Tag Archives: family

Talk to the Goose

06 Saturday Jun 2020

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March 18, 2020

Do Not Travel overseas, says the Australian Government.

Late afternoon, we arrive home from a road trip. In the week we’ve been away, the Coronavirus situation has changed rapidly. Now we just want to stay home.

I text three-year-old Jack’s Mum and Nanny Gaye: I won’t be coming to his birthday party this weekend after all. Mum understands. Nanny Gaye says, “Fark!” People are over-reacting, she says; her GP told her to go out, she’ll go mental if she stays home. I feel bad. I worry about her, she’s in the high risk group.

March 23

It seems plenty of people agree with Gaye. Over the weekend they flocked to the beaches. So beaches closed.

Government says stay home, shuts down pubs, restaurants, sports, events. Queensland schools remain open. I worry about teacher friends.

Coronavirus cases climb, 1,347 now. It’s very fast and getting faster. Scary.

Breda is in Brisbane. We’ve agreed to chat on Skype but when I try to log in, it doesn’t work. I haven’t used it for years. Eventually John fixes it. Breda tells me her mother’s aged care home is locked down now, family can’t visit; but they relented, let her visit in the garden since she’d come from Sydney especially.

March 25

The hospital calls John, pre-admission paperwork for his angiogram tomorrow.

Government announces further closures, restrictions, cancels elective surgery. We decide not to worry, his procedure will likely go ahead, it’s semi-urgent.

Australia closed its borders on Friday night. It feels surreal. I picture our vast island, its rocky cliffs now sentinels, its jetties, beaches, airport gates barricaded with ropes and “No Trespassing” signs. We ponder what to do about our overseas trip booked for May and June, decide to put off thinking about it until after tomorrow.

We’ve invited Stepdaughter 1 and Boyfriend, who house sat while we were away, to stay on so they can be together. Stepdaughter 1 is studying online; Boyfriend is waiting for a new job to start. In our renovated Queenslander, we give them upstairs; we live downstairs except for meals. They stay up late, leave lights on, are messy, unobservant. They eat a lot. Boyfriend has expensive taste in coffee. But they help out with cleaning, cooking, washing up; they buy some food and coffee. And they make the most divine chocolate pudding we’ve ever eaten.

Harmony hovers. I try harder to bite my sharp tongue, be patient, calm. Stepdaughter 1 can be prickly, John grumpy, Boyfriend a somewhat unknown quantity. I expect they feel the same burden, trying to keep the oldies, the wife, happy.

My sister texts, confirms our eighty-eight year old Mum is fretting, can’t imagine what she’ll do at home all day. Hopefully their Far North Queensland rural location will protect this four generations slice of my family.

These days I pray a lot more.

Upstairs, computer games and fantasy movies reign. Downstairs, it’s the TV, with relentless COVID-19 coverage. Information access improves for me: Auslan interpreters begin appearing on TV press conferences; I’m thrilled, grateful. Government announces a committee to redeploy unemployed people, repurpose factories, keep supply lines going. We need to manufacture things like masks and ventilators for hospitals. Bundaberg Rum Distillery is using its ethanol to make hand sanitiser. It’s like wartime government requisitioning of private industry to work for the war effort.

It’s strangely exciting, dramatic, scary. Food shopping is bizarre. We sanitise our hands, don’t touch anything unnecessarily, walk wide of people. Others do the same, glance at us warily.

Watching TV gets depressing. John disappears into the study. I go outside, deadhead the roses, eat fresh-picked raspberries. I’m thrilled with my unexpectedly successful raspberry patch!

March 26

We check into the hospital at 6.00am. Hand sanitisers are everywhere, waiting room chairs 1.5 metres apart. I wonder if they measured each one. People come and go, constantly sanitising their hands. When John is called, they tell me I can’t stay and wait, so I leave him there, go home to worry. They say they’ll call me when it’s done but we know they won’t, my deaf need for texts instead of phone calls flummoxes procedures everywhere. Only my dentist does it well.

So John texts me, provides better information than the hospital would. At 6.55 he’s changed into a gown….putting his phone away. He leaves me in silence. At 9.30 he texts. He’s in recovery, all good…he’s had some food…at least an hour yet…he’s dressed… And so I track him as he perks up, feels better, asks me to pick him up at 1.30.

March 28

It’s Queensland local councils election day. Contradictory government messages abound. Stay home, don’t go out unless it’s essential, it’s not safe. It’s safe to go out and vote. Friends say they won’t vote or pay the fine. We voted pre-poll when it was quiet, took our own pencils and hand sanitiser, used their sanitiser too. I’ve become obsessive about hand washing; John always was.

Numbers keep rising: 3,500+ now and 14 deaths. Government flip-flopping incites nervousness. They reinstate elective surgery in private hospitals for another week, scrap an absurd 30 minute, 1.5 metre rule for hairdressers. Some are choosing to close. We don’t care. We have clippers, love our grey hair. But we worry about our wonderful hairdresser. “Perhaps we should gift him the cost of our cuts,” John says.

