Survivor Research was a virtual collective of independent researchers and trainers, community developers and activists interested in foregrounding the voices of mental health service users/survivors, especially from marginalised and minority ethnic communities.
Who We Are
Jayasree has encountered mental health services in India and in the UK. Most of her adult life was spent negotiating six different psychiatric diagnoses, western medicine, faith and religious healing. The net result of this was that she developed a political identity as a survivor, with strong views on healing...Read More
There is a major side effect to a psychiatric diagnosis – the loss of voice and agency. Most of us who have received a label of ‘mental illness’ have the experience of being silenced and marginalised. Over many decades, service users have argued that we are “experts by experience” and that our views need to be central in mental health service planning, development, research and training. Service user involvement has now become a part of government policies in the UK.
But what does this involvement mean? Many service users are cynical about the value of policy-driven involvement. Why would we expect services to take our views seriously when even our experiences of what a certain medication does to our bodies and minds are ignored?
In research, there is still a hierarchy in what is considered evidence, with randomised controlled trials and other positivist ways of doing research occupying top positions. Research, undertaken by service users/survivors, reflexive of the experience of distress and of using services, is generally regarded as having less value or biased. Many service users feel that “involvement” is still just a nice catch phrase and not a meaningful reality.
For people from racialised and minoritised backgrounds, the experience of “being involved” has historically been a difficult one of multiple marginalisation. Within the field of user-led research (and not just within research, but within the broader user involvement activities as well), the voices of service users/survivors from Black and Minority Ethnic backgrounds continue to be few and far between. Where we are involved, we are often fighting against discrimination based on our mental health status as well as against whiteness and institutional racism.
The primary task for Survivor Research was to make a small intervention in this area by working in ways that are reflexive of our lives, our knowledge and our agendas.