Working with Parents of Exceptional Children: The Need for More Careful Thought and More Positive Action

The majority of studies relating to families of handicapped children emphasise the negative emotions of the parents, particularly initial shock followed by guilt, chronic sorrow and anxiety. Rarely have these studies relied on the parents' assessments of their own reactions. As a consequence of this, there is little recognition in the relevant literature of either the wide range of parental reaction or the successful and satisfying adjustments which many parents make. A second important limitation in these studies is the absence of a theoretical framework either to test the occasional contradictions that can occur or arising out of the findings themselves.

As an alternative approach, it is suggested that a theoretical position could be developed from the concept of need recognising that the needs of the parents are distinct from those of their handicapped child, although usually consistent with them. An analysis of the research literature (Burden, 1981) has already identified five areas of need-the need for information, support, advice, access to resources and opportunities for social interaction.

It is recognised that the concept of need is a necessary but insufficient basis for an adequate theory. The notion of support coinciding with the parents' reaction to transitions in the child's life is offered as an additional factor in the family's successful adjustment. Three other variables are cited as affecting parental adjustment-individual differences in resistance to stress; the extent and nature of the child's disability and the tolerance of the community to that particular disability. In developing this theoretical framework, reference is made to some of the practical problems associated with the implementation of professional services.     

No African renaissance without disabled women: a communal approach to human development in Cape Town South Africa

The African Renaissance is upon us. Those who have eyes to see, let them see.

Disabled women who live in wooden shacks in the peri-urban areas of Khayelitsha in Cape Town, South Africa, participated in storytelling workshops over a two-and-a-half-year period. They shared experiences of what helped or hindered their social and economic development since becoming disabled. The workshops were part of a participatory action research (PAR) study of the Division of Occupational Therapy, University of Cape Town, together with Disabled People South Africa (DPSA) and the Zanempilo Health Trust [formerly South African Christian Leadership Assembly (SACLA) Primary Health Care Project].

The findings revealed the struggles and sadness, as well as the strengths and spirit that the women experienced within their every day context at an individual, family and community level. The women spoke strongly about meeting physical, emotional, and spiritual needs (human development) as the means to social and economic development.

The discussion reflects on the many paradoxes of disability encapsulated in the essence of interdependence of Ubuntu. Three themes discussed are building emotional resourcefulness: nurturing children and families in disability issues; and renewing spirituality and Ubuntu in disability and development programmes. In conclusion, managing the paradoxes of disability, the creation of a new individual and collective identity, and the capacity to change are proposed as the way forward.     

Support and Access in Sports and Leisure Provision

This paper will look at different ways of enabling people with learning difficulties to engage in leisure opportunities: the Support Model and the Access Model. These models will be put in their social context and then critiqued.

The support model will be be contextualised in the theory of normalisation, access in disability theory. The support worker role will be shown to be useful in motivating people with learning difficlties into new activities, as well as having a protecting element, and unwittingly, disguise the level of discrimination people with learning difficulties are subject to.

The access worker role will be shown to have strengths in understanding discrimi nation. With this analysis, it has the potential to dismantle disabling practices. However, the needs of people with learning difficulties have ramifications for disability theory. In practice, that means that ideas of self-advocacy need to be taken on board.

Through interviews with sports personnel, social workers and people with learning difficulties, the implications of creating fully comprehensive access will be examined. I will conclude that both effective support and comprehensive access must be in place before people with learning difficulties are able to make a meaningful choice as to how they are enabled to participate in sports. It is only at that point of choice that the two models become complementary rather than competing discourses of provision.     

Disablement, Disability and the Nigerian Society

This paper seeks to examine the question of disability in developing countries, particularly Nigeria. Most of the diseases causing disabilities are preventable. Many of these are infections which could be prevented with medical care.

The perception of handicapping conditions by most Nigerians it is argued, are greatly influenced by myth and superstition, which in turn influences the negative attitude of people towards disabled people.

The lack of medical facilities has contributed to the spread of common diseases which otherwise would have been controlled or eradicated, as is the case in developed countries like Britain and America.

