My experience with being me:

“You’re too loud!” – I stopped talking.

“You closed the cabinet/door too loudly!” (I also quickly apologize if I think I may have done something loudly or too hard. Not to the Hearing person, but to the door or cabinet. Yeah) – I am painstakingly careful to the point of refusing to participate in family kitchen/party activities.

“My Gosh, I could hear you stomping from the other side of the house! Walk softly!” – I learn to walk toe-heel steps so softly no one knows I am present. (I have scared people when suddenly appearing.)

“You chew too loudly!” – I eat alone more often than not. And when I do eat with others I am wary of making sound so I tend to eat very slowly. (And then they complain I eat too slowly.)

“You breathe too loudly!” – I often find myself gasping for air to avoid annoying others with my breathing.

A lover asks, “Are you into me? You’re too quiet when we’re making love!” – During intimacy I make no sound at all. Lord knows I don’t want to embarrass my lover.

These are my lived experiences just being a kid, and then an adult with being hard of hearing and now Deaf.

I once had a strong, jovial laugh and high energy.

Now, no one knows I am present and they don’t know when I am gone because I will simply disappear when I am told I am too much.

JC Wordsmith

I am not sure if JC Wordsmith is an actual person, but can you feel their TRAUMA? I certainly can.

Lately, I have started to think that I no longer want to be deaf. I have been exposed to so many stories of deaf trauma in the past few weeks that I have begun to wonder if it is all worthwhile. Whether it is adults, children or parents of deaf kids, the deaf experience seems to be one big TRAUMA! Everywhere I look be it at the theatre, on TV, in my work, on Facebook or just in everyday life, there is so much TRAUMA in the deaf experience. Nearly all of it is to do with interacting with a hearing world. It is exhausting.

Last night was no different. I turned on New Amsterdam on Stan. A new episode arrives every Wednesday. Marnie and I watch it religiously. Last night, the psychiatrist was assessing a two year old boy. He had severe behavioural issues. He screamed, he spat, he hit, he threw and was generally a real handful. His parents wanted answers. As it turned out, the boy was deaf. The smart psychiatrist diagnosed him in five minutes as having, “Language Deprivation Syndrome” (It is TV land; they’re allowed )

As it turns out, the parents had been ill advised. Hearing professionals told them if their lad learnt to sign, it would impact on his speech development. They said sign language would prevent him lipreading. They said sign language would narrow down his circle of peers and he wouldn’t be able to function in a hearing world. Sounds familiar, doesn’t it?

So clever psychiatrist starts gesturing and signing to young deaf lad who immediately smiles and responds, and even copies the psychiatrist signing, verbatim. The parents look on in wonder. To continue their education, the clever psychiatrist takes the young deaf lad and parents to see a deaf doctor operating in the theatre. The young deaf lad is in awe, perhaps seeing hope for himself in the future. The parents are amazed.

There has to be a happy ending, right? It’s TV land after all. The psychiatrist, without a hint of irony and with a big smile, says the young deaf lad needs to go to a deaf school for total language immersion. Only problem is the school is four hours away and the young lad will have to reside there. His parents look horrified for they will be separated from their child! We never got to know what happened. The last scene with the deaf lad is seeing the parents’ horrified faces at the prospect of being separated from their child. Truth be known, a lot of this is what parents of deaf kids experience in real life, even if it was condensed. It is pure TRAUMA, nothing less.

Moving on to Facebook; a friend screams on her status that she hates the NDIS. They have denied her funding for a visual alert system that will notify her of fire or someone at the door no matter where she is in the house. It is colour coded too, so she knows whether it is the door bell or the fire alarm going off. The NDIS say it is too expensive and want her to get an inferior system that relies on batteries and remembering to wear a pager. God forbid if you forget your pager or the batteries go flat and there is a fire. You are literally toast. (Apologies for the visual image.)

