In 2017, Annmaree and Moira were doing their PhD research. Julie was supervising Moira. Annmaree was researching hospital experiences of people with dual sensory impairment or deafblindness and Moira was examining experiences of older people with dual sensory impairment and their carers/families. We were at different universities. We hadn’t yet met but noticed that this subject area seemed to be lacking any sort of organised or even informal group of researchers in this area where we could share knowledge and experiences. It can be lonely doing a PhD, so forming networks with others in your subject area can not only be practical (such as sharing references, early findings, difficulties with methods) but also fun (such as cake and tea).
FIRST: A SPECIAL INTEREST GROUP
We formed the Dual Sensory Impairment Special Interest Group (Dual-SIG). At first it was just the three of us. Then we started inviting others to join us. And then we branched out to include international colleagues as well as local. We talked about current research, gaps in knowledge, services and resources in different locations. Meetings are held a few times a year, membership is free. The group includes people with DSI, researchers, professionals and practitioners who support people with DSI.
THEN AN AMBITIOUS PROJECT
Annmaree finished her PhD first and joined the University of Sydney where Moira worked and was close to finishing her own thesis. It was inevitable really. Both research projects had found a profound lack of awareness and support in Australia for people living with DSI and their carers/families and indeed the professionals and supports involved in their care. We wanted to translate the research into improvements in communication and care for this underserved group living with DSI. Julie was onboard and her long experience since her own work and PhD on people with DSI navigating a hostile world in 2006.
It was 2022 and we were talking about what is needed (funding), 2023 we secured two very small grants to lay the foundations for a bigger one. We are ambitious and have so many ideas and goals that we sometimes liken ourselves to an octopus where each arm is holding an important aim and these are all being juggled at the same time.