The Representation of Disabled People: A Hampshire Centre for Independent Living Discussion Paper

This paper addresses the general subject of the representation of disabled people. The purpose is to show why disabled people need to speak for themselves, how they can work with other organisations, and how disabled people's organisations are, and can remain, truly representative. The paper discusses: (1) the representation of disabled people; (2) how do disability groups relate to able-bodied organisations, policy-makers, etc?; and (3) how can disabled people's groups remain truly representative?     

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.     

Accessibility to micro-finance services by people with disabilities in Bushenyi District,Uganda

The Poverty Reduction Strategy of the Ugandan Government identified provision of microfinance as one of its interventions. Despite the known connection between poverty and people with disabilities, it remains unclear to what extent this intervention includes or accommodates them. This study seeks to gain a better understanding of how people with physical and sensory disabilities access existing microfinance services in the Bushenyi District of Uganda. Qualitative and quantitative methodologies are used. The findings suggest that people with disabilities are not necessarily denied access to microfinance if they meet the desired requirements. These relate to adequate savings or collateral and perceived trustworthiness. These are seen to be key determinants of success and can be linked to impaired functioning relating to limited mobility, distance, poorer access to information and disabled people’s own negative attitudes. Increasing access and utilization of microfinance services by people with disabilities requires formulation of financial policies that accord them special consideration. At the same time, improvement is needed in the knowledge, attitudes and skills of the people with disabilities themselves and also microfinance providers.     

Why Are Some People's Needs Unmet?

Australia has legislation that states that 'people with disabilities have the same rights as other members of society to services', yet nearly one-third of all people with spinal injuries have their need for community services unmet. If all people have the same rights, why are some people's needs unmet? How equitable is the distribution of services? This study challenges service providers' beliefs that decisions about the provision and distribution of services are made objectively and equitably. To obtain needed services, people had to demonstrate their worthiness by conforming to providers' stereotype-based expectations of the disabled, based in entrenched philosophies. Service structures reinforce these disabling ideologies Service provision must thus undergo fundamental philosophical and structural change in order to meet community service needs.     

'We're not asking for anything special': direct payments and the carers of disabled children

1997 saw the introduction of the Community Care (Direct Payments) Act in the UK. This piece of legislation introduced a mechanism that enabled local authorities to make cash payments to disabled people aged between 18 and 64 in lieu of directly provided services. The years since 1997 have seen the introduction of additional legislation resulting in direct payments now being an option for many more groups of people, including the carers of disabled children. Following the changes in the legislation, government now wishes to see local authorities significantly increasing the numbers of families that receive direct payments. This paper will report on a research project carried out within one local authority in the north-west of England that has one of the largest numbers of carers of disabled children receiving direct payments in the UK. Using a variety of methods this paper explores how the local authority has made direct payments so widely available to carers and the effect that this has had on their own and their children's lives.     

Enabling everything: scale,disability and the film The Theory of Everything

This article looks at the representation of scale in the 2014 film The Theory of Everything, identifying moments that relate to three concerns: firstly, how disabled people experience scale issues at an all too practical level in daily life; secondly, how Hawking’s experience of scale at the level of both body and mind is (a)typical of the way it is experienced by disabled people generally; and, thirdly, how a focus on the film can prompt some rethinking of perspectives both within disability studies and within the conceptualisation of scale more broadly.     

(Dis)Abled bodies,gender, and citizenship in the Swedish sports movement

The aim of this article is to examine how the Swedish Sports Organization for the Disabled (SHIF) portrays disabled people. A text analysis of two policy documents, ‘Disability Sports Policy Programme’ and ‘Sports Objectives – A Summary of Aims and Guidelines for the Sports Movement’, examines ways in which sports are supposed to affect people’s bodies and contribute to society. Counter to its own aim to integrate disabled people, SHIF constructs such people as different and subordinated to able-bodied people, setting up an insurmountable boundary between the two groups.     

Quota Schemes and the Assessment of Employment Handicap in Britain and West Germany

Government legislation, in the form of the Quota Scheme, has proved ineffective in improving the employment opportunities of disabled people in Great Britain and strenuous efforts have been made by the organisation responsible for its implementation–the Manpower Services Commission–to abolish it. In West Germany, however, most organisations employ their quota of disabled people, although this is set at 6%–double the level required of British employers. Is German legislation in this area really more effective? If so, why should this be? And what are the implications for policy in Great Britain?     

The empowerment of marginals: strategic paradoxes

This article is about the disability movement in the Netherlands and its strategies for empowerment of disabled people. Only since the end of 2003 has the Netherlands enjoyed anti‐discrimination legislation for disabled people. But, how important actually is legislation for the empowerment of disabled people? To answer this question, we take a closer look at social movements and their involvement in empowerment and active citizenship. We criticise the disregard of differences and care in notions of active citizenship and propose instead the idea of a ‘varied society’ based on the notions of diverse and ‘careful citizenship’. One of our main arguments is that empowerment strategies necessary to create this kind of society are above all bottom‐up strategies. However, the highly organised disability movement in the Netherlands is confronted with strategic paradoxes that have ‘de‐powering’ consequences. Based on these paradoxes, five recommendations for the disability movement in the Netherlands are presented.     

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.     

