Choice and Self-Advocacy: Day 2 of the User Workshop

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.

Carer's perspective and interest is not the same as users'.

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.

National User Workshop: Pune, 17-19 October

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.

Buliding Leadership Among Users of Psychiatry: Training on Self Advocacy

From today till Sunday Bapu Trust runs a three day training on self advocacy in mental health. The programme is as follows:

17th, Friday, Open House

9.30-10 AM Registration

10-10.30 AM Introductions, Norm setting –Bhargavi

Objectives- Gabor

10.45 AM – 1 PM New Life Styles : A workshop* Gabor

* Separate groups for care givers and user / survivors

Lunch Break

2.30 PM – 3.00 PM – Healing Drums Circle -- Bhargavi

3.00- 3.15- Film

3.30 PM – 4.45 PM –Re-scripting Life-I – A workshop

Gabor

Concluding session – Gabor and Bhargavi

DINNER at a local restaurant

18th October, Saturday

9.30-11.00 AM – Self as Myth- A personal Journey - Bhargavi

11.15- 1 PM – Lecture by Gabor Gombos on Self Advocacy

Lunch Break

3.00 PM – 5 PM – Rescripting Choice – II A workshop

Gabor

6.30 PM – A Film

19th October, Sunday

9.30-10.30 AM - Reflections Gabor and Bhargavi

10.45- 1.30 PM – Empowerment – Gabor and Bhargavi

Lunch Break

3 PM – 3.30- Bamboo Dance

4 PM – 5 PM – Resolves and resolutions

5 PM – 5.30 PM – Concluding session

Once more on Global Mental Health Movement

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.

Building Leadership Among Users of Psychiatry: Workshop in Pune

Life beyond medicine

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.

Visit to Jantar Mantar in Delhi

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.

National consultation on citizens' charter of human rights in mental health: 10-11 October, New Delhi

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.

Seminar on Gandhi: 2-4 October, Hyderabad Central University

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.