In 1978 I gave up. I had struggled with my hearing loss in a mainstream school for four years. Academically my results were rock bottom. Psychologically I was a mess. My self esteem was shot. It all came to head when I was caught wagging school. I had not been to school for two weeks. What I would do is catch the bus to school and head off to the shopping centre. There I would remain until home-time. I would not be able to this today. Kids only have to have a day off and the schools are on the phone to find out where they are.
I came home one day after touring the shopping centre to be confronted by my mother. “How was school?” she asked. I lied and said it was fine. “Is that right?”, queried my mother, “Then why did the school call me at work to tell me they had not seen you at school for two weeks?” The cat was out of the bag.
I basically broke down and confessed that I was not coping. I told my parents I needed to go to a deaf school. At that time I thought deaf schools were like an institution. Recently I had seen the movie on Helen Keller, The Miracle Worker, I had visions of rat infested old buildings and cruel superintendents. I imagined I would be like Oliver in Oliver Twist, begging for more food.
This was the catalyst for me to become enrolled at school that supported the “Hearing Impaired”. This was a mainstream school with a unit within it that provided support for students with a hearing loss. Believe it or not, after four years with a hearing loss, attending this school was the first time I had ever met another person, young or otherwise, who had a hearing loss.
I was immediately fascinated. Deaf kids at the school actually signed. Initially I would sit on the steps and watch them. Gradually I introduced myself and began to learn finger spelling. Some were more oral and I naturally tended to mix with them because I could communicate with them. But as my signing became, “better”, I began to talk to some of the, “others”.
It must have been painful for them. I probably finger spelled 80% of what I said. What I signed was a cumbersome form of signs in English and sloppy finger spelling. (My finger spelling has not improved to this day.) But I was persistent. I would try to tell them jokes. They all looked at me as if I was some maniac. Nearly all my jokes involved word plays and puns. Of course for the majority of these deaf kids such word plays were meaningless.
I noted with interest that many of the students appeared to have literacy issues. They wrote in a strange sort of broken English. While it made sense, the grammar was all over the shop. The spelling was terrible. The level of written discussion was very basic and child-like. This made no sense to me at all. These kids were deaf, not intellectually disabled. It puzzled me as to why they had such poor literacy.
This was perhaps my first introduction to members of the Deaf community. As I became older I began to attend the Deaf club on Friday nights at the wonderful old 262 building in Adelaide. One of my earliest memories of the Deaf club was attending a youth group function. We met outside of 262 and caught the bus up to Monash Adult Playground on the Murray River. I had just turned 18. I remember sneaking off and having a beer at the pub over the road. Coming home and snogging with some cute young deaf girl at the back of the bus made it a trip to remember.
In those early days I met many wonderful Deaf people who have remained friends to this day but I was always struck at the diversity within the community. There were some deaf people that were very bright and I naturally struck up a rapport with these people. I remember the first night I attended the Deaf club. I was surrounded by Deaf people firing any number of questions at me. “When Deaf you?” – “Deaf you how?” – “School where?” –“Family Deaf or hearing?” This inquisition was perhaps my first introduction to Deaf culture. I learnt that when a deaf person comes to the Deaf community for the first time establishing the origins of the deafness and association with the Deaf community was par for the course. From Australia to England to Denmark the inquisition has been the same for me the world over.
But always I was struck by the diversity. There were the well adjusted “Deaf” people and there were the “Deaf” who were linguistically challenged. Then of course there were the Deaf who were linguistically proficient in sign language but who had only rudimentary English literacy. This always fascinated me. What was the cause of such linguistic diversity? Why was the spectrum of human development among the community so different? I wanted to know.
There were those that were severely deaf, those that were profoundly deaf. There were those that were oral and who would have their ‘oral’ conversations in the corner. There were those that were fiercely proud of their Deafness who spoke of history and culture and oppression of sign language. There were the sports groups that brought everyone together regardless of linguistic ability. If you could bowl or hit the ball to the boundary with frequency you were in the cricket team. No one cared if you couldn’t structure an English sentence or linguistically you were performing the same as a 9 year old.
BUT it all fascinated me. I wanted to understand why linguistically and intellectually there were such extreme differences among the Deaf community. I read on the subject voraciously. I remember watching a very early video on Deaf history that had been made by Paddy Ladd in England.
The video told the story of deaf education. It told of the French educator Siccard, of Clerc and Gallaudet. It told of how in the past sign language had been embraced as a means of education and as a result there had been deaf lawyers, teachers, doctors and the like. It told of Milan in the 1880’s where educators of the deaf decided that sign language was out and oralism was in. It told of how this oppression almost led to the destruction of sign language and the Deaf community. It told of how ‘oralist’ would wheel out their ‘success’ stories while keeping the ones who oralism had failed, (of which there were many), behind closed doors. It explained how as a result the education and development of deaf kids was severely impacted. I was appalled.
I read When the Mind Hears by Harlan Lane. As an academic Lane is oft criticised for being biased but he told an eloquent and harrowing story of oppression and how this impacted on a generation of deaf kids. I learnt very quickly that Deaf adults who had Deaf parents were generally better adapted and linguistically superior. I learnt that deaf kids given access to sign language and good sign language models earlier were better adapted and performed better academically. I learnt about age and onset of deafness and how this impacted or assisted with linguistic development. I learnt how parents and professionals persisted with oralism, even when it was clear it was failing the child. Nothing hit home to me more than reading Oliver Sacks book, Seeing Voices, where he described deafness as a preventable form of intellectual disability. Slowly I began to understand why there was such linguistic and developmental diversity among the Deaf community. The oppression of sign language and the inability of professionals to see the wood for the trees was leading to a generation of ‘Intellectually limited” deaf people that was, for the most part, entirely avoidable.
