Hello readers. I am here again. It’s kind of Deja Vu. As retirement beckons I have this overriding sense of DeJa Vu. I have worked the best part of 35 years campaigning, fighting and convincing the powers that be that life is not fair if you are Deaf, hard of hearing or have disability/s. I would like to look back and think, yeah its good, life is better now and feel an over-riding sense of achievement. Instead, I feel this incredibly oppressive sense of Deja Vu.

Melanie was on Facebook last week. She was having a moan. And good on her for that. But it’s sad that she is moaning about the same things that I was moaning about 15 to 20 years ago. (For the record, Melanie, I mean moaning in the nicest possible way.) Her moan was about cinema captioning. She started her moan with a question:

WHY CANT WE JUST WATCH A MOVIE WHENEVER WE FEEL LIKE!?

Indeed, why cant we? Melanie and her family had wanted to watch a movie at the cinema with captions. She has a Deaf husband, a Deaf child and they just wanted a night out as a family. Perhaps a quick stop at their favourite takeaway. Perhaps a little evening stroll while slurping an ice-cream on a warm evening. Maybe sitting on a park-bench together as the evening cools and the sun sets in an iridescent haze. Then to the movies, family time at its best. Something that families all over Australia enjoy on a regular basis.

Alas, wishful thinking if you are Deaf or hard of hearing in Australia in 2023. Melanie and her family had to travel more than forty minutes to see a movie. Unlike most people, because they are a Deaf family, they cant just rock up at their local cinema. They have to hunt through the newspapers or online to find a movie that is open captioned. If they are lucky, the cinema will have remembered to advertise that the session is open captioned.

And you know, most people have a choice of movies that they can watch. Hoyts are your best bet. They have Cinemas everywhere. Unfortunately, very few open- captioned options (I couldn’t find any today, this day 22/01/2023). You can try Eastland, Chadstone, Broadsmeadows, Forest Hills, Northlands etc etc – But today there are no open captioned sessions, none! Plenty of closed captions sessions with Captiview, yes of Craptiview fame, but no open captioned sessions.

Why would her family want to chance Craptiview. They would need three of the devices. She and her husband would need to set it up for themselves and their Deaf kid. What are the chances that the the cinema does not have enough devices? Or the devices are flat. Or the signal is crap. Or that their kids cant focus from device to screen. And that mandatory ice cold Coke or choc-top ice-cream, where do you put it when the device takes up the cup-holder. Nah, I fancy Melanie and her husband just said to themselves, “FUCK THAT“. If you want to see just how bad Craptiview can be, just watch this video. It was made in 2013, but from what I hear, nothing much has changed.

Since that time cinemas are now providing more Craptiview options. The problem is that most in the Deaf community loath it for all the reasons I have highlighted and that are shown in the video. They just want to go to a movie, any movie, close to home, sit back and enjoy it. They dont want to go to the ticket office, confess that they are Deaf, ask for the device, hand over their license as proof of ID and walk into the Cinema with these horrible and bulky devices. They just want to rock up and enjoy the movie!

To avoid the scourge of Craptiview they have to scour the Internet and newspapers in the hope of finding a movie that has open captions. THEN, they have to hope that the movies is one that they actually want to see. They have to hope that it’s a genre that they enjoy. In Melanie’s case they need to hope, also, that it’s family friendly and age appropriate for their kids. And then, if by chance they actually find a movie that they like, the likelihood is that they will have to travel an hour or more to get there, factoring in Melbourne’s appalling traffic and parking that comes at a premium and often at an exorbitant price. BUT WAIT, THERE IS MORE!!

Last year Thomas from Queensland entered the lottery to find an open captioned movie. Lucky Thomas, he found one! Alas, like Melanie, he had to travel 40 minutes to get there. Luckily, Thomas didn’t have a family to worry about. It was just for himself. Probably, knowing the Deaf community, Thomas let his Deaf friends know and his Deaf friends were going to meet him there. Open captioned movies being at a premium as they are, many in the Deaf community take what they can. Even if its a crap movie.

So Thomas went about his day. No doubt looking forward to the down-time he was about to experience at the movies. I fancy he was looking forward to catching up with Deaf Dick and Tracy too. Covid restrictions being gone as they are, we can actually meet people. At the appointed time, Thomas set out to the cinema. Braving the traffic and the elements as you do.

He arrived to meet his friends. Hugs and chatter all around. Tickets bought, into the movies they went. No captions, WTF! It was advertised. Thomas and his friends had come all this way for nothing! Angry, they seek out the manager only to be told that there are no captions. Why? Because the cinema had been sent the wrong caption file. FUCK!

