Share Your Story With The Disability Royal Commission!

We are preparing a submission for the Royal Commission and would like to hear about your experiences of neglect or abuse.

While the Disability Royal Commission has been running for almost three years, the experiences of people with ME/CFS are still not very familiar to the Commission. Your story is valuable to help educate the Commission on the difficulties faced by people living with ME/CFS.

We have set up a survey to collect experiences on the topics below (it is not necessary to respond to every topic). Try to limit the response to each topic (250–300 words) to make it easier for our volunteers to read and collate each response. If you have had multiple experiences related to each topic, you could choose one to describe in more detail and/or describe how the repeated pattern of experiences have impacted you.

Your responses don’t have to be long. Even a few sentences describing your experience will be valuable. All stories shared with us will be included in our submission to the Royal Commission.

We will be collecting stories via our survey until Monday November 21.

Topics

1 Despite ME/CFS being highly disabling, many ME/CFS patients have NDIS and/or DSP applications rejected. Tell us about your experience applying for these programs.

2 Tell us about your experience being forced or coerced into undergoing treatment for your ME/CFS which you didn’t want.

3 Tell us about your experience of medical neglect through lack of timely diagnosis and medical professionals discounting your lived experience of ME/CFS (for example: ignoring, dismissing, ridiculing, or disrespecting you).

4 ME/CFS is an Energy Limiting Chronic Illness that has not been recognised sufficiently as a disability. Tell us about the impact of the lack of recognition of ME/CFS as a disability on you and your life.

5 People with ME/CFS often don’t identify as disabled. If you don’t identify as disabled, can you tell us why?

6 Tell us about your experience of your condition being dismissed or not acknowledged when trying to access services.

7 Tell us about your experience of any other impacts of neglect, such as:

• Lack of appropriate housing and care (including ending up in aged care)

• Family or intimate partner violence

• Feeling excluded from processes like the Royal Commission because of lack of energy to testify or prepare a submission

• Institutional abuse

• Passive abuse

• Any other experience of abuse or neglect you would like to share with the Royal Commission

We will also be including issues facing carers in our submission, and these will be collated separately.

If you have had an experience not covered by these questions, or that you would like to share with the Disability Royal Commission directly yourself, you can prepare your own submission to the Royal Commission. Written submissions close 31 December 2022.

Writing about these sorts of experiences can be difficult and trigger uncomfortable emotions. The Disability Royal Commission has support services available for anyone who experiences distress as a result of sharing their experience with the Royal Commission. If you find completing this survey difficult, you can access free support through Lifeline Australia or the Blue Knot Foundation.