Overprotection in the lives of people with intellectual disability in Malta: knowing what is control and what is enabling support

A study of overprotection in the lives of persons with intellectual disability in Malta was carried out on the principles of inclusive research. Focus groups were held with people with intellectual disability, parents of people with intellectual disability, and those working with persons with intellectual disability. Overprotection is a disabling barrier. Its effects were identified in employment, leisure time, intimate relationships, and the use of public transport, money, and mobile phones. People with intellectual disability who experience overprotection live very structured lives. They cannot develop their skills, abilities, and potential. Furthermore, they cannot live their life on their own terms, but on terms determined by others. This creates a sustained dependence on others, especially the family. It is important that a balance is achieved between protection and enabling support. Persons with intellectual disability should be given the support they need to express their wishes and act on them.     

Self-advocates have the last say on friendship

This study reports the friendship experiences and aspirations of adults with intellectual disabilities. The findings of a larger study were reviewed by an expert group of self-advocates with intellectual disability. The expert group confirmed some of the interpretation of the original data and expanded on issues. Friendship is established as an issue of concern among adults with intellectual disability. Consequently, policy-makers and service providers need to be intentional about providing support for friendships. Participants asserted a positive self-identity of being a person with intellectual disability and how this could be a basis for friendship. Also, people with intellectual disability demonstrated how they should be considered experts in their own life experience and how they can be effectively included in the formulation, implementation, analysis and review of research.     

Narratives of Leisure: recreating the self

Utilising insights from narrative theory this paper explores the role of narrative in the everyday leisure experiences of people with a mild intellectual disability. Drawing on our experiences with an Australian leisure service Live it UP! we develop the connection between leisure and storytelling in order to open up an innovative approach to working with individuals. The stories of people's capabilities that we draw on run counter to a dominant cultural story of lack associated with disability. Through a post-structuralist analysis we argue that narratives of leisure are a powerful social medium with the potential to produce change in an individual's life and immediate social relationships. Such an understanding is crucial for the development of alternative leisure support services which identify the person's needs, challenging the social positioning of people with an intellectual disability.     

Ethical challenges of life story research with ex‐prisoners with intellectual disability

This paper outlines the ethical considerations when engaging in life story research with ex‐prisoners with intellectual disability. Based on a study conducted in Queensland, Australia, the authors explore some of the challenges that have arisen through the lens of principle‐based ethics. The significant disadvantage experienced by ex‐prisoners with intellectual disability warrants further attention by social researchers, and care must be taken not to further harm this group through the research process. Issues pertaining to the broad ethical concepts of integrity, justice, respect for persons and beneficence are examined to identify the degree to which they can guide the actions of the life story researcher. Examples are given as to how the researcher responded to difficulties as they arose and the authors discuss ways forward from a principle‐based approach.     

‘He was a secret’: family narratives and the institutionalization of people with intellectual disabilities

This article examines family narratives concerning the existence of an institutionalized family member with an intellectual disability. A research study investigating the experiences of institutional survivors and members of their families in post-World War II Ontario, Canada reveals ambiguous family narratives in which the story of an institutionalized family member with an intellectual disability was absent or uncertain. Secretive family narratives and their impact on family life are discussed from the perspectives of siblings of institutional survivors. Drawing from narrative enquiry literature, the potential repercussions of false or ambiguous narratives on the lives of people with intellectual disabilities are also examined.     

Persons with profound intellectual disability and their right to sex

This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.     

Belonging: women living with intellectual disabilities and experiences of domestic violence

Women with an intellectual disability are under-represented in domestic violence research, yet they are one of the most vulnerable groups who are at risk of violence and abuse. This article aims to contribute to the domestic violence field by reporting on a narrative dialogic performative study, which utilised a feminist poststructural perspective to explore significant relationships and the concept of belonging in the lives of women with a mild intellectual disability. Four in-depth narrative interviews were conducted. The study found that the women shared similar stories of devaluation and rejection in childhood and hence the women’s search for belonging contributed to their vulnerability to exploitation and abuse in domestic violence relationships. The paper argues that gendered discourses and constructions of intellectual disability regulate domestic violence as a personal problem or way of life for women with intellectual disabilities.     

A rights-based conceptual framework for the social inclusion of children and young persons with an intellectual disability

There is a basic principle that all children and young persons with intellectual disabilities should be able to enjoy citizenship on an equal basis with others. This includes enjoying personal dignity and exercising choice, control and freedom in social, community and cultural life, in keeping with their individual lifestyle preferences and aspirations. There is a need for a stronger human rights narrative to achieve this. This article identifies a conceptual framework for a rights-based approach to the integration of children and young persons with disabilities. Seven components of such a framework are identified: citizenship and social inclusion; recognition; agency; voice; capabilities; equality; and self-realisation. This framework was developed as part of an Irish case study involving consultation with young persons with intellectual disabilities, their parents or guardians and professional staff delivering support services. The rights of children/young persons with intellectual disabilities are essentially those of children generally. While this principle may be obvious in many respects, its implementation presents significant challenges. The need for a transformative narrative and its components are outlined.     

