Normalisation and 'Normal' Ageing: the social construction of dependency among older people with learning difficulties

This paper discusses the new phenomenon of the survival into old age of the increasing numbers of people with learning difficulties. This raises both theoretical and practical policy issues. In the UK health and social services for older people and for people with learning difficulties have followed quite different paths. One has been based on a limited, age discriminatory view of 'normal' ageing; the other has focused on a potentially liberating concept of normalisation. This distinction is being challenged by the advent of older people with learning difficulties, which is raising questions such as, what is the meaning of normalisation in older age? We focus on this key question, illustrating the different principles behind service provision for these two groups and argue that the concept of normalisation is flawed when applied to older people. The alternative of social integration is proposed as the basis for organising health and social services for both older people and those with learning difficulties.     

Insiders or Outsiders: normalisation and women with learning difficulties

This paper examines changing attitudes towards women with learning difficulties within the culture of normalisation. It builds on earlier critiques of the normalisation principle and, whilst welcoming these, argues the case for looking at women in particular. The authors review literature on sex education for people with learning difficulties to illustrate the ways in which gender has been ignored and women's sexuality has been treated. Writing from their perspective as lesbian feminists, they explore the oppressive nature of sex education in a culture that places a premium on normality. The paper ends with a discussion of alternative ways for women with learning difficulties to gain a sense of identity and belonging.     

Professional/client Relationships: Creating a 'Working Alliance' with People with Learning Difficulties

People labelled as mentally handicapped are perhaps the last amongst the various client groups to be considered as autonomous individuals with a say in their own destinies. There is growing pressure on professionals in all fields to relinquish power and control and recognise the inherent problems of attitudes and practices which promote rather than reduce dependency in clients. Even where client groups are recognised as independent and effective members of society, there are strong resistances to this changing professional role. Where severe learning difficulties are involved, the resistances do not arise just from clinging to older, more comfortable attitudes and practices, but also from a genuine uncertainty about how to proceed. The principle of normalisation does not seem to translate easily into new modes of professional/client interaction.

This paper sets professional/client relationships in their immediate historical context and considers how interpretations of normalisation seem to confirm rather than conflict with established professional assumptions. Some approaches are suggested which may help in structuring and supporting a process of change from dependency-inducing relationships to a 'working alliance'.     

Hearts and Minds: Social Role Valorization, UK academia and services for people with a learning disability

The relative roles of academic thinking and ideas, the particular set of ideas called normalisation, and other influences on services for people with learning disabilities are discussed. The paper argues that in the sixties and seventies the relatively small number of academics in the field dominated the thinking about services, but not services themselves. The development of the teaching of normalisation in the eighties is argued to have had a greater effect on services, though not on academic thinking, whose influence is, in any case, seen to be in decline. Confusion then arises as normalisation is reconceptualised as Social Role Valorization, both from the way this is taught in the UK and from academia's difficulty in coming to grips with which set of ideas are the ones that have influenced services. There is therefore little recognition, either in academia or the service world, of further refinements of SRV theory in the nineties.     

Normalisation, Emancipatory Research and Inclusive Research in Learning Disability

In this article I set out to trace the influence of two major sets of ideas: normalisation/srv, and the social model of disability on inclusive research in learning disability. The argument is that normalisation set the agenda for learning disability research for two or more decades. Inclusive researchers continue to apply normalisation thinking to work with people with learning difficulties, particularly in assuming the role of advocate - offering people the opportunity to take on valued social roles and assuming responsibility for promoting positive images. Latterly, a number of researchers have tried to rise to the challenges posed by emancipatory research, particularly in attempting to find ways to put people with learning difficulties in control. This illustrates the influence of thinking emanating from disability studies. However, the paper shows that whilst some ideas from emancipatory research have been applied in learning disability, there are debates in the disability literature that have not been addressed in learning disability research to date. The result is that inclusive research in learning disability is in danger of being marginalised, both in the context of disability studies and in the context of the broad sweep of learning disability research.     

A Comparative Approach to Evaluating Individual Planning for People with Learning Disabilities: challenging the assumptions

Individual planning in services for people with learning disabilities is used on the assumption that it encourages service users across a range of abilities to make important decisions about their lives. Although recent studies have questioned the value and effectiveness of such processes, the principles underlying the practice of individual planning are rarely challenged. This paper considers important aspects of individual planning in London, comparing a system based on the principles of normalisation with a situation-specific, family-orientated system operating in Milan, Italy. Key factors such as the role of professionals and the involvement of service users are considered with the aims of the process. The intention of the paper is to stimulate debate in an area of practice by questioning its assumptions.     

