Service Provision for an Independent Life

How is an independent daily life possible for disabled people when relying upon professional service provision and the bureaucratic gate-keeping systems of the welfare state? This article discusses this question in relation to an interview study. Eighteen mobility disabled and 20 service providers in one local setting in Norway were interviewed. We point out at least three categories regarding how independence is interpreted among the disabled: the super-normal, the independent living activists, and those experiencing powerlessness and lack of support. The analysis points out how these categories are constructed in relations between the disabled person, professional service providers and the gate-keeping systems of the welfare bureaucracy.     

‘Unjust,inhumane and highly inaccurate’: the impact of changes to disability benefits and services – social media as a tool in research and activism

This article details research carried out as part of an MA in Social Research at the University of Leeds (UK). The research was concerned with two key issues: documenting the impact of recent cuts in benefits and services on disabled people; and the role of disabled people’s organisations in responding to this impact. It also explored the use of social media in recruiting research participants. Working with Hammersmith and Fulham Action on Disability, the experiences of 95 disabled people were gathered using focus groups and an online questionnaire distributed via social media. The use of social media to gather participants is something I felt was particularly interesting in relation to disabled people, especially in light of social media’s role in current disability rights campaigns, and a method I feel should be explored further.     

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.     

The L'Arche Program for Persons with Disabilities

The International Federation of L'Arche is made up of intentional, ecumenical, faith-based communities where people with and without developmental disabilities live together. Data on the worldwide federation offers an understanding of L'Arche communities that celebrate and encourage diversity and solidarity. Characteristics of clients and assistants as well as the daily running of homes reveal the inner workings of the program. Through assessing strengths and weaknesses, it is shown that even though L'Arche is a small movement that cannot serve every person with a developmental disability by providing a home and a place of belonging, this program offers a program model with many strengths that should be replicated.     

A review of the participation of disabled persons in the labour force: the Kenyan context

This paper presents a review of the challenges that disabled people experience in participating in the Kenyan labour market. It draws on existing literature and on a narrative of the experiences of one disabled academic in a Kenyan university to highlight some of the forms of discrimination that disabled people have to cope with in their workplaces. The goal is to further our understanding of the nature of barriers that disabled people face in the work environment in Kenya, with a view of exploring ways of addressing those barriers and developing some recommendations for improvement. It is clear from the interview with a disabled academic that, despite strides made by the Kenyan government in terms of enacting the Disability Act, which aims at boosting disabled people’s participation in employment, there is still a big gap between the law and its implementation. What is needed is constitutional change and implementation of the existing law at all levels, as well as provision of resources to support this change.     

Explanatory models for disability: perspectives of health providers working in Malawi

Health providers’ understanding of disability determines how disabled people are treated, and hence it is imperative to address conceptualisations of disability, as this will contribute to better opportunities and realisation of human rights for disabled people. This article will use data from a qualitative study exploring conceptualisations of disability by 22 health service providers from the total health care system in Malawi, including the professional sector (e.g. medical doctors and nurses) and the folk sector (healers and indigenous practices). We will discuss how these perceptions influence the lives of disabled people, using the case of a health service user with physical and speech impairment as an example. Our data show that health providers largely conceptualise disability according to the medical model for disability, contributing to the exclusion of disabled people. The bio-psycho-social model for disability, largely absent as an explanatory model for disability among our informants, is the most inclusive and rights based.     

What do Potential Residents Need to Know about Assisted Living Facility Type? The Trade-off between Autonomy and Help with More Complex Needs

The current study surveyed 74 assisted living facilities to examine the effect of facility type on resident autonomy and the willingness of providers to admit residents requiring complex services. Facility types included adult family homes, residential care facilities, and traditional assisted living facilities. Adult family homes were more willing to admit residents with higher care needs. By contrast, assisted living facilities’ policies did not support the provision of intensive services, but their policies promoted higher resident autonomy, suggesting that consumers may have to choose between autonomy and help with complex needs when exploring assisted living for long-term care.     

Overcoming disabling barriers: disability and attitudes to disability within the Maltese context: an insider’s perspective

This article explores the way a number of disabled people and a parent of a disabled child living in Malta, a small island in the Mediterranean, look at their daily experiences of disability and talk about what changes they would like to see in Maltese society for them to feel more equal and included. While participants acknowledge that much progress has been made in terms of inclusion, they still feel that there are still disabling attitudes that are posing limits to their choices. Lacking a true disabled people’s movement, disabled people express the need for more unity within the disabled community. Even if the article offers hope for the development of a grassroots disabled people’s movement, this possibility remains inconclusive – but the report does offer hope for future action.     

Working with Homeless Populations to Increase Access to Services: A Social Service Providers’ Perspective Through the Lens of Stereotyping and Stigma

Through the lens of stereotyping and stigma, this article examines discrimination and prejudice toward homeless families from the perspective of social service providers. Semi-structured qualitative interviews were conducted with practitioners. A critical social work practice perspective is used to provide a framework for understanding how social worker knowledge about discrimination and prejudice informs the ways in which the workers engage with clients, build capacities, and advocate for clients in an anti-oppressive manner. The themes found in this study include: a) providers’ awareness of bias, stereotyping, prejudice, and discrimination; b) providers’ use of a range of strategies to work with people experiencing homelessness; c) providers’ ideas about strategies that organizations can implement for service provision; and) providers’ belief that additional advocacy and policy are needed in relationship to people experiencing homelessness.     

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.     

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.     

