Users and survivors of psychiatry: Consultation

Consultation of users/survivors
A Sanchit Program of CAMH, Pune
YMCA, 26th September 2007
USER WORKSHOP I

Bapu Trust started its activities in the year 1999. It began as a research and documentation center with the objective of working on user advocacy, empowerment and rights and started the Centre for Advocacy in Mental Health (CAMH) from the year 2000. Bapu’s vision has been to work as an advocacy group, which works towards creating a more humane and user centered approach in the mental health care system. Sanchit, the oral histories Archive of the Bapu Trust was one of the first activities of the organization, which was conceptualized as a user space. This year in the month of May, during a dialogue and theme meeting with the entire staff and trustees of the organization, one of the main issues discussed was about the lack of user spaces within the organization. Not many users actually use the advocacy center or participate in its programs. It was strongly expressed that there needs to be user spaces within the organization and this should reflect in each of our advocacy programs. The very existence of Bapu Trust comes into question if such spaces are not available.

One of the important outcomes of our CAMH review process was to brainstorm about how to create user spaces within the organization. A need was felt to understand the ideology of the user / survivor and how to have a deeper user / survivor involvement in the activities of CAMH. We planned to conduct a user workshop where we wanted to understand the need for such a space and also get feedback from participants regarding our work and in which direction we want to take it. This was the first time that such a workshop was being planned in the organization. For us, it was important to know whether there is a need for user space in the city; to examine whether the user identity exists and is not an alien concept in the Indian context.

Each of us in the Sanchit team got in touch with all the users we knew in our circles, either through our work or personally, who have been politically active in this field or have some very intense experiences to share and to give constructive feedback regarding incorporating user spaces in our work. We also invited some individuals from the care giving perspective who could contribute to our user survivor work. We reflected upon the process by which users / survivors could be contacted. We also reflected upon our own identities as users / survivors.

In our work, we have seen that every user does not just have a need to access therapeutic spaces but some also have a need to access advocacy spaces. They would like to specifically talk about the injustice done to them in the mental health system. Or, they may have tried different therapists and have finally decided to focus upon their self recovery on their own terms. We discussed this with Ketki, the service program leader, about how we can involve our service clients in the user consultation. She spoke to some clients initially and once they agreed, someone from the Sanchit team spoke to them giving details about the workshop.

It was decided to call the activity, a “consultation” as users / survivors were seen as experts of their own experience. Appropriate compensation was devised to cover travel, consultation time, etc., an aspect often disregarded when users are invited to participate in such programs. We wanted to challenge the assumption that users’ time need not be monetized.

In the introduction to the consultation, Bhargavi discussed the history of the user / survivor movement which began in the West in the late ‘60s and ‘70s. The user / survivor movement started after the government’s focus shifted from custodial care to community care. Medical power grew during the second world war leading to the invention of ‘chemical restraint’. During this process, a lot of people were rendered homeless, as there weren’t mechanisms for integration back into the community. Neither the state nor the community was willing to take responsibility of those who were not institutionalized nor create necessary spaces for accommodating their needs. Many experiments, such as with drugs and ECT, also resulted in user ire and mobilization. Many were also vocal about the injustice done to them within the secret wards of the mental hospitals. This facilitated the mobilization of many groups, which was the beginning of the user / survivor movement. A lot of literature was created to talk about the nature of the mental health sector.

Mental health is seen from a very medicalized perspective. Bhargavi shared a brief history about the DSM. The Diagnostic and Statistical Manual (DSM) released first in 1952 has several versions. It talks about the various diagnosis in mental health and looks at all the symptoms from a very medical point of view. The subjective experience of an individual is not given any importance. Also, the treatments are very medical. ECT is still rampantly used across the country in spite of it being such a barbaric procedure.

In response to a question, why was it that only mental hospitals were closed down and why not other institutions, Bhargavi shared that they did close down a lot of other institutions as well. But the important point was that before the war mental illness was only a legal issue. Civic administrators were involved in running the asylums. But later it became a medico-legal issue. There was chemical restraint over physical restraint. Many people even in India feel that it was better when it was just a legal issue.