Government Policies and Disabled People in American Indian Communities

Although services and resources for disabled people in the United States have improved greatly as a result of legislation and advocacy efforts, many of the disabled in American Indian communities have yet to benefit from these advances. Inaccessibility to services is often complicated by problems and debates over which agency, state or federal, is responsible or has jurisdiction to provide the services. Meanwhile, Indian communities struggle to accomplish what they can with limited resources.     

Autonomy in Everyday Life,for Whom?

A disability reform came into force in Sweden in 1994 which emphasises the importance for disabled people to increased autonomy and self determination in everyday life. Interviews with disabled women and men have shown that while there are those who, because of the legislation, have increased control in their everyday living, there are also those who in no way have benefited from this reform. Some of the disabled participants have not even heard of the legislation before the time of the interview. They are in a situation that they require support, which they do not have, in order to apply for services of their choice and, if necessary, appeal against 'negative' decisions with regard to the applied for services. The paper concludes with a discussion about the Janus-faced nature of individual rights.     

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.     

Chinese disability independent living policy

Despite strong statements on disability rights in Chinese legislation since 1990, independent living policy as experienced by disabled people falls short of the social inclusion goals expected from such a policy commitment. Analysis of empirical research about disabled people's experiences shows that responsibility for independent living rests primarily with disabled people and their families. Only when they have no family does the government provide support, in the form of institutional care. Very little personal assistance or community-based housing is available. Minimum income support and the introduction of social services are slowly addressing the social exclusion of disabled people in China.     

Thailand's Work and Health Transition

Thailand has experienced a rapid economic transition from agriculture to industry and services, and from informal to formal employment. It has much less state regulation and worker representation relative to developed nations, who underwent these transitions more slowly and sequentially, decades earlier. We examine the strengthening of Thai government policy and legislation affecting worker's health, responding to international norms, a new democratic constitution, fear of foreign importer embargos and several fatal workplace disasters. We identify key challenges remaining for Thai policy makers, including legislation enforcement and the measurement of impacts on worker's mental and physical health.     

Policy development: An analysis of disability inclusion in a selection of African Union policies

Contemporary debates in international development discourse are concerned with the non‐tokenistic inclusion and participation of marginalized groups in the policy‐making process in developing countries. This is directly relevant to disabled people in Africa, which is the focus of this article. The United Nations Convention on the Rights of Persons with Disabilities delineates the principles of inclusion in society. Furthermore, the African Union (AU) plays a key role in advising its Member States about disability issues, and this advice should be reflected in disability‐inclusive policies. This article analyses nine policy or strategy documents produced by the AU, covering the policy domains of education, health, employment and social protection that are crucial to the inclusion of disabled people in international development. These were analysed according to seven discrete elements (rights, accessibility, inclusivity, implementation plans, budgetary allocations, enforcement mechanisms or disaggregated management information systems) using a rating scale of one to four, with four being the highest level of inclusion. The process (for example, level of consultation), the context (for example, the Sustainable Development Goals) and actors involved in the policy development were reviewed as far as was possible from the documents. None of the policies reached even 50% of the total possible score, indicating poor levels of genuine inclusion. Rights scored a highest rating, but still at a low level. This suggests that there is recognition of the rights of disabled people to inclusion, but this is not generally integrated within inclusive implementation plans, budgetary allocations, enforcement mechanisms or disaggregated management information systems for monitoring. The limited socio‐economic inclusion of disability within AU policies is a lost opportunity that should be reviewed and rectified. The findings have broader ramifications for the non‐tokenistic and genuine involvement of poor and marginalized groups in the international policy‐making arena.     

The emancipation of disability studies in Portugal

Despite the interest of the social sciences in issues of exclusion and inequality, the question of disability, as a key issue of reflection, remains absent from many academic areas. The emergence of disability studies owes much to contexts in which the activism of disabled people has revealed the structural conditions that oppress and neglect experiences of disability. Bearing in mind the specific features of the Portuguese socio-political environment, two lines of inquiry are developed in this text. Firstly, what are the challenges faced by Portuguese academics in making disability a central issue, enabling it to confront the silencing of the voices and experiences of disabled people in society? Secondly, how important is it for research to engage with an ethical and political paradigm that supports the rights of disabled people?     

Listening for policy change: how the voices of disabled people shaped Australia’s National Disability Insurance Scheme

Voice has become an important yet ambivalent tool for the recognition of disability. The transformative potential of voice is dependent on a political commitment to listening to disabled people. To focus on listening redirects accountability for social change from disabled people to the ableist norms, institutions and practices that structure which voices can be heard in policy debates. In this paper, I use disability theory on voice and political theory on listening to examine policy documents for the National Disability Insurance Scheme in light of claims made by the disability movement. Although my study finds some evidence of openness in the policy development stage, the scheme falls short of valuing the diverse voices of disabled people as partners in shared dialogue.     

Disability, social exclusion and the consequential experience of justiciable problems

In this article, we examine the situation of disabled people in England and Wales with regard to one specific aspect of social exclusion—experience of justiciable problems, and the potential effects such problems can have on their lives. Having defined 'disability', we examine how this fits within the wider dialogue on social exclusion issues. By analysing the results of the Legal Services Research Centre's (LSRC) periodic survey of justiciable problems, we find that disabled respondents were not only more likely to experience a problem, they also experienced more problems. Increased likelihood of a problem was observed in the majority of problem categories and particularly those relating to issues of social exclusion, such as housing and welfare benefits. This propensity to experience multiple problems can lead to a negative impact on the lives of long-term ill and disabled people.