Family and friends have phoned, texted, checked we’re ok; we’ve checked on some. I worry about Lesley, already in home isolation for six weeks with a different virus and flu when we all went into isolation. At eighty-six, she’s still such a social person. We text weekly; she’s fine, talks with family and friends on the phone, reads, goes walking, practices line dancing in her kitchen.

Gaye doesn’t want to chat on Skype, she’s depressed. I worry.

After dinner Stepdaughter 1 and Boyfriend say they’re going to Macca’s for ice cream. Please don’t risk it, we say. They make chocolate pudding instead.

March 30

We have a big day out. We all go to the chemist at Brookside for a flu jab, do a week’s grocery shop, stock up on wine. But we forget things. Leek for the shepherds pie; some things Stepdaughter 1 wanted: running late, stressed, she forgot her shopping list. So John goes back for the missing things. Going out, doing the shopping, is stressful now. Scary. Threatening.

Boyfriend’s new employer calls. He still has a job but everyone is working from home, can’t train him until they return to the office. He’s been considering moving back home to his parents’ when work starts. We worry. If he moves back there, sooner or later Stepdaughter 1 will want to be with him. They need to pick one place: here, his parents’ or her mother’s, and stay there. Going back and forth between houses isn’t wise or fair to any of us.

John talks with them. Now that the job situation is clear, they decide to stay here. They go back to her mother’s and his parents’ to collect more clothes, his coffee machine. He’s very attached to his coffee.

We hope they will stop finding reasons to go out now, except for walks. I get nervous when people go out.

April 3

Life seems slow but the days still slip away. At two o’clock I decide I’m spending too much time knitting in front of the TV and go give the garden some love.

Today’s news is encouraging. Virus spread is slowing, isolation is helping. But government keeps saying things will get worse, go on for at least six months, possibly 12 to 18 months. It’s hard to imagine living this way for so long.

John stresses about our holiday cancellations. It’s a constant conversation. We’ve requested a full refund but they aren’t responding. No one is offering refunds, only credit notes. We worry about travel companies collapsing. Who knows when we might travel again? We understand why they want to give credit notes but it’s a lot of money for us to lose.

I tell him, as I have every day for a week: give them time, stop thinking about it constantly.

He goes to the doctor, the supermarkets for bits and pieces, flour for Stepdaughter 1, she wants to make pizza. We couldn’t get any when we did our big shop. There is still no flour.

I settle on the back patio with a cup of tea and Tim Costello’s book, A lot with a little, purchased at Adelaide Writers Week in early March, a lifetime ago. A third in, it’s disappointingly dull. I put it aside, take up Night train to Lisbon. I’m half way through. It’s beautifully written but hard work. I think about tossing them both, my life’s not this long, I have a stack of other books unread.

I weed the garden for an hour. It’s hot, humid, reminds me how unfit I am.

Stepdaughter 1 and Boyfriend cook dinner, a dish new to us: turkey mince pasta. It’s delicious but I can taste the cider vinegar. I do not like vinegar in food. Vinegar, to me, is a household cleaning product. John suggests they use wine instead next time.

After dinner, Boyfriend tells some stories. We’re establishing a ritual: after dinner storytelling. It’s been mostly John and me with stories from our lives, the children’s childhood, many stories Stepdaughter 1 hasn’t heard before, we haven’t spent a lot of time with her as an adult. Now Boyfriend is starting to tell some. I feel hopeful.

April 5

A friend tells me she’s loving having her four kids at home, no after school or weekend sports, more family time together. On Facebook, games mushroom. A friend starts a group sharing yoga videos for Auslan users. Another describes how isolation is making her feel disconnected from people, muddled in her thinking. We all need time to make sense of this new way of living, create new daily routines.

John and I plant seeds in punnets. A jasmine vine sprawling over the fence from a neighbour’s garden, for years a perfumed joy, has mysteriously died. Near a corner, behind a lavender bush, we struggle to cut it down.

Television is now too infected with Coronavirus. We sign up to Netflix and watch movies.

Good Friday

Food. Life seems to be a lot about food. We can’t plan anything much but we can plan meals, so a lot of energy goes into planning a week’s meals, writing shopping lists, shopping while trying to social-distance, finding space in the fridge and freezer, cooking, cleaning up. Shopping was something we often did on the fly, several times a week. Now we try to do only one large weekly shop. Food, and rituals around it, gives our days some structure. It’s also making me fatter.

We go walking. At the house at the end of our street, I pause to talk to the goose. She waddles to the fence, fixes me with a beady eye, listens attentively. “Hello Goosey. How are you today? Are people being kind to you?…” I love this goose. Other locals do too.

We’re getting better at this, walking most days. More committed, Stepdaughter 1 and Boyfriend walk daily for longer.

April 11

Breda and I catch up on Skype. We’re more settled in this isolation lifestyle now. We share concerns about mutual friends who are struggling. Somewhat guiltily, we confess we’re actually quite enjoying isolation. We both love our homes, have many mutual loves: reading, gardening, watching movies; Cameron has an extensive DVD collection.

