What’s different about how you will treat me and use my story?
We are looking for people whose voices haven’t been heard, not just people who are considered ‘leaders’.
We know that each person’s needs and experiences will be different from other people who might check the same boxes.
Our project is based on the slogan first made popular in South African disability rights activists, adopted by the Sex Workers’ Outreach Project (SWOP) in Australia, and recently adapted by social justice artist Ricardo Levins Morales to this:
Nothing about us without us is for us.
This means we understand that we need to listen to you talk about your own healthcare experiences in your own words in order to make a positive difference to the healthcare system.
We meet you where you are
In order to make our project as accessible as possible, we will do our best to meet your needs. We can come to you or offer you a private space to talk. We can talk to you in person, through text chat or email, by phone, or through video. We can talk with you and your support people or with just you alone. We can talk for as long or as little as you feel comfortable. We can help you to share your story in any medium you prefer, from video to audio recording to written text. You can tell us if we need translation or adaptive aids. No information we share outside of Health Consumers NSW will contain your full name or any details that could identify you without your written permission.
We are trauma aware
Our project is designed in a trauma-informed way. This means we understand that sharing negative health care experiences can often be distressing or trigger people’s unresolved trauma. For this reason, before you share your experiences, we will chat with you to make sure that participating in this project seems emotionally safe for you. We will also offer you referrals to support services. We care about ensuring this project is culturally and emotionally safe for people.
We say thank you
We also know that people in excluded and mistreated groups are often asked to give their time for free and what they give not acknowledged or valued. For this reason, we will show that we value you by acknowledging by name each person or organisation as contributors and give each person who is eligible to participate a $100 Coles voucher.
We want social change
This project is not ‘research’, it is community engagement for social change. We will do more with your story than just listen to you. We will use your wisdom and insights to guide other people seeking health care services on how to deal with negative experiences, to educate health providers and health system authorities about the current gaps and problems with healthcare in South Eastern Sydney, and to make changes to what actually happens in the healthcare system.