There are a variety of terms used to describe people who experience distress and use, or refuse, mental health services. The obvious one is ‘patient’ but many avoid this because it carries a sense of passivity or they think ‘mental illness’ is not the same kind of experience as ‘physical illness’ (see Mental and physical health). So here are some terms in use: user, consumer, survivor, person with lived experience, person with psychosocial disabilities, c/s/x (consumer/ex-user/survivor), inmate, mad, loony, barking.
Some of these terms tend to be specific to different countries – consumer was used in Australia for a long time, user in the UK, c/s/x in the USA and person with psychosocial disabilities is increasingly used in the Global South. The variety also indicates there is no consensus but it is lack of consensus at quite a deep level. Because each of these terms has connotations – they are not just descriptions.
So, consumer implies someone free to choose in a marketplace and to change ‘suppliers’ if you are not happy with the one you have got. This has been criticised because people who use mental health services are not in this position. You can be detained and treated against your will. And in many jurisdictions, public health services operate so that you get the psychiatrists who is responsible for the area where you live. One person said in the 1970s “Psychiatric patients are consumers of psychiatry like rats are consumers of Rentokil”. Rentokil is a rat poison in the UK!
Survivors, on the other hand can mean two things. One is that you have survived your distress. But the other is that you have survived the mental health system which is thereby seen as something toxic. This is a much stronger and negative term than consumer.
c/s/x could be seen as ‘inclusive’. But it is rather odd because it puts together two apparently contradictory terms, at the level of what they imply – consumers and survivors. Being inclusive could be positive but it elides the differences between groups which some people take to be crucial. Being inclusive is sometimes deliberate in a strategic sense and it has been called this: “strategic essentialism”. That is, people come together with a goal in mind in the form of an alliance.
These different terms also have implications for people’s readiness to work with the mainstream. Calling yourself a ‘consumer’ indicates and easy relation with mainstream trends. ‘Survivor’ indicates the opposite. Today’s favourite term in the West is ‘person with lived experience’. This fits with what I said in the ‘Theory’ section – people’s contribution to involvement activities is their ‘lived experience’. But there is a lot of uncertainty about how to actually do this. Many people want a seat at the table but partly because they are critical of mainstream work. But much writing on ‘lived experience’ never mentions this and the word ‘power’ is completely absent. My feeling is that the idea of ‘lived experience’ sanitises what madness is and its relation to the mainstream. Anyway, what would someone without ‘lived experience’ be: dead or in a coma? It’s also been said that this idea has been reduced to health and health only and this does not capture the ‘lived experience’ of Black people for whom exclusion from school, stop and search and a hostile environment are crucial but not matters of health.
Mad, loony and barking are attempts to ‘reclaim’ negative words and make them positive. There is an organisation worldwide called Mad Pride. I have used the term ‘mad’ and do so in public. But ‘loony’ and ‘barking’ are reserved for when we are on our own.
So, a name is more than a name. It takes its meanings from the general discourse in which it sits. At least it does up to a point because there is also the regional factor to consider. And of course, that is not neutral, they have their own histories and politics. This may all seem a bit obscure, but it is important to see that the differences are not just random.
In the sphere of research, some people who have experienced distress and responses to it have titles that incorporate activist names: consumer academic; user researcher; survivor researcher; peer researcher. These title tie people to certain forms of organisation and their politics. But also there can be a discrepancy between people’s titles and how they describe themselves elsewhere, in biographies for instance. Titles can be quite bland, even ‘acceptable’, but the biographies may be full of words like ‘advocate’ and ‘activism’. The field is not stable. But maybe at this point it can’t be.