Cam and Rowan join us briefly. Rowan, home from uni, studying online, tells me he’s had to reclaim his room from the storage room it had morphed into. “Are you retraining your parents?” I ask. We laugh.

Behind them, vintage glass doors, shelves of books, a sun washed room. It’s so beautiful it sings, a lilting visual melody.

Easter Sunday

We cook roast lamb, the four of us enjoy after lunch stories around the table, we laugh.

I bake a devil’s food cake. John makes the icing, he says I don’t make it thick enough. At three o’clock we cut the cake, lush and perfect with tea, and chat over Zoom with John’s brothers and sister. Zoom doesn’t work particularly well, people talk over each other, are difficult to understand, I can’t lipread anyone, but it’s worth it just to see them.

My mother phones on the TTY. She’s the only person I still use the TTY to talk with. I’m missing her, she’s normally here with us for Easter.

Late afternoon we chat on Skype with Stepdaughter 2. John talks with her often on the phone but I haven’t for a while. She looks happy.

April 13

John is grumpy. Flight Centre is still not talking to us. I get grumpy too.

I go into the garden, spread fertiliser, give everything a thorough watering. It’s deeply satisfying to be in the fresh air, nurture living things.

Lying in bed, we discuss what’s testing us. Our travel refund is driving him spare; his obsession with it is driving me spare. We’re concerned about how Stepdaughter 1 and Boyfriend spend their time. It’s their journey, they need to figure things out for themselves. But we feel responsible to try and nudge them along. I feel I have to tiptoe around other people’s messiness, indolence, grumpiness. I expect it’s a good thing to practice patience and calm, but a part of me resents it. Why can’t I be grumpy and have everyone else tiptoe around me? They probably feel they do!

We laugh, roll over to sleep, love wins.

April 14

We decide to do something constructive together and clean out kitchen drawers, insert new non-slip liners.

On the end of a long orange pole, John sticks a little metal bucket I found for $3 months ago at Vinnies and we use it to pick paw paws. The tree is too tall now, the bucket safer than a ladder.

Coronavirus case numbers are steadily declining. We are buoyed.

April 17

It’s our 16th wedding anniversary and we can’t go out to celebrate. But we often don’t anyway. A nice meal, some wine, we are content.

We’re falling into a kind of routine now, our days have a rhythm we hadn’t managed to achieve in the four years we’ve both been retired.

The seeds we planted in punnets are unhappy. Only one has germinated.

April 19

John makes pancakes for brunch. They’re delicious. Boyfriend and I eat ours with maple syrup. I wish I hadn’t finished all the bananas.

Our neighbour’s son is fourteen today so after lunch we walk up their driveway, stand far apart, chat for a while. They’re good neighbours, we’re fond of them. Son seems delighted with our gift, fresh ravioli and a tub of home-made pasta sauce. He’s enjoyed it before at our house. We’ve included dessert, a few small Picnic bars, the last of our stash.

Sue’s cryptic quote on Facebook worries me a little. “Are you stressed?” I ask. She replies privately. She’s worried about her daughter and six months old grandson, expats in Argentina. They need to come home. She’s managed to get them onto a flight organised by DFAT on Anzac Day, flying into Melbourne. They’ll have to quarantine there for fourteen days before flying home to Brisbane. Daughter is happy they’re coming home but upset she has to leave her beloved cat behind.

April 20

Finally Gaye replies to my latest text asking if she’s ok. She says she’s not bad, still a bit down but perking up. My relief is palpable. It’s so difficult when someone I love goes into a funk and won’t talk. To me, it’s the worst way to deal with feeling down, and makes everyone else worry, feel helpless.

There are no new cases in Queensland for the first time. We’re winning!

After dinner, minor bickering between John and me morphs into a discussion about relationships. I’ve never talked much about this with Stepdaughter 1. We laugh a lot.

John is still obsessing over our travel refund. He’s in a couple of Facebook groups, thousands of angry people all trying to get their money back from Flight Centre. I tell him I’m thinking about running away.

April 23

It’s John’s birthday. How to celebrate in isolation? I give him a card from our stash, with a $50 note inside. It’s silly but it feels wrong to let his birthday go by without giving him anything at all. One day when isolation is over, we’ll go shopping, buy something he likes, probably for a lot more than $50.

I make another devil’s food cake, with ridiculously thick icing.

Stepdaughter 2 comes for dinner. It isn’t absolutely clear but we think it’s allowed under the two-people-can-visit rule. She brings him flowers: a sunflower, white gerberas, everlastings. John is delighted, says, “How very unsexist of you!” Stepdaughter 1 and Boyfriend give him a Bunnings voucher, his favourite. We cook roast lamb again, have cake with a candle, which John “blows out” with a brisk wave of the knife.

He’s had a splendid day.

I read about a report released by the Commission for the Human Future: researchers and citizens led by John Hewson. It identifies ten risks to life on the planet, says this pandemic offers an opportunity for rethinking society and policy reform to build societies focused on natural and ecological security rather than economic growth as the key success indicator. I feel hopeful.

