The stories we tell: growing up in high-tech medicine

Nadine Tanio;
Nadine Tanio, UCLA, Graduate School of Education and Information Studies

Sydney 2018: Infrastructure and co-design

My work explores how young heart transplant patients envision, articulate and navigate their transition from pediatric to adult medical care. In other words, it focuses on how young people learn to care for themselves in the context of high-tech modern medicine where biotechnological advancements, like organ transplantation, are transforming our understanding of our bodies and ourselves and challenging the boundaries between humanity and machine, humanity and other animals. In these existential spaces, young people, too, are positioned at the forefront of pioneering technology and knowledge production.

I share, from an ongoing youth media project, video shorts about transplant, transition, and translation. Each short is collaboratively crafted to educate others (including peers, medical and family caregivers, other patients and educators) about life in the spaces opened by high-tech medicine and the challenges of transition.

Through educational research focused on storytelling, I learn about the making and doing of youth narratives: what stories are considered important to tell, what gets chosen or discarded, and how, in the ways of making and doing knowledge is produced. 

All transitions are imbued with risk and possibility, but for heart transplant recipient’s transition is a particularly perilous time when adolescents and young adults have higher mortality rates than their younger cohorts. Through this multimedia presentation, I reflect on narratives of positionality, of practice, and of pedagogy that create communities for learning and living within the transitory spaces of high-tech modern medicine.