‘Talking about us without us?’. A response to Neil Crowther

In Volume 22 Number 7 of Disability & Society Neil Crowther of the recently formed Equality and Human Rights Commission provided his interpretation of the current situation of disability politics in the UK. Besides acknowledging the pioneering role organisations controlled and run by disabled people had played in the struggle for the eradication of disabling barriers, he suggests that the challenges facing disabled people are increasingly different from those of the early 1990s, and that despite the incorporation of a disability rights agenda into the formal mechanisms of Government many disabled people remain amongst the most economically and socially disadvantaged in Britain. This he ascribes to the disabled people's movement's ‘ideological purity’ and failure to engage in productive partnerships with other disability organisations. Here we argue that these assertions are based on a lack of clarity of meaning and a partial reading of the difficulties encountered by the disabled people's movement as a consequence of its early success and the activities of the agencies he urges the movement to engage with.     

Diversity and inclusion in local governance: An Australian study of seniors' participation

The importance of hearing older people's voices within local governance processes is well recognised; however, the increasing diversity among older people makes this complex. Questions around inclusion and exclusion, representation and representativeness create challenges for the ways in which diverse older people are engaged. This paper uses the results from a qualitative study conducted in Australia to address the key research question: how does diversity impact on older people's perceptions and experiences of barriers to participation in local governance? Results indicate that diversity impacts not simply on what barriers are reported by seniors, but on how those barriers are experienced. Patterns among the barriers reported and their relationship with diversity reflect questions around representation and inclusion. Thus despite broad acceptance of the notion that understanding diversity is integral to inclusion, challenges remain for older people's engagement with local governance processes. A deeper understanding of diversity and how it relates to inclusion are required.     

The Dialectics of Multiple Identities and the Disabled People's Movement

This paper explores the issue of commonality and difference in the disabled people's movement in relation to ethnicity, gender sexuality, age and class. Hitherto, disability academics have either ignored or tagged on the experience of disabled black and minority ethnic people, women, older people, and gay men and lesbians. When they are discussed, they have more often than not been discussed separately - for example, disabled black people's experience has always been discussed separately, disabled women, disabled gay men and lesbians and disabled older women. Hence it is not surprising if 'simultaneous oppression' is perceived to be the unique experience of a minority of disabled people. Here, I suggest that it is, in fact, the experience of a majority of disabled people since the majority is not a homogenous mass of disabled white heterosexual middle-class young men, but individuals from diverse backgrounds with a wide range of identities and experiences, and to accept that their only concern is disability is to fall into the same trap as the general population most of whom only see the impairment and not the person. It is imperative to note, however, that the blame does not lie with the social model of disability, as it is sometimes assumed, for that is merely a conceptual tool. The paper discusses the concept 'simultaneous oppression' as applied to the experience of black women and later disabled black people. It is suggested that this is too simplistic an analysis to capture the day to day experience of those who possess negatively labelled multiple identities. An alternative framework is suggested to link the experience of different groups of disabled people and, hence, offer a common ground for unity in the disabled people's movement.     

From ‘for’ to ‘of’: a typology of Maltese disability organisations

The main aim of this article is to adapt the Typology of Disability Organisations that Oliver devised, and subsequently developed further in 1990, to a different context, in this case the Maltese disability sector. The paper first traces the history of the disabled people’s movement and presents Oliver’s Typology, which makes a clear distinction between organisations for and of disabled persons. The article then highlights the main characteristics of the Maltese disability sector and develops the Typology of the organisations operating within that sector. It shows how it is non-disabled people that are mostly in control of disability organisations, and suggests ways in which there can be a stronger movement towards the development and strengthening of disabled people’s organisations. The article shows how Oliver’s Typology can be used flexibly and adapted to various contexts. It also shows how drawing up a Typology of Disability Organisations can shed light on the environment within which these organisations operate, identifying areas of strength and possible areas for growth.     

Young people,social media and connective action: from organisational maintenance to everyday political talk

Social media is pervasive in the lives of young people, and this paper critically analyses how politically engaged young people integrate social media use into their existing organisations and political communications. This qualitative research project studied how young people from a broad range of existing political and civic groups use social media for sharing information, mobilisation and, increasingly, as a means to redefine political action and political spaces. Twelve in-person focus groups were conducted in Australia, the USA and the UK with matched affinity groups based on university campuses. The groups were of four types: party political group, issue-based group, identity-based group and social group. Our focus group findings suggest that this in-depth approach to understanding young people's political engagement reveals important group-based differences emerging in young people's citizenship norms: between the dutiful allegiance to formal politics and a more personalised, self-actualising preference for online, discursive forms of political engagement and organising. The ways in which political information is broadcast, shared and talked about on social media by engaged young people demonstrate the importance of communicative forms of action for the future of political engagement and connective action.     

Young People as Co‐producers in Policing across England. An Evaluation of the ‘Youth Commission’ on Police and Crime

This paper discusses a recent study on three ‘Youth Commission’ on police and crime projects. Professional viewpoints were interpreted to understand how they valued young people's participation and made sense of their experiences and capabilities. Framed within policing reforms, the ‘Youth Commission’ projects regard young people as co‐producers, who work in partnership with professionals to address police and crime issues. The focus is upon professionals and their relationships with young people for transformative participation and social outcomes. Working in partnerships showed interdependency but identifies further challenges if professionals do not truly value young people's participation.     