They denied her hearing aids too, despite these being recommended by a hearing professional with detailed reports. Too expensive, apparently. She is appealing which means she has to get even more reports with no guarantee that the hearing aids she wants will be approved. The paradox is that the NDIS pays for these reports and the reports, along with the appeals process, probably cost more than the hearing aids themselves, Meanwhile, my friend is made to feel devalued and to jump through hoops. – TRAUMA!

Moving on to theatre; I am attending a Deaf story telling night. There is a deaf woman on stage. She is recounting her upbringing in a hearing family. She talks of her isolation around the dinner table as her family banter rapidly expecting her to lipread them all. Inevitably, she gives up, finishes her dinner quickly and retreats. She talks of having to watch TV on her own because her family don’t like subtitles. Sitting on her own, she would often glance at the rest of the family watching TV together, talking and laughing in the other room. She tells the tale of her family learning Auslan to communicate with her Deaf boyfriend. When she and her boyfriend broke up, they stopped learning because she was oral and could supposedly communicate with them without problems. – TRAUMA!

Back to Facebook. A mother has discovered that cochlear implants apparently can provide data of usage to hearing professionals. Hearing professionals are able to use this data to ascertain how often the device is used. There is a family that, apparently, give their child a break from the cochlear implant because it causes exhaustion and headaches if used all day. Hearing professionals have ascertained when this break happens and have told the parents to ensure the cochlear implant is used throughout the day until bedtime. Cue guilt for the parents and never ending exhaustion of the child who has to use the cochlear implant 24/7. – TRAUMA!

Does it ever end? No wonder deaf people have some of the highest incidences of mental health issues in the world. This constant fight to meet the standards and demands of hearing people is absolutely exhausting and worst of all, TRAUMATIC.

I know the life of deaf people is far more positive than the traumatic stories we see and hear everyday. I know that deaf people are not all a bunch of sad sacks. There are happy stories out there. Like how I met my deaf wife at the front door and I was wearing Humphrey B Bear boxer shorts.

I have a challenge to readers of The Rebuttal. Send me your happy deaf stories and I will compile an article or a series of articles to highlight these positive stories. Email them to me at adefinty2@gmail.com. Please! Because, quite frankly, I have had a gutful of all this TRAUMA! It’s exhausting!

“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.”
― Laurell K. Hamilton, Mistral’s Kiss

I was following a discussion on a Facebook group last night. A mother was asking whether mainstream schooling or support within a Deaf school or Deaf unit was better. It is an age old dilemma for parents of deaf kids. Some advised the mother to choose deaf schools or units so that her child could be around deaf kids, communicate easily, make friends and get the support that they require. Some advised the mother that mainstreaming is better and that exposure to hearing kids is good for development and speech. I fancy that at the end of the discussion the mothers dilemma was even greater because there was no clear consensus.

One of the responses that struck me went along the lines as follows:

” My Johnny is doing great in a mainstream school. He has heaps of hearing friends and is involved in everything. I asked him if he was happy and he said he was. He doesn’t really need signing, he is doing great .. “

Perhaps I am getting old, but I often read such comments with a great deal of skepticism.

I say ‘Old‘ because I realise things are very different now than from my time at school. Hell, I am 58 and when I left school cochlear implants had been around for about 5 years. Implantation in young kids was very rare then, it is not now. Virtually every deaf kid who can gets an implant these days. That isn’t a bad thing.

My observations are only anecdotal. I cant back them up with any research, but I am sure that there is plenty out there. What I see is that kids who were implanted early, many of them have great speech and great English language development. Not all of them. Some don’t respond well to implantation and you will need someone more qualified than me to explain why. However, what I do see is that many implanted kids have good English and great speech.

What I also see, despite the better speech and English language, is that they still often struggle in hearing settings. Particularly as they get older. Particularly as they begin to be ‘self directed’ and don’t have the support of a school or a visiting teacher. I have spoken to many of these young kids and, despite their good speech and language, they often tell me how frustrated that they are at school.

