Consultation of users/survivors
A Sanchit Program of CAMH, Pune
USER WORKSHOP II

Report

Date: 29th November
Time: 11:00 – 3:00
Venue: S.M. Joshi Hall
Number of participants: 12

Sharing of Background:

At this workshop, we had almost a completely new group of users. It was necessary to reintroduce the objectives of our work with users, and to set the background by summarizing the happenings of the last workshop held in September.

In the introduction, it was noted that the objective of this consultation was to bring forth the experiences of persons who have accessed mental health services. There are many existing self-help groups in Pune. But this consultation, in its first round, brought forth the need for a different kind of user space.

CAMH started as an advocacy program. One of the first activities of the organization was Sanchit, an archival collection of mental health experiences. The objective was to talk about life experiences, treatment, care, and to create a knowledge pool. This was difficult to do as users and survivors do not want to become visible. One finds that there are very few user spaces in the region. We wanted to explore and understand whether this is just a western concept or is there a need for this in our context as well. The definition of user was discussed at the last workshop and what is the kind of need that exists. The report was referred to and definitions discussed afresh. It was discussed that a person using mental health services is a user but at the same time there are many who don’t access services but have had mental health experiences and have insight on those experiences. Through these consultations and this space, we would like to understand what one could do for oneself in terms of self-recovery. There are survivors in this group as well who have seen the strengths and limitations of the mental health system and thus can make an informed choice about spaces needed here in Pune.

Barriers to working together were brought up by the group. Timing was one. The group meeting for the second consultation was very new as many people from the last meeting were not there. The question before the group was that how do we want to go ahead with the plans that we had thought of the last time. How do we integrate what happens in this consultation with the discussions in the first one. A lot of ideas had come up last time and how do we crystallize that. It was felt that since it is a smaller group, we could bring in more intensity in this discussion. One user asked if a steady and stable user group can be formed at all and the group needs to be qualified in those terms. Concrete work will happen only if there is sustained interest and inputs. The group felt that this was an important issue and while working individually also, the group could work together. A user said that it was important to create a space where people can decide whether they want to be a part of it. There is no need to control. He shared that even he was deciding till the last moment if he wanted to attend today’s consultation or not. Another issue that came up was the barriers set up by psychiatric drugging to full participation in group work.

The group has discussed more about identity issues so far. This group is distinctive for CAMH and the mental health sector as people have come forward and talked about their experiences. We plan to make a report of both the workshops and publish. That in itself is an outcome. When profound experiences are collected together and put before the public, it becomes knowledge.

One user shared that she was one of the persons who started a self-help group. When that group was started, there was a doctor who initiated the group and there were articles written about it and a public meeting was also called. She felt that we should at least write articles in the newspapers about this group that we are conceptualizing now. The publications might not reach to all. Contact details can be given. People don’t know about the good work that Bapu is doing. They think its all academic, which is not true. It needs to reach to the public. There are bound to be dropouts. She shared that she had recently heard from someone about Bapu that it’s a purely advocacy group and they don’t reach out to people in distress. This public view needs to be changed. A user suggested that Mukta Peeth and Lokmat were good avenues to write about the group. Also, Sakal has a lot of interactive journalism and we could approach them.

Introduction

The introduction began with everyone expressing why they were present at the meeting. Keeping confidentiality of all present there, the needs expressed by everyone are listed below:

One user said that the world thinks of users as incapable - They cannot do anything and so do not give them any responsibilities. For example, in self-help groups, users are often told “to come and go” as per their wishes, and “we do not want to force users”. This gives the user a bad feeling of not being able to make commitments or keeping to them. Users should be given the responsibility and commitment will automatically follow. It was expressed clearly that users of this space should get here, what we don’t get anywhere else. The theme of social isolation came up once again, as in the last workshop. The expectation of social interactions, meeting people who have had similar experiences, and who are like-minded and who understand, was also put up.

Social change and / or self-growth

Based on the introductions, and also from the previous consultation, it was discussed that there were two different kinds of needs within the group. One section of the group has political needs and the other part has expressed the need to understand the human growth processes and talk about life and its struggles. To become or not to become is an evergreen existential quest for many users.

