We talk a lot about the importance of shared lived experience. But why is this so important?
If we want to partner with individuals to support them in their vision for a good life, we need to know what they want and need. The shared lived experience of disability can help us understand. It can help us learn what we need to work on together. It shows respect for a person as an authority on what they experience in daily life, and what others can do from that perspective. Nobody wants to be told what they need by somebody else, instead of being asked.
If you think about it, we know our stories. We know what we have been through. Our experiences provide meaningful information about us. Even though we know this, we need reminders. Sometimes we need to be better at practicing what we say about listening and learning. We have to remember that people are the experts of their experiences. We have to ask questions and listen, instead of telling.
What do we need to ask? We could ask people to describe what a situation was like and what happened. We could talk through ideas that might be helpful for next time. We could plan for things that might be needed to make situations easier. We could find opportunities to share those stories with other people so they can think about these questions, too.
When people share their experiences, it helps others understand each other. This is important for relationships and support and connection. It helps build community and helps us understand what people need when they tell us in their own words.
Some of the individuals and families that we support have been willing to share their stories. They have joined our webinars and virtual partnership activities to talk about their experiences and it is important to provide these platforms for people to be heard. This helps listeners get past what they think they know or have assumed about the experience of disability. It also reduces stigma and encourages acceptance.
Shared lived experience connects to person-centered planning and thinking about our approaches for support. What people want and need are unique for each person. We need to know what people care the most about if we are going to support that vision for what a good life can look like. We need to know what changes could be made that might be helpful. We can’t decide that for other people. We have to give opportunities for people to share that.
It is also important to think about feedback and shared experiences from people we support on what is useful. As providers of services, we need to hear what works and what doesn’t work and be accountable. When we were planning for our virtual partnership, we knew that we had ideas to share about resources and tools. We heard about how these tools have been helpful and we wanted to ask people to talk about their experiences and answer questions from their perspective. This helped us learn more about what is valuable and what we can do to be better partners in support.
The goal to include shared lived experience is important to us at Values into Action and we hope to continue to create spaces for people to tell their own stories. Please look for more blog posts and reach out to us if you want to share with the community.