Real Life Experiences

REAL LIFE EXPERIENCES OF AUSTRALIANS WITH HEARING LOSS

I'm one of those blokes in what is probably quite a huge group, the ones who don't generally do anything about their hearing, we just put up with it or ignore the problems.  As I've found, when one of us does something about it we certainly don't fit the clich√© of the old fella' with the hearing aid.  I'm just about to turn 50, I've a young daughter, she's just about to turn 10, and yes, hearing aids have been a big step for me to take.  But that got me thinking... why is it such a big step to take?  It shouldn't be!  People wouldn't dream of letting their eyesight deteriorate to the same extent that they'll tolerate from their hearing.  Why?  It's crazy.  My position has made me realise how much we need to raise awareness about hearing loss & hearing health in the sub-60 age group.  Try to remove some of the stigma of hearing aids because as I said to my audiologist... 'they're just ear-glasses' ;)

My son worked during his gap year and did not disclose his hearing disability until he was at interview. He did the same thing for his work experience placement, disclosing at interview but not before. I know many people who wouldn't have even got their foot in the door, let alone received the job if they had disclosed their hearing disability prior to interview.

I have a daughter who also has hearing loss and has faced discrimination and exploitation of her fine capability. Someone asked how can she work as a travel agent if she can’t hear at the counter? The only job offer she received was a part time job at Coles stacking shelves for $8 an hour despite having Cert 3 in Retail, Cert 4 Tourism and doing volunteer work in community services for many years.

I have a master's degree. I also have post-graduate and other qualifications. I remember going to Centrelink and the first thing they said to me, “We have got a great job for you, cleaning the aisles of Woolworths because that would suit as you don't have to talk to people.”  

Deafness is a part of me, it is part of my identity, but it is not pleasant to be labelled by your hearing. What we can encourage other people to do is to focus on our abilities. We may have better communication skills, we look at people when we talk to them, which is a nice courteous thing to do, but we do it to help us to understand them. It is about focusing on the strength that you get from having a disability.

I have hearing loss but it was caused by Meniere's Disease. I don't walk with a cane, but you won't catch me climbing a ladder or skiing down a slope, or walking in 4 inch heels, or driving a car, for that matter. Descending a set of stairs or descending on an escalator presents a challenge that will require razor sharp focus. How on earth can a person with a balance disorder, like Meniere's Disease, keep the balance in a world  in constant free fall and remain capable in the workforce? Work colleagues may think that sufferers are faking it. It is only when they see you having an attack, curled up on the floor grasping a bucket, that they believe there is something actually wrong. Let them know what you need in the event of an attack. The workplace should have a plan in place to give you the support that you need, and so that your colleagues know what to expect.

There are crucial choices that face you even as individuals working up the ladder in the workforce. There is a glass window - that is the best way of describing hearing loss in the work force. It’s between you, me and my colleagues - the thickness of the window depends on how my hearing or communication goes with the colleagues. Your colleagues don't know whether they are confident for you to be promoted or be part of the work force. People lose faith in you because they see the hearing aids and think, “Well, not too sure he will be great with people, not too sure he can manage people.

I can’t afford new hearing aidsI am a registered nurse and work at a local hospital here in Canberra. I couldn’t hear the patients’ buzzers, would misunderstand what patients were saying, felt uncomfortable taking verbal or oral orders over the telephone for medication and felt I needed to withdraw from direct patient contact because I was at risk of harming someone because I couldn't understand everything that was going on around me.

I can't use cochlear implants because my audiogram is dislocated, and basically the hearing aids do a good job. That's fine for me but, as we all know, they are very expensive. The more power, more grunt, the more expense. It is just one of those expenses for me trying to work. It's like an investment plan. Instead of investing in property, I am actually investing in me - in my hearing aids at the moment, until the day when I get a family where I am sure I will face the same dilemma as many Australians who have to choose between a son or daughter's school trip, and treatment or hearing aids so you can work and participate in society to bring home a wage for your family.

I need communication access for my work so I can communicate with other staff members and my employer. If I plan to be promoted and have a career, I don't want to be sitting in a corner, I want to be an assertive adult and be included.

The Employment Access Fund, EAF, is a double-edged sword. It gives me access, but it does not give me enough access. I need about 10 hours of interpreting service in my workplace each week. I would blow through the EAF funding within about eight weeks. I would want the Australian government to reconsider the way that EAF is structured. Generally speaking, I think that people who are in more senior positions, who attend countless meetings, therefore there is a higher need and high demand for the cost.

I went to a school reunion a few years ago. One of my classmates said to me, "You were really lucky that at school the teachers were very accommodating to you." And another friend interrupted and said, "No, Donna was accommodating to us. Donna turned herself inside out and adapted and adjusted."  I think I can also apply that to the workplace. I have been working for 40 years, and I have continued that habit of being accommodating and adjusting. In doing so, it reminded me that there is a lot of effort involved in that, and I have been lulled into a false sense of security. To succeed in the workplace, from somebody of my generation it has required enormous effort, and enormous drive and ability.

