The best we can with what we know

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Al McEwin

With Alastair McEwin, Breda Carty in background.

Last week Alastair McEwin started his new job. He is Australia’s new Disability Discrimination Commissioner. And he’s deaf. He was born deaf, into a hearing family. He speaks and he uses Auslan, he’s bilingual.

In the past year or two we have seen a number of other deaf people take up high level roles: Dean Barton Smith as CEO of Deaf Children Australia, Leonie Jackson as CEO of the Deaf Society of NSW, Rebecca Adam as interim CEO of the WA Deaf Society. They join Matthew Wright CEO of Australian Federation of Disability Organisations, Kyle Miers CEO of Deaf Australia, Brett Casey CEO of Deaf Services QLD, and Colin Allen volunteer President of the World Federation of the Deaf, who have all been in their positions longer.

Deaf Australia’s CEOs and the WFD’s Presidents have always been deaf people, and AFDO’s CEOs have always been people with a disability, but the other organisations have always had non-deaf CEOs until now. And many in the deaf community have been highly critical of the ongoing failure to appoint deaf people to high level positions, especially in deaf community organisations.

Things are changing now and it’s so exciting.

Of course, many things have been changing for a long time. It’s been slow, but things have changed.

Last year at our annual Christmas-time lunch, my friends Breda and Maree and I were discussing deaf community issues and Breda commented on how much things have changed in the past twenty years.

I said, “Yes, but twenty years is an effing long time!” and for some reason we all found that very funny.

When I went to university in the 1970s I was the only deaf person there, no one had any idea what to do with me and there were no support services. Support services started appearing in universities in the 1980s, an initiative of the late Des Power at Griffith University in Brisbane that was slowly taken up by other universities nationally, and deaf university students now are generally well supported. Of our new high flyers, Alastair, Brett and Rebecca all have law degrees, Leonie has an education degree, Dean has a marketing degree, Kyle has a leadership and development degree and Matthew has an arts and human resources degree.

When I became Executive Officer of Deaf Australia in 2001, following in the footsteps of Brett Casey and Carol-lee Aquiline, there were no deaf CEOs elsewhere in Australia. Hearing people were sceptical of deaf people’s ability to lead and to manage organisations.

One day in 2003, soon after we moved the Deaf Australia Sydney office to the RIDBC campus at North Rocks, a hearing teacher at one of the RIDBC schools wandered in to see what we were all about. I was not in the office and one of my staff, Natalie, talked to her. The teacher asked if Natalie was deaf and when she said, “Yes, we are all deaf,” the teacher seemed amazed. The question was asked a number of times in disbelief. For our part, Natalie and I were shocked that someone who taught deaf children could have such a poor opinion of our abilities.

But deaf people too are not always supportive.

There is a breed of deaf person who looks at deaf achievers and turns up their noses and signs dismissively, “Oh, you’re clever!”

The implication is: “You’re not one of us!”

There is a breed of deaf person who looks at deaf achievers and relentlessly criticises every minor mistake –  real, imagined, misinterpreted or misunderstood.

There is a breed of deaf person who, when a deaf achiever does something this breed doesn’t like, decides never to forgive them. This one thing then cancels out or at least taints every good thing the achiever does.

There is a breed of deaf person who has been indoctrinated to believe, often subconsciously, that hearing is better than deaf and therefore no deaf person can ever really be successful.

And there are people like me and my friend Gaye who, when one of these achievers was appointed, looked at each other and said, “That’s so great! But do you think they are the right person for that job?”

And then we looked at each other again and said, “We’re always saying deaf people should be appointed to these jobs. Now we’ve got one and we’re doubtful! Let’s just shut up and give them a go!”

And this, my friends, is what I sincerely believe we all need to do. Give each other a go!

There is a lot of negativity in the deaf community. And a lot of this negativity is there because it’s what we’ve been taught and how we’ve been treated in a world overwhelmingly designed for and lead by people who hear and know nothing much about deaf people. It’s what we know. 

But there’s also a lot of good people and a lot of positivity in the deaf community. It’s time to build on that.

It’s time to stop cutting down the tall poppies. It’s time to put aside doubts and jealousy and grudges and support each other to do the best we can.

Of course, there are a lot of deaf achievers at all levels and in all walks of life. In education and academia, in the trades, the law, the arts, in sports. But it’s the leaders, the CEOs and the publicly prominent who seem to cop the most flack.

The Australian deaf community started changing rapidly in the 1980s and early 1990s. This was the decade when the welfare and interpreting roles were split into two separate professions, when Auslan was recognised as a real language and given a name and a dictionary by Trevor Johnston, when Deaf Australia (then known as Australian Association of the Deaf) was established to lead and represent deaf people and modern deaf advocates began emerging, when TAFE and universities began providing support services, when Deaf Studies was introduced by Breda Carty and we all learned more about ourselves and our community, when Australian Theatre of the Deaf was formed and began bringing Auslan and deaf stories to us and the masses. And so much more. It was a truly vibrant time to be part of the deaf community.

Those of us who were part of that era did what we could with what we had. Many of us didn’t have all the skills and experience we needed for the roles we took on, either voluntarily or paid, but we believed in ourselves, each other and our cause, we learned on the job and acquired skills and qualifications along the way.  The work we did back then paved the way for today’s achievers.

I’m so proud of what we achieved back then and in the years since. And I’m so proud of today’s achievers. They are paving the way for tomorrow’s achievers.

One of my mantras for life is: we all do the best we can with what we know at the time.

What we know changes as we learn and grow. What we did yesterday we might do differently today but it doesn’t mean that what we did yesterday was wrong or not good enough. It was the best we could do with what we knew at the time.

So let’s stand by today’s achievers and support them.

Let’s give them the space and the grace to learn and grow and do the best they can for us with what they know at the time. We will, I am sure, be richly rewarded and our community will also learn and grow and breed new achievers to do even better with what they know.

When we support achievers in our community we all benefit from their achievements.

Smoky Blue Mountains

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Three Sisters

After our night out in Sydney, we sleep in while the family gets up early and goes to Sydney for another day at the festival. John and I want to see more of the mountains and we’ve had enough of the trek up and down the mountain. I can’t imagine how so many people who live here manage to make that journey to work day after day.

Breda has suggested we might find Wentworth Falls and Leura worth a visit.

Wentworth Falls is small but busy, with interesting antique and home décor stores that give me ideas for things I could make. In a second-hand bookshop I pounce upon a pile of old knitting patterns and am thrilled to find a few worth buying. They are unbelievably good value.

We find a bakery for lunch and soon realise we have chanced upon what seems to be the local meeting place. It’s crowded. People stand around chatting, blithely blocking the counter queue and the aisles between tables. They all seem so excited to have run into each other. John tells the staff the pies are excellent and he will come back.

We drive on to Katoomba. In the 1980s a workmate lived here in a little house on a back street down near the Three Sisters and I once got the train up to spend a weekend with her, walking from the station to her house, my overnight bag getting progressively heavier. As we drive through town I think of her and wonder where she and her children are now. Later, at Willoughby, I ask Marg about her, she still sees her often.

It’s Saturday and Katoomba too is busy. Down near the Three Sisters, tourist buses line the kerbs and people wander everywhere. ‘Hazard reduction’ burnoffs are happening here, we can’t see the mountains for smoke and I doubt anyone can actually see the Three Sisters. Crazy people wander about in the smoke, breathing it in. It’s definitely not the best day to sightsee in the Blue Mountains but if I were a tourist and today were the only day I had here, I guess I too might be wandering around in the smoke trying to see as much as I could.

We take the scenic route to Leura. But we can’t see a scenic thing. The trees and the road are blanketed by smoke and John drives slowly. It’s looking like we won’t be exploring Leura, there’s too much smoke, but when we drive into the village, the air is remarkably clear. It’s a miracle!

Leura is a pretty town. Its main street has gardens down the middle and lots of interesting, if somewhat expensive, shops. We find a citrus scented candle as a small gift for our hosts, the makings of dinner at the local supermarket, and some exquisite chocolate for dessert in a gourmet chocolate shop. Back home John takes over the kitchen and has dinner simmering on the stove when our friends return home from a successful day in Sydney.  John says food always tastes better when someone else cooks it.

Breda has enjoyed browsing the festival bookshop and has brought home some fabulous books. There is even one for me, an early birthday present, about writing. I read it back home in Brisbane and, together with my earlier conversations in Armidale with Ginny and Rod, it helps me break through my writer’s block.

