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Carmela standing at beach holding grandson, Hunter.

I have been hesitant to share this story. Looking back, I would have done a few things differently.  


My mum was a Stage 4 Lung Cancer fighter from 2011 to August 2021. She spent nearly 10 years in our broken health system in Australia. She is profoundly Deaf and lived with my dad and younger brother in Adelaide, South Australia.  

Unfortunately, like every other state in Australia there is a shortage of Auslan interpreters. Public hospitals are usually responsible for organising and paying for interpreters. When the hospitals couldn’t provide Auslan interpreters for many of my mum’s appointments she took steps to engage her own interpreters online.  It doesn’t usually happen in Australia but she was able to get additional NDIS funding and a letter from the NDIA stating that she could use her funding for hospital appointments.  


Mum was a private person, she requested for many years not share her cancer news. She never lost much of her hair throughout her chemo, so nobody suspected a thing. This was tough for me; the deaf community is very small and I was within it as a CODA (Child of A Deaf Adult) and also an Interpreter.  People would often ask how my mum was, of course I respected her wishes and kept her secret.  I understood her point of view, she was always sympathised for being deaf, so I assume she didn’t want to double the sympathy being a cancer patient.   


She had a tough time in 2018 and when she got sick with Pneumonia (which for her cancer wasn’t good). I was living in Queensland at the time. I remember the FaceTime call with my dad so clearly; he told me that mum had been taken into hospital into the Emergency Department as she had some shortness of breath. Dad soon told me that they admitted her when she started to decline quickly and had now been moved in the Intensive Care Unit (ICU).  


Whilst Mum was in hospital, my dad called me to see if I could interpret the conversation with the doctor and himself. My younger brother wasn’t around, he would sometimes help out with interpreting if I wasn’t around. After I had interpreted the phone call with my dad, I knew things weren’t good. The doctor said to me “Can I give you a call to have a chat about the situation?”. He called me and confirmed my concerns. The doctor asked me to fly down to Adelaide ASAP. This was before COVID so travelling was easy, I jumped straight on a plane and was in Adelaide the next day. I arrive at the hospital with my dad. Hospital policy only allowed 1 person into the ICU room. I go into the room alone and see my mum in an awful way. She had a ventilator and was all swollen. She was highly medicated and had a nurse all to herself, 24 hours a day. I had seen her admitted to hospital plenty of times over the years, but this one was the worst. Overwhelming to say the least. I stayed for a couple of days by her bedside. 


Being Deaf, my mum couldn’t communicate with the nurses so the hospital let me stay overnight so they could communicate. They wanted her to write things on a piece of paper but she could hardly breathe – writing wasn’t an option. Without someone by her side, she would have panic attacks which affected her ability to breathe. She was in an awful way and her health continued to decline even more. 


We had a family meeting with myself, my brother, dad and the doctors. I interpreted the meeting. I am a qualified interpreter and jumped straight into the professional role. This made me feel like I had no say and couldn’t share my feelings. The doctor asked me to ask my dad, “do you understand what’s happening?” He replied, “not really, but she doesn’t look good.” The doctor said, “well nothing is seeming to help your wife. We aren’t sure if she has an infection or if her cancer has spread but we think it’s time to ask family members to come and say goodbye”. Obviously, my dad was shocked by this, he knew she wasn’t in a good place but this was the first time anyone had ever told him that she may not survive this. Meanwhile, I’m interpreting this with tears streaming down my face. I felt like the most unethical interpreter.  In the back of my mind, I can’t help but think ‘why am I the one that has to break my dad’s heart, I am the only one that sees his true reaction.’ That was truly one of the hardest things I’ve ever interpreted in my career. 


The doctor then asks to speak with mum. I go into mum’s room with the doctor, she has just woken up. The doctor sits down and says to mum “I just want to let you know that we have tried everything to help, so we have just told your husband and children that we think there is only a few more days, so it’s time to ask all your loved ones to come and say their goodbyes”. She doesn’t respond, the doctor repeats himself and says, “We are really sorry we couldn’t help; nothing seems to be working, we think you may die.” She is the most unresponsive that I have ever seen her, and she doesn’t say much back. Now it was a waiting game, to see whether she was sick with an infection or if the cancer had spread. 


A couple of days pass, amazingly after prayers and family flying across the country to say goodbye she started to improve. Like they always say, tell a strong woman she can’t get back up, she sure as hell will be getting back up. It was a slow recovery for her, I will always admire her determination and resilience.  

My mum passed away a few years later in August 2021, I miss her beyond words. 


How have we learnt from this personal experience? 

If I was put in this position again, I would advocate for the hospital to engage a NAATI qualified interpreter to attend the hospital meetings and consultations that isn’t related to the patient. This would have allowed me to contribute to discussions with the doctors and health professionals throughout and support my family. This unfortunately happens every day within our health system in Australia. We all need to be advocating for Deaf people’s right to an impartial interpreter every day. 


I want to thank ANY Auslan or Deaf interpreter working within Palliative care, oncology or funerals. As tough as the job may be, there are lots of people that are in need of communication support and Deaf people should not have to suffer in silence without an interpreter. Counselling or EAP (Employee Assistance Programs) services should always be provided through your place of employment for all interpreters. 


This is the reason Anytime Auslan have made a promise to our Deaf community that will always try to get Auslan interpreters, anytime, anywhere. 


Make sure you check out our friend’s Gary’s Rebuttal blog, following this story.


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