Shutting Down

When I was a young lad my mother was my phone. I would get her to call my mate Phil to meet me over the oval to play cricket or soccer. She would do this without complaint. I spent many an hour over the oval with my mates playing sport. I was rarely home. I would be out in the morning and home when it got dark. After school was the same. There was no time to waste. There was a ball to be kicked, thrown or hit. There was a game to be had and teams to be created. There was soccer to be trained for and golf to be improved. That was my life and a lot was obligingly arranged by the phone that was my mother.

As I got older she would sometimes call girlfriends too. As cringe-worthy as it may sound she would sometimes have to call my girlfriend to confirm or make arrangements. Obviously I tried to keep this to the minimum but it was often the only way. This was, of course, in the years before the National Relay Service (NRS). It was before mobile phones. It was before we could reach any one all the time and at anytime. All just from the small electronic device that has become a permanent part of our palm.

I think I saw my first ever TTY in 1985. It was when I was studying at Mt Gravatt College of Advanced Education.  There were deaf students at the halls of residence where I lived and a TTY was provided for them. Of course we could only call people that we knew who had a TTY. My poor friend Bobbie was the only one I knew who had one and I would call her. Probably too much. Sorry Bobbie but it was a novelty for me at the time.

Back in those days the lack of access to a phone drove me nuts. I always had to find someone to call for me. I remember living in England and a girl at a bar slipping me her phone number as we left. I had to get my cousin to call her. He pretended to be me on the phone because I was too embarrassed back then to have to tell the girl that I was deaf. He actually arranged a date for me but I had something else on that night and jilted the poor girl.

That is how it was back then. Lack of phone access was a real barrier for people who were deaf. It prevented them getting jobs. It prevented them calling hearing friends. It prevented them doing simple things like calling a cab or ordering a pizza. It was a pain, but it didn’t kill us did it? We some how found a way.

Then came the NRS in 1995. Suddenly we could make calls on our TTY to anyone that we wanted. OK it was kind of stilted communication but it gave us access. We could call friends. We could arrange travel overseas through the phone. For many of us it allowed us to do jobs that previously we could not.

The NRS excited us  deafies in 1995. We were not to know what would become possible in less than a decade. By the year 2000 mobile phones were booming. The first mobile phones were like bricks. I remember working for what is now Deaf Children Australia. I took a portable TTY and a mobile phone with me on a road trip. It was this massive brick of a mobile phone. I was out on the Great Ocean Road looking for a farm where a deaf kid resided. As I do I got lost and was late. No matter I had my portable TTY and my brick mobile. But dang it there was no reception. I had to drive around for half an hour before I could find any. Eventually I got reception. I put the TTY on the bonnet of the car and dialed the NRS through the mobile. I had to hold the mobile down tight on the phone sockets of the TTY to make it work and type with one hand. But no matter I phoned the kids mum and found my way to the farm house. It was primitive by today’s standards but back then it was OH so exciting.

Of course mobiles then got smaller and smaller. At first you could only send text messages to a phone that was from the same provider – Eg Telstra to Telstra or Optus to Optus.  But thanks to some lobbying from Deaf Australia and the phone companies realising  it was good business they opened up SMS to all phones. It wasn’t cheap and SMS was addictive. At anytime, and without a go between, we could now communicate with people through a text message. At 25 cents a pop a text thread could set you back a pretty penny. It is a far cry from today where we can get unlimited text as part of our phone contracts. I know of many a deaf person who got into trouble financially because they caught text mania. (For the record a text in 1999 cost phone companies something like .007 cents and they charged people 25 cents a message – It was a huge rip off.)

So in a few short years from 1995, where deaf people only had a TTY and the NRS, suddenly our telecommunications options boomed. It was like all of our Christmases came at once. But it didn’t stop there because the internet started to take over. And then there was MSN messenger!!!