Rights of disabled people are emphasized. This includes the right to an education and the right of access into buildings. Fortunately, there are moves towards the attainment of these basic rights in various sectors, particularly the University of Jos which has the largest concentration of blind students in one single institution of higher learning.     

'Learning Difficulties', the Social Model of Disability and Impairment: Challenging epistemologies

Critical researchers enter into an investigation with their assumptions on the table, so no one is confused concerning the epistemological and political baggage they bring with them to the research site (Kincheloe & McLaren, 1998, p. 265). A theory of disability as oppression recognises and, in the present context, emphasies the social origins of impairment. (Abberley, 1987, in Barton and Oliver, 1997, p176, my emphasis.) Identification with the label of 'learning difficulties' has contradictory personal and political implications for people so-labelled. While this identification has allowed people to organise collectively through the self-advocacy movement, pervasive understandings of 'learning difficulties' that permeate many societal settings tend to be framed in ways that directly confirm a personal tragedy model of disability and impairment. This paper argues for a reconsideration of impairment in relation to 'learning difficulties', to challenge pervasive assumptions in relation to 'learning difficulties' - at the level of epistemology - and to construct four inclusive epistemological foundations . The first, deconstructing impairment , draws upon a body of literature that has exposed the social nature of diagnostic criteria and destabilised naturalised notions of 'learning difficulties'. The second, impairment, as storied , brings in the accounts of people with 'learning difficulties' that locate impairment in, and as, personal and social narratives. Thirdly, reculturising impairment highlights emergent resilient cultures of people with 'learning difficulties' that re-culturise impairment. Fourthly, epistemological impacts , grounds the analysis by calling for an attention to the ways in which assumptions about the origins of 'learning difficulties' impact upon the treatment of people so-labelled.     

Enhancing the Social Relevance of Evaluation Practice

We argue that the social relevance of evaluation research is dependent upon two issues: the extent which evaluation practice reflects the values underlying social policies and the political reality of the policy implementation process. The evaluation of community based residential services should, therefore, reflect those values implicit in the formulation and implementation of the policy of 'deinstitutionalisation'.

Evaluation strategies are outlined that focus upon: (1) evaluating the extent to which the residential environment reflects the values of the surrounding culture, (2) quantifying the extent to which service users are actually living in the 'community', and (3) assessing outcomes significant to the quality of life of service users.     

Differences,Conflations and Foundations: The limits to 'accurate' theoretical representation of disabled people's experience?

This article proposes that current approaches to theorising disability as a form of social oppression and their relationship to disabled people's experiences are hampered by a modernist conceptual framework, which is increasingly at odds with the contemporary social world and with developments in theory-making as a whole. In order to bring disability theory closer to the lives of disabled people and the politics of new social movements, it is argued that the conceptual underpinnings of theory must be broadened beyond their current focus on structures, which view differences in terms of delimiting boundaries to one which includes an awareness of the relational, mediatory and performative role of discourse, and the increasing importance of local knowledges in shaping the social and political world.     

Disability Culture and Cultural Competency in Social Work

Despite recognition of the importance of cultural and social diversity in social work education and practice there is a dearth of social work literature related to disability culture. A review of disability studies literature indicates that the disabled people's movement already affirms and celebrates the existence of disability culture as characterized by several agreed upon assumptions: disability culture is cross-cultural; it emerged out of a disability arts movement and its positive portrayal of disabled people; it is not just a shared experience of oppression but includes art, humour, history, evolving language and beliefs, values and strategies for surviving and thriving. Essentialist concepts of culture, as represented in assimilationist and pluralist social work approaches, provide social workers with the false belief that there are cultural competencies that one can develop that are sufficient to become more culturally sensitive. However, analysis of the critical theory underpinning disability culture demonstrates that an understanding of cultural politics is fundamental to social work education if it is to support the work of the disabled people's movement in demystifying and deconstructing the norms, discourses and practices of dominant culture which are represented as neutral and universal.     

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.     