The PM talks about “harvesting” ideas for economic and tax reform after isolation ends. It sounds depressingly like everything he’s ever said before. Only “harvesting” is new. I feel despair.

Anzac Day

We bake Anzac biscuits, leave half in the kitchen for Stepdaughter 1 and Boyfriend, take half downstairs.

Stepdaughter 2 sends us the lyrics and recording of a new song she’s written for guitar. The lyrics are lovely. John says the music is excellent too.

A neighbour sends photos of her family standing in their driveway for the “light the dawn” street memorial. “We missed you,” she says. I feel rebuked.

I reply, explain: We don’t do dawn services. They aren’t inclusive, don’t usually have Auslan interpreters. Instead, we watch them on TV with captions, much more meaningful for me.

I know she probably didn’t mean it as a rebuke, had just hoped to see us. I’d mulled over this, suspected some people would look askance at neighbours not participating. I’d have liked to participate in this unusual Anzac salute, this community spirit, but knew that as a deaf person it would be difficult, even just communicating with neighbours in the dawn’s faint light. Community spirit, such a fine thing, can be unwittingly judgemental. I feel hurt; and I feel silly for feeling hurt.

John and I go walking and I talk to the goose, feel better.

April 27

Overnight Stepdaughter 2 posts a video on Instagram, a song she composed about isolation, for fun. She sends us the lyrics and we laugh. It infects my head all day.

Flight Centre calls, offers us a full refund of land tours and flights, partial insurance refund; we will have to pay $600 cancellation fee. This is much better than vouchers on the never never, we know there’s no way they will refund everything, they want to survive. John accepts the offer, forgets to ask when the refund will be processed.

There is a sudden rainstorm. I take my half-drunk tea out to the patio, sit and watch it drench the washing, bend the roses with its weight. It brings vitality to the garden, a world washed clean, hope.

Lessons from Dimity

17 Friday Nov 2017

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Dimity has been in the news and upset the deaf community again. Nothing like she did last time, but still…

Our outrage is always essentially the same. How can she keep getting away with the things she says about deaf people? How can hearing people keep believing what she says and keep giving her awards?

She keeps on confounding us! She keeps on winning!

So I’ve been thinking: what can we learn from Dimity?

For those who might not have heard of Dimity Dornan, she is a speech pathologist and the founder of the Hear and Say early intervention centres for deaf children. Hear and Say promotes the use of cochlear implants, hearing aids and auditory verbal therapy (AVT) to teach deaf children speech and language. AVT does not allow the use of sign language or any kind of visual cues, including lipreading.

I know Dimity. I’ve met her many times.

Dimity is very charming. She’s very polite. She shows what comes across as a genuine interest in you as a person. She is, dare I say it, classy!

Several years ago after a deaf community uproar over something she said at an awards ceremony, I met with her at her Hear and Say centre in Brisbane to discuss the issues. The Auslan interpreter was a little late arriving so while we waited Dimity and I had a pleasant chat, relying on my speech and lipreading skills.

Our innocuous little chat came around to the subject of teapots. I love teapots. I told her about the beautiful Russian teapot I’d recently brought back from Alaska. Dimity seemed delighted. Did I like china teacups too, she asked. Oh yes!

Several months later, she invited me to talk with her staff about my experiences as a bilingual deaf person and Deaf Australia’s views on bilingualism. Afterwards, a staff member gave me a gift from everyone: two pretty tea mugs, not expensive but charming.

This simple gift conveyed a powerful message. It told me that Dimity is a thoughtful person. She listens. She’s generous and gives you things she knows you will like. She knows how to make you feel good. She knows how to show you she’s a nice person.

Dimity is well-known, well-connected.

Prime Ministers, Premiers, government and influential people know her. She works hard at networking and building relationships. Presumably she is charming with these people too.

Influence is the most effective form of advocacy. Sometimes being tough and demanding and kicking up a stink does work, but in the long term we achieve far more by building respectful, courteous relationships and using our connections to influence decision making.

I once had a conversation with an influential person who, rather indiscreetly, commented on another deaf advocate. The influential person was sympathetic to the issue I had raised and which this other advocate had also discussed with them but, the influential person told me, the other advocate had put them offside by being rude, demanding and aggressive.

So that’s the first thing we can learn from Dimity. Relationships matter. Manners matter. When we are courteous and build respectful relationships, it is harder for other people to dismiss us.

Dimity is positive.

Publicly she doesn’t openly, obviously and directly trash Auslan or deaf people who use it. Instead she talks about how beneficial speech is. She talks about how wonderful her speech and hearing program is and ignores other wonderful programs, especially bilingual programs. She politely and self-deprecatingly shuts down attempts to discuss Auslan: “I don’t sign well. I leave that to others who can.”

Over the years, I learned to be careful how I discuss programs like hers. I learned to compliment her on her speech training program, and to be clear that our issue is not with speech training, but with the exclusion of Auslan and families who want to give their deaf children access to both speech and Auslan.

