QAI's Ethical Use of Personal Stories Policy
QAI values the contribution of People with Disability to our systems advocacy efforts.
QAI recognises people with disability are often consulted about their experience. This may often cause stress to a person. Therefore QAI will only seek stories of lived experience when it is fundamental to the outcome of a project, and has benefit to the individual and systemic benefits to all people with disability. All contact with contributors are undertaken with a strict code of conduct and ethics, and at times information may be de-identified to protect the person and or their families.
In accord with QAI recognition of and response to vulnerability QAI will only seek consent to use the experience of vulnerable people with disability in systemic advocacy activities where the person will not be exposed to heightened risk or vulnerability and where the use of such experience provides valid evidence to support the advocacy effort.
Where an individual story or experience of a person or people with disability is used as a case study contribution for systemic advocacy, QAI will respect the dignity and privacy of the person or persons who make this contribution. All staff will adhere to the six principles of ethical treatment of story-telling in advocacy:
- Consent must be informed, freely given and where QAI de-identifies case studies, some effort will be made to obtain consent for documented systemic actions.
- Vulnerable people may require additional support and time to determine their consent and QAI adheres to the principles of advocacy in relation to conflict of interest, sincerely perceived interests of the person, paying keen attention to the potential costs to the person by the advocacy action and being mindful of the potential harm to other more vulnerable people.
- Participation by the person themselves will lend more authenticity to the story, but at all times their personal dignity and reputation should be promoted and protected. Participation can be in many forms including video, works of art, photos or other images.
- Collaboration with other groups of people who may be affected by the systemic action involving a personal story can ensure that there is shared ownership and lend support and strength to the individual. Cooperation and collaboration with other allies in the community will begin a process of change.
- Campaign context is crucial to ensuring the audience becomes part of the change process. It is essential that the uses of personal stories are relevant to the issues at hand.
- Construction of the story must be engaging and capture the attention of the audience. Advocacy and the use of personal experiences are more effective when it is factual, sets the scene, contains quotes, observations or anecdotes are more important than chronology. Stories that reflect this will offer indisputable evidence to the advocacy goal.
The collecting of information is done in a supportive manner which upholds the Guiding Principles of the organisation.
QAI will proactively seek informed consent from people with disability who are engaged or supported by QAI individual advocacy services or allies.
The interests and wellbeing of the person and other more vulnerable people will be maintained, promoted and protected by QAI and staff members.
The collection of information relating to the unmet needs, circumstances, issues pertaining to the person or persons will be recorded as evidence of breaches of human rights, legislation, policies and practices to advance systemic change.
QAI will develop processes and resources that respond to the needs of people with disability from Non English speaking background (NESB), culturally and Linguistically diverse background (CALD) otherwise declared diverse backgrounds in order to support them to tell their story by:-
- accessing professional interpreters when required.
- providing information in different languages when required.
- providing information and materials in alternative formats as required
- providing accessible and safe meeting spaces when working with people with disability.
- supporting staff in accessing information, networking and training necessary to ensure that the 5 Principles outlined in this policy are implemented when using personal stories as case studies.
- QAI will support staff to engage with allied advocacy organisations and specialist services in order to support the individual in telling their story and safeguarding them from increased risk or ill treatment.
Personal stories can be recorded in a range of media including images, audio files, video, artwork, poetry, or by verbal presentations accompanied by any or all of the above in meetings and at events such as forums or with media. All measures shall be made to ensure that informed consent has been obtained from the person or where this is not possible; consent shall be obtained from their formal or informal guardians and supporters.
When reporting to funding bodies or for accreditation purposes, QAI will endeavour to use case examples with the consent of individual clients of our services. However, where the example has been de-identified and the circumstances are not acutely unique to the individual, QAI’s individual services are not obliged to obtain full consent.