'Orange in a World of Apples': the voices of albinism

Albinism is a rare genetic condition that affects the pigmentation of the retina, hair and skin. Consequently, people with albinism world-wide experience the stigma and negative repercussions of an unconventional physical appearance, as well as a visual impairment. The medical literature has focused extensively on the genetics of albinism amongst animals, but it has been relatively under-studied and ignored in sociology. People with albinism have rarely had the opportunity to tell their stories; to tell their sorrows and their triumphs. This paper attempts to remedy this failure in social science.

In-depth interviews were conducted with seven women and five men, living in various countries globally. The study is framed around Erving Goffman's theory of stigma and 'spoiled identity', as well as the more recent Disability Studies that stresses 'the normals' as being the 'identity spoilers' or the 'problem'. The participants revealed victimisation from various sources including students, teachers, employers, colleagues, strangers and the medical profession. Focus is placed on the strategies that respondents have devised in coping with these adversities. The results identify eight principal methods of reaction and response to the discrimination against people with albinism.

These eight different strategies of resistance to the stigmatisation of albinism are essential elements of personal change and even, possibly, social change. This paper quotes respondents' own words. Such methodology offers the chance for people with albinism to voice their experiences, and for us researchers to listen and learn.     

Women with Disabilities: Abortion and Liberation

In this, the United Nations Decade of the Disabled, much is being done to improve the lives of those with disabilities, and to enable them to participate as equals in the everyday life of their communities.

At the same time, however, more and more technological 'advances' are being deployed to detect handicap in the unborn, with the aim of killing as many of them as possible before birth.

Feminists, though accustomed to fighting for the emancipation of women, are failing to address this incongruous situation, and the double discrimination faced by women with disabilities. This is partly due to the fact that they tend to regard abortion as an unequivocal 'right'.

I will argue that far from being a right, abortion underlines women's oppression and is counter-productive to women in general, and to disabled women in particular.     

Sustaining Democracy: Localization,Globalization, and Feminist Praxis

Following contemporary discussions of environmental sustainability, I view sustainable democracy as an approach that remains open to diversity, promotes well‐being for all social actors, and advances social justice. The notion of sustaining democracy that I adopt foregrounds everyday practical and participatory strategies that are self‐consciously tied to a vision of the future which will be more economically equitable, peaceful, inclusive, and socially just. However, I argue, a political vision cannot be enacted without an epistemological articulation that informs political practice. Feminist praxis contains, in its epistemological formulation, a reflexive process by which lessons from past activist engagements are incorporated into contemporary efforts, which, in turn, are further reflected upon in changing political and cultural contexts. Feminist praxis is further deepened by incorporating epistemological insights from feminist theories of intersectionality to inform its political methodology. I illustrate the possibilities of intersectional feminist praxis for sustaining democratic practice with attention to five different dimensions: strategies for inclusion, methods of empowerment, countering power imbalances, organizing across differences, and processes of reflexivity.     

The 'Normal' and the Monstrous in Disability Research

Based on the key assumptions of a critical social research commited to a fairer society and that all knowledge is political, this paper highlights the way in which 'normal' research whether quantitative or qualitative can regulate and discipline research and effectively conceal important knowledge, and in this way control (discipline) substantive research outcomes. The concept of 'monstrous' can refer to repressed issues of disability, reprehensible social conditions of disability and research processes. The paper contributes to the ongoing discussion of doing and writing disability research by revisiting research as politics, exposing the meeting point of modern and post-modern approaches, and proposing a stronger materiality, and reintegration of theory and practice. The implications are that we need a personalised approach to explore critically across disciplinary boundaries, beyond unilateral discourse and into assumed knowledge. The paper discusses some key approaches, which when taken together support critical exploration.     