One user raised the issue that the group, which meets to talk about internal processes and a group, which meets for social action advocacy, will have different needs. His question was that how does one take both the groups objectives forward? A section of the group will see the place as one for catharsis and the other will see it as a space for expressing anger, rage, bringing about political influence, and actions related to protest and resistance.

A participant explained that the fundamental premise he has in mind is that human problems can be solved only by humans. One has to address the distress and the need of the person. Trying to elaborate on this premise, one user said that the human is at the center of all therapy. We are involved in a lot of roles and situations. One has to put a mask in many situations. We have been told what is abnormal and normal. We can’t show the abnormal – like fear, anxiety, nervousness, etc. The stress that comes out of it, what do we do about that. Only one person cannot do this. When we talk about groups and one gets a space to keep the masks aside and your emotions are naked. Group sharing is very significant. The mask leads to a lot of stress and fatigue. One has to be a teacher, wife, mother, daughter-in-law, professor, researcher, etc. Due to the fatigue, she said that she cannot work efficiently. There is a strong need for support and a space to share. There was this concept of runaway house. We could create a group and make space for sharing. Users and survivors have to find alternatives. We need to do a lot of things to deal with that fatigue like talk, exercise, drums circles, etc.

From the side of the political action group, several ideas that could be followed are: recourse to law, protests, influencing current political structures and systems; non-violent street action; study groups in Pune; or action groups which will mobilize the anger and energy constructively. All political movements do use anger constructively. But when mental health users express anger, this is seen not as political empowerment, but as illness. As different users are from different parts of Pune city, there seemed to be possibilities of having more local groups.

One user shared that there are many people in the middle range. There are people who have seen the abuses of the system but also want to talk about their experiences at a very personal level without a social change agenda. Then the question is how does one integrate very pressing social issues with the talking bit about emotions and feelings? This user stated that conceptually they are very different for him. He said that he doesn’t have experiences with the abuses of the system.

As far as CAMH is concerned, one participant stressed the need to define what an NGO is. He described an NGO as a non-profit organization of volunteers, which has two interfaces – one is the civil interface and other is the political interface. By its very nature, an organization will have a political agenda. The third interface which is for individuals of small groups, which come together for sharing of knowledge. Most NGOs operate within the system, like the development sector or health, etc. It lubricates the system. It was clarified that CAMH is indeed a professional NGO with civil, social and political interfaces. However, volunteerism as a culture doesn’t exist anymore, and so to see the NGO workers as “volunteers” may not be accurate.

We’re looking for spaces where we can mobilize energies to influence political structures and systems. But what about human distress? Will this also be shared and whether it would be in the same group? Are these 2 interests compatible? All the users who have come here so far are talking about self-recovery or group therapy. All of us do many things about working on the self. It is important to understand what do we want this group to do?

There are 2 things – content and context – of a group. The content can be anything, but what is the context of the group – is it self-recovery or life processes or social action or anything else? There is bound to be diversity but the question is what the context is. Therapy is one context and a group as a therapeutic space is a different context. There are feelings, expressions, authentic communication, absolution of guilt, etc., which would happen in a therapeutic space context.

The group eventually resolved that there is no need to clearly choose one identity or the other, for the group. A synthesis was possible for most participants. While we may practically have problems about what activities to pursue, there is in principle no disagreement that we should accept the group as it is.

Another user summarized this as two things – change in society and change in self. As a group both can be done. It’s a radical synthesis of the two. The very attempt to change society changes us. We cannot isolate ourselves from the social structure or systems. They are not mutually exclusive. There are so many issues that need to be taken outside the group. Because we can’t fight the system we need to work with it in terms of bringing the changes.

Experiences in pathway to recovery

A user, who lived his adult life as a diagnosed patient, stated that he is a survivor. He had two brothers, the younger one having died as a psychiatric patient. He stopped his medication one fine day. He has kept a meticulous record of all his prescriptions. He read about labels like schizoid, etc. He stopped taking medication on his own and asked the doctor to tell him only what the minimum dose is. He takes it when he feels he needs to. He shared that he visited West Bengal frequently. There he got support. A school of psychiatry in Kolkatta helped him. He believes that there is a correspondence between the environment the person is living in and medications. He said that now it is the anger that sustains him and protects him against psychiatric problems. His anger keeps him away from any mental or psychiatric breakdowns. Anger is one of the most motivating and powerful tools in the world. He shared that his anger is a “cold anger”, a personal way of experiencing his anger. It will not burst out indiscriminately against an audience.

