Lived Experience Of Disability Research Articles

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. Implications for Rehabilitation The perspective of people with lived experience of disability needs to be heard and respected when designing services to support them. Service navigation and co-ordination are required to manage the complexity of service delivery for people living in regional, rural and remote Australia. Engaging with the whole the community is prudent when designing community disability, rehabilitation, and lifestyle services in regional, rural, and remote Australia.

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

As the NDIS turns ten, we must make changes to improve scheme equity The National Disability Insurance Scheme (NDIS) was created to provide reasonable and necessary supports for people with disability under the age of 65 years to live an included and meaningful life on an equal basis with other Australians. The mechanism for this is individualised support plans underpinned by personal budgets that are spent on services purchased from a social care market. Former Prime Minister Julia Gillard announced the scheme in 2012 and the national roll-out, which began in 2013, was achieved in July 2020.1 The NDIS is a very significant social policy innovation and its importance for people with disability in Australia cannot be underestimated. For many people with disability, the supports provided through the NDIS have been essential to living an included life. The scheme was funded in part by an increase in the Medicare Levy, against which there was little initial protest.2 However, providing these essential supports has been more costly than originally anticipated by the Productivity Commission.3 The NDIS is expected to cost $50 billion annually by 2024–2025,4 which is higher than the annual budget for either Medicare or defence. Attention to the scheme costs has been mounting, along with attendant fears about cost-cutting to plans.5 This has caused mistrust, with fear over cost-cutting to and by the NDIS a factor in community rejection of the now cancelled “independent assessments”.6 Even with expanding costs there remains significant concerns about equity within the scheme, with some groups still failing to receive the services that they need in comparison with others. To address these and other concerns, such as access, market and workforce, the federal government has initiated an independent review into the NDIS. There are over 535 000 NDIS participants compared with almost 4.4 million people with disability in Australia, including 2.4 million aged under 65 years,7 which means the NDIS can only ever be part of the national disability support landscape. Yet in the early days of its implementation, it became the default disability system as other existing disability supports and approaches were defunded or removed. These supports included successful programs such as Partners in Recovery, which was defunded when most existing participants were not eligible for the NDIS.8, 9 This has led to a situation where the NDIS is, as Bruce Bonyhady, the original Chair of the National Disability Insurance Agency, calls it, an “oasis in the desert”,10 with scheme participants receiving support to a much higher level than non-participants. This situation makes people currently eligible desperate to retain NDIS supports and others desperate to become eligible.11 A Tier 2 scheme was originally envisioned to provide referrals and community assistance so that people not eligible for individual NDIS plans could receive support. However, the Tier 2 scheme has not been effective in delivering this.10 Current NDIS participants are overwhelmingly young (under 18 years) and male, which is driven by the large number of participants with autism and developmental delay.12, 13 Participants with a primary autism diagnosis comprise 30.9% of scheme participants, followed by intellectual disability (20.2%) and psychosocial disability (9.1%). Eighty-nine per cent of men aged over 18 years have applications for access approved compared with 80% of women.13 Just 37% of NDIS participants are women — substantially lower than the 49% of people with disability aged under 65 years who are women.14, 13 This raises concerns that the intersectional influence of gender might drive disparities in access.15 Concerns have been raised about scheme access and utilisation of approved plans (ie, percentage of budgeted supports used), which are lower in some participant groups compared with others, resulting in inequity of access to necessary supports.16 Although utilisation is not a perfect measure because it relies on planning processes that may in themselves be inequitable, it is clear that utilisation differs by disability type; for example, people with psychosocial disability have an average plan utilisation of 53% compared with 70% for those with autism.17 A major factor in the disparity in plan utilisation is due to the failure of markets to function where participant needs necessitate more specialised supports, which come at higher costs to providers, and in areas where there are poor economies of scale.18, 19 Plan utilisation is higher for people in metropolitan than regional and remote areas (eg, only 11% plan utilisation for people with psychosocial disability in the Far West region of New South Wales).20 Interestingly, some populations that are traditionally underserved in health and social care receive good access to the NDIS, with culturally and linguistically diverse people with disability having higher than average plan spending and utilisation.17 This may be a function of rurality, with most of this population resident in metropolitan areas.17 Differences in use of plans, for some groups of people with disability compared with others, underline the fact that the scheme functions better for people with support needs that are relatively straightforward and can receive support from less specialised, more generic services and support workers. In an exploration of plan utilisation by people with psychosocial disability, a 2022 study found