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Ethics is essential to the research process. It ensures that the research is both rigorous and that the participants and content are not exploited. Unfortunately, historically, people with disability have been subject to research in a less than ethical manner. This not only includes research that exploited people with disability as subjects but also includes research that did not adequately recognise people with disability’s voices or as genuine co-creator’s.

At PWDA we recognise ethical research as that which genuinely and respectfully acknowledges the role, voice and lived experience of people with disability. At PWDA we prefer to support research that is driven by and for people with disability. Our ethics are firmly grounded in human rights as exhibited in the CRPD.

Ethics in disability research is more than a risk management process, it is about ensuring that the research process recognises the voices of people with disability, does not exploit or exclude people with disability regardless of impairment and that the questions explored in the research are completely relevant to and preferably driven by people with disability.

PWDA has strong relationships with leading academics across Australia that undertake and support community led research that is inclusive and aligns with the CRPD.

Any research undertaken by PWDA will be subject to a regular review process by our own ethics committee which will consist of: PWDA members, PWDA Board members, PWDA staff and Management, disability academics, independent stakeholders.

The ethics committee will ensure that all research undertaken by PWDA is consistent with the organisations values, principles and mission and aligns with PWDA’s research protocols.

PWDA is a grassroots, rights based, disability advocacy organisation, run by people with disability for people with disability. Our commitment to research and research ethics reflects every aspect our organisations role and mission.

“Nothing about us, without us”

 

Research at or with PWDA is required to comply with our research protocols. These protocols are founded in our principles which are firmly committed to the human rights of people with disability as enshrined in the UNCRPD, the social model of disability and intersectional awareness.

PWDA is committed to research that is community led and preferably driven by people with disability. We support Inclusive Research frameworks and strongly advocate for genuine co-creation of research with people with disability that is fully recognised.

PWDA supports research that aligns with all or most of the following:

  • Research that is founded in and supports the CRPD.
  • Research questions that have been developed by people with disability for people with disability.
  • Research that includes an Inclusive and or Participatory Action/Emancipatory framework, whereby people with disability are part of the research process in continuum from outset to publication.
  • Research that fully and openly recognises the contribution of people with disability as co-creators and participants. E.g. authorship, intellectual property.
  • Research that properly and respectfully remunerates people with disability and their representative organisations for research participation in any form.
  • Research that does not exclude people with disability because of intellectual or cognitive difference.
  • All research documents are to be accessible including in Easy English.
  • Research participant consent forms need to have an open exit option, should the participant wish to cease participation.

Research applications that do not fulfil all of the above protocols will be considered on a case by case basis.

Research Partnerships:

PWDA can provide expertise in disability research and policy development. This expertise may take the form of advisory or reference group participation, consultation on research projects or program development.

Time frames: PWDA will not consider partnership proposals that fall one month before the application deadline.

Researchers are encouraged to engage with PWDA at the earliest convenience regarding all research propositions

PWDA offers consultancy services on a fee for service basis. See the Forms section for Fee Schedule.

All enquiries to This email address is being protected from spambots. You need JavaScript enabled to view it.

“Nothing about us, without us”

PWDA supports disability research that is primarily driven by people with disability to answer the questions and issues that are most important to people with disability, ensuring their voices are clearly articulated and heard. This is community led research.

Community led research includes the use of inclusive research and participatory action research methodologies as potential research frameworks. It is grounded, narrative qualitative research that draws out the voices of people with disability that are then analysed with rigour and reported.

PWDA has been involved in research since its inception and was directly involved in the field work that led to the development of the UNCRPD.

Most recently PWDA has been involved with the Royal Commission, conducting focus groups and interviews with people with disability who experienced abuse as children in institutions. Findings were reported to the Royal Commission along with recommendations, a number of which have been included in the Official Report.

PWDA also conducts research on behalf of state and federal departments and also supports research with universities and other non-government organisations. PWDA’s expertise lies in ensuring the voices of people with disability are heard – “Nothing about us, without us”.

All enquiries regarding research and PWDA should be directed to This email address is being protected from spambots. You need JavaScript enabled to view it.