Disability and Disaster Recovery

Abstract

This paper examines the connections between disability and disaster from a global perspective. Concepts from the research and policy literature are used to distinguish between individual and social models of disability, and between natural hazards and human disasters. These concepts are then employed to investigate data on the response to disabled people's recovery needs in two recent case studies: the Asian tsunami and Hurricane Katrina. The analysis combines primary, secondary and tertiary sources to explore disability issues in the reconstruction of inclusive communities and the lessons that may be learned about disaster preparedness in poor communities. The conclusions suggest that more attention should be paid to social model approaches, particularly in understanding global links with poverty, and that disabled people's organisations should be resourced as agents of disaster recovery and preparedness.     

Representing the Views of Disabled People in Community Care Planning

The 1990 NHS and Community Care Act requires social services departments in Britain to involve representatives of service users in the preparation of their annual community care plans. This paper gives a critical account of the different ways in which the views of disabled people are sought and represented in community care planning; and of the organisational and practical barriers which disabled people and their organisations are likely to encounter in representing their views to service planners. People with learning disabilities, older disabled people, people with sensory impairments and disabled people from Black and ethnic minority communities are particularly likely to be excluded from current consultation procedures. The paper concludes that present methods of representation place considerable burdens on both individual disabled people and on their organisations. Consequently, disabled people may increasingly question the effectiveness and usefulness of their involvement in community care planning, in the light of the many other issues which are important to them.     

A study of disabled children and child protection in Scotland — A hidden group?

This paper is based on analysis of data collected for a study, commissioned by the Scottish Government, which examined child protection work with disabled children. At a conceptual level, the paper draws on Goffman's frame analysis and on different models of disability. Focus groups were conducted with five Child Protection Committees (40 individuals) and semi-structured interviews with a further 21 practitioners from social work, education, health services, third sector organisations and the police. The findings show that, for various reasons, abuse of disabled children may go undetected. Where it is suspected, effective action does not always follow, for example, where practitioners over-empathise with parents. When child protection work is undertaken, disabled children may remain relatively invisible in terms of participation and professional focus. It is suggested that the ways in which practitioners and managers “frame” disabled children has implications for how abuse is responded to and how well these children are protected. Participants also “framed” disability in different ways, and it is suggested that a social relational model seems particularly applicable. In conclusion, in many respects disabled children experiencing abuse may remain absent from or to some extent hidden within child protection services in Scotland. While some creative work is taking place, considerable changes are required to make child protection services accessible to all disabled children, sensitive to their needs and respectful of their rights.     

Towards an agenda for disability research in Europe: learning from disabled people’s organisations

This paper addresses the challenges of building capacity for collaborative participatory research with disabled people’s organisations in European countries. The paper presents initial findings from the project ‘European Research Agendas for Disability Equality’ (EuRADE), which seeks to build the capacity of civil society organisations to participate in future research collaborations in partnership with academic institutions. The findings draw on survey data identifying the research capacity, needs and priorities of 68 organisations in 25 countries and focuses, in particular, on responses from national or European level representative organisations of disabled people. The findings demonstrate a high degree of motivation and readiness for collaboration in academic research but raise concerns about the readiness of academic institutions to engage disabled people as equal partners within social model and rights‐based approaches. Respondent organisations identified a wide range of research needs that raise challenges for collaborative responses from the academic community. In this way, the findings provide a basis for developing user‐led agendas for European funded research within the emancipatory paradigm, and indentify important opportunities for new international research collaborations between activists and academics.     

Same Difference? Older People's Organisations and Disability Issues

This paper addresses some important areas of commonality in the political interests of older and disabled people. The paper reports findings from survey and interview research with local organisations representing older people, and their engagement with disability issues. We begin by reviewing similarities in the claims and mobilisation of older and disabled people, and by reviewing the groups that participated in the study. The main part of the paper identifies substantive policy issues that were perceived as important to older people. Here, there are considerable areas of overlap with the claims of disabled people's organisations (for example, in relation to information, independent living, accessible housing, transport, social support, and incomes). We review these commonalities and offer some thoughts on the potential for political alliance between the two movements. The paper concludes that, while there are considerable areas of common ground, there remain cultural barriers to the mobilisation of such alliances.     

Disabled People, Service Users, User Involvement and Representation

The issue of representation and representativeness has become central in debates about user involvement, disabled people and users of social care services. This article examines the emphasis of service agencies on the 'unrepresentativeness' of disabled people and service users; looks at how this is experienced by the latter and considers why the issue has gained such importance. It examines the different meanings attached to representation by recipients and providers of services. As well as looking at how the issue of representativeness is used to devalue, exclude and disempower disabled people and service users, the article explores its relation with the competing participatory and representative models and practices of democracy employed by disabled people and service providers.     

