By Annmaree Watharow and Skye Wallace
We have travelled to Perth to do a number of multi-purpose activities:
- Interviews with some consumer advisors to the Dual Sensory Impairment and Partnership Projects
- Meet with colleagues working in deafblind-dual sensory impairment research and services in Western Australia
- Attend the Annual General Meeting of Deafblind Australia
- We are also presenting research right now in Australia on combined hearing and vision loss as well as participating in a panel on systemic advocacy
Interviews
Skye and I spent time with amazing consumers to get their insights on what deafblind or dual sensory impaired people and their families need and want. This information is then used to inform our partnerships, research programs and awareness raising and advocacy activities. We can’t and won’t do anything without your expert-knowledge.
Surveys
The DSI project is currently gathering information to support the development of a consumer and carer handbook. There is a survey that is currently live until the end of November, and we are very lucky that Hannah and Erika from DBWA engaged with the members attending the Hub to participate in a group response to the survey. So much lived experience and so many brilliant ideas and suggestions. Thank you everyone. We will be putting results on the website early 2025.
Deafblind Australia (DBA) AGM
Tech fluff ups: Haben Girma advises that patience is always needed in matters of accessibility and this proves very true in Perth today as patience is needed to sort out the live transcription so that everyone with their diverse accessibility needs and sensory losses can participate and contribute.
We hear about the history of Deafblind Western Australia, which is fascinating, and hear a wonderful presentation by Wilma Brass in which she used the periodic table to illustrate the history of DBWA through the ‘elements’ of the various people who have belonged, advocated and supported the deafblind in WA.
Meredith Prain spoke about international research projects: one is the Global Definition Project which is tackling that very vexing issue of what to call the condition of combined hearing and vision loss since the term deafblind is an identity adopted by the minority of the people who live with it. Annmaree has long held that this reflects a power imbalance when researchers and rehabilitation specialists for example impose a label for which the majority of the job don’t or won’t use. One of the key issues for older people with sensory loss/es is that an identity of sensory loss/es may not happen. And without this identity, it is very difficult to have a group power to force social change to improve and support quality of life.
The second international project is the International Classification of Function, Disability and Health (ICF for short) core set for deafblindness of which we have written earlier. This is an important step forward to give greater awareness in health and social care, in policy and practices around combined sensory loss.
I spoke briefly on the topic of research in Australia. Ten years ago, I read several researchers who said deafblind studies are in their infancy. With projects in most states, and diverse subjects and increasing inclusion of lived experience and co-design, most research is community based, aiming to benefit the community. There are still gaps in knowledge, policies, services and support for older people with combined hearing and vision loss.
