I am having a love hate relationship with Deafness forum at the moment. I get it that they have a broad mandate. I get it that they have to promote hearing health and hearing loss prevention. I know losing your hearing is fucked. It’s hard work. I wouldn’t wish it on anyone. Ok, let’s do our best for those that can hear and assist them to continue that way because adapting to deafness at a later age is horrible. It is isolating and soul destroying.
BUT that does not give Deafness Forum and excuse to turn every single person with a hearing loss into a sad sack. It does not give Deafness forum an excuse to promote hearing as the utimate and only way. It does not give them and excuse to turn people with a hearing loss into lesser beings who can only be complete if they hear!
Remember Prawngate? People may well remember that a hearing aid company advertised tiny hearing aids. They had a photo of a deaf person wearing two prawns behind their ears. You know big ugly things. My wife was so traumatised she could not wear her aids for a year. She has a phobia of prawns you see. Yes, I jest.
The point is that the advertisement painted deafness in a negative light. It depicited deafness as something that needed to be hidden. In doing so it belittles all deaf people. Rightfully the Deaf Community erupted. The company concerned immediately removed the advertisements and apologised.
The Royal Institute of Deaf and Blind Children did something similar when it had a fundraising campaign depiciting deafblindness with a teddy bear with no ears and no eyes. Likewise they removed the ofending ads when the Deaf community erupted and also apologised.
In the space of two weeks Deafness Forum have shown nothing but rank audism. First they published one of those inspiration porn videos of tearful parents at Cochlear Implant switch on time – ” Johnny hears I love you for the first time.” type video. We all know what misleading and damaging twaddle this is. Then, inexplicitally, they published a video asking us all if we could hear and identify the different bird calls in the video and finally they had this. Click on the picture to read.
What is wrong with this article? Well, once again it depicits deafness in a negative light. It belittles deafness. Says Ita, “My father was so stubborn about his hearing loss. We’d have conversations where I’d say something like, ‘The sun’s out’, and he’d say, ‘Yes, I missed the bus’”
And yet again it paints deafness as something that is embarrassing and needs to be hidden – “We are an ageing population and the hearing aids nowadays are so small and so much better..” The worst thing about the latter comment is that it makes deafness out to be just about getting old – of course it is not and deafness can be found in all age groups.
Now I know Ita meant well. My issue is not with her. My issue is with Deafness Forum sharing this article. As an advocacy organisation Deafness Forum need to be educating the media as to how they should be talking about deafness. They need to be educating the media about using positive imagery and about steering away from the constant negativity surrounding being deaf.
While I acknowledge going deaf can be hard I know there are thousands upon thousands of people who are deaf who don’t want to be constantly depicited as sad sacks that need to be fixed! More importantly we don’t want hearing to be promoted as the ultimate and only way!
There is a way to promote Deafness in a positve way. Hiding it and denying it is not one! Promoting hearing as the ultimate is not one. We need balance and Deafness Forum at present are not doing that – I am sick of the Audist drivel they are promoting – They have to do better than that!
In closing I present for them a sample of positive imagery in deafness – PLEASE TAKE NOTE!
A good friend agreed to be my referee for a prestigous Board position recently. It’s not one of those Board positions where you are expected to volunteer your time out of the goodness of your heart. They will actually pay me for my time. A rarity in the disabity area where we are expected to give and keep on giving. But this post is not about that, its about what my friend said when he completed my referee check, “I described you as a pioneer for access to tertiary education for disability ….”
I laughed and made some self-depreciating comment along the lines of, “My invoice is in the mail.” But truth be known I was proud, touched and even a little emotional. You see my journey to education access has been a long one. My friends kind comments gave me pause to reflect. I decided to write about it, as I do. But it is a long story so it will be in two parts. I hope the reader finds my journey to accessibility as interesting as I have..
My Deafness became profound between ages of 9 and 10. It was not a fun time. I was fitted with hearing aids and wouldn’t wear them. Not an uncommon thing for young deaf kids. I couldn’t hear much with them anyway. My academic work suffered. I went from being near top of the class to near the bottom. That is the sort of impact not being able to hear can have.
I had no support in class. I kind of bluffed my way through. Copying friends work. Constantly looking over my shoulder. Trying to work out what to do because I had not heard the teacher. Always in trouble because I could no longer monitor my voice. I couldn’t whipser and still can’t. I was told to be quiet constantly. “TELL KERRIDGE TO SHUT UP.” Dutifully my desk mates would let me know I had that I had been thus told. I came to loathe school.
One day we had music. We sang along to Scotland the Brave. I sang too, following the words from the song book. I was really into it, belting it out at the toop of my voice. Suddenly I became aware that I was the only one singing. I was miles behind everyone. Out of tune too. Everyone was staring. Even the teacher had to stifle a laugh. Comical as it must have been, my humiliation was extreme.
And you know friends treat you different. They no longer want you on their team. You are always chosen last. And they tease you. They try to make you lipread things wrong. “Are you a girl ….???” – “Are you a poof …???”