The blurred edges of intellectual disability

The label of ‘intellectual disability’ can be a very blurred concept, because for those on the borders their label often arises from the interaction of the individual with their environment, from their socio-economic status, and from the social role which they choose to undertake. This paper explores the contested notion of intellectual disability in the context of people who have been in trouble with the law in England, and contrasts their situation with that of people who have been protected by best interests decisions under the Mental Capacity Act (England and Wales). People who are on the ‘borderline’ of having an intellectual disability, like any citizens, have a range of intersecting identities. Drawing on the notions of ‘interactional’ disability theory, we reflect on the shifting, relative nature of intellectual disability, and the need for the law to focus on support needs, rather than on impairment.     

‘I know,I can,I will try’: youths and adults with intellectual disabilities in Sweden using information and communication technology in their everyday life

This study introduces how technology and humans are part of relationships that influence agency among people with disabilities. It aims to focus attention on the use of, and access to, information and communication technology (ICT), and agency among youths and adults with intellectual disabilities. The study draws on empirical research conducted with youths and adults with intellectual disabilities, as well as staff at a day centre. It shows that by drawing upon interests, previous experiences, and cooperating in ICT activities the participants’ agency changed. Also, it shows how disability is relational and how it can be influenced by ICT. An interdisciplinary approach is adopted to interpret the findings and to explore: How do people of different ages with intellectual disabilities experience the use of ICT in their everyday lives? Are people with intellectual disabilities able to influence their level of activity by using ICT? And if so, in what ways?     

Unanticipated ethical issues in a participatory research project with individuals with intellectual disability

The conduct of a participatory research investigation into the everyday literacy of adults with intellectual disability within the context of a PhD thesis highlighted issues related to the ethics of participatory research and the need to revisit and reconsider ethical guidelines around working with individuals with intellectual disability. Tensions were identified between participatory research ideology and the reality of research experiences, with additional issues arising due to disability in the first author.     

Reason,grace and charity: Augustine and the impact of church doctrine on the construction of intellectual disability

This paper examines how early church doctrine influenced the construction of and response to intellectual disability. Though the main focus of the paper is on intellectual disability, much of the discussion is more broadly relevant to other types of impairments and human differences. The vehicle for this examination is the work of the key figure in the development and codification of church doctrine, Augustine, Bishop of Hippo (354–430 CE). The paper concludes that while church doctrine mitigated the stark association of reason and human value found in classical Greek thought, it did not engender an attitude of equality in this world. The ideas of grace and the ‘divine plan’, while opening up a limited space for acceptance and broad equality in the eyes of God, also reinforced and legitimated an inferior position in this world, leaving those considered to have an intellectual disability on the margins of social life and subject to a charity ultimately undertaken for the salvation of the giver, rather than for the welfare of the recipient. Subsidiary themes related to the construction of intellectual disability, such as ‘object lessons to the wise’ or as ‘monsters’, use as sources of amusement, innocence and their association with children and the charity ethic, are also examined.     

Discriminative Assumptions of Utilitarian Bioethics Regarding Individuals with Intellectual Disabilities

'Bioutilitarianism', which is a position presented by the well-known utilitarian philosophers Helga Kuhse, James Rachels and Peter Singer, views the potential existence of infants with intellectual disabilities as less valuable than the existence of 'normal' infants. I will argue that their arguments are based on misleading and biased information about the characteristics of individuals with intellectual disabilities and their quality of life. By ignoring the social constructionist dimension of disability the bioutilitarians make questionable moral conclusions. Also, the underlying assumption of their position is an 'intelligist' intuition, namely that intellectually 'normal' human beings are morally more valuable than human beings with intellectual disabilities. I contend that there is no reasonable basis for viewing infants with intellectual disabilities as being less entitled to life than 'normal' infants or for considering people with intellectual disabilities as less valuable than 'normal' people.     

