Computer Says No By Rosie Malezer

Rosie Conan

Rosie Malezer

I am a Deaf Australian Aboriginal living in Finland (I am now also a Finnish citizen). On 23.11.2014, I lost my hearing – LITERALLY overnight. I woke up, could hear nothing. My husband spoke and I saw his mouth move, but I heard nothing. I could not hear my cats, the wind blowing outside, the television, my telephone, my alarm to wake me. Not a thing, except for a ringing in my ears. My left ear has louder higher pitched ringing than right ear. Over the past five months, I have been passed back and forth from specialist to specialist, doing many tests (some quite painful) to try and determine what is going on. The Audiologist at TAYS (Tampere Hospital in Finland) advised in November that a Cochlear Implant would not only help me to hear again, but would also remove the ringing in my ears. At all visits, I had my husband and Mother-in-Law with me so that there would be no misunderstandings due to communication. Many hearing tests later, all saying the same thing (I cannot hear, not even through the bone behind my ear) led to diagnosis that I am profoundly Deaf.

Each visit to each specialist, each test, each social worker cost us around 32€ and with well over 10 visits in a five month period, it quickly adds up. The cost was crippling, especially since my Unemployment Benefit was cut immediately on my diagnosis of Deafness and I was instead placed on Sickness Benefit until the hospital could determine what is wrong with my ears. Why can’t I hear? What caused my Deafness? So now, we are buried in hospital bills, but life was made a tiny bit easier when the hospital supplied me with a communication device that enabled me to have a TWO WAY conversation without needing pen and paper. I was also provided with flashing lights in my home to tell me when the doorbell rings. It made things a little bit easier.

After all the tests and the confirmation that I would be receiving a Cochlear Implant in March 2015, I was at peace with the fact that I may never hear again. Being Deaf no longer scares me because I had a support network. I had even let myself be open to the fact that doctors will cut open my head, put a device inside, drill into my skull, thread wires into my cochlear and my brain while hopefully not damaging the nerve that controls my facial muscles. I was ready. And then I receive a letter saying they want me to do one more test. Regardless of how painful it might be, I said okay. I wanted to hear again. I miss my husband’s voice. I miss talking to my family on the phone who live in Australia.

On 11.3.2015, I was led into a small room and electrodes attached to my head. I was then told close my eyes. This is never a good request as I suffer from Agoraphobia with Panic Disorder (since 1996) and panic attacks sneak up on me. But in the past five months, I have found a way to keep them at bay without being unconscious. I have been taking ASL Sign Language lessons relentlessly with a great teacher and have been progressing well with my exams. I decided that I will keep my eyes closed in this final test, but instead of sitting in darkness and letting it take over me in the form of a panic attack, I would sign as much as I could remember without having my papers in front of me with the words. I got through the two hour test (barely) and was quite proud of myself with the amount of words I could sign, as well as the fact that I did not have a panic attack.

The next place we had to be was the Audiologist’s office. She at first refused to use the communication device. Not so professional. Then she used it and typed so badly that I could barely understand what she was saying. Then when she realised that her “mistakes” were crippling a medical appointment that I was again paying for, she suddenly remembered how to spell. She said that the electrodes connected to a computer which showed that my ears were healthy. They reacted to noise which was played through headphones during that 2 hours. Noise I swear on the life of everybody I love that I did not hear. Not a single thing was heard. I told her this and she said I can hear. My husband sat beside her, becoming as angry as I felt, that a so-called medical professional was not hearing MY words. I have not been able to hear a thing except for ringing since 23.11.2014. She shrugged and said “You can hear. The computer told me so.” She then went on to tell me I am obviously crazy and need to see a psychiatrist. I was so hurt, offended, angry, disgusted that I got up and walked out. My husband followed.

I cried my eyes out from the chair in her office all the way to the car, and to home. I had already figured out that DEAF means USELESS to Finland – a country that portrays itself to the world as a leader in Deafness. I guess this is the equivalent of Australia trying to show itself as a leader in human rights. Both of these things are now completely laughable. A total sham. Until you see the world as Hearing and then are forced to see the world as Deaf (a change that happens overnight), you cannot possibly conceive how significantly different you are treated, all of the rights you lose, how you go from being a valuable member of society to being a waste of space.

To add insult to injury, the assistive devices that I have relied on have been demanded back. They are to be returned IMMEDIATELY to the hospital. So now I go back to being Deaf without any help. Back to being able to only communicating with my husband and nobody else. Back to not knowing if the postman has brought a parcel to the door. Back to not knowing if Poliisi or Fire department are knocking because an emergency has happened. I am back to being truly alone.

I love Finland and I love Australia. Don’t get me wrong. I am an Australian Aboriginal who has witnessed horrors within Australia that the media never dare talk about. I am a Finnish citizen who spent five years learning the hardest language on Earth so that I could comfortably live in the most beautiful country on Earth.

UPDATE: Human Rights groups are now investigating the said Audiologist, and it turns out she is a repeat offender. She treats Deaf as non-people. She did end up removing all of my assistive devices, after which an emergency meeting was held between the hospital, my family and a Deaf social worker. The hospital admitted there were big problems with her and assured me that Deafies do matter in Finland. I am starting to believe that the Audiologist is on borrowed time in her job, which gives me some restored faith in humanity. As a newly Deaf woman, I have support networks in Finland, for which I am so grateful.

I actually said this out loud to myself when I was doing the dishes, right after Finland Deaf Association contacted me and said they will help me. I was so glad I made a noise about what happened.

 

~ Rosie Malezer.

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2 thoughts on “Computer Says No By Rosie Malezer

  1. Interesting you woke up deaf. I had hearing loss for years before it packed up on me, but when it did, that happened over a 36hr period. I day I could hear (With difficulty), and with a ‘box’ hearing aid that could knock elephants out of trees with its amplification, the next day zilch. The ensuing 3 weeks after were more a Brian Rix farce than reality,as I went back day after day to the ENT to change hearing aids (I got through 6 none worked for me), and spent a small fortune in batteries which I was convinced were flat. Then a test revealed I had nothing to record in either ear. I’d expected gradual and eventual deafness,because I was told as a teen it would happen and nothing could be done about it,still a shock though ! Computers are programmed by humans,so the fault is probably with them ! They might register a decibel with me,but to suggest it is in any way indicative that I can hear is total rubbish.

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