And then came the cochlear implant. In the early days of the cochlear implant the Deaf community was vocal in its objection. This was entirely understandable. The Deaf community had been subject to any number of failed experiments. Oralism had failed many. Cued speech was cumbersome and clumsy form of communication. Signed English was an appalling failed experiment. The Deaf community had seen it all before. Attempts to make them ‘hearing’ had failed. The Cochlear Implant was another attempt and they were having none of it.
Predictably early responses to the cochlear implant from the Deaf community were emotional even violent. The Deaf community were particularly vocal about early implantation calling it child abuse. According to the Deaf community it was the child’s right to decide. The child should not have an invasive cochlear implant imposed on them.
I remember one well known advocate being interviewed on TV for one of the morning shows. The advocate had apparently come upon evidence that the cochlear implant had led to paralysis of some deaf recipients. In the ensuing confusion the Deaf community thought that some unfortunate recipient had become wheelchair bound. What had actually occurred is that the cochlear implant, in a few cases, had led to facial paralysis owing to a nerve being damaged in the operation.
Ironically the cochlear implant has become the face of the new Deaf community. It is probably fair to say that many in the Deaf community saw the cochlear implant as a threat. For them the cochlear implant was going to make potential members of the Deaf community ‘hearing’ and as a result, over time, the numbers coming into the Deaf community would reduce. This would gradually lead to the death of the Deaf community. From my observation this has not been the case.
Young people with cochlear implants appear to still be seeking out the Deaf community. The cochlear implant is an amazing piece of technology but it does not cure deafness. While it appears to assist the recipient when the communication environment is ideal it has its limitations. Large groups and noisy backgrounds still present problems. Individuals with cochlear implants still experience the same issues as deaf people of the past. In large groups they are isolated, communication is difficult and conversation hard work.
What this means is that many young people with cochlear implants seek out other deaf people and this ultimately leads them to the Deaf community. Often it is sport that brings them together. At the recent Australian Deaf Games in Geelong it was almost as if every other participant had a cochlear implant.
Recently I attended the Deafness Forum Summit in Melbourne. Now Deafness Forum are hardly a bastion of the Deaf community. However, there were a large number of young people who had cochlear implants who attended. In between sessions you would notice them all gathering to talk. Some spoke and some signed but still, even with cochlear implants, deaf people sought each other out.
Rather than become a threat to the existence of the Deaf community it could be argued that young deaf people with cochlear implants have changed the make up of the Deaf community. These young Deaf people are different from those first Deaf people that I met all those years ago. My observation is, and lots of people are not going to like this, that they are linguistically superior to many Deaf people I met when I first entered the Deaf community..
To me it is undeniable that the cochlear implant is far superior to simple aided hearing. From what I am observing, young deaf people implanted earlier are developing much better spoken language than in the past when I first entered the Deaf community. Consequently they have better literacy and are performing better academically. I have no research to back this. It is purely observation from having met many of these young people professionally and through the Deaf community.
But still the cochlear implant can not overcome all the barriers to social participation. Still these young people seek out other deaf people to share like experiences and for ease of communication. While I am sure the cochlear implant helps in many ‘hearing’ social situations young deaf people with implants are, increasingly, becoming members of the Deaf community. The difference now is that many of these young people have normal language development, normal literacy and are very savvy of their needs. The diversity of linguistic and intellectual development that I first noticed when I entered the Deaf community has now narrowed. One might argue that it is now almost non-existent among the younger generation.
With this change has come a change in values. Recently, for example, there was a Facebook debate about the relevance of Deaf Australia today. Deaf Australia is, of course, the advocacy organisation that represents Auslan users. Increasingly Auslan users are becoming people with cochlear implants who have learnt Auslan as their second language. What this means is that their needs are different. While many of them will chose to access Auslan Interpreters for study or work others appear to prefer communication support through Live Remote Captioning. There are indications that many prefer English structure for their communication support. Technically though, because these people are members of the Deaf community and use Auslan, they are represented by Deaf Australia.
This group of Auslan users also have technological needs. They need maintenance on their implants. They need batteries for their implants. Some need implant upgrades and rehabilitation. Perceivably there are some young kids with implants whose parents have decided that Auslan is beneficial to their linguistic development that require early intervention. Perhaps in the future this will be provided by the NDIS.
In the past Deaf Australia simply represented mostly Auslan, interpreters, telecommunications and captioning. The question is; Have Deaf Australia moved with the times to meet the needs of this new young group of people entering the Deaf community who require representation on a variety of fronts including technology? It’s easy to say that is Deafness Forums role. But is it? Particularly given that this new breed of Deaf community members are “Auslan Users”
Indeed we have a situation where Deaf adults who have been brought up in the Deaf community have decided to have a cochlear implant later in life. The reasons are varied. Some do it for professional reasons, others so that they can hear their kids and some do it simply because they want access to sound. Deaf adults are having Deaf kids and deciding to provide these kids with implants so that they have the best of both worlds. The Deaf community has changed forever.
Like it or not the cochlear implant is now part of the every day issues relating to the Deaf community. The question we need to ask is whether our representatives at Deaf Australia have kept track with the change. Are the issues that they represent relevant to this new breed of deaf Auslan users with cochlear implants. The times they are a changing and perhaps the time has come to change with them.