Let’s rethink the way we look at deafblindness to see the whole person, not just one condition. Here’s why.
BY HANNAH MCPIERZIE
When the term deafblind is used, lots of people’s thoughts go to the extremes – complete loss of hearing and vision. Some don’t like to use it in case people find it startling. Others genuinely believe they’ve never met a person with deafblindness.
What if we reframe the way we look at deafblindness? Instead, think of people who have hearing loss and vision loss. Perhaps some balance issues too. Is this a picture we can relate to? Particularly in an ageing population?
I didn’t realise I was deafblind until an occupational therapist gently informed me that it was a more appropriate label for my disability. I had been using the term deaf (lowercase d) as I have bilateral, profound hearing loss. But it wasn’t cutting the mustard. It didn’t include all the other barriers I was facing.
I have Neurofibromatosis Type 2 (NF2) and the tumours in my body took my hearing, destroyed my vestibular system, and are wreaking havoc on my vision.
I have two auditory brainstem implants (one which works) to access sound. My hearing is now stable as the implant is tuned to my body and in a natural sense, I cannot get any deafer.
But my lack of balance and my worsening vision are on a shifting landscape, dependent on my fatigue level, the time of day, and the rate of tumour growth.
I regularly attend hospital for various clinics; I go to four of the major public hospitals in Perth. Each one is fraught with barriers.
An audiology clinic won’t consider patients may also have vision loss. An ophthalmology clinic won’t consider patients may also have hearing loss. An ENT clinic won’t consider patients may also have balance issues.
It looks ridiculous when it is written down, but it is the reality. Any audiologist would tell you that a person with hearing loss could likely have balance issues, and may have impaired vision, yet treatment is at odds with this.
In Australia, deafblindness is defined as “a unique and isolating sensory disability resulting from the combination of both hearing and vision loss or impairment. This has a significant effect on communication, socialisation, mobility and daily living” (Deafblind Australia, 2018). The term ‘dual sensory loss’ is also often used, interchangeably.
Something I feel that gets missed in the various definitions, is that deafblindness is a spectrum. It includes losses of hearing, vision, balance. Some senses are more affected than others. Most likely they will continue to degenerate and move into another part of the spectrum.
If you think of the colour yellow, there are so many shades, yet we still consider it to be yellow. Bright, pastel, neon, warm. One yellow isn’t ‘more’ yellow than the next. It’s just a different presentation.
Take me, for example – I am profoundly deaf, I no longer possess a vestibular system, and I have a brain tumour paralysing my optic motor nerve – causing wicked double vision. I am deafblind but I present differently to the next person in my community.
Many people in the older population come under the deafblind umbrella, even though they were able-bodied for most of their lives. The outdated, binary view we hold around deafblindness means sensory loss diagnoses continue to run parallel.
This multi-sensory loss is isolating, and people can feel very hopeless, with high rates of depression. The activities, resources, and training in health care need to catch up with the reality.
Deafblindness is both a condition and an identity. Some people may be clinically deafblind, yet do not use this term to describe themselves. This is a personal choice, but the care provided by health professionals must always reflect the condition.
Some pointers:
• Reception – how do patients know their name has been called? Is there a screen that can display this? Is there a ticket system?
• Lighting – make sure the patient sits with their back to any windows to assist lip reading and reduce glare.
• Speech – are masks being worn in clinic? How will this impact a consult? Are you facing the person as you talk to them? Avoid talk-and-walk and talking whilst facing the computer screen.
• How can the patient contact the clinic? Is there a phone number and an email? Is this email regularly checked?
*Hannah McPierzie will present on deafblindness at the Audiology Australia 2025 Conference in Adelaide.
About the author:
Name: Hannah McPierzie
Qualifications: Disability consultant, speaker and advocate. SensesWA senior educator. Former education support teacher of students with disabilities.
Affiliations: Deafblind West Australians chairperson, Deafness Forum Australia non-executive director, University of Melbourne sessional lecturer, Birmingham City University guest lecturer, University of Sydney collaborator, MED-EL HearPeers mentor.
Location: Perth-based, working across Australia.
*Hannah McPierzie will present on deafblindness at the Audiology Australia 2025 Conference in Adelaide.
