Making disability conferences more actively inclusive

In this article I explore how generic disability conferences can become more inclusive of participants with intellectual disability. Increased inclusivity entails adapting to the support needs of people with intellectual disability, in line with the principles and practice of inclusive research. In the article I consider three specific areas where there can be more inclusion – access to information related to the conference, access to knowledge imparted during the conference, and financial issues. While many good practices have been developed in these areas, it is important to ensure that inclusion is catered for in a systematic and pro-active manner, so that people with intellectual disability have increasingly more meaningful and active roles within disability studies and disability research.     

The ideology of neuroscience and intellectual disability: reconstituting the ‘disordered’ brain

During the last two or three decades, neuroscience has changed how we understand brain functioning. This shift, which is re-conceptualizing the relationship between the materiality of the brain and consciousness, is bound to have implications for intellectual disability, which is commonly seen as a condition of the brain. At present, examinations of intellectual disability that deploy techniques and concepts from neuroscience constitute a growing research field that has been welcomed in some quarters of the disability research community. The purpose of this article is to urge for caution as regards this development. I argue that the neuroscience of intellectual disability is embodying ideological propositions that need to be problematized. By theorizing the relationship between biology and politics and examining neuroscientific publications on intellectual disability, I argue that this strand of research is underpinned by a discursive division between normal and pathological, that it therefore constitutes a continuation of understanding intellectual disability as a ‘disorder’ and that any firm separation between the ‘nature’ of intellectual disability and processes of power is inherently problematic. To be able to critically approach the neuroscience of intellectual disability, it is vital that disability researchers problematize the relationship between biology and politics.     

‘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?     

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.     

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.     

Staff responses to age‐related health changes in people with an intellectual disability in group homes

The purpose of this study was to explore how supervisors in group homes caring for people with intellectual disability responded to the development of age‐related health changes in their residents. Ten group home supervisors working in the disability sector were interviewed once. Data were analysed using Dimensional Analysis. The study identified several factors related to whether a resident could stay ‘at home’ or would need to be moved to residential aged care (nursing home) including: nature and extent of group home resources, group home staff comfort with residents’ health changes, staff skill at navigating the intersection between the disability and ageing sectors, and the supervisor’s philosophy of care. The ability of older people with an intellectual disability to ‘age in place’ is affected by staff knowledge about and comfort with age‐related illnesses, staff skills at navigating formal services, staffing flexibility, and the philosophy of group home supervisors. Despite the growing international concern for the rights of people with disability, particularly in relation to decision making, questions about the older person’s choice of residence and participation in decision making about what was best for them, were almost nonexistent. Rather, decisions were made based on what was considered to be in ‘the best interest’.     

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.     

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.     

Contrasting perspectives of parents and service providers on respite care in Queensland,Australia

Abstract

Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home.     

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.     

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.     

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.     

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.     

‘Being friends means helping each other,making coffee for each other’: reciprocity in the friendships of people with intellectual disability

Friendship is an issue of concern for many people with intellectual disability. The aim of the research presented in this paper is to understand how people with intellectual disability experience friendship and what friendship means for them. A focus group was held with seven people with intellectual disability, who are members of a self-advocacy group. An inductive thematic analysis approach was used to analyse the data. The people that the research participants identified as their friends were fellow self-advocates, family members, support workers and co-workers. They also identified behaviours and actions that foster friendship and those that undermine it. The analysis shows how the research participants identified as friendships those relationships which had an element of reciprocity, while linking a lack of reciprocity with the absence of friendship. It is very important for non-disabled people to understand the perspectives of people with intellectual disability they live and work with.     

It takes a sister: sisterhood and Black womanhood in families of people with intellectual and developmental disabilities

This study explores the sibling relationships of Black women with sisters who have intellectual and developmental disabilities in the southeast United States including Georgia, South Carolina, Florida, and Louisiana. The researchers used disability/critical race theory to understand the perceptions and stigmas associated with disability relating to social, cultural, and psychological structures within sibling relationships. Results were captured in four themes: cultural perceptions of family and extended kin; sibling relationships; beliefs about the self as a sister; and siblings’ identities. The findings from this study will contribute to research in disability studies by providing a better understanding of the intersections of identities and the familial experiences of diverse families.     

The changing face of the ‘good mother’: trends in research into families with a child with intellectual disability,and some concerns

This article reviews changing perspectives in recent social science research into families of children with intellectual disability. These latest trends emphasise family resilience, adaptation, and transformation, with the focus predominantly on mothers and their ability to psychologically adjust to their caring challenges. A concern is that by concentrating on the adaptive strategies of mothers, researchers risk minimising the socio-political dimensions of this experience. The theme of the ‘good mother’ figures strongly in this research, linked to the limiting socio-cultural narratives available to mothers of children with intellectual disability that, it is argued, may condone their continuing marginalisation.     

Qualitative inquiry of sibling relationships: reinforcement of disability devaluation through the exclusion of voices

People with disabilities share a history and culture of marginalization and oppression. In disability studies, disability has been re-defined as an inability or limitation in performance of the roles and tasks expected of individuals within society which excludes people from becoming full participants in social, cultural, and political affairs. Disability research has traditionally been ‘on’ rather than ‘with’ people with disabilities. This article examines how qualitative sibling disability research has been conducted, with a particular focus on the exclusion of people with disabilities.     

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.     

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.