‘I walk from trouble’: exploring safeguards with adults with intellectual disabilities – an Australian qualitative study

People living with intellectual disabilities have a right to be safe from abuse and neglect and have a right to be included in the decision-making process determining safeguards that will affect them. However, the research evidence that could underpin good professional practice in terms of co-producing safeguards against abuse and neglect directly involving people with intellectual disabilities is largely missing. This article, based on qualitative research involving semi-structured interviews conducted during the first half of 2014, seeks to strengthen this evidence base. It reports on the prevention strategies identified by 12 adults with intellectual disabilities about how to stay safe and compares these with the findings of similar research. The article suggests that a comprehensive safeguarding approach comprises both life course-focused safety training and access to assisted decision-making. The article argues that given the plethora of risk situations encountered by people living with intellectual disability, assisted decision-making should take the form of a co-creation process that is situation specific and grounded in everyday life.     

Intellectual disabilities,domestic violence and legal engagement

There is increasing recognition that legal responses to domestic violence can only be effective if those who implement the law – for example, child protection workers, police and magistrates – are also effective. This article draws on the narratives of women with intellectual disabilities to analyse their experiences of engaging with the legal system as a response to domestic violence. In particular, the article considers whether they have access to appropriate support to utilise the remedies afforded by the law on an equal basis to survivors without disabilities. In considering this we draw on the concept of supported decision-making, an approach recommended by the United Nations Convention on the Rights of Persons with Disabilities.     

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.     

Voting and the Scottish referendum: perspectives of people with intellectual disabilities and their family and paid carers

Voting is a human right for every citizen yet many people with intellectual disabilities do not vote or have little support to exercise their right to vote. This article explores views on the wider aspects of voting against the backdrop of the Scottish referendum using focus groups involving people with intellectual disabilities (n = 12), family carers (n = 7) and paid carers (n = 5). Findings revealed that people with intellectual disabilities had similar concerns to the general population about the referendum. Regarding voting, all groups identified the need to discuss issues and for practical support and accessible information to ensure informed choices were made when voting.     

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.     

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.     

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.     

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.     

‘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.     

Learning how to be (a) patient: visual analysis of accessible health information leaflets for people with intellectual disabilities

Creation of jargon-free Easy Read health texts, incorporating carefully chosen words and images, is promoted as a way of removing health access barriers for people with intellectual disabilities. Using a social semiotic framework, this article explores the social construction of the patient with intellectual disabilities within a sample of adapted health texts, focusing on the visual images used. Images were coded and analysed according to dimensions suggested by Kress and van Leeuwen’s work on ‘visual grammar’. Images highlight the inclusion of patients with intellectual disabilities in mainstream healthcare settings. However, these patients are depicted as being inserted into somewhat idealized healthcare routines that are pre-determined and micro-managed through to completion. Consideration of risks and choices associated with healthcare use are downplayed. The article concludes that the care of patients with intellectual disabilities continues to constitute potential trouble for mainstream healthcare providers, rather than being an expected aspect of everyday practice.     

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.     

Ageing Adults with Intellectual Disabilities: Self-advocates' and Family Members' Perspectives about the Future

Abstract

Although the numbers of ageing adults with intellectual disabilities are increasing, current systems are ill-prepared to meet the unique needs of this population and research is needed to direct policies and practices aimed at supporting ageing adults with intellectual disabilities. This article presents the qualitative findings of research conducted in British Columbia (BC), Canada, which explored the future perspectives of 11 ageing adults with intellectual disabilities and 11 family members. Future concerns of the adults with intellectual disabilities included concerns for their ageing parents, for their future living arrangements, and about loneliness. Family members concerns centred on ensuring the future security of their loved one with an intellectual disability, addressing legal issues and financial security, and promoting future choice and self-determination. The results point to the importance of early and intentional planning that supports and balances the needs and desires of both ageing adults with intellectual disabilities and family members.     

Effective Responses to Offenders with Intellectual Disabilities: Generalist and Specialist Services Working Together

Abstract

Despite policies of deinstitutionalisation, many people with intellectual disabilities in developed western countries continue to live in mainstream institutional settings, such as correctional facilities, rather than in the community with support from disability services. This paper reports on the life stories of 10 people with intellectual disabilities, who had been imprisoned in adult correctional facilities in Queensland. The pathways taken by these 10 people into and out of prison are marked by significant abuse, neglect, and poverty. Significant disparity and disconnection is also displayed between the policies and service approaches, particularly between the disability, mental health, and correctional systems in Queensland. Based on these findings, a framework for practice, which spans both generic and specialist services, is suggested.     