After dinner we play Trivial Pursuit in front of the fire that Rowan has built. His Scouting days have been useful. Some discussion is required on how to divide up the teams and we eventually settle on boys versus girls. Since there are two of us and three of them, Breda and I declare that we reserve the right to phone a friend. The boys aren’t too happy, so we agree to use it only for music-related questions since we’re both deaf and can’t, we reason, possibly be expected to know those answers. And twice we don’t know the answers to questions about songs and we text Maree.

The boys do well but girl power wins! We probably overdo the high fives in our delight with ourselves and Maree.

“It’s only a game!” say the boys.

“Of course it’s only a game,” we agree. High five!

There’s a local farmer’s market on Sunday morning. The family buy provisions and I stop at a stall selling waxed gingham, where a woman shows me how to use and reuse it in place of cling wrap.  I hand over $25 for a 3-piece pack and as we walk away John tells me I got sucked in again. True. It was ridiculously expensive. I could probably learn how to make it for a few dollars but I figure I’ve supported a locally based environmentally friendly cottage business and that’s a good thing isn’t it?

Leaving Cameron and Rowan to enjoy the markets, Breda, John and I set off for Blackheath. On the way we stop to browse a row of antique shops, one in particular has a huge range of goods including more old knitting patterns that John points out. I’m in heaven, two days in a row!  John finds a lovely old lidded serving bowl that is perfect for one of his specialities, mushy peas. Breda excitedly waves me over to an amazing find: a large collection of old sewing materials including a Singer sewing machine, buttons, thread, crochet cotton, trims, and all sorts of period clothes.

At Blackheath we go first to look at Govett’s Leap. I’ve never been this far up the mountains nor seen Govett’s Leap. It’s breathtaking. http://www.blackheath-nsw.com/Govetts_Leap.html

Breda gives us a little education on bushfires. Down below us is the Grose Valley. At the bottom, far away and unseen, is the Grose River. When there’s fire in the Grose Valley they generally leave it, it’s too hard for firefighters to get in there. But in the October 2013 bushfires, when fire in the Grose Valley threatened to join up with the Springwood fires, a frightening possibility, they did go in and backburned in the Grose Valley to set a firebreak between the two fires. I get goose bumps listening to her. As beautiful as the mountains are, I doubt that I could live in such a notorious fire zone.

We wander around Blackheath village and check out the cafes for lunch, finally settling on a café in what would have once been the foyer of the old picture theatre. Inside is a massive antique store. John spends ages in there while Breda and I walk down the street to check out a craft market, returning to browse the antiques.

Before leaving home this morning I declared I wanted to stop on the way home and have a drink on the terrace overlooking the mountains at the Hydro Majestic Hotel in Medlow Bath. But I change my mind. Breda and John are flexible. We go instead to see the Three Sisters. John and I have both seen them on other occasions, but Breda declares she will not feel she has done her hosting duties until we have been to see them. She wants to convince John that the Blue Mountains are more than just rocks and trees.

There is still smoke in a part of the vast Jamison Valley but mostly the mountains are clear today and we get a wonderful view of the valley and its famous rock formations. We take our time admiring it all. http://www.bluemts.com.au/info/thingstodo/threesisters/

Over the past few days Breda has been telling me about the trails in the mountains, and the people who regularly walk and run them, in particular an annual run that finishes at night with runners climbing a long set of stairs from the valley up the side of the mountain. She showed me a spectacular photo of a string of lights curving along the mountainside, runners with their headlamps shining in the dark. Now she points out where the paths and stairs are, although we can’t actually see them from here.

Beside me, John gazes out at the view. He’s quiet. I look at him and say, “It is pretty impressive isn’t it? Govett’s Leap and this.”

And finally he admits it is. It’s not just rocks and trees.

That evening, John and I enjoy a gin and tonic that Cameron has made for us while we watch television. As always, Taffy stands beside me, her chin on my knee for a long pat. She’s older now, more mellow, and now when I say and sign, “finished, go,” she goes. Cameron works in the study, Rowan reads on the couch and in the kitchen Breda cooks up a storm for dinner.

Tomorrow we are leaving these majestic mountains. Tonight we enjoy once more the conviviality of these dear friends in this warm and loving home.

We will return!

Writers, artists, rocks and trees

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Sydney Harbour Bridge

John and I leave Armidale early in the morning, heading south. The day before, on our drive through Uralla, Ginny pointed out Moons Bakery, open from 4.00am and a truckies’ favourite. But it’s still too early for us to think about food.

The roads are quiet and we make good time. We pass through Murrurundi and hit racehorse country. The vast Emirates Park, with a picture of a horse and jockey on its stone gateway, has black post and rail fences. I’m surprised. Aren’t these fences usually white? What’s with this rebellious black?

We come into Singleton in the Hunter Valley and see coal trains and power stations. From Singleton we take Putty Road to Windsor, through the mountains and forest, a quiet narrow two-way road with little traffic.

The road seems to go on forever, up and down mountains, winding and straightening out and winding again, with beautiful views over the mountains. We are in the Hawkesbury Valley now. Finally we come into Windsor and stop at nearby Richmond for a break. It was a beautiful drive for me but exhausting for John.

Still, as Breda and I later agree, rather this quiet endless road than the racetrack that is the Pacific motorway into Sydney.

From Richmond to Springwood in the Blue Mountains we take Hawkesbury Road up the mountain on hairpin bends, it’s breathtaking. We pull into a lookout and through the smoke haze see Sydney’s towers in the distance.

I’ve been to Springwood many times. When I worked for Deaf Australia, I often stayed here with Breda and Cameron, getting the 7.30am train to Sydney each day with Breda, but John hasn’t been here before.

We drive around looking for a supermarket, I know there is one on the main street but I can’t seem to see it. Eventually we find one on a back street but the shelves are almost completely bare, as if there is some impending disaster and everyone has raided the shop. We’ve never seen a supermarket like this. What’s going on? Later Cameron tells us he’s surprised the store is still open, it’s been going out of business for months. He also tells us where the other supermarket is and I can’t believe I missed it.

After managing to find some supplies to contribute to the household pantry, we find Cameron, Taffy the dog and Kasha the host student at home. Breda isn’t due home for a few hours and Rowan has just left for work, delivering pizzas in this his gap year.

The back deck is the perfect place for a late afternoon tea. I love this house, it’s very Breda and Cameron and it backs onto the Blue Mountains national park with wonderful peaceful views of mountains, trees and changing light. Today we have a glorious pink sunset.

I’ve previously met Kasha when talking with Breda on Skype, and it’s good to meet him in person. He boards here for school terms but is going home for an extended weekend. Deaf community families often have deaf students boarding with them like this so they can attend a school that best suits them. We chat about school and home, he seems a nice, friendly, confident teenager. It always gives me hope, for deaf people, for the deaf community and the future, when I chat like this in Auslan with young deaf people.

This is a bilingual household where everyone uses both English and Auslan to varying degrees of fluency. Breda, Kasha and I are deaf, Cameron, Rowan and John are hearing. No one gets excluded and conversation is wide-ranging and animated.

Kasha leaves early next morning and Breda, John and I get an early train down to Sydney, leaving Cameron to work at home on his video productions.

We are going to the Sydney Writers’ Festival, a major reason John and I have made this trip.

Breda and I had been so excited to learn the organisers would provide some interpreted sessions. Two keynotes and a couple more, they said. We interpreted this optimistically and pored over the program, sending in our list.

Oh no, came the reply. All sessions in one venue are being live captioned, so they really could only stretch to a total of three interpreted sessions in addition to the two high-profile keynotes.

Over four days!

Most of the festival program is free but the captioned sessions have an entrance fee. We are so disappointed. But still, we are going. But only to the free sessions. Why should we have to pay for access? Other people at the festival don’t have to.

Today’s interpreted session is about history writing. Breda enjoys it. Although history interests me, I struggle to stay awake. John is unimpressed.

Breda goes to work and John and I stroll along the waterfront from Walsh Bay, under the Harbour Bridge towards Circular Quay. There is a cruise ship in port and everything looks so splendid: the sparkling water, the big white ship, the Opera House, Circular Quay with its ferries and background of skyscrapers. We stop at the Rocks for lunch at the Munich Brauhaus before catching a ferry to Watson’s Bay – because it’s the next one leaving and because being on a boat on the harbour is my number one thing to do in Sydney. Some smoke from burnoffs in the mountains hangs over the harbour but it’s a beautiful sunny day and we drink it in, standing in the boat’s prow, the wind in our hair.

In the 1980s I lived for a year at Neutral Bay and worked at the University of NSW, getting a ferry and a bus to work each day. In the winter dark I’d often sit out on the ferry deck on the trip home, rugged up against the cold, looking at the city lights, the Harbour Bridge, the Opera House, and the clear night skies and watching the seagulls flying along beside the boat, and I’d fall in love all over again with this glorious harbour.

