12/02/2008
Back in Budapest, Hungary
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.
10/26/2008
Choice and Self-Advocacy: Day 2 of the User Workshop
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 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.
Psychiatrist and medications
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.
Carer's perspective and interest is not the same as users'.
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.
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.
10/17/2008
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
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
10/15/2008
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.