Locating Self-advocacy in Models of Disability: understanding disability in the support of self-advocates with learning difficulties

Recent appraisals of self-advocacy groups of people with learning difficulties have tended to focus on the constitutional and structural facets of groups whilst failing to explicitly engage with disability theory. This paper explores different understandings of disability and examines how these are or can be implicated in the self-advocacy movement. First, the effects of the dominant individual or personal tragedy model of disability on self-advocacy will be examined with reference to the advisor's position. It is argued that if advisors hold such understandings of disability then they threaten to stifle the selfdetermination of self-advocates. Secondly, self-advocacy framed in terms of the alternative social model of disability will be presented. It is argued with reference to the advisor's role that self-advocacy is best understood and practised when it is grounded in this persuasion. Here, the views of self-advocates themselves are called upon. Finally, understanding self-advocacy in terms of the social model is taken further. It is suggested that self-advocates themselves directly challenge dominant understandings of disability in general and can contribute to the formulation of a social theory of disability.     

Towards an Affirmation Model of Disability

In this paper we argue that a new model of disability is emerging within the literature by disabled people and within disability culture, expressed most clearly by the Disability Arts Movement. For the purposes of discussion we call it the affirmative model. It is essentially a non-tragic view of disability and impairment which encompasses positive social identities, both individual and collective, for disabled people grounded in the benefits of lifestyle and life experience of being impaired and disabled. This view has arisen in direct opposition to the dominant personal tragedy model of disability and impairment, and builds on the liberatory imperative of the social model. Critiques of the latter have been consistently expressed as, or interpreted as, re-affirmations of personal tragedy, particularly in relation to impairment. In this analysis the affirmation model addresses the limitations of the social model through the realisation of positive identity encompassing impairment, as well as disability.     

Disability Identity Formation and Affirmation: The Experiences of Persons with Severe Mental Illness

This article examines the pervasive nature and extent of the debilitating sense of shame associated with disability. It then explores the emergence of disability identity, pride, and culture to challenge such shame—illustrated in personal narrative accounts of the individual and collective journeys of people coping with severe mental illness.     

Increasing Opportunities for Co-production and Personalisation Through Social Work Student Placements in Disabled People's Organisations

Social work student practice placements in disabled people's organisations offer several advantages for individual students, their peers and tutors, and DPOs themselves, who can offer placements for students in supporting service users to give their views as well as delivering social care services. In this context professional skills and anti-discriminatory practice are fostered through learning directly from disabled people as experts without the constraints of local authority policies.

This paper draws on my experiences of such student placements at Wiltshire and Swindon Users' Network over a 15-year period, 1993–2008, in collaboration with different universities. The social work student on placement here experiences an alternative organisational culture which recognises service users' expertise over professionals. The student learns to value collective peer support and working with activists who view their experience through the framework of the social model of disability. This facilitates a two-way exchange as the student learns about user-led practice and the disabled activists appreciate the skills the student brings.

The advent of policies of personalisation, the Big Society and the decreased role of local authorities is challenging the traditional model of adult care social work within local authorities. The placement of social workers in local centres for independent living, in order to provide intensive one-to-one support in support planning for those in complex situations, is only likely to increase in future. This can be seen as a positive alternative which enables professionals to rediscover their professional values and practice and extends the opportunity for placements beyond DPOs concerned with user involvement only.     

Personalisation as vision and toolkit. A case study

With the objective to eradicate disability related discrimination and promote choice, control, independence and inclusion for all individuals, the personalisation agenda paved the way for a transformation of social care and disability services in the UK. This paper explores personalisation both as a vision of care and support services and as a toolkit promoted by government policies in order to allow for such vision to translate into practice – the use of direct payments and personal budgets being an example. A qualitative case study analysis has been conducted in the context of care services for disabled young people and by means of in-depth interviews with professionals, parents and the young people themselves. Such analysis reconstructs the implementation of personalisation showing how the toolkit offered by government policies has been used and interpreted differently by the different actors in the field and how this has brought to a wide range of opportunities but also risks. What seems to emerge from the study is that the vision of personalisation risks being hampered by its toolkit and that alternatives might be needed in order to safeguard the potential of personalisation as a vision.     