To paraphrase Samuel Johnson, anyone tired of Sydney Harbour is tired of life.

We get the 2.48pm train back to Springwood. I want John to see how spectacular the mountains are in the late afternoon light, but he falls asleep!

“It’s just rocks and trees!” he says. “It’s not like it’s Niagara Falls!”

Next morning, while everyone else works, John and I drive to Faulconbridge, the next town up the mountain, and visit the Norman Lindsay Gallery. http://www.normanlindsay.com.au/

Wandering through the gallery, admiring the incredible art, mostly of nudes, John turns to me and says, “This bloke was a sex maniac!” But he’s impressed.

Lindsay’s talent was very broad: drawing, painting watercolours and oils, etching, sculpture, writing and even model ship building.

The gallery is in the house where he lived. It’s a lovely white sandstone house with big rooms and high ceilings, verandas with columns, a grape arbor along one side, and a large detached kitchen connected to the house by an enclosed walkway with sculpture courtyards on either side. In the grounds are sculptures, fountains, a painting studio, an etching studio and a café. This artist was surely not impoverished.

We take the path down to the swimming pool at the edge of the bush. It is empty of water and a little overgrown with grass but it’s easy to imagine how magnificent it was in its heyday. It is enormous, the concrete edge on the opposite side looking out over the mountains like an infinity pool. Beside the steps down to it are curved stone terraces like an ancient amphitheatre.

“Imagine how many people might have sat here watching the goings-on in the pool!” John comments.

We catch an early afternoon train down to Sydney where I meet up with Breda at Walsh Bay for the second interpreted Writers’ Festival session. John goes off to do his own thing for an hour, he’s had enough, he says, of writers pontificating.

Breda and I both enjoy this session, especially Don Watson talking about how management-speak (‘agile’, ‘impact’) is taking over our everyday use of language. We duck out a little early to dash for the train at Circular Quay, via what feels like a million stairs through the Rocks.

At Town Hall we weave our way through the crowds outside, to find our seats to see Gloria Steinem in conversation with Jennifer Byrne. John and several deaf people are already there and Cameron joins us soon after.

We have front row seats, reserved because we need to be able to see the Auslan interpreter. Being deaf does on occasion come with extra benefits – and it doesn’t hurt our hearing partners either!

Sydney Town Hall is magnificent, with soaring organ pipes, a gallery above, leadlight and beautifully ornate embellishments. Tonight it is packed. This event has sold out.

Gloria Steinem is inspiring. Even John is engrossed. She talks about her latest book, My life on the road; her childhood with a father who packed the family into the car each year, moving them to a new place; and her own choice as an adult to spend a lot of time on the road, meeting, listening to and working with people.

Afterwards Breda, Sofya and I buy her book and join a long queue. Ahead of me I see Yvonne, a woman I knew many years ago when I lived in Sydney. I catch her eye, she excuses herself from her friends, and we catch up while the queue slowly moves us towards the marvellous Ms Steinem, who signs my book and smiles when I say and sign ‘thank you’.

Across the road we join the rest of our group at a restaurant in the resplendent Queen Victoria Building. Champagne is poured and we drink in celebration with Alastair McEwin, on his appointment as the new Disability Discrimination Commissioner, which he is due to take up in July. We are all so excited to see one of our own take on this influential role.

But Al is still Al, this guy from Adelaide we’ve known for so many years, still making us laugh. We tell him he’s going to have to watch himself now, people will be watching him.

It’s a deaf community goodnight – the “long goodbye” – and we have to run for the train but we make it home just before midnight.

It’s been a great night. All these people I’ve not seen for a while, Gloria Steinem’s enthusiasm for life at 82 and the promise for the future that Al’s appointment brings, fill me with optimism.

Autumn in Armidale

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Gostwyck Chapel

Gostwyck Chapel

Travel isn’t just about the places we go. It’s also about the people we meet and the friends we visit along the way.

Two years after retiring from full time work, I am missing the travel and the opportunities to catch up with interstate friends that were a bonus of my job for 13 years. So when John takes a redundancy and we plan our first short trip, it is mostly about catching up with friends in NSW we haven’t seen for a while.

Our first destination is Armidale.

We drive out of Brisbane on a warm May morning and through the stunning Cunningham’s Gap to the New England highway at a pace that is apparently leisurely. We’re mostly driving at the speed limit, but maniacs come up swiftly and sit on our tail, so sometimes when they take too long to overtake John pulls over to let them pass. That first day sets the tone for the rest of our road trip.

“Bye bye, have a nice day,” I say, waving below dashboard level, as cars speed past us.

“You’ve got to make good karma,” I say to John. “There’s no point getting cranky with them.”

Soon he too is waving. “Bye bye, have a nice day!”

We’d planned to have a few stops along the way with a leisurely look around towns we pass through, but a later than planned start changes this. We stop only for lunch and a legs stretch in Stanthorpe.

Late afternoon we are sitting at Ginny and Rod’s dining table in Armidale scoffing champagne and cheese. Eddie is at uni in Sydney and Mickey is in his room after a hello hug. I love Armidale, it reminds me a little of England and the late autumn colours don’t disappoint. I always expect it to be cold but it is warmer than our last visit, in April last year.

Still, we’re Queenslanders so the heaters are on and the house is warm as we look out onto the chilly front garden and watch the neighbour’s young children play on their bikes in the street, it’s a cul-de-sac, quiet and safe. As the evening progresses, we get hot and start opening windows.

Over dinner the talk roams over politics, journalists, family, books, the parlous state of Armidale’s economy and its University, writing and reminiscing: Ginny and I have been friends a long time, since 1979 when we studied together for our Post Graduate Diploma in Librarianship at the University of NSW.

My favourite story of the night is one Ginny tells about one of Rod’s children from his first marriage visiting one day many years ago to sit him down and tell him that everything is his fault.

“I was trying not to listen,” Ginny says, “but then I walked past the door and peeked in and noticed Rod was asleep!”

“It was boring!” Rod declares.

I am full of admiration for his dispassion.

I’m the only deaf person in the group and no one signs fluently. But everyone includes me and does their best to make it easier for me to lipread them. When we get stuck John helps out with a bit of sign language.

Ginny and Rod are always a great source of food for thought. When we mention how entertaining we find David Marr’s and Gerard Henderson’s verbal sparring on ABC TV’s Sunday morning Insiders, Rod comments that David Marr doesn’t understand working people and you don’t have to scratch him very far to find the bourgeois.  He gives me a copy of Marr’s Quarterly Essay on Bill Shorten and emails me a copy of his unpublished response to it. Both, when I read them back in Brisbane, are educational and intellectually challenging.

But Rod can be difficult to lipread, and I don’t have to always be the centre of attention, so sometimes I give us all a break and leave him and John to chat, John loves talking politics with Rod, who once worked for Gough Whitlam, one of John’s heroes. He gives John a signed copy of A Certain Grandeur: Gough Whitlam in Politics.

In the morning we have brunch at a trendy café and wander around the centre of town, admiring the beautiful old buildings, shocked by the staggering number of empty shops. Whole arcades are empty. We walk past Barnaby Joyce’s electoral office and the men make jokes about Deputy Dawg that go over my head.

We check out Rod’s favourite second hand bookshop, chockful of books often hard to find. Rod tells me this is because academics leaving town offload their large collections here. I buy a hardback How tea cosies changed the world.  Later, in Springwood, when I show this marvellous book to Breda she asks me to make her a quirky tea cosy for her next birthday.

Rod drives us south to Uralla, where on last year’s visit we wandered around the antique shops and I bought a lovely old soup tureen that John doesn’t like because it’s green. From there we take a narrow road through rolling drought-brown pastureland to the tiny Gostwyck Chapel, built as a memorial to a fallen WW1 solider, at a fork in the road and surrounded by beautiful old elm trees. The chapel is lovely and I’m disappointed it’s closed, I love old churches. We wander over to a nearby creek, across its dry bed, and back over its rustic white wooden bridge. In the distance we see Deeargee woolshed, it’s massive. http://www.uralla.com/gostwyck-chapel-deeargee-woolshed-60.html

Back in the car we drive through farm properties sparsely populated with sheep, back to Armidale and out to the University of New England. Ginny and Eddie both did their Bachelor degrees here a generation apart.

