Disability Advocacy Research Articles

Plagued to Death by Ableism: What the COVID-19 Pandemic and the Expansion of Eligibility for MAID Reveal About the Lethal Dangers of Medical and Systemic Ableism in Canada

In this paper, I draw on my research and experience as a disability ethics educator and advocate in order to demonstrate that both Canada’s COVID-19 response and its expansion of eligibility for MAID are symptoms of the medical and systemic ableism that afflicts Canadian society. I conclude with a consideration of the enduring danger that eugenic ableism disguised as autonomy poses for people with disabilities in a Canada where COVID-19 may be waning, but where the contagion of ableism turned lethal through MAID continues to spread.

Message from the Ecumenical Disability Advocates Network Pre‐Assembly Meeting

AbstractThis is the message of the meeting of the Ecumenical Disability Advocates Network held before the 11th Assembly of the World Council of Churches in Karlsruhe, Germany, August–September 2022. The network recognized the God‐given gifts of people with disabilities and the importance of making available those gifts for the body of Christ to function fully. It called on churches to continue to develop and encourage more people with disabilities to be involved in church leadership at local and denominational levels, and for wider representation in WCC assemblies and activities, especially for non‐speaking people: people who communicate through alternative and augmentative devices and people who are neurodivergent, have learning disabilities, or have invisible disabilities.

Best practices for justice: Practitioner views on understanding and helping youth living with fetal alcohol spectrum disorder (FASD)

INTRODUCTION: International studies and New Zealand publications note that care groups, as well as youth and adult justice populations, have high rates of fetal alcohol spectrum disorder (FASD) and other neuro-disabilities, alongside mental health problems and adverse childhood experiences. This research explores justice practitioner views of helping young people living with FASD, especially when they come into contact with the youth justice system in Aotearoa New Zealand. METHODS: Semi-structured interviews were undertaken with 11 practitioners that included social workers, disability advocates, police, legal professionals, and others working in the justice space with youth living with FASD. Stakeholders were asked what practices might help youth do well in the justice space, but also what changes need to happen in systems of health, care, justice or disability in order to ensure those living with FASD have wellbeing. FINDINGS: Practitioners noted widespread ignorance about FASD, resulting in delays in getting appropriate supports for youth living with FASD. Practitioners spoke of the importance of early diagnosis leading to early intervention but how rare that was. Wellbeing of youth was vital but there were too many barriers to fair and equal participation for youth living with FASD in all aspects of society. All systems needed to understand FASD and provide specialist FASD services and supports. PRACTICE IMPLICATIONS: Urgent training and practice guidance is required for all professionals working in the youth justice space. Practice needs to ensure disability rights are upheld to enable flourishing and participation by young people often on the margins of society.

Changing Times

Changing Times

Using virtual reality to implement disability studies’ advocacy principles: uncovering the perspectives of people with disability

One central aim of disability studies is to shift understandings of disability, such that disability comes to be understood as about the social disadvantage/oppression that people face when society does not cater to impairment of body/mind. Nevertheless, there remains a need for more practical tools for disability advocacy, through which to transmit disability studies’ ideas of disability to the general community. Drawing on a qualitative study of the perspectives of 23 people with physical and sensory impairments, this paper proposes virtual reality as an advocacy tool to communicate the principles and beliefs of disability studies. The findings highlight that, due to the nature of the technology, participants feel virtual reality has clear potential as a disability advocacy tool that can facilitate empathy, perspective-taking and positive social change, with a particular focus on how it is the environmental barriers and social attitudes around people that disables them. Points of interest More practical advocacy or informal education tools are needed that align with the principles of disability studies. This research conducted in-depth interviews with 23 people with physical and sensory impairments. The research finds that virtual reality has clear potential as a disability advocacy tool. The participants reported that virtual reality can facilitate empathy, perspective-taking and positive social change. The research finds that virtual reality focuses on how environmental barriers and social attitudes around people with disability disable them, rather than focusing on impairment experiences.

Environmental accessibility for autistic individuals: Recommendations for social work practice and spaces

INTRODUCTION: Research and personal stories from disability advocates have highlighted the significant impact of environmental inaccessibility on an individual’s independence and dignity. This article focuses on accessibility for autistic individuals, specifically the lack of accessibility they experience in built environments due to limited autism awareness among professionals and the public. METHOD: Literature focusing on social work’s role with autistic individuals, autism-friendly approaches, and accessible architecture was reviewed. The social model of disability and critical disability theory were utilised to explore social work’s responsibility to develop and advocate for environmental accessibility for autistic individuals. Through this analysis and the collation of strategies from the reviewed literature, the Environmental Accessibility Infographic was developed. IMPLICATIONS: The Environmental Accessibility Infographic has broad implications. Firstly, it can be applied to any built environment to improve accessibility for autistic people and others with sensory processing needs. Secondly, the accessibility strategies have the potential to positively impact social workers’ practice with autistic people as they can guide change that will ensure their practice is autism-friendly and anti-oppressive.

