disabilityresearch

[disabilityresearch]

Creating inclusive experiences through research practices

By practicing inclusive design, businesses can increase revenue, decrease costs, improve resilience, and build trust with customers and employees. To practice inclusive design successfully, your research practices must also be inclusive.

[disabilityresearch]

When Designing Disability Survey Questions, Align Measurement To Purpose

[disabilityresearch]

Communicating Diversity: (Cognitive) Ableism in Information-Seeking Research

The applied science of Library and Information Science (LIS) has long emphasized understanding user behaviors in information-seeking processes, particularly in higher education environments where new information and research are generated. However, a notable gap exists in the literature regarding the information-seeking and information-use experiences of autistic and neurodivergent students and adults, impacting an interconnected network of relationships between researchers, librarians, LIS students, and postsecondary students seeking support and services. In LIS, research informs practice, and information-seeking is a cognitive and learning process, especially prescient in academic institutions. The failure to address the information needs of autistic, neurodivergent, and disabled people in LIS research and LIS curricula, which educates future librarians, impoverishes both practitioners and students. Drawing from personal experiences and empirical data, the author highlights the prevalence of neurodivergent students in higher education and investigates why, despite a growing awareness of neurodiversity, LIS research, scholarship, and program curricula largely overlook the specific needs of neurodivergent individuals. The article asks questions and proposes ideas for facing the consequences of an incomplete LIS education, addressing the necessity of introducing inclusive pedagogical practices in the academic library and getting honest about the field’s cognitively biased scholarship because we cannot understand the information behavior landscape in all its neurobiological variations nor anticipate the future of information use and creation if we have bypassed neurodivergent and autistic minds.

Community Brief

Why is this topic important?

Gatekeeping in information science research has excluded autistic college students and adults from representation in studies on the information behaviors of library users. We do not know how autistic students seek and use information, and librarians-in-training are not being formally trained to help neurodivergent students find the support and information they need to succeed academically. This topic is important because college librarians use library research to develop inclusive services. The absence of research communicates that neurodivergent students do not have unique needs or deserve accommodations in seeking and using information.

What is the purpose of this article?

This article aims to shed light on how overlooking the experiences and challenges of autistic students in accessing and finding the information they need is a barrier that library science needs to address in research and practice. Drawing from personal experience and available studies, the author seeks to raise awareness of the importance of libraries in a college student’s experience and how library science, as a field, needs to focus on its neurodivergent and autistic students and users to be inclusive.

What perspectives does the author bring to this topic?

The author, an autistic individual with personal experience navigating higher education as a student, librarian, and researcher, brings a unique perspective to this topic.

What is already known about this topic?

There is growing awareness about neurodiversity in library studies overall. However, graduate library school programs are not adding courses to prepare librarians to help disabled, neurodivergent, and autistic students. There is little known about this research topic because researchers have chosen to study the information behaviors of cognitively typical college students, ignoring different cognitive neurotypes.

What does the author recommend?

The author asks questions and offers suggestions for addressing this gap, such as bringing disability, neurodiversity, and autism topics into the library school classroom and designing research studies that specifically focus on the voices and experiences of autistic students and adults.

How will these recommendations help autistic adults now or in the future?

Adding disability and neurodiversity topics to the library school curriculum would help train future librarians. Researching how autistic college students use and search for information will give college librarians data that help them understand how to support, teach, and serve neurodivergent information seekers. Implementing these recommendations would help autistic students and adults receive more support and inclusion in every higher education environment.