We wander across the campus to Booloominbah House, once a White family homestead and now the campus administration building. http://www.une.edu.au/campus-life/campus-information/booloominbah-historic-house

Another White family homestead, with fascinating stories attached to it, which we have previously twice admired is Saumarez, out near the airport. http://www.visitnsw.com/destinations/country-nsw/armidale-area/armidale/attractions/saumarez-homestead

Over afternoon tea at Booloominbah we wonder what will happen to this imposing old building and its once thriving university, which now seems in its death throes. There are few students to be seen and, Ginny tells us, fewer staff, the tennis courts we walked past are unkempt and the whole place feels deserted and sad. It should feel full of life, a place where things are happening, where young minds are dreaming of how they will change the world.

That night we have dinner at the recently refurbished historic New England Hotel (Peter Allen sang here), snug and warm near the fire. Afterwards we wander up the street to a café/bar for coffee and dessert, with Ginny pointing out buildings and telling me stories from her youth here.

The bar is deserted and the bartender tells us we can’t have coffee, they’ve just shut down the machine and are closing early because there wasn’t much custom.

Ginny is incensed. “We’re customers!” she tells him as the rest of us walk out. “You’re going to go the way of other businesses here if this is how you operate!” She joins us outside and indignantly tells me what she has just said, adding sadly, “It’s contagious!”

We go home and finish off last night’s chocolates with coffee. I feel so sad for Ginny that this town she has always loved so much and to which she and Rod moved the family three years ago, is doing so poorly. We talk about their plans to leave this place and start again somewhere new. There is hope of better times and my spirit feels replenished by this time spent with these much loved friends.

John and I drive out of Armidale early next morning, bound for Springwood in the Blue Mountains. As I look at the last of the autumn leaves I hope fervently that next time we visit (as we surely will, it’s on a major highway) things will be looking up for this lovely New England town.

Checkout Chats

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IMG_7251

Some people love shopping. Some don’t.

My mother loves shopping. She likes to take her time to browse and compare before making a decision, and she likes to just look at what’s on offer, with no intention to buy.

My father is the opposite. He likes to know what he wants and where to get it before he leaves home. Then he likes to go into the shop, find the item and get out of there as quickly as possible.

I take after my father when it comes to shopping.

Like my mother, my husband John loves shopping. So when my parents visit us or we visit them in North Queensland, John and Mum do the shopping while Dad and I stay home and everyone is happy.

But shopping is not just about finding the items you want. It’s also about the chats at the checkout.

John and my mother seem to enjoy chatting with the checkout staff. Sometimes I do too. It depends.

I’ve had some great chats in shoe shops. Perhaps because, unless we buy our shoes in self-serve shops like Big W, it’s hard to buy shoes without having some kind of discussion with the attendant, so by the time we get to the checkout, we’ve sorted out a way to communicate.

But checkout chats in supermarkets? Give me a break!

When I was young, grocery stores didn’t sell the wide range of things they do now, so we went to a number of other stores as well: the butcher, baker, greengrocer, chemist.

One Saturday morning in 1980 in one of the various flat-shares I lived in for many years in Sydney, it was my turn to do the shopping. Over breakfast with my flatmate I had a whinge about having to go to the butcher. Our butcher was always crowded so they had a system where you gave your order to a butcher who packaged it and took it to the cashier who then called you. It was very stressful for me. There was usually a queue at the cashier so even if I watched my butcher carefully the cashier didn’t always call me as soon as he gave her my package.

Secretly I hoped my hearing flatmate would offer to go to the butcher for me. But she was, and still is, a wonderful friend who never patronised me. She looked at me and calmly said, “Go to the supermarket.”

Ah! Why hadn’t I thought of that? Supermarkets had only recently started selling meat and that was the day I abandoned the butcher for the easier self-serve supermarket.

Shopping in supermarkets was a boon for deaf people for years. Until they introduced the deli counters that use those ghastly number systems that require you to wait until your number is called; even the electronic number displays don’t always work. And until their checkout staff started getting all friendly and chatty.

Nowadays John and I usually buy our groceries at our local Woolworths and Aldi. The thing I like about Aldi, apart from the cheaper prices, is their checkout attendants are quite unfriendly and uninterested in chatting with anyone.

But Woolworths! They apparently train their staff to be friendly. Their friendliness is mostly inane and insincere, but still, they’re friendly.

“How are you today?” “Do you have a big weekend planned?”  “What are you doing for Christmas?” “Have you seen any good movies lately?”

John now avoids the checkout attendant who always asks the movies question. It makes him feel interrogated and tempts him to give the guy a long lecture about how inaccessible movies are for me and the impact this has on our movie-going.

I think he should just give him the long lecture. In a very loud voice! And preferably when I’m not there.

And they don’t seriously care what I’m doing for Christmas or this weekend, do they? They’re just being friendly. Presumably the idea is that if the staff are friendly the customers will feel welcome and come back.

I guess lots of customers do feel that way. Sometimes I do too, when some cool checkout attendant is unfazed when I tell them I’m deaf. They seem to know what to do and go on chatting with me. We have a laugh or two.

But these delightful occasions are rare.

Usually, when I feel forced to tell them I’m deaf because I haven’t understood what they’ve said, they give me the blank or scared look or the “oh sorry” and clam up as if I’m some weirdo who might contaminate them if they keep talking.

I’m often tempted to say, “That’s ok, I didn’t want to talk to you either.”

This stuff is stressful for deaf people. Knowing they’re going to say something to me, I make a habit of trying to watch them as I unload my groceries onto the conveyor belt. But often I miss the moment and find them looking at me as if I’m rude.

I hate being rude so sometimes I’ll say ‘hello’ first. But this doesn’t seem to work very well, they often don’t respond, I guess because they haven’t heard me – I have no idea how noisy a supermarket might be.

None of the attendants at my local supermarket ever seem to remember that I’m deaf, except one. She loves chatting so waiting in her queue is infuriating. But when I appear in front of her she clams up and ignores me until she gives me my receipt and then she smiles half-heartedly at me. I’ve learned to bypass her checkout, not only because it’s so slow-moving. She makes me feel unloved!

When John and I do the shopping together, it’s a relief to leave all this to him. I don’t even bother to watch the attendant to see if they’re talking to me. Sometimes they do and John either answers them or tells them I’m deaf. I know this is not ‘politically correct’, I should tell them myself, but I don’t care. Even if I do tell them they still go on to ignore me and chat only to John. I can’t be bothered with this nonsense.

The world is full of people who have no idea how to communicate with deaf people. We meet them every day as we go about our lives, it is part of the deal when you’re a deaf person. Most of the time I make an effort to educate them in a friendly way.

But I’m over Woolworths checkout attendants!

If stores like Woolworths are going to, as they apparently do, instruct their staff to be friendly and chatty with customers, the least they can do is train them properly.

Train them how to communicate with everyone!

What a fabulous thing that would be! I’d love to then be able to enjoy a checkout chat.

Christmas angst is coming to town

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Christmas is coming, and with it the angst1 so familiar to those of us who find ourselves the only deaf person in a gathering of family or friends.

Most of us belong to hearing families, many of whom don’t use Auslan. Even for deaf people who don’t sign, who rely on lipreading and perhaps hearing aids or cochlear implants, participating in group conversations can be difficult.

So family gatherings can be troubling, and rarely more so than at Christmas, when family is so much a part of the festivities. We want to be there, we want to be part of our family, but we so often feel excluded.

When I ask deaf friends if they had a good Christmas the replies usually go like this: “Ah, it was good to see everyone, the food was yummy, too much as usual, but you know how it is, everyone had a great time talking and laughing and mostly forgot to include me so by the time the day was over I couldn’t wait to leave.”

Unlike many I have heard about, my own family is pretty good. They tell me from time to time what the discussion is about. They sometimes tell funny stories directly to me while others listen. With my husband’s family, John takes on this role. It helps, but it’s not the same as being in a group where everyone signs and communicates easily.

I once took one of my sisters and her husband to a gathering of Auslan-using friends and interpreted only sporadically for them. Afterwards my sister commented on how educational it had been for her.

“Now I understand better what it’s like for you in a group of hearing people,” she said.

A friend, let’s call him Jack, whose family has deaf and hearing members who all use Auslan, once told me a story about a dinner with a hearing aunt. The aunt had also invited a hearing non-signing friend and as the dinner progressed, she and her friend engaged in an animated spoken conversation.

Feeling excluded, Jack decided to make a subtle protest and began to chew his food loudly.

His aunt looked at him and frowned. He stared back meaningfully and continued to chew loudly.

Finally she signed to him discreetly, “Shh! You’re eating noisily! You’re rude!”

Jack signed back, “You’re rude! You’re only talking to him! I’m here too!”

“He’s important!” signed the aunt.

“I’m important too!” signed Jack.

This wasn’t a Christmas dinner story. Deaf people have these experiences all year round, but we seem to feel the pain of them more acutely at Christmas time.