An Interprofessional Approach to Disability Advocacy.

An Interprofessional Approach to Disability Advocacy.

An accessible and inclusive public transportation management response to COVID-19 through a co-creation process with people with disability. The case of Metro Barcelona

The literature on digitalization and accessibility changes to public transport in response to the COVID-19 pandemic is limited. This paper reports on the urban public transport measures against COVID-19 launched by a Spanish transportation operator, TMB (Transports Metropolitans de Barcelona), to ensure safe journeys where digitalization of services have been intensified. This study responds to the current trend whereby transport operators are quickly digitalizing their transportation services as a response to COVID-19. The outcome of the research is to apply contemporary academic theory to assist transportation managers in designing and enhancing transportation services for this group during the COVID-19 pandemic. While transport operators have improved their services to better address the needs of PwD, these changes are far from universal in approach. At the end of 2020, as part of an academic–industry collaboration with a Spanish transportation operator, 12 PwD, six transport staff members, and two representatives of two disability advocacy associations took part in an inclusive urban transportation research project in the city of Barcelona using the service-dominant (SD) logic co-creation process with PwD through a comparative approach. Specifically, we assessed the value outcome perceived by PwD in their Metro experience when resources resulting from the co-creation process were digital (Study 1) and when they were a combination of digital and non-digital (Study 2). To examine the PwD experience, a qualitative methodology was employed that incorporated online focus groups, ethnographic techniques and post-experience surveys with participants. Study 2 indicted better outcomes and explained how ensuring the appropriate combination of digital and non-digital resource allocation for PwD can improve the public transport experience. Our findings can be used by public transport policymakers for enhancing accessibility to improve public transport experiences during and after the COVID-19 pandemic by implementing digital and non-digital resources.

Rideshare use among people with disabilities: Patterns and predictors based on a large nationally representative survey

People with disabilities have more difficulty getting around due to lack of transportation. Rideshare has the potential to improve mobility by addressing many limitations of fixed-route and paratransit services. However, it is unclear whether people with disabilities have access to and are benefiting from rideshare or how those benefits differ by type of disability. The purpose of this study was to examine rideshare use among people with disabilities and identify personal, household, and community characteristics associated with adoption and frequency of rideshare use. We leveraged data from the most recent US National Household Travel Survey and ran regression models to study the separate processes of adoption and frequency. We found that having a disability of any type was associated with a lower likelihood of adopting rideshare. However, among those who do adopt rideshare, having any type of disability was associated with higher rate of trip taking compared to people without disabilities. Higher frequency of rideshare use among people with disabilities was associated with being in better health, being younger, Black, better educated, employed or student, and living in densely populated areas. Our results show how rideshare behavior differs for people with disabilities compared to those without and the role of assistive devices used by people with different types of disabilities. To develop rideshare as an equitable mobility option, transportation planners, policy makers, disability advocates, and the rideshare industry need to address both the lack of access to rideshare and the socio-economic factors impacting rideshare use among people with disabilities.

Curricular Countermovements: How White Parents Mounted a Popular Challenge to Ethnic Studies

In this critical ethnography, Ethan Chang investigates how white parent-activists organized an oppositional movement to ethnic studies. Drawing on critical whiteness studies, cultural studies, and studies of countermovements, he argues that these parents crafted an oppositional narrative that positioned white, Christian, American boys as victims of ethnic studies curricula. Chang then traces how the parents leveraged this narrative to forge a coalition with disability advocates and to “digitally suture,” or bind, their local ethnic studies countermovement to broader right-wing populist activism. Data includes eleven months of participant observation, 146 public school board testimonies, and twenty ethnographic interviews. The article concludes with a discussion of how studies of curricular countermovements might inform scholarly and activist attempts to divest from whiteness and make ethnic studies available to all students.

Self-advocacy with retailers by people with complex communication needs

Purpose: The researchers aimed to discover what might prevent people with complex communication needs (CCNs) from making complaints if they experienced social exclusion in the retail environment. Method: Qualitative research methods were used to gather data from two groups of participants: adults with CCN and retail customer service staff. Seven adults who used speech-generating devices (SGDs) and who shopped independently were interviewed about their perceptions of retail customer service communication. Nine retail customer service staff were interviewed about their communication with customers with disability. Analysis using grounded theory provided insights into experiences of people with CCN. Result: All participants with CCN had experienced being ignored, patronised and excluded when shopping but faced barriers that prevented them from complaining. Those who did complain exhibited strong self-esteem. Conclusion: Participants with CCN experienced social exclusion because customer complaint mechanisms were inaccessible. Retailers and government agencies monitoring inclusion, as well as speech-language pathologists and disability advocates, place insufficient emphasis on retail communication as a vehicle for social inclusion. The researchers recommend strategies to strengthen self-advocacy by people with CCN and systemic changes to improve accessibility of complaints procedures in the retail sector.

