Disability Community Research Articles

Beyond Vision Impairments: Redefining the Scope of Accessible Data Representations.

The increasing ubiquity of data in everyday life has elevated the importance of data literacy and accessible data representations, particularly for individuals with disabilities. While prior research predominantly focuses on the needs of the visually impaired, our survey aims to broaden this scope by investigating accessible data representations across a more inclusive spectrum of disabilities. After conducting a systematic review of 152 accessible data representation papers from ACM and IEEE databases, we found that roughly 78% of existing articles center on vision impairments. In this article, we conduct a comprehensive review of the remaining 22% of papers focused on underrepresented disability communities. We developed categorical dimensions based on accessibility, visualization, and human-computer interaction to classify the papers. These dimensions include the community of focus, issues addressed, contribution type, study methods, participants involved, data type, visualization type, and data domain. Our work redefines accessible data representations by illustrating their application for disabilities beyond those related to vision. Building on our literature review, we identify and discuss opportunities for future research in accessible data representations.

Aphasia centre science: What makes an aphasia centre work?

ABSTRACT Background People with aphasia are often discharged from rehabilitation services with chronic communication disability, ongoing challenges in participation, and limited access to long-term support. Aphasia centres aim to fill this gap through the provision of dedicated aphasia programming within a social model of care. Preliminary research suggests that aphasia centres are effective in improving linguistic and psychosocial outcomes, however, the mechanisms by which this occurs are less clear. Aims (1) To describe the structure and operation of aphasia centres internationally; (2) To describe the factors perceived to contribute to aphasia centre effectiveness and sustainability. Methods and Procedures Explanatory, sequential mixed-methods design. A quantitative online survey was used to gather information about the structure and operations of existing aphasia centres. Data were analysed using descriptive statistics. Semi-structured email interviews explored participant perceptions of factors contributing to centre outcomes and sustainability. Interview data were analysed using inductive thematic analysis. Outcomes and Results Fourteen aphasia centres were included in the sample, and all reported offering therapy that was predominantly activity and participation focused and group based. In terms of staffing profile, allied health professionals, specifically speech pathologists, were employed in the greatest numbers. An “effective” centre was conceptualised as one that meets the complex needs of consumers. Committed staff, a sense of community, person-centred service provision and consumer involvement were perceived to be key factors influencing effectiveness. Diversification of funding was perceived to be critical to sustainability. Conclusions Involving consumers in centre operations, facilitating social connectedness and community networks and diversifying funding sources was perceived to contribute to service effectiveness and sustainability. Financial constraints and sufficient staffing remained globally recognised barriers to continued operation.

"I Want to Publicize My Stutter": Community-led Collection and Curation of Chinese Stuttered Speech Data

This paper documents the process undertaken by StammerTalk , a grassroots community of Chinese-speaking people who stutter, to autonomously collect and curate stuttered speech data for more inclusive speech AI models. While people with disabilities are often excluded or treated merely as the subjects of AI data collection, our work introduces a new model for disability data collection in which the disability community exerts agency and control over their personal data and data-driven experiences. Our ethnographic data show that community-led data collection not only produces data needed to represent the community in AI systems, but also empowers the community and its members, by embracing - rather than concealing - stuttering and stutterer identity, and strengthening the social bonds of the community. Recognizing the lack of adequate socio-technical infrastructure for community-led, grassroots data collection, we discuss practical challenges, as well as the strategies and factors for communities to succeed in similar endeavors.

Please Understand My Disability: An Analysis of YouTubers' Discourse on Disability Challenges

Video-sharing platforms offer a unique avenue for people with disabilities (PWDs) to highlight their experiences, including the challenges and accessibility barriers they face. While creators with disabilities effectively use these platforms to share their life struggles and advocate for societal changes, the scope of research exploring the nature of the discourse activities related to disability challenges remains limited. Our study addresses this gap by conducting a comprehensive qualitative content analysis of 468 videos posted by YouTubers with a range of disabilities, including vision, speech, mobility, hearing, and cognitive and neural impairments. Our findings reveal a predominant discussion on stigma and lack of support. YouTube is also used to share difficulties related to communication and systemic problems. Creators with disabilities also share experiences with technologies and public and private environments, through which they discuss accessibility issues and solutions. Building on our analysis, we propose future research directions aimed at enhancing the experience and support for disability communities on video-sharing platforms.

Factors affecting negative and positive emotions among spouses caring for patients with psychotic or bipolar disorder.