This is something we do need to be clear about. Often when we talk about the importance of Auslan, people assume we are excluding speech and English. We need to be clear that we are advocating for bilingualism: for deaf children to have early access to both speech/English and Auslan.

Dimity is well groomed. She dresses appropriately well for the occasion and she always looks good.

In my late twenties, I attended a week-long residential leadership training program organised by the Deaf Society of NSW, along with people like Colin Allen and Carol-lee Aquiline, both now well-known deaf leaders. The program included a workshop about grooming and how important it is, for both men and women, if we want to have influence.

One day many years ago, I sat with many other people at a large table at the Australian Human Rights Commission in Sydney, waiting for a meeting to start. My advocacy colleague walked in hurriedly and sat down beside me. I looked at her. She was on time – just – but her hair was messy and her top, a smart, appropriate top, was rumpled.

“Did you iron that top?” I signed quietly.

“I know!” she signed apologetically. “I ran out of time to iron it! Sorry!”

A messy, rumpled appearance, whatever our gender, gives the message that we are disorganised, possibly incompetent.

I believe my colleague has since learned this lesson; whenever I see her now she looks smart and well groomed.

Whether or not we agree that grooming should be important, in our society it is.

Dimity has won many awards and she and her Hear and Say Centres are often in the news.

Now, I know that getting on the news is not easy. It’s probably easier to win awards. Winning awards can actually be a good way to get on the news.

To win awards we need someone to nominate us, or nominate ourselves.

The deaf community is not good at this. We don’t nominate enough of our achievers for awards. We don’t nominate successful programs and organisations for awards. Instead of criticising, which our community is very good at, we need to show pride in our achievers and promote them.

People often criticise achievers for having a big ego. Some do have large egos, but being an achiever doesn’t automatically mean a person has an outrageously large ego.

I once watched a TV interviewer ask Bob Hawke about his ego.

Bob Hawke replied, “If you don’t have confidence in yourself, how the hell can anyone else have confidence in you?”

Our deaf community needs to understand this. Without confidence in themselves, i.e., a certain measure of healthy ego, our deaf achievers aren’t able to go out there and be achievers. When they go out there and achieve things, they promote a positive image of the rest of us and our deaf community. When we publicly criticise them, we diminish not only them but ourselves and our community. When we support them and promote them, we also support and promote all of us and our community.

Dimity is careful with research.

She publishes research on children who graduate from her Hear and Say program and this research shows the program is highly successful. There are many deaf children with cochlear implants and hearing aids who do develop good speech and listening skills and good English language skills by the time they start school.

Many people impressed by this research do not realise that it excludes children who do not do well. These children leave the program and move into other programs elsewhere, usually bilingual or sign-based ones, before they reach school age. The research reports do not acknowledge that this happens. Instead, if they do mention them, they say that X number of children tested at the beginning of the research “moved away or were unavailable for testing”(1) later in the research.

It’s tempting to say that other types of early intervention programs could do something similar. Since many children in bilingual and sign-based early intervention programs start off in speech and hearing programs like Hear and Say and enter other programs late, their delayed language development adversely affects these other programs’ reports, making them appear less successful. So these programs could exclude these late-entry children from research.

But it’s not that simple. Bilingual and sign-based programs include children with many more variables than those in auditory-verbal programs like Hear and Say. Still, it’s food for thought. At the very least, we need to be making this information about research more widely known.

Dimity does not try to persuade bilingual supporters that they are wrong. She ignores them. She doesn’t talk about bilingualism, she gives it no airtime.

Maybe it’s time we stopped trying to persuade Dimity and professionals working in programs like hers that they are wrong to exclude Auslan. Instead we could focus on promoting the importance and benefits of bilingualism to a wider audience.

Once, in a meeting with Bill Shorten, when he was Parliamentary Secretary for Disabilities and I was trying to persuade him to provide government support for bilingual early intervention, he said, “I know nothing about these programs. What do they look like?”

I briefly explained how they work and suggested he visit the Aurora School in Melbourne. But I didn’t feel I had answered his question well.

We need to be better prepared to answer questions like this. We need to be able to show bilingualism in operation. We need video clips of successful bilingual deaf children. We need these video clips on line and in TV shows and adverts. We need to be at the point where people don’t have to ask us the question Bill Shorten asked, because they have seen videos of bilingual programs often.

And we should stop spending so much energy trying to persuade professionals to provide ‘unbiased’ information to parents.

They won’t. We’ve been trying to do this for decades and the only thing we have achieved is biased professionals who pay lipservice to bilingualism and Auslan with comments such as “I have nothing against sign language.”

Instead we need to be educating parents to recognise and understand the biases and why particular people have particular biases – including our own biases towards bilingualism. This would help parents be more fully informed and empowered.

Most of all what we can learn from Dimity is to stop worrying about what other people say.

Does Dimity spend a lot of time worrying and talking and protesting about what we say? I doubt it. She is too busy focussing on achieving and promoting the things she believes.

We need to do the same.

