Challenges in Conducting Accessibility Research with Users with Multiple, Profound, or Complex Disabilities

Arthur Theil, Birmingham City University, UK arthur.theil@bcu.ac.uk

Abstract

The lack of involvement of users with multiple disabilities or complex needs in accessibility research is a problem that needs further attention from the field. Designing and evaluating accessible technologies that accommodate the complex, multifaceted needs of users with multiple or profound disabilities can be challenging in many ways. However, the challenges related to conducting accessibility research with underrepresented communities are not discussed enough within the field. Motivated by this pressing issue, this report presents a summary of discussions initiated during the ASSETS 2022 workshop “Multidisciplinary Perspectives on Designing Accessible Systems for Users with Multiple Impairments: Grand Challenges and Opportunities for Future Research”.

Introduction

The field of accessibility research strives to address the needs of individuals with disabilities and create inclusive technologies and accessible systems. However, it is known that research involving users with multiple, profound, or complex disabilities receive less attention compared to studies focusing on users with singular, specific, and well understood disabilities [3].

Conventionally, the accessibility research community has centered most of its efforts on designing and evaluating assistive technologies and systems related to single categories of impairments or disabilities. In other words, accessibility researchers often focus on evaluating technologies and addressing the needs of technology users who experience a single type of physical, cognitive, or sensory impairment at a time.

While this approach is justifiable and contributes to the advancement of the accessibility field, a growing consensus among accessibility researchers is that designing accessible systems and assistive technologies for one impairment at a time contributes to an oversimplification of disability [4]. This simplification does not reflect real-world experiences of a significant number of users of technology who live with multiple or profound disabilities and overlooks their often complex, not well understood needs [2].

The lack of involvement of users with multiple disabilities or complex needs in accessibility research is a challenging problem that needs further attention from the field. Recently, Mack et al [3] surveyed 836 papers published at venues such as ASSETS and CHI. The authors found that only 1% of published research focused on users with multiple disabilities, confirming the urge for more work in this area. However, the challenges related to conducting accessibility research with individuals with multiple disabilities or complex needs are not widely known or discussed within the field.

Motivated by this gap in the field, this report presents a summary of findings and discussions initiated during the ASSETS 2022 workshop “Multidisciplinary Perspectives on Designing Accessible Systems for Users with Multiple Impairments: Grand Challenges and Opportunities for Future Research” [1]. The workshop was held virtually on Sunday 23 October 2022 and had 20 participants from different disciplines and professional backgrounds, including accessibility researchers and practitioners from various academic institutions and organizations across the globe.

Grand challenges and barriers related to accessibility research and users with multiple, profound, or complex disabilities

Although many members of the accessibility research community are interested in developing more research work with underrepresented users, the field faces grand challenges that need to be addressed before substantial progress can be noted. A significant part of the discussions during the ASSETS 2022 workshop were related to challenges faced by researchers when attempting to conduct research with communities of users with multiple, profound, or complex disabilities. Developing technologies and accessible systems that take into consideration the multidimensional needs of those users was also a significant challenge shared by many participants during the workshop. A summary of primary grand challenges identified during the workshop as fundamental to be addressed by the accessibility community is summarized below:

Lack of standards related to methods

The accessibility research community has made significant progress in developing guidelines and standards for specific disabilities, such as visual or hearing impairments. However, when it comes to multiple or underrepresented disabilities, the lack of standardized approaches and guidelines can make it more difficult to conduct comprehensive research that addresses the specific needs of this population. The collection and analysis of data from participants with multiple, profound, or complex disabilities can be challenging, particularly when it involves collecting data with non-verbal users.

Individuals with multiple, profound, or complex disabilities often comprise a smaller proportion of the overall disability population compared to those with singular disabilities. As a result, obtaining a representative sample size for research studies can be more challenging. Accessibility researchers, on the other hand, often choose to focus on larger disability groups to ensure statistically significant findings or to address a broader range of accessibility needs. A challenge related to publishing research with atypical users is that reviewers may scrutinize the sample size and question the representativeness of the participants, emphasizing the importance of obtaining a sufficiently diverse and representative sample to draw meaningful conclusions.

Lack of Standards related to teminology

Furthermore, the lack of standardized terminology in the accessibility field regarding “multiple”, “severe”, “profound”, or “complex” disabilities also impose additional barriers for advancing the research in this area. Without standardized terminology, there can be ambiguity and inconsistency in how researchers define and describe individuals with multiple, profound, or complex disabilities. This lack of clarity can hinder effective communication and understanding among researchers, practitioners, and policy makers. It becomes difficult to compare and synthesize findings across studies or develop a cohesive understanding of the population under study.

Based on the discussions initiated during the workshop, we found that different communities of researchers use different terms (e.g. multiple, profound, severe, complex) interchangeably when referring to individuals with challenging, multidimensional, or atypical access needs. Many workshop participants shared that finding related work in this field is particularly difficult. This is a limiting aspect of conducting research in this field because standardized terminology facilitates the aggregation of data from multiple studies, allowing for meta-analyses and systematic reviews. This process helps identify patterns, trends, and gaps in the existing accessibility literature. However, without consistent terminology, it becomes challenging to synthesize data across accessibility studies or to conduct comprehensive analyses, limiting the accumulation of knowledge in the field.

