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Engaging with people with the lived experience of disability

28 May 2020 12:38 PM | Anonymous

Ko Aoraki te maunga

Ko Wataki te awa

Ko Kāi Tahu te iwi

Ko Hakiri Price tōku tipuna,

Ko Moeraki me Ngāi Tūāhuriri te hapu

Ko Cate Grace tōku ingoa.

Tēnā koutou, tēnā koutou, tēnā koutou katoa

Since I was young, my whānau on both sides has worked in our community to support others to find and share their own voice. It came as no surprise to my parents that in my teenage years I became interested about other viewpoints and making connections with diverse groups. My own journey with acquired disability in my 20’s broadened my world view even more and exploring unexpected pathways and new opportunities became my new normal.

So, six months ago when I sat down over tea with Dr Jo Nunnerley and discussed an opportunity to continue Dr Johnny Bourke’s vision at Burwood Academy of Independent Living (BAIL), it was an easy decision!

Dr Bourke established a person with lived experience (PLEx) group around New Zealand and Australia. The group known as the Burwood Academy Consultation (BAC) Network, was set up to review research projects, particularly around disability and all that world encompasses.

My role as BAIL’s PLEx Engagement Lead has a focus on creating meaningful connections and ensuring those who have a disability or lived experience contribute and participate at all phases of research. This is a fabulous diverse and active group. My role is to facilitate and match the group to the various work we are asked to take part in. Over the six months since I began, the group has been involved with co-designing research proposals, evaluating scoping documents, being research participants, matching advisors to research projects, co-designing and delivery of education course material and creating pathways for students to undertake further study at a Masters and PhD level.

The lens of disability has changed dramatically over the last decade. I am proud to work for such a forward thinking organisation that works to ensure that not only does research reflect societal changes, but that those with lived experience have a voice and acknowledged contribution. It is exciting to be involved in societal and social change as BAIL collectively introduces new ways of thinking across not only the disability sector but also the wider wellbeing and health sectors. My role allows diverse groups to contribute to the conversations that BAIL are already having in the research and health sectors.

Recently I was appointed to act as an Advisory Committee Chair with the PEC - PLEx Engagement Committee. The committee meets regularly to give advice and support, and direction to other organisations. As a facilitator, this group is an important part of re-framing disability, as it ensures there is a collective and diverse voice representing those with lived experience. Our voice can contribute to the strategy of organisations who are forward thinking about connecting research that is produced within the sector.

Taking on this role at BAIL, and all it includes, means I can combine many of my passions with a team and with different organisation’s who share similar values, experiences and goals. I believe it is important to remember that this research comes from a person and their everyday life; sometimes their story needs to be told outside of percentages and figures. We produce research that matters, and we do it because we care.

Where to from here? I look forward to building our BAC Network and PEC and continuing to support BAIL to have a positive impact to those with lived experience of disability. So, if you have lived experience of disability or know someone who does and is interested in contributing to meaningful research please drop me a line cate.grace@burwood.org.nz. I would love to connect with you!

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