that utilisation of plans is affected by both individual and broader systemic conditions, including available workforce.21 Workforce planning to ensure more equitable access for people with more complex needs is therefore one part of the strategy for addressing this deficit.22 Much of the NDIS workforce do not have specialised qualifications in disability, which makes them an easier workforce to come by and a workforce that is therefore cheaper for services to employ compared with experienced or qualified workers (and with wage costs reduced, enables easier profits). This can mean that the quality of support is lower even for those with lower support needs because the workforce may have limited knowledge of disability and have low expectations of what people with disability want and need to do, for example, beyond assisted showers, walks around the neighbourhood, and some social conversation. Participants prefer experience specific to their needs.23 Relevant experience does not necessarily come from training but may come from lived experience of disability and disability support, with many people prioritising interpersonal skills over qualifications in disability.24 Without an experienced workforce, people with complex language and communication disability (including one of the authors of this article with deaf-blindness), for instance, will not have their needs understood and so remain marginalised. There is a fear that ill-informed service providers sometimes act as gatekeepers denying supports that people with disability, the true experts, know they need: “They need to be able to have walked in our shoes”.25 These workforce deficiencies are structural problems enabled by deficiencies in the market structure that accompanies the NDIS and must be addressed to provide equity for people with disability.26 There are also cultural barriers to equity in the operation of the NDIS, with lower levels of plan utilisation in Indigenous people with disability.17 There are a number or reasons for this, including the number of Indigenous people living outside of major cities (56.8% v 31.6% non-Indigenous) and in remote areas (9.8% v 0.8%).17 NDIS planning processes are fraught with challenges for Indigenous people living in regional and remote areas. The process of providing evidence of disability often causes significant stress and trauma.27, 28 The principle and process of providing evidence is situated in a deficit model, requiring people to prove the experience of disability as a burden. This model of disability is the antithesis of Indigenous cultural ways of experiencing disability where disability is interpreted as part of the diverse human experience as opposed to a limitation or impediment.27, 28 The NDIS is also designed on Western-centric assumptions that all people with disability exist at the same starting line: house, shelter, food, family support. Many Indigenous people with disability are homeless, living in poverty or in overcrowded houses.29-31 To address equity for this group there needs to be Indigenous-controlled service providers who generate whole-of-life case management to help Indigenous people with disability who are living in disadvantage understand and access the scheme.32 Inherent in these tensions is a concern that a scheme that should be agnostic to diagnosis and provide support based on individual needs does not work well for those with more complex needs or whose experiences do not fit mainstream ways of understanding or experiencing disability. The NDIS is one mechanism through which Australia fulfils its obligations under the United Nations Convention on the Rights of Persons with Disabilities.33 Under the UN Convention, rights should be equitable, so should not be better enjoyed by people with some types of disability or needs over others. Equity decisions should not be outsourced to a market where decisions of profit compete with decisions about equitable service access. In order to ensure equitable disability support, we need to consciously build a disability support system (including the NDIS) that i) ensures that decisions with equity consequences do not rely on the goodwill of service providers but are a product of market design, and ii) that provides a cohesive system structure that enables access to necessary services for people with disability sitting outside the NDIS (including people aged over 65 years). The National Disability Insurance Agency has significant existing powers to make decisions affecting scheme equity through scheme redesign to address underutilisation and, at a micro-level, through decisions relating to individual participants. Key to realising equity is an adaptive approach to the design of social care markets where all parts of the market are not treated in the same way.26 This approach means that the areas of disability support that work best within a traditional market environment may continue to function in that way but with government directing markets in a proactive way to provide supports for people with complex or unique needs. This could include increased pricing for services for particular groups or locations or appointing providers to deliver services where markets do not emerge to provide services. We urgently need evidence for how this can be done successfully.34 It is critical that issues of equity for people with disability, both within and outside the NDIS, are brought to the fore in the current NDIS review. A failure to address inequity within the operation and design of disability support means that the NDIS will continue to perpetuate the disabling and ableist structures that marginalise people with disability in the Australian society. Open access publishing facilitated by The University of Sydney, as part of the Wiley - The University of Sydney agreement via the Council of Australian University Librarians. Jennifer Smith-Merry received research grants in the past 36 months from the following non-government entities: National Disability Services, Independent Community Living Australia, and Community Options Australia. Commissioned; externally peer reviewed.

