Lived Experience Of Disability Research Articles

Filling literary gaps of convention

ABSTRACT This article is an interrogation of gaps which hide sex in literature. Avoiding the narration of sex is a persistent narrative convention in much literary fiction, and these gaps offer an opportunity for creative writing to intervene. My critical enquiry is grounded in my creative writing practice, which is further grounded in lived experience of disability. As an embodied orientation to the world and a critical concept, disability can be productively used as a methodology which challenges ingrained attitudes to embodiment and capacity, thereby, according to Siebers, ‘defamiliariz[ing] how we think currently about sex’, and how we write it. Following a theoretical elaboration of the presence of absence in narrative, I present an original story ‘How to be an Other’, which plays with Lorrie Moore’s ‘How to be an Other Woman’ and which offers a practical application of how gaps can be generative of new ways of thinking.

Infrastructures of support: Australian young people’s perspectives on caring during the pandemic and future disability and care policy reform

ABSTRACT Today’s young people are critical stakeholders in the future of social care policy and services, but their voices and perspectives are often overlooked in public debate and deliberation on disability services, aged care, and support for family carers. This article reports on a pilot project involving focus groups with young people in the Australian Capital Territory, Australia. Participants included young people with caring roles for family members with disability and chronic illness and young people without lived experience of disability or care. The article explores how young people’s understandings of care were profoundly shaped by their experiences during the COVID-19 pandemic. Lockdowns, health concerns and media coverage heightened their awareness of the diverse ways in which people support each other in families and communities and the systemic issues afflicting the formal care sector. The article draws on the concept of care as critical social and economic infrastructure to frame participants’ proposals for future reform of policy and services. The findings indicate that young people both with and without current care roles want to see significantly more investment in the care and support sectors, and these groups view meaningful engagement with service users as key to improving access to needed supports.

Participating together in CP-ACHIEVE: Experiences, opportunities and reflections from a collaborative research team of people with lived experience of cerebral palsy and health care professionals

The Australian Centre for Health, Independence, Economic participation and Value Enhanced care for adolescents and young adults with Cerebral Palsy (CP-ACHIEVE) is a Centre of Research Excellence (CRE), funded for 5-year by the National Health and Medical Research Council of Australia. The vision of CP-ACHIEVE is an Australia where people with cerebral palsy receive excellent healthcare throughout their lives and live in, and contribute to, supportive communities that welcome and enable their participation. CP-ACHIEVE began with the ethical commitment to bring together people with lived experience of cerebral palsy, researchers, and health professionals to develop and conduct research informed by, and relevant to, people with cerebral palsy and their allies. From inception, co-research and collaboration with (not ‘to’ or ‘about’) young people with cerebral palsy (10 to 30 years of age) and their families has been central to our work. In this paper, we describe the CP-ACHIEVE values, structure and strategy for this approach, and its implementation at each stage of the research process. We then provide an example of the strategy in action, using a qualitative exploration of CP-ACHIEVE’s Participation Theme team’s experiences of collaboration and involvement as co-researchers. Active participation in research for young people with lived experience of cerebral palsy and their families is a fundamental human right, based on their right to be active agents in decisions that affect them. In this paper we explore how our collaborative approach, and the integration of diverse views, has enhanced the relevance, quality, usefulness, and translation of our research. We also describe (i) the structural elements of our research group that have facilitated our work together, (ii) our challenges, and (iii) how the ownership of our research by people with cerebral palsy is driving future research directions and empowering involvement of people with lived experience beyond CP-ACHIEVE. We offer this knowledge and our experiences to assist other research teams in their journeys towards collaborative research alongside people with lived experience of disability.

Workplace inclusion: Exploring employer perceptions of hiring employees with disability

AbstractThe unemployment rate for people with disability in Australia has remained unchanged for decades, despite policy and strategy focus. Therefore, understanding perceptions of those making hiring decisions is important. This research used a qualitative approach interviewing 13 participants who made hiring decisions. Reflexive thematic analysis uncovered four themes about altruistic hiring motivations, organisational culture barriers, sharing of disability during the hiring process, and negative emotions towards disability. There were distinct perspectives between people with and without experience of disability. People without experience tended to encourage early sharing of disability in the hiring process, cite organisational culture as a barrier, and shared strong negative emotions towards people with disability. People with experience of disability tended to prioritise autonomy of people with disability in sharing during the hiring process, and an intersectional approach to improve organisational culture. Regardless of disability experience, participants tended to share altruistic motives for hiring people with disability, despite this potentially contributing to the maintenance of power dynamics. Future research should continue to explore personal attributes and decision making of employers, ideally conducted by people with lived experience of disability. Please refer to the Supplementary Material section to find this article's Community and Social Impact Statement.