Another user said that a psychiatrist has not gone through depression, and so how is he going to understand her problem? The medications don’t address life problems. Maybe they are useful for some acutely ill people. Even this she is saying because she does not really know about acute disability. In the case of depression, which she has experienced, it is just going to suppress the symptoms. When we deal with the fatigue, then we can work. ‘You don’t do this, you don’t work, you’re slow!” One is always judged in this way. There are emotional problems, stress and depression – These experiences are related, but different. In depression there is too much hurt and trauma. We need a platform where we can fight this out and for this we need people who understand, even if they are not users or survivors. Whether they talk is a different matter, but just a space to release themselves. Talking is very artificial. She has also kept a written diary. But users need to create other alternatives. Another user added that sweating it out, swimming, running, regular exercises, etc. also help. Medication depresses mobility. It interferes with day to day life. Users need such a space. One user feels very close to this group because we are thinking differently. Other groups are only updesh (sermon)giving. You need a human touch.

Another user shared his experiences with the system. He said that each doctor has given him a different diagnosis and different medication. He spent 8 days in a psychiatric ward. We don’t need to give a direction about whether one should take medication or not but we need to work on ourselves along with that through mediums which help us. There is hierarchy even in the disorders. Schizophrenia is seen as the ‘father of all’ mental diseases. What does one tell a doctor about what one is going through? All the discussions that are going on here, how do we reach it to them? He said that he has stayed in a ward and there he understood why there is a difference in the way patients or doctors look at an illness. These perceptions contribute to why conflict increases within the wards. There is bound to be diversity and our efforts should be put forth before everyone so that everyone knows about it. He said that he has tried to understand the labels and we need to be careful about these labels.

Where does empowerment start? Language could be a barrier. But we could hear and learn from each other’s experiences. A user used to go to the day care center in Mumbai. He felt that there they were told how we could tranquilize ourselves. The day is scheduled out there. He wanted to schedule his own day but he couldn’t: A space to be yourself and live your life effectively on your own terms, to express your own emotions and feelings. We need to understand what the gains and loss of living your life on your own terms is. There is no space to manifest himself. He comes to a day center with some feelings and follow the schedule also with the feelings. The functionality and normalcy that is being tried to restore is not the same as working with the self.

Political Action

It is important that we get the families to understand what we are going through. Someone from the last user workshop is not here today because she is in the institution. The family has not allowed us from the Bapu Trust to talk to her. It’s also about negotiating with the family. So as a group what are we going to do? If one were put away in the institution, then one would like their support / friendship circle to be at the time. If a new group is being formed, the family is not supportive as they feel that there are already so many well-established groups, why do we need a new one? But we need a group to provide support and intervention in case of family conflict. Family has been an obstacle for many. They have to keep running away to find their own space. Support for them from such a groups is important, because if they are in the group and suddenly one day they disappear, others will wonder what happened. As a group, we have to confront this situation. The present situation in mental health does not allow user groups to be formed and to function autonomously.

We have discussed about families getting involved. Many of us have also faced problems with doctors. Doctors need to be aware that there is a group like this, where they could be caught for the abuses they are involved in. We must start with educating ourselves first and meeting other users and also negotiating with doctors about choice and knowing more about side-effects etc.

The question arose again about whether we want the group to be a political group or not and whether we want the group to intervene on behalf of the person or not?

Many in the group were affirmative about this. There were some users in the group who have experienced forced treatment. One user shared her experience. She said that her husband got a Mediclaim policy for her and almost immediately after that she was hospitalized and forcefully treated with psychiatric medication. So he doesn’t mind spending money and doctors don’t care because they’re getting money. Everything has become like a business. She felt that this needs to be discussed otherwise abuse would go on and on.

Again there was the same dilemma about advocacy and self-recovery. One is in the social-political realm and the other is psychological realm. One user felt that they are not mutually exclusive while for another it was. An effort was made to understand the group space as self-recovery and a journey towards that and at the same time where there is political action.

