I don’t have a researched, analysed and concluded paper for you. What I have is a series of thoughts that I am still working with. Specifically, these thoughts are from two locations: 1) The effort to understand my own mental distress and my encounters with psychiatric services both here and in India. 2) My experience of working as a researcher in mental health over a decade. And in this role, one of my concerns has been to find the voices of women like me and foreground it in mental health research.
My encounter with psychiatry and mental health services began when I was 17 and started self-harming. Living in a boarding school in small town South India, there weren’t many people I could speak with or places to go to find out what was happening to me. Mental illness was a huge stigma. My self-harm remained a secret, I patched up the wounds and, for years to come, led a pretty convincing life of a confident young woman with good grades.
What I did do was develop a thirst for reading about madness, mental illness, distress. I was generally very interested in books and my own condition made me seek out books on psychiatry and allied sciences (I started reading Freud when I was 18 – not a brilliant idea!), literary books that dealt with madness, autobiographies of famous people who had been mad, etc. Of course what the college library had to offer was limited. Most of it was not complimentary to women. According to most of these books women were mad because they were bad, they did not conform to what the society wanted them to be, they questioned the authority of their fathers/husbands/doctors/the patriarchal society in which they lived. Psychiatry told me that women were naturally inclined to be mad – being child-like and manipulative. They told me about penis envy, and how that was the reason why women were both the cause and context of mental illness. The biggest villains, according to psychiatry, I discovered, where mothers.
Recently I made a list of all the key texts I read in those days – both scientific and literary – just to prove to myself what I had known all along. Every single one of them was written by White men. It was not until my mid-20s when I discovered feminism and the women’s movement that I realised that women have been writing about their own experiences for centuries. There was an entire school of writing called ‘personal narratives’ where women spoke about how they were incarcerated in mental asylums, what kind of treatment they received, how their madness was interpreted by whoever had control over them. Psychiatry and medicine actively discredited these narratives. They were not considered scientific and were even considered mad babblings of broken minds. The publishing industry did not want to publish them. After all, they were written by women and only men were considered rational and capable enough to produce literature. By and large, these texts lay forgotten or neglected, until the mid-20th century when there was a concerted effort by feminist scholars to revive these texts.
I became an avid reader of these personal narratives. I went through a period of extreme mental breakdown. What helped me most in those days, more than any drug or psychiatrist, was the reading, and what these strange women from far away lands had to tell me about being women and mad.
Later still, I became a researcher in mental health. Finding a voice of our own to talk about our specific experiences has always remained a priority in my work. I have used women’s narratives not only in the research work I do but also in mental health promotion work and in rights based campaigns. While these narratives have been very useful, there has been a very significant limitation – all these texts readily available to me were written by White women from western countries. The specific experiences of Black women from various contexts around the world were missing. Till date, I have only found a handful of narratives by Black women.
So what is a personal narrative? To put simply, a personal narrative is our story as told by us. Traditionally our stories have been told by other people – psychiatrists, researchers who do not understand or share our lived experiences, professionals who write up our case files, anthropologists who define our races and attribute characteristics to us. A personal narrative attempts to counter these various representations. It offers a different point of view – our point of view – about our life. It does not just talk about our mental illness, but it talks about it in the context of our life. For we are not just our illness – we are also mothers, daughters, sisters, lovers and friends, we work, bring up families, we contribute to this society in many different ways. We also have specific experiences of being Black, being women, living in contemporary Britain as Black women. The story of our mental distress cannot be told separately from these other locations and identities that we have and share with other people.
What role can personal narratives play in changing Black women’s experiences of the mental health system? I have already talked about the personal gain that other people like us can have. In my own case, reading narratives by other women – however different they were from me – contributed significantly in understanding mental distress and my own journey through recovery. Politically, personal narratives have questioned traditional explanations of science and medicine, played a significant role in working for women’s rights.
It is my contention that, if used systematically and politically, personal narratives can challenge the way in which mental health services deliver services for Black women. Let me give you some examples. Recently I was involved in a research project that audited 5 Community Mental Health Teams (CMHTs) in a London borough. This audit was undertaken as part of an effort to understand, in more depth, the experiences of Black service users of African and African-Caribbean origins who were served by the CMHTs. The aim was to use this understanding to then change service delivery wherever necessary. This was not a gender-based study. However, I have, because of my own personal interest, looked closely at the women who were part of this study. Of the 112 case files that we audited, 47% (n=53) were women.