Politics and Celebrity: A Sociological Understanding

Many social commentators have denounced the election of entertainment celebrities such as Arnold Schwarzenegger, Jesse Venture, and Al Franken to political offices as indicative of American democracy’s collapse, treating the political victories by these celebrities as evidence of America’s preference for entertainment over political deliberation. This essay reviews the scholarly literature on celebrity and politics to provide a better understanding of this important topic. As the literature demonstrates, this conflation of celebrity and politics is not a recent phenomenon, as politicians have long employed dramaturgical elements to mobilize constituencies. Indeed, celebrities and politicians share many similarities. Both must construct public personalities appealing to their audiences and employ similar actors and strategies to help create these personalities. While some scholars working in this field agree with the concern that celebrity’s presence in politics inhibits serious political discourse, other scholars contend that the use of celebrity performances by politicians may actually attract a wider segment of society to meaningfully participate in politics. The essay concludes by suggesting that future works in this area should adopt a cultural sociology framework to empirically study the meaning of celebrity for different social groups in order to gain a stronger understanding of celebrity’s sociopolitical impact.     

Positivism,ethics and politics in Africa

Despite the fact that the study of African politics is dominated by ethical postures, as can be seen with the self-proclaimed qualifications of African states and leaders, the debate on ethics per se is not common. The first challenge of this article is to address ethics as an entry point for African political studies. The second challenge is epistemological. It is related to my efforts to examine values and ideals as facts that should be considered seriously in political science. Therefore, positivism is not incompatible with values and ideals. They are part of the political universe. In this regard, African politics shows the symbolic triumph of democratic ethics. Current facts militate for the upholding of those values.     

The Politics of Disability: A New Approach

This paper will argue that the politics of disability has, so far, been narrowly conceived as part of the processes of party and pressure group activity. These approaches will be examined critically and it will be suggested that they are unlikely to produce substantial political gains in terms of ensuring the full participation of disabled people in society or contribute significantly to improving the quality of their lives. Finally, it will be argued that the politics of disability can only be properly understood as part of the newly emergent social movements of all kinds and it is only within this context that their real significance can be grasped.     

Enacting third-party certification: A case study of science and politics in organic shrimp certification

As third-party certification has become a prominent governance mechanism, conflicting understandings of it have emerged. Proponents advance third-party certification as a technical and objective governance mechanism, while critics argue that politics and relations of power characterize it. We reject this dichotomization both in terms of how TPC is understood, as well as understandings of science and politics. Drawing on science and technology studies, we argue that third-party certification is simultaneously science-based and political, and that both science and politics entail social and technical practices. Using a case study of an organic shrimp project in Indonesia, we examine the development and enforcement of standards. Three important findings emerge from our analysis. First, the development and enforcement of standards in a third-party certified project is partially dependent on the extent to which the interests and realities of all stakeholders are successfully translated and enrolled. Second, differences between actors in a third-party certified project are not just epistemological, but also ontological. Thus, overcoming differences in TPC entails reconciling not only interests and knowledge, but also material realities. Third, TPC is performative in that if the standards are to be adhered to, enrollment and translation have to be continuous practices. In concluding, we argue that a science and technology analysis points to the need not only to democratize TPC, but also diversify the epistemological basis of standards, and that efforts to ensure compliance need to go beyond audits.     

The Government of Disability: economics and power in welfare and work

The term government of disability refers to the ways that the lived experiences of people with accredited impairments are contextualised by economics and power in welfare and work. This paper explores how far a multiple perspective that develops a framework of the government of disability and the ontological ambiguity of impairment can take us towards contemporary understandings of disability, impairment and change in the UK.

The term the ontological ambiguity of impairment describes the ways that understandings of impairment have become more ambiguous, contributing to greater insecurities and fragmentation because of key changes in the government of disability. However, I argue that wider explanations of economic and power relationships are also necessary to develop a critical perspective of the contemporary government of disability, economics, and power in welfare and work.     

Disability and the Dialectics of Difference

This paper re-theorises disability by asking the following question: within what historical, social, economic and political conditions does disability as an analytic of difference get constructed in a dialectical relationship with gender, class, caste and race? To respond to this question, I will first offer a materialist reading of the category of disability. I will then situate this discussion in an ethnographic study of a voluntary organisation in South India which provides residential as well as rehabilitational services for disabled children. Finally, I will discuss the politics of gendered 'caring work' and its implications for the continued production of marginalised difference. In doing this, I will thus demonstrate how disability can be re-understood as an ideological condition which is also structured by the same exploitative material conditions of capitalism as are race, caste, class and gender.