Vulnerability in custody: perceptions and practices of police officers and criminal justice professionals in meeting the communication needs of offenders with learning disabilities and learning difficulties

Information provision and communication within the Criminal Justice System can be highly problematic for young people and adults with learning disabilities and difficulties. Paper-based communication is common, and is mandated for the provision of rights and entitlements in custody, but such communication can be poorly understood, potentially leading to miscarriages of justice. This article uses the piloting of a more accessible version of the rights and entitlements notice in custody to explore the communication practices with vulnerable detained persons from the perspectives of professionals within the Criminal Justice System. As a legally mandated text in a context heavily imbued with organisational power, the rights and entitlements notice in custody has sociological significance as a lens through which organisational practices, and understandings, can be examined. The stressful, fast-paced and transitional context of custody shapes communication and interaction in ways that are challenging for the detained person and also the professionals who support them.     

Paradoxes, locations and the need for social coherence: a qualitative study of living with a learning difficulty

Policy rhetoric over recent decades has promoted social inclusion of the more vulnerable sectors of society, such as people with learning difficulties. This study aimed to describe the experiences of people who live with learning difficulties in order to inform local service development. Thirty-five people with a learning difficulty and/or a family member were interviewed. A model of social coherence was developed that moves beyond the self-limiting debates about social inclusion and exclusion. It is underpinned by a sense of location for the person with a disability in relation to services and carers, family and community, dependency and risk, temporality and space, events, control and society. Key recommendations are for services to know the individual and his/her family; to be responsive to individual needs; to enhance the capacity of families and communities to support people with difficulty in learning; and to help these people to feel more valued.     

Good Intentions - Unpredictable Consequences

A commendable degree of success has been achieved in relocating people with learning disabilities from residential institutions into ordinary community settings. Nevertheless, a challenging task remains if people with all levels of learning disabilities are to be enabled to become meaningfully involved in ordinary community activities. The author argues that a structured day service has a vital role to play in this process, but that, unless the underlying problems that have continued to frustrate the development of a coherent national day care strategy are objectively reappraised and addressed, the true potential of the 'care in the community' policy will not only never be realised, but could actually become imperilled. This paper offers evidence to support the view that current policy trends are based on normalisation theories that, although sound and commendable in principle, have been misunderstood and misused. Consequently, the premises upon which these policy trends are based are fundamentally flawed.     

Life History or 'Case' History: the objectification of people with learning difficulties through the tyranny of professional discourses

Case histories of people with learning difficulties tend to privilege information that is useful to professionals, such as IQ and medical diagnosis. Such information allows professionals to slot people with learning difficulties into categories which inform 'treatment' and aid prognosis. Case records, as they are currently constructed, appear to further silence an already oppressed group of people, and to objectify, pathologise and label them. The subjects of such case records do not appear to be treated as stakeholders in the case recording process: their voices are not represented in such writings. Case records do not appear to contain information about the lived experience of people with learning difficulties. Ignorance of the unique histories of people with learning difficulties is dehumanising and allows professionals to psychologically distance themselves. Once humanity has disappeared, it is possible to treat people as 'objects' that can be controlled through 'respected' professional theories and their discursive practices.     

The Paradox of the Quality of Life of Adults with Learning Difficulties

This paper is based on an empirical survey conducted in 1995 in Hungary. Data came from a stratified random sample of about 1300 adults with learning difficulties from all over the country. The author combines qualitative and quantitative methods in analysing the quality of life of people with learning difficulties and takes into consideration that their quality of life is as much determined by sociological factors as by the biologically and educationally understood level of difficulties. The paper shows that success in education and in the labour market does not equate to successful social integration. The quality of life of adults with learning difficulties is sometimes better in social circumstances which are less favourable for high achievement in education and in the labour market. Though the people from more privileged backgrounds may seem to lead a more active and social everyday life than those with working class origins they are still considerably less integrated in their social environments.     

Support and Access in Sports and Leisure Provision

This paper will look at different ways of enabling people with learning difficulties to engage in leisure opportunities: the Support Model and the Access Model. These models will be put in their social context and then critiqued.

The support model will be be contextualised in the theory of normalisation, access in disability theory. The support worker role will be shown to be useful in motivating people with learning difficlties into new activities, as well as having a protecting element, and unwittingly, disguise the level of discrimination people with learning difficulties are subject to.

The access worker role will be shown to have strengths in understanding discrimi nation. With this analysis, it has the potential to dismantle disabling practices. However, the needs of people with learning difficulties have ramifications for disability theory. In practice, that means that ideas of self-advocacy need to be taken on board.

Through interviews with sports personnel, social workers and people with learning difficulties, the implications of creating fully comprehensive access will be examined. I will conclude that both effective support and comprehensive access must be in place before people with learning difficulties are able to make a meaningful choice as to how they are enabled to participate in sports. It is only at that point of choice that the two models become complementary rather than competing discourses of provision.     

