Are mental health survivor movements about reform or revolution? Both or neither? Mark Brown looks at their history and considers their future.
On paper peer support seems like an obvious idea: people with experience of mental health difficulties helping other people with mental health difficulties. Peers support in mental health is often spoken about by advocates of change in mental health treatment and support as the answer to the challenges faced by mental health services.
"The voice of people with mental health difficulties is not one voice... Change can be made both within and outside the system."
We all begin our experience of mental distress or mental health difficulty alone and frightened. A space filled with others who have experienced mental health difficulties is, to someone who has experienced similar, like returning to a country you grew up in but haven't been able to visit for years. Things that might need to be explained are suddenly taken as read, the landscape is shared. When conditions are right, being with others who know what mental health difficulty is like is a feeling of having come home. Extending a hand of warmth, solidarity and experience to those currently lost, alone or hurting feels like a natural step when we recognise that experience as similar to our own. So why does the idea of peer support attract such dreams of emancipation at the same times as often getting bogged down in debates about definition and practice?
Emerging from the shadows
Medical and legal ideas of how people who experience mental health difficulties should be treated have always been shouted over the voices of those who have lived those experiences. Early examples of peer support happened in the literal shadows of the asylums. There is always a third seat in any meeting between two people with mental health difficulties: there is what I think about you, what you think about me and then, like an unwelcome chaperone at a teenage dance, what society thinks of both of us. In any discussion of peer support the ghost of 'the mental health system' sits like a judge to pass verdict on what is possible, safe and desirable.
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It has been hard for peer services and those giving peer support to conceive of themselves as even achieving the level of regard, respect and status that is held by mental health services. While some peers have tried to build spaces outside of the mental health system, and others have tried to build peer spaces within, the question of power has remained a constant preoccupation and with that the question of who should pay for peer services and peer workers.
The conditions under which peer support and peer services have developed have tended to be defined by the political and economic realities of their times and the way that has affected the way that mental health services have operated. In the UK, many of the roots of peer support crisscross the history of other political movements and trends, some left wing and some not. The Mental Patients' Union was formed in 1973 to, in the words of founder member Andrew Roberts, "represent all mental patients wherever they needed to be represented – we wanted patients to be able to support one another and bargain collectively.” Influenced by other liberation struggles, one of the Union's first acts was to demand the end of compulsory treatment. Later movements in peer support have ranged from the setting up of user-led organisations to provide services; to the recruitment by NHS of services of peer workers to work within their structures; to the development of networks of mutual self help and support such as The Hearing Voices Network.
Within or without?
The idea of peer support encompasses at least two different projects: the desire to create an experience of living with mental health difficulties independent of institutional definition and the desire to alter what institutions do to or for people experiencing distress and mental ill-health. The former has tended to focus upon making autonomous spaces outside of ‘the system’, the latter on finding ways to replace parts of ‘the system’ with practices or people drawn from lived experience. It’s tempting to label these two projects as revolutionary versus reformist but in practice they play out in more complex ways. Some of those currently located within medical or academic institutions, such as some Mad Studies advocates or the A Disorder for Everyone group speak most loudly about overturning the system while others on its periphery or existing completely outside it seek access to reform it. Some peer projects, like Black Thrive, bridge both using funds drawn from a far wider net of funders than the NHS.
Experience of mental distress and mental health difficulty is not one kind of experience any more than ‘the mental health system’ is one uniform structure. People’s experiences of mental health difficulty have changed more quickly than mental health services have. The general public and charitable funders have been quicker to recognise that the voice of people with mental health difficulties is not one voice, but millions. New opportunities and new needs are easier to spot now that people with mental health difficulties can find each other via the internet. To talk of harnessing the power of peer services is to misunderstand their purpose. Change can be made both within and outside the system but change only happens when things happen for people, with people, by people.
Marginalised and discriminated against groups have always found ways to support the emotional wellbeing of each other while also changing the material conditions under which they live. Solidarity and bearing witness to each others pain and grief and sadness is vital to making and building spaces, relationships and services that overturn limiting or oppressive institutional logics. Peer support is not support at all if we do not make our peers our focus.
Patrisse Cullors, one of the founders of Black Lives Matter, early on described the movement’s mission as to "Provide hope and inspiration for collective action to build collective power to achieve collective transformation, rooted in grief and rage but pointed towards vision and dreams." People who experience mental health difficulties helping others who are living through similar experiences requires choosing the right means to reach the right ends. Some will require working closely with existing services and improving them. Others will require rejecting them completely and embarking upon developments not previously imagined. Some acts of togetherness will require neither.
In October The National Survivor User Movement at its AGM brought together a range of people with lived experience of mental health difficulties to discuss the future of peer support. The energy and thirst for peer services is there amongst people who live with mental health difficulties. Eight years of austerity have created a bitter and lonely landscape for many. If funding for mental health and social care continues on its current trajectory, it is unlikely that structural inequalities in mental health will be removed within this generation. Now, more than ever, what we can do for each other counts. While we know what we do not want, defining what we do does not always come naturally to us.
For many of us, the experience of mental health difficulties is considered by others to be the signal for us to stop dreaming and hoping. We now have more ways of speaking directly to each other than ever before. To be powerful enough to be able to stop what injures and belittles us we must also find ways to put our yeses into action and make structures, opportunities and relationships that help us to grow. There is room for a tapestry of people with lived experience helping each other. Our job is to ask: how do we want to use our power and ingenuity and experience to help our peers and what do we want our peers and allies to do to help us?
What, we must ask, can we build together?