It’s been an interesting week. It started when I decided to critique Edan Chapman’s article, We Are the Deaf. My intent was simply to show that for every Edan that there are moderates. Even though Edan had been writing figuratively I feared that there would be many who would take him literally, over generalise and take offence at his strong imagery. I felt that needed to be challenged.

Oh dear! Very rarely have I copped so much flack from both Deaf and hearing people alike. The Deaf feeling I was too pro-hearing while the hearing seemed to feel I was shoving deaf propaganda down their throats. For a writer, the response was fascinating.

In my wisdom, or lack of it, I shared my post at the Aussie Deaf Kids Facebook page. I thought it relevant. I thought it would be topical for people to read how angry some deaf people are.  I thought I could try to reassure them that not all deaf people feel as Edan does, even if he was writing figuratively. Mostly I wanted parents to know that it was not OK to attack the choices that they have to make for their deaf children, specifically to give their child an implant.

What I didn’t predict was the savagery of the response. Chapman got vilified by a few people. He was labelled sick, in need  of medication and people urged him to see a good counsellour.  All he did was express his feelings and darkest thoughts. For whatever reason this seems to have given people a licence to attack Chapman in the most vile way. This is not OK.

Then the attacks began on me. I was labelled a shit stirrer by certain members at the Aussie Deaf Kids page. I was accused of throwing bombs and waiting in glee for the reaction. I am not denying that I can and have done this in the past but this was not my intent here.

Some people tried to give the group some perspective. They too were vilified. One was told to, “Go away and go back to the group you set up with xxxxx… ” Another was told not to like comments if she could not agree with what was being said. Some of the reaction was so emotive it was bordering on animalistic. And all this because I wanted parents to know that many of us are on their side.

As the war raged at the Aussie Deaf Kids page I tried to pacify the angry people. I am a deaf person with a lived experience of deafness. I tried to explain that kids with cochlear implants seem to be doing a lot better with language and literacy development than deaf kids of the past. I was quite honest and explained that many of these kids find their way to the Deaf community later because interacting with hearing world on a full-time bases was difficult for many. I tried to explain the diversity in the success of implants and how for many sound was never going to be the full answer. I got labelled as an anti-oralist who attacked oralism at every opportunity. It was a battle I could not win. I quietly withdrew.

But among all the extremist there were also some very rationale parents. These parents thanked me and other posters for providing them with another perspective. They said it allowed them understand some of the challenges that their kids might confront in the future. Some went as far as saying that unless people stopped trying to paint deafness as if it was all fluff they would leave the group. Sadly some of them actually did. One messaged me privately and said – ” I get tired of arguing with stupid people at the best of times who refuse to consider reality.”

It worries me that people like myself who have lived with deafness, been educated with deafness and been employed with deafness are so easily dismissed and shut down. I am in a unique situation where I have actually worked in the disability sector, including with young deaf kids and their families, for the last 30 years. You would think someone with that level of experience would be respected and listened to. Instead I somehow get labelled as anti-oralist and as someone who wants to shove sign language down peoples throats. It is a bit sad.

I don’t want to scare parents of deaf kids but I do want them to be aware that its not always a bed of roses living in this life as a deaf person. One of the first articles on the topic of deaf kids that I wrote was Carrie. Although it was a fictional story it told of my own experience living in a hearing family and also provided anecdotes of deaf kids that I had supported throughout my career. This is what I had to say,

” She gazes around at her family members who are all in conversation. Mum is in an animated discussion with her sister. Dad is typically silent, fork in mouth, while he watches Sally do her job as principal on Home and Away. Her two brothers, Aden and Finlay, are discussing something loudly and obviously not agreeing. She looks at her brothers and uses the universal sign for “What’s up?” Palms facing upwards, elbows bent and a shrug of the shoulders. Finlay, with over-exaggerated lip movements, replies, “Tell you later,” while clumsily signing, “Tell you over”.

Carrie sighs and toys with the idea of trying to find out what the others are talking about. In the end she decides not to. She knows that the response from other family members will be the same as Finlay’s, “…tell you later.” She looks back down at her Brussels sprout. It suddenly becomes more appealing.

