Discussion
The community recognised other important issues that they felt were crucial to raise and discuss. These topics were considered essential for further consideration amongst our community members that would ultimately shape the future for Pacific disabled people and their families.
1. Whaikaha Stewardship role
Central to improving tangible outcomes for all disabled people is the stewardship role that Whaikaha holds. This role enables Whaikaha to collaborate with other agencies to integrate disability perspectives into their policies and services, build capacity and capability within the public sector, and share responsibilities in a consistent and unified manner that helps remove barriers that prevent disabled people from fully participating in society.
I think if I could just share a story... Whaikaha is now the essence of disability support. I believe it's about asking what more they can do for us, bridging the gaps that have been left unfilled”
(Youth & Autism Talanoa)
Based on feedback from the community, we have heard several key challenges affecting Pacific disabled people and their families in their daily lives. The high cost of living was a recurring theme throughout the talanoa process across all villages 2. The impacts of rising cost of services, transport, school fees, affordable housing, and medical expenses have become increasingly burdensome. These rising costs not only strain financial resources but also force difficult decision-making processes, as families must continually re-evaluate their priorities and allocate their limited resources to meet both immediate and long-term needs of the family member with a disability.
Pacific disabled people living in semi-rural villages expressed the compounded challenges they face. Particularly, in accessing specialised services that are more readily available in large urban centers. Achieving tangible outcomes for Pacific disabled people, their families, and the wider community would see collaborative efforts from various government agencies that ensure meaningful change and a more equitable society for all.
2. Pacific perspectives on Enabling Good Lives
Following our community consultations, we observed that many Pacific disabled people, their aiga and carers, were unfamiliar with EGL (Enabling Good Lives) and its principles. This lack of awareness was particularly noticeable among families in villages[1] where EGL and its principles were not present. However, in the villages where EGL initiatives were present, families have shared accounts of its benefits and how the approach has positively impacted their lives, prompting others in their community to join in and benefit from it as well.
EGL aligned with my family members goal and was able to find leisure activities that allow our family to participate.”
(Horowhenua Talanoa)
Some families have brought up notable points about how the approach may be able to accommodate Pacific cultural values, and practices. One significant perspective they shared is that, while the principles prioritise individual strengths, from a Pacific context, there may be room to further acknowledge the role of the broader family unit. This is particularly crucial in the Pacific context, where the family holds immense value and importance. Prioritising the collective well-being of the family is a fundamental aspect of maintaining communal harmony. This value not only shapes our societal norms but also is central to the Pacific way of life.
The community emphasised that families serve as the foundation upon which their communities thrive. This familial support too often leads to families, or even the extended family to care for their own disabled person, which may partly explain the underutilisation of mainstream services, especially where these services are unavailable or culturally inappropriate. Despite these shortcomings in the broader system, families will often take the role of caregivers and provide support when the broader system fails.
3. Young Pacific disabled people & Autism: A whole of life approach
During the talanoa, our young people have expressed a desire for a lifelong, intergenerational approach in the Action Plan that supports them across all stages of their lives, ensuring continuity rather than focusing solely on specific phases. They aspire for equal opportunities in education, employment, housing, and the chance to fully participate in and contribute to society.
The plan needs to be intergenerational minded and looks after each life stage, for youth, especially in the transitional years”
(Youth & Autism talanoa)
They aspire to the same life outcomes as their non-disabled peers. Throughout the engagements, we heard that educational institutions, including schools and universities, are often inadequately equipped to support disabled students and their needs. They fail to provide the necessary accommodations and personalised support plans, hindering academic success but also limiting other opportunities for them. There is also a lack of focus on the transition period after they leave school, which leaves many disabled students without the essential resources and support needed to navigate the shift, to post educational life.
I was at a boarding school for 2 years, after that I had no support for 3 years. I had family but no external support. It has been a struggle, and I have only had volunteer work."
(Youth & Autism Talanoa)
Their families have also shared the challenges they face in finding employment opportunities that accommodate the disabilities of their loved ones. Too often they see barriers put in place by workplaces that prevent inclusivity and hinder the full utilisation of their talents and abilities.
Parents have expressed feeling unprepared and isolated when determining the right time to seek medical advice for their children's and their symptoms. They describe receiving fragmented information and learning about available services only later. They stress the importance of timely communication regarding these services and emphasise the significant value of early intervention that is affordable and easily accessible for their child or family member.
In regions where services are insufficient to meet the needs of Pacific disabled people, numerous support groups have emerged. These groups appear to compensate for the shortcomings in supports provided by government agencies. They offer essential information for navigating systems, provide crucial support during times of crisis, and create a safe space for emotional support, addressing the significant challenges and stresses faced by both disabled persons and their families.
4. Defining who we are: Our community’s pathway forward
We are currently using the term 'Pacific disabled people' in our documentation. However, in our various Pacific languages, there is no commonly used wording that describes disability in a way that is mana enhancing and is positive. Using positive and affirming language is crucial as it allows for greater receptivity and acceptance within communities, enabling them to understand but also embrace disability within their own families and wider communities.
In our culture, the word carries very negative energy and connotations: not being whole, lacking any quality of life, and depending on others for support and assistance”.
(Timaru Talanoa)
Specific terms for disabilities like Autism, Intellectual disability, etc., do not exist in our Pacific cultures and languages. We have heard from parents and family members that they are reluctant to use the current terminology in their respective languages to refer to their disabled child or family member. This issue could pose an ongoing barrier for families striving to create an environment conducive for acceptance and understanding of disabilities. It may also limit efforts to raise broader awareness about the challenges and realities faced by disabled people.
Another key point raised, was the importance of employing a specific term to refer to Pacific disabled people. This suggestion emphasises the benefits of ensuring greater consistency and standardisation across agencies to strengthen policy development and implementation within a Pacific space.
Various perspectives were shared regarding how Pacific disabled people prefer to be described, and the challenges in reaching consensus on a unified term, given the diversity of Pacific cultures. It was recognised that naming rights are deeply significant and sacred to each Pacific Island group, making consensus difficult to achieve.
However, some community members have expressed diverse preferences regarding the terminology. There is preference for the term “Pacific disabled people/person” among some, while others favour “Pacific person with disability”. Others have emphasised the importance of using the name chosen for their child at birth. Despite this, all can agree that ensuring easy access to essential services and adequate funding to support their daily needs was of critical importance.
With no consensus during the talanoa, we will maintain the use of “Pacific disabled person” in our documents aligning with the social model of disability and the language adopted for the New Zealand Disability Strategy.
Defining the word disability/disabled person by various Pacific Island groups during the talanoa:
- Cook Island: Pakipaki ta’i
- Fijian: Taukoto
- Niue: Tagata ai katoatoa e malolo tino
- Samoan: Tagata e iai a’afiaga tumau o le soifua, Tagata Sailimalo, Tagata e iai mana’oga faapitoa, Tagata e le atoaatoa le malosi.
- Tongan: Faingata’a‘ia fakaesino
- Tokelau: Tagata e he katoatoa te malohi
[1] In the documentation, "villages" refers to the regions where Pacific disabled people and their families reside. This familiar terminology allows for connection to traditional and community living that embodies belonging and identity.