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.     

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.     

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.     

Claiming loss in disability

Pervasive representations of disability carry associations with the idea of loss. These have been strongly rejected by the social model movement as stereotyping, which may perpetuate views of disabled people as ‘incomplete’, ‘vulnerable’ or needing rehabilitation. Discourses of ‘loss’, ‘acceptance’ and ‘denial’ remain a lens through which disabled persons are misknown. It is posited that ascribed notions of ‘loss’ serve to maintain feelings of control and mastery within the observer, quieting the destablising psychic threat which disability poses. Further, disabled people positioned as having to ‘deny’ imputed loss may be at risk of suffering self‐alienation relating to a mode of being which is (necessarily, understandably) preoccupied with ‘not being’ the personification of stereotype, at the expense of exploring aspects of identity and self; such an orientation embodies unstable foundations for an entitled, articulate disability movement. Conceptual ideas are based on the author’s experience as a disabled group psychotherapist working with severely physically impaired adults.     

Self-identity and the arts education of disabled young people

Overall, little is known about the ways in which disabled children and young people produce artwork or how they experience arts education. Neither is it known to what extent they are encouraged to produce work that engages with the expressive development of a sense of self that incorporates experiences of impairment and disability. This article is based on my recent PhD research which has investigated the ways in which a group of disabled young students are being enabled, via their arts education, to engage in a process of self-realisation whereby negative and oppressive perceptions of disability have been identified and addressed via their artwork. Whilst current post-social model discourses that emphasise the multiplicity or plurality of identity are acknowledged, my research has demonstrated that disabled young people can be empowered through the expression of the lived experience of impairment and disability and thereby encouraged towards a positive, inclusive and potentially multi-identity perspective.     

Negotiating identities: the lives of Pakistani and Bangladeshi young disabled people

Research has generally amalgamated minority ethnic (all called 'Asian' or 'black') disabled young people's experiences and failed to acknowledge the multiple aspects of Asian and black disabled identities, for example how the combined attributes of race, ethnicity, religion, gender, culture, class and disability shape their perspectives and experiences. In an attempt to address this issue my doctoral research explored the experiences and perspectives of 13 young Pakistani and Bangladeshi disabled people. By drawing on the substantive and theoretical findings which emerged from my analysis in this paper I shall consider how multiple aspects of identity, such as ethnicity, disability and gender, affect this population's identity and self-image and how this makes their experiences different from white disabled young people and other minority groups' experiences.     

Disability Discourses for Online Identities

Beneficial effects of the online medium have been reported for disabled people in terms of providing a 'levelling ground' where they can be treated on their merits as a person, rather than as a disabled person. If this occurs because impairment is invisible online, how then are disabled people managing disability disclosure within this social context? This paper addresses this issue discursively. Participants were recruited from various disability organisations in New Zealand and were invited to take part in an online interview. A 'choice to disclose' repertoire was identified and was organised around three key resources: relevance, anonymity and normality. Embedded within each resource is the idea that the presence or absence of impairment is constructed as a feature controlled by the individual. Positioning identity within a subjectivity removed from impairment was made possible through these resources and was valued by participants. Political implications associated with the absence of impairment are discussed.     

Technically disabled,ill for all practical purposes? Myalgic encephalopathy/chronic fatigue syndrome discourse in Norway

After decades of activism, theorization, and model building, disability remains an undesirable marker of individual identity. Under-reporting of disability on a global scale is at least partly attributable to the stigma attached to disabled identity. Another cause, however, may be the lack of fit between the concept and discourse of disability as they evolve in a political, legislative, and organizational context, and the discourse in which everyday experiences as a disabled person are treated. The article examines discourse about myalgic encephalopathy and chronic fatigue syndrome from the Norwegian public sphere, and discusses the relationship between disability, chronic illness, and identity.     

Disabled yet intact: Guidelines for work with congenitally physically disabled youngsters and their parents

This paper presents the viewpoint that congenitally physically children, having never been nondisabled, may experience themselves disabled yet intact, with the disability an integral part of their identity. However, society, with its pervasively negative attitudes toward disability, perceives disabled people as incomplete, defective, and deviant. Hence, congenitally disabled children face the difficult dilemma of integrating these two divergent views of themselves. Parents and professionals are offered guidelines to facilitate the resolution of this dilemma; however, they must first carefully scrutinize their own attitudes toward disability so that these do not unwittingly impede the parenting and treatment processes.Harilyn Rousso is director, Disabilities Unlimited, Counseling and Consultative Services; consultant on women and disability, YWCA of N.Y.C.; chairperson, Association of Mental Health Practitioners with Disabilities.     

Personal and Political: A Feminist Perspective on Researching Physical Disability

Feminist theory and methodology have much to offer in understanding how disability research has been experienced as alienated research by disabled people. However, feminist research has failed to apply its principles to disability and disabled women's subjective reality has found no place in mainstream feminist work. The paper identifies the challenges for feminism in addressing the interests and reality of disabled women, asserting that it is not helpful to focus on 'double disadvantage'. Disability research itself has much to learn from feminist methodology, in particular the principle of making the personal political. The role of non-disabled researchers as allies of disabled people is discussed, and the importance of research which turns the spotlight on the way in which non-disabled society oppresses disabled people. Finally, it is asserted that disability research and politics are of general relevance because the experience of disability is an integral part of a society characterised by fundamental inequalities and ideologies which divide people against each other.     