It’s important to do our best to educate our hearing family and friends about how to communicate with us and how to include us in family events. To help us, here are a couple of resources:

http://limpingchicken.com/2014/07/10/communication-tips/

http://limpingchicken.com/2015/12/05/charlie-swinbourne-12-tips-to-ensure-deaf-people-arent-left-out-at-christmas/

Encouraging our families to change can be a long, hard and often unsuccessful road. Rather than endlessly struggling with our own hurt and frustration, I have come to believe that it’s kinder to ourselves to chill out about it a bit, look at it from different perspectives, not just our own, and use strategies to better care for our own wellbeing.

In family gatherings no one is more important than anyone else, and that includes us. Of course every family is different and family dynamics can mean this isn’t always true, but generally speaking, in families everyone wants to feel that they are as important as others.

As deaf people we spend so much of our lives fighting to have our needs met and our rights respected that it can be easy to forget this point. But within the family it is a key point. Sometimes hearing family members also feel their needs aren’t considered. As deaf people our needs are sometimes a bit different but are not more, nor less, important than anyone else’s.

This year we will have Christmas with John’s family, who are less experienced at including me than my own family is. Over the years, John has become better at it, but there are times when he gets caught up in the conversation and forgets. Even if I kick him under the table or give him a meaningful stare he will sometimes respond with a blank-faced, “What?”

So I have found it’s more effective to remind him just before we arrive at such events that I’m going to need him to tell me from time to time what’s happening. And to remind him that saying, “They’re talking about the cricket. Bob thinks the Aussie’s aren’t so good this year and won’t win,” is much more helpful than just saying, “They’re talking about the cricket.”

John tries hard, he wants to do it well, and he does from time to time tell me what’s going on and check that I’m ok, but these things aren’t easy for him either. We have had many conversations about it and he has shown me perspectives I’d never thought of.

Conversations in groups of people can sometimes be about things that don’t interest him. So if I ask him aloud, “What’s she talking about?” it can put him on the spot because he doesn’t know and doesn’t want the person speaking to know he wasn’t listening. He isn’t there to be my interpreter and I don’t expect him to listen to and interpret everything.

Conversations also frequently overlap and sometimes John just hasn’t heard something I’m asking about, he’s been listening to a different conversation.

Sometimes in families there are dynamics that impact on people’s desire or ability to interpret or summarise conversations.

If Aunty Val and Aunty Flo get into an argument about some ancient family history, others may not want to enflame it by repeating any of it for us. A solution might be for someone to tell us quietly in another room, but we might need to ride out our frustration until a suitable moment.

If Grandpa and Dad are discussing some scientific theory that no one else understands, others are only going to be able to tell us they have no idea what they are talking about, it’s some science thing. This can annoy us. We think they just can’t be bothered to explain it to us. But sometimes it really is true. Contrary to what many deaf people often assume, sometimes hearing people really don’t understand things they hear.

Over the years I have become less troubled by the angst so many of us feel in gatherings of hearing people, and my mental health is stronger for it. Conversations with John and others in my family have helped me to better understand the dynamics from a hearing person’s point of view as well as my own.

I have also learned strategies that help me. These include getting involved with the setting up and cleaning up, turning on the TV captions, having one on one conversations, and just zoning out and turning my thoughts to my own interests.

And I have stopped trying to look like I understand what’s going on when I don’t. I don’t care too much anymore what other people think or whether they might feel uncomfortable about my exclusion.

Sometimes I just leave the group and go and read in a chair for a while. No one seems to mind (and I don’t much care if they do) and I’m happy doing that.

And I often take my knitting with me to family gatherings. It’s ideal. I can simultaneously knit and look around, I can be physically in the group and periodically participate in the conversation and still feel I’m doing something enjoyable and personally meaningful with my time.

Perhaps this year I’ll take my knitting to Christmas lunch.

I’d love to hear how you deal with the deaf Christmas angst. However you deal with it, I wish you all a very merry Christmas!

  1. Angst, often confused with anxiety, is a transcendent emotion in that it combines the unbearable anguish of life with the hopes of overcoming this seemingly impossible situation. Without the important element of hope, then the emotion is anxiety, not angst. Angst denotes the constant struggle one has with the burdens of life that weighs on the dispossessed and not knowing when the salvation will appear.   http://www.urbandictionary.com/define.php?term=Angst

Who’s disabled?

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A few years ago, lolling about in Mum and Dad’s pool with one of my sisters, she and I had a conversation about disability politics, during which I referred to myself as disabled.

My sister stopped lolling and stared at me.

“You’re not disabled!” she said, shocked.

“Yes, I know,” I said. “You and I don’t see me as disabled, but society does.”

“I’ve never thought of you as disabled,” she said. “It’s never occurred to me to think of you that way! You’re just you. A bit different. But disabled? No way!”

A few days later, she said, “I can’t get over this idea of you as disabled! I’m so shocked. It’s ridiculous that people see you that way!”

On Monday 13th July, appearing on ABC channel 24 with the other 2015 Australians of the Year, Young Australian of the Year Drisana Levitzke-Gray said: “Deaf people don’t see ourselves as disabled. We see it as deaf gain rather than hearing loss.”

It wasn’t long before someone named Tony commented on Twitter: “You don’t have a sense of hearing. Deaf people are disabled. Deal with it.”

Drisana said many things during this live television broadcast. She talked about being the fifth generation of deaf activists in her family, four of them women, and about deaf people’s human rights, in particular their right to use Auslan. She talked about the need for access.  She talked about the government cutting Deaf Australia’s funding and the impact this has on advocacy for deaf people’s human rights. She talked about how she deals with criticism and people’s expectations of her. But this one small comment about disability was the one thing Tony homed in on.

Who’s this guy Tony? Who cares what he thinks?

But his comment is typical of the social attitude I was referring to in my conversation with my sister.

It is typical of the bigotry exemplified many years ago by a journalist who, when I objected to his use of the term ‘deaf and dumb’, said that it was a perfectly acceptable term to use because all his friends used it.

It is typical of the widespread practice in our society of seeing anyone who is different as ‘other’ and in need of changing to fit whatever is perceived as the ‘norm’.

This question of whether or not deaf people are disabled arises regularly. Deaf people often talk about it. Deaf people and hard of hearing people don’t always agree about it. Non-deaf people are frequently baffled by it.

Hard of hearing people or people who become deaf later in life often do experience their deafness as a loss and see themselves as disabled. Many of these people refer to themselves as hearing-impaired.

For people who are born deaf or become deaf early in their life, being deaf is a normal state of being, we don’t feel we have lost anything, and we dislike the term hearing-impaired: we don’t see ourselves as impaired.

For many of us, being deaf adds a dimension to our life. It brings a different way of experiencing and interacting with the world. When we embrace Auslan and the Deaf community, it brings us a wonderfully rich and expressive language, a unique culture and a world-wide community of friends, understanding, acceptance and belonging that transcends borders, race, religion, gender, politics.

This was what Drisana was talking about when she used the term ‘deaf gain’.

But people like Tony find this hard to understand. Indeed, they often don’t even stop to think about what Drisana might have meant. They see only the absence of hearing and see attempts to explain this different ‘deaf gain’ reality as a denial of reality – their reality.

I was often asked about this issue during the years I was an advocate with Deaf Australia. Many people pointed out that organisations like Deaf Australia received funding from disability programs. How then, they asked, could we say we weren’t disabled?  We had to decide what we were one way or the other, we couldn’t have it both ways.

Ah but we could, I argued. And this is how I explained it:

Disability is relative. If you’re a hearing person and you can’t sign, and you walk into a room full of deaf people communicating in Auslan, who’s disabled?  You or all these deaf people?  Who needs an interpreter?  You or all these deaf people?

By ourselves, and with each other, deafness doesn’t disable us, we just find our own ways of doing things.

It is when we go out into an environment designed by people who hear, for people who hear, that we become disabled. It is not our deafness that disables us, it is the environment, limitations and expectations that are imposed on us by others who are unlike us.

For six years from 2008 to 2013 I was a member of the National People with Disabilities and Carers Council, which provided advice to the Minister and Parliamentary Secretary for Disabilities. The Council, a large and wonderfully eclectic group, was handpicked mainly by Bill Shorten and after its first meeting, a group of us sat in the Qantas lounge at Canberra airport, discussing how we’d first met Bill Shorten and how unusual he was for a politician in that he seemed to ‘get it’ about disability.

I related the story of how I’d used the ‘in a room full of deaf people, who’s disabled?’ explanation when I first met Bill. In our group was Milly Parker, who went on to become a well-known disability advocate. Milly, who has a brain injury, runs her own business, making gourmet dog food and selling it internationally.

