It seems clear that people who are deaf ... struggle continually against the meanings that others impose on their experience, and the way that this separates them from others. They struggle for acknowledgement of the way they see their lives and wish to live them, and aspire to connection?with other people, to share and belong. (David Moorhead. Knowing Who I Am. 1995. 85.)
Nga Tapuwae and Before
I am deaf but, before that part of my life started, I was hearing and worked for many years as a librarian in New Zealand. My first job was in a public library located within a secondary school Nga Tapuwae Secondary College in South Auckland. Its placement was a 1970’s social experiment to see if a public library could work within the grounds of a community college (and the answer was no, it could not). The experience was a great introduction for me to the Maori and Polynesian cultures that I had not previously encountered. Until then, I was wary of both groups, and so it was a revelation to realise that although there were many social problems in the area including low literacy, many of the children and teenagers were bright, talented individuals. They simply did not connect to the Anglo-Saxon reading materials we offered. Years later, my interest in the social dynamics of literacy led to my enrolment in a post-graduate literacy degree in Melbourne. This action may have saved my life because at the end of this course, a minor ailment resulted in a visit to the university doctor who diagnosed me with the life-threatening medical condition, Neurofibromatosis Type 2 (NF 2).
NF2 is a late onset genetic condition in which one’s body grows tumours, always on both hearing nerves, sometimes elsewhere as well. The tumours usually cause deafness and can cause death. I was told I needed to have my tumours removed and would probably become fully deaf as a result. This is how my life as I knew it changed direction and I started the long journey towards becoming deaf.
Diagnosis and Change
Predictably, once diagnosed, friends and colleagues rallied to comfort me. I was told things probably weren’t as bad as they sounded. Helen Keller was mentioned several times as an example of someone who had succeeded despite being deaf and blind. ‘Really,’ my friends asked, ‘how bad can it be? ‘Inside myself however, it couldn’t have been worse. A day later the enormity of it all hit me and I became inconsolable. A friend drove me back to the doctor and she did two things that were to change my life. She referred me to the University’s counselling services where, happily, I was counselled by Elizabeth Hastings who later went on to become Australia’s first Disability Services Commissioner. Secondly, the doctor organised for me to visit the HEAR Service at the Victorian Deaf Society (VDS). Again by happy accident, my friend and I stumbled into the ‘wrong building’ where I ended up meeting John Lovett, who was Deaf and the CEO there, via an interpreter.
When I met John Lovett I was distraught but, unlike other people, he made no attempt to stop me crying. He simply listened carefully until I realised he understood what I was saying and stopped crying myself. He said my fears that I could end up alone and lonely were valid and he suggested the best thing I could do for myself was to join the ‘Deaf community’; a community. I had never heard of. He explained it was made up of people like him who used Australian sign language (Auslan) to communicate. He was so engaging and supportive that this plan sounded fine to me. By the time we finished talking and he walked me over to the HEAR Service, I was so in his thrall that I had enrolled for a Deaf awareness workshop, an Auslan class, and had plans to join the Deaf community. Had I stayed on and learned Auslan, my life may well have followed a different path, but this was not to be at that time.
Becoming Hearing Impaired (HI)
Across at the HEAR service, an alternate view of my potential future was put to me. Instead of moving away from everything familiar and joining the Deaf community, I could learn to lip-read and hopefully use it to stay in the workforce and amongst my hearing friends. I had a cousin and aunt who were late deafened; my cousin in particular was doing well communicating with lip-reading. I discussed this with friends and the idea of staying with the people I already knew sounded far less confronting than joining the Deaf community and so I chose this path.
My surgeon was also optimistic. He was confident he could save some of my hearing. Suddenly learning Auslan seemed superfluous. I phoned John Lovett to explain, and his response was that I should do what suited me, but he asked me to remember one thing: that it was me who decided to leave the Deaf Community, not that the Deaf community had not wanted me. He told me that, if I changed my mind, I could always go back because the door to the Deaf community would always be open and he would be still be there. It would be a decade before I decided that I wanted to go back through that door, and around that time this great man passed away, but I never forgot my promise to remember our conversation. It, and a few other exchanges I had with him in the following years, stayed at the back of my mind, especially as my residual hearing sank over the years, and the prospect of total deafness hung over me.
