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.     

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.     

The care manager’s dilemma: balancing human rights with risk management under the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003

In New Zealand, the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003 provides diversion for persons with an intellectual disability who have been charged with, or convicted of, a criminal offence. This unique Act moves the responsibility for such ‘care recipients’ from the criminal justice system to a disability sector that values a social model of disability and philosophies of autonomy, choice and normalisation. This research identified dilemmas faced by care managers legally responsible for care recipients. Care managers experienced: tension between imperatives of risk management, rehabilitation and human rights; role ambiguity between ‘custodian’ or ‘therapist’; philosophical incongruity within their services; and ethical dilemmas over decisions to lengthen care orders. The changing care recipient population has intensified these dilemmas: services must now adapt to the needs of young, street-wise people with alcohol and drug problems and histories of criminal behaviour. The article makes recommendations about how these dilemmas can be addressed.     

Politics of geographic exclusion: deinstitutionalization,hegemony and persons with intellectual disability in Israel

Deinstitutionalization is a core policy for the development of services for people with intellectual disabilities (ID) in western countries. Nonetheless, although a western country, deinstitutionalization is not well advanced in Israel. In order to shed light on this phenomenon, we explore the hegemony of ID as reflected in Israeli legislation. The analysis shows a biomedical hegemony; ID is depicted as a form of medical and social deviance. Israel’s legislation reflects paternalistic views of persons with ID, who are largely seen as vulnerable objects of pity, to be cared for and protected.     

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.     

The invisibility of disability for homeless youth

A largely unexplored complexity in the lives of youth who have experienced homeless is the presence of intellectual, developmental and/or learning disabilities. Although emerging research shows that youth with cognitive disabilities are more likely to become homeless and that rates of cognitive disabilities are higher among the homeless population than the population in general, exploring the intersection of disability and homelessness for youth has not been a priority. In this study, a critical disability and systems failure lens is brought to bear on the vulnerability of youth who experience this intersection. Based on interviews with key informants in the disability, homelessness, education, employment and child welfare sectors in three sites in Ontario, Canada, the invisibility of disability among homeless youth is brought to light. We explore the ways youth with a disability in the homelessness sector are made vulnerable, the insurmountable barriers to getting access to the requisite assessment for disability services and the siloed nature of the homelessness and disability service sectors. An argument is made that “working outside the box” to assist youth to navigate significant system disjunctures is insufficient.     

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

The dynamics of support over time in the intentional support networks of nine people with intellectual disability

This paper describes the dynamics of support observed in the networks of nine adults with intellectual disability, developed by families who had committed to achieving a ‘good life’ for this person. Network members, including the person with a disability, participated in this longitudinal ethnographic study. Three principles that underpinned their work were positive and respectful relationships, mentorship and providing opportunities and expectations. Participants worked actively with other network members to develop higher levels of autonomy and social participation.     

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.     

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.     

Counting inclusion with Chantal Mouffe: a radical democratic approach to intellectual disability research

As mandates for social inclusion of people with intellectual disabilities remain unfulfilled, many scholars question whether the concept of inclusion is to blame. Critics worry that quantitative measurements of inclusion miss what should count: a meaningful life gained from a sense of belonging. We argue that both concepts – inclusion and belonging – embody a communitarian ethos in which citizens mirror the values of their community. In contrast, Chantal Mouffe’s radical democratic approach to inclusion emphasizes the importance of difference and the inevitability of exclusion. Mouffe thus offers a way to broaden our approach to social inclusion in the twenty-first century.     

Interviewing victims of sexual abuse with an intellectual disability: a dutch single case study

The approaching to use with people with an intellectual disability who are (suspected) victims of sexual abuse is a challenge for social professionals. Being at the mercy of professional facilities, the victims are in a vulnerable position. They have limited capacities to defend themselves against the intimidations of perpetrators and to deal with the consequences of the terrifying happenings. Finally, sexual abuse is a criminal offence. Much depends on the quality of the interviews. In the Dutch practice of forensic reactions to (suspected) sexual abuse of people with an intellectual disability, experience has been acquired with different types of interviewing.

With the help of a single case study between a health professional and a victim, these forms of interviewing are demonstrated. The professional pursuit is to let the client disclose what has happened in their own words. The study shows that in social health and welfare practices the professional task is to navigate between, on the one hand, the communicative space for the client to provide free recall and, on the other hand, the need to provide help to clients with an intellectual disability to verbalize inner cognitions and emotions.     

The identities and social roles of people with an intellectual disability: challenging dominant cultural worldviews,values and mythologies

Intellectual disability is commonly conceptualised as stigmatised identity with which one has to live. However, within the literature the notion of a damaged identity is contested. The aim of this research was to explore the social construction of intellectual disability, with an emphasis on the identities and social roles of people with an intellectual disability. Informed by a contextualist perspective, this research was conducted within a participatory framework. The co-researchers involved in this research were 18 members of an advocacy agency. Photovoice and conversational interviewing were used to collect data and causal layered analysis was used to deconstruct the data. Analysis of the interactions that emerged across the causal layers revealed a complex dynamic of worldviews which served to construct people with an intellectual disability as incompetent, inherently different and not quite human. For genuine, transformative change to occur, developing an awareness and understanding of social processes, such as dehumanisation, is crucial.     