Kids are cruel, extremely so. I knew what they were doing and sometimes I would play along just to see their reaction. Believe me deafness can lead you to lose faith in people very quickly.
You feel stupid. You feel worthless. Your school work comes back with an F. Your maths is all wrong. You dont know what to do when the teacher is explaining games or activities. You just want to curl up and die. It is hard, very hard. This was what school was like for me for four long years.
You try to compensate. You become the bad kid in the class. The negative attention to your behaviour is better than the constant struggle with deafness. You talk all the time so you dont have to talk to people or listen to them. You talk over people and distract everyone. You see, doing all the talking is better than having to listen when you cannot hear.
It was a traumatic time. A horrible time. It came to head in high school, I began to wag school rather than have to confront the evey day struggle of being deaf in a hearing school. I would catch the bus and travel right on past the school. All the way to Elizabeth shopping centre. I was well informed though because I would read the newspaper on the public toilet from start to finish. I did this for fourteen days in a row before the school saw sense to call my mum and ask where I was.
I was in a bad way at the time. I experiencing paranoia. Being deaf in a hearing environment, when you are the only deaf person, is a nightmare for any adolescent. I well recall sitting at the back of the school bus religiously. I did this so that I could see everyone. You see I had this unhealthy fear that people might talk to me or about me. Not being able to hear people caused me paranoia. I feared they were all talking about me and laughing at me. By sitting at the back I could at least see everyone and in this small way my anxiety was lessened.
To cut a long story short my parents decided that I needed extra support and I ended up at the now defunct Centre for Hearing Impaired Children at Strathmont High School. There I received support for the first time since losing my hearing around the age of 9. I was 14 years old. For the first time I met other deaf young people. For the first time I was exposed to sign language. With support from the teachers of the deaf I began to rediscover my academic mojo.
Support at the school was just adequate by todays standards. I mean when I started at the school I could not sign. Interpreting classes was not really an option. But also, looking back, the signing skills of the teachers of the deaf was so poor it was probably a good thing that they did not interpret for me.
Instead they took notes. They would sit next to me me and note the SALIENT points of the class. I emphasise salient because the access that I got to the information was entirely dependent on whether the teacher of the deaf thought it was relevant or not.
So I still missed out on a lot. I missed out on peer learning for example. I missed most of the questions and the answers from the class. All this is important for learning. Still, the note-taking of the teachers was adequate enough for my academic progress to pick up.
I was not then, and am not now, your ideal student. I get bored and distracted easily. My mind drifts. I would have “Can’t be Fucked” days and fake sickness and stay home. I often missed the bus and was late. In short, I did not help myself. In hindsight those teachers did a wonderful job with someone who was often his own worst enemy.
I am grateful for the support that they provided. I have no doubt that without it, and if I had stayed in a mainstream school without support, it is unlikely that I would have succeeded academically at all. I hate to think where I would have ended up given the traumatic experience of school that I had experienced before moving to Strathmont.
The school was a bit of a culture shock really. Deaf kids are so nosey. They gather round you and ask you so many questions. You Deaf? Your parents Deaf? Brother sister Deaf? How go Deaf? You sign? They never shut up. The thing about these kids that I noticed,. even at that early age, was the gap in their language. Well at least their English language. Their writing was appalling. They didn’t get my jokes. I was used to odd looks when I told jokes but completely blank stares was another thing altogether.
My arrival at the school was not a romantic ever after story but it was the awakening in me for the fight for Deaf rights. I mean I had just come from five years of hell. A hell that no kid should ever have to experience. I was bitter about that. I was witnessing, although I did not know it at the time, language deprivation among deaf kids for the first time.
I was full of questions. Why was their English so bad? Why did the kids from Deaf families, who signed and didn’t speak, have better English than the kids from the hearing families? Surely the reverse should be true? As I learnt to sign I realised that the teachers of the deaf at the school signed terribly and sometimes even struggled to understand the deaf kids. This realisation left me appalled.
I remember soon after leaving school I penned an article for the Parents of Hearing Impaired Children in South Australia. I basically decried the horrendous signing skills of the teachers. I told the story of the art teacher, a Mr Dumucious, who became a fill-in teacher of the deaf. Jovial guy as he was, he couldn’t even finger spell properly. There was no way he would have been able to support deaf kids in class. Yet there he was, employed as a teacher of the deaf.
I wrote the article because I wanted better opportunities for Deaf kids. It did not go down well at the school. I was the poster boy you see. The first to matriculate from the school or any Centre for Hearing Impaired Children. The principal of the time let me know what he thought of me for writing it. His choice of language was, shall we say, colourful.
My journey to matriculation was not plain sailing either. I left school twice. You see deaf kids were not supposed to be academic. They were supposed to work with their hands and in factories. The world of the Deaf professional was unimaginable. How would they communicate? How would they speak on the phone ? How would they satisfy consumer and client needs? Impossible! Factories and making things or simple admin work were the way to go.
