Working together with people with lived experience

By Emma Gee

Working together, collaboration, teamwork and co-design – all buzz words around how outcomes can be improved when there is a team approach. At the Summer Foundation, people with lived experience of disability inform our work through sharing their experience and providing their insights. We work with people with a range of experiences who enrich projects’ outcomes and ensure our work is relevant and informed.

As a person living with disability, I feel sharing your experience can lead to feelings of empowerment and inclusion. I have spoken with 3 of our supporters about what impact sharing their story has had on them…

James Nutt, a keen advocate and sports lover, has shared his experience of acquiring his brain injury, being forced to live in a nursing home and going on his journey to find suitable housing. A highlight of his contributions was speaking at a hearing of the Royal Commission into Aged Care.

This feeling of empowerment is also noted by another contributor to the work of the Summer Foundation, Helen Burt. Helen is a passionate advocate with Multiple Sclerosis who now lives independently in an SDA apartment. Among other opportunities, Helen spoke about her experience at the Summer Foundation Annual Public Forum. She says:

Similarly, after years of feeling ignored when advocating fiercely for her son Trevor, who has cerebral palsy and now lives independently in SDA, Linda created a series of digital clips to inform other people going through a similar journey to find housing: “It’s a relief to be heard, listened to, valued ..”.

When people share their lived experience, they can inform and help others going through a similar journey. Linda explains that it is: “…liberating for me to go through something I never thought would happen in my lifetime and then to be able to help others along this journey – give them hope that it is possible.”

James also speaks about the domino-effect sharing his story has on others. He says that by sharing his experience about moving into his own place others “…have an understanding of how it feels, maybe if they read about my experience, they might decide that they can do it too.”

Helen says how “satisfying” it is working together within a team, knowing that she “can contribute in a positive way to help others with disability and make the voice of, particularly those younger people in aged care, heard”. 

I feel working with others and sharing my own lived experience enables me to meaningfully contribute to empower and enrich mine and others’ lives. For me, creativity is sparked, problems seem to be better understood and addressed. What’s more, new opportunities to contribute and create positive change are generated. Similarly, by working with others in a collaborative manner, Helen, Linda and James also appear to reap so many benefits.