Complexity and plurality of needs, requirements, and experiences

Accessibility research involving individuals with multiple, profound, or complex disabilities can be more challenging due to the complexity and diversity of their needs, which are often overlooked and misunderstood. It requires a comprehensive understanding of various disabilities and their interactions, making it more difficult to plan and conduct studies that effectively address their specific requirements, or to design accessible technologies that meet their multidimensional needs.

Designing and evaluating accessible technologies that accommodate the complex, multifaceted needs of users with multiple or profound disabilities can be challenging. It may require providing high-level customization options, adaptable interfaces, and flexible functionalities that can be tailored to individual requirements that are often not well defined or understood by the accessibility community. Although the accessibility field understands that users with multiple or complex disabilities benefit from assistive technologies that can be customized or adapted to their specific needs, this level of understanding around specific requirements and needs often requires extensive research and collaboration with users and experts in other fields.

Resource, expertise, and funding limitations

Conducting accessibility research involving users with multiple, profound, or complex disabilities requires significant resources, including funding, time, access to equipment and expertise. Accessibility researchers often face limitations in securing adequate funding to conduct comprehensive studies involving users with complex disabilities and challenging needs, which can result in a narrower focus on specific disability types. Advocacy and social policies play a crucial role in highlighting the needs of various underrepresented disability communities. Most workshop participants agreed that raising awareness and advocating for research that specifically focuses on the unique needs of individuals with multiple, profound, or complex disabilities is a pressing agenda that needs to be pushed forward. Increased advocacy and policy efforts can help drive attention, focus, and resources towards conducting accessibility research with these communities.

Call to multidiciplinary action and future work

It is important to note that while accessibility research involving users with multiple, profound, or complex disabilities may be comparatively overlooked, our ASSETS 2022 workshop was able to demonstrate that there are researchers and organizations working to address this gap. As this community grows and the accessibility field continues to evolve, there is potential for greater focus on understanding and meeting the needs of users with complex disabilities.

The discussions initiated during the workshop confirmed that a more inter-and-multidisciplinary approach is needed in the accessibility field. Given the multidimensional nature of multiple and profound disabilities, accessibility studies and initiatives that involve interdisciplinary collaboration are fundamental, such as collaborations between experts in different disability fields, computer scientists, engineers, educators, or other relevant disciplines. Such collaborations can enhance the depth and impact of the research.

Our community should continue to explore new methods, emerging technologies, and novel applications that address the unique needs of users with multiple or complex disabilities. A more participatory approach that actively involves different communities of users with underrepresented disabilities is also needed. Following the fruitful outcomes of the inaugural edition of the workshop, we plan to strengthen the discussions initiated last year and will propose future collaborative initiatives that focus on this important overlooked topic in accessibility research.

Acknowledgments

We would like to acknowledge the immensurable contributions from the ASSETS 2022 workshop co-organizers: Chris Creed, Sayan Sarcar (Birmingham City University), Mohammed Shaqura, Raymond Holt, Stuart Murray (University of Leeds), and Nasrine Olson (University of Borås). We would also like to thank all workshop participants for the valuable discussions and participation.

References

1. Arthur Theil, Chris Creed, Mohammed Shaqura, Nasrine Olson, Raymond John Holt, Sayan Sarcar, and Stuart Murray. 2022. Multidisciplinary Perspectives on Designing Accessible Systems for Users with Multiple Impairments: Grand Challenges and Opportunities for Future Research. In Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '22). Association for Computing Machinery, New York, NY, USA, Article 105, 1–6. https://doi.org/10.1145/3517428.3550405
2. Arthur Theil, Lea Buchweitz, Annika S. Schulz, and Oliver Korn. 2022. Understanding the perceptions and experiences of the deafblind community about digital games. Disability and Rehabilitation: Assistive Technology. https://doi.org/10.1080/17483107.2021.2008026  
3. Kelly Mack, Emma Mcdonnell, Dhruv Jain, Lucy Lu Wang, Jon E. Froehlich and Leah Findlater. 2021. What Do We Mean by “Accessibility Research”?: A Literature Survey of Accessibility Papers in CHI and ASSETS from 1994 to 2019. In CHI Conference on Human Factors in Computing Systems (CHI '21), May 08-13, 2021, Yokohama, Japan. ACM, New York, NY, USA, 24 Pages. https://doi.org/10.1145/3411764.3445412
4. Megan Hofmann, Devva Kasnitz, Jennifer Mankoff, and Cynthia L Bennett. 2020. Living Disability Theory: Reflections on Access, Research, and Design. In The 22nd International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '20). Association for Computing Machinery, New York, NY, USA, Article 4, 1–13. https://doi.org/10.1145/3373625.3416996   

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