CHAPTER XX: The EURIKHA Project
Interview conducted with Diana Rose on Sunday 3rd and Mon 4th April 2025 [20250403-151217, 20250403-163112]
Nikolas Rose
Okay, so you said a moment ago that you thought the researchers at the IoPPN (Institute of Psychiatry, Psychology & Neuroscience) couldn’t do without you and that it seemed as if this was the beginning of the almost obligatory involvement of survivors in mental health research. And central to that, your experience of that was this project that was funded by the Wellcome Trust, which became called EURIKHA (Explorations in User Research, Impact, Knowledge and Activism). So can you say a little bit about how you set, how you imagined that project and how it came about and what happened?
Diana Rose
First, there was a lot going on before that but I want to concentrate on EURIKHA because it remains topical, believe it or not. The spur was very funny, actually. I broke my arm, so I couldn’t type. I’d already decided that I was going to go for a big grant. And the Wellcome Trust then, I don’t know if it has now, had a social science and humanity strand. I had a couple of discussions with a guy called Nick Vogelpoell. But I did not have a clear idea of what it was going to be. And then I broke my arm and couldn’t type. So I read all the stuff that I had used 20 years before in my teaching. feminist standpoint theories, disability studies, radical black studies, queer theory, a lot. So I thought I would just take this as a framework and see how it works with people who are designated mad. Now, to do that, I wanted to break the myth that we couldn’t think, that we lacked reason, so dear to the Western Enlightenment, What Miranda Fricker called Hermeneutic Injustice. So the sample of people we interviewed was not random. It was high profile change makers right across the world.
Nikolas Rose
Before you tell us about the actual study, is this how you framed the study when you posed it to Wellcome?
Diana Rose
Well it was, but it wasn’t and it was partly my fault. Wellcome understood it as a form of PPI or what was already happening in user research. Whereas I’d already thought – and my colleagues in EURIKHA later confirmed – that knowledge making is not confined to the academy. So the people we chose were not necessarily academics.
Nikolas Rose
All right.
Diana Rose
And they were just chosen on the grounds they were doing new things and making new knowledge – in any setting. BIAS screamed the mainstream, completely missing the point.
Nikolas Rose
Just before you tell us a little bit more, I just want to get a sense of how Wellcome came about to fund this bit of research.
Diana Rose
I think it was because, I think the turning point, which I thought would kill the project, was that I made a critique of Barbara Taylor’s account of Friern Barnet mental hospital which I mentioned earlier.
Nikolas Rose
This was in the in the interview with Wellcome? So you made a proposal, it was shortlisted and you were interviewed for it?
Diana Rose
Yeah. And they asked me all these PPI questions, and they asked me why was I talking about Donna Haraway’s work 20 years ago or 30 years ago and all that, which I was easily able to answer. And then the chair, who was a historian, asked me what I thought of Barbara Taylor’s book. So I said, I thought, I don’t know what colour it would be, but it was a psyewash, psychewash. I’ve explained already why I disagreed with Barbara, because she was there in very unusual circumstances. If she called the book “my experiences in a closing asylum”, that would have been one thing, but she called it The Last Asylum, as if this was general. And a loss. So I just rattled off what I thought about it, thinking I was digging myself into the sands. But Nick, I think it was Nick, although he might have been replaced by then, said to me, the thing that swung them was the Chair. Apparently he said, that’s the best critique of Barbara Taylor’s book I’ve ever heard. So, is that enough?
Nikolas Rose
Okay.
Diana Rose
I set about recruiting staff, which was very hard, partly because people applied, but there was no hope in hell that they would come, because they were from the other side of the world and already had jobs or whatever. But they were so well qualified, they had to be shortlisted. But I ended up with a team of people who had all, in some way, been users of mental health services. And to begin with, we were just tabulating the people and their organisations that we might interview. And then, you would remember this well, I collapsed in Brazil. I had sepsis, I had a heart attack in the ambulance. An ambulance is the best place to have a heart attack. I had pulmonary embolisms in several of the lobes of my lungs. What else did I have?