I’m not going to present the specific findings of this study here, but will present before you some of the issues that amazed me. What struck me most was the number of years some of these women had spent in psychiatric care. 25 of the 53 women had been in psychiatric care for over 10 years (that is almost half); 12 for over 20 years; 8 for over 30 years. Two had been in mental health care for 35 years and one for 36 years. And one person had been receiving medication and other treatments for over 40 years. And that is, my friends, more than my lifetime.
Although shocking, the length of contact with mental health services is probably not a problem in itself. We all know that some of us need to access services over a long period of time. What was more surprising was the lack of evidence that there was anything beneficial in this long association. Not surprisingly, most of these women were on heavy medication – several of them on depot injections. Only five were working, including part-time and voluntary work. Only seven were in a relationship. Almost all files talked about the need for developing their socio-cultural relationships. CPA assessments were undertaken regularly as required by government policies, but these showed very little change in care plans. Mostly care plans were repeated without much revision. The emerging picture was one of women getting trapped in the system and not one of a journey of recovery, but there was nothing that I could see from the case files that would tell me why this was so.
Despite this long association with psychiatric services, these women, their lives, could not be found within the pages of the thick files. Apart from the diagnosis and medication, who were they? The case files, obviously, are written and maintained by the professionals who work with us. As required by procedures of maintaining records, some facts about the lives of these women – details of family and childhood, education and employment, police records etc – were available in the files. But what about who they really were? Their aspirations, dreams, thoughts about recovery? What did they think of the care they received? It was difficult to find voices of service users in these files. No one had asked them – no one seemed to want to know.
There was, however, the occasional glimpse of the service user’s own voice. But this was always in conflict with the official version. Let me give you an example. Mara is a 33 year old woman of African origin. She has a diagnosis of schizophrenia and has been on medication for almost 9 years. Some details of Mara’s life are recorded in the file – that her parents separated when she was young, that she was married to a man who was physically abusive to her and that her first contact with mental health services was after this divorce.
In the last few years, Mara has improved. She has a new partner, does full time voluntary work, and is going to college in the evenings. She is not aggressive and violent any more and the case notes show a model patient. Then two years ago, she decided that she wanted to have a baby with her new partner, but was concerned that her medication would affect the baby adversely. She requested a review of her medication. This was denied. Mara tried to reduce her medication herself. From then on, the case files show a different Mara. She is now referred to as ‘non-compliant,’ ‘a flight-risk’ and as posing a risk of violence to others.
Mara’s is not the only case where a conflict is recorded between the service user and the professional. In these cases, the files present a different narrative by which the Black woman is constructed as difficult, non-compliant, and incapable, even as it suppresses the voice of the woman who might speak for herself. What do you think the story would be if Mara or any of the other women told their own stories?
Clearly psychiatric sciences and its practice are not going to tell us much about Black women. Psychiatry and mental health services work on a simple formula. Symptoms => medication => symptom control. As long as the symptoms are under control, that is a success story. They seem reluctant in knowing what we can tell them about what might be useful in our own recovery. In these situations, controlling symptoms – not promoting our well-being – seems to be at the centre of service provision.
I believe it is time for us to narrate our own stories, in our own words. This has to happen as a collective effort. It is difficult to talk about personal experiences if the listener is not honest and receptive. Some of us are scared to tell our stories. There is so much stigma attached to having a psychiatric diagnosis. Some of us do not recognise that we can speak or that our words have power. Some of us may not know how to narrate our own stories. We need to support each other in telling our stories, in making sure that these stories are heard and taken seriously. Our gender, our race and ethnicity, our mental status, our position in this society as immigrants or children of immigrant parents and grandparents, as descendants of enslaved and colonised people, have all been used against us to silence the voices of Black women. It is time we broke that silence in a systematic way. This is a political project. It has to be part of a larger political agenda of our rights and advocacy. We are our own allies.
I want to end by a quotation from Audre Lorde, the famous African-American feminist, poet and lesbian activist. Lorde had cancer and underwent two mastectomies. This quotation is from her book The Cancer Journals, which is her personal narrative of her experience of cancer.
“We can learn to work and speak when we are afraid in the same way we have learned to work and speak when we are tired. For we have been socialised to respect fear more than our own needs for language and definition, and while we wait in silence for that final luxury of fearlessness, the weight of that silence will choke us.
The fact that we are here and we speak now these words is an attempt to break that silence and bridge some of those differences between us, for it is not difference which stops us, but silence. And there are so many silences to be broken.”