In my work as a primary care physician, I was shocked by what some of my patients said about being deafblind or sensory impaired in hospital. One went four days without food or water – nobody on the Ward indicated where it was. He became dehydrated and was in acute kidney failure – an avoidable medical misadventure. Even as I have acquired career-ending deafblindness – knowing my patients’ narratives didn’t prepare me for an emergency hospitalisation where I felt invisible, and was neglected, misunderstood and isolated. I went home traumatised.
From these beginnings a PhD in hospital communication of the deafblind and dual sensory impaired is a tangible contribution I can make to changing laissez-faire attitudes towards care of and communication with these heterogenous patients. As I interview people, and read the scant literature, and scarcely more prevalent personal accounts, I realise the narrative space of the deafblind experience is different – temporality in the space is elongated. Time is spent in making appointments, organising support, and in consultation with carers and physicians. The physical space of doctor-patient dialogue is occupied differently with more participants (including service animals). Health care workers must therefore derive greater understanding of the realities of sensory impairments to provide care that is just, individually specific, and safe.
"Out of Adversity Can Come Opportunity: Some Observations on the Different Narrative Spaces Occupied by Deafblind Patients,"
Survive & Thrive: A Journal for Medical Humanities and Narrative as Medicine: Vol. 5
, Article 8.
Available at: https://repository.stcloudstate.edu/survive_thrive/vol5/iss1/8