Deconstructing Ableism in Health Care Settings Through Case-Based Learning.

IntroductionPatients with disabilities face health disparities, and providers with disabilities confront professional roadblocks and institutional bias. Yet their experiences are often excluded from medical education, and few case studies address culturally humble care for those with disabilities.MethodsWe created two 1-hour case-based modules on disability and ableism from patient and provider perspectives. Modules were piloted in June 2020 and presented at two conferences in April 2021. Modules included a prereading, introductory disability presentation, and facilitated case discussions. Sessions were evaluated with pre- and/or postsession surveys. Modules were rated on 5-point Likert scales for educational value, professional growth contribution, and interactive/engaging design.ResultsParticipants rated the patient and provider modules 4.5, 4.4, and 4.4 and 4.5, 4.4, and 4.5 for the three categories, respectively. Participants noted that the sessions were insightful and validating and improved their understanding of ableism and the importance of disability curricula. There were significant improvements in participants’ perceptions of ability to discuss ableism's impacts, recognize barriers, identify resource/support gaps for trainees, and advocate. A total of 171 participants completed our modules, with survey response rates of 38% (60 out of 160) and 48% (77 out of 160) for one conference and a postsurvey response rate of 64% (seven out of 11) for the second.DiscussionDesigned for health care trainees, providers, administration, and staff, our sessions introduced concepts of ableism, accommodation, and health care barriers. Our results suggest the modules can contribute to professional growth, understandings of ableism, and participants’ disability advocacy tool kit.

Threats to valuing diverse voices in public debates about disability. A case study from social media*

This study aimed to highlight the threats that use of social media poses to valuing diverse voices and different kinds of expertise about disability in public debates by exploring how disability advocates responded on social media to the evidence presented by researchers to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Data were collected from the social media platform Twitter during the first week of Public Hearing 3 of the Royal Commission in December 2019. Tweets by 48 individuals and 27 representatives of advocacy groups who were not described as academic researchers in their Twitter profile were collected, anonymised, and coded using template analysis techniques. Findings showed that social media commentators were critical of the presence and participation of researchers in the Commission hearings and questioned the legitimacy of their research methods and findings. These commentators stated that researchers should not speak “for” or “about” people with disabilities and rejected evidence that did not resonate with their own individual experience. For the Commission to deliver meaningful recommendations to improve the disability sector, disability policy and the lives of people with disabilities, it is important to value both stories of lived experience and rigorous research evidence. Public discourse that undermines the relationships between researchers and disability self-advocates and advocates may be unhelpful for future collaboration on the development of better policy and practice.

Reflections on Working Together in an Inclusive Research Team

The funding of a research project working with local governments and people with intellectual disabilities led to the establishment of an inclusive research team within a university faculty. The core team consisted of four people, including a design researcher, an architect, a disability advocate and a community researcher/self-advocate. Though there are ample attention and resources devoted to the front-facing parts of a university being visibly inclusive—mostly from a physical access perspective or focussed on the student experience—less attention has been directed to what it means to develop and support inclusive research and aligned work opportunities for people with intellectual disabilities within a university campus. For this reason, the paper explores what it was like for our team that included non-traditional academics and people with intellectual disabilities to work at a university in a design school (not a disability-related research centre). We employ a process of collaborative autoethnography to reflect on how different team members took the lead across different parts of the study. We conclude with a set of tips for the development of more inclusive research teams within university settings.

Supreme Court nominee's support of MH, civil rights applauded

As the first Black woman to be nominated to the Supreme Court awaits the outcome of the process — and following further advancement of her nomination in a vote last week — disability and mental health advocates continue to celebrate Judge Ketanji Brown Jackson's nomination to the highest court and her role as a defender of individuals with physical and mental disabilities and of civil rights issues.

"Knowledge Comes Through Participation": Understanding Disability through the Lens of DIY Assistive Technology in Western Kenya

People with disabilities in Low- and Middle-Income Countries (LMICs) have limited access to digital assistive technologies (ATs). Most ATs in LMICs are manufactured elsewhere and are expensive and difficult to maintain. Do-It-Yourself Assistive Technologies (DIY-ATs) designed, customized, and repaired by non-technical users offer exciting directions in these contexts. We have been exploring the possibilities and challenges of DIY-ATs in Western Kenya, using community-engaged workshops in rural and urban special education schools for the past three years. We present findings from a concluding-stage research activity: a multiple stakeholder focus group where teachers, disability advocates, and representatives from the local government and technology innovation hubs, discussed the possibilities and challenges of addressing disability issues through DIY-ATs in this context. Participants identified opportunities for DIY-ATs for social inclusion, disability assessment, and inclusive education, and shared concerns about their sustainability, safety, and contextual relevance.

