What makes a good self-advocacy project? The added value of co-production

Abstract

This article describes how two self-advocates worked with two academics and others to produce a toolkit to help self-advocacy groups run better projects. We begin by explaining why this research needed doing and how we carried out the research. We then talk about what co-produced research means to us and how we think it is different from participatory or inclusive research. We discuss whether the research and this article were co-produced. We finish by looking at why we think co-production added value to this research. Our aim with this article is to help activists and academics work together to achieve two things: good-quality research findings; and big differences to disabled people’s lives.     

Disability and sex work: developing affinities through decriminalization

This article argues that strong policy frameworks are required to support the health and well-being of sex workers, disabled people, and disabled sex workers. Through an examination of the context of sex work in Canada, we articulate the flaws of sex work criminalization and the persistent barriers that criminalization creates. Our analysis of the intersection of disabled sexuality and access to sexual services identifies how the sex industry can aid in the flourishing of the erotic lives of disabled people. The article culminates in a discussion of the benefits of sex work decriminalization for sex workers, disabled people, and disabled sex workers.     

Socially disabled: the fight disabled people face against loneliness and stress

Abstract

In 2018, the United Kingdom appointed its first Minister for Loneliness. This article discusses some of the barriers which may contribute to why disabled people were found to be one of the largest groups affected by loneliness. Utilizing ethnographic examples supported by facts, the article demonstrates how even when seeking to fight loneliness, and to reduce the stressors of everyday life, disabled people are often at a disadvantage, or excluded. The article raises questions concerning self-social exclusion and discusses recommended avenues for further research.     

Being an inclusive researcher: seeking questions,raising answers

Abstract

In this article, I reflect on three incidents that occurred in my inclusive research work. As a conceptual framework, I use Bourdieu’s call for a reflexive sociology. My reflection is informed by the principles of the disabled people’s movement, especially giving primacy to the experiences and voice of disabled people. It is also informed by the strong link between the disabled people’s movement and disability studies, which requires academics (including non-disabled ones like myself) to be attentive to their activist role. Making sure that this role is carried out effectively, I argue, entails considering the various factors that make our work possible, and being attentive to the impact of our work. It also entails asking questions, of ourselves and others, and being especially attentive to questions that would go unasked unless we stop to reflect about our work, and the possible answers that these reflections can lead to.     

Precarious belonging: blindness,masculinity, and work in Polish young adult literature of the 1970s and 1980s

ABSTRACT

This article explores the relationship between disability, identity, and productivity in two Polish young adult novels published under state socialism: Jak trudno kocha? (How difficult it is to love) and Spotkania (The meetings). How Difficult it is to Love by Jerzy Szczygie? (1976) tells the story of a young blind man who, after living many years “unproductively” with his mother, decides to study and work. Published in 1986, Klementyna So?onowicz-Olbrychska’s novel The Meetings also focuses on a blind male teenager who leaves his hometown to live with other blind students at a residential school where he plans a future profession. The two works are concerned with the processes of becoming disabled and becoming a part of the blind community. Crucially, it is productivity – the main value in a socialist state – that participates in the formation of disability identity and enables disabled men to form separate communities and workshops for disabled people.     

‘The invisible enemy’: disability,loneliness and isolation

Abstract

The aim of this article is to quantitatively explore the relationship between disability, emotional loneliness and social isolation. The data analysis presents a number of statistically significant findings which illustrate that disabled people (N?=?250) were at increased risk of experiencing emotional loneliness and social isolation compared with the nondisabled group (N?=?355). This study identifies a number of disabling barriers which result in this overrepresentation of disabled people. The study aims to move away from a pathological explanation of linking loneliness and social isolation to disability, in order to explain this occurrence from a barrier-based approach.     

‘We do not have chiefs who are disabled’: disability,development and culture in a continuing complex emergency

In 2011 The World Health Organization declared disability an international development priority. Yet disability and disabled people are barely visible in the Millennium Development Goals. Exploring disabled people’s involvement in development processes in Binga District, Zimbabwe, this article: illuminates the impact of cultural beliefs about disability that systematically exclude disabled people from development initiatives; assesses the strengths and limitations of the capability approach for theorising disability; and considers the role of (u)buntu, a philosophy based on human relatedness and interdependence, in promoting justice for disabled people in sub-Saharan Africa.     