The group was informed that we would maintain complete confidentiality, as many people would not be comfortable with their identities being disclosed. But one participant felt that there is no need to keep confidentiality, as a lot of people also have similar experiences. Another participant said that maybe this is true for this group but in her experience she has had negative experiences. She said that a lot of things have been taken away from her just because she has disclosed certain things with regard to her problem. Another participant felt that it’s better to maintain confidentiality so that people can be more open if they are assured of confidentiality. The social aspects can be separated from the personal aspects.

There is a difference within the user groups especially in the Indian context. Some have a political identity and some do not. There is a lot of discrimination of patients. A diagnosis or certificate is a total write-off of the person. To make everyone an advocate for rights is also some kind of coercion. The individual has to determine to what extent they want to disclose and what her / his identity is.

The group felt that precautions need to be taken. Sometimes in our enthusiasm, we may ask the user what benefit they are getting from a particular thing / activity. But it is important to remember at all points that people come with different intentions and we must respect that. One participant said that sometimes one’s experiences can be very good learnings for others. That’s why keeping the identity secret, we can still put forth the experiences. There is confidentiality as well as public sharing.

The group reached a consensus that we should keep the experiences but not the identity, though one user felt strongly that he would still like to keep his identity.

During the workshop, the issue of confidentiality was raised several times. Some users felt that there is no need to keep the identity confidential whereas some felt a need to do that. Based on the needs of the users, the report has been prepared taking the same logic into consideration. Also there were questions about how we would be disseminating the report; whether it would be just within the group or will it be open to all. The group felt that this process needs to reach out to everyone though the confidentiality issue was tackled in the same manner as discussed above.

A participant was also of the view that a user has some thing invaluable in the perspective that comes from inexperience. He said that the world needs the knowledge of the inexperience and one needs to keep this in mind before one accepts their status quo. Even so-called inexperience has its value. This knowledge must be shared in public forums.

The objectives of the meeting were shared. We have not been able to create within Bapu the necessary user spaces. There are very few users who have a political identity. To form a group with a political / public identity was an objective of the group. The group felt that one of the objectives could be to decide what all we want to do as a group as this is the first time a user consultation is being held. Another user pointed out there are clear issues that users have faced, articulated in this group. But we should focus on the objectives of the workshop. She felt that there was a need to nurture the political identity of a user which this group could do.

While planning this workshop we had decided to invite only users but we have also invited some people from care giving perspectives. It is important to put before others the personal journeys of users / survivors. The archive, Sanchit, at our center is one such space. The anchor point of the workshop was for people who have gone through these experiences to come together as a community and put that out to the public at large.

The user / survivor identity has always been seen as a very western concept. Thus, not many such movements are there in India. But there is a strong need perceived to have spaces where people can come and share their experiences with the mental health care system. When we talk about the identity of users / survivors, we’re talking about different groups:

One is a group which is a user of mental health services of any kind
Those with profound psychological experiences and who have self reflected upon these experiences
Those who are on the chosen path of self recovery, having tried out many services
Those who have been seen as having or have actually been diagnosed with a mental illness and who have suffered social stigma and exclusion
Those who have experienced injustice in society due to a label of mental illness, degrading and inhuman treatments, and who have a political identity as users/survivors

Each participant introduced him / herself addressing the question of identity. One of the participants talked about his background, what his psychosocial experiences were and his relationships within the family. He then talked about the time when he joined an organization and experienced counseling there. He was counseled but his family was not counseled. He felt that maybe he has changed, but his family has not. He experienced that the environment plays an important part. The goal is to handle stress effectively. He has accepted his illness and has started taking medications. But he has also experienced the side effects. He said that he hasn’t read much but has learnt a lot on the streets. Even when he was in a big city, he lived on the streets while going to an organization to work.

Bhargavi said that she has been associated with Bapu Trust right from its inception. She believes that users and survivors are her community. She has lived with a survivor identity because of her personal experiences and the violence experienced by her family in psychiatry. She herself chose the self-recovery method when she went through severe depression. It has been a spiritual journey for her. There are a lot of self-recovered patients whose spiritual journey needs to be represented before the public. Users do not come and use the services of Bapu Trust and there is a sense of loneliness due to this. We have gathered today to receive learnings from the users in this consultation and to see if we are capable of establishing a community of users / survivors. Bhargavi’s own engagement with the Bapu Trust is contingent upon its fulfilling this clear expectation.

