Introduction to Counterpoint.

03Original abstract

The ideas that shape contemporary services for many people with intellectual disabilities (IDs) were developed more than 35 years ago. In particular ‘The principle of normalisation as a system of human management’ (Wolfensberger 1972) has been highly effective in improving housing and support. Institutions that sometimes abused users and staff alike have been replaced by more intensively staffed services, which allow the most challenging people to live without restraints; and most developed countries have passed legislation to address anti-discrimination and promote disability rights. Yet as Reinders (2000) observed, while legislation can open doors it has little effect on what happens when people walk through them. Stigma remains a reality and extends to those involved with ID: parents often discuss being marginalised by neighbours and by other family members, while a philosopher described being ridiculed by colleagues for writing a paper on ID. Despite improvements on quality of life indices that focus on physical environment, research shows that the majority of people with ID remain socially isolated (Emerson 2005; Forrester-Jones et al. 2006). Most of their deep human contact comes from families. While relationships with staff can be significant, there is a need to address the high rates of service ‘churn’ that reduce their impact (Buntinx 2008), but this will not happen as long all shortcomings are attributed to the failed implementation of normalisation. The common assertion that there is no need for new ideas or perspectives, we must simply try harder to implement normalisation, has been interpreted by psychotherapists as a defence: it is easier to believe that ID can be overcome with effort than to acknowledge the pain of living with the limitations it imposes. Since Wolfensberger (1972) eloquently described the way that ideologies act to create barriers to change, it is ironic that normalisation has itself become such a dominant ideology. Normalisation's themes, played fortissimo and in major keys, tend to overwhelm attempts to imagine other tunes in related and sometimes minor keys. Discussions are underway in Norway, at La Trobe University in Melbourne, and among moral philosophers at the State University of New York at Stony Brook. Inspired by these initiatives, Nottinghamshire Healthcare NHS Trust decided to work with the University of Nottingham to create a small roundtable of national and international experts. We invited them to come together for 3 days in a spirit of anticipation: what if we thought differently? People were invited to examine disregarded themes, and create and explore new ones, in a resonant space where variations in unusual keys and dissonant sounds could find an audience. Twenty-seven people accepted the invitation. They came from different countries: Australia, Germany, the Netherlands, Scotland, USA and Wales, to meet English colleagues from Birmingham, Cambridge, Leicester, Oxford, Nottingham, Northumbria and Warwick. They also represented different disciplines: education, English and American literature, ethics, geography, history, management, nursing, philosophy, politics, psychiatry, psychology and social work. There seemed to be a shared feeling that this was the right juncture at which to hold such a discussion. It was time to generate new themes and consider how they might be brought together to better represent the variation and complexity of ID and its contexts. Papers prepared in advance were circulated, allowing for time to be shared evenly between presentation and discussion. A transcript of the discussion following each paper was sent to authors along with a summary of the final plenary. This special supplement publishes revised – in some cases, substantially revised – versions of most of those presentations. The supplement starts with two historical analyses that provide some traction on services for people with ID: both offer a counterpoint to Whiggish tendencies to highlight past abuses and celebrate the present. Gleeson's broad sweep examines how and why institutions were established. While agreeing that some became barbarous, Gleeson considers their benefits as well as their problems, asking what was lost and who was damaged in the process of deinstitutionalisation. His analysis of moments of transformation provides a new perspective on the situation in which we now find ourselves. Toms' analysis of the intellectual shifts that underpinned Tizard's Brooklands studies in the late 1950s also provides an opportunity to construct a broader understanding of ID's past. His paper reveals the mixture of influences and personal commitments that allowed children with ID to be seen in different ways, and consequently afforded new and better possibilities. The next three papers examine aspects of the present. Reinders and Schuengel provide, respectively, perspectives from philosophy and special education about care relationships between staff and people with ID living in residential establishments. Both focus on the importance of staff being fully present in interactions with the person, offering resistance to contemporary ‘commodification’ of care. Reinders argues that professionals who are fully present make a commitment to clients, and that service cultures need to facilitate rather than destroy such commitment, which both emerges out of and generates trust. From a different angle, Schuengel et al. examine the impact