Studying the Experiences of Intellectual Ability and Disability

July is Disability Pride Month, and it is the anniversary of the US Americans with Disabilities Act.

The Americans with Disabilities Act (ADA) became law in 1990. The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else.

This month offers an opportunity to think about abilities in the context of research. How do our own abilities and limitations influence our research design choices and the nature of our studies? What steps should we take to make sure the data collection methods we plan to use are inclusive, accessible, and respectful of all?

In this post, find a small collection of open-access articles that include reflections from researchers, studies about inclusion, and some inspiration for rethinking methodologies and mental models for studying people with physical disabilities. Also see Guidelines for Writing About People With Disabilities. Another post offers resources related to research and people with physical disabilities.

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Reflections of Researchers with Neurodiversity or Intellectual Disabilities

Aimee Grant & Helen Kara (2021) Considering the Autistic advantage in qualitative research: the strengths of Autistic researchers, Contemporary Social Science, 16:5, 589-603, DOI: 10.1080/21582041.2021.1998589
Abstract. Autism is often viewed as an impairment, preventing Autistic individuals from achieving success in the world. We argue that, Autism can be an enhancement, particularly in some professional contexts, including qualitative research. However, Autistic people experience higher rates of unemployment and underemployment (lower skills/part-time). The social model of neurodiversity highlights the role of inaccessible workplaces and practices. Alongside this, the concept of the ‘Autistic Advantage’, a strengths-based model, emphasises the ways in which Autistic people are assets to the social structures in which they exist. Two late diagnosed Autistic women, acknowledged as qualitative research experts, review the literature on Disability, neurodiversity and research; outline their own professional strengths; discuss their professional strengths in the light of the literature; and make recommendations for Autistic researchers and their neurotypical colleagues. Autistic qualities and preferences can be strengths in qualitative research teams. This includes long periods of concentration (hyperfocus), leading to ‘flow’ and creative thinking, attention to detail, and detailed knowledge of topic areas that are of interest to the individual. We conclude that qualitative research teams can benefit from working inclusively with Autistic researchers. We present guidance to facilitate inclusive working, without which Autistic researchers may be Disabled by their work environment

Harvey, J. (2013). Footprints in the Field: Researcher Identity in Social Research. Methodological Innovations Online, 8(1), 86–98. https://doi.org/10.4256/mio.2013.0006
Abstract. This paper encourages researchers to consider their own identity to be of particular importance within any research project. Rather than seeing our own identities as being fully formed and therefore detached from a project, this paper suggests that we invest ourselves into research and acknowledge the impact we have on research. Investing ourselves into research, also involves considering our identities to be open to adaption. Consequently, an investigation of how our own identities can be influenced by the process of carrying out research is also discussed. It is suggested that this investment may open up endless possibilities for future research and practice. Notably, the process of self-investigation can result in transparent and ethical knowledge production. I use the example of my own research to highlight the advantages of remaining open to and embracing these opportunities for growth. Drawing on a poststructural conceptual framework, I critically explore some of the possibilities that a thorough interrogation of the self can create.

Watchman, K., Mattheys, K., Doyle, A., Boustead, L., & Rincones, O. (2020). Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability. Qualitative Health Research, 30(7), 1019–1032. https://doi.org/10.1177/1049732319901127
Abstract. There is limited global evidence exploring perceptions of dementia among people with intellectual disabilities. This article presents findings from the first known study where an inclusive research team, including members with intellectual disability, used photovoice methodology to visually represent views of people with intellectual disabilities and dementia. Drawing on Freire’s empowerment pedagogy, the study aims were consistent with global photovoice aims: enabling people to visually record critical dialogue about dementia through photography and social change. We investigated the benefits and challenges of photovoice methodology with this population and sought to identify perspectives of dementia from people with intellectual disabilities. Data collected identified issues such as peers “disappearing” and the importance of maintaining friendship as dementia progressed. Although reaching policymakers is a key aim of photovoice, this may not always be achievable, suggesting that revisiting Freire’s original methodological aims may lead to improved outcomes in co-produced research with marginalized groups.