This is what Deaf and hard of hearing people all over Australia have to endure everyday for the simple pleasure of watching a movie at the cinema. Is it any wonder many, myself included, have simply given up the ghost and prefer the comfort of our own home and streaming options like Netflix and Stan. We have become hermits, rarely venturing from the comfort of our armchairs because it is just not worth it.

And for me its Deja Vu. I was among the many who campaigned hard for better cinema access for Deaf and hard of hearing people. We started in the early 2000’s campaigning hard for many years. We fought the cinemas, the Government and even each other. (My wife famously got told, very publicly on Facebook, to shut up in a debate over Craptiview.) Some of us thought Craptiview was better than nothing. Others, like myself, thought Craptiview unacceptable and wanted more access to open captions more often and at more cinemas.

We fought the good fight for many years. We attended meetings. We negotiated with cinemas. We sat on Government committees commissioned by the Government and met in Canberra. Hell, we even joined forces with our friends in the Blind community in campaigning for Audio Description for the Blind. We set up the Action on Cinema Access Facebook page. We worked hard!

We did so with high hopes that future generations would have better access than we did. The gains have been marginal. The problems of access, the problems of choice and the tyranny of distance are still there. And Craptiview is still crap. And when Melanie and Thomas post on Facebook about the very barriers we fought so hard to break down, there is an overwhelming sense of Deja Vu!

Never mind, there is Netflix and retirement that beckons for me. As for the younger generation, the fight continues. And fight you must because it is just not fair. My advise to this younger generation is be prepared for the Deja Vu because the hearing community, particularly big business, are not well known for their empathy and willingness to change! Good luck, I’ll watch you all keenly in my retirement!

T’was the night before Christmas and all through the house
Deaf people were stressing, it’s far from grouse
The hearing coming, deaf slumped in a chair
Lipreading, socialising, its really not fair ….

Christmas is a time to be jolly. It is a time to sit back and relax. It is when you catch up with family and share the love. A tipple or two is to be had. The diet goes out the window. Hugs and kisses abound. It’s a great time for many, but Xmas often highlights awkward social issues and compounds them. This is especially so if you are deaf. “While the cheer and gatherings of the holidays are a welcome break for many, some find this time more difficult. For those in the Deaf community, the holidays amplify existing challenges.” Pfieffer, 2020..

For me, 2022 was quite a tough year. It began with so much promise. I was leading a team of very dedicated advocates. One other, whom I was not leading, was deaf too. I felt I belonged and was enjoying the role immensely. And then it happened, as it often does within an organisation designed for people with a disability. An abelist and non disabled person spoils it. To cut a long story short, when I complained about the appalling behaviour of this person to the Board, that person turned on me. Gaslighting and victimisation ensued.

“Screw this ..” I said to my wife. At 57 I just wanted to enjoy my work. I tendered my resignation, with her full support. The Board didn’t want to accept my resignation. I said to them that I was willing to reconsider but under no circumstances would I continue to work with this person. The Board had no choice really, they accepted my resignation.

Before my last day at this organisation, I had found another job. I had two jobs to choose from but the one I chose allowed me to return back to my roots and work with the Deaf community again. I am loving it, but come Xmas I was tired. It had been over a year since I’d had a proper holiday. I was looking forward to a break at our holiday home in Adelaide. In fact, I was craving the break. My expectations for a relaxing break were high.

It is fair to say that both my wife and I were exhausted last year. Working in human services can sometimes take its toll. People you are assisting are often going through difficult times. The behaviour and support of these people needs careful consideration and management. Human suffering or stress can be difficult to experience. It’s not always possible to remain untouched by it.

I am sure I speak for many in this area when I say dealing with the trauma of others can be draining. In a year I have experienced other peoples depression, suicide attempts, family break ups, deaths and cost of living trauma. Human services workers are not made of Teflon, it sticks sometimes. Hence, I am sure many of my colleagues in this area, including my wife, were hanging out for the break.

But for my wife and I that break involved Xmas gatherings of of mostly hearing people of which she and I were the only deaf people. We were both looking forward to it, but it is fair to say we had a fair amount of anxiety and apprehension about what we were about to confront.

We arrived in Adelaide on the 22nd December. Unfortunately, the people who had been renting our house short-term left a mess. We had been hoping that we could just wind down and relax. Alas no, we had to clean up the house as quickly as we could before our ‘hearing’ guests arrived. This was stress we could have done without.

Our first guests were my wife’s family. They are all wonderful people. They came for drinks on Xmas Eve. It’s fair to say that my wife and I were buggered having spent the best part of the day cleaning up and taking rubbish to the tip. Our defenses were pretty low. We all sat outside on the balcony and the conversation was rapid. Following the conversation was hard work. After about an hour I just wanted to crawl into bed. I looked over at my wife and I fancy she was feeling just the same.