Researching Disability Politics, Or, Some Problems with the Social Model in Practice

This article arises from a research project involving the disabled members' group in UNISON, and problematises the social model which explicitly undergirds the discourses and practices of this group. In abstract terms, there are dangers that the social model can be interpreted in a way which privileges some impaired identities over others, sanctions a separatist ghetto which cannot reach out to other groups of disabled and disadvantaged people, and weaves a tangled web around researchers who adhere to the emancipatory paradigm. In concrete terms, these dangers are explored with reference to the stories of impaired people who believe that they are excluded from the disabled members' group, the predicaments of ex-disabled and differently-disabled people in relation to the movement, and the culture of suspicion surrounding academics, particularly the 'non-disabled' researcher as would-be ally. It is argued that, whilst such identities and issues might appear to be 'marginal' ones in the sense of occurring at the boundary of disabled communities, disability politics and disability studies, they should not be 'marginalised' by disabled activists and academics, and indeed that they pose challenges to our collective identities, social movements, theoretical models and research paradigms which need to be addressed.     

Who am I? Concepts of disability and their implications for people with learning difficulties

The relationship between concepts of disability, group membership and self-concept was examined. It was argued that people with learning difficulties have been categorised, by non-disabled people, as 'belonging' to a devalued social group with a rigid boundary based on IQ level. Findings from studies of self-concept have shown little evidence of a sense of belonging. It was suggested that people with learning difficulties may prefer not to identify with this social group because of the negative effect it may have on their self-esteem. The analysis based on intergroup and social identity theories proposed that people with learning difficulties may be encouraged in creating a positive self-concept by abandoning the IQ criterion for social categorisation; softening the boundaries between disabled and non-disabled people; and adopting collective rather than individual strategies for social change.     

Disability Studies: a historical materialist view

This paper presents an historical materialist view of recent accounts of disability in Western societies. This view is presented in two main parts: first, as an in-depth appraisal of the field of disability studies, and secondly, as an outline for an alternative, historical materialist account of disablement. The critical assessment of disability studies finds that recent accounts of disability are in the main seriously deficient in terms of both epistemology and historiography (though some important exceptions are identified). In particular, four specific areas of theoretical weakness are identified: theoretical superficiality, idealism, the fixation with normality, and an unwillingness to consider history seriously. It is argued that these deficiencies have prevented the field of disability studies from realising its potential to challenge the structures which oppress impaired people. From this critical epistemological perspective, an outline is made of an alternative, materialist account of disability, stressing both theoretical and political agendas.     

Disabled people,choices and collective organisation: examining the potential of cooperatives in future social support

Major shifts in funding, demography, personal expectations and the rise of a global disabled people’s movement require new and creative solutions to the choices and rights agenda into the twenty-first century. Direct payments and the individual employment of personal assistants is one clear and recognised path to independent living. However, there have been some reservations about the nature, process and impact of the broader personalisation agenda more generally within which direct payments and personal budgets are located. Some commentators point to the loss of the collective impulse in personalised approaches – ideas that were central to the development of the independent living movement and its founding principles. Some countries have seen the rise of collective responses to direct payment developments. This is explicable in terms of a suspicion of individualist underpinnings of personalisation coupled with a collective vision of social life. This article is based on an exploratory study of collective approaches in the field of direct payments where choice and social solidarity are being combined. Drawing on developments in Sweden, England and Wales, the article aims to inform possible future debates about direct payments and cooperative approaches and argues that greater user-control is not inimical to enhanced collective action.     