西方残障身份发展理论述评及本土化思考

积极的残障身份认同对残障者本身具有重要意义,残障身份发展是残障者实现身份认同的路径,理解残障身份发展的过程也可以让残疾人工作者更好地为残障者提供教育、康复等相关服务。本文通过梳理较为典型的西方残障身份发展理论,结合国内残障身份相关研究及本土社会文化背景展开讨论。文章认为,在西方残障身份发展理论框架下,残障者形成积极身份认同的关键在于认同并融入一套在残障社区内共享的残障文化,而在我国社会文化背景下,目前并没有一套成体系的残障文化,残障者也难以体会残障的文化身份感,国内残障者的身份认同缺少本土残障文化依靠。     

Penny for Your Thoughts: Beggars and the Exercise of Morality in Daily Life1

Urban sociology has tended to study interactions between passersby and “street persons” with an emphasis on the ways street persons become bothersome, harassing, or dangerous. This article moves away from the focus on the ways interactions in public go awry and focuses on how individuals account for the mundane, everyday exchanges they have with strangers who seek their help. Based on interview data (N = 31) and qualitative analysis of data from an Internet survey (N = 110), this article suggests that the presence of beggars does not inherently symbolize urban decay to passersby and does not necessarily elicit anxiety, but instead provides a valuable texture of urban life. Further, the article argues that individuals, when justifying their responses to requests for help from needy persons (beggars) in urban spaces, use a variety of cultural strategies to maintain their perception of themselves as moral persons, both when they choose to help and when they refuse. Drawing from these findings, the article suggests that urban sociology and the sociology of risk would benefit from sensitizing their studies of public interactions to the diverse meanings individuals assign to them, rather than presupposing annoyance, anxiety, or fear as their predominant characteristic.     

Exploring the impact of health inequalities on the health of adults with intellectual disability from their perspective

Across every indicator of health inequality, adults with intellectual disability are disadvantaged. However, first-hand accounts from adults with intellectual disability exploring the impact health inequalities have for their health and are absent from the literature. The research was underpinned by a participatory approach, involving Men with intellectual disability as members of a steering group and through 20 interviews. Thematic analysis revealed how low income and reduced employment had a negative impact on the men’s physical and psychological health. New findings show how living in deprived areas exposed men to constant threats to their safety with an adverse effect on their health.     

Life histories as counter-narratives against dominant and negative stereotypes about people with intellectual disabilities

The history of intellectual disabilities is largely a story of discrimination and social exclusion portraying people with intellectual disability as abnormal and inferior. This article describes a particular methodological approach to inclusive life history research with a small group of women with intellectual disabilities in Iceland. The article documents how, through a four-year collaborative research process, the life histories became counter-narratives to dominant historical beliefs and stereotypes. In addition to the personal empowerment of the women and the construction of a collective memory, this project has also resulted in public sharing of their stories through speaking up and giving presentations, and thus potentially also changing the historical memory.     

Independence, Participation, and the Meaning of Intellectual Ability

This article presents a non-speaking person's perspectives on independence and the implications of newfound communication abilities for her participation in the world and upon the meaning of intellectual ability. The person with the communication disability also has autism and, early in her life, was classified by school officials as 'severely retarded'. The narrative focuses especially on the concepts of independence, participation, and intellectual competence or intellectual performance, and their relationship to the concepts of democracy, freedom, and identity, all from a non-essentialist perspective. In addition, the article addresses practical questions about how, from her perspective, the non-speaking person developed the ability to communicate without physical support.     

Disability in the news: a reconsideration of reading

By making use of a disability studies perspective informed by phenomenology, this paper interrogates the social process of reading news articles that depict disability as if it is only limit. The paper begins from my experience of reading an article that assumes reader-willingness to imagine disability as a kind of limit without possibility, without life. I go on to consider how the meaning of disability is actually produced by normative forms of cultural perception that recognize certain bodies as a kind of negation. Reading, a common mode of perception within literate western cultures, is used to problematize how mainstream media configures embodiment. Finally, the paper raises the ever present possibility that the ways in which impaired bodies are typically limited may contain the possibility of alternatives that disturb and re-make the everyday modes of perceiving disability.     

Disability Studies and Phenomenology: the carnal politics of everyday life

This paper is an attempt to develop a sociology of impairment and to theorise embodiment in the lebenswelt. Disability studies has failed to address adequately the fundamental issue of bodily agency. The impaired body is represented as a passive recipient of social forces. Such a conception of the body is losing ground within social theory. This paper attempts to overcome disability studies' disembodied view of disability by utilising a phenomenological concept of embodiment. Phenomenology offers the opportunity to transcend the traditional Cartesian dualisms which posit the body as a passive precultural object. However, such a view, when extended to impairment is empty of political content since phenomenological analyses have relied upon medicalised and individualised understandings of disability. In order to counter the disablism evident in phenomenology on the one side and disability studies' disembodied view of disability on the other, we argue for a radical phenomenological approach to the (impaired) body. To demonstrate the vitality of such an approach, we also attempt to deploy Leders' (1990) concept of dys-appearance as a means of analysing the carnal politics of everyday life.