‘People with learning disabilities need a commissioner and a legal charter of rights’ – no they do not!

Since the UK Winterbourne View scandal, there have been a number of reports and responses recommending what should be done to ensure a similar scandal does not happen again. Two ideas have emerged which suggest that people with learning disabilities need a legal charter of rights and a commissioner to make a difference in their lives. This article, however, argues that although it is right that issues affecting people with learning disabilities are at the heart of discussion and debate, this does not take into account the complex, flexible and multiple identities of people with learning disabilities, and their knowledge, experiences and skills. This would be more beneficial in understanding the lives of people with the label of learning disabilities than a commissioner or a charter.     

Intellectual disabilities,violent conflict and humanitarian assistance: advocacy of the forgotten

This article examines the experiences of people with intellectual disabilities in violent conflict who have been neglected in practice and academia. Such invisibility, combined with the disabling impact of society, their low priority, and the nature of their impairments, results in a disproportionately negative impact of conflict on people with intellectual disabilities. Drawing on a wide range of sources, including humanitarian workers, this article examines their experiences and analyses how much consideration has been given to people with intellectual disabilities in humanitarian assistance policy and practice in light of their increased need and vulnerability. Lack of awareness and recognition of their diverse experiences can result in their needs failing to be adequately met, which compounds their disproportionately negative experience of conflict. It is important to finally start paying attention in order to ensure their inclusion in humanitarian responses.     

International Ethical Safeguards: genetics and people with learning disabilities

This paper discusses the ethical issues and international standards relating to genetic research on people with learning disabilities. Research protocols must acknowledge the people who are subjects of such research and must reflect emerging disability philosophies. This research provides a brief historical context and considers five issues of fundamental importance to people with learning disabilities through a discussion of participation in the research design, independent advocacy, justice, non-discrimination and autonomy. These concerns have been investigated in England and abroad, and it is therefore valuable to undertake a review of the legal and ethical context of genetic research for vulnerable people who may be deemed unable to provide consent.     

A toolkit for accessible and respectful engagement in research

Social, scientific, and ethical factors underscore the value of respectfully including people with intellectual/developmental disabilities in research despite significant barriers to their research participation. In pursuit of this goal, we worked with two research advisors with intellectual/developmental disabilities to develop a qualitative study toolkit emphasizing accessibility, flexibility, variety, and responsiveness. The toolkit includes procedures and materials for recruitment, consent, interview locations and questions, breaks, and incentives. We recommend that future research utilizes insights of individuals with intellectual/developmental disabilities in research that impacts their lives, and that researchers systematically improve the use of procedures and toolkits.     

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.     

The use of photovoice with people with intellectual disabilities: reflections,challenges and opportunities

Photovoice is part of the growing use of participatory research approaches with people with intellectual disabilities. In this paper we explore the process, opportunities and challenges associated with the use of photovoice with people with intellectual disabilities, illustrated through a research project entitled ‘This Is Me’. Photovoice requires researchers to share power and control in the research process and to tolerate uncertainty. Large investments in time and money are also required. These challenges, however, are outweighed by the benefits of the use of photovoice with people with intellectual disabilities. Photovoice creates a space where people with intellectual disabilities can meaningfully participate and exert control in the research process, and as such is an empowering experience. As a participatory research approach, photovoice is accessible and offers the opportunity for people with intellectual disabilities to develop new skills, confidence and experience inclusiveness in their own terms.     

Deinstitutionalisation: the management of rights

This article is based on an ethnographic study of the closure of a large institution for people with intellectual disabilities in Australia. The research involved 20 months of field work including participant observation in a locked unit at the institution, 120 interviews with those closing the institution, staff and families involved with people living there. The researcher was also involved as a participant observer in the closure of the institution. The paper argues that deinstitutionalisation is a problematic process because it necessarily involves a tension between two incompatible discourses: one concerned with the 'rights' of people with intellectual disabilities and the other with their 'management'. This tension leads inevitably to compromises in the practice of deinstitutionalisation. The paper concludes by exploring the implications of this argument for future institutional closures.