Emerging themes.

03Original abstract

From the outset there was no intention that Counterpoint would drive towards any particular consensus. This session allowed participants to name points of agreement and disagreement, and to voice possibilities that had not yet found expression. It opened with three reflections from Christine Bigby, Ann Lewis and Greg O'Brien before comments were invited from the floor. While we are all aware that there is a diversity of intellectual disability (ID), I want to focus on people with more severe ID because that's the group that tends to be ignored. My first theme is who is authorised to represent people with ID and speak on their behalf, which Licia brought up really well. The problem is that we as policy-makers, and we as academics, have constructed a particular notion of people with ID which this meeting has shown to be really problematic. We have constructed people as normal in policy documents such as The Same As You, Ordinary Life in which we have paid attention to everyday aspirations, and imposed that on people with ID. Our policy goals are fairly fuzzy but mostly revolve around participating in the world and being productive, and where having relationships with other people without ID are the gold standard. All those things have ascribed normality and underpinned policy for years. And we've failed miserably to achieve any of them. Why is it that we've failed so badly? I think some of it is the way we've constructed what we're trying to do. The second theme is that we have given people with more severe ID the status of citizens and consumers. Yet it is now being argued that they are poor consumers, are ill informed and don't have the rationality to make decisions – perhaps they are subjects without agency, non-active agents. Our policies and our services haven't given people the tools to help them play those roles: we certainly haven't given them emotional well-being and security to venture out into the world, we haven't given people the one by one help to build relationships. We hear the stories from America that people can build relationships with other people in the community, but in Australia certainly we've focused on a behavioural approach, trying to mould people's behaviour; we haven't tried to mould people's emotional well-being. There's no way that we are willing to spend the resources to build strong relationships for everybody in our service system so everyone has got somebody who really cares about them and knows them, who isn't a family member, who isn't a staff member. We just haven't got the resources to do that, and we haven't done it. The third theme is we've focused almost exclusively on the individual, on trying to change people with ID and make them normal and give them opportunities. We haven't changed the social context in which people are to be citizens. We haven't changed the structures and the attitudes and the processes; we still have a world for people who are active, who are able, who are intelligent. We haven't changed the expectations that we have of citizens, so we've set people up to fail. We haven't carved out jobs for people that are doable within our current world. The social model of disability has been used primarily to change the world, to make it more accessible for people with physical disabilities, but it has hardly considered the situation of people with ID. The fourth theme is rethinking how we construct people with ID, where Licia's idea of valuing ignorance is really important. We need to accept that we don't know what life is like, what the experience is like, for somebody with a severe or profound ID, and stop trying to aspire to make their life like our life, because we're trying to achieve the impossible. We need to construct people as human beings, not as citizens and not as consumers: to accept and try to know each person better for who they are rather than what we want them to be. One way of doing that is to reduce the distance between them and us. All of us in this room know somebody with an ID really well. We have a sense of that person as a person. Very few people in the outside world have that sense, so that gives us some authority to speak about that individual. Drawing on Reinders' theme, we should be seeking to build relationships between people with ID and other people. Relationships where you come to know somebody and to value them for themselves may be all we can aspire for people with more severe ID. We don't really know what keeps together the relationships that parents, family members, and close others have with people who have ID. It's not reciprocity in the normal sense of the word, it's not the trappings, it's not instrumental giving. Nevertheless the people who have close relationships gain something from it that keeps them there. Understanding the nature of these relationships may give us insight into the humanness of people with IDs, and not only give us a better understanding of how to portray them to the outside world but also clues about engaging others in their lives. It's been an implicit thread through much of what has been said over the last few days: how do we give people with ID a voice, genuinely, authentically and really engage with that. It was a point Licia made, about with what authority does who speak about what; how do we give people with ID; or help them to have, a sense of agency. One of the major tasks for the field is to develop a portfolio of methods and methodologies so that the sort of ends that we've been talking about can be realised. We talked with children who have ID in mainstream schools about their experience of integration/inclusion. Some of them had a member of support staff with them, and that they did not like the fact that this person was sellotaped to them. The schools we fed back to found it quite insightful that the children were flexible and didn't want a fixed solution. Their parents, who we also interviewed, did want a fixed solution, because for them it was a guarantee of resources. The policy-makers wanted a fixed solution, because it was neat and you could tick boxes and identify things. But the children didn't, and they were very clear. It's a source of great concern to me as a psychiatrist working in the forensic services that most of our beds are now not NHS around this country, most of the 3000 beds that we have are run by private