Nikolas Rose
Yeah, that’s it. That’s about it.
Diana Rose
I had something else as well, sepsis, heart attack and something else. Something else devastating. Anyway, you’ll remember better than me that I was picked up on the streets of Rio.
Nikolas Rose
Yeah. Of course the other thing was your terrible neuropathic pain condition, that you’d had for some years, which you were having to cope with all the time you were working on EURIKHA
Diana Rose
Actually I was found by some people from the favela, you know those ‘awful’ people, who searched my handbag, found the hotel I was living in with you and went and found you and told you and I can clearly remember the last thing before I finally lost consciousness. This guy with a turban said to you, “she’s one of us”. I have no memory of it after that so you’ll have to tell the next bit.
Nikolas Rose
Okay so you were taken to hospital in the ambulance where you almost died, but were resuscitated by the paramedics, and then were in hospital in Rio for about six weeks overall. You had three weeks in intensive care – the first week or so in an induced coma – and then three weeks in rehabilitation. Obviously that was a pretty horrendous physical and psychological blow to you.
Diana Rose
And you.
Nikolas Rose
And to me as well. And what you didn’t say was that you’d been in Rio as part of the research, to interview service users and service user organizations, and in fact, you had been in Rio, hadn’t you, to interview a famous Brazilian mental health activist?
Diana Rose
Oh, the guy who was actually in the 1950s. Yeah, that’s right. Yeah. Yes. But also other people, like the famous Sergio Carvallo, who dropped us as soon as he realised that he wasn’t going to get anything out of us.
Nikolas Rose
So you were basically making research contacts in Brazil, and finding out a little bit…
Diana Rose
Sao Paulo and Rio are the two places I went.
Nikolas Rose
… And finding out a bit about the development of mental health activism in Brazil and then this horrible blow came up and you were hospitalized close to death and then ‘medivacced’ back to the UK.
Diana Rose
You better explain what that means.
Nikolas Rose
That is to say you a doctor was sent out to assess you to see whether you were fit to travel back to London and then they organized the transport and the doctor came back for the whole journey sitting alongside you with the emergency healthcare kit in case anything went wrong.
Diana Rose
Yeah, that’s right.
Nikolas Rose
And I can’t remember what dates we’re now talking about.
Diana Rose
2017, it was 2017.
Nikolas Rose
OK so in 2017, you’re back in London. The project, EURIKHA, is being set up. It has already decided, well, you mentioned this, you didn’t really say too much about it, that it would proceed by interviewing not anybody, but particularly prominent individuals in the mental health activist movement.
Diana Rose
Yeah.
Nikolas Rose
OK, just before we get back to the research project itself, can you tell us a bit about the Interviews you did during the project. I know you’ve got very clear memories of some of the interviews that you did in the course of that EURIKHA research with prominent mental health activists, knowledge makers, some of whom who’ve now died. So would you like to tell a little bit about what stands in your memory from those interviews?
Diana Rose
Of the ones who had died, the most interesting thing was that they all had had jobs with the title ‘user researcher’ in. But they didn’t believe they measured up the title, that they weren’t proper researchers. For them proper researchers were people with PhDs who could do statistics. It wasn’t that they were stupid because they generated sophisticated arguments about psychiatry, but they were kind of in the grip of what it meant to be a researcher. So there was one instance in particular where a woman had amassed a collection of artifacts or people who had died in a psychiatric hospital and left behind them boxes full of personal possessions plus their initial interview with a psychiatrist, completely unedited. And yeah, one of them had done that. So when she was offered a job as a user researcher by her manager, the manager said, she said, well, I’m not a researcher. To which the manager replied, well, what do you think the artifacts project was? And the weird thing is that if she had done that project today, it would have been very highly thought of. But somehow they had this image of a researcher and it didn’t fit what they were doing. I was surprised by that. There was lots of stuff about organisations in the interviews that the details are not worth going into. But for example, one person described how when we were told to formalize themselves, they spent a year drawing up a constitution. Most groups just took a template and filled it in. So the interviewer asked this person, why did it take you a year? And he said, because the membership had to be consulted, it was a democratic thing to do.