She listened to my story and said, “That’s right, Karen! In my business and my home everything is set up in a way that works for me and I’m not disabled. I only become disabled when I go out into a different environment and other people put their expectations and limitations on me.”

During many years of working with people with all kinds of ‘disability’ I have learned that deaf people aren’t the only ones who don’t see themselves as disabled. We aren’t the only ones who wish that other people would stop trying to change us and put road blocks in our way.

Elizabeth Hastings, the first Disability Discrimination Commissioner put it this way:

“…disability is part of the human community… Certainly disability is not always convenient, attractive or desirable, but it is an ordinary attribute of being human. Even though my disability is also not especially convenient, attractive or desirable, it is my life and I have absolutely no wish for it to be otherwise. Not everybody will feel the same way about his or her circumstances. However many people with disabilities do think and feel the way I do – that we do not wish to be altered, cured or transformed. We do wish our equipment would work reliably, and that education, transport, shopping and professional and other services, work, entertainment, banking, insurance and information were accessible to us.” 1

When I was Executive Officer at Deaf Australia I often worked with Damian Griffis, Executive Officer at First People’s Disability Network. One of the things that Damian often explained at various meetings was that in traditional language there was no word for the concept of disability. Aboriginal people with disability are supported and accepted as members of their community.

So who’s disabled?

Isn’t everyone, in some way, sometime? At the end of the day it really doesn’t matter.  What is important is how we make the most of what we have, how we live our lives, how we treat other people and how our society supports and accepts us.  As Elizabeth Hastings put it, disability is part of the human condition. It’s normal.

And to people who would like to think it isn’t, I say: deal with it.

  1. Hastings, E. 1997. Keynote address. Presented at the Social Options Conference, November 21, Adelaide, Australia.

To do our civic duty

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My friend Gaye Lyons wants to serve on a jury. I don’t.

Lots of people are like Gaye and lots are like me. This is true of hearing people too.

Whether or not we actually want to do it, deaf people should have the right and the responsibility to do their civic duty, alongside hearing citizens. This means that when people like me are called for jury duty, we would do it even though we might not want to, because that is our duty as citizens.

But in Australia the law, or the traditional interpretation of the law, prevents deaf people from serving on a jury. It prevents us from doing our civic duty. It does not treat us as citizens equal to others.

This is essentially what the issue of deaf people and jury duty is about: whether deaf people should be treated as equal citizens and allowed to do our civic duty.

When my friend Gaye Lyons received a summons for jury duty in January 2012 she advised the court that she is deaf and requested an Auslan interpreter. Her request was refused and she was excluded from the selection process on the grounds that she is deaf and couldn’t do it. This has happened to many deaf Australians.

The Disability Discrimination Act makes it illegal to discriminate against people on the grounds of disability. But sometimes one law cancels out another. Sometimes one person’s rights override another person’s rights.

Gaye Lyons feels so strongly about her right, and the right of other deaf people, to serve on a jury and do her civic duty that she decided to challenge the court’s decision. So have others in other states, but Gaye’s is the only challenge that has progressed through the courts.

There has been much hype about Drisana Levitzke-Gray being the first deaf person in Australia to serve on a jury, in Western Australia in January 2014.

But this is a misunderstanding. Drisana did not actually serve on a jury.

She did progress further through the jury selection process than any deaf Australian we know of. When she was summoned for jury duty she requested an Auslan interpreter and was provided with one. She and her interpreter went to the court for the next stage of selection, the random ballot. Names were randomly drawn and those drawn progressed to the next stage. Drisana’s name was not drawn, so she did not progress further in the selection process and did not serve on a jury.

The breakthrough in Drisana’s case was that she was not excluded from the jury process because she was deaf. She was excluded by the random ballot. She was not discriminated against because she was deaf. She was treated as an equal citizen who could do her civic duty, at least up to the random ballot stage in the process. She might have been excluded later in the process because she was deaf, but we don’t know if that would have happened.

Gaye Lyons’ case was heard by the Queensland Civil and Administrative Tribunal (QCAT) in June 2013. The Tribunal ruled against her.

She appealed in October 2014. The Tribunal ruled against her appeal.

The Tribunal’s view was that Gaye could not serve on a jury with an interpreter because the interpreter would be a 13th person in the jury room and the jury room must have only 12 people, the jurors.

I’m sure a lot of judges don’t understand the interpreter’s role, how they work and the ethics they abide by. And yet, interpreters already work in the courts when victims, defendants or witnesses are deaf, and even when a lawyer is deaf: Queensland lawyer Kathryn O’Brien has an interpreter when she appears in court. Interpreters worked with Gaye during her QCAT hearings.

Why is the thinking so narrow-minded in relation to the jury?

It seems that researchers have identified that the sticking point is that not enough is known about what happens in the jury deliberation room. Research has shown that with an interpreter, deaf people can access and understand legal evidence and arguments on a par with hearing people, but evidence is needed to show that the interpreter does not interfere with deliberations in the jury room and is not a 13th ‘juror’.1

I’m not going to talk about the legal aspects. I’m not a lawyer. What interests me most is that laws are made by people. Laws are used and interpreted by people. Laws are unmade and changed by people. So although we need to work with the law, it’s the people, and the thinking about these laws that drive it all.

A lot of discussion centres around whose rights should come first, the deaf person’s or the victim’s and defendant’s.

People who maintain that the victim or defendant’s rights should outweigh the deaf person’s tend to brush aside arguments that different people bring different qualities to the jury deliberation.

They also brush aside questions of whether the jury should include deaf people when the victim or defendant is deaf.

Such discussions reveal an underlying assumption that having a deaf person on the jury would not be in the best interests of the victim or defendant, i.e. there is something inferior about deaf people.

Several years ago I was involved in a social media discussion with a couple of hearing people I know who work with the deaf community. One person in particular was adamant that deaf people should not be permitted to serve on a jury because they just cannot do it, even with an interpreter. He said that if he were a victim or defendant he wouldn’t want a deaf person on his jury and his right to a fair trial should override the deaf person’s right to serve on the jury.

I wasn’t particularly surprised by his views. I know that even some people who work with deaf people have low expectations of them. A friend once told me that in a candid moment he asked a hearing colleague why she didn’t like deaf people and she answered: “because they’re not educated.”

It is unusual to see anyone actually say this openly, let alone publicly, but in my Facebook discussion, the hearing person did. At one point he said: “Oh come on, Karen. We both know that so many deaf people don’t get a good education.”

This is true. The education system still does a very poor job of making education accessible and equitable for deaf people. But a poor education isn’t exclusive to deaf people. Many hearing people are not well educated. Yet they are not automatically excluded from jury service.

A jury is supposed to be representative of the community. Deaf people are part of the community. A jury process that automatically excludes people because they are deaf does not provide a true representation of the community on the jury.

Clearly there are people who have an entrenched belief that deaf people are incapable, inferior citizens. No matter how well educated and accomplished many deaf people are, there will always be others who aren’t and it seems that in the minds of many, all of us are tarred with this ‘inferior, uneducated’ brush.

What kind of civil society are we when we treat people like this?

But I take heart from the research that is being done by people like Sandra Hale at the University of NSW and Jemina Napier, previously at Macquarie University and now at Heriot Watt University in Edinburgh. Using mock trials, they are collecting evidence of what actually happens with deaf jurors and interpreters in the jury room.

And there are enlightened lawyers arguing for our right to do our civic duty alongside others. Gaye Lyons has some of the finest on her legal team.

These academics and lawyers are advancing the cause of a more just civil society.

I believe that one day soon our society will change and deaf people will serve on Australian juries. Imagine if this then leads to social justice in education! After all, people who are considered equal citizens should have equitable education shouldn’t they?

In her quest for this change for all of us, Gaye Lyons has now appealed to the Queensland Court of Appeal, on the advice of her barristers. Her appeal will be heard, with Auslan interpreters of course, on Wednesday 20th May 2015 at 415 George Street, Brisbane.2

I will be there to lend moral support to my friend and to the cause. If you believe in a civil society that treats deaf people as equal citizens, please come along and join us.

Notes:

  1. See Napier, Jemina and McEwin, Alastair, Do deaf people have the right to serve as jurors in Australia? In Alternative Law Journal Vol 40:1, 2015, 23-27.
  2. To find out what time, on Tuesday night do a Google search on ‘daily law lists queensland’ then select ‘Supreme and District Courts’, then ‘Brisbane’. The Court of Appeal list, showing names and times, should be at the top of the list.

She’s got an eye!

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For deaf people, our eyes and hands are our most treasured assets. So when the vision in my right eye began behaving strangely I became anxious.