[disabilityresearch]

Acceptable Thresholds: Learning From Critical Disability Methodology to Inform Embodied, Qualitative Research

The writers of this article were brought together by questions of pain. Informed by our own experience with research on difficult and personally meaningful topics, this article explores the value and risks of emotional commitment in qualitative research methods and the corporeal consequences that can result from this commitment. We consider how stress informs an embodied practice of qualitative research, taking into account the thresholds and limits of the body and how these limits shape and transform data collection and analysis. While we endorse the importance of subjectivity in research, we investigate the tension between when physical effects of stress are necessary and needed and when they are harmful to the researcher. This exploration of embodiment has made us question practices of accessibility in the training and process of conducting difficult, personally demanding work. We turn to critical disability methodology to better understand the embodied consequences of research, arguing that researchers often experience continuous negotiation between their own physical well-being and their emotional and identity-based commitments. Tenets from critical disability methodology help resist the dehumanization and mechanization of qualitative researchers by focusing on, rather than ignoring, the body. We emphasize a need for more instructional practices that directly and routinely acknowledge the tension between embodiment and subjectivity in research and that embolden researchers to speak of them, to consider them in their research protocols, and ultimately to determine their own acceptable thresholds. Our goal is to enact more equitable and inclusive qualitative research practices that account for physical and emotional pain.

[disabilityresearch]

Co-Producing access(ible) Knowledge: Methodological Reflections on a Community-Based Participatory Research

This paper is a methodological reflection on a community-based participatory research (CBPR) project that used the photovoice method to unravel the educational experiences of disabled college students in China’s higher education institutions. Although CBPR endeavors to nurture equitable community engagement in research processes, there are practical challenges to address the full participation of people with divergent disabilities and access needs. Drawing upon the critical disability studies literature, and particularly upon the activist scholarship of disability justice that revolves around interdependency, collective access, and cross-disability solidarity, we provide an open discussion on the complexities, tensions, and challenges of envisioning and creating access for participants with different disabilities in a visuality-centered CBPR. Our findings suggest that access creation in CBPR should go beyond the checklist style of accommodation and instead be approached as relational, dynamic, and iterative processes that require ongoing reflection, (re)learning, and negotiation among researchers and participants. We implemented nonvisual photography to adapt to the visuality-centered bias in the photovoice method. Nonvisual photography empowered participants with visual disabilities to evoke multiple sensorialities in their photo-taking, displaying, and interpretation. Moreover, the participants without visual disabilities also learned and practiced collective access and interdependency through co-transforming the CBPR into an accessible space for all. The heterogeneity among participants with divergent disabilities and access needs challenged CBPR’s envisioning of a unified community with recognized commonalities. The inclusion of participants across disability groups created an opportunity for all participants to draw meaning from the ableist social and political circumstances that forged them as a community and to develop a sense of belonging and bonding in and through CBPR. In that light, disability justice and access should be reimagined and incorporated into CBPR.

[disabilityresearch]

Empowering Disabled Voices: A Practical Guide for Methodological Shifts in Biology Education Research

Biology education research provides important guidance for educators aiming to ensure access for disabled students. However, there is still work to be done in developing similar guidelines for research settings. By using critical frameworks that amplify the voices of people facing multiple forms of marginalization, there is potential to transform current biology education research practices. Many biology education researchers are still in the early stages of understanding critical disability frameworks, such as Disability Critical Race Studies (DisCrit), which consists of seven tenets designed to explore the intersecting experiences of ableism and racism. Our Research Methods Essay uses DisCrit as a model framework and pulls from other related critical disability frameworks to empower disabled voices in biology education research. Drawing from existing scholarship, we discuss how biology education researchers can design, conduct, and share research findings. Additionally, we highlight strategies that biology education scholars can use in their research to support access for participants. We propose the creation and sharing of Access and Equity Maps to help plan—and make public—the steps researchers take to foster access in their research. We close by discussing frequently asked questions researchers may encounter in taking on critical frameworks, such as DisCrit.

[disabilityresearch]

Models of Disability as Research Frameworks in Biology Education Research

Advancing equity and justice in undergraduate biology education requires research to address the experiences of disabled students. Scholars working in disability studies have developed models of disability that inform Discipline-Based Education Research (DBER). To date, DBER literature has been predominantly informed by the medical and social models of disability. The medical model focuses on challenges that affect people with disabilities on an individual basis, while the social model focuses on how one's surrounding environment contributes to the construction of disability. In this essay, we discuss past DBER research and opportunities for future research using each of these models. We will also discuss a third, less commonly used model that offers exciting opportunities to drive future research: complex embodiment. Complex embodiment positions disability as a social location that reflects a greater societal value structure. Further examining this value structure reveals how ability itself is constructed and conventionally understood to be hierarchical. Additionally, we explain epistemic injustice as it affects disabled people, and how future education research can both address and counteract this injustice. We discuss how expanding the frameworks that serve as lenses for DBER scholarship on disability will offer new research directions.