Recognizing Abuse and Neglect in People with Severe Cognitive and/or Communication Impairments

ABSTRACT

It is widely acknowledged that physical abuse of persons with severe developmental disabilities is prevalent, usually perpetrated by a residential care provider and is rarely reported. However, no solid research on the topic has been reported. This article notes the lack of information about protective services directed to the developmentally disabled population and lack of coordination between agencies serving people with developmental disabilities and those providing protective services. The signs and symptoms of abuse in the developmentally disabled population, the alternative communication strategies required when interviewing, and the special skills needed for case assessment are presented. The author ends with a series of federal, state, and community level policy recommendations.     

Activism and the academy: losing the ideological and material battles

Abstract

In this article written in the summer of 2018 Professor Michael Oliver sought to convey a sense of urgency about the need to reinvigorate the relationship between disability, the academy and activism. In his usual clear unswerving style that is both liberating and enabling in its directness he calls upon all engaged with the journal to remember that the foundations of disability studies emerged out of democratic organisations of disabled people and must remain committed to placing the experiences of disabled people at the centre of academic and activist enterprise. He places emphasis on the original purpose of the journal to build on the social model of disability in order to produce real social change expressing frustration about what he saw as an increasing ineffectualness within the academic community to confront what is really happening to disabled people. He is forthright when describing his hope that disability activists and academics will strengthen the future of disabled people, and the future of disability studies too, by working ever more closely together.     

Every Child Matters outcomes: What Do They Mean for Disabled Children and Young People?

To date, little attention has been paid to the appropriateness of the Every Child Matters (ECM) outcomes framework to disabled children. ¹ 1 For brevity, the term children is used to apply to children and young people up to 19.
This article reports findings from a research project which sought the views of disabled children and their parents about their desired outcomes. Twenty‐nine children and 90 parents were interviewed. The findings indicate that ECM outcomes are appropriate to disabled children but can have different meanings. In addition, the need to recognise the importance of maintaining outcomes, as well as progress, is highlighted.     

Home of the Brave,Frantz Fanon and cultural pluralism

Abstract

This article examines Mark Robson's Home of the Brave (1949, USA), a Hollywood social problem drama about anti-black racism, and the brief but vivid response to the film presented in Frantz Fanon's Black Skin, White Masks (1952). Fanon enables a rethinking of some of the film's most central assumptions and the discourses upon which the story relies. At the same time, Fanon's response conveys information about his own biography and his perspectives on cultural representation generally. The article examines the film as a document that reveals competing claims about anti-black racism and, through Fanon's commentary, revisits the relationship between cultural pluralism and racial ideologies in the mid-20th century USA. The article explores the nature of Fanon's anti-racist commentary on the film as a form of 'cultural studies' that offers transnational historical insight and simultaneously provides ways of re-examining the national specificity of race thinking.     

Disabled citizens as researchers – Challenges and benefits of collaboration for effective action and change

ABSTRACT

This article reports on the evaluation of an initial pilot for a collaborative research project undertaken in an English county between a service user-led Coalition of Disabled People, the local authority and local university. The project sought to map the assets and resources for/of disabled people in their local community as well as needs and gaps, to inform the Coalition’s strategic planning and raise awareness of disability issues across the county.

The article discusses an inclusive, co-productive approach using participatory action research. It focuses on experiences from the pilot stage of the project and considers how the authors worked together with the required knowledge exchange and power-sharing to recruit and train researchers with expertise from their personal experience of disability. Recruitment ensured they had relevant qualities and skills that could be developed, to increase their confidence, knowledge and skills set as researchers. They then undertook photo-elicited, semi-structured interviews with other disabled people, analysed findings and created photographic exhibitions for dissemination and awareness raising.

Demonstrating a commitment to emancipatory research and collective action for change, the discussion considers the promotion of shared values within the research team, and explores the benefits and challenges encountered during the process and how the particular stages were managed to achieve the beneficial outcomes of the pilot. The article seeks to add to the literature of participatory/emancipatory action research for social work.     

Representations of vulnerability,innocence and evil in the murder of a disabled person

Abstract

This article uses the murder of a young man with learning disabilities as a case study to comment on the representations used in the reporting of crime against disabled people. It uses social representations theory as a theoretical lens to assist us to see that portrayals of both victim and perpetrators by the media and others serves to distance them from each other, and from mainstream society. It highlights how this process of ‘othering’ serves to disadvantage disabled people and places a disproportionate emphasis on individual characteristics.     

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.     