 

1. http://www.hearandsayresearchandinnovation.com.au/UserFiles/files/Publications/Dornan%20et%20al_,%202010_%20Is%20Auditory%20Verbal%20Therapy%20Effective%20for%20children%20with%20hearing%20loss.pdf p365

Good Grief

30 Monday Oct 2017

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In the past year, just over a year, three people I loved dearly have departed this life. My father in July 2016. My friend of 25 years, Ann Darwin, in January 2017. And my friend of 41 years, Tricia Giles, in July 2017.

All of them left us too soon. Although my father was 88, he was fit and healthy until a skin cancer claimed him. Ann was 69 and Tricia was just 60. Cancer took them all.

So thinking about dying and living well has been much in my thoughts for a while. I didn’t realise quite how much until John said to me one night, quite crossly, “You always do this when someone dies!”

“Do what?” I asked, surprised.

“You go on about how we need to be doing more with our lives, as if we’re not doing anything when actually we are!” he said.

He had a point. Since we retired, our lives are slower, we have time to enjoy things we like, to plant and smell the roses and have coffee with friends, but neither of us sits around doing nothing, we are always occupied and going places.

But still, I think a lot about how to live better, how to make the most of my time, what’s really important. These things have different meanings for all of us, but lately I’ve been reflecting on what I learned from Dad, Ann and Tricia and how I might put their wisdom to best use in my own life.

Of course I learned many things from all three of them but there are particular things I think about now.

My father taught me the importance of a simple, honest life.

It’s how he lived his life. He was a farmer. He liked growing things. Even after he retired from sugar cane farming when he was 80, he tended his fruit trees and his garden and he loved mowing his vast lawns on his ride-on mower. He lived simply, worked hard, ate sparingly, looked after his family and contributed to his community.

When we were small, he was the chair of the school P&C and always turned up to help at school working bees, fetes and other occasions. He coached and refereed community basketball. He organised the indoor bowls club he and Mum played with for years. He and Mum organised local dances and for 25 years they taught high school students to dance. He was always on some community committee including the local Leukaemia Foundation branch and the Seniors club.

He didn’t hanker after more possessions or experiences or wider horizons. He was happy tilling his little patch of earth and keeping it and its inhabitants healthy and happy.

In his garden, which one of his grandsons now tends for Mum, are many different plants. One, a simple low-growing plant with bright yellow daisy-like flowers we call “Grandad’s daisies” because he was particularly fond of them.

During the six months before his passing, when he was unwell and we knew his time was near, John commented to me one day that it was sad that Dad had such a short time, only eight years, to relax and enjoy life after he retired.

I thought about that and said, “No. He lived his life the way he wanted. He liked farming and was his own boss for 60 years, he did what he wanted and he was happy, he always enjoyed life. He just enjoyed it differently after he retired.”

Ann taught me the importance of forgiveness and a good laugh.

Ann was involved in many deaf community organisations and gave a lot to her community for decades. We worked together within Deaf Australia, advocating for deaf people’s rights.

She was devoted to her family and often talked about them. A hard task master, family was the only acceptable reason for non-attendance at an event or failure to complete a task on time.

Advocacy can be adversarial, friends can behave like enemies and enemies can sometimes be our friend. Many people made our work difficult and sometimes people hurt us. Ann often said, to me and others, “Put it behind you, move on, think positive.”

Often after a hard day’s work, we’d sit on my back deck or at her kitchen table, with a glass of red wine, talk things over and put things into perspective. And we’d laugh, Ann had a wonderfully dry sense of humour.

Ann and her husband Barry retired a few months apart when they turned 65. They did some travelling, spent a lot of time with family, especially their two young grandsons, and continued to be involved in the deaf community.

Her passing was unexpected and shocked a great many people. She lived in Melbourne and after I retired from Deaf Australia we talked on Skype from time to time but I hadn’t talked with her for a while. This bothered me a lot. She knew I loved her, I had no regrets there, but it had been too long since I’d last talked with her. I thought a lot about that and how important it is to keep in contact with people we love. But I also knew that Ann would have said, “Life is busy. I know you think of me.” Forgiveness matters.

Tricia taught me the importance of being practical and using our time well.

For her this meant doing what we want rather than what others might want, and spending time with those most important to us. Of them all, Tricia was the one most prepared for her passing. When her cancer was diagnosed almost four years ago, she knew her chances of surviving were not good.

She retired from work. She figured she had enough money to live on for three to five years and she didn’t love her job so much that she wanted to spend possibly her last years doing it.

One day I asked her, “What will you do if you’re still here in five years?”

“I’ll have to get another job!” she said, laughing.

Tricia loved the freedom of being retired. She spent a lot of time in her garden. A few years before, she’d had the pool filled in and created a beautiful native garden. She did her research and was very knowledgeable about natives, especially grevilleas.

She did some sporadic travelling, to Bali and within Australia.

She had about two years of remission. When her cancer returned and she knew it was terminal, she set about putting her affairs in order. She did some things she wanted to do for people she loved. She spent as much time as she could with the people most important to her, especially her two children and her siblings. They were wonderful and made it possible for her to die at home as she wanted.