Spouses experience conflicting emotions when caring for partners with severe mental illnesses. They can have negative emotions while also regarding caregiving as positive and may develop a better marital relationship through the caregiving process. This study investigated factors affecting the negative and positive emotions of husbands and wives acting as caregivers of their spouses with severe mental illnesses. An online nationwide survey of 166 spouses caring for partners diagnosed with schizophrenia, schizoaffective disorder, or bipolar disorder was conducted. Caregivers' negative and positive emotions, personal and role strains in the care burden, sense of coherence, and patients' disabilities in family communication were assessed. We conducted a series of hierarchical multiple regression analyses to evaluate the effects of these factors on the emotions of husbands and wives separately. Among the 166 spouses, 112 (67%) were husbands and 54 (33%) were wives. Husbands were caregivers to 1.4 times as many individuals diagnosed with psychotic disorder as were wives. The negative emotions of husbands were linked to personal strain, whereas those of wives were associated with patient disability in family communication. Sense of coherence was the only factor predicting positive emotions for both sexes. Support for spousal caregivers should be adjusted according to sex. A reduction in husbands' personal strain can alleviate their negative emotions, whereas wives' negative emotions can be relieved by improving communication within their families. Regardless of sex, a higher sense of coherence level has the potential to suppress negative emotions and enhance positive emotions.

Nonnormative Communication and Metaphors of Silencing in Two Postcolonial Texts

Brian Friel’s Translations and Aminatta Forna’s Ancestor Stones both use a character with a speech impairment as a metaphorical representation of silencing and its limits under colonialism. When read purely as metaphors, as in the extensive body of criticism on Friel’s play, these characters offer competing visions of what is lost and what is not when precolonial cultures and languages are suppressed. However, a purely metaphorical reading reinforces both the broad tendency to use disability to represent other forms of oppression and the specific tendency to use communication disabilities to represent the supposed silencing of marginalized people, both of which reaffirm ableist conceptions of disability as deficiency and pull our attention away from the individuality of the disabled characters. A closer reading of each text shows the flaws in a strictly metaphorical reading, as both characters complicate the idea that their inability to vocalize is a form of silence, as they demonstrate that people with communication disabilities can have much to tell people and many ways of doing so. This poses a challenge to the overreliance on voice and voicelessness as metaphors in discussions of marginalization.

Imagining alternative futures with augmentative and alternative communication: a manifesto.

This manifesto seeks to challenge dominant narratives about the future of augmentative and alternative communication (AAC). Current predictions are mainly driven by technological developments-technologies usually being developed for different markets-and are often based on ableist assumptions. In online conversations and a discussion panel at the 2023 International Society for Augmentative and Alternative Communication conference, we explored alternative futures by adopting different starting positions. Our case is presented under five headings: questioning the dominance of predictions that artificial intelligence and brain-computer interfaces will define the future of AAC; resisting disability being framed medically, as a problem to be solved, yet acknowledging both the pleasures and pains of being disabled; declaring that people who use AAC-as cyborgs of necessity rather than choice-should have choice and ownership of our technologies; challenging notions of independence as the necessary end goal for disabled bodies and considering interdependence as a human right; imagining alternative futures in which all people who use AAC are accepted and embraced for our communication and self-expression. This manifesto is an invitation for further discussion, and we welcome responses. While our focus is AAC, and three of the authors use AAC, we believe that our stance could be relevant to other disability communities in turn. This paper is about who gets to imagine disability futures and whose voices are left out. It is about how uncritical these futures can be, often presuming values that disabled people, in all their diversity, may not share.

Machine learning for predictive AAC: Improving speech and gesture-based communication systems

Augmentative and alternative communication (AAC) systems play a crucial role in supporting individuals with severe communication disabilities by providing accessible means of expression and engagement. However, many conventional AAC devices rely on manual input or basic predictive functions, which can limit communication efficiency and responsiveness. The application of machine learning (ML) to AAC offers new opportunities to enhance these systems, enabling them to provide faster, more accurate, and contextually relevant communication assistance. Advances in ML, particularly in predictive text, speech recognition, and gesture interpretation, allow AAC systems to adapt more intuitively to user needs, predicting intent based on usage patterns and multimodal data, such as voice and gestures. Current research highlights the potential of ML to address key gaps in AAC technology by creating more responsive, personalized systems that align with individual user behaviours. This study proposes a novel ML framework designed to integrate these capabilities, promising improvements in communication speed, user autonomy, and accuracy. By addressing the challenges and limitations of traditional AAC devices, this research aims to advance accessible communication solutions that empower users and improve quality of life.

