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.     

Does She Boil Eggs? Towards a Feminist Model of Disability

The Social Model of Disability is increasingly recognised as the theoretical and ideological underpinning for the collectivisation and politicisation of disabled people. This paper examines the Social Model from the perspective of disabled women. It then considers the position of disabled women in relation to both the women's movement and the disability movement. It argues that the former is oriented towards non-disabled women and the latter towards disabled men, with a consequent further marginalisation and disempowering of disabled women. Drawing on the history of black feminism, the author (who is a white non-disabled woman, and who teaches anti-discriminatory social work practice based on an integrated theoretical model) concludes by offering to disabled women a reframing of the analysis in which to explore their simultaneous experiencing of their gender and disability.     

Disability identity and attitudes toward cure in a sample of disabled activists

This study investigates the assumption that disabled people want improvements in their functional abilities, or complete cures. Contrary to this assumption, many disabled activists are found to have attitudes in which they refuse treatment that promises a cure. In order to explain this attitude, different sources of disability identity are isolated as potential predictor variables. A multivariate model reveals that self-identity related to a personal affirmation of disability is a significant predictor of refusal of treatment, as is the age of onset of disability. Implications for interactions with medical professionals and utility-based modeling of medical treatment seeking are discussed.     

Crip theory and the disabled identity: why disability politics needs impairment

This article highlights the importance of recognizing both the ontology of impairment as it relates to the creation of the disabled identity as well as why articulations of the disabled identity being ‘crip’ obfuscate potential politics. Examining how the disabled identity has been cast as a coherent social and political category, rather than the messy and complicated identity it truly is, I argue the adoption of a post-structuralist orientation by activists and advocates is bad for disability politics. Providing two examples, the first focusing on a publicized rape case of a person with an intellectual disability and the second on the importance of disability rights claims based on visibility of impairment, I show how articulations like those made in crip theory can have serious, negative implications for the lived experience of people with disabilities. I conclude with a call for disability studies scholars to engage disability politics in their work.     

The work of disabled identities in intimate relationships

This article details a thematic analysis of disabled men and women’s accounts of past and present intimate relationships. Drawing upon the sexual stories of 25 disabled people, informants’ intimate relationships are explored as a site of emotional work, and as a site of other forms of (gendered) work. This article critically questions the work carried out by informants and considers the ways in which it was shaped by their lived experiences of gender, sexuality, impairment and disability. The article concludes that the requirement to carry out forms of work within intimate and sexual life constituted a form of psycho-emotional disablism.     

Tensions and unity in the struggle for citizenship: Swedish disability rights activists claim ‘Full Participation! Now!’

This article analyses the claims of contemporary disability rights activists mobilising in a context where de facto second-class citizenship co-exists with legal and political declarations about the rights of disabled people. As an empirical case, it focuses on the blog ‘Full Participation.Now’, which was initiated by disability rights activists in Sweden. Drawing upon citizenship research, the article points to the tensions and dilemmas featuring the bloggers’ demand for participation and equality, as well as the challenges relative to their struggle. Although the bloggers formulate contrasting arguments, the article highlights that the activists share a common aspiration for ‘full citizenship’.     

Do disabled people need a stronger social model: a social model of human rights?

Abstract

We introduce the social model of disability by reflecting on its origins and legacy, with particular reference to the work of the Union of the Physically Impaired against Segregation. We argue that there has been a gradual rolling back of the rights and entitlements associated with the social model of disability. Yet no alternative for the social model has been proposed in response to such threats to disabled people’s human rights. Disabled people need a stronger social model that acts as a means to a society which enables and ensures their rights; the right to live a dignified life, as well as to live in an environment that enables people to flourish with disability.     

‘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.     

‘A frog in a well’: the exclusion of disabled people from work in Cambodia

Based on ethnographic research conducted in north‐west Cambodia in 2000–2001, this paper examines why disabled people experience systematic marginalisation in the labour market. Although there are no official data on the relationship between disability and employment status in Cambodia, this research suggests that disabled people are more likely than their able‐bodied counterparts to be unemployed, in low status occupations, earn less or be out of the labour market altogether. Consequently, disabled people are more likely to live in poverty, experience social isolation and poor mental health. I argue that disabled people’s social status effectively shapes their work patterns through (mis)conceptions that associate ‘disability’ with ‘inability’ to work and to be employable. This paper illustrates how geographical processes fix disabled people in their socio‐spatial place, which together with ideological and structural inequalities distinguish and entrench their poverty from that of other social groups.     

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.     

Disabled Women and Reproductive Rights

Both the women's and disability rights movements have paid scant attention to the concerns of disabled women, especially involving sexuality, reproductive freedom and mothering. Although their concerns may seem opposite of the women's movement's primary agenda, they are based on the same position: women must not be defined solely by biological characteristics and have the right to make decisions about their bodies and lives. Disabled feminists often support 'reproductive rights', but also have different perspectives on abortion and reproductive technologies than non-disabled feminists. The literature indicates that the reproductive rights of disabled women are constrained by: the assumption that disabled women are asexual; lack of reproductive health care, contraception, and sexuality information; and, social resistance to reproduction and mothering among disabled women. Disabled women are at risk for a range of undesirable outcomes, including coercive sterilization, abortion or loss of child custody.     

