Volunteer Reflections on Testimony Indexing Project

The comments below are made by five of us who worked on the Testimony Indexing Project. The Indexing project was set up to analyse the transcripts of the Testimony Archive and work out a number keythemes to give users of the archive an overview of it's content and access to some initial browsing.

Colin. I suppose for me it has been a personal experience - contrasting my vivid memories of Napsbury with two of the Testimony subjects who were there at earlier, and perhaps worse, times. I found this most interesting as I was able to compare and contrast my own experiences with those of others and I learnt a lot in the process, as well as more about Napsbury. For example, I learnt that the man who designed Kew Gardens was also responsible for Napsbury's grounds! I identified with some of what was said, although I had good and bad memories of the place, and ultimately I accept they did get me back on my feet again. It was interesting to compare what interviewees experienced with what I’d experienced of treatment and procedures. Things appeared to have progressed a little, with ECT being rarely used, but there was still the very basic drug-based therapy, with a ward-round once a week and then being left to one's own devices the rest of the time, with no talking-based therapies at all.

Aimee. The Testimony project interviewed fifty people to give them a chance to explain what it was like for them living in an asylum. A strong theme that became clear from the patients’ narrative, was the fine line between perceived ‘sanity’ and suddenly finding themselves clinically unwell. Although the testimonies are told in retrospect, when the interviewee has recovered, the strong memories indicated to me, how fully aware many patients are of themselves when they are receiving treatment. There was strong evidence to suggest that patients felt they were not really understood by their practitioners. Given that many of these testimonies are being told from experiences from twenty or thirty years ago, it is not surprising that attitudes towards the treatment have changed to meet patient’s needs. I have enjoyed doing this work and feel it has been a valuable and privileged experience. It was difficult however, to pick out the words that were of true significance to the interviewee and to understand the full meaning of events for a patient. These transcripts are given to us third hand and that is why certain meaning can be lost. I am aware that these testimonies should be greatly respected and taken at face value, because they reflect more than just the experiences of the patient at that time, but also offer insight as to how the interviewee has progressed and made sense of their experiences.

Laura. These narratives are not just of isolated experiences of ‘the mental health system’ but are whole life stories. I found I was reading about whole lives punctuated, in some cases blighted, by different medical treatments and characterised by numerous admissions to different types of institution. I noticed that there was commonly institutionalisation in places whose function seems ill-defined by today’s standards. I was struck by a lack of consistency or security in the diagnosis’ or treatments given to some of the interviewees, with no firm medical solutions or answers ever given to problems posed by their behaviour. I was very interested in how most of the interviewees main source of emotional contentedness, seemed to stem from striking a balance in their own conceptions of what their problem was, and learning to accept and live with themselves. There were concrete and recurrent attempts by certain interviewees, not only to make sense and order their life experiences, but to learn from the past in order to grow and develop. I was surprised by the amount of self reflection and self-awareness certain interviewees had about the possible causes of their distress and I was emotionally affected by the way some interviewees were acutely aware of the passage of time and the shape of their lives. I was strongly affected by an interviewees’ description of his sense of achievement in his own survival. Doing this work has helped me to further understand how mental illness can not be thought of as existing separately from social and political contexts it exists in and the complexity of conceptualising ‘sanity’.

Sarah. It has been a hugely emotional experience working on the project; essentially I was offered an intimate insight into the experiences of individuals whose lives have (often) been characterised by tragedy, struggle, self-doubt, and a life-long process of attempting to understand and to be understood. It is all the more overwhelming and affecting because one reads about an entire life in such a compact way. I really hope that these interviews will provoke others to consider the same issues… they are a completely invaluable resource. It is certainly disturbing to discover how many of these individuals suffered turbulent early lives, bereavement, tragic loss and lack of stability, and yet cannot recall being encouraged to consider these as reasons for their emotional and mental distress. Would they have recovered more quickly and fully had they been offered the opportunity to talk about their personal experiences as part of a course of treatment? When you discover someone has spent the better part of 40 years in an institution and left with no sense of the reason for their mental distress, and knowing this is something which could be discussed, it is difficult not to form the opinion that the system has potentially done more damage to their life than the circumstances which led them there initially. I had previously been unaware of the complex communities which develop within institutions, the social interactions of the patients and staff. I was surprised over and over again by the transcripts: by disturbing stories of brutality, mistreatment and self-harm; by the admirable determination of some individuals to make campaigning/working for others with similar experiences their life’s work; by patients appreciative of treatments such as ECT; by the often tragic emotional experiences suffered before entering the mental health system. These transcripts offer a fascinating documentation of the social and political history of a particular section of society and its relation to the wider whole. These people have been grouped together because of our society’s decisions about how to judge their behaviour and the parameters of the group into which we place them. Of course taking part in the project has provoked a lot of consideration of the definition of the ‘other’ in society, the ways in which we conceive of mental health difficulties, and the implications of the kinds of decisions we make.

Natalie. It seemed to me from reading those testimonies, that so many people’s daily lives, and their response to adverse circumstances seem to have been pathologised in the past. I was surprised to read in such detail, and so many times over, about the lives of people who experienced mental distress. It was obvious reading through so many case studies, that there was a pattern in peoples’ experiences: of instability of family life, of employment, of relationships, of disharmony in external circumstances. How did we ever come to believe that mental distress was an illness, a disease of the brain, separate from external life? There are clear cases that we would now recognise whereby the triggers of distress was post natal depression, or post traumatic shock disorder, that in those days were pathologised, the experients incarcerated, and institutionalised. The stories I read seemed to suggest treatment was either brutal with medication, or benign, like making stuffed toys and doing craftwork. The asylums seemed to create a sense of dependency for the incumbent, though some certainly felt grateful for their treatment there. I wonder to what extent things are different today? The testimonies showed examples where the interviewee said no, or had a different point of view from their hosts, and this itself was considered an indicator of mental illness. I was shocked that it seemed to take us so long to see the dynamic and the patterns of behaviour of patients, doctors and nurses. This material should be introduced as part of the curriculum for trainee psychiatrists, GPs, nurses, and social workers. April 2007