Family Support and Disability Policies: Perspectives of Siblings of People With Intellectual and Developmental Disabilities

Given the critical shortage of community providers and a growing aging population of individuals with intellectual and developmental disabilities, siblings are expected to provide caregiving for their brothers and sisters with intellectual and developmental disabilities. However, family support and disability policies often do not acknowledge siblings as caregivers who need support, and thus, do not include siblings’ voices. In this study, we conducted a national, web-based survey to examine the perspectives of 611 siblings of individuals with intellectual and developmental disabilities. Specifically, we examined their perceptions toward family support and disability policy as well as their knowledge and relevance of such legislation. Overall, siblings were not well-informed with relevant family support and disability policies. Furthermore, the knowledge of policies was only associated with their feelings of connectedness to the disability community. Based on these findings, it seems necessary that siblings are included in future efforts to shape family support and disability policy.

Facilitating equity for and by Cambodian young adults with lifelong communication disabilities: the experiences of a communication advocacy group

Facilitating equity for and by Cambodian young adults with lifelong communication disabilities: the experiences of a communication advocacy group

Co-designing accessible tourism with the disability community for embodied choice

Reflective of ‘Nothing about us without us’, this paper contributes to contemporary methodological approaches to research and practice about people with disability (PwD) through examining a case of policy co-design with PwD and disability advocacy organisations. Contemporary mobilities of PwD travelling to experience natural and protected areas requires whole-of-jourrney approaches. A narrative review of academic and grey literature provides insight into current conceptualisations of disability, accessible tourism, and stakeholder involvement. What becomes apparent from this review is the lack of involvement of PwD beyond often tokenistic consultation. Similarly, in academic literature, there are few examples of active engagement of PwD beyond being the subject of the research, where ableist perspectives consider PwD as ‘vulnerable’. Following the narrative reivew, a case study of an online policy-driven co-design process implemented by a protected area agency is present. The case explores the complexity, and benefits, of authentically working with PwD, to listen to their voices and lived experiences, to understand their needs across a whole-of-journey approach, so that they too may enjoy the benefits derived from visiting natural areas. This co-design process should be applied in future accessible tourism research to avoid further marginalising of PwD, understanding their abilities and agency.

Undergraduate Research Science Capital: Measuring capacity to engage in research.

Undergraduate research has been identified as a high-impact educational practice. However, despite the body of evidence on the outcomes of undergraduate research, few studies have focused on the influences students face regarding participation. Developed using Science Capital and Social Cognitive Career Theory, a survey comprised of potential influences to undergraduate science research participation was disseminated to science majors at four R1 institutions in the Southeastern United States. Participation rates across several demographic factors and effect of participation influences were analysed. Results reveal a significantly greater proportion of the Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) and disability communities indicating participating in research than their peers. Additionally, fourteen participation influences were identified as having a significant difference in their level of influence to the ability to participate in research between researchers and non-researchers. These include professor influence, interest in research, interest in science, coursework in the major, and major all being rated as opportunities with a significant difference of effect between researchers and those who have not yet participated in research. The results of this study will be beneficial for science departments and their respective institutions to improve the equity of access to their undergraduate research experiences.

Opportunity lost: addressing DEI in academic conference design practices

PurposeAttending academic conferences is important for career progression. However, conferences can be experienced as exclusionary by historically marginalised groups. Non-attendance through exclusionary event design thus has far-reaching consequences, which is a social and structural justice issue. This research therefore aims to shine a light on event design in academic conferences, and its relationship to diversity, equity and inclusion (DEI).Design/methodology/approachThrough empirical study, we address the question “Are academic conferences communicating a commitment to DEI for delegates from historically marginalised groups, and if so, how?”. Using a content protocol (Loh et al., 2022) and signalling theory (Bradley et al., 2023), we analyse the publicly available conference materials of 70 tourism, leisure, events and hospitality academic conferences planned or convened between 2023 and 2025 to assess DEI discourses and practices for evidence of conference design that fosters inclusivity, belongingness and therefore addresses justice.FindingsReferences to one or more elements of DEI were found in the discourses of around one quarter of the conferences. However, for BIPOC [1], precarious academics, those from the LGBTQIA+ or disability communities, those with caring responsibilities, those on low or no incomes or with visa requirements, and to a large degree still for women, there were few signs within conference design practices that could be construed as conveying a welcoming culture. We therefore argue that academic conferences within the fields of tourism, leisure, events and hospitality are perpetuating inequity, exclusion and injustice through failing to give full consideration to whom their event design practices are inviting to participate. This is an opportunity lost, and we provide a checklist for conference organisers to help them communicate that historically marginalised academics are welcome and belong at their event.Originality/valueWe believe this is the first study to take a DEI lens to an examination of academic conferences, and apply a content protocol and signalling theory as analytic tools in the process.

