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.     

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 power of difference in inclusive research

Inclusive research involves people with intellectual disabilities actively and strives for empowerment and normalisation. Less is written about the power dynamics in a research team consisting of researchers and people with intellectual disabilities and the possible value of such collaboration. In this auto-ethnography we reflect on these aspects and the challenges along the way. We conclude that striving for normalisation can be paralysing; ‘doing the same’ is not always possible and can be disempowering for all members of the research team. Acknowledging differences and uniqueness enriches research outcomes and makes us reflect on our own, sometimes rigid, academic frameworks.     

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.     

Doing disability research in a Southern context: challenges and possibilities

Research on disability issues in countries of the South is primarily dominated by a focus on generating large scale quantitative data sets. This paper discusses the many challenges, opportunities and dilemmas faced in designing and undertaking a qualitative research study in one district in India. The Disability, Education and Poverty Project (DEPP) aims at exploring the role of education in the lives of young people with disabilities living in poverty. A central focus of the research is to engage with the young people with disabilities themselves and to understand how they construed their lives and experiences. This paper discusses three issues which are of central concern to the project: identification of the sample group, appropriateness of the research methods and, finally, an examination of the assumptions underpinning the research process.     

‘Why would I want to be anonymous?’ Questioning ethical principles of anonymity in cross-cultural feminist research

ABSTRACT

This article focuses on anonymity in research, considering it in relation to feminist values. There has been increasing debate in the feminist literature on the universality of ethics, including reflection on principles such as anonymity. However, there has been limited discussion of the specific challenge facing feminist researchers to amplify the voices of women participants, but also to respect their wishes regarding voice and agency. Assuring anonymity can be empowering for women and girls participating in research, allowing individuals to share their experiences freely without concerns about attribution and its consequences. On the other hand, if research ethics require anonymity, this can actually deny research respondents the right to be heard and operate as a form of silencing. This article focuses on research in Bihar, India, where many of the respondents rejected the idea of anonymity. Upholding a feminist ethics of care and delivering on a feminist commitment to giving voice to women requires a focus on women’s agency in the decision-making process around ethics.     

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.     

Improving research about us,with us: a draft framework for inclusive autism research

It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.     

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.     

Siblings with disabilities: a duoethnography on the intersections between a sibling relationship and disability

A growing body of research examines the intersections between sibling relationships and disability. However, much of this research focuses on non-disabled siblings and how the disabled sibling affects them, thereby continuing to center able-bodiedness and able-mindedness while further marginalizing disabled people. This research centers the voices of two siblings who are both disabled. Using duoethnography, the researchers engaged in a dialog interrogating how disability has played a role in our sibling relationship. Our dialog demonstrated the complexity of our experiences as siblings and as disabled people. We found that physical disability, a status we do not share, created role asymmetry and power differentials in our relationship. Conversely, we discussed how our shared experience of having psychiatric disabilities had a positive influence on our closeness, and enhanced our ability to provide mutual support and engage in reciprocity. This duoethnography has important implications for the inclusion of disabled siblings in future research.     

Rights to research: utilising the Convention on the Rights of Persons with Disabilities as an inclusive participatory action research tool

For those labelled disabled, disability rights are synonymous with human rights, not merely a sub-category. In this paper we consider disability rights in terms of the right of people labelled with learning difficulties to be actively involved in research. Examples from an inclusive participatory action research project undertaken in partnership with people labelled with learning difficulties demonstrate how the Convention on the Rights of Persons with Disabilities was operationalised using photo-voice to facilitate accessible research, analyse findings and promote social change.     

Negotiating with Gatekeepers in Research with Disadvantaged Children: A Case Study of Children of Mothers with Intellectual Disability

Child‐oriented researchers have long recognised children's right to be heard in research about their lives and, as experts about childhood, their perspectives should inform social policy and research. While it is encouraging that more children are consulted about matters of importance to them, some children's voices remain silenced. When researchers have to liaise with adults, such as parents and social workers, to recruit children, these adults make decisions about who participates. An account of recruiting children of mothers with intellectual disability, a potentially disadvantaged group, is presented. The reasons for gatekeeping and the implications of this are explored.     

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.     

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.     

We did it together: a participatory action research study on poverty and disability

This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. Our study used a participatory action research approach that challenges the norm of exclusion in the research process. Control of the research agenda has been inclusive and shared to varying degrees in accordance with the needs and desires of the members of an advisory committee of developmentally disabled people living with low income. We reflect on our process of working together according to four principles of participatory action research with disabled people. We discuss our successes and challenges enacting these principles in the hopes that future researchers can build upon our experience to be more inclusive of developmentally disabled people in their work.     

Navigating the ethical maze in disability research: ethical contestations in an African context

Despite changes in how disability is viewed, ethical requirements for disability research have hardly changed. Some ethical clearance procedures, processes and practices still consider persons with disabilities as not able, creating unease among researchers and research participants with disabilities themselves. This paper considers five ethical contestations arising from research in the area of disability in an African context: positionality, vulnerability, signed consent, anonymity, and research committee composition. We argue that ethical requirements in practice are still largely based on a medical model of disability and propose that culturally sensitive social and human rights models should influence disability research ethics.     

Beyond friendship: the nature and meaning of close personal relationships as perceived by people with learning disabilities

Many people with learning disabilities aspire to having friends and to forming close relationships. Often the latter are discouraged, but for those who enter into such a relationship little is known about the meaning and value it brings to their lives. The aim of this study was to gain an insight into the close relationships of eight couples with learning disabilities using a combination of dyadic and one-to-one interviews. Data collection and analysis was informed and guided by the core principles of grounded theory. Five significant types of benefits were identified from having close personal relationships, namely: comradeship, a sense of contentment, availability of mutual support, coping with the ups and downs of relationships, and a continuing commitment. Service providers could do more to facilitate the formation of close meaningful relationships, and strategies for doing this need to be identified and evaluated.     

The production of disability research in human geography: an introspective examination

The ‘geographies of disability’ is an important and evolving area of scholarship within human geography. Uniting the disparate areas of inquiry in this sub‐discipline are researchers’ shared interests in understanding processes of disablement and socio‐spatial experiences of disability. What drives human geographers to engage with this scholarship? We address this and other introspective questions through presenting an analysis of the findings of an online survey conducted with 30 such disability researchers. The overriding purpose is to understand how and why these researchers do what they do. Our presentation of the survey findings is divided into four organizational categories: (1) the researcher; (2) the inquiry; (3) the research outputs; and (4) the institutions. A key finding is that conducting disability research in human geography is very much about negotiating around or through constraints while identifying and enacting enablers in order to accomplish goals associated with producing disability research.     

Training Students as Facilitators in the Youth Empowerment Strategies (YES!) Project

SUMMARY

This article describes the training of students as facilitators for the Youth Empowerment Strategies (YES!) project designed to promote problem-solving, social action and civic participation among underserved elementary school youth in West Contra Costa County, California. This project involved 160 fifth grade students in after-school activities which identified their capacities and strengths in ways which aimed to decrease rates of alcohol, tobacco and other drug use and other risky behaviors. The article describes the recruitment and training of high school students and their graduate student counterparts as facilitators in this university-community partnership, and discusses the implications for other youth-focused community-based projects.     

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.