companies. So what we're doing is recreating the situation before the NHS was created: problems of governance, of accountability and of standards. I found the focus on choice, that faced with stress people choose what is familiar . . . very insightful. Particularly because so much of our planning is in times of stress when we choose the safe familiar path that certainly stifles creativity. The Brooklands presentation and also the one on an attachment certainly brought to mind how crucial it is that we bring humanity and sensitivity into our work. I'm going to close on an insight that I received when Chris was speaking, which concerns that (historical family) picture opposite me there. In the picture what you've got is children being represented, as they were at that time, as little adults, because the idea of children as separate people, with separate needs, wasn't around. We need to have a different way of respecting the inherent humanity of people whom we serve: not just regarding them as different versions of ourselves because they are themselves. What struck me is the contingent nature of things. Greg's comment that our conception of childhood is quite modern reminds us that there was a conceptual shift. Chris has suggested that we need a kind of rebirth, to reconceptualise or to differently conceptualise people with ID. We seem to have got ourselves into a bit of a fixed state and we're coming against these walls: if we just continue to conceptualise people in the same way then we'll get the same kind of problems. The other theme concerns belonging: when is in out and out in. If you do belong are you belonging in an in space or an out space. It reminded me of the 17th century Dutch writings around hierarchies of art where still life was one of the lowest forms of art because it dealt with the daily when the grand stuff portrayed history. You get the same in literature now with sci-fi and fantasy being regarded as very low-brow: such value hierarchies are actually not a rule of the universe that says that it must be this way, it's just in our heads. Ideas about ‘belonging’ invite us to get away, to think a bit differently: we're not quite sure if it's OK for people with ID to belong to an out group or not: is belonging to an in group really better? There are different ways of conceiving things: the way we label and ascribe value isn't a fixed order. I think nurses have become obsessed with standards of care and ways of doing things. When I watched the video of the original Brooklands study, I was reminded of my initial nurse training in the 1980s. At that time we were so entrenched in institutional care that we couldn't make the changes to establish different ways of caring. Then there was a time when we began to relate to people differently. My concern now is that current policy is robbing qualified nurses of those new ways of relating. We need to begin to create the spaces to think differently again. One of the things I got from this event was about scale: where the problems lie and therefore where the possibilities for change are. I've become less optimistic about large-scale change at a systems level in favour of the opening up of spaces lower down, and within those the imagining of different ways of doing: constructing different roles that people in society can occupy as a citizen, a valued person. For me as an empirical researcher working in the ethics of health and social care, the discussions at this meeting have made me realise the need to ask myself some serious questions about what it means to undertake research in this area, and particularly what it means to work at the boundary between good research and good practice. The Brooklands project is inspirational because of the very fact that innovations in the delivery of services to people with ID were interwoven with a deep intellectual engagement with the good in this form of practice. Maybe those of us who are involved in ID research need to think about being in a position to take the lead in forging changes on the frontline, by thinking carefully about the ways that we devise and undertake our research studies. The wake-up call for me this couple of days has been emotionality. In looking at what makes a good care worker in dementia care I realise that I haven't used the word emotionality or the concept of emotionality so far: that is going to be a very rich focus for us to reinterpret our work. Many of our discussions have been a response to some key problems with the research enterprise in ID. The first of these is the failure of the sociological imagination, in the sense that we have ceased to think sociologically about the lives of people with ID and the services they receive. Second, much current research in this field is locked within paradigms that are no longer productive. As a result, there are some key questions that we do not even address, let alone answer. An example is research into residential care. This has been of a very high standard, but is dominated by a methodology of standardised questionnaires and observational techniques. These are now of declining validity because staff are increasingly aware of the answers they are supposed to give and the behaviours they are supposed to display when observed, even if these do not reflect day-to-day practice in the small institutions in which they work. As a result, we do not know the extent of abusive and neglectful practices experienced by people with an ID. In addition, the main focus of residential research has been the individual small institution. Little attention has been paid to the fact that these are increasingly being managed by very large organisations, so that the individual small staffed homes are more like dispersed wards rather than autonomous units. We do not know the extent to which this results in the rule-driven and institutionally-focused organisations of the kind described by King, Raynes and Tizard in their original research into mental handicap hospitals. Finally, current research has little to say about the emotional lives of people with ID. All of us wish to be loved, and (almost) all of us prefer to part of a circle of friends. The neglect of this topic may be because it is difficult to measure, but I think that the main reason is the materialist orientation of public policy in this country. This point has been well made for the wider