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.     

Physically disabled women and sexual identity: a PhotoVoice study

The issue of sexuality for young disabled women is not often talked about in society. Our study aimed to explore four young physically disabled women’s experiences and perspectives regarding sexuality and disability. We used PhotoVoice, a participatory action research method which uses photographs, to capture and convey our participants’ concerns. Through their photographs they showed that everyday interactions with others, particularly strangers or meeting people for the first time, were made difficult by how they were always seen as having a disability. Other parts of their identity were not recognised. The change the young women wanted was for people to see them as young women and not just as disabled.     

Fatness as a disability: questions of personal and group identity

Both fat people and disabled people share common barriers to full societal participation and acceptance. While there has been a substantial amount of literature relating to these two groups as separate entities, there is a lack of contemporary research that investigates the relationship between fat and disability identity formation. The purpose of this qualitative study was to engage in a dialogue with fat individuals and explore the construction of their identities – whether or not they identified with having a disability and, if so, whether or not they viewed their fatness as a disability. Interviews with a sample size of seven participants who self‐identified as ‘fat’ revealed an unwillingness to adopt a disability identity based on their fatness.     

Out in the Margins

Using a social construction model of both disability and lesbianism this paper focuses on the intersection of these two identities in questioning the accessibility of the lesbian community to women who are both lesbian and disabled. Whilst many physical barriers and lack awareness can contribute to the exclusion of disabled lesbian women from the lesbian community, so also can the unquestioned assumptions by many ablebodied lesbian women that disabled lesbian women are asexual and are somehow 'other', and are 'different' from themselves. Disabled lesbian women may be forced to contend with, and resist, discrimination from both an ablebodied heterosexist society and ablebodied discrimination from within the lesbian community. Within the discussion of identities will be an attempt to problematize my own ablebodied lesbian identity in both doing the research and in writing this paper. The challenges of addressing the complex issues of identity commonality, difference, and diversity will be discussed within a feminist perspective.     

Commonality and Difference in the Movement: an 'Association of Blind Asians' in Leeds

Qualitative research with a group of blind Asian people in Leeds indicated that issues of 'difference' were perceived as more important in mobilising disabled people at a local level than the issues of 'commonality' which characterise the international disability movement. Respondents identified more strongly with their experience of specific impairment and specific cultural identity than with their common experience of disablement. It is argued that such issues are common to other social movements and that the disability movement can learn much from the histories of Black people's movements and the women's movement. In building a successful movement at a local, national and international level, disability alliances will need to challenge racist stereotypes about Black disabled people and their families. They will need to support Black-led groups which organise separately while, at the same time, creating more enabling environments for Black people to participate more fully.     

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.     

The Social Model of Disability Under the Shadow of the Revolution: Ex-combatants Negotiating Identity in Nicaragua

The social model of disability, which defines disability as the product of social discrimination rather than the physical, cognitive, or sensory differences of individuals, became the dominant logic of the international disability field with the 2006 passage of the UN Convention on the Rights of Persons with Disabilities. As such, grassroots disability associations around the world are advocating for new rights. These campaigns promote a new identity frame of disabled persons as a universally oppressed group. This identity, however, does not benefit all groups equally and actually threatens some. Using qualitative methods, I compare the usage of the disability identity by two grassroots associations in Nicaragua. Ex-Contra soldiers with disabilities use the identity to obfuscate their discredited history as “traitors” and, instead, represent themselves as unjustly discriminated against disabled persons deserving special benefits and human rights protections. Ex-Sandinista soldiers with disabilities also make claims, but only reluctantly as disabled, preferring to self-identify as war wounded. Because of changes in law, however, Ex-Sandinista soldiers are increasingly unable to make claims as war heroes, but must instead access benefits as persons with disabilities “in general.” This case demonstrates how actors strategically use the social model of disability in relation to local political culture and group identity.     

Telling about something that you do not really know: blind people are talking about vision!

In Turkey, the laws which define disability have become increasingly harsh, and require disabled people to be assessed in order to determine ‘how disabled’ they are. For blind people, as for other disabled people, these assessments have real consequences. This article aims to discuss an appealing piece that arose during a project, which has bearing on how disabled people tend to answer these questions. The participants are legally blind adults. We, as sighted researchers, asked totally blind individuals to describe their vision. Interestingly, they all answered this question without hesitation. The paradoxical nature of this question was only realized during the analysis. We requested the participants to talk about something they do not really know. This might be a reflection of our over-visualized world and might be due to our subtle prejudices. This type of questioning not only has implications for research, but also for assessments of disability in Turkey.     

Facilitated Sex and the Concept of Sexual Need: disabled students and their personal assistants

This paper explores the complex issue of facilitated sex, an issue that has received very little attention by the disability movement. It draws on a small, qualitative study of a personal assistance scheme in a British University, and on interviews and correspondence with disabled students and personal assistants. The paper discusses the way in which disabled students define their sexuality as a 'need', but highlights how this view is not shared by those providing assistance. Personal assistants are more inclined to define sexuality as a sexual 'want' and to conflate physical impairment with either asexuality or a limited potential for sexual activity. The discussion concludes by suggesting that, whilst the issue of facilitated sex is morally complex, the sexual needs of disabled people are more likely to be met if the issues of sexuality and facilitated sex can be discussed and negotiated, in a frank and open manner.