Believe it or not I found out about Messenger from my hearing boss. I arrived at Ballarat for my new job as the Regional Disability Liaison Officer and she told me that this was a way that we could communicate with each other. She showed me how to sign up and we were away. I promptly then told my wife and all my friends. Suddenly I had this network of friends who I could contact at anytime! And there were chat rooms. I chatted in those too and a few of the people I met there became Facebook friends later. And you know for the first time I felt equal. In chat rooms or MSN Messenger I could talk with anyone at any time and on my own terms. It was heady stuff.

In a little over ten years I went from having virtually no access to the phone and having to rely on hearing people to make phone calls for me to being able to communicate with virtually anyone at anytime. Mobiles  and data plans became cheaper and more flexible. In the palm of my hand and at my finger tips I had a tool to communicate with anyone, 24/7. Be it text, Messenger, email or occasionally the NRS; communication and independence were finally mine.

Then in 2007 Bobbie, the poor soul who I TTY’d constantly all those years ago, invited me to Facebook. At first the idea of status updates and throwing sheep at people (remember that) did not appeal and I rarely used it. But my wife did and she was on it all the time. First at the computer and then, when data plans became cheaper and the internet more accessible, on her phone. It was not until 2008 that I gave it a proper go.

And I got hooked. Well and truly. By the time I got round to really discovering what Facebook was it had grown into a monster. But it was an exciting monster. It was exciting because it kept me up to date with everything.

Prior to Facebook deaf people missed out on a lot. Captioning on TV was not nearly as good as it is now … On Free to air now (not the new channels) its almost 100%. Of course deaf people don’t listen to the radio either. They cant sit in a cafe and passively take in the gossip and the happenings of the world. They cant sit on a bus and listen to what Jemma heard Sally tell Peter that she heard from Rob who heard it on the radio while driving to work. In short deaf people missed out on heaps. Facebook changed all that.

Tempest would update us every ten minutes about her gay friend who got married in the Maldives but the marriage couldn’t be recognised in Australia and what a scandal that was. And of course all of her 3000 facebook friends had to offer an opinion in the comments. Peter could share about the latest Football scandal and add his opinion about why AFL was dank and the SANFL was better and all of his 15 facebook friends could comment about what rubbish he was talking. All the political news, the scandals and the gossip appeared every second of the day through posts or status updates. All we need to do to be up to date is keep looking at Facebook.

And then Facebook developed video and Auslan was everywhere. And it took over Messenger so that if some bit of gossip came up we could get our besties online and chat about it anytime and all in one spot. Then it developed groups where like minded people joined to talk about like minded things. We could talk about disability things, the NDIS, Football or our favourite music genres.. There were clips and videos and funnies. It was and remains a wonderful thing. The problem is, even though technology and Facebook have made the world more accessible for deaf people, it never stops.

Technology and Facebook consume us. They take over nearly every aspect of our lives. At home families spend all their time on the couch looking at their phones and forgetting to talk to each other. People use it as a tool for bullying and this has led to tragedy. Among the positive there is also a constant bombardment of the negative. Trump is here. Trump is there. Trump is everywhere. Every time we look at him or read something about him there is rising anger and fear. Politics is non-stop. Racism rears its ugly head. Bigotry is in your face every day. For all the times that we are entertained and comforted there are a multitude of times that our sensibilities are constantly attacked. The beauty and the ugliness of humanity is right there in front of us 24/7. It has begun to sap us, well me at least,  of our energy.

I found that I could not switch off. At work I would be focusing on the NDIS. After work any number of people by text, Messenger or usually Facebook would contact me. I was always happy to help and remain so. It could be about applying for the NDIS, understanding a plan, working within the NDIS or just an almighty whinge about how dreadfully complex the system is. It is almost like I was at work 24/7. I often cannot switch off!

It is a roller coaster. It can be funny, it can be poignant, it can be angry, it can be tragic, it can be relevant or irrelevant.  Mostly it is never ending and it all became too much. So I shut it down.

Technology and programs like Facebook have been godsends for deaf people BUT at some point it has become too much, for me anyway. I know it is my fault that I let this happen, I know I became way to invested in this new world and I have no one else to blame except myself. But it became time to switch off and find some inner peace so I switched it off. I am glad that I did.

