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Cassandra Wright-Dole |
Since the early 1980s, I have watched
people’s faces as a matter of necessity. My slow but progressive hearing loss meant I acquired considerable lipreading skills from a young age before my profound
sensorineural deafness was diagnosed at six years old.
When COVID-19 began
gaining momentum in Australia in 2020 and the mask mandates were first
announced, I sat in my car outside the chemist sobbing uncontrollably to my parents on Facetime. After 35 years of successfully reading lips to communicate
with hearing people, I was once again a bewildered three-year-old child,
surrounded by meaningless noises laden with social expectations.
In many ways, the
lockdown was my saviour, protecting me from the uncomfortable task of dealing
with people who thought that simply turning up the volume of their voice behind
three layers of fabric would cure me of my disability.
While lockdown gave me a layer of
protection from dealing with the masked world in a general sense, an unavoidable
aspect of the COVID-19 world is the need to be tested. The recent high case
numbers of Omicron infections, extended family members testing positive
following the new year celebrations, and the lack of available Rapid Antigen
Tests saw my husband, our son and I in line for a standard PCR test. We had
been fortunate enough until then, and it was only my second test and their
first.
When I reached the end of the line at my
first testing experience, six and a half hours later, my human rights weren’t
the foremost thing on my mind. I was too drained and exhausted to process the
extent to which I was dependent on the kindness of strangers to understand what
the nurses required of me or to inform the nurses that I was deaf and lipread.
I was just relieved that I was inching closer to the finishing line. However, as
someone employed in the accessibility field, I was conscious that my literacy
ensured a smoother transition from the hot sun into the sterile testing hub. There
was nothing to support independent access to information for someone with low
literacy, English as a second language, or an intellectual disability. To the
best of my knowledge, no one was employed to provide communication support
where required.
If my first test was infamous for the
six and half hours spent in line, the second test was notable for the epiphany
it brought. Being triple-vaxxed at the time of my second testing experience, I was
happy with my experiences at the vaccination hub. Masks were removed to speak
to me upon request, I was positioned where I was visible, and staff were
informed of who I was, where I was, and (perhaps best of all) that they needed
to remove their face mask to communicate with me. I understand the stakes are
much higher at the testing sites, and testing staff will not remove their PPE
to speak with a D/deaf person. While entirely understandable from an OH&S
perspective, there must be alternatives that will facilitate informed and
independent communication competently.
While I had been unenamoured by the forced
dependency on the kindness of strangers when being tested alone the first time, the presumption
that my husband had a carer role and would speak for me was tacky at best. For
context, my husband is a disabled veteran. His disability does not stand out the
way mine does, and according to the Australian Government - I am the carer for
both my husband and autistic son. When it comes down to who is best able to
answer the relevant questions in these situations – for us – it is me. Having
been through testing before, I was aware of the administrative process and
prepared to advocate for myself – no kindness of strangers required. Despite my
preparedness, the nurse assigned to me continued to engage my husband rather
than communicate with me directly. For the sake of retaining my mental health,
I have learned to breathe through the experiences that deny me the opportunity
to have access to information or to speak for myself.
If we ask ourselves, ‘are frontline COVID-19
staff being supported at a policy level to engage with people who are d/Deaf,
have low literacy or have complex communication needs,’ the answer is still a
resounding no. Two years into this pandemic, it’s simply not good enough.
Cassandra
Wright Dole
Specialist Content
Writer
Access Easy English
Email: cass@accesseasyenglish.com.au
Website: https://accesseasyenglish.com.au/
Facebook: https://www.facebook.com/accesseasyenglish
Twitter:
@accessEEwriter
LinkedIn linkedin.com/in/casswright