Another user, based on her experiences said that it’s very difficult to negotiate and to create a pressure group. It’s a different realm – one is looking inwards and one is looking outwards. The group felt that if that was the case then we wouldn’t resolve the dilemma.

Shaping the group

One participant had continuing reservations about terms such as “user”, “mental health” etc. which this group has taken for granted. He saw life and interactions as processes where these labels have very limited place. These labels show that we are being shadowed by the medical system, as these labels have been created by the medical system. A more humanistic language about internal processes need to be developed.

The movement from the last workshop was noted. The last workshop had raised and settled the issue of user identity. In this workshop, a more nuanced discussion happened on the identity question. It was a growth in our consultative process that we have been able to discuss divergent identities and different needs within the group.

One participant constantly reminded the group that there is no “group” as such, and that we are all attending these workshops to see the necessity and the feasibility of a “group”. Even though we all as human beings like to imagine that, magically, this “group” already exists, in reality that is not so. We have to put in efforts and process to see where this consultation is going. What do we want to do in the group? Are we going to solve problems like stress and depression and schizophrenia? People are already into many things in this group- meditations, yoga, therapy, etc. We need to identify what are the things that people are not getting in their respective efforts, which they can get from yet another group. What is it that is leading them to become users again from survivors. That’s why we need to identify what we want. But the need cannot be the objective of the group. There was a need to understand what everyone’s needs are in the group and then move ahead. A functional identity for the group needs to be created, if it is thought necessary. The fact that this was another “consultation” and not the meeting of “the group” was emphasized once again.

One of the participants facilitated this session of listing the needs of everyone present and giving a shape to the processes in the group. What was the need with which we have come here? What do we get here in this space that we do not get anywhere else?

A quick review was done to understand what has happened through the morning session. One user expressed that it’s too complicated for him. The self-help meetings that he has participated in are very simple. Language is difficult to relate to and understand. Another user expressed that we need to discuss not only why we should be here but also what we should do, something that’s going to make a difference not only in a group but also outside the group. We can put in a lot of things in, but we need to decide that one thing that will lead to a change.

It was clarified that there was no need to censor oneself. It was seen as necessary to openly say what one needs from this space.

Journey from user to seeker

One of the users formulated an understanding of where the group is trying to reach.

A seeker is one who is looking for life answers. The reference is not only in mental health but is about life itself. “Users / survivors” move to being seekers or journeying people. Spaces and services have to match this journey. A participant also felt that we require a new terminology for Emotional Quotient (EQ) and Intelligence Quotient (IQ). The group felt that eastern words were more full and complete. Eg: swastha, poorly translated as ‘health’– which means located in self [‘swa-astha’] or swa-tantra, which means self-technique or self-determination.

Listing of objectives and activities if a group is established

Purpose of the group: The group should work towards a state where a survivor should not become a user again. Coping strategies need to be institutionalized.

Objectives of the group, if formed:

• The group would have both options, political / social action and also a self-recovery option.
• The group would have an empowerment objective and will respect diversity.
• The group would work towards formulating a language which is not a mental health / medical language. We have to re-look at the terms, “user”, “survivor”, etc. and come up with our own language.
• Consolidating the group: shaping it up

Management

There were concerns expressed by Bapu that our advocacy agendas should not be forced on the group. Any Bapu had other spaces to carry on with its general advocacy work. The group should not be used as a space for raising the flag. After discussion, it was felt that if advocacy inputs into the group are personal, and not organizational, then its ok to put them down as activities. Other people in the group also came with these needs.

Bapu is a facilitator and do not want to manage the space. Self-advocacy is the best form of advocacy. But some of the group members felt a little cynical about it going on without leadership. They felt that the group is going to need a management organization. One user said that he would like to think that that is being realistic. It won’t go forward unless there is Bapu taking responsibility for it. Bapu has the enthusiasm and time to give to structure the group. The group needs an anchor. Bapu can provide that anchor.

Future course of action

• Disseminate report of this workshop
• Meet again for structuring these ideas and proposals further.
• Start a yahoo group – Saadhak / Seeker

Related Links
	Users and survivors of psychiatry: Consultation – 1
	Users and survivors of psychiatry: Consultation – 2
	Users and survivors of psychiatry: Consultation – 3