This year was different from years gone by. I had an iPad with voice to text technology. It is very good and very accurate. I turned it on and tried my best to pick up the gist of the conversation. The technology is not designed for rapid fire conversations. Of course, with a social gathering there is never one conversation. To the left a couple of people might be talking about theatre. Across the table they were talking about Covid, to my right it seemed they were talking about sunsets and the beaches. All of this was coming up in text at the same time. It wasn’t perfect but I managed to join in bits and pieces of the conversation.

Not so long ago this would not have been possible. What I used to do is find someone who was easy to lipread and try to chat with them. Inevitably after a time that person would tire of just me and seek out others. As I got older, rather than make the effort, I just withdrew. I would find a quiet corner with my beer and hope that people would ignore me. Alas, this rarely happened. Some kind soul, seeing me on my own, would come over and try to chat. Often these kind souls are really hard to lipread. Conversations would be difficult and halting. It will surprise no one that I and my wife are often the first to leave these hearing gatherings. The exhaustion and effort is often just too much.

Christmas Day arrived. Being chief cook, I was up early preparing the food. My wife joined me and this was sort of the calm before the storm. My adult kids woke up and my eldest arrived with his partner and step-son. It was fun. My kids are obviously deaf aware. We began to open presents and then my sister arrived early to help.

That was fine. She is easy to lipread as is my brother in-law, John. Then everyone else began to arrive. My nephews and their partners. Suddenly the house was full of chatter as the ‘hearing’ greeted each other. I looked over at my wife, she seemed to be in a mild panic. “What’s up?” I asked. She said she was feeling overwhelmed. I tried to reassure her but if I am honest, I was feeling exactly the same.

These situations give rise to a lot of social anxiety. Society has these unwritten rules of conformity. We had guests in our house. It is our job to make them feel welcome. It is our job to show an interest in them. It is expected and my wife and I are acutely aware of this.

But it is hard. Everyone is chatting. You have no clue what they are talking about. How do you interrupt? How do you join a conversation when you don’t know what people are talking about? I look around and people greet me and smile at me. Sometimes they say something and I have no idea what they have said. I often pretend that I do. It’s awkward and it is stressful. But I had my iPad, it would be different this year. But fuck! It was flat and I had to charge it so first hour was a complete blur. (Not helped by the fact that I mucked up the turkey.)

I looked around for my wife. She had taken herself outside. She was with a small group that included my brother in-law. I joined them. The chaos of conversation inside had worn me out. Later my wife was to tell me that she was so thankful for John. He is laid back and makes sure you understand him. He helped her to relax. I spent a fair bit of time out there with them too. So exhausted and stressed was I, that I didn’t even have anything to eat!

Later my iPad charged and I went inside and had some conversations and mingled. I couldn’t catch everything with the iPad but I managed to find out what people were talking about. Holiday homes, wine, dogs, sick family members, work, music, Melbourne vs Adelaide – Just lots of random stuff. It was actually brilliant having them all there and after a time I began to enjoy myself. When they all left I was kind of sad but also thankful. I was spent.

And that was the pattern for the whole holiday. New Years Eve was spent with my sister in-law and her partners family. It was lovely and they made us feel very welcome. This time I remembered to charge the iPad. This being a smaller gathering, it was easier to get involved. A retired ophthalmologist was talking shop and it was fascinating. My sister in-laws partner was talking single malt whisky. Her partners mother was chatting about the loathsome Scott Morrison and the equally loathsome Royal Family. Before the technology, I would have had no clue.

There were a couple there that I met for the first time. They were fascinated with the iPad technology. They asked me how long I had been deaf, except the caption came up as dead. I said that I was very much alive. They look confused and I explained that the caption had come up as dead instead of deaf. Laughter all round.

Later my wife and I retreated to the kitchen and just sat together. A week of communicating and concentrating had caught up with us and we needed a little time out. I apologized to the host for being so unsociable. The host said not to worry, she understood that for us the communication was hard work and told us to take all the time that we needed. I thanked her. The empathy was very much appreciated.

And that was my Xmas. It was great to see everyone. It may not seem it, but I really did enjoy catching up with them all. But it is hard work. These gatherings give rise to a lot of anxiety and they wear me out. This is what it is like for many deaf people the world over who have to fit in to a hearing world.

It’s bittersweet. Returning to work can be almost respite.

I think the deafness affects me more than I realise; I think it makes me more tired. I loathe parties. I attend, smile and leave.

Stephanie Beacham