Nikolas Rose
So was this idea of democracy amongst the users a common theme amongst these interviews?
Diana Rose
All the groups represented themselves as democratic, I think, but there was an underside in that a European participant said that the women were referred to as the helpers and they had to make the tea and at most take the minutes. So democracy yes but also patriarchy, a funny mix.
Nikolas Rose
And were all these people that were interviewed, were they independent? No? Some of them, the artifacts project, was a researcher, did they have jobs a bit like your one at SURE (Service User Research Enterprise)?
Diana Rose
No, she worked for the government in a unit called consumer affairs, which to begin with was very traditional questionnaires about satisfaction and things like that, but it became more radical when she came out. Some people were very sympathetic but as soon as she mentioned coercion, all doors closed. but from that point on she made it her mission to disseminate knowledge generated by survivors. So it’s complicated.
Nikolas Rose
Did any of the other researchers publish stuff in the way in which you published stuff working with academics?
Diana Rose
Only Judi Chamberlain and Jean Cambell, both in the USA but different politically.
Few did it in the way you mean – in academic outputs. But there were magazines, newspapers, a lot of local stuff that has disappeared. It is a big problem as we will see.
We did not interview Judi Chamberlain as she had died long before the project had begun. But there’s a vast digital archive of her work that’s searchable. So what was the question?
Nikolas Rose
I wonder if any of the other people that you interviewed of these prominent people have published their research, or published their findings, or worked with others to come.
Diana Rose
In academic journals, just Judy. But they did publish pamphlets, blogs, magazines like Phoenix Rising.
But I think we have a problem here. You are asking questions as if these participants were following regular academic career paths, for instance, about publications. The whole point is that though some were doing that, most would not or could not. Peer review, for instance, is an enormous obstacle should you want to try. Our first paper in SURE, on outcome measures of all things, took 5 and a half years to get published and finally appeared as a ‘Brief Report’. The reviewers just kept reiterating “this is not the way you produce outcome measures”. The conflict was basically between top-down and statistically driven (their method) and bottom up, starting and finishing with user expertise (our method). Their method was the only admissible method. It might be hard to see methodology as embodying power, but it does and is so ingrained it is invisible.
We might come back to this.
Again the European participant had been diagnosed with that awful diagnosis, borderline personality disorder and she just felt rage and insulted and whatever you might think about it she came across literature on complex post-traumatic personality disorder. Complex, post-traumatic personality disorder.
Nikolas Rose
It’s a controversial diagnosis at the moment.
Diana Rose
And it was very controversial in 1980 and that sort of gave her a narrative. It gave her what Miranda Fricker would call, it filled the hermeneutic gap. It gave her the words to speak her rage. And there were others, obviously, all together in the Global North, there were about 50. The easiest to find were the people who called themselves user researchers and unfortunately they were the most boring because they had bought the PPI model. They ranged from somebody who expressed delight when a professor called them a researcher rather than a user researcher to somebody who did collapse, completely collapsed under the tension of being a user researcher in a mainstream department. But apart from that they were just doing small projects together with other people that didn’t change much. The really interesting people were outside academia, some of them were living on the streets, these were mostly Americans, some of colour, and they were generating critique of psychiatry and setting up safe houses, crisis plans for people, things like that. Knowledge into practice on a small scale.
Nikolas Rose
So did you get the sense that some at least of these people that you interviewed had either tried to or made a difference to policy and practice?
Diana Rose
Locally yes, but generally no. The tone of the five interviews with people who had died was despondent. It’s not accidental that it was the time of the first administration of Trump. Trump closed a project on peer support. Now I didn’t believe Trump knew anything about peer support, so it was delegated. But nevertheless, it was shades of things to come.
Nikolas Rose
So were these five people in America, were they user researchers in America?