Inclusion and People with Intellectual Disabilities

Caton, S., Hatton, C., Gillooly, A., Oloidi, E., Clarke, L., Bradshaw, J., Flynn, S., Taggart, L., Mulhall, P., Jahoda, A., Maguire, R., Marriott, A., Todd, S., Abbott, D., Beyer, S., Gore, N., Heslop, P., Scior, K., & Hastings, R. P. (2022). Online social connections and Internet use among people with intellectual disabilities in the United Kingdom during the COVID-19 pandemic. New Media & Society. https://doi.org/10.1177/14614448221093762
Abstract. Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.

McCausland, D., Murphy, E., McCarron, M., & McCallion, P. (2021). The potential for person-centred planning to support the community participation of adults with an intellectual disability. Journal of Intellectual Disabilities. https://doi.org/10.1177/17446295211022125
Abstract. Person-centred planning (PCP) puts individuals with an intellectual disability at the centre of service and support planning, identifying how individuals wish to live their lives and what is needed to make that possible. PCP has been identified as having the potential to facilitate improved social inclusion and community participation. A mixed-methods approach combined quantitative analyses with qualitative case studies of individuals with severe-profound intellectual disability to assess the impact of PCP on community participation for adults with an intellectual disability at a disability service in Dublin. We conclude that PCP may provide a good basis to plan community participation and, with the right supports in place, may provide opportunities for people with complex needs to improve their community participation. Supports including familiar staff and family are critical to the success of PCP for people with complex needs, and their absence may undermine the best intentions of PCP for this population.

Rethinking Methodologies and Mental Models
for Studying People with Intellectual Disabilities

Borgström, Å. (2022). Young people with intellectual disability and the internet: Challenges and opportunities in qualitative research. Journal of Intellectual Disabilities. https://doi.org/10.1177/17446295221095714
Abstract. Conducting qualitative research on young people with intellectual disability and the Internet poses methodological challenges as well as opportunities. Based on memos from a qualitative study, this article focuses on identified gaps related to the challenges of informed consent, access to Internet arenas and using stimulus materials. Opportunities, in terms of flexibility and relationships, are discussed and problematized. The discussion shows that researchers may need to move out of their comfort zone and try nonconventional methods of data collection. It is important to be creative and innovative but also to look after the rights and interests of participants. Furthermore, take a non-directive approach and assume young people with intellectual disability to be experts on their own lives. Finally, the power imbalance between a researcher and participant should be considered and the researcher should ask him-/herself which perspective he/she wishes to present or ‘whose side are we on?’

de Groot, R., Kaal, H. L., & Stol, W. P. (2019). Studying Problematic Online Behavior of Adolescents With Mild Intellectual Disabilities and Borderline Intellectual Functioning: Methodological and Ethical Considerations for Data Collection. International Journal of Qualitative Methods. https://doi.org/10.1177/1609406919857978
Abstract. The aim of this study is to find a research method that results in capturing lived experiences of problematic online behavior of adolescents with mild intellectual disabilities and borderline intellectual functioning within four risk domains: commercial interests, aggression, sexuality, and values/ideology. Three research methods were examined and field-tested in small sample pilot studies: an online questionnaire (N = 16), two focus group interviews (N = 6 and N = 14), and a combination of participatory observations and visual elicitation (N = 2). Both the questionnaire and the focus group studies were not able to generate sufficient knowledge to capture lived experiences. Key issues that arose were the respondents’ comprehension of the research questions, their tendency to give socially desirable answers, the influence of group dynamics, and a lack of rapport between researcher and respondent. Results generated from the third pilot study were more promising. Participatory observations in the form of deep hanging out combined with conversational interviewing and elements of visual elicitation mended these issues and helped to create an authentic research environment, build real relationships, and level the playing field between researcher and respondents. Additionally, it invited the respondents to voice their opinions and feelings about their online experiences. Finally, the study inspires to use different communicational means with the adolescents to increase the understanding of their virtual world. Some important ethical and methodological limitations to these findings are discussed.

den Houting, J., Higgins, J., Isaacs, K., Mahony, J., & Pellicano, E. (2021). ‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research. Autism, 25(1), 148–163. https://doi.org/10.1177/1362361320951696
Abstract. Despite calls for increased community engagement in autism research, the published evidence base suggests that participatory autism research remains rare. This study examined the extent and nature of community engagement in Australian research projects commissioned by the Autism CRC. Data were gathered using an online survey, comprising quantitative scale items and qualitative free-text responses, which was completed by 64 academic partners and 15 community partners. Quantitative findings indicated that autism research stakeholders in Australia are largely supportive of community engagement in research and have had positive experiences of participatory research. These findings were not wholly corroborated by the qualitative findings, however, which suggested that participants lacked understanding of participatory research, and held attitudes that may hinder the conduct of successful participatory research. Systemic issues within research settings were also perceived to impede community engagement in research. Both academic and community partners would benefit from better understanding of participatory research approaches, paired with practical and epistemological shifts at the systemic level, to ensure that future community engagement in autism research is respectful, equitable and beneficial to all stakeholders.