Another user said that what she has experienced would be of help to others. One can be both a user and a survivor. But we can infact talk about a survivor identity due to surviving the experiences of mental illness as well as the effects of the mental health service system.

One user with very intense experiences with the mental hospital and other mental health care systems suggested that Bapu should be seen as a needed space for users. She said that she was a very troublesome patient and had to be put up in a cell. Very often advocates say that solitary confinement is illegal. But when they are unmanageable and violent it is unfortunate. No one likes it but has to be done. Otherwise what can the carers or the caretakers do? She said that she used to beat up doctors when she got violent and has beaten up doctors even in NIMHANS. But the doctors also go wrong. The patients are not taken care of properly. There is no hygiene and they are not well taken care of. She felt that users should write to WHO and maybe they can do something. There is a lot of corruption and it is there to the roots.

One participant appreciated this user who just shared her experiences. She has known her for a long time and really admires her for being where she is today in spite of everything that she has been through. She felt that she really is a survivor.

She replied that Tilak said that “Freedom is my birthright and I shall have it”, but she is not a freedom fighter, but she is a fighter.

Another carer talked about her son and also her experiences with SAA / a self-help group for schizophrenia. Initially, she was very gloomy about her son’s illness but this group helped her change her perspective. She said that she has applied everything they taught her. She felt a lot of love towards her child when she understood the real suffering. The first thing she learnt was that the person who is affected is not at all at fault. She concluded that love is the most important thing. Now her son is an artist and is pursuing that.

She added that if we all believe in alternative therapy, with our movement, we could gather more people and make it a bigger movement. Nobody is unmanageable if there is love. If a person seeks help in the early stages and if there is a good environment then there maybe no need for ECT. Many users don’t have work. She was not sure about what kind of monetary help we can give, but we can all work towards it and wipe off corruption.

A user stated that there is so much space in the mental hospital and they can beautify the place. But there is absolute filth outside the wards. There can be so many other things done for the entertainment of the residents there.

Another user felt that the residents are already troubled and the environment there is also not conducive to recovery. The group questioned why the situation was like that. Sometimes the situation at home is also similar. He shared that he hasn’t lived in the mental hospital but his experiences of living at home and with society have also been similar.

A user said that she has been out of the mental hospital for the past 7-8 years. She said that even if she suggests the superintendent of the mental hospital to create a good environment they wouldn’t listen. They don’t even pay attention to what the patients need.

A user was of the opinion that changes in the mental hospital are needed but it also important that users must learn to forgive. He said that being bitter doesn’t get you much. Probably the staff there also has their limitations. To which another user replied that anger is understandable when the system is so poor. If the system shows some signs of changing, maybe the anger will also go away. Only when that happens, will users be in a position to forgive easily.

He said that any illness has stages and that is crucial. There is definitely a need for “user only” spaces. We should be able to create something like alcoholics anonymous. If we can provide healing services in the first few years itself that will help in the recovery process. Bapu is already in the process and can take initiative in this direction. The stories and experiences of users which we are collecting must be published highlighting the strengths and coping strategies. There should be a person on call to help users. He talked about someone who was working at a call center who gave a distress call. He was advised some recovery tools. This kind of help should be available. A help-line for peer support should be there. The literature at Bapu is useful and should be made available to general public. Users can be fully involved in advocacy work. For example, the users in the group who have a strong experience with respect to mental hospitals should be included in the state mental health authority / committee / panel. Advocacy for support groups is important. If we have a good number of groups, then we will be able to draw quite a few people who are already working. If there is recognition then naturally the stigma will reduce. Creating an environment is important. We will be able to create an environment where people will not mind taking help from support groups. He reiterated that working on existing strengths of people and coping strategies are very important. We have to see and present ourselves on the basis of our strengths and coping strategies.

