How does a patient with sensory disability – such as a hearing or vision impairment, or both – get effective communication from a health care provider?

Too often, the answer is that they don’t. Communication is crucial for any professional–patient relationship, not least when disability is in the mix. For people living with sensory disability, however, the challenge of knowing what is going on with their healthcare, participating in shared decision making, and retaining an appropriate level of agency, is even greater. Using verbatim testimony from people with first-hand experience of sensory disability, this book explores issues such as accessibility barriers in consent forms, patient information sheets and other paperwork; situational vulnerability to abuse and neglect; and dehumanisation, infantilisation, and disempowerment in care.

Written by Dr Annmaree Watharow MD PhD, a doctor and author with personal experience of sensory disability, the stories in this book are told using people’s own words, to allow readers to hear directly from the people who most need their own agency. Vital reading for doctors, nurses, health care providers, and social support workers in practice and training, this book will change the way you view sensory disability.

• Cover
• Half Title
• Title Page
• Copyright Page
• Acknowledgement of country
• Acknowledgements
• Abstract
• Table of Contents
• Content warning
• Learning objectives
• Introduction
• 1 Miscommunication and pain: Way markers on the 
patient journey
  • Touch points and pain points
  • Jane’s journey
    • At the hospital
    • After discharge
    • Take home messagesx
• 2 The undeniable importance of communication
  • Responsibility
  • Benefits of good communication in hospitals
  • Poor communication and risk
    • COVID-19 compounds communication difficulties
  • About communication disabilities
    • Causes of communication disabilities
    • Communication assistance
      • People
      • Devices
      • Software/apps/computer technology
      • Types of signing and writing
    • My position
  • A need to be seen and heard
• 3 Who are we?
  • Deaf culture
  • Deafblind culture
  • Single sensory loss
    • Hearing loss (hearing impairment/hard of hearing/deaf/Deaf)
    • Vision loss (low vision/blind/vision impairment)
  • Dual sensory loss 
(deafblindness, Deafblindness, 
dual sensory impairment)
    • Types of dual sensory loss
    • Usher syndrome
    • Dual sensory loss data
  • Multiple disability
  • Hidden populations
    • Children and adults in the time 
of COVID-19
    • Young people
    • Older people
    • Indigenous Australians
    • Homeless people
    • Invisible second or third disabilities
    • Veterans
    • Prisoners
    • Rural and remote dwellers
    • Developing nations and the Global South
  • Expect and prepare for communication disability
• 4 Health threats
  • Social structures 
and environments
    • Attitudes, ableism, and intersectionality
    • Social exclusion and isolation
  • Reduced healthcare access 
and knowledge
  • Gender-based threats
  • Communication failures
  • The risks of hospitalisation
  • Physical health threats
  • Psychological and 
cognitive threats
  • Public health threats
  • Nothing about us without us
• 5 The triple burden 
of COVID-19
  • An Australian triple jeopardy
  • Disaster discourse
    • What life without lockdown really means
    • Freedom is not freedom if all are not free
  • Disaster responses
    • The unbearable consequences of exclusion
  • Adversity and opportunity
• 6 What really happens in hospitals
  • Qualitative data: Lived experience
    • Accessibility, access to information, and communication
      • Forms and information
      • Aids to communication
      • Accents
      • The environment, mobility, and orientation
    • Abuse, neglect, dehumanisation, and the loss of dignity
      • Abuse
      • Neglect
      • Dehumanisation
      • Dignity
    • Negative touch
    • Loss of agency and exclusion
    • Fear and distress
  • A drastic failure of care
• 7 Security. Knowledge. Power
  • Ontological security: The fundamental sense of safety
  • Knowledge
  • Power
  • Mediators of power
  • Issues compounded
• 8 The expert-knowers speak: Patient-led strategies
  • Asking the experts
  • Patient preparation
    • The long view
    • Hospital (and disaster) preparedness
      • Kit availability
      • What to include in a going-to-hospital kit
    • Signalling staff: Wristbands
    • Learning new strategies
      • Using signals to communicate
      • Communication assistance tools
    • Valuing voices
  • My hospital kit: A real-life example
    • Deafblindness
    • Usher syndrome
    • Communication information
  • Patient preparedness is 
not enough
• 9 Respect. Communication. Care: Professional-led strategies
  • Professional revolution
    • Be humane
    • Do your job
    • Communicate using the patient’s preferred mode/s
    • Explain
    • Handover. We repeat: handover
    • Read the notes
    • Engage with the support network
    • Answer that buzzer … now
    • Orient for safety’s sake
    • Own your accent
  • Healthcare workers with sensory loss/es
  • In practice
    • George
    • Linda
    • Annie
    • Ben and Tom
    • Rhonda
  • Systemic overhaul is needed
• 10 Strategies for systemic transformation
  • Systemic transformation
is obligatory
    • Accessibility
    • Ending the “lucky dip” of proficiencies: Improving expertise 
and knowledge
    • Investment in long-term health 
and wellbeing
  • Border concerns
    • Employment
    • Ageing and aged care
    • Aged (no) care
    • Social isolation
    • Healthcare access
  • ASK: Acquire Specific Knowledge
• Suggested 
learning activities
• Recommended further reading
• References
• Index

Annmaree Watharow MD, PhD has a medical degree, a Masters in Psychological Medicine, and a PhD on the hospital experiences of people living with sensory disabilities. Her current research and advocacy centres around improving accessibility, communication, care, and outcomes for people living with disabilities, especially in pandemics. She has lived experience of disabilities.