Negotiating Psycho-emotional Dimensions of Disability and their Influence on Identity Constructions

This paper uses Foucault's concept of 'technologies of power' to explore the ways in which the psycho-emotional dimensions of disability are created and maintained within society. The manner in which gaze and self-surveillance operate on the bodies of people with impairments to leave them feeling worthless, unattractive and stressed is considered, and the effects of impairment on these processes are also discussed. However disabled people are not simply passive victims of this form of emotional disablism--many exercise agency and resist. The manner in which disabled people resist the negative stereotypes is described and the process of 'coming out' as a disabled person is offered as an example of a 'technology of the self'. This interplay of dominating and emancipatory forces is shown to contribute to a disability identity, which is fluid and which better represents the diversity of the disability experiences of disabled people than an essentialist disability identity.     

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.     

Female researcher safety: the difficulties of recruiting participants at conventions for people with dwarfism

Disability research often favours the use of disabled researchers carrying out research with disabled participants. It is believed to empower disabled people and create results that are more valid. However, little consideration has been given to the ethical implications of this type of research process, including in relation to female researcher safety. This paper provides an autoethnography of my experience of being sexually assaulted when recruiting participants for my doctoral research, at a convention held by an association for people with dwarfism (The term used to refer to someone with this impairment often differs. In this research project terms participants preferred included; dwarf, person with dwarfism, short stature and restricted growth. I use the term ‘person with dwarfism’ as it fits in with the social model of disability by demonstrating that a person is ‘dwarfed’ by a built environment, which is constructed for the average sized person and is therefore disabled). Focusing on gender, disability and sexuality, situated in space, this paper explores the problems encountered when trying to recruit participants within a particular space. This paper suggests that the safety of the researcher, needs more consideration and offers recommendations to increase researcher safety.     

Towards an Affirmation Model of Disability

In this paper we argue that a new model of disability is emerging within the literature by disabled people and within disability culture, expressed most clearly by the Disability Arts Movement. For the purposes of discussion we call it the affirmative model. It is essentially a non-tragic view of disability and impairment which encompasses positive social identities, both individual and collective, for disabled people grounded in the benefits of lifestyle and life experience of being impaired and disabled. This view has arisen in direct opposition to the dominant personal tragedy model of disability and impairment, and builds on the liberatory imperative of the social model. Critiques of the latter have been consistently expressed as, or interpreted as, re-affirmations of personal tragedy, particularly in relation to impairment. In this analysis the affirmation model addresses the limitations of the social model through the realisation of positive identity encompassing impairment, as well as disability.     

‘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.     

‘The language is disgusting and they refer to my disability’: the cyberharassment of disabled people

Disabled people face hostility and harassment in their socio-cultural environment. The use of electronic communications creates an online context that further reshapes this discrimination. We explored the experiences of 19 disabled victims of cyberharassment. Five themes emerged from the study: disability and health consequences, family involvement, misrepresentation of self, perceived complexity, and lack of awareness and expertise. Cyberharassment incidents against disabled people were influenced by the pre-existing impairment, perceived hate-targeting, and perpetrators faking disability to get closer to victims online. Our findings highlight a growing issue requiring action and proper support.     

Disabled people's attitudes toward other impairment groups: a hierarchy of impairments

This article seeks to explore, through the literature, the notion that a hierarchy of impairment exists from the perspectives of both disabled and non-disabled people. The literature suggests that disabled people, like non-disabled people, do not always wish to be associated with other impairment groups for a variety of complex reasons, including competing for scarce allocations of funding/resources, sexual attraction, stigma, etc. The article concludes that further research is required in relation to disabled people's attitudes toward other disabled people, in general, and other impairment groups. Such research would expand our knowledge with respect to the degree to which disabled people view themselves as a homogenous in-group, as a set of separate impairment groups, or viewing impairment as only one facet of identity. These findings would help the disability movement to achieve greater inclusiveness amongst different impairments.     

