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“The Stress Involved in Keeping Up is Under Publicized:” An Interview with Christine Hunter from SHHH

“The Stress Involved in Keeping Up is Under Publicized:” An Interview with Christine Hunter from SHHH

Thu Feb 08, 2018 02:18 PMBy Jeanette Blom

Christine Hunter is the president of patient advocacy group SHHH in Australia. At Ida’s recent seminar, “The Hearing Journey: What Matters to You?” Christine was able to offer a unique perspective as both a patient advocate and a person with hearing loss herself. We asked Christine to share her experiences growing up with hearing loss, her motivation for using hearing aids, and how she has managed both personal and professional communication experiences.

When and how did you first discover you had a hearing loss?

As far as I understand I was born with normal hearing which enabled me to develop pretty good language skills in early childhood. Apparently, my hearing loss was discovered after a bout of measles at around the age of four or five. I remember undertaking many hearing tests as I grew up, which mainly involved putting pegs in various holes as I heard the various sound tones. I was also under the care of a fairly prominent ear, nose and throat (ENT) specialist until well into my teens. His advice was that hearing aids would be of no help to my sensorineural hearing loss.

How has hearing loss affected your life?

I don’t think that I was too affected by the knowledge of my hearing loss as I grew up. It began as a mild loss and the lifestyle impact didn’t seem very significant. However, I do remember having to always sit at the front of the class at school and I didn’t ‘catch on’ as quickly as my peers. Consequently, I was given extra tutoring in Mathematics and English from about mid-primary to high school. In retrospect, I think this was a good move by my parents to support what I was more than likely missing in the classroom.

Socially and particularly in my teens, I became personally more conscious of not making an issue of the fact that I missed a few things such as the punch line of jokes, was hopeless at hearing whispers passed from friends, and did not want to be seen as different from my peers. I certainly did not want to be seen as requiring special treatment or to be singled out. I don’t recall ever considering hearing loss as a barrier to anything that I wanted to try.

How did your family react to your hearing loss?

I don’t recall ever thinking about how my family felt about my hearing loss. My mother had a small loss herself and scattered on her side of the family were a few close relatives with a similar condition. On reflection, there may well have been a predisposition for my acquired hearing loss that was going to happen anyway. Maybe the viral illness was the trigger.

I am an only child so there were no siblings that were affected. My parents did as much as they could to ensure that I had the same opportunities that were available to most other children, and as far as they knew I was receiving the best advice and medical care for a mild hearing loss, which was never really considered to be an issue or an obstacle.

After completing my Higher School Certificate (HSC) in 1967, I was awarded a scholarship to study teaching at the Sydney Teachers’ College. To be a teacher had been my absolute dream, so I was pretty happy to receive the scholarship and to begin a three year course of study the following year.

Towards the end the first year of studies, my hearing loss was picked up on by a lecturer and, after a series of hearing tests and interviews, my scholarship was withdrawn. I was considered to be unfit for teaching and in the words of the Dean of the College, I would be “a danger to children” if I was allowed to teach with a hearing loss. I was then fitted with one hearing aid under a government scheme which I felt was an abominable instrument, and which I subsequently refused to wear due to its bulk and sound distortion. I considered that I could manage better without it.

It was suggested that I should undertake work in a library where it was “a quiet environment” and where a hearing loss wouldn’t be “too much of a problem.” I have long since wondered just how well this would have played out had I pursued this option. I have always been a people person, and the idea of being isolated and not communicating with others has never resonated well with me.

Over the next few years I worked mainly in office clerical roles and did not pursue further study. During this time, I had a normal social life, met my future husband, married in 1972, and had three children between 1974 and 1979.

When did you get your first hearing aids and what motivated you?

When my children were very young I still thought I was doing okay with my hearing loss. My husband had been always aware of it but it didn’t seem to be a big issue or really affect our relationship, and between us we managed. He would be the first to hear our infant children if they cried out at night and would nudge me so I could attend to them if necessary for feeding. I remember that at times I couldn’t hear them breathing when they slept so I would feel for their breath to make sure they were all right.

I didn’t notice that I was apparently withdrawing more and more from conversations in social settings; evidently my mother-in-law did. Over the course of a couple of years, she asked several times if I would consider a hearing aid and I told her that I had been advised by my medical specialist that hearing aids wouldn’t help. The hearing aid I had briefly a few years before hadn’t been a success and I thought that was further proof. She continued to persist and finally I agreed to try one, particularly as she offered to help fund it.

