Shifting power to people with disability in co-designed research

This paper explores tensions navigated by researchers and project leaders when involving people with disability as experts in co-design and in the core team. Part of an evaluation aiming to improve paid employment of people with intellectual disability is used to consider this work. Assemblage analysis of the data assisted in identifying a range of material and social conditions, flows, and factors that de- and re-territorialise power in the co-design process. The expertise of people with disability informed research design. Structural conditions of funding and institutional support were foundational to the co-design. These included accessible practices, core roles for people with disability and resolving ableist conditions. Power shifts were easily undermined by institutionalised norms that disrespected the co-design contributions. When people in decision-making positions and allies recognised the value of codesigning research, it was key to centring valuable knowledge in articulating key issues, methodology, and analysis. Points of interest It is increasingly expected that people with disability will be involved as researchers and decision-makers in projects. This kind of co-design in research is very popular. When governments or organisations ask researchers to complete research quickly, people with disability are less likely to be involved in designing the research from the start. This reduces how much power they have as members of the research team. Our research found that people with and without disability needed to work together to resist when co-design work was not treated with respect by people or systems. Allies need to work to make co-design positions more secure. For example, people with disability need to be in decision-making positions before research proposals are developed

‘Affording’ new approaches to couples who inject drugs: A novel fitpack design for hepatitis C prevention

© 2017 Background In the West, hepatitis C is predominantly transmitted via the sharing of contaminated drug-injecting equipment. Although the majority of this sharing occurs between sexual partners, the responsibility for avoiding transmission has long been conceived as an individual responsibility, with prevention measures such as the distribution of sterile injecting equipment such as injecting packs (‘fitpacks’) aimed at individuals without regard for the social contexts of injecting. In this article we draw on the work of Bruno Latour to reconceptualise the fitpack. We argue that the fitpack is not inert or neutral in its meaning or effects, that instead it ‘affords’ particular meanings and actions, for example, that injecting is an individual practice and safety an individual responsibility. Method To challenge these affordances, we developed a new fitpack prototype aimed at couples, along with related health promotion messages. We asked 13 couples who inject drugs to examine and reflect on these new objects and messages. Results Overall, we found a high level of support for the broad idea of couples-oriented materials, as well as for our prototype and associated materials. Participants identified opportunities for improving the materials and commented on implications of the symbols and language used. Together the interviews demonstrated ways in which the new fitpacks and messages could afford couples-oriented safe injecting, and better recognition of relationships that are often dismissed by researchers and health care providers as insincere. Conclusions These findings demonstrate that first, there is a need and desire for a greater range in harm reduction resources. Second, it is essential to find ways of better acknowledging the validity and value of relationships between people who inject. Third, and more broadly, recognition must be given to the role of technological objects in materialising meanings and, as Latour might put it, ‘moralities’, and in turn to interrogating these meanings and moralities

Human Rights protection frameworks for people being treated involuntarily for a mental illness: Literature review

This project examined the oversight mechanisms to protect the human rights of people with a mental illness who receive involuntary treatment in hospital and in the community in Queensland, under the new Queensland Mental Health Act (MH Act).The study consisted of a literature and policy review and interviews with mental health consumers, family members, carers, and stakeholders. The Queensland Mental Health Act 2016 commenced in March 2017. The new MH Act seeks to strengthen human rights protections, however, there is a need to ensure these rights are made a reality and are practically enforceable. The research findings from this research project will inform the Queensland Mental Health Commission’s input into the review of the new MH Act in 2019