Recently I attended the excellent Deafness Forum Summit in Melbourne. I was particularly interested in the second day where Dr Anthony Hogan and Dr Paul Jacobs spoke about psychosocial issues related to deafness. There were some fascinating facts and ideas put forward. Dr Hogan, for example, spoke about the stressors of deafness. The isolation and the constant struggle to interact causes people who are deaf to become ill more often. In fact, if my memory serves me right, Dr Hogan suggested that the life span of the average person who is deaf is six years less than the general populace. He attributes this to the increased “stress” associated with deafness. Dr Jacobs spoke of “deafness specific” life skills and theories such as the 10 000 hour rule. Put simply Dr Jacobs research found that ‘healthy personality’ in people who are deaf is influenced by the development of certain “deaf specific” skills. These might be using captions in a variety of situations or developing a level of assertiveness to deal with a variety of “deaf specific” circumstances. Mastery of these skills may never be fully achieved but development of “deaf specific” skills is important. The ideas of both Dr Hogan and Dr Jacobs are far more academic than I can explain in this article but to me it was fascinating stuff. I did, after all, develop the Successful Adults in Life Program for Young Deaf People back in 1999 which had a focus on, “Deaf Specific“, life skills. The disability politics in South Australia killed that one stone dead, but that’s another story.
But the quote that stood out for me among all others came from Dr Hogan. He was asked what he thought of the National Disability Insurance Scheme. He was, to put it mildly, extremely sceptical it would have any impact for people who are deaf at all. His rationale was that we are obsessed with equipment and technology and that these things are only a very small part of the equation for providing proper support and access for people who are deaf. Dr Hogan was alluding that we need to have a greater focus on the psychosocial needs as well because in doing so we provide the person who is deaf with a framework to be able to live within and interact with general society. He is right.
I lost my hearing around the age of 8. Firstly I was in the moderate to severe range later to become profound. The doctors and audiologists all suggested hearing aids. I remember endless trips to the Royal Adelaide Children’s Hospital and to the National Acoustics Laboratory for hearing tests. At first my parents were in denial and refused to consider a hearing aid even to the point of getting a second opinion. In the end it was obvious, a hearing aid was needed.
I was fitted with an aid and placated by my parents and the audiologists alike. “The aid is very small” they said, “No one will see it.” They reassured me that it was, “…the same colour of your skin”, that, “You can grow your hair long and no one will see it.” The aim of all this was to put me at ease and to reinforce to me that a hearing aid would not make me different. The reality is that the opposite was true. The very fact that I needed to camouflage my hearing aid reinforced that being deaf needed to be hidden. It was almost as if it was shameful.
But the overall message back then was that the aid was going to FIX me. And that by hearing better my problems would be largely solved. There was no support for me to deal with my anxiety at losing my hearing. There was no advice to me as to what hearing with an aid would be like and how my peers would respond. There was no training in the use of the aid and asserting myself when I did not hear properly. It was just a fitting and away you go.
No one advised my parents as to how to facilitate communication within the family. No one advised them of the frustrations I might encounter. No one provided support to my parents, who must have been going through extreme anxiety at the time.
No one told me that I might develop a certain amount of paranoia. Paranoia that develops simply because you don’t know and can’t hear what is going on around you. “Are they talking about me?”, “Are they Laughing at me?”, “Why are they staring at me?”. It got to a point that on the bus home from school I would go immediately to the back of the bus so that I could see everyone and make sure I was not the centre of the attention.
No one advised that upon losing your hearing you go from popular to also-ran. I was always good at sport and when teams were picked I was one of the first selected. Suddenly no one wanted me. I was picked last. No one advised me how to deal with the inevitable crash to my self-esteem that this would cause.
No one advised me that when I entered adolescence that the focus on body image would make me extremely self-conscious. I didn’t want to wear my hearing aids because it was uncool. Pressure on me from school and parents to wear my aids was intense. I would deliberately lose my hearing aids. “Accidently” drop them down the toilet and even fed them to the dogs.
It got to the stage that I would wag school. I missed 14 days in a row. I would catch the bus to the local shopping centre and sit in the centre toilets reading the newspaper from end to end. Eventually the school rang my parents to find out what was going on, I was sprung! There was no exploration of the reasons for my wagging school or my extreme response to try and avoid wearing hearing aids. I was sent to the deputy principals office and caned.
No one advised me of the change my deafness would bring to my voice. Unable to monitor or hear my voice I would shout. My voice became “deaf”. Of all of this I was unaware. I didn’t understand the snickering of my mainstream school when I addressed the assembly to tell them my soccer team had won six nil and that I had scored five goals. I was mortified.
No one explained to me that I would be self-conscious and unable to approach girls and ask them on dates the same as other guys. I would worry what they would think of me. I would worry of the rejection. Of course my deafness was to blame for all this, “No girl would want a deaf boy”. I withdrew and never went out. When my mates were starting to night-club I was in my safe haven in front of the TV.
No one advised me of the communication strategies that a deaf person might need for communication at work. No one advised me of prejudice that employers might exhibit when I applied for work. No one advised me of the difficulties of accessing university at a time when interpreters and note-takers were not available. No one told me that I would have to get out in front of my university peers and ask for a note taking buddy because the disability liaison officer of the time did not organise it for me as he had promised.
It is a wonder I came out of all of this in one piece. All I got was a hearing aid and I was sent on my way No support. No training in its use. No advice of its limitations. No advice of the personal and psychological challenges that I would have to confront. I received a technology fix and a shove out into the big bad world.
