On 2 September 2020, AIDRAN President and La Trobe Law School Research Fellow, Dr Dina Afrianty, moderated the second webinar in the KSI4RDI (Knowledge Sector Initiative for Research, Development and Innovation) series on the GESI (Gender Equality and Social Inclusion) approach to disability research. Professor Karen Fisher from the Social Policy Research Centre at the University of New South Wales (Australia), and Mr Fajri Nursyamsi, SH., MH., a researcher at Pusat Studi Hukum dan Kebijakan Indonesia, PSHK (Centre for Indonesian Law and Policy Studies) were invited to present. The webinar was attended by almost 100 participants via Zoom and was livestreamed through The Conversation Indonesia’s YouTube channel where it attracted a further 160+ views. The recording can be accessed here. Indonesian sign language interpretation and closed captioning translation were provided to facilitate accessibility.
Professor Karen Fisher presented on disability inclusive research practices and discussed how practices have changed and developed through learning from people with lived experience. Professor Fisher first discussed how the 2006 United Nations Convention on the Rights of Persons with Disabilities (CRPD) has been influential in asserting people with disabilities, like all people, as citizens with critical rights. Part of these rights, Professor Fisher, highlighted, include being able to participate in, and be reflected in policies and laws.
Next, Professor Fisher explored the Social Policy Research Centre’s (SPRC) project with Spinal Cord Injuries Australia (SCIA), an organisation run by people with spinal cord injury for people with spinal cord injury. The project was designed to generate rigours evidence for policy change. To achieve this, researchers with spinal cord injuries were critical to both the SPRC and SCIA teams. Data was collected through roundtables, interviews and surveys. Roundtable discussions were also a key method of data analysis. Researchers and contributors with spinal cord injury launched the report in the Australian parliament. This gave the report’s findings credibility as it was presented by people with lived experience who had contributed at every stage of the project.
Professor Fisher concluded by reflecting on how inclusive research practices have changed at SPRC and the University of New South Wales over the last ten years. Critical changes include: collaborating with nongovernment organisation where people with disabilities hold positions of power; paying people with lived experience to be researchers and advisors; adopting a wider range of methods including engaging and fun activities; critically analysing the role of support people in research methods; and extending the use of easy read and video in methods and reports. Professor Fisher argued that, in order to change the system and remove barriers to equality, investment in inclusive research infrastructure is critical. Investing in relationships with disability-focused nongovernment organisations, investing in training pathways to education and research for people with disabilities, and employing people with lived experience within research and advisory positions will also help create change, Professor Fisher advised.
Researcher and advocate, Mr Fajri Nursyamsi, followed Professor Fisher’s presentation. Mr Nursyamsi began by discussing the urgency of evidence-based disability research and how this will lead to policy change. He first explored the paradigm shift that has occurred in Indonesia from a charity-based approach to disability to what is known as the ‘social model’ which sees social structures (like, for example, a built environment that is not accessible for all or discriminatory policies or laws) as creating barriers that ‘disable’ people. Unlike the charity-based approach, the social model does not seek to change individuals with disabilities but rather seeks to change ‘disabling’ structures, environments, practices, laws etc within society itself. The social model, Mr Nursyamsi argued, ensures that disability support is a budgeted priority rather than an afterthought. This approach facilitates equality as disability is addressed and attended to across different sectors and government agencies (education, transportation, disaster management etc).
Mr Nursyamsi then explained how, in relation to other Indonesian laws, which usually focus on one sector, the Disability Law is unique as it takes a multi-sector approach, covering 25 different sectors. In fact, Mr Nursyamsi advised that over 30 ministries/agencies and 9 private sector parties are identified as key stakeholders.
Mr Nursyamsi concluded by outlining the ways in which the social model can be incorporated within disability research. He argued that researchers and research projects should meaningfully engage with people with disabilities. People with disabilities should be involved in the decision making process and accommodating this should be budgeted and considered in the planning stage of the project. The government could provide financial incentives to support this, Mr Nursyamsi suggested. Ideally, he argued, people with disabilities should be the researchers themselves.
Following the presentations, those in attendance were invited to participate in a survey which directed the proceeding discussion. Approximately half of those in attendance advised that they had conducted Disability Studies research. Several guiding questions also assisted the discussion.
The discussion was highly productive and raised important issues concerning inclusion. One attendee discussed how gender and disability can intersect to cause women with disabilities to be further marginalised than their male counterparts and how both gender-based data on disability and gender-based funding could help mitigate this. The way in which disability intersects with class (especially in relation to rural and urban populations) was also discussed. Dr Afrianty and AIDRAN Indonesia Chair Mr Slamet Thohari contributed to the discussion on disability inclusion within the university sector. Mr Thohari shared how research he conducted with colleagues at the Disability Studies Centre, Brawijaya University led to meaningful inclusion at Istiklal Mosque in 2018 where wheelchair access and closed captioning were provided at Eid Adha. Overall, it was a rich discussion that tackled challenging yet critical questions.