I will be back soon. But I will switch off regularly. I gotta post Rebuttals after all. Take sometime for yourself, leave your phone at home, walk the dogs, go for dinner or see a movie. Just leave your bloody phone at home sometimes.

We lived quite successfully without mobiles once. A few hours a day or even a week wont kill you but the alternative might.

 

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I’m back and I matter.

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I am a proud disability advocate. I have always prided myself on being able to say the things that no one else will say. Too often in life we people with a disability are expected to suck it up. We are expected to be grateful for what we get. We are expected to adapt and adjust to a world that simply refuses, for the most part, to acknowledge our existence.

It is always us that is expected to adapt. In the case of the deaf, we are expected to hear better. We are expected to go through painful surgery to do so. We are expected to pay through the nose to hear better and fit in with the norm. We are expected to organise everything around our access … because it’s all our fault.

Even with the NDIS we are expected to accept what is given. We are expected to do so in the name of sustainability. Currently if we have 65db loss in our better ear NDIS is trying to tell us they won’t help us. A 65 Db loss will mean we can’t hear speech and will struggle. No matter, our needs don’t count cos NDIS has to be sustainable. We, of course, have to adapt. Sorry folks, hearing life rules.

I have been ashamed of myself of late. I have been ashamed of myself because I have been grateful. I have been grateful for support. Grateful for money for interpreting. Grateful for money for captioning. Grateful for my job.

For a while I forgot my own value. I forgot what I contribute. I forgot how much knowledge and value people get from my experience and input. I forgot that I matter.

I began to make excuses for the people I worked with. I began to compromise too much. I began to accept mediocrity.

Worse,I began to make excuses for the appalling behaviour of others. I began to say things like …  “ … but they are so good and supportive of me.

I forgot just how good I am at my job and just how much people get from my input. I began to believe I needed others more than they me. The opposite was, in fact, the truth.

And then something changed. An advocate reminded me that everything needs to be reciprocal. He reminded me that it’s not just us that need to adapt but it is the non-disabled that must adapt too. He reminded me that it’s about co-design. This is where the world and systems should be designed with equal input from people with a disability. I already knew this but for a while I forgot because – “They are so good to me.”

And then they began to exclude. It is done in a subtle way. They would impose on me systems where I could not fully participate. They would insist on teleconferences. They would expect me to adapt. Indeed they expected me to arrange all access needs.

I didn’t matter .. I was a burden. If I wanted my knowledge and experience to count I had to do everything to ensure I could participate. No one else had any responsibility except me.

It came to a head when
I was interviewed for a temporary managers position. “8.30 am tomorrow Gaz” …

I waited for the boss to tell me that she had booked interpreters. It did not come. I sent the boss a rather sarcastic message … “ have you developed super powers of communication or have you booked interpreters for the interview?” She replied .., ” Please book interpreters.”

It was about there I knew I had no chance . Why? Because interviewing me was an after thought. If my boss truly valued me she would have made the interpreting arrangements herself.

I got really angry. I was angry because I was being undervalued. I was just an add on. An inconvenience that did not matter.

And then a colleague was treated unfairly. She had been treated unfairly for sometime. I made excuses for the perpetuator. ” … oh but she is so good to me”,  I would say.

I had begun to be grateful for being included. I began to think that I owed people. Well cop this. I owe people nothing. The knowledge that I have, very few people possess.. If communication issues exist it’s because two people can’t communicate and any strategy implemented is for everyone ..: not just for me. I owe people nothing.

I became something that I find abhorrent. I became a suck up. I was disgusted with myself.

Then and there I decided I could not condone the treatment of my colleague any longer. I wrote a long email to the powers that be outlining the abuse of power I had witnessed.

It was a healing and cleansing moment. But most of all I was able to support my colleague who had been badly treated. One must never be silent when they witness abuse of power. It must be challenged always.

Let me say this now for the final time. What I have to offer is of extreme value. That interpreters or captioning are needed is because two people can’t communicate .. not just me.

That means everyone must adapt and change. It should not just be me doing all the leg work.

That was my reawakening … I am back and I matter. I owe the world nothing. Watch out world.