Ms Tanya Lehmann1
1Parent, North Plympton, Australia
Biography:
With the support of an Australian Postgraduate award, Tanya completed a Master of Arts at Flinders University. Working in different educational settings has shaped her understanding of event management and business services and for over 17 years, Tanya has contributed to foundational tourism courses at the University of South Australia. Her personal journey with her second son, who is profoundly deaf, has ignited her passion for equal access to the arts. She has been invited to participate in government-hosted inclusion roundtables and has been selected to work with the Australian Childhood Deafness Community Advisory Group.
Abstract
Family journeys are pivotal in identifying challenges and opportunities within the context of newborn hearing screening. It became evident parenting a profoundly deaf child, being active in online forums and in-person meetings that the language used at the time of diagnosis, for some families, continues to be discouraging. Unintentionally is often exclusive, instils fear, confusion, sadness and diminishes choice. Word choices, such as ‘sorry’, can suggest that the baby is ‘broken’ and needs to be ‘fixed’, in contrast to how the parent sees the baby. Be ‘sorry’ if the way you communicate a diagnosis is scripted, impersonal or insincere.
Autoethnography is a research method suited to this data and it is evident that shared experiences of newborn screening are similar: Parents are told their baby’s hair is too thick for testing equipment, their baby is too wriggly, the equipment can’t be located, or ‘failing’ is nothing to worry about and probably fluid. Many who have asked for support shared common experiences; they were so reassured about the ‘routine’ comprehensive hearing assessment that only one parent attended, they were unprepared for the ‘fail’ diagnosis, which one parent navigated alone.
Many services operate in isolation when parents/caregivers often need a village, a holistic partnership with the family, recognition that they juggle siblings, paediatricians, lactation or sleeping specialists, allergists, gastroenterologists and even postpartum depression.
If there is hope for a better future, people will be vulnerable and tell their stories. Together, we will learn from the challenges and see them as opportunities.