The construction of intellectual disability by parents and teachers

This study examines how disability is constructed by significant adults in the lives of young people with intellectual disability. Specifically, we are examined how parents of those affected by intellectual disability and teachers in special schools construct intellectual disability in talk. Using focus group interviews, we examined whether stigma might be recreated or sustained within the family and school settings of those affected by intellectual disability. Parents and school staff constructed disability as negative, articulating difference from ‘the norm’, which was claimed to drive social isolation for affected young people. There was also evidence that parents and teachers attributed less agency to young people affected by intellectual disability. Discussion orients to how parents and teachers, see themselves as advocates for those with intellectual disability highlight, whilst at the same time recreating pervasive and subtle distinctions between children with and without intellectual disability.     

Rights discourses in relation to education of people with intellectual disability: towards an ethics of care that enables participation

In this paper we argue that human rights approaches for intellectually disabled people have failed to recognise the complexity of rights claims made by and on behalf of this group. Drawing on a research project into discourses of education for intellectually disabled people in the Eastern Cape, South Africa we discern three rights discourses; namely, rights to full participation, rights to special services and rights to protection. These draw off a social model, a medical model and a protective model, respectively. We note that these discourses may be set up in contestation with each other. However, we argue that they can be seen as complementary if viewed within an ethics of care that enables participation. Within this conceptualisation, participation is viewed within relations of care but is subject to a critique that examines the role of context and disciplinary power in constructing dependency.     

Problems associated with choice and quality of life for an individual with intellectual disability: a personal assistant's reflexive ethnography

A gap exists between research and practice within the field of intellectual disability. In particular, researchers suggest that personal choice enhances quality of life. Following Bourdieu's suggestion to focus on improving the practice of theory rather than the theory of practice, this paper is a reflexive ethnography detailing my struggles to provide choice to an individual who, it turned out, cannot think in the ways necessary to make choices that would improve his subjective quality of life. A narrative is included with the hope of revealing social processes outside and within the field of intellectual disability and to provoke discussion regarding problems with choice and quality of life in the field.     

Advancing social inclusion in the neighbourhood for people with an intellectual disability: an exploration of the literature

The shift from segregated facilities to community settings did not automatically lead to social inclusion for people with an intellectual disability (ID). Policies are increasingly decentralized but little is known about the factors that are important to realize social inclusion in the neighbourhood. This literature study identifies five domains barriers and facilitators for social inclusion in the neighbourhood: individual characteristics, informal network, professional care, neighbourhood characteristics, and government policies. The findings suggest that social inclusion in the neighbourhood is a dynamic process that shows a series of complex interactions between environmental factors and personal characteristics to provide opportunities for people with an ID. It is recommended to include the perspectives of people with an ID and other neighbourhood residents in future research on social inclusion. Specific attention is needed for the role of neighbourhood social capital in achieving social inclusion in the neighbourhood.     

Citizens with learning disabilities and the right to vote

This paper asks, in the context of recent legislative changes, what can be done to support more citizens in England and Wales with learning disabilities to vote in national elections? This issue is addressed through (i) a review of recent disability access campaigns that have reported discrimination against, and the under‐representation of, adults with disabilities in UK elections; (ii) a review of recent research undertaken in the USA into the assessment of competence to vote and research undertaken in England that conclusively documents the under‐representation of voters with learning disabilities in the 2005 general election. It is proposed that a ‘functional approach’ to developing an individual's capacity to vote could help to fulfil Article 29 of the United Nations' Convention on the rights of persons with disabilities that gives all people the same political rights.     

Looking inside the bag of tools: creating research encounters with parents with an intellectual disability

This paper examines the development of fieldwork methodology in a study that investigated the parenting experiences and parent support needs of a group of parents with an intellectual disability. It considers the ways in which the original planning for the project changed as the fieldwork unfolded, requiring adaptations to our methodological expectations and in the process deepening our understanding of the phenomena we were studying and reinforcing for us the importance of relationships in fieldwork‐based research. Three themes in particular are considered that became central to this research: research relationships; safety for participants/positioning of the researcher; suspending assumptions about impairment and disability and influences on life experiences.     

Disrupting global disability frameworks: settler-colonialism and the geopolitics of disability in Palestine/Israel

In recent years, Israel has seen an increase in disability studies scholarship and disability rights activism. At the same time, critical disability studies scholars have begun calling attention to the role of colonization and neocolonial powers, too often obscured in disability studies work, in disabling oppressed nations. This article brings these critiques in conversation with disability studies scholarship regarding Occupied Palestine to argue that disability is inextricably intertwined with the settler-colonial project of the Israeli state. By highlighting the geopolitical production of disablement, this work suggests that social approaches to disability have largely effaced disability injustice rooted in geopolitical power imbalances.