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.     

A sociology of impairment

Impairment has a ubiquitous and troublesome position within disability studies. The absence of an effective theoretical understanding of impairment has been a major problem for the field. One way out of this impasse is to situate impairment sociologically. By regarding impairment as a thoroughly social dynamic, and examining it though a sociological lens, it is possible to develop a richer understanding of the experiences, politics, and identities of disabled people. Some of the key elements of a sociology of impairment include: using a socially-embedded phenomenology; exploring the social creation of impairment through inequality; deconstructing the cultural construction of impairment; critically examining diagnosis; and analyzing the personal and political significance of impairment identities.     

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.     

Conceptualising the psycho‐emotional aspects of disability and impairment: the distortion of personal and psychic boundaries

Recent feminist critics of the social model of disability have pointed towards a danger that disability studies may give relatively little attention to personal and emotional aspects of disablist oppression and impairment. We argue for consideration of the centrality of the distortion of personal and psychic boundaries as a key aspect of oppressive relational dynamics surrounding disability. Within the observer the disturbing psychic evocations of disability, and related defences, are connected to the maintenance of dynamics of unreal, collusory and alienating modes of relating, which may deprive disabled people of the recognition of subjective experience and personhood. Skewed socialisation of disabled people, involving inter alia the protection of the emotional lives of others, as well as the reality of inaccessible material resources, contributes to the internalisation of disablism and the ideological recruitment of disabled people as complicit in their marginalisation.     

Children's perceptions of their disabled siblings: ‘she's different but it's normal for us’

This paper reports on a two‐year study exploring children's understandings of disability. It focuses on findings from interviews conducted with 24 children, aged 6 to 19, who had disabled siblings, exploring their perceptions of impairment, disability and difference. Most were very aware of their sibling's impairment but the majority did not see that as making their siblings different. Where difference was perceived, this was sometimes attributed to their siblings' experience of disability—unequal treatment and the hostile attitudes of others. Most children saw their disabled sibling as holding various identities and their shared biographies, as members of the same family, may have taken precedence over any perceived differences.     

Reducing disablement with adequate and appropriate resources: a New Zealand perspective

This article presents the qualitative findings from a larger mixed methods study of the barriers and costs associated with disability in New Zealand. A social model of disability framework was integrated with an economic cost model using consensual budget standards to (1) identify key barriers disabled people experience in their everyday living and (2) develop consensus about the resources disabled people agree they require to reduce or remove them. Forty-nine people with physical, hearing, vision or intellectual impairment participated in a series of 8 impairment-based focus groups. The analysis identified inaccessible environments, negative attitudes, unreliable transportation and poor access to information as key barriers. However, lack of adequate and appropriate resources (e.g. equipment, modifications, support, transport and time) to address these barriers was the overarching obstacle to participation. The inclusion of time as both a barrier and a valuable resource is arguably the most important contribution of the study.     

Interviewing Non-disabled People About Their Disability-related Attitudes: seeking methodologies

Within the field of disability studies there has been a concentration upon the representation of disabled people's experiences within a social context. However, research into non-disabled people's perspectives on disability and impairment has traditionally been based upon a psychologically-driven individualist model of disability which sees disabled people uncritically as 'the problem'. In this apparent epistemological divide, little work has been done on the exploration of non-disabled people's perspectives from a social model angle. This paper outlines a current study of the formation of such perspectives, and specifically explores the methodological conditioners of such an enquiry.     

Simulation Exercises in Disability Awareness Training: A Critique

This paper takes a critical look at simulation exercises. Little evidence exists that these exercises have a positive effect on either attitudes or behaviour but, despite this, they are used extensively in disability awareness training, both for children and adults. It is argued in this paper that by individualising and medicalising disability, and by focusing excessively on problems and difficulties, simulation exercises provide false and misleading information, and inculcate negative, rather than positive, attitudes towards disabled people. It is suggested that simulation exercises fail to simulate impairment correctly, and address neither the coping strategies and skills disabled people develop in living with impairment, nor the cumulative social and psychological effect of encountering social and physical barriers over a lifetime. Rather than using simulation as a means of attempting to understand the experience of disability, the paper concludes by advocating the use of disability equality training, which is devised and run by disabled people themselves.     