Hillman, A., Jones, I. R., Quinn, C., Nelis, S. M., Lamont, R. A., & Clare, L. (2020). ‘All the world’s a stage’: Accounting for the dementia experience – insights from the IDEAL study. Qualitative Research, 20(5), 703–720. https://doi.org/10.1177/1468794119893607
Abstract. Qualitative dementia research emphasises the importance of recognising the voice of the person with dementia. However, research imbued with a politics of selfhood, whereby individuals are called upon to give coherence to experience and emotion, jars with representations of dementia as a gradual decline in capacity. Moreover, it reinforces an assumption that there is an essential experience that can be accessed through different methods. Drawing on Atkinson and Silverman, we view the interview not as confessional but rather as an outcome of social interaction. This paper draws on qualitative interviews from the Improving the Experince of Dementia and Enhancing Active Life (IDEAL) study, to focus specifically on the forms of accounting and storytelling of people living with dementia and how these are produced through the course of the interview encounter. Extracts from our interviews highlight key aspects of this interactional process: (a) social conventions and temporality, (b) self presentation and identity work, (c) accounts and wider cultural meanings. To conclude, we suggest that qualitative research with people with dementia requires a reframing of both the interview encounter and interpretive practices.

Santinele Martino, A. (2022). Ethically important moments: Researching the intimate lives of adults labeled/with intellectual disabilities. Qualitative Research. https://doi.org/10.1177/14687941221110179
Abstract. People labeled/with intellectual disabilities are rarely given the opportunity to “speak” about their sexual and romantic experiences on their own behalf. Persisting stereotypes and (over)protectionism sometimes serve as social mechanisms that silence disabled people in knowledge creation. Although further protections need to be implemented, people labeled/with intellectual disabilities must have an opportunity to share their perspectives and experiences with love and intimacy. This research note discusses some of the “ethically important moments” I have encountered as a researcher looking at the romantic and sexual lives of adults labeled/with intellectual disabilities, as well as how my embodied experience in the field led me to reflect on my own positionality as a researcher and sexual being.

Schnellert, L., Tidey, L., Co-creators, R., & Hole, R. (2021). “You have the right to love and be loved”: participatory theatre for disability justice with self-advocates. Qualitative Research. https://doi.org/10.1177/14687941211034963
Abstract. Individuals with intellectual disability are often left out of and overlooked in discussions on sexual health and sexuality. Given this, we undertook a participatory theatre research project to better respond to the needs of the individuals with intellectual and developmental disability regarding their sexual agency and sexual citizenship. The project, entitled Romance, Relationships, and Rights arose when the executive director of a community living agency approached researchers at the University of British Columbia’s Canadian Institute for Inclusion and Citizenship to learn about how they, as an agency, could better support their community. To disrupt sexual ableism and traditional theatre hierarchies, we collaboratively turned to participatory and disability theatre with the aim to advance and promote the sexual citizenship of individuals with intellectual and developmental disability, who refer to themselves as self-advocates - those who speak and act with agency. The challenges of equitable co-creation arose throughout the theatre process; the themes of deconstruction/co-construction and uncertainty and liminality reveal the iterative process of centering self-advocate voices.

Starke, M. (2022). Parents with intellectual disability and their reflections about relationships and support. Journal of Social Work. https://doi.org/10.1177/14680173221092703
Abstract. It is reported that parents with intellectual disability are generally more likely to have depleted social networks and a lack of meaningful friendships. The aim of this study is to explore parents’ descriptions of the relationships in their networks and their reflections on support and what makes the relationships in their networks a valuable resource in their parenting. Semi-structured interviews were conducted with 15 mothers and 6 fathers. The data were analysed using content analysis and theoretical perspectives of social relations and social capital.

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