She spent some time alone too, reflecting. She didn’t live very differently to how she’d always lived, but she lived her last years exceptionally well, focussing on what meant most to her.

Living well means different things to us all. This is what I think about a lot. What does living well mean for me? What am I here to do; what have I not yet done that I must? If I knew I had only a short time left, how would I live my life? What would I do differently?

The answer I keep coming back to is simple. I wouldn’t change anything much. I’d do a bit more travel. I’d do a lot more writing. Spend more time with people I love. Tend my garden. Knit. Eat less. Be kind to people.

I like my life. I feel I’ve lived it well. Not everything has happened as I would have liked it to, not everything I wanted from life has been mine, there has been a lot of anguish and a lot of struggle. But it has been a good life, rich in people and experiences. I feel very fortunate.

Death and grief are things we don’t talk about much in our society. We should talk about them more. For over a year now I’ve been talking about them often with people around me, people who loved Dad and Ann and Tricia too.

We talk about how much we miss them. We reminisce about things we did with them. We talk about things happening in our lives and we ask and tell each other: “What would Dad do?” “Ann would say to smile and let it go.” “What would Tricia say?” We wonder where they might be now. We talk about what we believe about the afterlife or lack of it. We tell funny stories about things that happened with them and we laugh sometimes until we cry.

A very special thing that has come from Tricia’s passing is that I have gained a new friend. Jude and I have known each other a long time, but not well. For me, she was always Tricia’s friend. Likewise for her, I was always Tricia’s friend. Now, helping each other with our grief at losing her, we are becoming good friends and it’s like a wonderful gift from Tricia. Just last week, talking about our mutual much loved friend, Jude and I agreed that what we feel is a lot like feeling homesick.

All of us are grieving something or someone. Some don’t talk about it; instead their grief comes out in strange ways, behaviour that is perplexing for others around them.

But for those of us who do talk about it, for me anyway, there is something enriching about grief. It makes us think about what’s important, what we like about our lives and ourselves and what we want to change.

For me most of all it is about being grateful. Grateful for everything I have, and grateful that I had everything I’ve lost.

‘Tis the season for forgiveness

18 Sunday Dec 2016

Posted by in Hearing and deaf

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Soon it will be Christmas. ‘Tis the season to be jolly and spend time with loved ones. For most of us deaf people it’s also the season for great angst – as I wrote last year:  https://lifeanddeaf.net/2015/12/09/christmas-angst-is-coming-to-town/

This year I’ve been thinking a lot about acceptance and forgiveness.

When I was in my thirties, a friend, let’s call him Sam, hurt me deeply and I struggled to deal with my emotions about it. Sam wanted to meet to discuss what had happened but I just wanted to shut him out. During a conversation with a mutual friend, let’s call her Jane, I asked: “What does forgiveness mean?”

Sam could, I told her, tell me he was sorry, he could say sorry a thousand times but it wouldn’t change what he had done and it wouldn’t remove the emotions I was feeling.

Jane said she thought forgiveness meant giving Sam the chance to talk things over with me, sharing with him what I was feeling and the effect his actions had on me; it was about allowing him into my confidence, not shutting him out.

I thought about it and agreed to meet Sam and we talked for a long time. Sam struggled to understand my point of view because he genuinely was sorry and couldn’t understand why I couldn’t let it go, but he listened. And finally he said: “I understand now. I have lost your trust. And I need to work to rebuild that trust.”

Sam and I are still friends. Our friendship is different and both our lives have changed, but we are still friends.

From that experience I learnt a lot about forgiveness, lessons that have made my life much richer.  But forgiveness and acceptance mean different things in different situations and relationships and I’m still learning new things about it.

My father died a few months ago.  He was a lovely man in so many ways, kind, generous, tolerant, and I loved him deeply, just as I know he loved me. But ours was not an easy relationship simply because I am deaf and communication was difficult. As is common with many fathers of deaf children, he largely left the communication to my mother. 

After I left home, my parents often visited me wherever I was living. Most years I spent some time, usually in the summer, with them at the Far North Queensland sugar farm where I grew up. I went swimming with Mum and watched the cricket with Dad. It was the only time I ever enjoyed cricket. 

As we got older, Dad and I both made more effort to communicate more directly with each other but our communication was always more limited and never as easy as that enjoyed between him and my siblings.

Of course I could say that he could have learned to sign, as could all of my family. I just never expected that of my childhood hearing family. I was born hearing and became deaf when I was eight, after I had already acquired fluent English and speech.  As happens for so many people, the ‘experts’ told my parents not to let me sign. When I did learn Auslan in my twenties my mother asked one day if it would help if she too learned.  Although touched and grateful for her offer, I told her not to worry about it. She and I already had quite easy communication. I just always accepted that signing isn’t part of my relationship with my parents and siblings.

My father was 88 when he died and I was almost 60.  For others an easy man to know, he was much loved within our large extended family and his local community. Throughout my life I thought a lot about our relationship and I grieved for it, I wished we could be more close.

A few years before his passing, I realised that our relationship wasn’t going to change, there wasn’t really anything either he or I could do to change it.  It was what it was. 

