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.     

Public Documents and Legislation: The South Australian Juvenile Courts Act, 1971, and Community Welfare Act, 1972

Abstract

This study of social work practice and disability follows the history of two fields of disability: mental illness and intellectual disability. Of particular interest are two key policy influences in the disability sector, deinstitutionalisation and normalisation. The extent to which deinstitutionalisation and normalisation have brought real benefit to people with disabilities is examined from social workers' perspectives. The implementation of these policies and practices on the daily work of social workers is discussed. This research indicates that social work practice in these two fields involves significantly different foci and approach. The study found that the similarities and differences between the two fields of practice are influenced by the historical and contemporary developments in the care and control of people with disabilities.     

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.     

‘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?     

‘It is like being put through a blender’: inclusive research in practice in an Australian university

Abstract

How can university-based researchers committed to a position of solidarity with, and activism alongside, people with disabilities maintain such a stance in the metric-driven environment of the modern university? How can the academy ensure there is the opportunity for people with disabilities to contribute to production of the knowledge in which they have most at stake, in a wider environment where access to basic services for people with disabilities is precarious? In this article we draw on our experience as a team of university-based and community-based researchers with and without disabilities to reflect on these questions, using a framework of reflexive solidarity to consider practical strategies for strengthening the relationship between disability activism and the academy.     

‘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.     

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.     

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.     

Logics and discourses in disability arts in Sweden: a neo-institutional perspective

Theatre for and with people with intellectual disabilities has gradually become a more frequent and popular work arrangement within the municipal daily activities in Sweden. This article focuses on one of those theatres - Olla - and the aim is to analyse the institutional settings and normative environment surrounding the theatre and the way in which it relates to different institutional rules and expectations. Analytical implications will be drawn against neo-institutional theory and will show how Olla expresses both an artistic and a therapeutical logic, and that legitimacy is dependent on a loosely coupled formal structure between process and product, art and therapy. These logics are formulated within two different discourses, which leave Olla balancing between being a normalisation project or disability art which puts emphasis on the celebration of difference.     

Youth leadership program for changing self-image and attitude toward people with disabilities

Society has a negative attitude toward people with intellectual disabilities or psychiatric disabilities. It is well documented that they are subjected to prejudice, stigma, and negative attitudes (Di Giulio, 2003 ; Finger, 1994 ). Professional literature indicates that information about disabilities and encounters with persons with disabilities can change negative attitudes (Carter, Hughes, Copeland, & Breen, 2001 ; Krajewski & Flaherty, 2000 ). This study accompanied 164 9th-grade students from various junior high schools throughout Israel. Half of the students participated in an integration program for changing attitudes toward persons with disabilities, and the other half served as the control group. The research examined the existence and the degree of relationship between participation in the program, changes in attitudes toward people with disabilities, and self-image. The research findings pointed to a positive change in attitudes of the participants of the program in comparison with the control group, resulting mainly from personal contact with people with disabilities. No relationship was found between levels of self-image of the research group and attitudes toward people with disabilities.     

Defining and organizing self-advocate centered groups: implications of survey research on self-advocacy groups in Japan

Ideally group members who have intellectual disabilities should have power in their self-advocacy groups, leading to groups that can be considered 'self-advocate centered.' Currently, not all self-advocacy groups can be considered self-advocate centered because group advisors have an overwhelming influence on group decisions. This article assumes that establishing self-advocacy groups in which members truly control the agenda and make key decisions is one of the most effective methods to empower people with intellectual disabilities. This study identifies factors useful in identifying 'self-advocate centered' groups, and especially focuses on the relationship between self-advocates and advisors. It is based on a quantitative research project conducted in Japan. According to the results of the research, though relational transformation between self-advocates and advisors was commonly seen in many self-advocacy groups, conflicts between them were scarcely observed. The meaning of relational transformation without conflicts is considered, along with the concepts of independence and interdependence.     

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.     

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.     

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.     

But it’s not all about the sex: mothering,normalisation and young learning disabled people

This paper is about mothering, young learning disabled people, their sexualised and relationship lives and normalisation – not through the lens of the disabled person, but via a mothers perspective and theoretical discussion. As a mother who has a learning disabled daughter, a feminist and an academic my own mothering experience, my Ph.D. research and social theory are woven throughout this paper with the intention of opening up debate about sex, intimacy and normalisation, and how these impact upon young learning disabled people. I suggest that the relationship between sex, reproduction, intimacy and intellectual impairment and a project to decipher what it means to be human in all its dirty glory are also part of the discourse that needs to be discussed experientially and theoretically. So much so that the messy world within which we all live can be variously and differently constructed.     

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.     

“Where’s the human dignity in that?”: LGBTQIA + people with intellectual disability exploring sexual lives and respectful relationships

Abstract

For people with disabilities, sexuality remains a contested and restricted space. This research investigated how the Sexual Lives & Respectful Relationships (SL&RR) program might be adapted for people with intellectual disabilities who identify as LGBTQIA+. The program included co-developed materials and specifically curated narratives. It was received positively. The facilitators identifying as members of the LGBTQIA+ community was also reported as positive. While an inclusive program might be ideal, participants expressed the view that community attitudes (including those of other people with intellectual disability) might not yet be conducive to integrated human relationships programs.     

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.     

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.     

‘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.