of personal history on the degree to which staff can be fully present, or can learn to be so. Their research shows that staff with different relational histories all benefit from sensitive support to develop their relationship with residents, although this works with the grain more easily for people with some types of attachment history and less easily for others. Significantly, such support needs to be provided by mentors who stand outside management and evaluation procedures. Both papers question current quality standards that instrumentalise care relationships. Hall's paper examines the experiences of people with milder forms of disability. Summarising research by a range of geographers including his own, Hall questions the value placed on mainstreaming. He describes research into arts initiatives with groups of people who have ID that provide a safe haven, referring to hitherto taboo terms such as ‘semi-institutional’ in describing them. Such havens allow people with ID to experience insiderness and a sense of belonging, in contrast to their experiences of jobs that generate feelings of ‘abjection’. Hall argues that sheltered projects rather than mainstream experiences provide the strengthened identity and social reinscription that could dismantle deeply-set social structures. The last two authored papers face towards the future. As service-providers start to examine synthesis and formulation (Holland 2009), there is increasing need for conceptual frameworks that determine which ideas can be brought together, which are incommensurate, and how to weight different positions and perspectives. Carlson's exposition of different types of authority provides a frame for considering the claims made by different people. Clegg and Lansdall-Welfare examine one way that a relational rather than an individual perspective could be incorporated into service planning. The final contribution comes from the Counterpoint participants, as they reflected at the end. The session was less a discussion than an opportunity to put on the table any idea that had been elicited by the proceedings. It offers a cadenza rather than a finale, which we hope will prompt responses and reactions from others. Ms Debbie Abrams O.B.E., General Manager, Community Learning Disabilities Directorate, Nottinghamshire Healthcare NHS Trust, Nottingham, UK Professor Christine Bigby, School of Social Work & Social Policy, La Trobe University, Vic., Australia Dr Licia Carlson, Assistant Professor of Philosophy, Philosophy Department, Providence College, Providence, RI, USA Mr David Charnock, Lecturer, School of Nursing, Midwifery & Physiotherapy, University of Nottingham, UK Professor Clair Chilvers, Chair, Nottinghamshire Healthcare NHS Trust, Nottingham, UK Dr Jennifer Clegg, Associate Professor & Honorary Consultant Clinical Psychologist, University of Nottingham/Nottinghamshire Healthcare NHS Trust, Nottingham, UK Dr Stuart Cumella, Senior Lecturer in Developmental Disability Policy, School of Clinical and Experimental Medicine, University of Birmingham, UK Dr Michael Dunn, Senior Researcher in Health and Social Care Ethics, The Ethox Centre, University of Oxford, UK Mr Nick Everett, Lecturer in English and American Studies, School of English, University of Leicester, UK Professor Brendan Gleeson, Professor of Urban Management and Policy, Director – Urban Research Programme, Griffith University, Australia Dr Ed Hall, Lecturer in Human Geography, School of Social and Environmental Sciences, University of Dundee, Scotland, UK Professor Martin Halliwell, Professor of American Studies & Head of the School of English, University of Leicester, UK Professor Tony Holland, Health Foundation Chair in Learning Disabilities, CIDDRG Section of Developmental Psychiatry, University of Cambridge, UK Dr Susan Johnston, Clinical Director National High Secure Learning Disability Service, Nottinghamshire Healthcare NHS Trust, Nottingham, UK Dr Axel Kaehne, Research Fellow, Psychological Medicine, Cardiff University, Wales, UK Dr Richard Lansdall-Welfare, Clinical Director, Community Learning Disability Directorate, Nottinghamshire Healthcare NHS Trust, Nottingham, UK Professor Ann Lewis, Professor of Special Education & Educational Psychology, School of Education, University of Birmingham, UK Professor Elizabeth Murphy, Pro-Vice-Chancellor and Head of the College of Social Science, University of Leicester, UK Professor Greg O'Brien, Professor of Developmental Psychiatry, University of Northumbria & Northgate Hospital, Northumberland, UK Professor Hans Reinders, Professor of Ethics, Department of Theology, Vrije Universiteit, Amsterdam, the Netherlands Professor Justine Schneider, Professor of Mental Health & Social Care, School of Sociology & Social Policy, University of Nottingham, UK Professor Carlo Schuengel, Professor of Special Education, VU University Amsterdam, the Netherlands Professor Michael Seidel, Professor of Psychiatry, V.Bodelschwinghesche Anstalten, Bielefeld, Germany Mr Simon Smith, Executive Director, Nottinghamshire Healthcare NHS Trust, Nottingham, UK Professor P J Standen, Professor of Health Psychology & Learning Disabilities, Head of School of Community Health Sciences, University of Nottingham, UK Dr Jonathan Toms, Research Fellow, Department of History, University of Warwick, UK Ms Katie Turner, PhD Student, School of Psychology, University of Nottingham, UK

Journal of intellectual disability research : JIDR, 2010 · doi:10.1111/j.1365-2788.2009.01244.x