Understanding the interaction between support and social participation for people with physical disabilities: a scoping review protocol

IntroductionAround the world, the disability rights movements and the social model of disability have placed emphasis on the importance of social participation for people with disability. People with physical disability...

PPIE in a technical research study: Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability.

Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability. We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability. Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1-preference for the biopsychosocial model, 1.2-'Reviewing' instead of mapping survey questions and 1.3-comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1-connecting preparation and operation, 2.2-inclusivity and adjustments in activities and 2.3-feedback for improving activities and (3) real-world applications-targeted awareness raising, subthemes: 3.1-who, where, what and how to share activity findings and results, 3.2-sharing with human resource and equality, diversity and inclusion professionals. Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. We involved members of the public with lived experience throughout this study-co-design, co-facilitation, collaboratively mapping the disability or disability-related survey questions into conceptual models of disability, evaluation of the activities, co-analysis and co-authorship.

Community-based participatory-research through co-design: supporting collaboration from all sides of disability

BackgroundAs co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the ‘why’ of using co-design is well understood, there is limited literature on ‘how’ to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices.MethodsA telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing.ResultsThe findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers’ perspective and the researcher’s and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings.ConclusionsThe authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design.

Identifying priorities for Australian disability research using Q methodology

BackgroundGlobally, there are over an estimated one billion people with disability. Research priorities with a focus on diagnosis and treatment of conditions or policy and service initiatives, traditionally decided by researchers, may not align with priorities of those with lived experience of disability. ObjectiveTo explore and inform disability research for Australia, including perspectives of people with disability. MethodsAs part of a research program, we used Q methodology to explore “what should guide the Australian research agenda?” People with disability, their families, community organizations and researchers were purposively recruited and sorted 25 statements, developed iteratively using data collated from systematic research mapping and a prior consultation process. The sorting grid ranged from −4 to +4, according to “Which topics should guide disability research the least to the most?” Factor analysis revealed four distinct but interrelated participant viewpoints. Results52 participants (65 % female, aged 18–65+ years, 37 % people living with disability), sorted the statements. Viewpoint 1 – design and delivery of services across the lifespan. Viewpoint 2 – understanding the diverse experience of those with disability. Viewpoint 3 – designing systems to address impacts of disability for the individual, their families and society. Viewpoint 4 – addressing mental health for those with disability no matter where they live. ConclusionThese viewpoints focused on design and delivery of services to address the impacts of disabling environments and attitudes on individuals living with impairments, their families and society. The four viewpoints provide a framework for future disability research in consultation with those with lived experience.

The Role of Trust, Respect, and Relationships in Maintaining Lived Experience and Indigenous Authority in Co-Designed Research with People Living with Disability

Co-design of research can evolve organically when the questions to be asked have their roots deep1 in the soil of partnerships based on trust, respect, and a common vision for equity and inclusion. White Questions—Black Answers, a PhD thesis research project focusing on the inclusion of Indigenous students with disability in the Australian Higher Education Sector, demonstrates this premise. Founded on Indigenous Standpoint Theory, the methodology of this research foregrounds the central role of Indigenous people with lived experience of disability—in the study design, its implementation, and in the validation of the results. This paper shares the conceptual framework and relationship hierarchy for the research, ensuring that the authority of those with lived experience was maintained and central to all research activities. It showcases a way forward for other fields of co-designed research, delivering both academic rigour and leadership by those with lived experience.

Reconceptualizing Research to Practice: The Role of Self-Advocates in Disrupting How We Think About Implementing Research-Based Practices in Disability

Abstract Inclusive research advances the right of people with lived experience with intellectual and developmental disabilities to be involved in all phases of the research process. From an implementation science perspective, a critical component to inclusive research is addressing how research-based practices are adopted, implemented, and sustained in real-world contexts by real-world implementers—who in the context of this special issue are people with lived experience of disability. The purpose of this article is to advance inclusive approaches in the implementation of research-based practices in disability services and supports by highlighting strategies used by an innovative organization that supports self-advocates to implement research-based practices in disability supports and services.

‘Nothing About Us Without Us’: exploring benefits and challenges of peer support for people with disability in peer support organisations – protocol paper for a qualitative coproduction project

IntroductionOne in six people live with disability in Australia with higher levels of disability of people from diverse communities, such as those with culturally and linguistically diverse (CALD) backgrounds. In...

Dignity and the Importance of Acknowledgement of Personhood for People With Disability.