I have to be presentable in my position in a medical office and I also have to be able to communicate with patients on all levels. I pay thousands for my hearing aids, with very little return from my health fund. I cannot afford the really good ones, so I always go for the cheapest, which are often bulky and are easily seen by others.

To improve on the aids I use to hear, the money will have to come out of my mortgage. Looking down the future I am wondering how I am ever going to pay the mortgage off, if it's always up to me to fund expensive technologies which I am grateful for because I can then participate in the work force.

After 20 odd years I was asked to resign. It was felt I was ineffective for management roles as I didn't have telephonic skills, yet I was able to communicate face to face with the team or via email. Why is it so important to be able to use the telephone?Emails can be filed as proof of business activities and audit trail and good management is being 'seen' in person!  My decades of experience, corporate culture and knowledge seem to have little value.

I often meet young families and it is always the mother who misses out. You see, when there is a certain amount of money you pay the rent, you pay your house payment, you organise tucker and look after the kids, shoes, schooling and way down the bottom comes the mother who needs hearing aids and often the Dad.

A person who is hearing impaired looks 'normal' but there is little understanding of the psycho-social challenges hearing impaired people face. It can be very hard to interact in groups and on the telephone and there is an expectation that with hearing aids, a hearing impaired person can operate just as well as a hearing worker. There is little appreciation of the effects of stress and fatigue on hearing impaired workers. This is subtle and only becomes evident with time. It is rarely well managed by the employer in my experience.

My biggest complaint is that the Government does not assist the workers who need or want to work, by assisting us with the cost of hearing aids. But if I didn’t work they would have to pay me a disability pension! So what is the difference? The government must assist workers with a hearing disability to work. Once I retire I will get assistance for hearing aids, why not now, while I am still able to work and be productive?

At my age my hearing aids are not covered by Medicare. It is also not covered by my top of the line very expensive private health insurance, which has covered my son's ankle operation, my husband's knee operation, over the years CAT scans and MRIs and other very expensive medical services, but it won't cover my hearing aids because I am too young. I have to be over 55 before my particular cover will fund it.

I get furious when I hear the ad on TV which has been playing lately someone saying, 'Oh I have this insurance and I don't need hearing aids or hip replacements so I'm happy with my level of cover.' The thing is deafness isn't just about elderly people; it can hit anyone in the community from newborns up to people in their 90s.

Around your family and friends, you are normal, and don’t have to make many accommodations. When you go to university, and out into the world, it is quite a shock. People see you as deaf, not normal, you don't belong here. They can make it difficult for you to go to work, earn an income, to do the things that everybody is entitled to do. This can chip away at your self-worth and bring you down and make you wonder whether there is a place for you in the workforce. For me it has been a tough journey that has taken me a long time to get to the point where I am confident in myself, after my self-esteem took a battering. It took a long time to be able to stand my ground, that I am entitled to a job, I work as hard as everyone else. In the past people have shown me how to stand on my own two feet. This is what I need to do my job, it is my right to be here, I won't go away. It has been an interesting journey but a good journey for me as well. 

One of the perverse outcomes of doing well in the workplace is that your colleagues assume that things are easier than actually are. They do not realise how determined you have to be to overcome obstacles in the workplace. One day, last month, I attended a senior staff meeting. I found a colleague who was sitting with her back to me, muttering. I was bored in the meeting anyway, so I turned away from her and ignored her. About 20 minutes later I realised that the meeting had continued. I tapped the woman on her shoulder and asked her if she could perhaps sit back a bit so that I could see what she was saying. She snapped at me and said, "I don't want to!" Which got the attention of everyone in the room. Finally, my colleague said, "Oh, alright..."  After the meeting, I was very distressed. I raced after this senior colleague, and said that I wanted to speak to her about something. She snapped back, "Oh, what?"  And I said, "I do need to remind you that I am Deaf, and I need to be able to see you to understand what is going on." She rolls her eyes and said "It's not all about you, you know."   And I said that "Actually, it is about me having access to communication in the workplace."  I stepped away from the conversation and I was still quite distressed. Here I am as an older woman who has found her way through schooling and found my way through the world, got a job – it made me wonder who was looking out for the people who are coming after me who will struggle. 

It took me a long time not to be ashamed of my mother's hearing loss or not to be ashamed of mine. I wouldn't wear them for a very long time. Now I am that proud of my cochlear implant and hearing aid which each four years costs me $16,000 let alone batteries every three days until the day I die – I manage. I love it. I can hear a clock tick. Take them off I could not hear a jet engine in this room - it is an absolute necessity for us.

I am Deaf. I use Auslan as my primary mode of communication. I cannot be an independent person unless I have communication access. I always use a NAATI level two or level three interpreter to meet my needs. I use realtime captioning and open captioning on television at the cinema and on DVDs. I use SMS through my mobile. I have flashing lights for my door and fire alarms at the house. I use the National Relay Service to make phone calls with hearing people. For medical situations and for medical reasons when I go to a doctor I must have an interpreter. This is to make sure I am receiving informed information about my health as well as medication needs for my children. If I am given the wrong information I may incorrectly medicate my children. My communications access enables me to be an independent person. Without that I would be far more withdrawn and isolated.

What's your story? 

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