Studying Experiences of Physical Disability

by Janet Salmons, PhD Manager, Sage Research Methods Community

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. A subsequent Methodspace post will offer a collection of resources related to research and intellectual disabilities.

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Reflections of Researchers with Disabilities

Chaudhry, V. (2019). Centering embodiment in disability research through performance ethnography. Qualitative Social Work, 18(5), 754–771. https://doi.org/10.1177/1473325018767728
Abstract. In this article, I bring disability studies and critical qualitative pedagogies to bear upon methodological concerns of social work to think through questions of disability embodiment, positionality, representation and political engagement in doing disability research. Combining methodological tools of performance ethnography with critical disability praxis, I present an example of what I term critical disability performance ethnography, a research methodology that has much potential for social work—particularly with respect to its emphasis on achieving social justice. I illuminate the transformative potential of shared disability embodiment in the process of knowledge production through my experiences as a disabled researcher doing disability research, while also drawing attention to the broader issues concerning disability and neoliberal development in the global south.

Clark, J. N. (2022). Disability and fieldwork: A personal reflection. Qualitative Research. https://doi.org/10.1177/14687941211072789
Abstract. This short Note offers a personal reflection about disability and fieldwork. It is not about how my disability, a long-term neurological condition, has affected my fieldwork. Rather, it is a series of thoughts about how my mobility issues might impact on my future fieldwork, but not only in a negative sense. The Note primarily discusses some of the ways that, potentially, my disability – which has changed how I interact with the world around me – might actually enhance my research and help to take it in new directions. I wrote the Note primarily for myself and for other researchers with disabilities, whether visible or hidden.

Snoddon, K. (2022). Writing as Being: On the Existential Primacy of Writing for a Deaf Scholar. Qualitative Inquiry, 28(6), 722–731. https://doi.org/10.1177/10778004211073071
Abstract. This article employs analytic autoethnography to study online events and social media that I participated in as a deaf scholar during the COVID-19 pandemic. With reference to Derrida’s philosophy of deconstruction, this article asserts the existential primacy of writing as a critical subject of inquiry for confronting normative language ideologies about what language is and how and where language is produced, received, understood, and performed.

Watharow, A., & Wayland, S. (2022). Making Qualitative Research Inclusive: Methodological Insights in Disability Research. International Journal of Qualitative Methods. https://doi.org/10.1177/16094069221095316
Abstract. Qualitative research necessitates the representation of, and engagement with, people who the research is designed to assist. Disability research not only seeks to explore populations where lived experience of disability is distinct, it is also a field where researchers themselves have lived experience. This paper reflects on the methodological innovations between the researcher, their supervisory team and the co-created opportunities to collect qualitative experiences from participants with disabilities, acknowledging the researcher’s own disability. The purpose of the paper was to provide scope to explore the multiple provisions required to be inclusive of accessibility needs as a way to bring unique consumer perspectives to the research table. The paper demonstrates, through a narrative lens, how the research space is altered for people and researchers when disability is present; requiring ways to ensure inclusive research practices are responded to. Recommendations for future co-creation of research with disability are identified.

Inclusion and People with Physical Disabilities

Jayes, M., Moulam, L., Meredith, S., Whittle, H., Lynch, Y., Goldbart, J., Judge, S., Webb, E., Meads, D., Hemsley, B., & Murray, J. (2021). Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project. Qualitative Health Research, 31(7), 1260–1274. https://doi.org/10.1177/1049732321994791
Abstract. In this study, we aimed to identify processes that enabled the involvement of a person with complex speech and motor disorders and the parent of a young person with these disorders as co-researchers in a U.K. research project. Semi-structured individual and focus group interviews explored participants’ experiences and perceptions of public involvement (PI). Sixteen participants were recruited, with representation from (a) the interdisciplinary project team; (b) academics engaged in discrete project activities; (c) individuals providing organizational and operational project support; and (d) the project’s two advisory groups. Data were analyzed using Framework Analysis. Five themes were generated: (a) the challenge of defining the co-researcher role; (b) power relations in PI; (c) resources used to enable PI; (d) perceived benefits of PI; and (e) facilitators of successful PI. Our findings provide new evidence about how inclusive research teams can support people with complex speech and motor disorders to contribute meaningfully to co-produced research.

Moriña, A., Perera, V. H., & Carballo, R. (2020). Training Needs of Academics on Inclusive Education and Disability. SAGE Open. https://doi.org/10.1177/2158244020962758
Abstract. The aim of this article is to analyze, from the academic staff’s perspective, the training needs they require to provide an inclusive education to students with disability. Academics from a Spanish university participated in this research. We used a qualitative methodology. We collected the information through semi-structured interviews and open-ended written questionnaires. We analyzed data using an inductive system of categories and codes. Three topics were addressed in the results: profile of academics according to their previous training, the importance of such training for them and the reasons for training, and the contents considered essential for training. In the conclusions section, the need for universities to design and implement training policies was addressed. In addition, the participants stated that they would be more sensitive and better prepared if they received training on disability-related issues. A clear conclusion of this study is that inclusive universities require the involvement of everyone.

