Do the ends justify the means? Disability research in social isolation

Ann Marie Smith, a woman with cerebral palsy, died in hospital on April 6, 2020,from septic shock, multiple organ failure, severe ulcerated and infected tissue and malnourishment. Police stated the 54-year-old, unable to care for herself, had been living her days and sleeping at night in the same woven cane chair in a lounge room for over a year with extremely poor personal hygiene. That chair had also become her toilet, and there was no fridge in the house, and investigators were unable to locate any nutritional food in the house. (ABC News, May 15, 2020). This broadcast aired during school ‘pick-up’. I had collected my 15-year old son from his ‘isolation classroom’ in a mainstream school. Like the woman left to deteriorate in a chair, he has cerebral palsy, and together we listened to her story. We did not know Ann Marie Smith, but the drive home was an unforgettable fusion of grief, rage and fear. We struggled to come to grips with it.I had already prepared a very different article for publication, one celebrating the potential for inclusive research advanced by the burgeoning use of communication technologies in the defence against Covid19. It would highlight other benefits too. As noted by Cornwall (2020), the current pandemic offers an unexpected opportunity to study social and behavioural responses in ’real-time’. No university, for instance, would approve an experiment that involved firing one group of workers and seeing how they fare compared with their still-employed colleagues.(Cornwall, 2020). There seemed to be merit in a pandemic story pointing to opportunities for communication between researchers and people marginalised by research. Yet, in the sleepless hours after school pick-up that day, it became evident that a story exploring opportunities for future inclusion would come too soon. There were demons to be faced vividly exposed by the impact of Covid-19.