Diana Rose
No, the five people who had died were from all over the Western world. But they wouldn’t call themselves user researchers because they thought researchers were highly qualified. They were activists. They were activists but they were generating new knowledge.
Nikolas Rose
Yes knowledge, what did you call them ‘knowledge makers’. Did they themselves accept the idea that they were knowledge makers or is that your term?
Diana Rose
That that’s a retrospective. We tried to stick as closely as we could to their language but we analyzed the data and they were producing new stuff and in particular the ones that were on the margins were producing very new stuff but it wasn’t disseminated. For example critiques of coercion. They were putting it into practice in the form of crisis plans and peer support and that is an alternative way of making knowledge.
The other interesting part was that one of the researchers interviewed five Māori people and one of these Māori people was doing, we would call it a research project, they didn’t. It was about coercion for Māori who are over represented in seclusion. Now Māori society is very interconnected and so to be in seclusion for five days with no contact with anybody else, coming from a society where everybody is connected was really really bad news for them, but of course that wasn’t published, nobody would touch it.
Nikolas Rose
So the overall sense I get from you just reflecting back on those interviews was that the people you just talked about were pessimistic or exhausted.
Diana Rose
The five people who had died were pessimistic because they thought the modern user movement had been so diluted that it meant nothing. In particular the woman who had done the archives project had the idea of placing peer support workers in standard teams and she gradually saw that become commodified. So non-users would set up a bureau of peer support workers and just send them off to teams alone and that that pertains in this country as well, the UK. But peer support workers are supposed to be further along on their ‘recovery journey’ so their asset is to share their experience of recovery. But they were consistently told that they were breaching boundaries. How were they supposed to know what the boundaries were? If on the one hand they’re told to share their experiences on the other hand they’re breaking boundaries, it is a the double bind. Tamar Jeynes has written a lot on this.
Nikolas Rose
And did any feel that they had made a substantive change or they’ve been involved in a substantive change? You talk of recovery and some say recovery was co-opted. It began as a service user.
Diana Rose
It began in New Zealand and America with Patricia Deakin and Mary O’Hagan. Mary visited Camden Mental Health Consortium and she wrote a book called something like “Journey on my way home from Mars” and a subsequent one called Madness Made Me. So yeah she did publish and I think she was instrumental in change in New Zealand, which is where she came from – which speaks to something that you and I have said before. One of the problems with global mental health is it wants to generalise Western psychiatry everywhere but you can’t because the conditions of existence of people who get designated mad are so different from Western psychiatry that the messages don’t work.
So Joseph Gone is an anthropologist, psychologist who has looked at intergenerational trauma in First Nation Canadians. First Nation Canadians and talks about how children were taken away from their communities and put in residential schools. They were not allowed to speak their native language and they were not allowed to practice their native rituals. And this is a story that’s passed down from generation to generation, not in writing but oral. And so of course it morphs as it proceeds. But he is of the view that these histories of being stripped of your native practices and tongue are much more precious than any Randomised Controlled Trial. He’s not a service user, I don’t think, but he says he works for people with disabilities.
Nikolas Rose
He was not one of the people you interviewed for the project?
Diana Rose
We didn’t interview him. We interviewed someone who is now very well known, she wasn’t then, who told us about going into a halfway house for street homeless and recovering alcoholic women. The place was filthy, crawling with bedbugs and all the rest. They were told to put their ruck sacks in high places. And in walked a team of psychologists and asked these people, I mean, it’s so comic, but it’s not. Would you like to learn a therapy about hearing voices? These people had no money. They lived from day to day on, you know, the choices between cheese and milk in the fridge. And yet these people thought they could benefit from hearing voices therapy. The discrepancy between what even radical academics were proposing and the real lives of these people were just vast.
Nikolas Rose
So that’s a pretty depressing set of stories.
Diana Rose
Mm-hmm, but it’s also an important set of stories that if you can show that these discrepancies are huge, maybe maybe maybe people will think again – after all Robin Murray wrote a paper that recanted his views on the use of maintenance medication – at least up to a point. I asked him why was there so many authors on the paper? He said I needed a lot of people because otherwise people would have thought I was dementing!
