The power of information and coping with albinism: An autoethnographic study

Abstract

This article aims to ascertain the purposes for which the author needed information when her children with albinism were born, as well as explore the mechanisms she used to find information and the challenges she experienced when searching for information. An autoethnography method is used to share her lived experience of albinism, and the data has been collected through the author’s personal memory by recalling events that happened when she gave birth to her daughter in 2013 and her son in 2016. Information played a crucial role in helping the author to understand albinism better and to deal with her predicament. As a librarian and the mother of children with albinism, the author explored different mechanisms to find information. The Internet was the main source of information, as well as organisations such as Support in Namibia of Albinism Sufferers Requiring Assistance and the Namibia Albino Association Trust, which deal with the plight of people with albinism in the country.

On the Enduring and Fleeting Uses of the Teaching Statement

“…Like other researchers, librarians are drawn to the methodology's potential for creative, reflexive, personal, and justice-minded research (Deitering 2017, 7-8). To offer just a few recent examples, librarians have used autoethnographies to imagine truly BIPOC-centered library staffing (Shearer and Chiewphasa 2021), explore the information needs of people with albinism (Ngula 2023), and reflect on racialized embodiment in library spaces (Santamaria 2020).…”