Consumer‐directed personal assistance and ‘care’: perspectives of workers and ventilator users

‘Consumer‐directed personal assistance’ has been a central tenet of the North American Independent Living Movement since its inception. There is, however, surprisingly little research that explores how consumer‐directed assistance gets played out in practice. We conducted a qualitative study that explored the relationships between disabled ventilator users and their personal support workers (PSWs) in supportive housing environments in Ontario, Canada. The results show that while all participants agreed that they adhered to the philosophies of ‘independent living’ embedded in ‘consumer‐directed personal assistance’, how this was understood and enacted varied considerably. Narrow interpretations focused on the task‐oriented aspects of PSWs’ work, while broader interpretations included interpersonal aspects of care, respect and mutuality. We discuss how a conceptualization of consumer‐directed personal assistance can be elaborated to accommodate a notion of ‘care’ while retaining the core tenets of the independent living philosophy.     

Out of touch: local government and disabled people's employment needs

In autumn 2003 we contracted to undertake a study in two district council areas of ways in which they could meet their Local Public Service Agreement (LPSA) targets in respect of disabled people returning to work. We undertook a literature review of barriers to work, interviewed a number of people involved in working with unemployed people and a number of disabled people in these areas. All the employment organisations we had contact with were working to an individual model of disability and the need to change their orientation became the central recommendation of the first phase of this study. This was rejected by those funding the study. At the end of the first year none of the organisations active in this area was able to identify a single disabled person who had returned to work as a result of their help. We conclude that central government policies are doing little to change the perception of the employment needs of disabled people within local government.     

The Exclusion of Disabled People from Positions of Power in British Voluntary Organisations

Disabled people are excluded in various ways from a wide range of social privileges, activities and institutions. Voluntary and charitable organisations promote themselves as champions of disabled people in their struggle for access to the ordinary choices and opportunities of everyday life. This paper reports the findings of an empirical study which demonstrate that in voluntary agencies governed by able-bodied people, disabled people are excluded from positions of power and influence, and they experience the same sorts of barriers and constraints as those with which they are confronted in the wider world. Furthermore, the development of agencies governed by disabled people themselves is constrained by their lack of access to money, staff and other resources.     

Challenging the Image: the involvement of young people with disabilities in volunteering and campaigning

Much of the debate about young people with disabilities focuses on the difficulties these young people experience and their needs in terms of service provision. Rarely is there a focus on the positive contribution that disabled young people themselves make to society. The paper describes research which aimed to highlight the contribution that young people with disabilities make to their communities, by focusing on their participation in volunteering and campaigning. A national survey of disabled young people's participation was undertaken, as well as two case studies of particular projects. The paper describes the range of voluntary and campaigning activities being undertaken by young people with disabilities, highlights the effects of participation on the young people and those around them, and identifies issues for organisations wishing to enable more young people with disabilities to participate in this way.     

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.     

Demonised,impoverished and now forced into isolation: the fate of disabled people under austerity

Disability Living Allowance (DLA) was introduced in the United Kingdom explicitly to help offset the extra costs of disability. The scrapping of DLA and its replacement with the so-called Personal Independence Payment is causing massive concern across the United Kingdom, not least because it comes in the wake of a large number of other cuts, all of which impact disproportionately on disabled people. These changes reflect the retraction of ‘welfare’ across many European countries. As the government has refused to perform a cumulative impact assessment to date, it has been left to grassroots organisations such as DPAC to assess the damage and put the bigger picture together. An article in the New Statesman reports research showing that by 2018 disabled people are set to lose an astonishing £28.3 billion worth of financial support. These changes are going to affect up to 3.7 million disabled people in total.     

Coming to terms with inequality and exploitation in an African state: researching disability in Sierra Leone

In this article, I describe how during my anthropological research in post‐conflict Sierra Leone with a disabled community, I was confronted by experiences of inequality and exploitation. Many disabled people had previous disabling contact with other researchers, organisations and journalists. Others described difficulties surviving the disabling socio‐economic conditions and were not viewed as ‘development’ partners, despite the fact that their images and stories had played a big role in the rebuilding and ‘healing’ of the Sierra Leonean nation state. I ask whether we as researchers and an international community are still not colluding with structures and institutions that exploit disabled people in post‐conflict and post‐disaster countries.     

Disabled People,Health Professionals and the Social Model of Disability: Can there be a research relationship?

The social model of disability is proposed as an alternative to models that have viewed disability as an individual, rather than a socio-political issue. The use of this model to guide both research theory and practice is proposed in order to equalise research power relationships, and involve and empower disabled people. Health professionals have traditionally reinforced the medical model of disability in both research and practice, and this has been seen as contributing to the oppression and marginalisation of disabled people. If the social model is to achieve wider dissemination, it would appear important to develop a dialogue between disabled people and health professionals. However, because of negative perceptions it can be difficult for health professionals to find an appropriate position in relation to disabled people, research and the social model of disability. While not denying the past, it appears essential to look at ways in which disabled people and health professionals can work together to overcome the oppression and marginalisation that has been linked to the provision of health services.     

Independent living: the frontier of communitarian welfare? 1

We hear so much about the ‘cost’ of care, today;and so little about the value society places upon ‘care’ and welfare, which, in turn, can promote economic, social and civic participation within society at large. The question of what should be supported and valued in contemporary society needs exploring critically. In the following I explore three well-established responses to the question of how society should support and deal with disadvantage. I argue that communitarian politics/thought and the independent living movement have key roles to play in forging a better society for disabled people.