I was employed as a part time Research Assistant on the Safe and Enjoyable Mealtimes project as I had lived experience with cerebral palsy and swallowing difficulty.
It was important that lived experience is beginning to be recognised as a qualification in itself. More importantly, inclusive research, is upholding the principles of “nothing about us without us”.
Having lived experience, enabled me to contribute real life stories and anecdotes to the project. Many of these were included in the final training product. For example, “The Perils of the Mealtime Rush”. This added authenticity to the training. I also played a role in some of the videos.
In addition to drawing on my own lived experience, I also assisted with gathering resources for the project.
Given that the life of the project was during the Covid-19 pandemic, I was able to work from home and meet with my colleagues via video conferencing. This eliminated the usual logical challenges that are associated with attending a physical work place. Although, of course, I missed having face to face interaction with others involved in the project.
My involvement in the project greatly enhanced my own knowledge about swallowing difficulty. I found the segment on meal preparation particularly helpful. This will better equip me to instruct my own support workers on how to safely support me during mealtimes.
As part of the project I co- presented a workshop at the Speech Pathology Australia conference. Being a conference primarily attended by speech pathologists, it was unusual to have people with disability as presenters. Suddenly, the roles were reversed and people with disability were the experts! I felt that both my colleague, who also had a disability, and my contribution to the workshop was well received and we asked many questions by the attendees. I would like this to be a catalyst for change, not only for Speech Pathology Australia but for other professional bodies and conferences.
In conclusion, I would like the NDIS Quality and Safeguards Commission to make it a requirement for future grants for people with disability to be included in research teams. This not only enhances the quality and authenticity of the research, it also provides employment opportunities for people with disability.