He talked about the effectiveness of yoga and meditation. He continued with saying that yoga and meditation has been very useful for him. There is a diversity of practices such as thratak, yoga nidra and shavasan, along with self hypnosis techniques. But one needs to do it under expert guidance, as there are contraindications. For example if you’re already depressed then you should not be doing certain asanas of yoga. It is a rich area of research and advocacy. He has been trained at the Bihar School of Yoga and practices that form of yoga. One of the things he finds with therapy is that it focuses on personal insight. For some of us, this can almost become an obsession. One turns from a regular neurotic to an enlightened one. It is important to build a coalition amongst users. There is a lack of information regarding thriving at work or how do you deal with certain things within the family, etc. and short-term workshops on these topics could really help. It provides an opportunity to get to know each other and share within the group. Also, Bapu needs to consider how to integrate such issues into its own programs. Seher clients are not integrated into the advocacy programs. One user added that cyclic meditation has been like Serenace injection for her.

She has worked with a self-help group right from its inception and found that groups that are led by experts tend to deteriorate because of the power hierarchy. Here also, we have to consider aspects of force. She said that these issues come way into the future after starting such a group. Sometimes self-help groups become a pathway to a doctor’s clinic. She was focusing on depression as she has been through those experiences. She has also been told that she was getting addicted to depression and that is the most demeaning thing that can be told to anyone. They should also not be teaching therapies or counseling skills, etc. She is now withdrawing from both medication and the self-help group. The challenge is how to start a group without getting into these traps.

There is a need for a platform to share without the power struggle and various kinds of games and interests coming in. Also a hotline especially for suicide is needed. Suicide is just a desperate call for help. But after the attempt, everything is forgotten as one is trying to improve and move on from the incident. People who are suicidal need continuous interaction with others who are improving. Depression comes due to:

Dependency and lack of decision-making
Depression dominates emotions and only brings out negative emotions
Disorganization.

One user from his experiences of self-help groups felt that generally in such a group the facilitator should not be commanding. The facilitator should not end up by making upadesh. This does not help. Even though there is awareness that one could be wrong, sometimes there is very little one can do about it. This should be kept in mind. The needs of the users are more important.

Another user reiterated this and felt that it was very important to understand this while forming any group. Self-help groups can evolve into different things. Power hierarchies are created when actually need-based user-friendly groups are important. When its too formalized it becomes a different structure altogether. The group should be created taking into account what the needs of the users and survivors are.

All this needs to be addressed on a proper platform through different methods. There is a fine-tuning in the mind of anyone undergoing therapy. Therefore therapy should focus on not blurring the picture while not exaggerating the symptoms. She felt that exaggeration is part of the self expression and experience of the user. Depression is darkness unfathomable. Exaggeration is inevitable.

Non-religious spirituality is essential. The use of ritual must also be considered. We must examine traditional methods to see what helps and what does not. Without having harmful practices and being blindly ritualistic, we can use indigenous methods for recovery. For example, giving is a part of all traditions. Giving in material terms is also giving in mental terms. Families can also be more supportive. The everyday healing touch of the family is important. Such activities create new memories and provide space for creativity, which are important for good mental health. Music, dance, cooking, or celebrating things together can be helpful. Networking of users is important. Isolation and loneliness need to be addressed. With children grown up and work is antagonistic and family keeping away leads to loneliness and isolation and loneliness can be addressed well through these groups.

Another user added that even she feels lonely. Parents are involved in their own work and she said that the void one feels is unexplainable. A person has been aloof for so long from social interactions and there is so much void that one can’t engage with larger social groups because emotionally you have withdrawn from that totally. She felt that sometimes it is not possible to participate in family celebrations or functions.

One user who has been a founder member of a self-help group said that family occasions are opportunities. The support group can provide some time but the family, friends and neighbors are also important. There is bound to be shortage of people who are going to provide help. Family support is more enduring in nature than any group; group meetings have considerable time gap during which it is the family support that will remain with the user.

A carer also explained that the family needs to be aware about all the issues and make it a lifestyle of the family. If you don’t know anything about the illness then it becomes difficult to cope. There are very minute things, which the family needs to be aware at an everyday level. She said that she has made a new beginning for her son and she chooses the environment for him. The family should be trained and there should be healing touch within the family.