At first it seemed that I couldn’t see quite so well and things sometimes appeared a bit blurry. So in September last year I had an eye check-up. The optometrist, Kate, told me the vision in my right eye had worsened slightly and I have early stage cataracts in both eyes. It would be many years, she said, before the cataracts became a problem and would need to be removed.

So according to Kate, nothing unusual was happening.

Afterwards I said to my hearing husband John, “I don’t think she understands how much I depend on my eyes,” although I had mentioned it to her.

My new glasses didn’t seem quite right. I couldn’t see quite as well as I thought I should. I thought Kate’s idea of ‘bad’ cataracts must be quite different from mine.

John and my mother both thought I should see an eye specialist.

“They might do cataract surgery earlier than usual for you,” Mum said.

I worried about macular degeneration, which I knew leads to blindness. I told myself to stop being hypochondriac. I dithered, feeling bad about insulting Kate by requesting a referral.

Straight lines began to look wavy. When driving, I couldn’t tell if speed signs were 60, 80 or 90 until I was very close to them, and dark coloured cars were hard to see. Reading became more difficult, people harder to lipread unless they were close.

Then one morning I saw black squiggles that became cobwebs moving on my eye. This was definitely not good. A Google search told me it could be a common and harmless ‘floater’: a bit of vitreous gel that breaks off and floats across the eye; or it might be an emergency, a retinal tear.

This was scary.

I sent John a text at work and we decided to ring Kate and ask what I should do. She told me to come in immediately. John left work and came with me.

After various tests, Kate said my left eye was the same but in four months my right eye had deteriorated by two lines on the eye chart! The cataracts were unchanged. Although the cobwebs could be a sign of a retinal tear, she couldn’t see any. But there were two small bleeds near the optic nerve, which she showed us on a photograph.

It was obvious I needed to see an eye specialist.

Kate made an appointment for me for an hour later.  Dr V’s schedule was full, but if I needed treatment they would squeeze me in.

In the doctor’s rooms, an optometrist, Paul, did more tests, took more photographs, and a doctor told me I had a hole in the macula of my right eye.

John and I looked at each other, shocked. Was this macular degeneration?

“It’s not bad,” the doctor quickly reassured me. “It can be treated.” Possibly not macular degeneration then!

Half an hour later we saw Dr V. I liked him immediately. He was down to earth, warm and friendly, easy to lipread and patient when I needed information repeated.

He reassured me this was completely different from my worst fear, macular degeneration. He showed us a cross section photograph of my retina, clearly showing the hole and explained how I got it. As we age, the gel in our eyes shrinks. Usually this happens slowly and is not a problem but sometimes it happens too fast and tears a hole.

If nothing was done, he said, my peripheral vision would be fine but my central vision would deteriorate until I was unable to read. Me, an avid reader, knitter, crochetter, sewer, Sudoku and crossword puzzler, unable to do any of those things? Unable to communicate easily? My heart trembled.

My eyes’ complexity exacerbated the situation. Born with a turned left eye, I have twice had eye straightening surgery, my eyes don’t work together quite as other eyes do, and my right eye is dominant. Although my left eye’s vision is good, working alone it tires more easily and reading with only that eye is difficult.

The only option was surgery which, Dr V said, should stabilise or improve my vision. He said the surgery was only about 40 minutes’ day surgery but I would have to spend a week face down afterwards. He repeated this twice to be sure I understood it. He explained that during the surgery they would take some of the gel out of my eye and put in a gas bubble and that the face down position was essential to keep the bubble over the hole.

Surgery was scheduled for two weeks later. During those two weeks, John and I researched the condition, surgery and recovery. The Internet is a marvellous resource and I found helpful information. But some information turned out to be inaccurate, causing needless worry. The doctor’s staff sent information about equipment we could hire to help with face down recovery.

Although nervous about the surgery, what worried me most was communication afterwards: how would I communicate if I had to be face down? Private hospitals, I knew, generally won’t provide interpreters, and even if they did, how would that work? Where would the interpreter be? Lying on the floor where I could see them?

Nevertheless I asked. I sent an email to the hospital, explaining that I‘m deaf, my concerns and offering suggestions for managing post-surgery communication. These included an interpreter, providing post-surgery information before surgery, allowing John to accompany me before and after surgery, writing things down.

The hospital replied promptly, ignoring the interpreter request but agreeing to the other suggestions and reassuring me that I wouldn’t be face down until after I had finished in the recovery bay and had eaten. I let the interpreter issue pass; there are times when even I get tired of having to advocate for everything and because I value my privacy, I often choose to use interpreters for health situations only when it’s absolutely necessary.

So when I presented for surgery John and I were well prepared and so was the hospital. It helped that it was a small eye clinic rather than a large hospital and the nurse who cared for me in the recovery bay was the nurse who replied to my email. It probably also helped that I was the days’ last patient and there was no issue with John accompanying me.

As I moved through the pre-surgery steps, each person asked me what procedure I was having. It was a question the clinic’s pre-surgery information advised would be asked repeatedly to prevent mistakes. When the anaesthetic nurse asked it of me she said, “What are we doing today?” I misread her and replied with a confused question: “What have I been doing today?” Why would she want to know that?

She too looked confused.

John joked, “She’s been at the pub,” and I realised what she had in fact asked. We all laughed.

Instead of a general anaesthetic, I had local anaesthetic and what is called ‘twilight sleep’, a drug that makes you very relaxed and drowsy. Near the end I became more alert and could see fuzzy shapes and what looked like two long thin needles. It was creepy.

Later a hearing friend told me me that for her the worst thing about local anaesthetic surgery was being able to hear what was going on. I hadn’t thought of that. It’s an example of how good it is to be deaf sometimes.

Back home, the face-down equipment was ready. A chair similar to those you sit and kneel on for neck and shoulder massage, with a donut shaped face rest. On the bed, the same type of face rest raising my face off the bed. To keep my back straight, I slept – surprisingly well – on a row of pillows.

For six days I moved between the chair and the bed and occasionally sat leaning forward in an armchair, holding my face, my arms resting on with a pile of pillows. In the shower, at the table, walking around the house, everywhere, I pointed my nose at the floor. I drank through a straw and ate small, easy to eat meals. John stayed home, brought me cups of tea, rubbed my back, kept me company. It wasn’t totally necessary but it made my life much easier, less anxious.

Friends asked to visit but I told them communication would be too hard in the first week. John and I talked only about essential things. Sometimes he signed where I could easily see his hands, sometimes he sat down and I stood up so I could see him.

John bought a small TV and laid it flat on the chair’s tray below my face. The gas bubble blurred my vision and reading print with my left eye was too difficult but I could read TV captions for short periods.

I was calm, patient, slow, determined. I didn’t care about discomfort. I would do whatever it took to fix my eye. On the fourth day I started to struggle a little, but much of the time I was in a semi-meditative state, playing over and over in my head that beautiful song, You raise me up:

You raise me up so I can stand on mountains

You raise me up to walk on stormy seas

I am strong when I am on your shoulders

You raise me up to more than I can be

And so the week rolled by and on the seventh day we went to see Dr V.

“How are you?” asked Paul, the optometrist.

“I’m great!” I said.

He smiled and asked, “How are you really?”

“Actually I am pretty good,” I said. And I was.

Although he couldn’t actually see the macula because the gas bubble obscured it, Dr V said everything looked good and I could stop the face down position. It was such a joy to look the world in the eye again and to drink tea from a china cup instead of a straw.

Cabin fever overtook me. I had to get out of the house. John and I went to the shops. My eye was bloodshot, bruised and puffy. John worried that people would think he’d been beating me up. I didn’t care what people thought.

In the supermarket I felt unsafe. Unable to see out of one eye or hear people coming up on that side of me, John frequently had to guide me out of people’s way.

In the Spotlight checkout queue, a little girl stared at me. I smiled at her. She stared. Outside, walking to the car, John told me she’d been saying to her mother: “She’s got an eye! She’s got an eye!”

We laughed.

It became a joke for us.

I’d say, “I can’t do that. I’ve got an eye!”

John would say, “I can’t do that. You’ve got an eye!”

My sister Deborah came to Brisbane for a conference, staying overnight with us.

“Did you get a text from Warren?” she asked.

I told her I had, wishing me well for the surgery.

“Why?” I asked.

She told me that Warren, our brother, had been talking with Avril, another of our sisters, and said to her: “Poor Karen! She’s had so much to deal with in her life and now this happens with her eye! I’m really worried about her!”

“He’s getting soft in his old age,” I said to Deb.

“That’s what Avril said!”

We laughed. Such a lovely brother!

I couldn’t drive because the gas bubble obscured my vision. I’d been told it would take six to eight weeks to disappear. Gradually the bubble got smaller and I began to see over the top of it, but it made the light streaky and bounced around disconcertingly when I moved.

