taking place in the field of knowledge activities. Modernity privilegized science. Science was seen as the only desired way to knowledge. All other forms of knowledge have been seen, at best, as auxiliary. Knowledge activities primarily took place in universities. The concept of knowledge was construed through the scientific method. Knowledge spread throughout the entire society was not seen as equally valuable as it lacks the rigor of science.
With the dawn of the Information Age the absolute nature of science was questionned. Knowledge has been seen as anything that can be organised using information technology. Knowledge management has become the crucial knowledge activity.
This paradigm shift creates an opportunity for grassroots, common knowledge, using an Indian concept: lokavidya, to gain unprecedented status. As far as lokavidya can be organised into formats processable for computers, grassroot knowledge can serve as a source for knowledge activities. Knowledge activities increasingly take place in the virtual space rather than being restricted among the walls of the university. While this paradigm shift is potentially empowering for the lokavidya and for grassroot people, empowerment happens only if people themselves have the control over their knowledge. That is why a new knowledge politics is needed. Professor Sahasrabudhey called for a new movement of satyagraha (Gandhi's non-violent resistance) in the field of knowledge. Knowledge Satyagraha is to cleanse the world of knowledge. It stands for a reorganisation of the social logic of knowledge on the bases of equity and human concerns. It is the chief method to oppose hierarchies, privatization and restrictive use policies in connection with knowledge and knowledge activities. It intends to rediscover the principle of legitimization in the knowledge activity of the people.
Mental health users' lived experiences and experiential knowledge, user controlled alternatives to coercive psychiatry are all parts of lokavidya, which has not gained due recognition yet. I suggest that user/survivor communities join in the Knowledge Satyagraha.
Another exciting paper was Professor Amita Dhanda's lecture on Gandhi and law. The major morale of her presentation was her request to each generation to understand what "rule of law" means and when non-compliance with a legal regime is warranted. Again I found this idea directly applicable in the mental health field: in a world of disqualifying mental health related laws, a mere adherence to the existing laws without challenging them acts against the deeper meaning of a rule of law society.
I am thankful to Amita and Professor Raghuramaraju for allowing me to participate in this exciting scholarly meeting.
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
Amita Dhanda
Gábor Gombos
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
- interdependent
- 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 India?
- 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
- Administration
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
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.
"Ashoka is the global association of the world’s leading social entrepreneurs—men and women with system changing solutions for the world’s most urgent social problems. Since 1981, we have elected over 2,000 leading social entrepreneurs as Ashoka Fellows, providing them with living stipends, professional support, and access to a global network of peers in more than 60 countries.
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.
Last Saturday we made a full day trip to Agra. On our way there we stopped at Sikandra to see Akbar's tomb. Akbar, the third Mughal Emperor (1542 - 1605) was one of the great rulers in India. His religious tolerance is comparable to another, much earlier, great emperor, Ashoka.
Last week, while in Delhi, I did some sightseeing. My guide was Amita and we both benefited from a guidebook by Y.D. Sharma (Delhi And its Neighbourhood, Archeological Survey of India, New Delhi, 2005).
We visited the Museum of Parliament. This high-tech facility currently lacks soul. The invested money and human resources call for a rethinking of how to use the museum to raise awareness and promote the Indian pluralistic democratic values.
We also went to see the famous Qutb-Minar. Here we experienced how some of the government licenced guides express anti-Islam propaganda under the disguise of guiding tourists.
Another place we visited is Humayun's tomb. In this mausoleum several of the Moghuls have been buried. The architectural complex is seen as one of the models to the Taj Mahal.
In Kotla Firoz Shah, on the top of a pyramidal structure there is one of the Ashokan pillars. This one among the numerous pillars and rocks with the famous emperor's, Ashoka's edicts was the first to decipher.
We also saw the Red Fort. This citadel was built between 1639 and 1648, after Shah Jahan transferred his capital from Agra to Delhi.
I have been working in India with Bapu Trust since June. I am sharing my thoughts, experiences and impressions in this blog.
Júniustól november végéig Indiában önkéntes munkát végzek a Pune-beli Bapu Trust alapítvánnyal közreműködve. E blogban megosztom élményeimet.
Gábor Gombos, a former theoretical physicist and survivor of psychiatry, has become a world-renowned advocate for the rights of persons with psycho-social disabilities. For over more than the past decade, he has chaired Hungary’s only network of user organisations (Hungarian Mental Health Interest Forum), chaired the European Network of (ex-)Users and Survivors of Psychiatry, and worked with numerous disability rights organisations as a consultant. Gabor was profiled in the project Speak Truth to Power as one of the 51 select leading human rights defenders around the globe. He is a Fellow of Ashoka: the Global Association of Leading Social Entrepreneurs.
Gábor is MDAC’s Senior Advocacy Officer, leading our intergovernmental and national level advocacy. In this role he has extensively advised intergovernmental bodies, such as the Council of Europe and the United Nations on disability rights issues and has participated in the work of the UN Ad Hoc Committee which drafted the new Convention on the Rights of Persons with Disabilities.
Last week, while in Delhi, I did some sightseeing. My guide was Amita and we both benefited from a guidebook by Y.D. Sharma (Delhi And its Neighbourhood, Archeological Survey of India, New Delhi, 2005).