These are some of the stressors that Dr Hogan is talking about. Some of us get through it and become strong and functioning human beings. Others do not and this is why incidence of poor self-esteem and the mental health issues are high amongst people who are deaf. Deafness is not just about hearing, it’s about overcoming and skilling the person who is deaf to deal with the various issues that will arise. It is about supporting families, developing communication strategies and about developing a level of resilience. Most of all it is about navigating the minefield that is deafness which goes far beyond improving hearing.
The NDIS is a wonderful thing but if it supports the deaf and only focuses on the technology fixes it will miss the mark by a long way. We cannot just say provide hearing aids, provide cochlear implants, provide captions or provide interpreters and that will fix it because it will not. Deafness is a social disability, no matter what age it is acquired. If we do not build the psychosocial needs of the deaf into the NDIS then its benefits to the deaf will be limited. This is why we need a deaf expert on the working groups that have been charged with setting up the NDIS. Currently there is not one and it is much needed. Because deafness, it’s complicated, to put it mildly.
**** There is no doubt that there are similar psychosocial issues for other disability groups. What Dr Hogan says about the obsession with, ”fixing”, through technology may have implications for these other groups too. Here is hoping that psychosocial needs get serious consideration in the setup of the NDIS
The Rebuttal 
Gary, I only wish that I had access to this type of document when I first started my own journey in supporting students with disabilities in the university sector. It took me a time to work out the need for the psychosocial support as well as direct support such as Notetaking and Interpreting. Thanks to the many students who spent the time to educate me led to my better understanding of the many varied and complex needs of different disability groups.
The issue of NDIS and the support needs of the many different disability types is at the core of my concerns about the implementation of this system changing approach to disability support. As I have stated before I am most concerned about the possibility of fracturing the current strength of the support by the varied disability groups but really underlying that issue is the need to address the concerns that you raise in this discussion piece – and that is the recognition that disability support is made up of so much more than aides and equipment and the need for a daily shower etc. There are complex issues of the needs of the internal person (that sounds a bit wankie but I do not know another way to capture this idea). Yes there are the more obvious needs but underlying this are the issues of engendering self confidence, assisting an individual in self advocacy skills, assertiveness, methods of interacting with able bodied world. Just those issue that you have raised in this piece about the needs of deaf people. Also the issue of ‘fixing’ an individual with a disability are true to all disability types I believe.
The hard thing is to keep the ‘one voice’ while recognizing the different needs of the diversity of disability types. Is it possible that some or many of the needs of the ‘inner person’ are the same or similar across disability types? Can our expert group identify these real support needs and articulate them? Could we then review these needs as individuals and groups and eventually agree that these supports must be made available to ensure that all people with disabities can maximize their individual potential? Wouldn’t that be good?
I have to say I am concerned that the NDIS will focus on the massive physical needs of a few disability types as these can be so much easier to identify and miss out on the needs of the inner person because they are much harder to articulate. This is really, in my mind, the crux of the issue – can we identify some common support needs across the disability types that can be agreed to by all as being fundimental and basic and that they should come under the preview of the NDIS? I still believe that if we are not very careful we can easily be divided and conquered if it is seen that we each push only for the support needs of our own disability type. I do not for a moment believe that this is your intent or aim but I am keen to keep the idea of a united voice in the forefront of people’s thinking.
Finally, I should know better than to types a long discourse on my iPhone. If any (or all) of my comments make little sense or my spelling (or autocorrect) has garbled any part of this reply, please accept my profound apologies.
Makes complete sense Martyin and thanks for the time to respond to the article. Like you I have no wish to fracture the momentum but believe strongly we must get these issues in early rather than when the NDIS is well developed. Its a long and sensitive slog 😀
Chers mate.
How well you write, Gary. What a good communicator you are. Just shows that the communication barriers can be overcome, though we all have different levels of self-knowledge and other abilities. You are an important advocate. The only fear I have is that by emphasizing that we might get sick more often, we give employers an excuse to exclude us. I expect all disabilities have this consequence because of stress etc, but then, everyone has some degree of disability, as a wise teacher of the deaf once told me. You are opening up our own understanding of our particularly hairy disability. Go on listening to yourself as well as to academics, and keep us informed of your discoveries and understanding.
Thank you Shirley, your praise means a lot…. I guess by bringing issues to the fore we can then explore the solutions. Dr Paul Jacobs is himself deaf and his theories of life skilling that are “deaf specific” are fascinating and relevant … But I am not an academic .. I am a social change agent. I guess we all have our role in the process.
Thank you Shirley. Your praise means a lot. I might not always get it right but if I can raise awareness and create debate hopefully that can be a trigger to positive social change.
Hi Gary, I lost my hearing suddenly, overnight without known cause ten years ago. As you can imagine quite a shock. After all the necessary investigations doctors ruled it to be a genetic condition however I have no known family members who are Deaf. I’m fortunate in many ways as I’m a teacher of the Deaf and already fluent in Auslan and with some knowledge of Deaf culture. However, it isn’t the same by a long stretch to teach and then to become part of the world of the Deaf. My hearing friends would pat me on the back and tell me how easy it must be because I already knew Auslan and some of my Deaf friend would just say ‘welcome to our world’. Neither groups very helpful. Others of course, were more understanding. It’s been a long struggle. I wish I had a dollar for every person who pointed me in the direction of cochlear implant / latest hearing aids to FIX the problem. I’ve had all the tests and with the particular damage to nerves I have a CI won’t help and HA don’t provide much help either although I have the lastest one can buy. It’s not that – it’s the isolation, the lonliness. the communication frustrations, the grieving for the things I miss (music, sounds of children’s laughter, waves, birdsong etc) having to adapt my home, developing peripheral vision. The NDIS might help people like me, but I’m sceptical.