The Holocaust: Commemorated but not remembered? Post-colonial and post-traumatic perspectives on the reception of the Holocaust memory discourse in Poland

The argument focuses on the reception of the globalized narrative of the Holocaust in the regional memories of East-Central Europe, in particular Poland. It is argued that this narrative has not been successfully integrated into the regional memory, partly because of the narrative's own deficiencies and partly due to the specific nature of the way in which regional memories have been produced. Instead, it has contributed to the split of collective and social memories in the region as well as to further fragmentation of each of these two kinds of memory. In result we may say that in post-communist Poland the Holocaust has been commemorated on the level of official institutions, rituals of memory, and elitist discourses, but not necessarily remembered on the level of social memory. It is claimed that to understand this phenomenon we should put the remembrance and commemoration of the Holocaust in the context of the post-communist transformation, in which the memory of the Holocaust has been constructed rather than retrieved in the process of re-composition of identities that faced existential insecurity. The non-Jewish Poles, who in the 1990s experienced the structural trauma of transformation, turned to the past not to learn the truth but to strengthen the group's sense of continuity in time. In this process many of them perceived the cosmopolitan Holocaust narrative as an instrument of the economic/cultural colonization of Eastern Europe in which the historical suffering of the non-Jewish East Europeans is not properly recognized. Thus the elitist efforts to reconnect with the European discourse and to critically examine one's own identity has clashed with the mainstream's politics of mnemonic security as part of the strategy of collective immortalization that contributed to the development of antagonistic memories and deepened social cleavage.     

Toward a Holistic View of Health and Health Promotion in Social Work with People with Disabilities

Abstract

The individual medically oriented model of disability suggests that people with disabilities seldom achieve health and wellness because of their impairments and disabilities. This paper provides an alternative to the tendency in social work to focus on the medicalization of disability without a due consideration of the social context. It draws insights from the social model that asserts disability is a form of social restriction encountered by people with disabilities and that social barriers of disability must be removed through collective action. Also, this model posits that people with disabilities can be healthy if the barriers preventing good health are removed. However, medical aspects of a person with a disability should not be forsaken entirely. Therefore, this article proposes a holistic view that converges insights of the individual and social models toward a better understanding of health issues for people with disabilities. It shows the implications for social work that follow from the convergence.     

Narratives of Leisure: recreating the self

Utilising insights from narrative theory this paper explores the role of narrative in the everyday leisure experiences of people with a mild intellectual disability. Drawing on our experiences with an Australian leisure service Live it UP! we develop the connection between leisure and storytelling in order to open up an innovative approach to working with individuals. The stories of people's capabilities that we draw on run counter to a dominant cultural story of lack associated with disability. Through a post-structuralist analysis we argue that narratives of leisure are a powerful social medium with the potential to produce change in an individual's life and immediate social relationships. Such an understanding is crucial for the development of alternative leisure support services which identify the person's needs, challenging the social positioning of people with an intellectual disability.     

Rhythmanalysis as a tool in social analysis on ethnicity in Hong Kong

This article applies Henri Lefebvre’s concept of rhythmanalysis to an exploration of ethnicity in Hong Kong. It argues that rhythmanalysis has tended to be used in social geography, architectural research, and cultural studies and has been overlooked as a methodological tool in regard to ethnicity. An historic narrative of ethnic diversity in Hong Kong is contrasted with contemporary transformations. It is argued that rhythmanalysis presents an alternative perspective that can deepen knowledge about enduring social patterns that serve to contextualise ethnicity and ethnic relations in a given space. In conclusion, it is argued that there is a need for greater recognition of ethnic diversity in Hong Kong as a means to assert a more confident and secure local identity.     

Simulation Exercises in Disability Awareness Training: A Critique

This paper takes a critical look at simulation exercises. Little evidence exists that these exercises have a positive effect on either attitudes or behaviour but, despite this, they are used extensively in disability awareness training, both for children and adults. It is argued in this paper that by individualising and medicalising disability, and by focusing excessively on problems and difficulties, simulation exercises provide false and misleading information, and inculcate negative, rather than positive, attitudes towards disabled people. It is suggested that simulation exercises fail to simulate impairment correctly, and address neither the coping strategies and skills disabled people develop in living with impairment, nor the cumulative social and psychological effect of encountering social and physical barriers over a lifetime. Rather than using simulation as a means of attempting to understand the experience of disability, the paper concludes by advocating the use of disability equality training, which is devised and run by disabled people themselves.     