Nikolas Rose
And maybe just that just leads maybe to one last question. Did any of your interviews talk about their experiences with medication or not?
Diana Rose
No, they talked about it, but mostly forced medication, not SSRIs (obviously!) but forced administration of neuroleptics. It comes across as if they’re held down, they’re injected and they see the light. I don’t think it’s quite like that. I know somebody, for example, who was held down and injected and I said, how did you feel? And she said, well, I’d been violent. I deserved it. And nothing about the coercion, just yeah, these are professionals. Anyway, the first time I was held down and injected, I thought it was punishment. It took a long time for me to realize it was abusive.
Nikolas Rose
Okay, anything else you’d like to say about those interviews before we wrap this little bit up?
Diana Rose
Just that, you and I differ on this. I think the Academy constrains new ideas by marginalized groups. It doesn’t just constrain them. As we can see from EURIKHA, it silences them. So I made the decision a year ago not to publish in academic outlets. I wrote a column in Psychiatric Services saying that and got a few, a few very positive responses from mainstream psychiatrists. Howard Goldman was one and really positive. I think that, there’s a lot, there’s lots in detail about the constraints of academic publishing.
<PAUSE IN INTERVIEW>
Nikolas Rose
OK, shall we loop back now, and to your experiences when you returned from Brazil. Obviously you must have been still pretty fragile at that time and for some time after. You were still having medical care, but your team was still there and you went back to work at the IOPPN.
Diana Rose
Yeah. But the local GP was useless because if you’ve been in intensive care for more than two weeks, you are supposed to be followed up by your local GP. They did zero. But anyway, probably I felt strong enough to go back after another three weeks, four weeks. I’m unkillable (but see later). I went back to work. I expected people to be sympathetic, stupid me. People were very angry that I had gone away. And I was shocked. I had a therapist at the time. I think she died because she’s been taken off my WhatsApp list. She – Sally – was very old when I was seeing her – 81. She had worked at the Women’s Therapy Centre. I wish I had seen her years ago.
Nikolas Rose
Why do you think people were angry with you? Because you also came back, because the other condition that you had was a… which you had before you went to Brazil, was a debilitating neuropathic pain condition. So, you were clearly….
Diana Rose
Fragile.
Nikolas Rose
Clearly fragile in many different dimensions.
Diana Rose
I don’t know, Sally said she didn’t really know, but it was like Mummy had gone away. They couldn’t forgive her. And then it was downhill from there.
Nikolas Rose
The relations with your team deteriorated.
Diana Rose
Yes. I secured for one of them £10,000 to do a special project on black service user movements, which is an invisible thing in England. But anyway, the issue of race came to dominate the whole project. So we were given, we were given, not me, loads of stuff to read on race. Sara Ahmed, Audre Lord and people I knew like Paul Gilroy, for example. First of all, one member of the team was fingered at as racist. And I had to discipline her. She was racist. In a subtle way. And then it was my turn. And they said that I did not recognise my privilege and my power. And when I got upset, they said, that’s white fragility. Maybe it was. But it got to the point where I’d be sitting in a meeting with two of these people and they would be passing each other signs. About who was to say what and when? I could see it. I’m a sign language user and super-attuned to such things. And, well, it culminated in one of the team, a service user, accusing me of harassment and I got sacked.
Nikolas Rose
It was a little bit more complicated than that, wasn’t it? You decided at a certain point, this was partly to do with obviously the problems in the research team, but it was also partly to do with your own physical health, that you would take retirement because you were of retirement age.
Diana Rose
No, no, no. Not that I would give up the project then.
Nikolas Rose
Right, because then you would… come back, which was quite common in those days, as a part-time professor to continue to the end of the research.
Diana Rose
Yes and then I got…
Nikolas Rose
You agreed to that…
Diana Rose
Stop interrupting me. No, no, I didn’t take it then. It was being negotiated, and then you will remember this. I got a phone call saying, what was he called, the Dean?