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.

The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research.

Engaging citizens and patients as research partners is receiving increasing emphasis across disciplines, because citizens are untapped resources for solving complex problems. Occupational therapists are engaging in inclusive research, but not always in equitable partnership. Moving beyond inclusive research to a dignified framework for research prioritises lived experience and human rights in health research. Using nominal group technique over a series of three working group meetings, eight experts, including three with lived experience of disability and research, prioritised principles and steps for conducting dignified rehabilitation research in partnership with citizens with disability. Embedding transparency, accessibility and inclusion, dignified language, and authenticity throughout research were integral to maintaining dignity and safety for citizens with disability engaged in research. The Dignity Project Framework encompasses five phases, namely, (1) vision, (2) uncover, (3) discuss, (4) critical reflection, and (5) change, which address the prominent criticisms of the disability community about research and embed the principles of importance into research practice. The framework builds on inclusive research frameworks to a human rights-based, dignified framework for extreme citizen science. Grounding disability in contemporary conceptualisations and providing a method for democratising knowledge production provide occupational therapists with a method for dignified partnership with citizens with disability.

The Multidimensional Impacts of Inequities for Tāngata Whaikaha Māori (Indigenous Māori with Lived Experience of Disability) in Aotearoa, New Zealand.

People with lived experience of disability have poorer health and socioeconomic outcomes than people without it. However, within this population, certain social groups are more likely to experience poorer outcomes due to the impacts of multiple intersecting forms of oppression including colonisation, coloniality and racism. This paper describes the multidimensional impacts of inequities for Indigenous tāngata whaikaha Māori (Māori with lived experience of disability). Semi-structured in-depth interviews were conducted with 28 tāngata whaikaha Māori and their whānau (extended family) using a kaupapa Māori Research methodology. An equity framework was used to analyse the data. The results describe: (1) inequitable access to the determinants of health and well-being; (2) inequitable access to and through health and disability care; (3) differential quality of health and disability care received; and (4) Indigenous Māori-driven solutions. These data confirm that tāngata whaikaha Māori in the nation-state known as New Zealand experience racism, ableism and disablism, compounded by the intersection between these types of discrimination. Recommendations from the data support the inclusion of tāngata whaikaha Māori in decision-making structures, including all policies and practices, along with equal partnership rights when it comes to designing health and disability systems and services.

Overcoming obstacles to accessibility and inclusivity in an Australian regional city: A transdisciplinary research approach

ABSTRACT This paper describes research asking what is required to overcome entrenched obstacles to accessibility and inclusivity in an Australia regional city, in particular for those living with disability. A transdisciplinary, systems thinking approach allowed a range of stakeholders, including many with lived experiences of disability, to create a collective plan of action. This plan included interdependent interventions, independent and ahead of national governance, connecting urban planning policy to education, public transport, housing provision, co-design of public buildings, community infrastructure and inclusive employment practices. Interdisciplinarity and transdisciplinarity within regional planning research was seen as impacting the process and outcomes.

Developmentally, Cognitively, and Intellectually Disabled People Are Artists, Not Pet Projects

In this autoethnographic piece, Riki Entz writes from their lived experience of Disability in the Canadian theatre industry and clearly outlines the ableism they have experienced as a multiply Disabled person. By providing honest examples of ableism, while also searching for ways that they can fit into this industry, Entz offers grounds for reflecting on ableism and the arts while remaining hopeful for the future.

The complexities of substance use disorder and people with disabilities: Current perspectives

This Supplement of the Disability and Health Journal presents research at the intersection of disability and substance use disorders (SUD). A better understanding of their complex relationship is needed to (1) inform the development of culturally relevant, accessible, and inclusive prevention and intervention efforts aimed at eliminating disparities in SUD prevalence among people with disabilities; and (2) improve access, quality and outcomes of SUD treatment and other recovery support services for people with disabilities. These eleven articles include themes around prevalence and identification of disability-related disparities, perspectives of people with lived experience of disability, and adaptations to substance use measures and interventions. They highlight the importance of a public health focus on the unique needs of people with disabilities and development of accessible and person-centered interventions. Integrative and holistic SUD prevention and treatment efforts, including pain management, are essential to address the complex needs of people with both disability and SUD.

Making Qualitative Research Inclusive: Methodological Insights in Disability Research

Qualitative research necessitates the representation of, and engagement with, people who the research is designed to assist. Disability research not only seeks to explore populations where lived experience of disability is distinct, it is also a field where researchers themselves have lived experience. This paper reflects on the methodological innovations between the researcher, their supervisory team and the co-created opportunities to collect qualitative experiences from participants with disabilities, acknowledging the researcher’s own disability. The purpose of the paper was to provide scope to explore the multiple provisions required to be inclusive of accessibility needs as a way to bring unique consumer perspectives to the research table. The paper demonstrates, through a narrative lens, how the research space is altered for people and researchers when disability is present; requiring ways to ensure inclusive research practices are responded to. Recommendations for future co-creation of research with disability are identified.