Yang, L., & Lin, Z. (2022). The Impact of “Social Networking +” Technology on the Social Inclusion of People With Mobility Impairments in China. Social Media + Society. https://doi.org/10.1177/20563051221077016
Abstract. This study examined whether “social networking +” technology can facilitate the social inclusion of people with mobility impairments. Based on the modality, agency, interactivity, and navigability (MAIN) model of uses and gratifications theory, we conducted a survey on WeChat use among people with mobility impairments in China. We identified 16 gratification factors and tested their associations with social participation, service access, and societal relationships. The linear regression results indicated that instrumental gratifications can more significantly enhance the social participation and service access of people with mobility impairments, whereas non-instrumental gratifications have a greater impact on their social relationships. An analysis of social background and media use revealed that social networking has a greater impact on the social inclusion of people with mobility impairments from superior social backgrounds, especially in the social participation domain.

Rethinking Methodologies and Mental Models for Studying People with Physical Disabilities

Bailey, K. A., Dagenais, M., & Gammage, K. L. (2021). Is a Picture Worth a Thousand Words? Using Photo-Elicitation to Study Body Image in Middle-to-Older Age Women With and Without Multiple Sclerosis. Qualitative Health Research, 31(8), 1542–1554. https://doi.org/10.1177/10497323211014830
Abstract. In this study, we explored how women with varying relationships to disability and aging used photographs to represent their body image experiences. Seven middle-aged and older adult women with and without multiple sclerosis were asked to provide up to 10 photographs that represented their body image and complete a one-on-one interview. We used reflexive thematic analysis to develop themes and interpret the findings. Overall, the women expressed not only complicated relationships with their bodies, represented through symbolism, scrutiny of body features (e.g., posture, varicose veins, and arthritis) but also deep reflection linked to positive body image and resilience. These findings revealed not only the nuanced experiences women have with aging, disability, and gender but also the commonly experienced ingrained views of body appearance as each participant illustrated a difficult negotiation with the aesthetic dimension of their body image. Finally, we provide important implications of the use of visual methods in body image research.

Benjamin-Thomas, T. E., Laliberte Rudman, D., Gunaseelan, J., Abraham, V. J., Cameron, D., McGrath, C., & Vinoth Kumar, S. P. (2019). A participatory filmmaking process with children with disabilities in rural India: Working towards inclusive research. Methodological Innovations, 12(3). https://doi.org/10.1177/2059799119890795
Abstract. Children with disabilities often experience exclusion within their communities, and this exclusion can extend into research processes. The United Nations Convention on the Rights of the Child, however, emphasizes that children of all abilities need to be involved as decision makers in matters affecting them. This article provides an in-depth description of the process of a participatory action research project carried out with children with disabilities from a rural village in India. It argues for the utility of participatory filmmaking as a research methodology that supports inclusion of children with disabilities as co-researchers in research and action processes. The different phases of the research project, namely the preparatory, participatory research, and the action phase, are made transparent along with the details of activities carried out within each phase. The technical and pragmatic challenges faced within this participatory filmmaking process are pointed out, and strategies used to negotiate challenges and adapt this methodology to fit context-specific needs are shared. This account of the complex, yet flexible and adaptable, participatory filmmaking process is presented as means to support critical and informed uptakes of participatory filmmaking for inclusive research practices with children with disabilities.

Carroll, A., Chan, D., Thorpe, D., Levin, I., & Bagatell, N. (2021). A Life Course Perspective on Growing Older With Cerebral Palsy. Qualitative Health Research, 31(4), 654–664. https://doi.org/10.1177/1049732320971247
Abstract. Despite most children with cerebral palsy (CP) now living within typical life spans, little is known about how the effects of CP unfold across the life course and impact participation in everyday life during adulthood. In this study, we explored the experiences of 38 adults growing older with CP. Data were gathered using semi-structured interviews focused on participants’ engagement in activities in their community and analyzed using a life course perspective to deepen our understanding of the experiences of our participants. We found that individual agency, family and social contexts, as well as larger sociocultural contexts all shaped participants’ experiences as they grew older. The findings highlight the usefulness of the life course perspective for understanding how the effects of a diagnosis of CP unfold over time. Further use of this perspective can better inform health care services to meet the needs of adults with CP aging with a lifelong disability.