Nikolas Rose
Ian…
Diana Rose
Ian Barrett? No, that’s another Barrett.
Nikolas Rose
Everall.
Diana Rose
Ian Everall, I got a phone call saying Ian Everall wants to have a Zoom with you. Now, I thought this was about my retirement because I wanted to retire here to France for the sake of my health. And they made that a sticking point. They said you had to live in England. But, he said, I’ve had complaints about your behaviour. I said, what? And then he sent me a dossier running to about 100 pages, which some people have drawn conclusions from without having read it. And it said all sorts of ghastly things about me, most of which were at least skewed. So much so, that we contacted the union, and the union guy was very good. But there was a conflict of interest because one of my accusers was on the union committee so the case was moved to the central union who knew nothing about the issues. So, we, you correct me if I get this wrong, we hired a lawyer, yeah? Yeah. Um…
Nikolas Rose
Yes, we we decided that we would hire an independent lawyer to advise us and the union said well you can’t have a lawyer to advise you if the union is working on your behalf so you’ll have to choose between the central union knowing nothing about the case and your personal lawyer and after some discussion and advice from others we decided to go with the personal lawyer.
Diana Rose
But it was a mistake
Nikolas Rose
Yes it was in retrospect.
Diana Rose
I don’t think it was a mistake, but anyway, I don’t know if the accusers or their friends know anything about the institutional aspect of this. I have a friend called David who says he thinks it was the institution that made the real mess. It was King’s that was actually at fault. It was King’s doing gesture politics. Anyway, in the end they sacked me and we missed the last plane out of London and back to France because of Covid.
Nikolas Rose
I would just slightly revise that memory. It was actually at the moment when you took retirement that the complaints against you came to light. But they had them for months. And at that point you were in a paradoxical position because you were no longer an employee of King’s and yet the complaints were being considered as if you were an employee of King’s.
Diana Rose
Possibly.
Nikolas Rose
Yeah, that is what was happening.
Diana Rose
Oh, possibly. I don’t want to step into that part of my mind. Oh, no. (sobbing)
Nikolas Rose
Anyway, you were never subject to a formal disciplinary procedure.
Diana Rose
I was interviewed by some woman who quoted Angela Sweeney saying that she was reduced to jelly by me. This is the same woman who cried at my bedside when I was told I was dying of metastatic cancer and my best friend had to console her.
Nikolas Rose
No, I’m just trying to get the history right, so… This is part of the history. So, although there was an inquiry, there was never a formal disciplinary inquiry.
Diana Rose
No, there wasn’t.
Nikolas Rose
You had agreed to take retirement. It was not early retirement. But the decision was that you should not be allowed to be brought back on a 0.2 contract, which was what the original arrangement had been.
Diana Rose
And the excuse was because I wanted to live in France, yeah?
Nikolas Rose
Yeah. And also, because there had been this inquiry, and King’s accepted the result of the inquiry, that had you been an employee, it would be different, but you weren’t an employee, so you couldn’t be subject to disciplinary action.
Diana Rose
No. Anyway. Our lawyer said we should take the advice of a barrister about taking a case to court. And the barrister we spoke to said you’ve got a very strong case. A strong case in employment law is like 30% success. But you’ll have to wait two years.
Nikolas Rose
And two years was because of the backup of cases.
Diana Rose
It was a back-up of employment litigation, yeah. And at that point, I went crazy. To the point where I didn’t know where I was. I didn’t even know there were cars on the street. So I had to be taken everywhere in case I was run over. I was hospitalised and given this awful drug called Loxapine. All my psychiatrists in England said that it wasn’t used there. One said he had heard of it, but it wasn’t used in England. It was in France… I woke up in a hospital bed. I had no idea where I was. I could not move a muscle. Everybody was speaking French, including me, but I had no idea where I was. But I gradually came, too. And you, who could not speak French at that point, mugged up on the law and the words to say, to get me released. And they released me, but I wasn’t better.
