Thinking and knowledge
There has long been a belief amongst mainstream thinkers and researchers that the mad are “irrational” – confused, lacking insight, cognitively deficient, emotional and incoherent. As such they are the direct opposite of what is usually thought of as ‘scientific’. And that in itself is a reason for excluding us from science and research. We are not thought to be credible at the level of knowledge itself. This has been called ‘Epistemic injustice’ by Miranda Fricker.
But what exactly counts as science anyway? There are those that believe that if you collect information according to certain rules (methods) then that information will speak for itself. The researcher is a blank slate and has no bearing on conclusions drawn because those conclusions are guaranteed by the method of research. Also, this way of thinking is very general. It entails a belief that if something – say a treatment – works in one situation, it will work everywhere with a few modifications sometimes. It is supposed to be unbiased and value-free.
Many people – especially from marginalised groups – have said that this is impossible. There will always be assumptions, or underlying concepts, that direct how work is carried out. Feminists showed that history was indeed HIS STORY – there was no herstory because historians concentrated on the lives of important men. Values were intrinsic to the discipline. There are many other examples.
What has this to do with madness?
I have already said that we are more or less disqualified from the realm of thought by virtue of features of madness. But there is more to it than this. To go back to what I said about involvement in research we can ask the question: why was PPI so difficult, why does it seem to have failed. My answer is that so much was fixed in advance that the public and service users could do little to change things. The method was fixed, the social hierarchies were fixed, what counts as success in academia was fixed so really we could only tinker at the edges.
General theories
Until recently, the social sciences and humanities aimed for general, universally applicable ideas or epistemologies (systems for producing truths). Everyone has heard of Marxism and Psychoanalysis – the first describing political economies in general and the second people in general. It was partly because marginalised groups pointed out that they were absent from or misrepresented in such big theories that attention began to turn to the local and specific although this was not the only reason. But you could still do local studies, find out quite a lot yet retain the idea that the information speaks for itself. This is a bit more difficult with what is called qualitative research because when you are dealing with what people say or write or draw there is obviously some interpretation at play. Understanding how the researcher affects the work and being transparent about this has become important – ‘reflexivity’. So a shift begins just with the shift in method but it is not cut and dried. I have written about how this affected my own work and it links to activism too:
A framework
We could proceed with many detailed studies of specific situations, and I think we should. But if we are going to have Mad Epistemologies we need some higher-level concepts to tie different pieces of work together and identify differences as well as commonalities. But we must never lose sight of the massive hurdle that is epistemic injustice: the idea that mad people simply cannot think rationally. This website hopefully shows that there is some speaking back but the mainstream has a powerful set of tools at its disposal, from domination to co-option of our work. It is the language in which we discuss mental health. We need to carve out our own. This is difficult.
But if we start from the assumption that the words and actions of the mad are meaningless, this assumption does not hold everywhere and has been broken. From the second world war to social psychiatry to formulation, writers have found meaning in the words of the mad. But this meaning has been found for us, not by us and that is one thing that should change.
Psychiatry, psyschology and all the little ‘psys’ focus entirely on the individual, stripped of any social context. They behave as if what happens in the doctor’s office is the most important thing in their patient’s lives. They have no interest in poverty, racism, the threat of children being taken away and other forms of structural violence. We need to bring people’s lives back into the picture and not treat them as just a conglomeration of symptoms. In fact, I would go so far as to say we should take mental health out of the clutches of ‘health’ because it often causes more harm than good (see section on physical and mental health).
There is a concept that has been part of survivor thinking for years. It is ‘experience’. Well, we all know what ‘experience’ means, don’t we? But there is a problem there because writings on this subject tend to swivel between that everyday knowledge and using ‘experience’ as an organising category for theory. To my mind, if it is to be an organising category then it has to be understood as something that is socially shaped, collective and constantly reflected upon. We don’t first have individual, everyday experience and then collective experience, they are inextricably linked. And looked at this way, ‘experience’ is not static, it changes according to settings and social conditions (see the reference on ‘epiphanies’).
This idea of experience is of a different order to the way mainstream science works. The question then arises of how to bring ‘experience’ into the research space. Projects often have LEAPs or LEAFs (Lived Experience Advisory Panels; Lived Experience Advisory Forums). But they meet infrequently and the agenda is set by the main project. So I conclude that if ‘experience’ is to have a rightful place in survivor research and thinking then mainstream science is the bit that needs to change.
There is a body of work that seeks to do this. It originated from Canada but has recently taken hold in England and Germany too. Its aim is to focus on the positive aspects of survivor work and life and go beyond critique. Much good work has been done, but I am not convinced that it has left critique behind. Of course, the same could be said about me but the critiques are a bit different. I do not know about the Mad Studies community but I would hope there is room for debate with the ideas above.
The other narrative that is prominent today is that of ‘rights’. I am not going to dwell on that here but in the section on Mental and Physical Health I will broach the Social Model of Disability which I think also has a place in the development of the Epistemologies I am discussing.
I have written this section in the hope that some use can be made of these ideas in the formulation of epistemological positions that would be helpful for survivors. It should of course not be taken as a stand-alone but combined with the rest of the website. ‘Epistemology’, even in the plural, cannot be ungrounded.