Opening My Heart: Writing and Autoethnography as Healer

Abstract

This paper examines my lived/living experience (LE) of acquiring disabilities due to the diagnosis of a rare young onset dementia. Through autoethnography, it provides insights into the healing powers of writing. It briefly examines the advocacy and discourse of dementia charities, and considers if they are causing harm and increasing, not reducing, the issues faced by people living with dementia (PLWD). It highlights that stigma and attitudes towards PLWD are worse than they were five years ago. It introduces audism, a new concept in the field of dementia and discusses the continued paternalism, stigma, and benevolent othering  of people with dementia. It then explores the healing which took place through journalling and blogging. Both forms of truth telling, were unexpectedly enhanced through applying autoethnography to my own writings. It includes insights into the grief PLWD experience, and the power and pain of music for PLWD, as music therapy is not always helpful or healing.  Instead, it can cause further grief. Using autoethnography as method was illuminating, meaningful and healing, also raising many questions for future writings and research, as well as current care practices.