One morning I saw a lot of black spots when I looked over the bubble. When I looked down through it, the spots disappeared. It was weird. By lunch time they were still there and I was anxious, reminded of the black squiggles.

It was a Friday. John doesn’t work on Fridays.

“Maybe we should phone the doctor’s rooms and ask if this is normal,” I said. John phoned and we were told to come in now.

While we waited for drops to dilate my eye, we sat in the waiting room talking desultorily. John cracked silly jokes.

Paul examined my eye thoroughly, carefully. Finally he said that everything looked okay. The retina looked smooth, there was no sign of a tear. The spots were just debris in the fluid, stirred up by the surgery and magnified by the gas bubble concentrating the light.

For the first and only time in the entire saga, I suddenly was weepy, weak with relief. I hadn’t realised quite how frightened I’d been.

While I pulled myself together, John said to an understanding Paul: “Our eyes are important to all of us, but when you’re deaf they are even more important.”

A week later I had another checkup with Paul and Dr V, who told me that the hole had closed and all looked good.

“You’re magic!” I said to the doctor. It was amazing that with the help of a gas bubble acting like a bandaid, my eye essentially healed itself.

Seven weeks after surgery, Paul tested my vision and told me it was almost back to what it was at my September 2014 checkup with Kate. But although they now looked straighter than before, I could still see some waviness in straight lines. He explained that when the macula hole closes, sometimes the nerves don’t realign perfectly and my vision may never be as crisp as it was. It might improve a little more over the coming 12 months.

The gas bubble got smaller and smaller. I started reading again about five weeks after surgery and driving again at six weeks. The bubble finally disappeared at exactly eight weeks.

It almost felt like losing an old friend.

And I am so grateful I’ve got an eye that works well again.

Disclaimer: This is just my personal story. It is not medical advice. If you think you have a problem with your eyesight, seek advice from a medical professional.

Sticks in the forest

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A teacher takes some students to the forest and asks them to each bring her a stick. When they return, the teacher takes each student’s stick in turn and breaks it. She sends them back into the forest to collect more sticks. Again she takes each stick and breaks it and sends them back to the forest.

The third time the students return, they confer and when the teacher asks for their sticks they give them to her together in one bundle. The teacher cannot break the sticks, the bundle is too thick and strong.

I first saw this story told by Laurene Gallimore, a deaf African-American professor from Gallaudet University, at the World Federation of the Deaf Congress in Brisbane in 1999.

This simple story is a powerful illustration of why it is so important for deaf people to work together in one large group in the best interests of the group as a whole, rather than individually on their own  interests. It is why we need Deaf Australia, which brings us together to advocate for our human rights.

Reminding each other of this story is more important now than ever before because Deaf Australia is experiencing its biggest threat since its establishment 29 years ago.

It is not just that Deaf Australia will lose its government funding at the end of June this year, it’s also that the deaf community has become more complacent and politically apathetic.

When I first got involved with Australian Association of the Deaf (AAD), as Deaf Australia was then known, 26 years ago, it had about $1,000 in the bank. It relied on membership fees and small donations from Deaf Societies. Volunteers did the work, we paid our own costs for attending board meetings, sleeping on each other’s couches, and as Secretary I paid some of the administration costs myself. Meetings and events were well attended and people were very passionate about the issues we worked on.

For several years in the late 1980s and early 1990s when Colin Allen was President and I was Secretary, we met at his office at least once a week after work to do AAD work. His employer generously allowed us to use their equipment and supplies.

Our funding requests to government were regularly refused on the grounds that a ‘deaf’ organisation, Australian Deafness Council (ADC, the earlier version of Deafness Forum) already received secretariat funding.

Deaf people established Deaf Australia in 1986 as their representative organisation, controlled by deaf people, because the deaf voice had been ignored during many years of trying to work within ADC. Like Deafness Forum, ADC was not controlled by deaf people and the majority of its members were service providers. But government didn’t care.

In those days Deaf Societies hosted an annual national deafness conference. At the 1992 conference in Perth, Brian Corcoran, a bureaucrat in what is now the Department of Social Services, made a presentation. Afterwards, an audience member asked why government wouldn’t fund AAD and when Mr Corcoran trotted  out the usual answer the audience went wild, stomping their feet on the floor and demanding funding for AAD.

Colin and I were working in the conference office at the time and missed the excitement but someone came running to fetch us. Colin introduced himself to Mr Corcoran, expressed his regret that he had been subjected to such an angry outburst, and explained why the community was so angry.

Brian Corcoran was actually a very nice, reasonable man. His department paid the travel costs for Colin, myself and an interpreter to meet with him in Canberra soon afterwards. We were also accompanied by Anne Mac Rae, then CEO of the Deaf Society of NSW.

Anne Mac Rae was a wonderful mentor to us and to AAD. She didn’t do things for us, she taught us how to do them ourselves. Over several years, she taught me how to write funding submissions, coached us in preparation for meetings with government and accompanied us to several meetings where she occasionally contributed to discussions but mostly observed and later gave us constructive feedback on how to do better next time.

Our meeting with Brian Corcoran was a turning point. He genuinely listened to us. He explained that government policy didn’t allow him to give AAD secretariat funding but we could apply for advocacy and information service funding, and he offered his department’s advice on what was needed for a successful application.

So that was how AAD/Deaf Australia became a funded organisation in 1992. It has received funding continuously ever since. In 2001 government decided to recognise AAD/Deaf Australia as the legitimate organisation representing deaf people who use Auslan. Funding was increased and changed to secretariat funding, even though Deafness Forum was already funded.

Much has been achieved in the 23 years that Deaf Australia has had paid staff.

But now, if government can’t be persuaded to reinstate funding and alternative funding can’t be found, at the end of June this year there will be no staff. If Deaf Australia is to continue it will have to become wholly voluntary again.

Will this work? I think so, up to a point. The board will likely take on more work. Some of us will do some work voluntarily again. But new and passionate younger volunteers with new ideas and the vitality of youth are needed.

The community is different now. People are accustomed to taking Deaf Australia for granted and having staff do the work. Over the past few months, a few members have called for deaf people to step up and show their support for Deaf Australia – to become members, make donations and so on – but little has changed.

All deaf people benefit from Deaf Australia’s work, but its membership fluctuates between 300 and 500. Numbers could be much higher.

Over the years I have heard many reasons why people aren’t members: it’s too expensive ($30 per year); they don’t like the President or the CEO or someone else on the board or staff; they don’t like something it did, in particular, the cinema captioning issue and closing the website discussion page 10 years ago; they don’t like politics; they want more immediate benefits and freebies; it doesn’t lobby for something they want – someone once said that even though they use the NRS (National Relay Service), NABS (interpreting service for health appointments) and the EAF (Employment Assistance Fund) these are things that Deaf Australia has already done for them and they want it to work on getting free hearing aids before they will join.

But by far the most common reason is they don’t know about Deaf Australia or understand what it does for them.

Deaf Australia has never been great at beating its own drum. It has never had enough peacocks strutting its stuff.

Many people assume that only service providers and hearing people do the things for them that Deaf Australia does. I would be a rich woman if I had a dollar for every time I told a deaf person that Deaf Australia lobbied for the NRS, for NABS, for the EAF, for Auslan in education and early intervention, and so on and was told in reply: “No! ACE did it! Deaf Society did it! DCA did it!”

It can be hard to convince deaf people that the big picture is more important than any one single issue or personal dislikes and grudges, and that politics matters to all of us, especially because we are a minority group.

For years I tried to persuade my friend Kevin Lyons to become a member. He was happy for his wife Gaye to be a member, but sport was his thing and he wasn’t interested in politics.

Then Gaye started working with me at Deaf Australia and going home with stories of issues we were working on, how hard we had to work to win small steps forward. Now Kevin is a committed member and he worries about the future: what will happen to deaf people’s rights if Deaf Australia has no money or staff and even worse, has to close?

We need Deaf Australia. It is the only national organisation that is wholly controlled and run by deaf people themselves. It is the only national organisation that has no driving interests other than the rights of deaf people, that lives and breathes “nothing about us without us”.

But right now, Deaf Australia needs us.

Now is not the time to be dragging out personal dislikes, ancient grudges, criticisms and personal agendas.

Now is the time for the big picture, for all of us to talk to each other about what Deaf Australia achieves for us and why we need it and how each of us can support it. It’s not hard: become a member; make a donation; get involved in campaigns; and encourage your family and friends to do the same.

We need to make the bundle of sticks that is Deaf Australia thicker and stronger. Otherwise we will all be just individual sticks in the forest.

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