Exploring the intricate relationship between individual and collective experiences, this study explores dignity from the perspectives of people with disability. Using an extreme citizen science approach, we engaged people with disability as active partners in gathering data through qualitative surveys and focus groups. Framework Analysis was employed to ensure the validity of findings while privileging the voices of people with lived experience of disability. Dignity was contingent on the acknowledgement of personhood and the delivery of human rights. Our research identified five key aspects to maintain and protect dignity: (1) acknowledging personhood; (2) recognising people with disability as decision-makers of their lives; (3) realising the right to access information; (4) maintaining the right to privacy; and (5) eliminating or minimising barriers to accessibility and inclusion. Undignified experiences that resulted from a lack of acknowledgement negatively affected participants' wellbeing, and healthcare settings were identified as particularly challenging environments for dignity. These findings have significant implications for healthcare systems and services within an international and interdisciplinary context. They emphasise the need for adaptable, flexible services, co-designed with people with lived experience of disability. Addressing organisational constraints, resource limitations, and expectations is paramount to ensuring dignity is maintained through the acknowledgement of personhood and safeguarding of human rights.

Disability training for genetic counseling students: Theadvocates' perspective.

The genetics and disability communities have had a complicated relationship that is rooted in the history of the eugenics movement. Disability scholars claim that in order for healthcare professionals to provide optimal services to disabled patients, disability education must be implemented into healthcare training programs. No studies have explored the perspectives of disability advocates regarding the implementation and use of disability training in genetic counseling. This exploratory study recruited 13 advocates with lived experience of disability and genetic counseling exposure to participate in a semi-structured interview to share their recommendations for disability education opportunities in genetic counseling training programs and their perceived benefits of increased student exposure to disability. All advocates received genetic counseling themselves and four advocates reported working with genetic counselors in the advocacy setting. Advocates recounted their experiences working with genetic counselors, identifying qualities they deemed critical for effective counseling. All the advocates expressed interest in participating in experiential opportunities, with few concerns noted. The most frequently discussed recommendations for disability training included inviting advocates to speak in classrooms, and having students shadow disabled individuals. Advocates noted barriers to consider when implementing such educational opportunities, such as accessibility issues. Potential benefits of implementing disability education for students included providing students with a broader scope of knowledge and a deeper understanding of disability and resources available to the disability community. This novel study found that advocates are interested in participating in genetic counseling education, with recommendations on preferred experiential learning. By increasing a genetic counseling student's exposure to a disability, they may develop a comprehensive understanding of life with a disability, which may improve genetic counseling services to those with newly diagnosed disabilities.

Inclusive Augmented and Virtual Reality: A Research Agenda

Augmented and virtual reality experiences present significant barriers for disabled people, making it challenging to fully engage with immersive platforms. Whilst researchers have started to explore potential solutions addressing these accessibility issues, we currently lack a comprehensive understanding of research areas requiring further investigation to support the development of inclusive AR/VR systems. To address current gaps in knowledge, we led a series of multidisciplinary sandpits with relevant stakeholders (i.e., academic researchers, industry specialists, people with lived experience of disability, assistive technologists, and representatives from disability organisations, charities, and special needs educational institutions) to collaboratively explore research challenges, opportunities, and solutions. Based on insights shared by participants, we present a research agenda identifying key areas where further work is required in relation to specific forms of disability (i.e., across the spectrum of physical, visual, cognitive, and hearing impairments), including wider considerations associated with the development of more accessible immersive platforms.

‘Nothing for us without us’: Exclusion of students with disabilities in disability policy review at a South African institution of higher education

The prominent disability rights slogan ‘nothing for us without us’ which was adopted from the 16th-century Polish revolution ‘nihil de nobis, sine nobis’, means that persons with disabilities, should be involved in anything that concerns their welfare so that they speak for themselves as people with a lived experience of disabilities. This empirical paper explores the participation of students with disabilities in the review of an institutional disability policy in a single institution of higher education in South Africa. Qualitative data were collected through interviews with twelve students with disabilities and seven disability unit staff members. Informed by critical disability theory, the finding was that there was limited participation by students with disabilities in the formulation of institutional disability policy meant for their welfare. While contemporary scholarship on disability seeks to address the exclusion of historically disadvantaged social groups such as those with disabilities but without privileging the voice of those with a lived experience of disability in policy issues, the ‘nothing for us without us’ slogan will remain elusive, fragile and cliché merely chanted. The paper thus aims to contribute to the understanding that limited participation in policy formulation could negatively affect the learning of students with disabilities and consequently their timeous graduation. For genuine inclusion, all students, including those with disabilities will fully participate in higher learning.