She has been living and working in the UK. Recovery is a term that has come from the US. The state policy in the UK is called a Journey to Recovery. The governments have co-opted the concept of recovery into their own agendas and from their own interests. She has recently finished an audit of 9 community mental health services in UK. One of their findings was that black people were given more depot injections than whites. Racism is a big part of how recovery is thought of in the West. Recovery means different things for everyone. There is a capacity building group [Catch a Fire], which is a national network. We started with talking about recovery. One of the group members is there who does not believe that his psychotic episodes are an illness. For him it is a religious experience. He doesn’t have anything to recover from.

We need to understand what recovery means. How do we allow these differences to be incorporated in a group situation? Another woman says that it is discovery and not recovery. She says that even though she still has her ups and downs, she doesn’t take medications. We all settle at our own comfort zones and make these choices from there. This is a journey of discovery and not recovery. There is a need for spaces to pass through these experiences. Recovery is individualized and we must not make generalizations. In a group situation, we have to respect diversity and every one’s individual experiences. Different users react differently to various diagnosis and prescriptions. For some people, even to be told that there is a “chemical imbalance” does help. This cannot be denied. But we must not hold general theories. We must depend on individual experience and be sensitive to what is helping or working for that person.

For this user, being a part of political movements has helped. This gave visibility to her problems. She could appreciate how giving visibility in public forums to the problem is important for recovery. She said that there are three things that are important:

She really sees that this group is clearly expressing a need for a users’ space in the city. Whether a formal organizational structure should be given to it or not could be considered.

A participant who has also been an active part of a self-help group for schizophrenia added that that group is purely a peer group and everybody is at the same level including the facilitator. There is no hierarchy. Another important point is that whatever is shared in the group, is always confidential.

It is necessary to have a 360-degree approach, according to one participant. It means that it is not enough to help a struggler to become a survivor. Maybe a person is hesitant to seek help. Bapu can help in filling the voids. Helping the family members to be trained. There should be attitudinal healing. It is important to identify employers who have employed users and highlight that. It is better to have dialogue where there is scope but at the same time the employer may also have reservations and apprehensions. It is important to understand that and then have a dialogue. At least it will lead to a meeting point. It is also important to create a space where experiences of people who have benefited from being a part of a group are shared. Coming out and reaching out can be termed as a day-to-day spiritual act. We can create a forum of inter-disability collaboration.

Another user said that he has never been to a psychiatrist or taken medications. Though he has been to a therapist with whom he can share and also it is someone who understands him. The process is how we cope, accept or deny. He has done self-caring and self-loving. For example when it is his birthday he buys things for himself irrespective of whether someone else gives it or not. If he feels that he has done a good job he appreciates himself. He said that at one point of time he needed someone to share. But now he doesn’t feel so. We just need to understand our own pain. If you’re getting appreciation and love from others, you can provide that for yourself as well. Here we understand each other we are in the same pain. But it also important for others to understand this pain. Everyone has different sensitivity levels and this should reach out to people. Each one’s sensitivity, creativity, and intellectual levels is different and what we are doing should reach out to everyone.

It is important for this group to be in everyday contact, perhaps on the phone. Coming out and trying to reach out to others also is an important step. The forum could also try to bring some contacts across the disability spectrum.

Another user felt that everyone needs to understand that life is beautiful and nobody can destroy it.

The use of medication was discussed in the context of self recovery. A user demanded to know whether the doctor himself has taken the medication that he prescribes to his patients? Has the doctor ever taken ECT himself or been in solitary confinement? They should volunteer to do so and then see what happens. Without that experience, they will not have any conception of what actually happens to the patient. Does the doctor know what the medication does?

The group talked briefly about the various side effects of medication and what kinds of problems the medication can lead to. The extensive abuse of Ritalin for a fictitious disease like ADHD was discussed. A user shared her experiences with weight gain, obesity, asthma and diabetes through the use of psychiatric medicines. Obesity causes self and body image related issues. The medical community does not help you to deal with these. Everyone was of the opinion that it was important to understand the medication thoroughly and then take decisions regarding whether to take medication or not. It is also important to know when one can stop medication and how to taper it off.