How did getting hearing aids affect your life?

That one hearing aid I was subsequently prescribed was like a light coming on!

I could hear sounds that I hadn’t heard before such as the birds tweeting in the trees around our home, leaves rustling and my children’s breathing. I felt I was able to be more part of group conversations, and for the first time I realized what I had been missing.

That one hearing aid also provided me with the confidence to undertake a casual night course of study over the next couple of years – designed initially to get me out of the house and to get over my baby brain. This led me to begin a more formal course on a part-time basis at a Technical and Further Education College (TAFE). Three years later, I graduated with an Honours Certification.

The teaching bug was still alive, and anti-discrimination laws which had not existed before were now in force. This meant that a hearing loss could no longer be classed as a barrier as it had been in my first foray at Teachers College. Inspired by the fact that I had managed at TAFE, I applied for admission to Sydney University, was accepted and embarked on a full time four-year teaching degree.

I have to say that it was challenging as well as rigorous, but I had full support from my husband and family and we managed to make it work. I was also fortunate to team up with a group of other mature age students who had begun the course at the same time and we supported each other throughout those years. One had been a stenographer and her shorthand skills came in pretty handy in some lectures, particularly if I missed hearing a few things. We are all still really good friends 30 years later!

After four years, I graduated with a teaching degree with distinction and I began teaching in high school soon after. A few years later and while still teaching I completed my Masters of Education Degree. I taught high school students for 22 years and served as Head of Faculty for seven years before I retired. During the course of my teaching career, my hearing began to deteriorate to the point where I needed to have two hearing aids fitted and, over time, each new set of hearing aids needed to be a bit more powerful as my hearing was − and still is − deteriorating.

For many years, I was under the care of an audiologist who, although an excellent clinician, was also rather autocratic in terms of what hearing aids I should and should not have, and I felt at the time that I could not ask too many questions! But I was sad to see her retire and it took around three years to finally locate an audiologist who I felt was on the same wavelength as me, one that I could really talk to about my hearing loss. To this day, I hope my current audiologist Rosanna never retires as she is fabulous.

As a teacher, I felt that I coped pretty well in the classroom as was confirmed by many colleagues over the years. One of my management strategies was to tell my students at the beginning of each new year about my hearing loss and stress that we had to deal with our “communication problem” as a group. I would suggest ways that could assist us, such as speaking to me so I could see their faces, rephrasing comments if necessary, etc. Mostly it worked, but of course there were always a few hiccups here and there.

The relationship with my work colleagues was pretty good too. I never advertised the fact that I had a hearing loss because my hearing aids worked so well and I didn’t really feel any different from the others. My main problem was staff or curriculum meetings, which were always held in large open-plan spaces where I couldn’t always see who or where the speaker was. I never wanted to make an issue of the difficulty that I had, so didn’t pursue it. I know that I sometimes gave the wrong answer to the wrong questions and usually missed the punch line of jokes, and a few staff members probably thought I was a bit slow picking up on points at times. In hindsight, I wish that I had been more assertive about my hearing loss, and that I had had the courage to ask for a microphone to be used in meetings for instance, or a volume control on my work phone.

Do you have any advice that you would like to share?

My first piece of advice would be to take note of what others might be noticing or are trying to suggest in relation to your hearing loss. Don’t resist. It doesn’t hurt to have a hearing test and the result may surprise you and potentially lead to many doors opening.

I shudder to think how different my life journey might have been without the intervention and persistence of my mother-in-law and the support from my family in relation to getting that first “real” hearing aid – and being able to again pursue my dream of becoming a teacher. I am forever indebted.

My second piece of advice would be to be more assertive in relation to your hearing loss. Ask for device assistance if needed and let others know how they can help with better communication strategies. It benefits both sides.

I have learned a lot, particularly since I have been more involved in SHHH. Reflecting on my hearing journey, I think I might have made life a lot easier for myself if, particularly in my teaching role, I had been better at acknowledging my hearing loss instead of continuously trying to keep up as if nothing was wrong. The personal stress involved in keeping up and trying to be “good enough,” particularly without assistive devices, is significant and very much under-publicized. I think I really made life hard for myself.

Why did you get involved with SHHH and how does SHHH work to support people with hearing loss?