Nikolas Rose
And before this, at the time when clearly this had affected you, so you were, as you say, going crazy, that we decided that we would not go any further with the legal action because of your mental health, not to mention because it was going to be very expensive, but because your mental health was so fragile at the time.
Diana Rose
And my physical health.
Nikolas Rose
And your physical health, that we didn’t know that you were going to survive.
Nikolas Rose
And we tried to put all that behind us.
Diana Rose
Some hope.
Nikolas Rose
But there’s a certain thing which I need to mention should be said earlier in this, that as the condition of, despite the fact that you were not a King’s employee at the time, as you left King’s, King’s decided that you could no longer run, as had been intended, the rest of the EURIKA and…
Diana Rose
I could have no data. I could do no analysis.
Nikolas Rose
They said that you had no rights to any data, that they were the data controllers and that they would have complete control over any publications arising from the data and that you would have nothing more to do with it.
Diana Rose
And they wrote to all the participants, to tell them to have nothing to do with me.
Nikolas Rose
And that was the end of your involvement with EURIKHA.
Diana Rose
No, it wasn’t. It wasn’t, because every time EURIKHA came up I was hammered. And so we come up to the present, I decided that five years had passed. Enough was enough. I had plenty to say. What they’d actually done was what I said had been done to us for centuries. They’d silenced. They had silenced the leaders of the user movement. So I wrote a paper on the history of the user movement. It was a case study of five people who had died in between the interviews and the time when I decided to pick it up again. The lengths that I went to to make it anonymous, I mean, I got proxy consent from two people because the consent form we had was so complicated I couldn’t make out whether they wanted to be referred to or not. I sent them the transcripts to trusted people, the transcripts, the annotations that the people had written, everything. I sent them a form saying that they agreed that it was a true record and could be used or not. Both proxies said yes. One was German, one was English. I wrote this paper. I don’t think it’s very good. It’s very academic. But the point was to participate in writing a history from below because histories of psychiatry are all triumphalist. The great psychiatrists, the great reforms, the great this, that, and the other. So I thought, not just me, but people thought we need a history from the perspective of those who were on the receiving end. And somebody called Stefan Blaney had written a paper on this and he said, the most powerful evidence is oral history. Well, that’s debatable, but at least this extended oral history because most of the pioneers of this movement have now died. At the most, it showed that there were people active in the 70s and 80s who had all sorts of ideas that today in mainstream academia would be acceptable or not acceptable but still read. So I submitted this paper to a very new, very obscure journal. They were very excited. And then they sent me this letter saying, in the course of peer review, some ethical and legal issues had come to light. And they said they contacted KCL and KCL wrote back to them and they quoted again that I had no rights over the data, no rights to analyse and no rights to publish. It’s completely disputable who’s the data owner. And to the data to analyze, to publish, blah, blah, blah. The journal were very apologetic. They were really sympathetic, but they said they couldn’t afford a legal case.
Nikolas Rose
Yeah, but you did not present or analyze data in that paper
Diana Rose
The odd thing was there wasn’t a single piece of data in the paper. In qualitative research, data is direct quotations. There were no direct quotations in the paper. So even then, King’s is skewing everything. I couldn’t object to the journal’s decision. I could see very well their point of view. So it is not published. It’s now just on the RITB [Recovery In The Bin] website, non-academic, but very smart people. And I’m just waiting to see. There are two options here. Either I have a really awful enemy, it’s quite possible, or King’s is still tracking everything I write. That sounds paranoid, but it is possible. You know people tell us that they are not allowed to say either of our names in one part of King’s. So I just asked the RITB collective would they put it on their site, and they did. I checked yesterday that it was copyright me so that they could not be hammered. I was reassured that it was. So if they take me to court and bankrupt me, at least some of it is out there. Because…
Nikolas Rose
… I think we should stop in a minute…
Diana Rose
… Because right now I am really sick and I will not have this legacy when I die.