When I had the surgery, my surgeon’s optimism proved unfounded. He could not save any hearing on my left side and my facial and balance nerves were damaged as well. The hospital then decided not to operate again, and would only attempt to remove the second tumour if it grew and threatened my health again. Consequently, for close to a decade, my life was on hold in many ways. I feared deafness—for me it signalled that my life as I knew it would end and I would be isolated. Every hearing test was a tense time for me as I watched my remaining hearing decline in a slow, relentless downward path on the graph. It was like watching the tide go out knowing it was never going to come in as fully again.
My thinking started to change too. Within a week of my diagnosis I experienced discrimination for the first time. A library school that had offered me a place in its post graduate librarianship course the following year made it clear that they no longer wanted me. In the end it did not matter as I was accepted at another institution but it was my first experience of being treated less favourably in the community and it was a shock.
After the surgery my life settled down again. I found work in public libraries again, rekindled an old relationship and in 1994 had a baby boy. However, living with a hearing loss is hard work. Everything seemed tiring, especially lip-reading. My ears rejected my hearing aid and became itchy and inflamed. I became aware that my continual hearing problems were sometimes seen as a nuisance in work situations. Socialising lost a lot of its appeal so my social world also contracted.
Around this time something else started happening. Outside work, people started expressing admiration for me—words like ‘role model’ and ‘inspiring’ started entering the conversation. Any other time I might have enjoyed it but for me, struggling to adapt to my new situation, it felt odd. The whole thing reminded me of being encouraged to be like Helen Keller; as if there is a right way to behave when one is deaf in which you are an inspiration, and a wrong way in which one is seen as being in need of a role model.
I discussed this with Elizabeth Hastings who had helped me prepare mentally for the surgery and afterwards. I explained I felt vulnerable and needy in my new situation and she gave me some useful advice. She thought feeling needy was a good thing as realising one needs people keeps one humble. She observed that, after years of intellectualising, educated people sometimes started believing they could use intellectualisation as a way to avoid painful emotions such as sadness. This behaviour then cut them off from support and from understanding that none of us can do it alone. She believed that, in always having to ask for help, people with disabilities are kept aware of the simple truth that all people depend on others to survive. She said I could regard becoming deaf as a disability, or I could choose to regard it as a privilege.
Over the years the truth of her words became increasingly more evident to me as I waded through all the jargon and intellectualisation that surrounds discussion of both deafness and the disability arena, compared to the often raw emotion expressed by those on the receiving end of it. At a personal level I have found that talking about emotions helps especially in the face of the ubiquitous ‘positive thinking’ brigade who would have us all believe that successful people do not feel negative emotions regardless of what is happening.
Elizabeth had initially sympathised with my sadness about my impending deafness. One day however she asked why, having expressed positive sentiments both about deaf people and people with disabilities, I was saying I would probably be better off dead than deaf? Up until that conversation I was unaware of the contradictions between what I felt and what I was saying. I came to realise I was living a lie because I did not believe what I was telling myself; namely, that deaf people and people with disabilities are as good as other people. Far from believing this, what I really thought was that being deaf, or having a disability, did lessen one’s worth.
It was an uncomfortable admission, particularly sharing it with someone sitting in a wheelchair, and especially as up until then I had always seen myself as a liberal thinker. Now, faced with the reality of becoming deaf, I had been hoist by my own petard, as I could not come to terms with the idea of myself as a deaf person. The Christian idea of looking after the ‘less fortunate’ was one I had been exposed to, but I had not realised the flip side of it, which is that the ‘less fortunate’ are also perceived as a ‘burden’ for those looking after them. It reminded me of my initial experiences years earlier at Nga Tapuwae when I came face to face with cultures I thought I had understood but did not. In both cases it was only when I got to know people that I began to question my own attitudes and assumptions and broadened my thinking.
Unfortunately for deaf people, and people with disabilities, I have not been the only person lying to myself. These days it is not common for people to express their fears about deaf people or people with disabilities. People just press on without fully communicating or understanding the other person’s attitude or perspectives. When things then do not work out, these failures reinforce the misconceptions and these attitudes persist. I believe it is one of the main reasons why true community inclusion for deaf and people with disabilities is moving so slowly.
Paying for access is another manifestation of this. Everyone is supportive of access in principle but there is continuous complaint about paying for things such as interpreting. The never-ending discussions between deaf people and the wealthy movie industry about providing more than token access to captioned cinema demonstrate that the inclusion lie is alive and well. Until it can be effectively addressed through genuine dialogue, deaf people, hard of hearing people and people with disabilities will always be largely relegated to life outside the mainstream. Collectively we will also continue to have to endure this double message that we are of equal value to the community while simultaneously being considered a financial burden if we try to access it in ways that are meaningful to us.