A good life for people living with disability: the story from Far North Queensland

Purpose People with disability in regional, rural and remote Australia have poorer service access compared to people from metropolitan areas. There is urgent need for reform. This study’s aim was to explore the needs and aspirations of people with lived experience of disability in Far North Queensland (FNQ) to inform a new service framework. Materials and methods Twenty-five individuals with diverse experience of disability were engaged in semi-structured interviews. Participants were recruited from four sites that differed geographically, culturally, and socioeconomically. Using an inductive then deductive thematic approach to data analysis, statements of needs and aspirations were compiled and aligned with three pre-determined vision statements. Results Needs and aspirations aligned well with the vision statements which were to: feel “included, connected, safe and supported”; have “opportunities to choose one’s own life and follow one’s hopes and dreams”; and have “access to culturally safe services close to home.” To realise this vision in FNQ, support to navigate and coordinate services across sectors is essential. Conclusion People of FNQ of all abilities, need and aspire to experience “a good life” like their fellow Australians. Any new service model must focus on providing service navigation and co-ordination amid the complexities of service delivery in FNQ.

The NDIS at ten years: designing an equitable scheme for the next decade.

The NDIS at ten years: designing an equitable scheme for the next decade.

Unmet needs, limited access: A qualitative study of postpartum health care experiences of people with disabilities.

To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives. A qualitative study with semi-structured interviews. Between July 2019 and February 2020, in-person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth. Thematic analysis was used identify common themes. We identified three overall themes concerning participants' postpartum care experiences and the different types of formal services received in and out of hospital: (1) lack of adequate care, (2) lack of provider awareness of disability and disability accommodations, and (3) fear of judgement, discrimination, and intrusive surveillance. The identified themes were applicable across disability groups. However, most comments on disability accommodations came from participants with physical or sensory disabilities, while participants with intellectual/developmental disabilities most commonly reported concerns about lack of adequate care and fear of judgement, discrimination, and intrusive surveillance. Findings indicate that postpartum care often fails people with disabilities. This could contribute to negative health consequences for them and their newborns. Birthing people with disabilities need multidisciplinary, proactive, and strengths-based postpartum care to mitigate risk for health complications. Further, disability-related training and guidelines for health and social service providers is required. Consolidated criteria for reporting qualitative research (COREQ). Our research team included two peer researchers with physical disabilities who served as co-interviewers and participated in data analysis, contributing their lived experience of disability and interactions with the health care system. All stages of the study were also informed by feedback from the study's Advisory Committee, which comprised women with disabilities (many of whom are parents), disability organization staff, clinicians, and policy representatives.

The employment of people with lived experience of disability in Australian disability services

AbstractIn Australia there is a significant gap in employment rates between people with disability and those without. This is in the context of general gaps in the disability sector workforce, which has been the subject of recent policy concern. Our study critically investigates (a) data on the employment of people with disability in Australian disability services; (b) data on disability awareness training in disability services; (c) these results in the context of the National Disability Insurance Scheme (NDIS) National Workforce Plan: 2021–2025 and the NDIS workforce Capability Framework. We undertook a mixed methods study that brought together descriptive statistics from the National Disability Services Workforce Census data and qualitative content analysis of the NDIS National Workforce Plan and the NDIS workforce Capability Framework. We found that 50% of disability service organisations employ at least one person with disability in their organisations, with 20% employing less than three people with disability. Only 24% of organisations include a person with disability on their board, and 19% of organisations employ people with disability in management positions. Policy document analysis shows policies support key areas for increasing employment of people with disability and disability inclusion. Employment of people with disability at all levels of disability services remains poor in Australia. We argue that ‘soft’ approaches to addressing low employment levels need to be supplemented by harder approaches that take full advantage of the levers available to government through the operation of the NDIS.

Lived Experience Perspectives on Ableism Within and Beyond Music Therapists’ Professional Identities

Abstract The 10 authors contributing to this reflective essay are comprised of music therapy practitioners, academics, and students with lived experience of disability, neurodivergence, or/and chronic physical and mental health conditions. We will discuss the impact of ableism in our music therapy work, both for participants and for music therapists. Beyond outright discrimination of people with disability, ableism is typically linked to an agenda to normalize and cure. In contrast, music therapists working from a position of post-ableist music therapy seek to collaboratively provide conditions and musical experiences that are less disabling and restrictive through addressing barriers and facilitating connections. We will discuss how including post-ableist perspectives might also create safer spaces for music therapists with lived experience of disability, neurodivergence, and/or chronic physical and mental health conditions. In this critical commentary, we wish to move from a deficit understanding of therapists with lived experience that is often implicit in codes of ethics and standards of practice, to one that celebrates the richness and knowledge that our experience brings. To embed post-ableist perspectives into our profession at all levels, we will discuss the implications for student training and supervision when accessibility is centered in practicum and classroom learning activities. In conclusion, we aim to make apparent the fact that therapists can and do come in all forms and with all backgrounds and that recognizing health diversity in our profession benefits us all.