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Why the disability community can wake up in 2021 more optimistic that research and policy will serve them better.
It’s December, the time when people write their end of year reviews and start imagining their new year’s resolutions. With the advent of COVID and all of its force, 2019 seems a lifetime ago. Add the relentless unfolding of testimonies of violence, abuse, neglect and exploitation emerging from the Disability Royal Commission, seeing the year out has become the survival goal for many in our community.
People with disability have worn a lifetime of scars caused by neglect of service systems, and the COVID pandemic and response has exposed the structural deficiencies of these systems in their extreme. People with disability were (again) left out of the public health planning for the COVID response. This continued a pattern of avoidance to the health and wellbeing of people with disability that was brought to light in February by two full continuous weeks of evidence on the health of people with intellectual disability at the Disability Royal Commission that subsequently went unnoticed.
Whilst the crisis response to COVID and its impact is unquestionably the story of the year, there have been more subtle shifts that have taken place over the year which may be more seismic for the disability community in the long run. The pandemic has triggered a realisation of what social isolation can look and feel like and has asked what we as a society can do to combat it. This is a deeper conversation than figuring out how to log in to Zoom, and considers the physical and emotional effects of being lonely and disconnected. Accustomed to their own social isolation long before COVID arrived, the disability community, in their roles as natural problem solvers in navigating adversity, are suddenly been elevated as experts in inclusion.
Beyond dealing with the immediate crisis, there are also signs that there is an increasing preparedness to make long term investment in research and decision-making infrastructure that will serve the long terms interests of people with disability. These investments are occurring right along the pipeline; from improved access to data which supports research, more inclusive research which drives policy; and targeted policy and programs which direct front-line service delivery that is more attuned to the lives of people with disability. One such investment is the National Disability Research Partnership, and another is a National Disability Data Asset. Most significantly, people with disability are being increasingly seen in positions when they can influence the development of these initiatives. Their experiential knowledge is proving vital, as when it comes to identifying non-inclusive structural deficiencies, people with disability will intuitively know where to look.
What we are seeing in these initiatives are the early signs of the disability and research communities coming closer together to first to ask the big questions on what social inclusion looks like in all of its presentations. These communities then need to ask how we can collectively cultivate a society that creates a greater sense of belonging and inclusion for people with disability. There is progress because the wisdom and expertise of the disability community is valued in its own right. These current gains in respecting the influence of the disability community cannot be allowed to become fleeting. This will require a discipline to see beyond the immediate needs of an improved system response to COVID and move to embed the influence of people with disability in the institutions and structures of decision-making.
“One must face chaos to give birth to a star", Nietzsche once wrote. Out of this current chaos, there is a pathway forming where the role and contributions of people with disability are visible in a newly defined way. What were once stars forming behind the light are now being seen with the naked eye. When the dark clouds dissipate, we will have cause for greater optimism.
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