Aging,Disability, and Disabled Older People in India

Summary

India is witnessing a demographic revolution, leading to a considerable increase in the proportion of older people in the population. Similarly, life expectancy of both the mentally and physically disabled has improved considerably. About 5% of Indian older people have problems with physical mobility. Aging has become a gender issue in India not only because more women are surviving into old age; they are also vulnerable and disadvantaged in many ways. In most cases they are the only caregivers available for the old and disabled. Older Indians are considered a high-risk group for multiple morbidity. It is estimated that nearly four million Indians suffer from mental problems. India has around 12 million people designated as “handicapped.” However, little information is available about disabled people who grow older. The National Policy on Older Persons, which has been recently formulated, aims at providing an improved quality of life for millions of older Indians. However, the concerns of older disabled and of the disabled who grow old are still treated separately in both policy and practice.     

From multiple barriers to a co-prosperity society: the development of a legal system for disabled people in China

Abstract

The legal system for disabled people has progressed significantly since China’s government signed the United Nations Convention on the Rights of Persons with Disabilities 10 years ago. The newly released ‘New Progress in the Legal Protection of Human Rights in China’ has attracted widespread attention because it advocates that the protection of human rights for disabled people should be reflected not only in legislative and judicial aspects but also in administrative sectors and international affairs. This article explains that the legal system involving dozens of laws and decrees in China aims to break through multiple barriers experienced by disabled persons and is beneficial to building a co-prosperity society in China. With the vigorous development of the international disability rights movement, ways to seize domestic and international opportunities to build a disabled-friendly social atmosphere deserve additional research.     

LATIN AMERICA

Abstract

This article draws on theories of colonial discourse, cultural representation, subjectivity, feminist studies, cultural studies, and historical analysis to examine how the representations of American Indians in 1990s television fiction are constructed, especially in the American television fictions Northern Exposure, Twin Peaks and Paradise. Central to this analysis is the discussion of colonial discourse and representations of American Indians as Other on popular American television and, more generally, in mainstream American discourse. This examination is set in the context of the issues surrounding the treatment of Indian people in mainstream history, in film, and in contemporary television fiction. It is the authors' position that in the easy acceptance of a stereotyped cultural construction, mainstream America has come to little knowledge or understanding of American Indian nations, their contemporary concerns, or their discrete identities. For the mass market, their contemporary concerns, or their discrete identities. For the mass market, the Indian is either the Vanishing Race of Edward Curtis's photographs or the savage of the captivity narratives, and the process by which that imaginary functions to contain American Indian identity continues in our most popular narrative today: television fiction.     

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.     

‘Stuck In The Middle With You’: Towards Enabling Social Work with Disabled People

This article explores progress to date in embedding enabling social work understandings and practices with disabled people by reviewing the UK social work curriculum. Based on these observations and the ideas from UK disability studies, it will offer possible solutions or at least better pathways to enabling practice with disabled people. As Meekosha has pointed out in a global context, to date social work has been experienced as an ambivalent practice [Meekosha, H. & Dowse, L. (2007) ‘Integrating critical disability studies into social work education and practice: an Australian perspective’, Practice, vol. 19, no. 3, pp. 59–72], often both enabling and disabling; an intervention that can both lock and unlock resources, and challenge and reaffirm traditional notions of the ‘disability problem’ [Finkelstein, V. (1993) ‘Disability: A Social Challenge or an Administrative Responsibility?’, in Disabiling Barriers ‐ Enabling Environments, eds J. Swain, V. Finkelstein, S. French and M. Oliver, Sage Publications in association with the Open University, London]. Social work also has the potential to both challenge, but also be an (inadvertent) apologist for contemporary social support and welfare systems. Indeed it is clear that social work as a profession and social care as a policy area have been the poor relations of healthcare and health professions [King's Fund (2011) Social Care Funding and the NHS: An Impending Crisis?, King's Fund, London]. Viewed anthropologically, social work remains a largely non-disabled workforce ‘ministering’ to disabled clients (BCODP, 1997). This might reinforce the perception of ‘us and them’ in some social work encounters. As Paul Longmore questioned, can we begin to go ‘beyond affliction’ (2003) in our work with disabled people? Can social work help support the collective struggles of disabled people or is their role inevitably to reinforce that of individual(ised) clients?

The development of the personalisation agenda and self-directed support is clearly welcome in this context [DoH (2006) Our Health, Our Care, Our Say: A New Direction for Community Services, Department of Health, London; DoH (2007) Independence, Choice and Risk: A Guide to Best Practice in Supported Decision-Making, Department of Health, London; DoH (2009) Personalisation of Social Care Services, Department of Health, London]. Such developments reflect the changing service user–professional relationship. The temptation to see these developments as the icing on the social support cake needs, however, to be resisted. Arguably, with the increased rationing of social support, the continued role of social workers in assessment and monitoring of support could be seen to require a yet more reflexive and enabling professional education and training in an age of austerity, one where previously supported disabled people are being told that their needs can no longer be met.