[disabilityresearch]

Responsible inclusion: A systematic review of consent to social-behavioral research with adults with intellectual disability in the US

Background

In recognition of their status as a health disparities population, there is growing emphasis on conducting research inclusive of adults with intellectual disability to generate new knowledge and opportunities to improve health and equity. Yet they are often excluded from research, and human research participant protection experts and researchers lack agreement on effective consent protocols for their inclusion.

Objective

We sought to identify approaches to consent in US-based social-behavioral research with adults with intellectual disability.

Methods

We conducted a systematic review on approaches to self-consent with adults with intellectual disability published between 2009 and 2023, identified via searching eight databases and reference list hand searches. We identified 13 manuscripts and conducted a thematic analysis.

Results

Our analysis identified themes related to guiding principles, strategies to enhance informed and voluntary consent, approaches to consent capacity, involving individuals subject to guardianship, and strategies for expressing decisions and enhancing ongoing decisions.

Conclusions

Manuscripts largely reflected an emphasis on identifying approaches to consent that reflect disability rights principles to promote the right to be included and make one's own decisions based on assessment of relevant information, risks and benefits, and to employ reasonable modifications to achieve inclusion. To avoid the risks of exclusion and advance the responsible inclusion of adults with intellectual disability, we make recommendations to align consent approaches anchored in contemporary thinking about human research participant protections, including through integration with disability rights.

[disabilityresearch]

Culture and Organization Special Issue Call for Papers: Researching and Writing Differently about Dis/ability - Interdisciplinary Inclusion, Perspectives and Approaches Editorial team

"Over the past decade, Researching and Writing Differently has increasingly been gaining momentum and attracting contributions that go beyond traditional academic norms (Boncori, 2022; Kostera, 2022; Pullen et al., 2020; Scholz and Szulc, 2023). This approach-also often inhabited as a 'movement' or as a form of academic activism and organizing-extends our understanding of organizations and forms of organizing in many ways: for example, by giving visibility to silenced topics; by including and listening to the voices and lived experiences across and beyond difference; by re/centering marginalized positions and positionalities; by encouraging alternative research approaches through experimental, auto/ethnographic and arts-based methods; and by approaching the way we write or communicate academically through personal, evocative, affective and embodied texts. In line with the inclusive, experimental and interdisciplinary spirit and ethos of Culture and Organization, this special issue aims to harness the power and potential of Researching and Writing Differently in relation to dis/ability. Definitions and experiences of disability vary across societies and are influenced by a wide range of material and social factors. Traditionally, studies on disability have been influenced by three primary models of disability: the medical model viewing disability as a physical defect, illness or characteristic needing correction or cure; the social model, which identifies systemic barriers that exclude disabled individuals as a direct response to medicalised understandings of disability; and the affirmative model that appreciates the inherent diversity of bodies and minds (for full review, see Watson et al., 2022). While from a medical model perspective disability is perceived to be caused by illness or impairment that leads to pain and some social disadvantage, the social model espoused in this Special Issue views disability is associated as being primarily organized by oppression, inequality and exclusion (Thomas, 2004). These traditional approaches form the backdrop against which Critical Disability Studies (CDS) has emerged. CDS views disability as a cultural, political, and social phenomenon (i.e. rather than merely a medical or individual issue) worthy of its own methodological thinking (Schalk, 2017), which extends the broader goals of traditional disability studies (Mollow, 2017) to include theories from various philosophers."

Complete details at the link above.