#DisabledBodyPositivity: A content analysis of body positive Instagram posts in the disabled community

Accumulating research has supported the potential for body positivity content on Instagram to challenge predominant appearance ideals and promote a healthier body image. However, research in diverse groups is lacking – in particular, individuals with a disability have largely been neglected. Using #Disabled #BodyPositivity, this analysis examined the content of 623 body positive posts on Instagram. Posts were coded for body and appearance-attributes and themes relating to positive body image, appearance ideals, disability, and health. Posts were also examined for contradictory messaging (i.e., body positivity themes alongside the pursuit of appearance ideals). Results demonstrated an inclusion of diverse body and appearance-attributes, however, posts predominantly depicted young, White women. While only 45.06 % of posts contained at least one positive body image theme, our results identified positive themes specific to the disabled community, such as disability pride and activism. Besides the significant relationship between the presence of body positive themes and body and food shame, contradictory messaging was not found. Future research examining the effects of exposure to body positivity messaging on social media among those with a disability is warranted.

Effectiveness of a Disability Liaison Officer service in a metropolitan emergency department.

To identify the influence of a Disability Liaison Officer (DLO) service in the ED setting on people with disability (PWD). For this project, PWD included adults with communication disability, intellectual disability or autism spectrum disorder. This was a single-centre retrospective cohort study, at an adult major referral ED in Melbourne, Australia. Patients were eligible for inclusion if they were ≥18 years of age, presented to the ED between 1 April 2022 and 30 April 2023, and had a disability alert in their electronic medical record. Eligible patients were divided into two cohorts: (i) patients managed using standard ED care and (ii) patients managed using DLO model. ED length of stay (LOS) was the main outcome measure. After adjusting for baseline differences in age, initial GCS and disability type, the DLO service was associated with earlier disposition from the ED (adjusted hazard ratio [aHR] 1.44; 95% confidence interval [CI]: 1.23-1.69; P < 0.001). For the subgroup of patients discharged directly from the ED, the association of DLO service and earlier disposition remained statistically significant (aHR 2.47; 95% CI: 1.83-3.33; P < 0.001). Among patients admitted to the emergency short stay unit (aHR 1.67; 95% CI: 0.99-2.80; P = 0.06), and those admitted to inpatient wards (aHR 0.89; 95% CI: 0.65-1.23; P = 0.50), there was no significant association of the DLO service with time to disposition. The DLO service was associated with a reduction in ED LOS for PWD. Further assessment of the service using patient- and carer-reported outcome measures and cost-effectiveness studies are indicated.

The Architectural Intersection of Museums and Disability Policy

The way in which people with disabilities devise methods to move through the world and faced barriers before architectural modifications evolved based on legislation intersects with the architectural preservation of culturally significant sites, specifically museums. By excluding the disabled community in museum spaces, it perpetuates the ableist mindset of society further by limiting information, creating a disparity in cultural climate and community belonging. How do museums preserve historical significance, while also creating a space for all? In order to devise an accepting space within museums and go beyond the idea of inclusion, people within public spaces need to strive to understand the way that individuals interact with the institution, while adjusting the space in an inherent way to include access for all beyond the legal policy.

Synthesizing a three Layer Architectural Framework for Adaptive Intelligent User Interfaces for the Disabled Community

Knowledge acquisition has been a bottleneck in the design for efficient User Interfaces for Disabled Community. The best suited interfaces have been oriented towards adaptability that is the User Interface needs to adapt and configure itself according to the needs and likes of the user. Such user interfaces can arouse interest in the mind of the disabled and motivate them to become an asset to the nation, and use their intellect to contribute to the society. This study pioneers an innovative approach, aiming to develop User Interfaces (UIs) for the Disabled Community. The research introduces a comprehensive three-layer architectural framework employing Learning, Trust, and Knowledge Models. Unlike conventional approaches, this Architectural Framework is designed to learn not only from the Disabled but also from their Assistants/Guides, employing principles of knowledge engineering. While the former offers static context, the latter contributes dynamic insights by observing behaviors, responses, and actions of the Disabled. This symbiotic relationship forms the foundational basis for developing intelligent adaptive UI’s that not only accommodate but actively engage and motivate the Disabled Community. The proposed research methodology involves a meticulous gathering of data through extensive user studies and interactions. By using the Human Computer Interface technology, the study aims to develop a robust framework capable of comprehensively understanding the preferences, needs, and nuances of disabled users. The expected outcomes include the development of a prototype adaptive UI, validated through rigorous testing and feedback from the disabled community. Additionally, the study anticipates contributing a comprehensive set of guidelines and best practices for designing intelligent adaptive UIs, ensuring comfort and ease for impaired users, boosting their confidence and encouraging greater involvement in socio-development activities.