장애아동 학대현황, 연구동향 분석 및 제도⋅체계 개선 연구

Objectives The purpose of this study is to identify problems in the institution and support system for children with disabilities, and to look at improvement measures to prevent abuse of children with disabilities by understanding the current status of abuse of children with disabilities (2020), and examining research trends related to abuse of children with disabilities.
 Methods For this purpose, first, this study analyzed the current status by referring to the 2020 Ministry of Health and Welfare s Children s Business Guide and the ‘Survey Results for 2020 Disable of Children Abuse Status analyzed by the Ministry of Health and Welfare and the Central Disability Advocacy Agency. Second, to examine domestic research trends, through the academic research information service published after year 2000 and the National Assembly Electronic Library, this study searched and organized domestic academic journals using academic papers directly related to the abuse of children with disabilities. Third, this study reviewed the system and support system related to the abuse of children with disabilities, and summarized improvement studies.
 Results The research results are first, that in 2020, there were 268 reports of abuse of children with disabilities received from the national advocacy organizations for the rights of people with disabilities, and among them, there were 133 cases of abuse that were adjudicated as abuse, 36 cases of potential risk, 85 cases of non-abuse, and 14 cases under investigation. Abuse cases for children with disabilities accounted for 13.2% of all abuse cases in 2020. Second, studies on children with disabilities who are the victims of abuse are still insufficient. Third, the legal regulation system for children with disabilities should be enacted and strengthened. It is necessary to establish a support system for children with disabilities and systematically implement follow-up measures and interventions for cases of abuse of children with disabilities.
 Conclusions Therefore, this study suggests that it is necessary to seek future directions to prevent abuse of children with disabilities, and to enhance points to improve the current institution and systemic approach.

Editor’s Introduction: Emphasizing Access in Open-Access Education: One Disabled Person’s Plea to Two-Year College English Teacher-Scholar-Activists

Serving as the introduction to TETYC’s special issue on disability in two-year college English, this article centers disability as a necessary consideration for two-year colleges’ mission of open access. Drawing on the work of disability justice activists, advocates, and disability scholars, this introduction frames the work of the special issue’s contributors by tracing the ableist obstacles faced by disabled people in two-year college English and how these ableist structures overlap and intersect with other marginalized identities, thus creating a nesting doll of ableism.

The impact of the Australian Black Summer Bushfires and the COVID-19 pandemic on wellbeing in persons with multiple sclerosis; preparation for future and ongoing crises

Purpose The Australian multiple sclerosis (MS) community experienced two recent major crises, widespread bushfires and the COVID 19 pandemic. We aimed to understand the needs of persons with MS during times of crisis. Materials and methods A consumer-directed mixed-method study. We included an online survey, semi-structured interviews, and a workshop with persons with MS, carers, healthcare professionals, and disability advocates. Data were collected via: (1) 176 people completing online surveys to identify crisis concerns and communications, (2) 29 people completing online interviews on bushfire and pandemic impact, and (3) 13 people participating in a crises-priorities workshop. Descriptive data were calculated for survey response, and a general inductive analytical approach was taken with interview and workshop responses. Results The most significant concerns were bushfire smoke exposure and disease-modifying-medication and susceptibility to COVID-19 (66% and 63% mean concern score, respectively). Interviews indicated crises experiences from the bushfires, and the pandemic overlapped respective of changes in mood and symptom stability. For bushfires, a need for future preparations, and for the pandemic, the benefits of social restrictions, disclosing personal health information and increased care burden were important. Conclusions Multiple crises challenged the MS community but offered lessons for healthcare in future crises. Continued progress in centralised crisis information, with considered use of telehealth and rural healthcare support, is needed. Implications for rehabilitation The MS community showed high concerns for the effect of toxic smoke from the 2019/2020 Australian bushfires and, separately, for the disease-modifying-medication and susceptibility to COVID-19. The MS community placed priority on a crisis management plan for individuals. Reduced social activity due to restrictions was beneficial for MS symptom self-awareness and may help overall fatigue management. Healthcare system preparation must prepare to alleviate increased carer workload at times of crisis.

Disability Advocacy Group via Social Media

The research aims to reveal the efforts of disability groups in Jember Regency to show existence through social media. This type of research is qualitatively descriptive with data sources of observations, interviews, and literature studies. The results showed that the subordination of Disability as a person with special needs fused with the culture of society. Social media is a choice of spaces where the existence of disabilities is connected to each other. Social media offers values, a new paradigm for raising a wide range of lifestyle issues, joint ventures, personal creativity and conditions related to the public domain. The network of prospective regents from people with disabilities has shown the existence of disability groups present in a practical political framework while changing soy stereotypes.