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.     

Sibling Roles in the Lives of Older Group Home Residents with Intellectual Disability: Working with Staff to Safeguard Wellbeing

Abstract

When parents die, siblings of older people with intellectual disability are likely to take responsibility for oversight of their wellbeing and negotiation with formal support services. This study explored the roles siblings played in the lives of older people with intellectual disability who live in group homes, and the relationships between residents’ siblings and group home staff. The siblings of 13 group home residents and the 17 supervisory staff associated with these services were interviewed, initially face-to-face and then intermittently by phone over a period of three years. Data were analysed using an inductive analytical approach. Siblings valued the relationship with their brother or sister with intellectual disability and played a significant role in safeguarding their wellbeing. Sibling–staff relationships fluctuated over time, sometimes becoming tense and difficult. Few protocols guided these relationships. A principle-based framework could facilitate negotiation between staff and siblings about expectations of communication and decision making.     

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.     

‘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.     

‘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.     

‘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?     

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.     

Recruitment and consent of adults with intellectual disabilities in a classic grounded theory research study: ethical and methodological considerations

Researchers are required to provide opportunities for people with intellectual disabilities to be included in research which affects their lives. This paper reports on one research study inclusive of 12 adults with intellectual disabilities. Ethical and methodological realities of recruiting research participants and obtaining informed consent while enlisting a classic grounded theory methodology are discussed. The findings of this paper focus on building and maintaining trusting relationships with relevant gatekeepers and engaging in reasonable accommodations to support decision-making for and with adults with intellectual disabilities. This paper contributes to an understanding of how to apply for ethical approval, negotiate access to potential participants, enlist reasonable accommodations and obtain informed consent in the context of the methodological strictures of classic grounded theory methodology. Research projects need to be carefully planned making space for the development of empathic relationships with both the potential participants and also with the structures and services supports.     

Mobile technology in inclusive research: tools of empowerment

Inclusive research is an accepted approach when conducting research about individuals with disabilities. No studies have been published to date on using mobile technology to support people with intellectual disabilities as researchers. An inclusive research team of researchers with intellectual disabilities and academic researchers used mobile technology to support research skill acquisition. They conducted 15 joint research training sessions, followed by 10 research meetings. In order to discuss the experience of using iPads to support researchers with intellectual disabilities, the authors used a multiple-case study approach. Findings included the challenges and successes of mobile technology implementation. In conclusion, the iPads enhanced participation opportunities for the researchers with intellectual disabilities not only in the research, but also in other areas of their lives. This also brought to light the vulnerability of women with intellectual disabilities and the lack of control they often experience in their lives.     

Sounds of Silence: narrative research with inarticulate subjects

This article addresses the challenge of using narrative methods with people who have learning difficulties. Such informants present four particular interview problems: inarticulateness; unresponsiveness; a concrete frame of reference; and difficulties with the concept of time. The authors focus on the first two of these problems and argue that neither of them constitutes an insuperable barrier to people telling their story. Drawing on detailed interview material from an informant with learning difficulties, the authors set out to show in practical terms how these problems might be tackled, emphasising in particular the importance of being attentive to what goes unsaid. They conclude that researchers should put more emphasis on overcoming the barriers that impede the involvement of inarticulate subjects in narrative research instead of dwelling on their limitations as informants.     

A grounded theory of living a life with a physical disability in Taiwan

This study explores the experiences of disability for a number of Taiwanese adults with a physical disability. Using a grounded theory approach, their experiences of living a life with a physical disability were gained through in-depth interviews. The resulting grounded theory ‘it is more than just the impaired body’ presents the dynamic interactions between the participants and the context in which they were living their lives and how they managed their lives within that context. With its inclusion of the cultural dimension, a holistic way of understanding the daily lives of those who experience physical disability in Taiwan is provided.     

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.     

Practising partnership--participative inquiry with older people

This paper examines the importance of approaching research with minority groups of older people in an inclusive way. For older people, ageism is a key feature of the discrimination and marginalisation they experience, but some are excluded and marginalised further on the basis of their ethnicity and sexuality. The 'invisibility' of these groups poses a challenge to social workers and social work educators, as assumptions about their experiences and needs may be made which do not reflect the subjective experiences of these older people. The use of Participatory Action Research as a method of including service users in knowledge and theory development will be analysed, and a research proposal undertaken in partnership with a local voluntary agency will be explored. The importance for social work education of pursuing 'inclusive' methods of research so that service users have more power over knowledge produced about their lives, will be discussed.     

Who Shall Decide? The Relevance of Theory and Research to Decision-making by People with an Intellectual Disability

In the context of normalisation and rights recognition, capacity for decision-making by people with an intellectual disability has emerged as an important but potentially contentious issue. Although increased community integration has opened up many new options, opportunities for greater autonomy are still unnecessarily constrained. Perceptions of limited competence, the issue of who has control over choices, and organisational structures are some of the factors which influence the extent to which clients are able to make decisions. This paper argues that, in order to resolve these issues, decision-making by people with an intellectual disability should be studied within the broader context of psychological theories of decision-making and human behaviour. Theoretical findings are reviewed and areas identified in which decision-making behaviour may break down. The relevance of theoretical research to issues of competence and empowerment, and to the small body of research on decision-making and choice by people with an intellectual disability is discussed. It is concluded that future research should focus on contextual variables, including the nature of the decision to be made, which affect decision-making competence in people with an intellectual disability.     

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal-able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.     

‘Weightless?’: disrupting relations of power in/through photographic imagery of persons with intellectual disabilities

Missing in discussions of visual representations of people with intellectual disabilities are their own perspectives. Rooted in Derrida’s concern with the ‘right of inspection’ over visual representations, participatory arts-informed methodologies were used in research with people with intellectual disabilities. They critiqued and then used Photoshop to transform public photographs of labeled people. Responding to visual constructions of labeled persons as ‘weightless’/powerless, they revealed personal experiences of being denied control over their lives and representations. Yet their critiques and transformations reveal possibilities for their re-conceptualization as powerful, subverting stereotypes of labeled people and disrupting relations of power in disability imagery.     

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.     

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.     

Siblinghood through disability studies perspectives: diversifying discourse and knowledge about siblings with and without disabilities

Research about siblings where one has a disability has historically focused on the psychological outcomes of siblings of people with disabilities and has very rarely asked people with disabilities about their sibling relationships. This research focus represents the common individualizing approach and under-representation of people with disabilities that disability studies has argued against. Tracing the history of research about siblings and disability through de/institutionalization and towards current broader theories in disability studies, this article suggests that a range of disability studies perspectives can usefully de-individualize and expand research about siblings where one has a disability. Through examples of how materialist, feminist and inclusive perspectives can be applied to open up research about siblings and disability, the article argues that viewing siblinghood through the range of disability studies perspectives has the potential to expand this research field and represent new facets of siblings’ identities and lives together.     

Using discourse analysis to study the experiences of women with learning disabilities

There has been a steady rise in interest in qualitative research methods in the area of learning disability over recent years. Discourse analysis has found relatively little use though, particularly in studying the experiences of people with learning disabilities directly, rather than the accounts of non-disabled informants. The present study used a discourse analytic approach in examining the accounts of women with learning disabilities, in order to arrive at an understanding how they position themselves in relation to gender and disability. The results indicate that, while the learning disability literature and services are largely ‘gender blind’, for women with learning disabilities gender and disability cannot be separated. Instead, they may be faced with marked contradictions and dilemmas when they position themselves within dominant discourses of gender, while also subject to powerful discourses of disability.