Category Archives: Hearing and deaf

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

‘Tis the season for forgiveness

18 Sunday Dec 2016

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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!

 

Checkout Chats

19 Tuesday Jan 2016

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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

09 Wednesday Dec 2015

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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?

14 Tuesday Jul 2015

Posted by in Hearing and deaf

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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.

Deaf is good in a noisy neighbourhood

23 Thursday Oct 2014

Posted by in Hearing and deaf

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bonfire photoMost hearing people never think about being deaf in terms of what is good about it. But many things are and in a noisy neighbourhood deaf people live more peacefully than many hearing people.

And because many of us deaf people seldom think about noise we are often surprised by how annoying it can be for hearing people.

Recently a group of young people moved into the house behind us and are making a bit of a stir in our neighbourhood. They were quiet for a few months but a couple of weeks ago my hearing husband, John, was woken by loud voices at 2.00am. He got up and looked out the window to see a huge bonfire in the neighbours’ yard with people standing around talking and laughing.

Half an hour later they turned on the loudest car stereo John had ever heard.

By now, John told me the next day, the whole neighbourhood must have been awake and he was considering calling the police.

“I mean,” he said, “come on! Two-thirty in the morning! Who can possibly think it’s ok to start playing Techno music full bore at that time of the morning!”

Around 3.00am all went quiet.

Throughout the disturbance I slept blissfully on. Loud neighbours are no bother to me.

This particular house directly abuts a lot of other houses: it shares its fences with a total of seven houses. So they have a lot of close neighbours to upset.

Last weekend they had another party, although much earlier in the evening. I was washing up when a bright light made me look out the kitchen window. I watched a group of people in the neighbours’ yard and realised they were setting up a bonfire.  Ooh, I thought, another bonfire party tonight!

The bonfire wasn’t especially large and, according to John, not particularly loud. However, around ten o’clock he heard arguing. At first he thought there was a fight among the partiers but soon realised it was one of our other neighbours confronting them over the noise.  Later he heard an angry woman’s voice calling from a nearby house: “Do you want me to call the police?”

“Call them!” yelled back one of our young neighbours.

While I had a lot of sympathy for the nieghbourhood the first time, last weekend I had a lot for our young neighbours. Kept under control, backyard parties are fun, we’ve had a few ourselves over the years. It was not particularly late on a Friday night, in fact a bit early to be calling the cops. Perhaps the irate neighbours were concerned it was going to be another loud and long night.

Generally our neighbourhood is pretty quiet, but when neighbours are noisy, it can be intensely irritating for John, and presumably others.

A long-time neighbour has a penchant for mowing her lawn in the middle of the day. It’s a big yard and she gets tired so she stops every now and then to have a smoke break and leaves the mower running. It drives John nuts.

Another neighbour has a truck that makes a loud beeping sound when it’s reversed. Almost daily John tells me, “the truck is coming home,” and then, “beep, beep, beep…jeez!”

It must be hard to be a hearing person sometimes. Obviously noisy neighbours don’t bother me and some hearing people seem able to tolerate it, but some people, like John, are sensitive to noise. It really upsets them.

We once had a neighbour who slammed her windows shut whenever John was using power tools in the garage. Her husband reassured us the noise was no problem but it clearly upset her.

I pity these hearing people. I really do. Possibly in a way similar to the way so many hearing people pity us deaf people. I sometimes tell John he would be happier as a deaf person. Of course this isn’t entirely true, especially since he loves music and would miss it immensely, but he would certainly live more peacefully, as I do, in a neighbourhood that is sometimes very noisy.

Whether we are deaf or hearing, life is imperfect. Some things that bother others don’t bother us. Some things we adapt to. Some things we tolerate. Some things drive us nuts. Some things we secretly wish we could do ourselves.

I’m thinking about gate crashing the next bonfire party. I’m sure the young people won’t mind and it’s not as if the sound of irate neighbours is going to bother me while I frolic in the firelight, is it?

Do you know (or are you) a hearing person who would live more peacefully as a deaf person in a noisy neighbourhood?