Daniel and Jo Talk about Partnership Research

Jo: So why are you so keen on doing this sort of research?

Daniel: I think the thing for me is talking to people. The impressions of people – their experiences – that’s my . . . and the other thing is the satisfaction that . . . people are listening to what . . . and if it’s about learning disability I can give my own reflection. Because I’ve got my own reflection on it so I can give it a two-way front, or a three-way front . . . I can give my impressions as a gay man, a man with mental health problems and someone who’s got a learning disability. So I can like . . . and I do like helping now and again . . .

Jo: What would you say to people who said that doing research is not about helping people but is about understanding them and their position better.

Daniel: Depends what method you’re using doesn’t it and what you’re doing the research for. If it’s like the stuff I’m doing, if it’s like the project on people’s feelings about long-stay hospitals, it’s about how people have moved on, what have they got out of this, are their lives any more, is it improved, or is it . . . and with staff for instance . . . what sort of training would they need. It’s designed around, each way you design a research project is, if it’s staff, it’s more, it’s not too ‘in their face’ that they are going to worry about. But if it’s the residents and what sorts of things do they do . . . do they get choices, is their lifestyle any better, have they had relationships, have they got friends? And asking, actually, are they happy? Or the staff . . . are they actually making you happy or making your life happy? It’s about wanting to change things.

Jo: Am I right that you think that it’s better for adults with learning disabilities to do research with other adults with learning disabilities?

Daniel: Yes it is . . .

Jo: Tell me a bit more about that.

D: I think that you get – my reasons for doing that would be that we’ve got more in common. We face the same, similar, discrimination as a person who’s lived in a long-stay hospital – I’ve lived in a long-stay hospital – you’re going to get the same stories, impressions, you’re going to get . . . it’s not like you’ve heard it all before but you’re going to get . . . a more open story. They’ll treat you more friendly than . . . they would treat you, as more hostile, because they see you as power, a threat, what’s that word, lecturer, or someone from social services, so seeing you as a threat, as ‘What do you want?’ They’ll get that aggressive threat on . . . like ‘What do you want?’ What is the research for? And you know you’ll get that fear in people’s voices, they’re scared, they don’t trust you. They’ve done it before, they’ve . . . it’s like all those arguments about being used and research being for the researcher’s own benefit. And that’s why . . . doing research on learning disability it should be people with learning disabilities themselves doing it, with a member of a group, looking at like disabilities. I think I would build up more of a rapport, where you won’t get rapport if . . . no insults to you . . . they’ll see you as like ‘professional’ so they won’t . . . they may say they’ll meet you but they won’t. You know what I mean?

Jo: So powerful arguments in terms of the sorts of relationships that you can develop that would be much harder for me to develop?

D: For you it would be like getting blood out of a stone.

Jo: But if I was to spend enough time with people, right, um do you think I could do it?

D: And it would work if you had somebody in the background . . . who . . . if you did it totally solely on your own . . .

Jo: If you introduced me, I spent lots of time with people, if I offered my services to people and developed trust over time . . . it would get better, do you think?

D: But it won’t go like . . . over night . . .

Jo: So time would be a significant factor . . .

D: And you may get some like . . . they may remember you one week, but if they’ve got a memory problem and they have forgotten all about you – who are you? Don’t like you. Or behaviour problems – who are you? You know what I mean? They could turn nasty or aggressive – who are you? I’m not doing this. I didn’t say that.

Jo: They could turn nasty and aggressive with you too I assume?

D: Yes . . . if I brought you here . . . they will be more forgiving to me. It’s like I said before about the friendship issue. A lot of people with learning disabilities are very loyal. They can argue until the cows come home but their loyal friendship is loyal. They don’t . . . like I was saying there . . . those three friends in that research project I have known for fourteen, fifteen years. You have friends that long, because they don’t move on. Like yourself, you’re free to move up there, to get, to buy a house, have a family, because of us, we’re stuck in the system and we go to day centres, Gateway places, we don’t move, we sit in residential care homes, we’re in, sometimes in long-stay hospitals, we haven’t got that free will to – oh – buy a house – or even to have a family, to have a life . . . It’s like, that’s why so many friends are loyal. It’s their lifeline to some people.

Thank you very much for working with us Daniel