What it seems to come down to is that once they get into an environment where communication is not controlled, where all are talking at once, where there is a lot of background noise and where everything is spontaneous, these kids with implants become very frustrated and isolated.

Again, I point out that these are my anecdotal observations. However, as I stated, many of these kids find their way to the Deaf community later. They begin to learn Auslan, they begin to experience full inclusion where communication is not such a struggle. They begin to feel fully valued. For many, perhaps for the first time, socialising becomes fun and something to look forward to rather than hard work.

It probably isn’t a lot different from ‘successful oral people‘ of years gone by who later found their way to the Deaf community. Those people who were told that – ” … your speech is so good, no one will know that you are deaf.” What this backhanded kind of compliment tells them is – ‘Hearing Good, deaf Bad’ This is kind of stone age isn’t it? But that is the message that came through.

In my time I was told things like, ” Your hearing aid is so small, no one will ever know.” or “Grow your hair long and no one will ever see it.” The message is the same, ‘hearing Good, deaf Bad’ Cover it up, hide it and everyone will think you are are the SAME as them. That would be until the hearing aid started whistling. Cue everyone looking at you and pointing to their ears to let you know that your hearing aid is whistling. Talk about standing out!

If anyone had asked me back then if I was happy, I would have said yes. If anyone had asked me if I had friends, I would have said yes. But was I happy? A lot of the time, no! I was acutely aware of my difference and tried everything to hide it. Hell, it took me wagging school 14 days in a row before the school contacted my parents and people kinda twigged that perhaps all was not well.

And kids are cruel. Knowing I was a lipreader some would come up to me after school and mouth things like, “Are you a poof …?” No disrespect to lgbtqia+ friends and readers, but that’s what they did. I would look at them kind of blankly and they would all giggle and walk off slapping themselves on the back in acknowledgment of their own hilarity.

School in the mainstream was not fun. For me to openly say that I was not happy was to acknowledge my deafness. There was no way that I was doing that. As a kid, particularly as an adolescent, that is the last thing that you want to do. It can be tough, and while I am sure cochlear implants might have made this easier, the fact that a lot of young people with implants find their way to the Deaf community as they get older suggests that many of these issues probably still exist.

In 1996 I was employed as the Project Officer for the National Mental Health Education Project for Young Deaf People. I was able to research some of the social impacts of deafness on young deaf people. I came across many who were mainstreamed. Many socially struggled. I found that there were different types of young deaf individuals.

Those that sat on their own at lunch time. Those that chose a different friend every month. They would find a friend and smother them to death because it was easy to communicate with that person. Often times this ‘FRIEND’ would start to avoid them. So they would find another friend and the cycle would recommence. There were those who, in an effort to control communication and avoid having to listen, just spoke all the time, played the clown and spoke over others. AND – there were some that were well adapted and coped very well. Some could be any of the above mentioned at any given time.

The variations were stark. The impact on the self esteem and mental health of these young people could be severe indeed. I am pretty sure that many Deaf and hard of hearing people who read this will be triggered by what I am writing. I know that many took the pain of their younger years into adulthood. It took a lot of counselling and hard work to overcome the negative experience.

My own view is that it comes back to the fact that in these early days the message is, even if it is unconscious, ‘hearing Good, deaf Bad’. There is no value for deafness, no value for differentness. The consequence of this is that the young deaf person feels not valued unless they can show they can exist as a ‘HEARING’ person in a ‘HEARING’ world. It is that message, in my view, that does untold damage that can take years to repair and unpack.

I believe society can help by being loud and proud about being deaf. Let deaf kids meet other deaf kids. Let them socialise regularly. Value Deaf schools and units that support deaf kids. See them as viable options that add value to the education and development of deaf kids. The Deaf identity has a place, a very important place. The hearing world needs to value all of these things.

So your deaf kid says they are happy? Hopefully they are, but it ain’t necessarily so!