Appendix 1: Glossary of commonly used Māori and Pacific terms

Appendix 2 | Terms of reference

Terms of Reference                    

Appendix 3 | How we understand disability

The inquiry understands the term ‘disability’ means different things to different people and that the language to describe disability is constantly evolving and contested. We also know that disability communities are highly diverse and include a broad range of people with different experiences and preferences. This includes different understandings of disability in Māori and Pacific communities.

The inquiry’s approach to understanding disability has been informed by some key principles:

• We understand that disabled people, communities and organisations, including Māori and Pacific disability communities, are the experts in framing disability and defining their experiences.
• We respect the rights of survivors to decide how they identify themselves.
• We are guided by Te Tiriti o Waitangi and the United Nations Convention on the Rights of Persons with Disabilities, as these are foundational documents that guide our work and are named in our terms of reference.
• We recognise complexity and nuance, rather than adopting a one-size fits all approach.

United Nations Convention on the Rights of Persons with Disabilities

The Convention is a key framework for the inquiry’s work. It provides the following definition of disability:[i]

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

The language used in this definition differs in some parts from language commonly used in Aotearoa New Zealand about disability. However, the Convention provides the inquiry with a broad view of disability that has informed our understanding. The Convention establishes groups of people who hold rights under the convention and acknowledges disabled people’s experiences of social, environmental and systemic barriers. This is sometimes referred to as the human rights or social model of disability. The definition of disability in the Convention reflects the tireless advocacy of disabled people to reject the medical model of disability “whereby disability was considered to be an individual’s problem, something wrong or broken that could be cured or contained”.[ii]

Te ao Māori and te Tiriti o Waitangi

It is also critical that our understandings of disability reflect the experiences of Māori survivors and are grounded in te Tiriti o Waitangi. We note the ongoing work to describe Māori experiences and understandings of “disability” in ways that reflect Te Ao Māori concepts and beliefs, including whānau and holistic understandings of health and wellbeing.[iii] In line with this, Kaiwai and Allport made the conclusion in their report for the Waitangi Tribunal that: “what is apparent is that the concept of ‘disability’, as it has been understood in the modern Western medical paradigm, had no equivalent within Te Ao Māori”.[iv] This suggests common language about disability may not be relevant for many Māori survivors.

We are also aware of recent work to develop Māori concepts of ‘disability’, including Whānau Hauā,[v] Tāngata Whaikaha and Hautupua.[vi] We also recognise that, as with other concepts and understandings of disability, there is a range of views and preferences in Te Ao Māori. Our approach to language in this report notes the statement in the New Zealand Disability Strategy 2016-2026, that: “Most Māori disabled people identify as Māori first”.[vii]

Language used in this report

We have sought to be respectful in the language we use in this report, while acknowledging that there is strongly felt diversity of opinion. Where possible, we have used survivors’ own words to describe themselves and their experiences. However, when talking about groups with common experiences, we use language that has been promoted by disability communities and organisations.

Some of the language we use in this report includes:

• “Disabled people” and “people with disabilities”. There are different terms used when describing groups who experience disability. Some people prefer the term disabled people, meaning a group of people who are disabled by systems and attitudes from experiencing full participation in society. The term disabled people has also been understood as promoting a common identity for people working together to remove barriers and promote social change. Other people prefer the term “people with disabilities”, as it emphasises the person first, before their experience of disability.[viii] In this report we have generally used the term “disabled people”.
• “Deaf”. Most Deaf people do not identify as disabled, but rather as a distinct community with their own language and culture. Where appropriate, we use the term “Deaf and disabled survivors” to acknowledge this distinction.
• “People with learning disability”. This is community preferred language in place of terms such as “intellectual disability or impairment”.
• “Neurodiversity”. This is the preferred contemporary community term to refer to a broad range of neurological conditions (or “differences”) including Autism Spectrum Disorders, Foetal Alcohol Spectrum Disorders, Attention Deficit Hyperactivity Disorder, dyslexia, dyscalculia, dyspraxia and dysgraphia. These terms are themselves broad and refer to a range of traits.

The inquiry’s terms of reference include the experiences of people with “mental illness” as a key focus for our inquiry. Psychiatric hospitals and other residential facilities, and non-residential psychiatric care are all settings in the scope of our inquiry.  Many people with actual or perceived mental illness do not use the term “disability”. However, they have rights under the Convention, and our use of the term “disabled survivors” in this report generally includes them.

As an inquiry we will continue to listen to disabled survivors and mental health communities in Aotearoa New Zealand and may adjust our language in future reports to reflect this, as the language of disability has evolved since the 2006 Convention.

[i] United Nations, Convention on the Rights of Persons with Disabilities (A/Res/61/106, 24 January 2007)., art 1.

[ii] Stace, H. and Sullivan, M., A brief history of disabililty in Aotearoa New Zealand (Office for Disability Issues, 2020), www.odi.govt.nz/guidance-and-resources/a-brief-history-of-disability-in-aotearoa-new-zealand/.

[iii] Bevan-Brown, J., “Intellectual disability: A Māori perspective” and Ratima, K. and Ratima, M., “Māori experience of disability and disability support services” as cited in King, P.T., Māori with lived experience of disability – part 1: Commissioned by the Waitangi Tribunal for Stage Two of the Wai 2575 Health Services and Outcomes Kaupapa Inquiry (Wai 2575, 2019), p. 4.

[iv] Kaiwai, H. and Allport, T., Māori with disabilities (part two): Report commissioned by the Waitangi Tribunal for the Health Services and Outcomes Inquiry (Wai 2575, 2019), p. 18.

[v] Hickey, H. and Wilson, D., “Whānau hauā: Reframing disability from an Indigenous perspective,” MAI Journal: New Zealand Journal of Indigenous Scholarship 6, vol. 1 (2017) 82-94.

[vi] See: Kaiwai, H. and Allport, T., Māori with disabilities (part two): Report commissioned by the Waitangi Tribunal for the Health Services and Outcomes Inquiry.

[vii] Office for Disability Issues, New Zealand Disability Strategy 2016-2026 (2016), p. 13, www.odi.govt.nz/assets/New-Zealand-Disability-Strategy-files/pdf-nz-disability-strategy-2016.pdf.

[viii] Ferrigon, P. and Tucker, K., “Person-first language vs. identity-first language: An examination of the gains and drawbacks of Disability Language in society,” Journal of Teaching Disability Studies (2019).