I also realised that I actually did have a good relationship with my father and I did know him well.  My knowing him was based less on verbal communication and more on observing, doing, sharing and just hanging out together. 

And so I reached acceptance and forgiveness – of both him and myself – and I was able to let my father go with love. Now I grieve only that he is no longer here. This will be our first Christmas without him.

The feeling of not being close to or knowing our parents well, especially our fathers, seems to be common among deaf people who grow up in hearing families.  Recently I was discussing this with a deaf friend who told me that at her father’s funeral her siblings shared stories about him that she hadn’t known before.  One day she mentioned to a mutual acquaintance, a very down to earth deaf woman, that she’d recently been to her father’s funeral. Before she could say anything about it, this understanding woman said kindly: “And you learned something.”

This experience with my father has changed how I think about these things. I understand that many (but by no means all) deaf people do experience very difficult relationships with their parents. But I wonder now if we give too much emphasis to the verbal communication aspects and see things too much only from our own point of view.

I do believe that most parents try to do the best they can for their children. They don’t always get it right or get good advice from experts or the support they need.  It can be incredibly hard and heartbreaking for them.

I wonder now if perhaps more of us would find acceptance and forgiveness, be happier and healthier if we tried to understand our parents’ experience as well as our own and if we treasured more the non-verbal and doing aspects of our relationships with them. 

Every relationship is different, as is every acceptance and forgiveness. Some things we accept and forgive without fully realising it. For people who are regularly treated poorly, this can become something we do automatically as a form of self-preservation. It isn’t good for our own health to get upset about every insult and injustice.

In the early 1990s when I was a librarian at the State Library of NSW I was out one day with my hearing boss. I had purchased my ticket for some forgotten event and was waiting nearby for Val to buy hers.  Preoccupied with people-watching, I was startled when Val joined me, all upset. 

“What’s wrong?” I asked her.

“I just told that ticket seller off,” she said. “Did you know how rude she was to you when you were buying your ticket and had trouble understanding what she was saying?”

“Oh that?” I said. “That stuff happens all the time.”

“Really? I had no idea! How can you put up with it?” she asked, shocked.

“You just do,” I said. “If I got upset about it every time it happens I’d be a nervous wreck.”

We might turn a blind eye to people who are rude to us because it’s not worth the emotional energy of trying to – usually unsuccessfully – challenge it. Sometimes forgiveness means letting go and moving on.

But it doesn’t mean giving up and putting up with all the terrible ways that people and society often treat us.  

It was Val who one day told me that in every difficult situation we always have three choices: accept it, change it, or leave it. I have often used this bit of wisdom in all kinds of situations and generally I find it to be true.

But sometimes it isn’t practical. Not for us deaf people.  Some things are unacceptable, leaving the situation may not be in our best interests and changing it is difficult because change depends on other people changing their behaviour.

This is true of things like abuse of our rights, poor education, prejudice, discrimination in the workplace, exclusion from the community.  In these situations we can adopt a form of acceptance and forgiveness (“for they know not what they do”) while we do the long-term work of changing it. 

Many deaf people find this very hard to do. So many are angry. So many are terribly hurt and damaged by the treatment we receive. Quite understandably they rail against the injustice and demand their rights in ways that achieve little if any change. And so many struggle with mental health issues.

For 30 years I dedicated my life to advocating for the human rights of deaf people. I loved it and am proud of the advances I helped achieve. In many ways life is better for us now than it was 30 years ago. In some ways it isn’t and some of our achievements are being eroded, especially by mean-spirited governments. There are still a lot of ignorant and uncaring people out there and we still have a long way to go.

I believe now that our society is not yet mature enough to accept deaf people, or indeed disabled people in general, as equals.  Hopefully one day it will be, and it’s important that we all continue to work towards this, but it’s not going to happen anytime soon.

Have I given up now that I’ve retired from active full-time advocacy? No way!  I still believe advocacy is vital and I still help Deaf Australia a bit behind the scenes, still support and encourage friends in their advocacy efforts.

But I believe that we all need to find some kind of acceptance and forgiveness that makes it easier to live our lives in positive, healthy ways.  I believe that we all spend too much energy focussing too much on the hurt and the negatives. We need to change how we think.  We need to focus more on the positives in our lives.

The negatives will still be there and we will still need to work at changing them.  But when we accept, forgive and count our blessings (and we all have some) we are stronger and more able to cope with the negatives.  We are more able to keep them at a distance and live our lives with health and happiness.

A good place to start is with our own families this festive season. We could do what Sam and I did all those years ago. We could allow them into our confidence, talk things over with them, share with them what we feel and listen to their point of view. We might be surprised by what we learn.

Or if that’s too hard, and for many people it will be, we could do what I did with my father. We could think about how love takes many forms. It’s not all spoken. Much of it is based not on verbal communication, but on observing, doing, sharing and just hanging out together. 

I wish you all a joyous and forgiving Christmas!

 

Christmas angst is coming to town

09 Wednesday Dec 2015

Posted by in Hearing and deaf

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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