Carrie’s mother, Katie, watches her out of the corner of her eye. Like most mothers she can sense when something is not quite right with her children. She knows that Carrie is often isolated within the family at times like this when they are all chatting avidly. She is at loss as to what to do.”

These are the stories that I want  parents to read and discuss. I just want parents to be aware of some of the family dynamics that can and do occur. Dinner time conversations are so valuable to deaf kids. If parents can share stories about strategies that they use to improve inclusion for their deaf kids it can only be a good thing. It is not about being signing or oral, its just about making sure the deaf kid is fully considered in the family dynamic. Sure it’s a bit scary but this is the reality.

I constantly  hear that so and so’s deaf kid is doing marvelously. I am pleased to hear this. BUT I can tell you that as the deaf kid grows older they will start to question who they are. Some will do OK, others will withdraw and some will become plain angry. Young kids hate to be different. As deaf kids begin to explore who they are and what their deafness means to them they will respond in different ways. It is not always positive.

I’ve written about this too in the article David.  I wrote,

“On the bus going home from school David sat by himself. He liked to sit at the very back of the bus so he could see everyone in front of him. If he could not get a seat at the back he found himself anxiously looking around. He feared that someone would be talking to him and he would not know. He wondered if they were staring at him, talking about him or making fun of him. Being a teenager he felt a strong desire to fit in. His deafness set him apart from his school mates and he hated it. This fear of interaction and unwanted attention was his constant companion.”

Although I give my stories a character like David or Carrie these stories are often me recounting my own personal experiences. These are some of the many challenges that I had to confront as a young deaf person. It was not all negative but it was not all positive either.

I really believe these stories can help parents understand some of the psychological and developmental issues that deaf kids face. In this way they can support and guide their kids. Sometimes it just cannot be sugar-coated.

The reality is best illustrated by this brilliant poem by Ant Lill – It is printed here with permission. Take us out Ant!

What works for you does not work for me

There’s an illusion here instead of reality

I can’t hear like you and probably never will

We all talk and chat and I’m no wiser still

 

What works for you does not work for me

There’s an illusion here instead of reality

 

You see, it’s hard to follow the conversation

So many voices going with such intention

But the meaning is lost in all of the babble

Every gathering is much more than a battle

 

What works for you does not work for me

There’s an illusion here instead of reality

 

Voices chattering, much laughter follows

But the feeling inside of me is so hollow

Five minutes later I get the joke in its wake

Relentless, this is often more than I can take

 

What works for you does not work for me

There’s an illusion here instead of reality

 

I can talk just like you, thats the illusion

But when I ask for repeats its an intrusion

Interrupting the ebb and flow of the banter

Seems better to keep quiet ‘n’ sip my Fanta

 

What works for you does not work for me

There’s an illusion here instead of reality

 

I read, write and talk perfectly – all in vain

Especially if I feel I dont belong in the main

Whats the point of my talking with precision

When I cant hear advice to make a decision

 

What works for you does not work for me

There’s an illusion here instead of reality

Every day is fraught with tension and stress

So many times I hear – it’s a complete mess

Is it any wonder that I fear any social setting

Its easier to sit with the dogs and do petting

 

What works for you does not work for me

There’s an illusion here instead of reality

A hearing aid doesnt fix my hearing at all

It’s sort of ok for one on one but that’s all

So I grab someone away from the throng

Some deem this as antisocial and wrong

 

What works for you does not work for me

There’s an illusion here instead of reality

 

There’s lots of deaf that are hoping to fit in

We see the looks, asking again – always a sin

Only so much before they will get frustrated

Wishing it was elsewhere we’d been allocated

 

What works for you does not work for me

There’s an illusion here instead of reality

 

At the end we hug or handshake to close our chat

I thought – well thank goodness I understood that

To be honest I’m not too sure if there is a solution

Either way I look at it – total and utter convolution

 

But at the end of the day us deafs are tired of doing most the work

While others seamlessly, effortlessly enjoy without going berserk

Let’s give the deafs a hand, help them understand whats going on

It’s a start and once we get going it’ll be better, we’ll move along

 

All you have to remember is;

 

What works for you does not work for me

There’s an illusion here instead of reality