Leaving Special School: the next step and future aspirations

One of the most important changes within the life-course is the movement from 'childhood' to 'adulthood'. This takes place through many different dimensions of experience, for example, biological, legal, social, cultural, emotional and attitudinal. It is also important to recognise that the concepts, 'childhood' and 'adulthood' are ambiguous and hard to define [Jones, G. &; Wallace, C. (1992) Youth, Family and Citizenship (Buckingham, Open University Press); Coles, B. (1995) Youth and Social Policy: youth, citizenship and young carers (London, UCL Press)]. This is partly due to the fact that they are not static concepts, but are historically and culturally fluid, open to interpretation and change [Ward et al. (1991) The Transition to Adulthood of Young People with Recorded Special Education Needs, final report to The Scottish Office Education Department (Department of Education at the Universities of Edinburgh and Stirling); France, A. (1996) Youth and citizenship in the 1990s, Youth and Policy, 53, pp. 28-43]. Despite this conceptual ambiguity, the transition from 'child' to 'adult' status is viewed as an important achievement within society. However, it is a complex, involved process, which evolves over a period of time. Of course, not all-young people undertake the transition in a similar manner or at the same pace. Social ideas and prejudices, whether these are class, gender, race or disability based, can and do effect the transition experiences of different groups of young people. This paper focuses upon the transition experiences of disabled young people, a group frequently forgotten or hidden within discussions of 'youth'. In particular, it explores and evaluates traditional models of transition with the aid of data drawn from a study of disabled young people leaving special schools [Mitchell, W. (1998) Leaving School - transition experiences and routes taken by disabled young people, D.Phil. thesis, University of York]. The paper initially focuses upon young people's next educational/vocational step after school leaving in relation to the traditional ideal of a school to work transition. Taking a broader approach the paper then explores and begin to unpack the complex concept of a more independent 'adult' status from the perspective of the study's young people and their parents/carers. Have the young people taken steps towards a more 'adult' independent life and, if so, in 'what' areas and 'how'?     

Disability analysis of longitudinal health data: Policy implications for social security disability insurance

The relationship between impairment, disability, and labor force participation is investigated longitudinally through disability determinations using objective medical evaluations. The sensitivity and specificity concepts are used to study the disability determination standards and their ability to predict capacity to work. Approximately one of every eight men in the study had a physical impairment that met or equaled the medical listings of impairment sometime through age 65; for the women the figure was slightly less than one-half that size. Many of these people were seriously ill; within four years of the disabling condition being established, about two of every five people were dead, suggesting the listings of impairment are indeed sensitive to serious health problems. The majority of the men who did meet or equal the medical listings of impairment were alive four years after the disabling condition was determined, and most of these survivors were in the labor force despite the disabling impairment. The study shows that withdrawal from the labor force is based on age in combination with any level of impairment; and the disabled are a unique subset of the impaired, distinguishable not by health but demographic and socioeconomic characteristics.     

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 additional cost of disability: a new measure and its application to sensory impairment

This article introduces a method using consensual budget standards to estimate additional costs incurred by households that include disabled people with specified impairments. The article reports on a first application of this to UK single adults with sensory impairments. Using the Minimum Income Standard method, the research aims to identify the cost of disability by working with groups of disabled people to agree what additions to minimum budgets for non-disabled people are required for someone with a given impairment. This provides a more tangible account of the cost of disability than economic analysis of living standards achieved by disabled and non-disabled people, and adds to surveys of actual spending on additional items, which do not account for unmet need. The research on vision and hearing impairment yields new insights into costs arising from the way disabled people live their everyday lives, not just from spending on adaptations and equipment.