group of disabled people by Tom Shakespeare – a man worth inviting to the next of your gatherings. To what extent is a journal there to be the medium to promote science and to what extent are we there actually to try and lead the research agenda? I have been increasingly pushed towards special issues as a way of trying to lead that a bit, warning people that there are special issues ahead because that might actually help them think about what they might do. My own thinking today is also what is it that we haven't addressed? Someone mentioned (the report into poor health care for people with ID) Death by Indifference and there is the issue of health inequalities but actually my suspicion is that that is not fundamental to people with ID, it is actually a much broader issue about the vulnerable people within our health service. One of the things that struck me forcefully over the last 3 days is how many counterpoints within each of these concepts and practices and sites and nodes there are. So for example, inclusion is not just a wholly good thing; there are these very complex dimensions. To rethink these various sites and ideas with this notion of counterpoint: avoiding binary thinking in preference for multiple points of understanding. It's been a huge privilege to be here. I've learnt more by reading those papers and just being here this morning than I have learnt for a long time about something that I now realise that I knew very little about. As Chair of an NHS Trust that provides services it's been extremely thought provoking. I take from this meeting deep disenchantment with the status quo in service delivery, the way we actually deal with people with ID, and also an incredible willingness here to change things. So I am deeply encouraged by this. Many of the dynamics are going on in an incredibly fragmented system, if it is a system at all. If we think that there is a possibility of introducing change by assuming that there is some sort of direct relationship between research, policy, service organisation and frontline practice, then I think we are very misguided. It is a far messier process. Recognition of how messy that process actually is and how diverse the pressures on service managers, researchers and politicians are, takes us maybe a bit forward. What we need to do is to create spaces where we can think and act more radically. We also have to remind ourselves to be courageous as well as create space to be courageous. To have this courage means sometimes allowing people to fail. Yet when things go wrong careers fail: it is that pressure that we need to lift. One of the things I've really appreciated about this setting is the willingness to challenge orthodoxies: to say it doesn't have to be quite like this. It ties up with risk. One of the things that really struck me about the Brooklands film was the extent to which these kids were being allowed to do incredibly risky things. Somehow all the vitality in there was pushing against health and safety boundaries. Some of what we've lost, or some of what has been imported, has been a notion that if things have gone wrong then somebody has to be to blame and therefore all of us act in ways to make sure that we don't end up getting blamed. And while that is true in the physical realm I think it is also true in the intellectual and conceptual realm. We need to take the risk of saying we shouldn't simply be treating people with ID as a version of normality; we should be saying there are maybe things that are distinctive about these people and that maybe we need to attune to them. That is quite risky politically. One of the things I have appreciated about this setting is that we've been able to do some of those thought experiments; I'm concerned about how much riskier it is for practitioners to do it in practice. If you have this space to be wrong and to go into your own misdirections it is equally important that this space is being used to talk about these errors: to identify them, label them, criticise and have a more open debate about the things that we are trying and are going awry. At scientific meetings I'm quite often struck by the lack of critical debate. Here there has been this space where you can criticise ideas easily and also critically interrogate each other. What is it about this space whereas in other spaces in which you would expect a high level of critical debate, in your journals, in the scientific meetings and perhaps also elsewhere I often find this critical stance absent. It is not enough to have a good example presented as an idealised picture. It should, in my view, invite us to be creative in thinking about the critical questions that can be directed onto it and trying to solve those, address those critical questions just by plain, down to earth research. People will be saying to the things that we have been discussing, ‘Well fine but what about this, what about this, what about this?’ and this should put us to work. For me the spectrum that we've had here, from the intellectual scientific debate through to the discussion about quality, must end with the quality of experience that the individual has. And we are clearly at a point where we are recognising the failure of the current orthodoxy. The paper that Hans recognising the of the within care and Licia's paper version of seem to me to be things that we've really got to think about so that we can from the of the individual what the quality of their experience And find a way in we can give them a voice, but be about who has the to give that voice and who has the to that was struck for me and that with I think it was one to be is the idea that we may have the end of a a social in the way that we've constructed and it over the last few It if we had more and more time and more resources and we may not be able to do The problem may be something more There be for There's going to be a time of but there may be some in that if we think about the model rather than about the I that we have come to a space in human at in the world. take this idea that we have to thinking about the very of what we're thinking about in a different The of this meeting was set by the which set a of It is a that will be if people are to find the and to create the that will them to act into this of

Journal of intellectual disability research : JIDR, 2010 · doi:10.1111/j.1365-2788.2009.01245.x