Egilson, S. T., Ólafsdóttir, L. B., Ingimarsdóttir, A. S., Haraldsdóttir, F., Jóhannsdóttir, Á., Gibson, B. E., & Hardonk, S. (2021). Life Quality and Participation of Disabled Children and Young People: Design and Methods of a Transformative Study. International Journal of Qualitative Methods. https://doi.org/10.1177/16094069211016713
Abstract. The LIFE-DCY research project has two aims. First, to evaluate disabled children’s quality of life (QoL) as reported by themselves and their parents, and second, to locate commonalities, differences, and conflicting issues in the processes that may influence disabled children’s life quality and participation. This paper describes the study design, methodology, and methods along with lessons learned. In addition various methodological and ethical concerns are raised. A sequential mixed-methods design was applied. In Phase one (mapping) we used KIDSCREEN-27 to study how disabled children evaluate their QoL compared with the perspectives of their parents and those of non-disabled children and their parents. Using the Participation and environment measure we also studied parents’ perspectives of their children’s participation in different social contexts. Altogether 209 disabled children and their parents, and 335 children in a control group and their parents (paired reports) participated in phase one. Phase two (unpacking) consisted of 14 case studies with disabled children aged 8–18 years and focus groups with 21 disabled people aged 19–35 years. The initial analysis was inductive and data-oriented. We then used critical and transformative lenses to shed light on how meaning was made of life quality and participation in relation to the context in which study participants found themselves. The LIFE-DCY research promotes an understanding of how important aspects of life quality and participation may intersect within different contexts and at different times. The theoretical understandings from this study may also help unpack various aspects of childhood disability in terms of knowledge and power and enhance understandings of how ideas about normality and childhood disability are constructed.

Harris, J., & Roberts, K. (2003). Challenging Barriers to Participation in Qualitative Research: Involving Disabled Refugees. International Journal of Qualitative Methods, 14–22. https://doi.org/10.1177/160940690300200202
Abstract. In this article, the authors discuss the need to consider the potential barriers faced by both interviewers and respondents who wish to participate in qualitative research. Drawing on their experience of enabling disabled refugees to interview other disabled refugees, they discuss their conceptual basis for challenging barriers, and the practical measures they took to address the health, impairment and linguistic needs of both interviewers and respondents participating in the ‘Disabled Refugees in Britain’ research project. They conclude by encouraging other researchers to identify and challenge the barriers faced by all potential participants in qualitative research.

Sang, K., Calvard, T., & Remnant, J. (2021). Disability and Academic Careers: Using the Social Relational Model to Reveal the Role of Human Resource Management Practices in Creating Disability. Work, Employment and Society. https://doi.org/10.1177/0950017021993737
Abstract. Disabled people continue to face a variety of significant barriers to full participation and inclusion in work and employment. However, their experiences remain only sparsely discussed in relation to human resource management (HRM) practices and employment contexts. The current study contributes to this gap in understanding by drawing together relevant work connecting HRM practices, diversity management and disability studies to examine the experiences of a sample of 75 disabled academics in the UK. Through the social relational model of disability, HRM practices socially construct disability in the workplace. Interview and email data from disabled academics in the UK are drawn upon to illustrate how organisational practices and policies, while intended to ‘accommodate’ disabled people, inadvertently construct and shape disability for people with impairments or chronic health conditions.

Tagaki, M. (2016). Narratives of Ambivalent Meanings of Acquired Physical Disability in Japan. SAGE Open. https://doi.org/10.1177/2158244016666310
Abstract. Experiences of people with disabilities cannot be simply examined from positive aspects or negative ones; both aspects are required. This study examines the ambivalent meanings of acquired disability through a qualitative analysis of the life stories of Japanese men with spinal cord injuries. Semi-structured interviews were conducted with 10 men who had sustained the injury over 10 years ago, at around the age of 20. The participants valued job and welfare or social activities, by managing their impairments. They regarded their personal disability issues as social ones and actively promoted social awareness. However, some of them recounted ambivalent experiences; they maintained the vision that they would become able-bodied people again, or were reluctant to participate in social activities, because they felt inferior to more socially active peers. Examination of ambivalent meanings of acquired disability is necessary for an understanding of the actual situation of people with disabilities.

Mfoafo-M’Carthy, M., Grischow, J. D., & Stocco, N. (2020). Cloak of Invisibility: A Literature Review of Physical Disability in Ghana. SAGE Open. https://doi.org/10.1177/2158244019900567
Abstract. This literature review surveys the state of current scholarship on physical disability in Ghana. The intention is to identify major themes and opinions relating to the challenges faced by Ghanaians with physical disabilities. After an extensive literature review, the authors selected 21 articles for inclusion based on the criteria that they had to focus on physical disability in a Ghanaian setting. Reviewing the articles revealed that most scholars have focused on the pervasive oppression of Ghanaians with physical disabilities. Six major topic areas emerged, including the experience of the disability rights movement from the 1990s to the present, the public perception of people with physical disabilities, the issue of families and abuse, the rights to education, challenges around employment and finances, and health care for disabled Ghanaians. This literature review presents these topics, discusses their implications, and makes suggestions for further research and action to improve human rights for Ghanaians with physical disabilities.

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Sage Research Methods Community posts about research and people who have disabilities