In 2002 however all this thinking still lay ahead of me. I still had some hearing and was back living in New Zealand to be close to my family. My relationship had ended and I was a solo mother. My workplace had approved leave of absence, and so I still had my job to go back to in Melbourne if I wanted it. However, I suspected that I would soon need the second tumour removed because I was getting shooting pains down my face.
When my fears were confirmed I could not decide whether to move back to Melbourne or let the job go, and risk having trouble finding one if I went back later. I initially chose to stay longer as my father was sick but eventually I decided Melbourne was where I wanted to be especially if I was deaf. I returned, found temporary employment, and right up to the second surgery I was able to work as I could make good use of the small amount of hearing I still had. I thought that I would still be able to cope when I was made fully deaf as a result of the surgery. It was, after all, only one notch down on the audiogram and I was already ‘profoundly deaf’ and still working.
When I woke up after the surgery completely deaf, it felt anti-climactic. The world seemed exactly the same, just silent. At home where I was surrounded by my close family and friends everything initially seemed possible. However, when my family left, it was just my seven-year-old son and myself again, and on venturing back into the community, it quickly became clear to me that at some level my status had changed. Without any cues, I struggled to follow speech and few people wanted to write things down. Although my son was only seven, people communicated with him in preference to me. I felt as if we had changed roles: I was now the child and he was the adult.
Worse was soon to follow when I tried to re-enter the workforce. When I had the surgery, the hospital had installed a gadget called an auditory brainstem implant, (ABI) which they said would help me hear. An ABI is similar to a cochlear implant but it is attached to the brainstem instead of the cochlear nerve. My cochlear nerve was removed. I hoped my ABI would enable me to hear enough to find work but, aside from clinical conditions in which there was no background noise and the staff knew how to assist, it did not work.
My most humiliating moment with it came when it broke down mid job interview and I spent half the time left trying to get it going again in full view of the embarrassed interview panel, and the other half trying to maintain my composure whilst trying to lip-read the questions. The most crushing blow came from the library where I had happily worked for seven years at middle management level. This library was collaborating with another institution to set up a new library and they needed new staff. I hopefully applied for a job at the same level I had worked at prior to becoming deaf but was unsuccessful. When I asked for feedback, I was told that I was not seen as having the skills to work at that level.
My lowest point came when I was refused a job unpacking boxes of books. I was told I did not have experience in this area even though, as any librarian will attest, unpacking boxes is part of any librarian’s work. When I could not find unskilled work, it occurred to me that possibly I would never work again. While this was unfolding, my young son and I went from being comfortable financially to impoverished. My ex-partner also decided he would now make childcare arrangements directly with my son as he was annoyed at being expected to write things down for me. My relationship with him, some family members, and my friends were all under strain at that time. I was lost.
It also became clear that my son was not coping. Although he knew the rudiments of Auslan, it was not enough for us to communicate sufficiently. His behaviour at school deteriorated and one night he became so frustrated trying to talk to me that he started to pull out his own hair. I calmed him and asked him to write down for me what he was feeling and he wrote down ‘It is like you died. It is like I don’t have a Mum now’. It was now clear to me that although I still had my friends, nobody including myself knew what to do. I realised I had to find someone who could understand my situation and I knew now it had to be a Deaf person.
Fortunately, by this stage I was back learning Auslan again at La Trobe University. The week after the conversation with my son, I told my Auslan teacher what had happened. To my relief she understood my situation immediately. She told me to bring my son to class, at no cost, and she would teach him herself. I did and my life started to turn around. My son took to Auslan with such speed and application that he was able to not only converse with her in one month but immediately started using Auslan with me at home to get the things he wanted. We were able to re-establish the mother/son relationship that we both needed. I was also able to help my son talk through and deal with all the changes that me becoming deaf had foisted upon him. He still uses Auslan to talk to me and supplements it using speech, copious finger spelling, notes and diagrams. More than anything else, this relationship has kept me anchored to my long-term goal of becoming a clear signer.