The role of cerebellar FOXP1 in the development of motor and communicative behaviors in mice.

The gene FOXP2 is well established for a role in human speech and language; far less is known about FOXP1. However, this related gene has also been implicated in human language development as well as disorders associated with features of autism spectrum disorder (ASD). FOXP1 protein expression has also recently been identified in the cerebellum-a neural structure previously shown to express FOXP2 protein. The current study sought to elucidate the behavioral implications of a conditional knock-out of Foxp1 using an En1-Cre driver, which is active in the entirety of the cerebellum and a subset of neurons in the midbrain and spinal cord, in mice using a test battery including motor tasks associated with cerebellar dysfunction, as well as communicative and autistic-relevant behaviors. Male and female mice with a conditional knock-out (cKO, n = 31) and wildtype littermate controls (WT, n = 34) were assessed for gross and orofacial motor control, motor-coordination learning, locomotion, social behavior, anxiety, auditory processing and expressive vocalizations. Overall results suggest Foxp1 plays a specific role in the development of communicative systems, and phenotypic expression of disruptions may interact with sex. Robust motor deficits associated with Foxp1 protein loss may particularly affect vocalizations based on significant orofacial motor deficits in cKO subjects could also contribute to vocalization anomalies. In summary, the current study provides key insights into the role of Foxp1 in cerebellar function and associated behaviors in mice, with implications for an improved understanding of communicative and motor-based neurodevelopmental disabilities in humans.

The COVID-19 experience through the lens of disability Twitter: A qualitative analysis.

The societal response and constraints of the COVID-19 pandemic reinforced ableism for disabled people who were yet again treated as an afterthought in society. Systemic ableism impacted their well-being, access, and ability to be active members of their community. Disabled experiences and voices must be heard and amplified to improve preparedness and address ableism. Disability Twitter is one avenue where the disability community can collectively listen and support one another. These voices can and should be used to influence policy and practice. This study used Disability Twitter to represent and honor the experiences of the disability community, using the COVID-19 pandemic as a moment in time. Qualitative thematic analysis of U.S.-based Twitter posts was conducted using retrospective social media posts. A total of 238 initial tweets from January 1, 2020 and September 30, 2022 were analyzed by the research team. Five themes were observed including ableism, devaluation, worthiness, act of reclaiming, and emotion. Disabled people reported instances of ableism, devaluation, and victimization by individuals, systems, and government entities throughout the pandemic. Disabled individuals utilized Twitter to share their collective experiences, urging society to address and respond to the needs of the disability community. Using social media to center the perspectives of the disability community can invoke system-wide change and inform policies. Implications for combating systemic ableism and promoting allyship for clinical professionals, research scholars, and educators are provided. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

A lightweight and secure authentication protocol for visually impaired and handicapped people in the telehealth system

Sensors and wearable technology are used to accumulate health-related data from the visually impaired (VI) and other special persons. This health-related data is disseminated via an open network channel, which poses numerous threats and requires rigorous attention for its protection. An appropriate security framework must be implemented on both the sender and the recipient sides to ensure the privacy and security of sensitive medical information for VI and disabled persons. The telehealth system will then benefit the VI and disabled people by improving their quality of life, telemonitoring, saving time and money, providing online support, and increasing the degree of trust and reliance on the system and the treatment of doctors. These practical benefits are not just theoretical but potentially life-changing for the VI and disabled community. Strong and flawless mutual authentication is necessary for the telehealth system to secure and preserve the privacy of VI and disabled people. Therefore, this article proposes a privacy-preserving asymmetric-based, lightweight, and robust security framework for the telehealth system operationalized for VI and disabled people. The proposed security framework alleviates all threats to sensitive information and preserves the privacy and security of the whole telehealth system. The security of the proposed framework has been verified through a well-known Real-Or-Random (RoR) model and simulated through a ProVerif software verification toolkit, while the performance analysis has been tackled by measuring computation, storage, and communication costs. The comparative analysis result revealed that the proposed framework outperforms its competitors, further reinforcing the hope about its potential impact.