The problem was that I was lousy with my hands. Luckily, perhaps, I was involved in a road accident when I was starting out as a cabinet maker. I had to get lunches for everyone on a colleagues bike. I would cycle to and from the local bakery with lunch orders. One day I foolishly pulled out in front of a motorcycle without looking while turning the corner. I was sent flying and broke my elbow. To this day I cannot straighten out the elbow. That was the end of my quest to make cabinets. I was lousy at it anyway, but at least it set forth a chain of events where I matriculated.
Matriculation brought with it the challenges of university education. This at a time in Australia when support for students with a disability was almost non existent. This is part two of my story – a journey to accessibility.
Oh how I laughed when I first saw this video. It is a brilliant send up of all those emotionally manipulative videos that try to inspire us. You have little kid sitting on mums lap. Either they are turning on his/her hearing aids or their cochlear implant is about to get switched on. The eyes of young kiddie light up. Mummy says. “I love you” and tears abound. The headline invariably reads, “Child hears I love you for the first time”
And people buy into this you know. They want to believe that miracles do happen. They want to believe that sad, tragic deaf kid has been fixed. Sad tragic deaf kid is now like everyone. NORMAL. They can hear and at that very moment their life just suddenly became enriched and worthwhile. Saved from the tyranny of silence. How wonderful. Except it isn’t.
Now, don’t get me wrong, I am not anti-cochlear implant. Many of my friends have implants and love them. Golly, if they break down or are forgotten, for many of my friends this is akin to near death. There are many young people that I have worked with who have done wonderfully well with their implants. They have great language development. They are educated and confident. The implant is a great thing. Australians are rightfully proud that it is an Australian invention.
And we should celebrate this. It is a good thing. BUT – what we should not do is mislead. These videos of kids at switch on time are misleading to the extreme. It never happens like this. Switch on time is just the start of a long and exhausting process to learn how to hear with an implant. It does not happen straight away.
As a friend told me. The switch on is traumatic. It is traumatic because all you hear is noise. I am told that initially it is not pleasant. It is even irritating. For some the sound is so horrible that they burst into tears. For some it is a sound that they can not countenance and they do give up simply because they hate it.
For others it’s just the start of their battle to hear. It takes resilience, patience and hard work. When it works it is fabulous. When it doesn’t it’s frustrating, For some they feel like a failure. Their hopes raised so high and to not be able make good use of their implant after the pain of surgery, it is a very frustrating and traumatic thing.
Some kids grow to hate their implants and do away with them when they are adults. Some are bitter that they were forced to have the implant. I have known some so angry and bitter that they have had surgery to remove the device. As an interpreter friend told me once, switch on time is often one of shock and tears. It is not a time of joy.
For all these reasons videos like the one below are dangerous. They raise unrealistic expectations and, at worst, set people up to fail. They give parents a false hope and do not tell the story of the long hard slog to able to hear using the implant, This is just wrong.
As an advocate for deaf people over many years I have always wanted to ensure that people get accurate information so that they can make informed choices. Nothing offends me more than the hearing world promoting an idea that deafness is a tragedy.
Sure for some it is, especially latter deafened people who must learn to adjust. The onset of deafness can be socially isolating and lead to social withdrawal and severe depression. But Deafness is not always that way and it does not need to be that way. The experience of deafness is varied and for many a very positive thing.
For many years I have witnessed and had to work with language deprived young people who are deaf. I have had to work with language deprived adults as well. I have seen their struggles to be educated, get a job and to be involved in the world on an equal footing. It is a tragedy that really need not happen. It is not for nothing that the late and great Oliver Sacks described deafness as a preventable form of intellectual disability. (With apologies to readers and friends who will find the latter statement upsetting.)
Usually this happens because parents are given false hope that technology and hearing aids will provide all the answer. More often than not this is not the case.
Sure I understand hearing parents wanting their deaf child to be part of their world. I even understand Deaf parents of Deaf kids wanting their Deaf kids to be able to hear as well as they can so that they can be part of both worlds. But to ensure this happens accurate and realistic information needs to be shared. False hopes and media beat ups like the above video need to be avoided.
Recently Deafness Forum Australia, to my immense disappointment, shared such a video on Facebook. For an organisation that represents both Deaf and hard of hearing people to share such a video is unforgivable. Thankfully Deaf people and hearing professionals from all over Australia let them know how appalling it was to share such videos. Deafness Forum sensibly removed the offending video.
That they shared it in the first place tells me that the culture of the organisation is becoming increasingly audist. Indeed their Hearing Health campaign, needed as it is, is nearly all about hearing and prevention of deafness. This is why I am no longer a member, It disappoints me because as an ex-Board member I know that the Deafness Forum of old would never have countenanced sharing misleading information such as the above.
But realising their error they took it down so kudos to them for that. Let us hope that they have learnt their lesson and never again consider sharing such biased and misleading videos that are akin to hearing propaganda.
In closing I share a comment of a deaf person to the offending video and post from Deafness Forum.
And that is the reality for many! Poor form Deafness Forum, lift your game.