精神残疾群体的社会保障需求与供给:现状、问题与发展建议

精神残疾人多生活困难,构成社会最为弱势的群体。本文采用实地研究与文献研究的方法,对精神残疾人的社会保障需求与供给进行专门考察。研究发现,精神残疾群体的主要需求包括治疗、基本生活支持、康复、长期照护与监管以及社会参与。对此,我国政府已通过多项社会保障制度安排予以回应,基本满足了精神残疾人的基本生活与治疗需求,但还存在社区康复服务匮乏、替代性照护服务供给不足、就学、就业难等问题。基于以上发现,本文认为精神残疾人的基本生存权虽得到较好保障,但是对其发展权和参与权依然关注不足。原因在于当前精神残疾人社会保障存在三个不平衡:经济保障与服务保障发展的不平衡,医疗服务与社会服务发展的不平衡,以及卫健、民政、残联不同部门能力与投入的不平衡。针对这些问题,笔者对未来政策的完善提出了参考建议。     

Disabling masculinity: the isolation of a captive audience

In this article, I propose that disabled people tend to engage with and interpret images of people with impairments in a variety of ways that have some degree of correspondence to their structural contexts and their differential access to discursive resources. Contending that gender concerns play a crucial role in the interpretative performances of both disabled and non-disabled participants, it is argued that soap operas are an alienating experience for men in general. I propose that the placement of impairment and disability narratives within the soap opera's structure, as a specific genre, is a particularly demeaning experience for disabled men. Finally, I raise some questions about agency and resistance in such viewing practices, making specific reference to the experiences of disabled men.     

The Collective Turkish Home in Vienna: Aesthetic Narratives of Migration and Belonging

ABSTRACT

This article explores how Turkish people in Vienna create a collective sense of belonging and position themselves in a complex web of diasporic relations, through the materiality and aesthetics of their homes. It aims to show how the efforts of displaced people to construct a belonging to the new place of dwelling are intertwined with the aesthetic and material practices of making homes. Based on ethnographic research, it will be argued that a particular “Turkish home” is collectively created through shared aesthetic practices and discourses and serves as a material and social medium both for imagining and building collectivities and for constructing and expressing ambiguities, conflicts, multiplicities and contests, played out in the aesthetics of the everyday. Challenging the common view that homes in diasporic or migratory resettlements reflect past lives and locations or a mixture of two cultures and two sets of different objects associated with them, it will be argued that Turkish homes in Vienna are made through a new and particular aesthetic, which serves to produce and reproduce a communal Turkish narrative of migration to and dwelling in Vienna.     

‘A mockery of equality’: an exploratory investigation into disabled activists’ views of the Paralympic Games

This article offers an exploratory analysis of the opinions of disabled activists towards the Paralympic Games. With the use of a qualitative online survey, the work focuses on the perceptions of disabled individuals (n = 32) who are not Paralympic athletes but are affiliated to the disability rights group, the United Kingdom Disabled People’s Council. Working on the premise that the views of disabled activists have been excluded from Paralympic sports discourse to date, the results illustrate a nuanced yet negative view of the Games to contrast with an existing, yet overly positive, academic narrative. Participants were particularly cynical of the portrayal and production of the Games and its Paralympic athletes as they perceived that the wider population of disabled people is misrepresented. The overwhelming perception in this preliminary analysis suggests that the Paralympic Games can be counterproductive to disability rights beyond sport.     

Family ties in genes and stories: the importance of value and recognition in the narratives people tell of family

Diagnosis in paediatric genetics involves a combination of technologies able to display variation in DNA and clinical discussions with families that concentrate on retrieving family histories. This paper explores the significance of the family tales that genetics brings to the fore. Through discussion of an ESRC‐funded ethnographic study of families referred to a paediatric genetic service, the paper explores how genetics and family history intersect in ‘relations of exchange’ (Latimer, 2013). It draws from sociological work on family that emphasizes the importance of narrative to the formation and maintenance of family ties and the importance of broader social contexts to the kinds of stories that can be told and recognized by others. The paper emphasizes the significance of claims to respectability and value to the narratives people provide of family ties; particularly in contexts where such ties, in the past or the present, are thought of as ‘troubling’. Making reference to research by Skeggs and Loveday (2012), it is argued that an important narrative that is drawn upon, in order to claim respectability, is that of being a good parent who protects their children from socially ‘risky relations’ so that a positive future as a ‘subject of value’ may be possible.