What's in a Name? The Implications of Diagnosis for People with Learning Difficulties and their Family Carers

Diagnosis plays a significant role in the shaping of individual identities and the quality of life for people with learning difficulties and their family carers. Diagnostic labels are constitutive of peoples' lives, in that they bring forth pathology, create problemsaturated stories and construct careers as patients and cases. Disabled identities of people with learning difficulties remain largely 'embodied' and within the definitional control of professionals. Whilst the acquisition of a learning difficulty label can open doors to resources, it can also lead to disrespectful and dehumanising treatment, and the severe restriction of opportunities. This paper argues that a social constructionist perspective can offer a way of thinking about diagnosis that challenges the so called 'facts' and 'truths' that underpin and support it. Working in partnership with people with learning difficulties in relation to diagnosis requires professionals to relinquish power by resisting the 'temptations of certainty' associated with diagnostic practices.     

Whose ‘Ordinary Life’ Is It Anyway?

This paper offers a feminist critique of current community care policy and of the normalisation ideology which underpins it. Drawing on experience in services for people with learning difficulties and people who use mental health services, the authors draw a series of parallels between 'clients' and women in our society. They discuss the mechanisms whereby groups of people are accorded second class status and the ways in which such oppression is experienced. Strategies for change are discussed with reference to feminist scholarship and the development of the women's movement. The prevailing philosophy of normalisation, which is both apolitical and highly individualistic, is challenged to take more account of collective and communal ways forward and to acknowledge the interdependence of people who need care and their carers. Despite the rhetoric of community care, the work of carers (most of whom are women) is undervalued and unsupported. Mainstream values such as competitiveness and self-reliance are incompatible with the integration of people with disabilities and a theoretical framework which confronts such conflicts of interest is required.     

Clinicians' Experiences of a Podcast Series on Implementing a Manualized Treatment

The purpose of this qualitative study was to explore clinicians' experiences of using Podcasts to assist with implementing an evidence-based practice (EBP). Twelve clinicians, including eight student interns, at a human service organization were interviewed about their perceptions of using Podcasts about implementing an EBP called Grief and Trauma Intervention (GTI) for Children. Major themes included that the Podcasts were helpful, liked the short length, fit their learning styles, useful teaching tool, wanted more clinical content and more engaging material, and that administrative support was important for use. Technological difficulties were a major barrier to use. There were some differences in experiences of the Podcasts between post-masters professionals and interns. Podcasts may be a useful technology to help clinicians implement EBPs, and future research on Podcast use is warranted.     

Concepts of access for people with learning difficulties: towards a shared understanding

This article explores both the process and outcomes of a seminar series on the concept of access for people with learning difficulties. The seminar topics chosen to foster dialogue across professional and disciplinary boundaries included access to information, education, employment, the law, health, leisure, community, past histories and future plans. The seminars brought together people with learning difficulties and their support workers, researchers and professionals, to examine the expert knowledge of people with learning difficulties in negotiating access, the role of practitioners in mediating access and the contribution of research to understanding access. The aim was to develop a rich, shared understanding of the concept of access for people with learning difficulties. However, a huge amount of ‘access work’ had to be done to achieve this. The article discusses that access work and proposes a multidimensional model of access and ways of promoting it.     

Community Care: Relationships and Control

Analysis of the relationships available to people with learning difficulties has received much attention in recent literature and has also become the focus of work undertaken by service personnel. This paper presents an analysis of networks of people with a learning difficulty in Wales and illustrates the paucity of close relationships in people's lives. It is argued that community care involves the removal of custodial forms of social control and their replacement by mechanisms which place greater emphasis on relationships as a form of imposing sanctions on individuals. In an attempt to assist the move to improve networks the authors argue the need to develop a theoretical understanding of the social processes by which individuals are excluded and as a result inform the means by which individuals may be included.     

Disabled Children,Parents and Professionals: Partnership on whose terms?

Taking a parental perspective, this paper explores the experience of partnership between parents of disabled children with learning difficulties and educational professionals. It is argued that until policy, legislation and practice moves from its present perspective of viewing disability as the failure of the individual to that of a perspective embracing equality of value for all, relationships between parents and professionals will be fraught with difficulties. Furthermore, it is argued that until disabled children are centrally and positively placed within the relationship between parents and professionals, the existing prejudice and oppression experienced by disabled children will dominate the relationship.     

Subversive political praxis: supporting choice, power and control for people with learning difficulties

This paper is drawn from research conducted with gay and bisexual men with learning difficulties, a project that included participants' various struggles to self-identify within these alternative sexualities. Significant parts of this identity work were mitigated by participation in what is referred to here as 'politically radical support groups'. Three facilitators of these groups, professionals in the areas of sex education, were interviewed and a common itinerary was uncovered, namely a subversive and political praxis. At its heart, such praxis argues that educational endeavours for people with learning difficulties must not only account for disabling practices, but more importantly, maximally prioritise the mitigation of such prejudice within educational activities. Furthermore, it is argued that political praxis is not merely theoretical; six practical strategies are offered. In these ways, caregivers are offered concrete approaches to (genuinely) support the choice, power and control for people with learning difficulties.