International guidelines and the inclusion of disabled people. The Ugandan story

Uganda has made much progress towards including disabled people in its mainstream development, particularly in the political agenda. The exact process by which this has been achieved and the relationship between this and international guidelines and legislation are not known. This study undertakes to examine this from two specific perspectives: (1) How do international documents relevant to disabled people relate to national legislation in Uganda? (2) What can this comparison, together with the perceptions of stakeholders, tell us about how the legislation and services could improve? International legislation and Ugandan legislation is reviewed and compared. Data from 5 semi‐structured key informant interviews and 6 focus group discussions involving a total of 38 people are collected and analysed. The themes arising from the data are related to the documents, legislation, policies and other relevant literature. The results examine the barriers to service provision; the role of change; the importance of representation; policy and legislation issues; and the effects of devolution. Five specific findings relate to how legislation and services can improve: more resources to increase access for disabled people; strong leadership and collaboration between Disabled People’s Organisations (DPOs) funding bodies and governments; awareness raising and training; representation from all impairment groups; and raising the profile of disabled people through further legislation.     

Disabilities and sexual expression: A review of the literature

Since the late 1980s and early 1990s, scholars have sought to advance a more nuanced and robust understanding of the sexual lives of disabled people. In doing so, these scholars have identified some of the barriers to sexual expression that disabled people face as well as some of the positive and pleasurable aspects of disabled people's sexual lives. This article reviews research regarding the sexual expression and activity of disabled people as well as some of the challenges to sexual expression that people with disabilities experience. Persons with disabilities—whether they are acquired, congenital, intellectual, physical, and/or sensorial impairments—continue to encounter alienation, stigmatization, and discrimination, particularly in terms of their sexuality. However, I argue that if proper laws, policies, and adequate supports are in place, people with disabilities can further challenge and push past these barriers to engage in a wide array of sexual and erotic acts. Furthermore, although the amount of disability‐sexuality‐related research has increased over past decades, I argue that many intersections of disability and sexuality remain under‐studied and that further research in this field is necessary.     

Disability Discourses for Online Identities

Beneficial effects of the online medium have been reported for disabled people in terms of providing a 'levelling ground' where they can be treated on their merits as a person, rather than as a disabled person. If this occurs because impairment is invisible online, how then are disabled people managing disability disclosure within this social context? This paper addresses this issue discursively. Participants were recruited from various disability organisations in New Zealand and were invited to take part in an online interview. A 'choice to disclose' repertoire was identified and was organised around three key resources: relevance, anonymity and normality. Embedded within each resource is the idea that the presence or absence of impairment is constructed as a feature controlled by the individual. Positioning identity within a subjectivity removed from impairment was made possible through these resources and was valued by participants. Political implications associated with the absence of impairment are discussed.     

Examining concepts of power and agency in research with young people

Concepts of power and agency have become increasingly prominent in the youth studies literatures and related research. A focus of the research to date has been an examination of how a better understanding of young people's lived experiences can reveal possibilities for young people's agency to emerge. Despite increased interest in the term agency, much less has been said about how the concept is defined and recognized in research with young people, including what the concept may entail but crucially, how the term is linked to and underpinned by the related concept of power. This paper seeks to contribute to our understanding of power and agency as utilized in research with young people. The discussion that follows identifies the possible ways in which different theoretical positions shape our understanding of how power and agency are investigated and how these understandings inform the ways we interpret young people's perspectives and actions as holding potential for ‘agency’. Drawing on recent empirical examples, we consider how varying interpretations of power and/or agency shape not only the ways in which young people's agentic experiences are theorized (and the related ontological and epistemological assumptions these positions imply) but also the presumed effects of that agency.     

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.     

Experiencing Stigma and Exclusion: The Influence of Neoliberal Perspectives,Practices, and Policies on Living with Chronic Illness and Disability

Neoliberal perspectives, policies, and practices increasingly affect chronically ill and disabled people's embodied experiences of stigma and exclusion. Neoliberalism emphasizes individual responsibility and self-sufficiency, a limited social safety net, and narrow governmental accountability. Examining pivotal experiences of chronically ill people shows how neoliberalism can frame their alternatives, interactions, and actions. This examination prompts reconsidering Goffman's concept of stigma to include how larger social policies and practices affect experiencing stigma and exclusion and, also, illuminates temporal features of receiving a diagnosis, disclosing illness, and dealing with disabilities and unpredictable bodies. The analysis derives from an ethnographic story and published and unpublished personal accounts from first-hand and library research over the course of my career.     

How context influences the ideologies and strategies of disabled people’s organisations: a case study from Cambodia

Abstract

Studies of disability movements have centred on exploring how movements have emerged and how their strategies have been devised to effectively advocate for the rights of the people with disabilities they represent. However, little attention has been focused on examining their organisational contexts and how they shape ideologies and choice of strategies, which have implications for the success of their advocacy endeavours. This article seeks to contribute to knowledge in this area by studying the case of a disabled people’s organisation in Cambodia. The resource dependency of disabled people’s organisations on international development partners results in their ideologies and strategies being driven by the latter. This has not only fragmented their resources, but also made their endeavours less relevant to the needs of people with disabilities. This may act to prevent such organisations from building a common ground for collective action, and from effectively pressing for social change.