Abstract
According to the World Health Organization, over 1.3 billion people, worldwide, currently experience disability. This is approximately 16% of the global population. This number is growing every year, due to an increasing lifespan, and an increase in mental health issues and non-communicable diseases in our communities (World Health Organization, 2023). In Aotearoa New Zealand, one in four people currently live with a congenital disability or Ala; acquired loss of ability. This thesis focuses on the lived experiences of Tama’ita’i Sāmoa (Samoan women) with Ala. When looking for participants for this research, the majority of respondents objected to the word “disabled” or “disability” during our initial Talanoa (discussion). Creating the term Ala, which is a word from gagana (language) Sāmoa usually meaning pathway, I have made it an acronym to describe the new term our Tama’ita’i Sāmoa contributors found more acceptable to describe their condition; Ala – acquired loss [of] ability.By honouring the thoughts and feelings of potential respondents and participants, and creating a more acceptable term to describe their lived experience, nine courageous Tama’ita’i Sāmoa agreed to participate and fa’asoa (share) their stories.
This thesis holds the stories of Tama’ita’i Sāmoa who are navigating Ala as individuals, and how cultural beliefs, both traditional and colonial, have informed how tagata (people) Sāmoa perceive Ala, influencing the way they react when Ala invades their aiga (family) spaces. In the majority of the stories shared by Tama’ita’i Sāmoa, a secondary Ala related to mental health followed a primary Ala that was either physical or sensory. Traditionally, the care and well-being of tagata Sāmoa (Samoan people) with Ala was a shared responsibility within the aiga and village structure. As Sāmoa entered its Christianisation age, from the 1830s, biblical teachings of moral wrong-doing and sin discoloured the lens through which Ala was viewed. This new lens resulted in a blanket of shame and stigma being cast over Tama’ita’i Sāmoa who were forced during their lifetime to navigate Ala. This research provided a safe space, as mentioned in the title – “e mapu iai Tama’ita’i Sāmoa” for Samoan women to find rest, relief, and support, for our Tama’ita’i Sāmoa to feel safe and free to give voice to the fear, shame, stigma, judgment, and heart break they each carry.
The tulaga vae (position or standing) of this thesis weaves itself into the tupu’aga (geneaology) of Pacific Studies. Planting the seeds of this work in the fertile fanua (land) of Pacific Studies has been courageously prepared, fertilised, and blessed by many pioneer Pacific knowledge-holders, academics, and scholars who came before me. The nine Tama’ita’i Sāmoa contributors are not just “objects of study” or “problems to be solved”, but thoughtful theorists about their own complex situations.The interdisciplinary freedom that exists within the Pacific Studies space enables me to honour and centre our Indigenous Tama’ita’i Sāmoa voices, while providing tautua (active service) and reciprocal hospitality that is familiar and genuine, giving them an assurance of belonging and ownership of the gifts of fa’asoa (sharing their lived experiences) they have contributed.
I propose that the use of Sei Fa’asoa methodology, developed specifically for this particular research project, is most appropriate and generative because of the sensitive nature of Ala. The stigma experienced by our Tama’ita’i Sāmoa forces them to navigate Ala without the knowledge and support of aiga and loved ones. Creating a methodology that focuses on holding safe spaces for the voices of Indigenous Tama’ita’i, especially for Tama’ita’i Sāmoa voices in the context of this research, enables their often vulnerable and overlooked voices to be heard, acknowledged, and honoured.
The ultimate purpose of this thesis is to increase awareness of Ala in our aiga, create safe spaces in our communities for Fofō Fa’asoa (healing through sharing our stories), and discuss and implement collaborative ways for our aiga. This informed, involved, and supported beloved Tama’ita’i Sāmoa who are navigating Ala. Our stories hold the tools of Fofō Fa’asoa that allow us to hear authentic truths about Ala, dispose of misinformation and problematic assumptions, rewrite safer narratives, and hold each other in safety while listening to each fa’asoa.At the same time, the Indigenous-centred methods and original findings of this thesis can contribute meaningfully to critical and professional conversations about Ala in other disciplinary and clinical spaces. This thesis gives voice to genuine connections, empowerment, realistic options, and opportunities for better understanding, healing and the building and nurturing of safer more enlightened ala (pathways) for the Tama’ita’i Sāmoa who is navigating Ala.