Abstract
Having walked in both the hearing and hearing loss worlds offers me a unique auto-ethnographic and, at times, ethnographic research opportunity, which enables the application of multi-method qualitative research.
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Notes
- 1.
The families were understandably desperate to save the lives of their babies and children but they were frequently unable to cope financially with the expense of spending months at the only national paediatric hospital in New Zealand (NZ) and then after bone marrow transplant setting up their homes for their infants when they were discharged. This report, which as ethnographer I developed using the participatory action research model, sought family responses to a series of questions, the answers of which underscored the need for the NZ Government to approve eligibility for the Handicapped Childs Allowance for caregivers of children living with all types of primary immunodeficiency disorders. The issue was then raised with our Member of Parliament who had our eligibility to receive the Allowance raised as a question in the New Zealand House of Representatives (Parliament) Debating Chamber. As a consequence, the Handicapped Childs Allowance was then formally granted by Parliament to families raising children with Primary Immunodeficiency Disorders, including my own family.
This was a collaboration of affected families who engaged in the political process and then achieved social justice. It clearly showed how participatory action research and ethnographic questionnaires can shape positive engagement with decision makers, enabling the provision of evidence to change the life outcome for families like ours. It was a very powerful learning experience that underscored why I have repeatedly used this model of research to good effect.
- 2.
Fortuitously, when our two oldest children were 2 and 4 years of age, an Immunologist who worked internationally with families like ours overseas began practising in New Zealand. There was no paediatric immunodeficiency outpatient’s clinic and he was kindly “given” a small amount of time from the national paediatric hospital renal outpatients clinic allocation. Though extremely grateful, once again, we felt like we were the charity families that it was not beneficial to invest time and a budget in, as life expectancy and quality of life were both questionable.
The Immunologist who provided much appreciated clinical care of our children confirmed the genetic primary immune deficiency disorder that our children had and said that if we could support them to become adults they would then have what he termed as their rainbow years with the need for minimal medical intervention. This has proven to be correct.
But the reality was that, at that time, we lived in social isolation as we had minimal support whilst we were going through probably the worse of experiences that a young family could go through and because the overall syndrome our children had was unidentified, though various components of it such as the primary immunodeficiency component and the sleep apnea were, we lived a very uncertain and nebulous existence, unsure of what to expect next.
We became marginalized from our usual peer social support structures as we did not have the energy to maintain such relationships whilst we focused on meeting the needs of our children and coping with the grief of our situation. Thankfully though both sets of grandparents were support stalwarts. We evidenced that children with disabilities, whether physical and or medical, are shunned by society or at least kept at a distance, presumably because they are unable to contribute back to society at the level expected and required.
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Sinden-Carroll, L. (2019). Research Design and Methods: Change for Good. In: Auto-ethnography in Public Policy Advocacy. Springer, Singapore. https://doi.org/10.1007/978-981-13-1322-6_3
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