Encouraged by my son’s success, I put all my energy into learning Auslan and enrolled in a full time TAFE Auslan course. I also joined a chat group called ‘Here to Hear’ (H2H). The perspectives in the group ranged from strongly oral to strongly Deaf but for me, trying to find a place to fit in any of it, it was invaluable. Almost daily I chatted with the group, asking questions and invariably someone responded. The group acted as a safety net and sounding board for me as I worked out the practicalities of living life deaf. The day of my fateful interview and the ABI humiliation, I came home so shaken that I used the Irish remedy of a couple of swigs of whisky, and then went online and posted an account of it all. I can still remember the collective indignation of the group and, as I read the responses, beginning to see the funny side of it . . . something I could not have done alone.
I also made use of easy access to Deaf teachers at TAFE and used that to listen to them and ask advice on situations. I found out for example, that if I instructed my son to stand behind me when people in shops insisted on addressing him, they had no alternative but to talk to me; it was a good clear message to all concerned that my son was the child in this relationship. About this time, I discovered the Disability Discrimination Act (DDA) that Elizabeth Hastings had worked so hard on, filed my first DDA complaint, and received my first apology at the mediation session that followed. My personal life also improved, relationship by relationship as everyone adjusted. Slowly the ice melted in most of my relationships; some relationships faded and were replaced with new ones with signing people, and eventually hearing people again. My life moved forward.
Through a member of ‘Here to Hear’, I was invited to apply for my first post deaf job—covering holiday leave at a Deaf sports organisation. I practically finger-spelt my way through the interview but not only did they offer me the job, they were delighted to have me. I was able to buy a few things with the money I earned, and suddenly it felt as if everything was possible again. This acceptance of me by Deaf people had a profound impact on me. I mixed with people more, and it was not too long before I was able to use my basic signing skills to use Auslan interpreters and re-enter the workplace.
I have discovered over time that living in silence also has advantages—no more noisy parties or rubbish trucks clanging at dawn and in its place a vastly heightened visual awareness that I enjoy. Before I was deaf I thought it would be lonely in the silence but in fact many of life’s best moments—watching rain hit and then run down a window, swimming in the sea, cooking and being with good friends—do not rely upon sound at all; they feel the same way they always did.
Sometimes I have felt somewhat of an outsider in the Deaf community. I have sometimes been taken aback by people’s abruptness but I have learned over time that being succinct is valued in Auslan, and some people like to come straight to the point. At crisis points, such as when I asked for help at the Victorian Deaf Society and my Auslan class, it has been a huge relief to talk to Deaf people and know immediately that they understand just from reading their eyes.
Having access to an additional world of deaf people has made my life more enjoyable. I feel privileged to be associated with the Deaf community. I can recall a couple of Christmases ago making dinner for some signing friends and suddenly realising that, without noticing, everything had become alright in my world again. Everyone was signing really fast – something I still struggle with; but every now and then someone would stop and summarise so I felt included. It was really relaxed and simply felt like old times, just old times without the sound thrown in.
Le Page and Tabouret-Keller, two ethnographers, have this to say about why people communicate the ways they do:
The individual ... creates for himself the patterns of his linguistic behaviour so as to resemble those of the group or groups with which from time to time he wishes to be identified, or so as to be unlike those from whom he wishes to be distinguished ... . We see speech acts as acts of projection; the speaker is projecting his inner universe, implicitly with the invitation to others to share it ... he is seeking to reinforce his models of the world, and hopes for solidarity from those with whom he wishes to identify. (181)
This quote neatly sums up why I choose to communicate the ways I do. I use Auslan and speech in different situations because I am connected to people in both groups and I want them in my life. I do not feel hugely different from anyone these days. If it is accepted that I have as much to contribute to the community as anyone else, becoming deaf has also meant for me that I expect to see other people treated well and accepted. For me that means contributing my time and thoughts, and advocating. It also means expecting a good level of access to interpreters, to some thought provoking captioned movies in English, and affordable assistive technologies so I can participate. I see this right to participate and engage in genuine dialogue with the rest of the community as central to the aspirations and identity of us all, regardless of who we are or where others think we belong.
Le Page, R.B., and Andree Tabouret-Keller. Acts of Identity: Creole-Based Approaches to Language and Ethnicity. London: Cambridge University Press, 1985.
Moorhead, D. “Knowing Who I Am.” In S. Gregory, ed., Deaf Futures Revisited. Block 3, Unit 10, D251 Issues in Deafness. Open University, 1995.