I have mentioned several times that I don’t do research for research’s sake but to try to make a difference. This can be through policy, for example the work with NICE referred to in the section on the Sharp End of Psychiatry at a national level or changing services locally. But I’d like to highlight that formal policy work is not the only way to change things. Another way is to ‘get political’ and engage in activism. By that I mean joining groups and lobbying, protesting and offering alternatives. Of course, science prides itself on being ‘neutral’ so really this should not be allowed! I take on the idea of science as neutral in the Epistemology section. But although activism stands on its own, in this section I explore the links between activism and research.
First ever project
The first user research project I was ever involved in was a perfect combination of research and activism. I was a member of a ‘user group’ in North London at the time of asylum closures. It was 1988. We decided to interview people who had spent time in the local mental institution (sometimes their whole adult lives) about what it was like compared to their life now ‘in the community’. Mainstream research at the time was preoccupied with how many people committed crimes, including murder, how many were homeless, how many in jail and so on. They counted people falling into these categories. The very fact that these were the things they decided to count speaks volumes – they were expecting trouble. Or, to be fair, they wanted to show that the policy of asylum closure was a success because few people appeared in these categories. But we did not count people, we talked to them. Their feelings were mixed in that there were things they missed about the old institutions and the ‘community’ could be a lonely place. But they liked the freedom to choose what to do each day and who to associate with.And they mostly liked being away from the staff. We wrote a report called Treated Well? We were told our report was discussed at a high-level seminar in London. The people there were baffled: “They talked to mental patients?” You see, they thought the ex-patients would have nothing sensible to say. They also thought this was ‘not research’ because it was what would later be called ‘qualitative’. But it was research and it was a form of activism because it directly fed into mainstream policy and we were running campaigns about the closures at the same time. It wasn’t easy. One top manager said to someone: “why should I listen to a manic depressive like you?”. Nobody would say that today. They might think it.
Many years later
Between 1996 and 2001 I worked in the research department of a big national charity – the Sainsbury Centre for Mental Health. Just before I left, I designed a project to look at the state of the ‘user movement’ in England at the start of the 21st Century. Jan Wallcraft, who sadly died last year, took it over. But I did do one part of it. This was to interview 8 user ‘representatives’ involved in drawing up a big national policy on mental health: The National Service Framework for Mental Health. As with nearly all such endeavours organisations were invited to contribute and every ‘stakeholder’ had to be represented – doctors, nurses, lawyers, administrators and bodies representing them. Cleaners were absent even though survivors may say you can have ‘real conversations’ with cleaners. And 8 service users were invited. There was no rationale for these 8, they did not represent organisations, they were apparently randomly selected individuals and they complained about this. They were separated and allocated to different ‘work groups’ and no attempt was made to align this with interests and expertise. These persons were not encouraged to form a group themselves, structurally this was discouraged. This shows how the mainstream blocks collective work. Five of the ‘representatives’ did not last the course, and all said they would never do it again. Two were Black people and the experience seemed like torture. They faced racism from some of the white service users and were ignored by the Black professionals. One broke down in tears speaking to me and disclosed having therapy afterwards to deal with the trauma. These were people with decades of experience and developed arguments. But the environment was so alien and fragmented that they were unable to contribute as they should have and could have done. They were silenced: experts silenced. And I am quite sure this will come as a complete surprise to any of the professionals at those meetings should they read this. They did not understand the position they were putting the survivors in. And they are mental health experts. It seems this particular attempt to ‘involve’ survivors was an object lesson in how not to do it.
User groups and decision-makers
This was a three-year project that included following 6 user organisations in their interactions with local mental health decision makers. It was an ethnography: we attended meetings of the groups and sat in on their discussions with decision-makers; we collected a lot of documents including reams of email traffic. We wanted to know if these groups got what they wanted in terms of changing services and if they did not, why not. Firstly, not all the officials were exactly co-operative – meetings would be cancelled or cut short. But others did genuinely appear to want to take ideas on board. However, the bureaucracy was unbelievable. One thing that was evident from the beginning was that you had to ‘behave properly’. If someone got angry this was quite likely to be seen as a ‘symptom’ of their illness, even a sign of ‘relapse’. It seems mental patients cannot be justifiably angry. One group lost a major source of its funding during the three years, and this is not uncommon – such small organisations have to fight to survive. Perhaps the group that had the worst time was an LGBTQ+ organisation. Their ‘goal’ was to have a permanent worker. The issue became one of who should employ and manage this worker. The user group did not want them based in the hospital because that would have been a conflict of interests. So, the idea was floated that it should be a big London-wide LGBT charity. This turned into a really difficult situation as seen in the hundreds of emails we had access to. The big charity had no idea at all about mental health and what kind of person would be suitable in the role. They focused all their energy on general issues to do with the LGBTQ+ community and could not see that mental health had its own specific dimensions. In effect, the group failed in their goal because the two organisations simply could not talk to each other. The final thing to record is the toll this takes on people. By the end of the three years people in some of the organisations were utterly exhausted and had to take time out.
Activism and research
The period I am talking about spans from about 1975 to the present although there was activity before that. I became involved in user politics in 1986. I was unemployed at the time but had worked for ten years as an academic and so I had some research skills which I tried to put to use for the movement. This wasn’t unusual: members of the movement used what skills they had to progress change. There was a reasonable number with research skills. So, at that time there was a close link between survivor activism and survivor research. I described myself as having a ‘double identity’ – service user and researcher. But this was not an additive thing. It was synergistic: to use experience of distress and services (either used or refused) to inform your research work.
This close link is diluted these days. Newer people want to be ‘researchers’ and, yes, they will use their experience but there is less of an emphasis on research as activism or on research having its roots in activism. Some are still driven by social justice principles, but some are not. The loosening of the ties suits the mainstream very well because we can be positioned as researchers who happen to have, in today’s terminology, ‘lived experience’. And for those in academia there is pressure to downplay the activism and ‘measure up’ as a researcher.
This close link was not always a bed of roses. Organising activist events and doing research projects, together with others who have experienced distress and services, can be exhausting, even bringing back bad memories. You can be pulled in several directions at once and some people have very high expectations. People get burnt out as happened with the group described in the last project above. Some people refer to this as “emotional labour”.
The other development is the internet. Some of it has been positive as when during COVID, ways were found to run peer support groups electronically. There was a scheme to provide less well-off groups with technology. Some internet groups retain a very radical edge, for instance Recovery in The Bin (RiTB) or PD in The Bin PDiTB). RiTB works hard on the welfare benefits front and produces articles although it is primarily a Facebook group. Other groups are more like information sharing or mutual support. There is nothing wrong with this but the link between activism and knowledge is more or less absent.
What of the future? The general climate is not promising. (I am writing this as Russia invades Ukraine.) Economically and politically there are just calls for more investment in mental health. Nobody asks what the investment will be for because it is taken for granted that it will be more of the same. For some of us at least, the whole point has been to change this. This sounds like a depressing place to end. But we have not been crushed and we are not going away. The last reference describes one of the ways that activism carries on in the face of austerity.