[disabilityresearch]

Defiant Bodies: A Punk Rock Crip Queer Cabaret: Cripping and Queering Emancipatory Disability Research

This chapter argues for a critical re-visitation of Emancipatory Disability Research through a queer crip lens.

[disabilityresearch]

Special Issue on Centering the Voices of People With Intellectual and Developmental Disabilities in the Process and Outcomes of Science 

This Special Issue focuses on centering the voices of people with intellectual and developmental disabilities in the process and outcomes of science.

[disabilityresearch]

Invisible: People with Disability and (In)equity in Precision Medicine Research

This is an open peer commentary responding to Precision Medicine for Whom? Public Health Outputs from “Genomics England” and “All of Us” to Make Up for Upstream and Downstream Exclusion, discussing the lack of inclusive research featuring people with disabilities.

[disabilityresearch]

Inclusion of Black and Latina Parents With Physical Disabilities in a Qualitative Research Study: A Peer Researcher Training Model

Public health qualitative research has largely failed to achieve full inclusion of people with disabilities and Black people and Latinx/as. Although there is a small, but growing, community of academic researchers from each of these communities, there has been limited involvement of non-academic community members in research. While Community-Based Participatory Research (CBPR) has informed the inclusion of marginalized groups in research for decades, instances of full inclusion of disabled Black people and Latinx/as in public health research have been minimal. One way to ensure the inclusion of Black/Latinx community members with disabilities is to involve them as peer researchers. As part of a qualitative study examining pregnancy experiences of individuals with physical disabilities from Black/Latinx communities, academic researchers trained four peer researchers to conduct interviews and analyze the data. This paper describes our approach, which may serve as a model for training peer researchers in qualitative research methodology for future studies. All peer researchers were women who identified as Black or Latina parents with physical disabilities. This approach was chosen due to the study’s focus on the intersections of disability, race, ethnicity, and pregnancy, and applied a disability justice lens. Although CBPR offers important principles for research existing literature suggests CBPR is not always inclusive and power sharing. Therefore, we developed a research training model which places a unique and timely focus on the intersections of CBPR, racial and disability justice, the importance of building the capacity of Black and Latina disabled peer researchers, and its importance to building community relationships and trust.

[disabilityresearch]

Epistemic injustice, healthcare disparities and the missing pipeline: reflections on the exclusion of disabled scholars from health research

People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within the disability community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as ‘strategies of exclusion’. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy.

[disabilityresearch]

Lessons Learned From Research Collaboration Among People With and Without Developmental Disabilities 

Research related to the developmental disability (DD) community should include collaboration with individuals with DD. Unfortunately, people with DD are infrequently involved in research projects in meaningful ways, and there is little guidance about how to collaborate equitably with researchers with DD. The purpose of this article is to share lessons learned from a collaborative research study among researchers with and without DD using both qualitative and quantitative methods to develop and examine the effectiveness of a civic engagement intervention for transition-aged youth with disabilities. It includes how our research team compensated researchers with DD, clarified team member roles, leveraged the expertise of researchers with DD in using both qualitative and quantitative methods, and integrated technology throughout the research process.

[disabilityresearch]

Go With the FLOo – Authentic Voices in Research With Families Where One or More Parents Have an Intellectual Disability

In this chapter, we discuss the merits and challenges of organic communication within an inclusive, iterative research design through our research project ‘Improving the quality of life of families with parents with intellectual disabilities (IDs) and their children (<12 years) by means of assistive robotics’. We will discuss the research process, its key steps and preliminary findings, as well as how inclusivity of participants was taken along throughout this process. The links between research design, designers and project participants are explored and reflected on. Our positions as researchers within the research process are also reflected upon. We will additionally address the implications of our research for the broader field of inclusive design for assistive robotics and the creative methodologies employed and tailored to the needs of families headed by parents with an ID and their children. In this, we keep a close eye on the difficulties such families face within the context of our research project. Lastly, we reflect on several key markers of collaboration within marginalised communities we encountered in our research.

Keywords

Inclusive research

Family quality of life

Parenting with intellectual disability

Co-researchers

Assistive robotics

Iterative research design