Three of Six Months Passed: a Mid-Term Evaluation

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:

• Hyderabad
• Pune
• Bangalore
• Chennai
• Mahabalipuram
• Guwahati
• Darjeeling

States I have visited:

• Andra Pradesh
• Maharashtra
• Karnataka
• Tamil Nadu
• Assam
• 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
• Psychiatrists

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.