Disabled People: active or passive citizens - reflections from the Malaysian experience

The concept of citizenship has once again entered centre-stage in the debate among political philosophers, welfare theorists and activists. Marginalised groups, including disabled people around the world, are making a claim for their inclusion, rights and equal opportunities on the basis of citizenship rights. The Malaysian experience of disabled people within a newly-industrialising country draws lessons on how a disadvantaged section of Malaysian society struggle to enhance their rights as citizens of the nation and a share of the nations wealth. While there are difficult challenges, there are also positive indicators for the active citizenship participation of disabled people among fellow Malaysians.     

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.     

How people with disabilities experience programs to prevent intimate partner violence across four countries

Women with disabilities are more vulnerable to violence, including intimate partner violence (IPV), yet the majority of emerging IPV prevention programs fail to explicitly consider the needs of participants with disabilities. Women and men living with disabilities engaged with IPV prevention programs in four countries were interviewed to explore how disability shaped their experiences of gender, violence, IPV, and whether the programs met their disability related needs. In-depth interviews were conducted with 16 women and 15 men living with disabilities in Ghana, Rwanda, Tajikistan and South Africa. The data were analysed thematically and compared across the settings. Participants described experiencing disability-related stigma, discrimination, exclusion, and for women, increased vulnerability to IPV. Barriers to full participation in programs included limited accessibility, and lack of disability-specific materials, recruitment or outreach. Enablers of inclusion included recruitment and monitoring strategies aimed at people with disabilities, partnering with a local disabled people’s organization, training staff in disability inclusion, and raising awareness of disability rights. The data encouragingly suggests that inclusion of women and men with disabilities in IPV prevention programs designed for the general population has beneficial outcomes. Inclusion can prevent violence, promote their wellbeing, support economic empowerment, and challenge disability-related stigma and discrimination.     

‘How dare you pretend to be disabled?’ The discounting of transabled people and their claims in disability movements and studies

Although the contours of the ‘disabled person’ category are questioned by anti-ableist activists, they remain rigid regarding transabled people (who want to become disabled). For anti-ableist activists, transabled people do not count as disabled. They are perceived to: be falsely disabled; steal resources from disabled people; and be disrespectful by denying, fetishizing, or appropriating marginalized realities. By combining critical discourse analysis, genealogy, and deconstruction, I examine these negative discourses to encourage alliances between anti-ableist activists and transabled people. Ideas developed in disability and trans studies reveal the limits of these discourses anchored in ableist and cisnormative* assumptions.     

Complex Families and Late‐Life Outcomes Among Elderly Persons: Disability,Institutionalization, and Longevity

The authors examined the effects of marital status and family structure on disability, institutionalization, and longevity for a nationally representative sample of elderly persons using Gompertz duration models applied to longitudinal data from 3 cohorts of the Health and Retirement Study (N = 11,481). They found that parents with only stepchildren have worse outcomes than parents with only biological children. Elderly mothers with only stepchildren become disabled and institutionalized sooner, and elderly men with only stepchildren have shorter longevity relative to their counterparts with only biological children. The effect of membership in a blended family differs by gender. Relative to those with only biological children, women in blended families have greater longevity and become disabled later, whereas men in blended families have reduced longevity. The findings indicate that changing marital patterns and increased complexity in family life have adverse effects on late‐life health outcomes.     

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.     

Disabled men with muscular dystrophy negotiate gender

Disability is often portrayed as a one-dimensional category devoid of further intersections. Work which has addressed the intersection of disability and male gender has rarely considered different types of disability or impairment, or foregrounded the experiences of disabled men themselves. This article is based on empirical work carried out in England with men who have Duchenne muscular dystrophy (DMD). We explored with participants their sense of themselves as men and their commonalities and differences with other men. Findings suggest that men with DMD claim, reject and redefine what it meant to them to be men. Doing gender was often heavily reliant on the availability and permission of others. Our study highlights the usefulness of exploring gender with men with particular experiences of disability and of looking at how this might change over a life course, especially when the nature and extent of the life course is a precarious one.     

Public health,research and rights: the perspectives of deliberation panels with politically and socially active disabled people

Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.     

Developing a model of disability that focuses on the actions of disabled people

Disabled people, writers on disability and disability activists stress the importance of disabled people being included in all aspects of society. I argue that a major omission from this inclusiveness is that no current model of disability focuses on the impact of the actions of disabled people on disability. Disabled people are not passive bystanders, powerless to reduce the restrictions of disability. On the contrary, we are central to actively limiting its constraints. I develop a model of disability, called ‘active’, which focuses on the effects on disability of the individual and collective actions of disabled people. I describe published findings which indicate that engaging in self-help, using support groups and deploying assistive technology can all reduce the limitations of disability. Recent increases in the number of disability support groups and developments in assistive technology have substantially augmented the potential for disabled people to combat the effects of disability.