One user felt that each one is at a different stage and one need not share their spiritual experiences because everyone’s experiences are different and we need to keep this in mind when we form a group. There should be space for each one to grow and share at their own time.

One survivor gave her inputs on how do we distinguish between users and survivors. Users use the mental health services. But survivors are those who have used the medication and suffered its side effects, which are physical. She said that when she started taking medication nobody told her about issues related to the medications.

A user questioned the system and asked who was going to pay for all the years that have been taken away due to misdiagnosis. What about the malpractices? Can Bapu provide legal services? One of the participants who comes from a legal background said that when one gets involved in a legal battle, the cases ceases to be about the individual and only becomes another case a legal professional has to win at any cost and the point of the case gets lost. Bhargavi felt that one should at least start writing about these issues and said that she would be glad to be part of the legal process for users. Often however people do not choose this recourse to law.

Bhargavi concluded the consultation with a brief summary about what was discussed throughout the day. She said there are a few self-help groups already working actively in Pune. Then why should we have another meeting for networking users / survivors? There is also limited talk about users and survivors within the mental health system. Users survivors are never consulted for anything. Recently there was concern shared within the organization, why should we run an organization, which does not involve users/survivors in their day-to-day work. She added that she has personally felt isolated and lonely in an organization, which has only a professional identity. We have not spent time or resources in building a support community. This workshop is a result of all these conversations. There is clearly a user / survivor identity and there is a need for a safe network which is led by user / survivors.

The fact that several senior and experienced user leaders from the city made it a point to attend the consultation was encouraging. It is evident that everyone is feeling a sense of isolation and we are doubtful of some well meaning efforts taken by non-users, especially professionals. While not disconnecting from others, users survivors need to do work on their own behalf by themselves. The need to build a public foundation for a user collective based on experience was repeatedly heard. People did not only want necessary services, but at some point experienced a “help fatigue”. They have tried all the available services and have found that teaching themselves through the process of recovery is the most effective one. The concept of “enlightened neurotics” is a very useful one. There are many enlightened neurotics! It should not be a group for purely airing private suffering. These learnings need to be put out in public. We must see ourselves as a capacity group, which can train or give consultations to others.

Bhargavi clarified that Bapu will continue to facilitate the user group. But if other organizational / management structures are being proposed, we would be willing to consider that as well.

There was a clear need for user / survivor spaces in the city. This point was repeated by most people in the room. For various reasons, advocacy and self help efforts in Pune have not managed to create such spaces. The users survivors in this group have articulated many ideas on where all a self help group can go wrong. It was even a question whether we should call ourselves a self help group. This group could take this forward through follow up meetings and plan further concrete actions. We need to define for ourselves how we are different from other groups. Naming ourselves is important.

There are advantages and disadvantages of users coming together formally. The stages or the journey is from a struggler to a survivor and finally to a thriver. When survivors form a group would they like to be addressed as such or rather what would they like to be addressed as? Only when you have a formalized group is when you are recognized by government agencies. We can think about registration, etc. in the follow up work.

A user talked about better integration between Bapu’s own programs. Advocacy and services seem to carry on with their own goals and users of one do not know of the other. Bhargavi clarified that recently there has been a lot of discussion on Seher and CAMH coming together and forming linkages. Confidentiality has been one of the most important values that inform the service work and thus, and as an organization we are still grappling with this issue. One user felt that if there is voluntarism, then the confidentiality part is taken care of. And then workshops become a safe space to share experiences and plan together.

Peer support / help line is a good idea but we have to see how does it not become just another mental health service. What kind of trainings do we need? Forgiving was talked about. In fact, the mental hospital system has been very punishing. There is no forgiveness in this system. How do we forgive someone who has completely violated us and taken away our lives? We have to see whether we want to use our anger and frustration more constructively, instead of talking about forgiving.

Some ideas had come up in the process of the discussion, including writing a letter to the WHO; writing to the State mental health authority to request them to include user / survivors; and making a representation before the mental hospital so that some of the issues discussed could be taken up.

Bhargavi shared that some users who would have loved to attend but could not, had proposed other ideas, such as a book club or a coffee shop where users could meet. Within Bapu, a drop in center had also been talked about.