I originally became involved with SHHH as a volunteer around 1984, not long after I had received my first proper hearing aid. At that time, the organization was in its infancy and I had been referred to it by a local hospital audiologist.

SHHH was founded by Mary Sparke who herself was hearing impaired. She felt that more help was needed other than lip reading and hearing aids. SHHH stands for Self Help for Hard of Hearing and, as the name suggests, the aim of the organization is to assist those with hearing loss to make informed decisions about their own best alternatives for hearing management. Over the years, it has grown to include a wider range of activities and services, including advocacy and educational activities, both for people with hearing loss and their families and on a community level. We represent the interests of people with hearing loss in the public domain and work to support the welfare and integration of people with hearing loss in society. We encourage and participate in scientific research into hearing loss and allied technology, and we manage a “hearing aid bank” in collaboration with Macquarie University in Sydney to assist those who are disadvantaged.

When I embarked on my university studies, I had to reprioritize my time and was unable to continue with SHHH for some years. After retiring, I joined the organization again and this allowed me to expand my knowledge of hearing loss, the various ways that it is caused and manifests, and especially the effects of it being not addressed. I also became increasingly aware of how the widespread retail focus of many hearing services has left many with hearing loss very disappointed, financially drained and feeling that there is little help available, when in fact better outcomes could be achieved with a different approach. This caused me to reflect more on my own hearing journey and how I had dealt with it or not, particularly during my years of teaching.

In 2016, I became President of SHHH. One of my roles is to be an outreach speaker, which involves giving presentations about hearing loss and its management to various groups such as service and social clubs, retirement groups, etc. At each presentation, I am continually amazed at just how widespread hearing loss is. There are so many people who either know someone who has hearing loss or they have it themselves and ignore it, possibly due to the stigma or through learning of someone else’s bad experience, and just put it into the “too hard basket.” To my mind continued public education and awareness raising of hearing loss, and of the importance of patient-centered rehabilitative services, is vital.

As President of SHHH, I have recently had the opportunity to collaborate with people from other hearing health organizations to promote the goals of hearing help and the power and value of patient-centeredness, both on community and government levels. I feel excited about the possibilities that could evolve from a more holistic approach to hearing rehabilitation at all levels of patient care.

Comments

    Your article was a pleasure to read Christine. Thank you for sharing your story and for being involved in SHHH. My story mirrors yours in so many ways. Being told that hearing aids would not help me by trusted professionals was a huge set back. It wasn't until I discovered SHHH in the United States that my life began to change. Like you, I likely had hearing loss as a child, but it was mild. I did fine in school, but missed a lot. I was satisfied being a B student when I probably should have been an A student. I had no idea my hearing acuity was falling until I was in my third year of college. I earned my teaching degree and taught for several years before my loss became a barrier. I retired in my 30s. A few years later I discovered SHHH and became involved ultimately serving as president of the national board in the mid 90s. Through SHHH I learned about assistive technology that allowed me to return to college for a master's degree and go back to teaching. I often wonder where I'd be today had I not become involved and interested in learning all I could about how to help myself. I remember meeting Mary Sparke at one of the early national SHHH conventions, along with a few others from Australia. It was cool to know there was a 'sister organization' out there.

     

    In 2005, I received a cochlear implant. It also was a life changer. I am now retired, but still involved with SHHH, which I'm sure you know changed its name to The Hearing Loss Association of America (HLAA). I still miss the name SHHH as it signified what made such a change in my life; self help and a willingness to learn from others who understood hearing loss from a personal perspective. Those who 'have it'; 'get it'!

     

    Again, thank you for sharing your story. I hope you might travel to the USA someday to attend an HLAA convention. after 33 years, I am still learning and feeling blessed to have been a part of the movement to make hearing loss an issue of concern. Still a long way to go.

     

    Best to you,

     

    Julie Olson

    Appleton Wisconsin

    USA

    Thu Feb 08, 2018 07:58 PMBy Julia Olson

    Thank you for your kind comments and "getting" my story Julie. I am struck by how similar our paths appear to have been and I am pleased to learn that you have had such success with the help of the great technology that has become available over the years.

    We have a long way to go in Australia in relation to there being a widespread recognition and understanding of hearing loss and its ramifications. However, I am hopeful that we are on the cusp of change. I would very much like to attend a HLAA Convention and have it on my list of "must do's".

     

    Warm regards,

    Christine

    Sydney, Australia

    Wed Feb 14, 2018 11:57 AMBy Christine Hunter