Who’s disabled?

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

My sister stopped lolling and stared at me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So who’s disabled?

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

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

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

To do our civic duty

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Jury Duty 5

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Notes:

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

She’s got an eye!

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

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

So according to Kate, nothing unusual was happening.

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

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

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

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

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

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

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

This was scary.

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

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

It was obvious I needed to see an eye specialist.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She too looked confused.

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

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

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

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

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

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

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

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

You raise me up so I can stand on mountains

You raise me up to walk on stormy seas

I am strong when I am on your shoulders

You raise me up to more than I can be

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

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

“I’m great!” I said.

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

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

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

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

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

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

We laughed.

It became a joke for us.

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

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

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

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

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

“Why?” I asked.

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

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

“That’s what Avril said!”

We laughed. Such a lovely brother!

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

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

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

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

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

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

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

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

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

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

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

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

It almost felt like losing an old friend.

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

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

Sticks in the forest

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But right now, Deaf Australia needs us.

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

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

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

Deaf clubs – Part 3: A new deaf community meeting place

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Question Mark[1]

For some time, many of us in the deaf community have been saying we need a modern version of the deaf club. We loved our deaf clubs but the old format will no longer work. The world has changed. The community has changed.

Deaf Societies are still very important organisations but they are now only one of a number of organisations providing services for deaf and hard of hearing people.

There are still sections of the deaf community who are either dependent on Deaf Societies for welfare-type assistance or who have a long association with them and are unready or unwilling to consider other options.

However, many deaf people are now quite independent of the Deaf Societies. Many people rarely visit or contact their Deaf Society, even if they use their interpreting service – interpreting bookings are made by the person who pays, which is not usually the deaf person.

If the NDIS is rolled out according to the model set out by the Productivity Commission, deaf people’s choice in where they go for services should increase as new providers emerge.

Early intervention services that historically focussed only on speech and separated themselves from the deaf community are now being encouraged to be more inclusive and collaborative. (However, I recently heard some information that indicates this change is turning back towards excluding Auslan from early intervention – but that’s the subject of a separate blog post).

As the experiences of deaf communities in Sydney, Melbourne and Brisbane have shown, a deaf club in a mainstream setting, divorced from deaf community organisations, is a club that lacks a deaf soul.

The world is moving on from the old welfare and paternalistic one-organisation-does-everything-for-you models and it would be anachronistic for the deaf community to return to such a model, but there is still a case for a deaf community centre that provides a mixture of services, social activities, representative and advocacy support and so on in one easily identified location.

But now it needs to be owned and managed not by one all-powerful organisation but perhaps by many. They do it in Finland and they do it in Ireland. We could do it here in Australia.

In Helsinki, The Light House is jointly owned by the Finnish Association of the Deaf, the Finnish Federation of the Hard of Hearing, and Service Foundation for the Deaf. It provides accommodation to other organisations and services for deaf and hard of hearing people, meeting rooms and an auditorium. In the centre is a cafeteria where everyone mingles. At the front door is a general reception desk that directs you to the organisation that fits your need. (http://www.visithelsinki.fi/en/conference-banquet-facilities/light-house)

In Dublin, Deaf Village Ireland brings together 12 deaf organisations and provides a venue in which all of them can operate collaboratively. It is a company set up to manage the village through a central support structure and aims to provide a location where the deaf community can thrive and work together. Both Irish Sign Language and spoken English are used within Deaf Village Ireland.  (www.deafvillageireland.ie)

It would be wonderful to have something similar in Australia.

As an example, in each of our capital cities and major regional centres we could have a small community centre for deaf and hard of hearing people that houses at least some of these organisations:  Deaf Australia, Deaf Youth Australia, Better Hearing Australia, The Auslan Shop, deaf sports and recreation organisations, self-help groups such as Hear for You and Cicada, a deaf church (office/s if not the actual church/es), ASLIA and various service providers – Deaf Societies, interpreting service providers, Australian Communication Exchange,  Deaf Children Australia, assistive hearing technology providers, early intervention services, adult education services and so on. And a café/bar – managed by deaf people who are trained and paid to manage it.

We could perhaps have something like a strata title or leased building where organisations own or lease the portion of the building that they inhabit and contribute to the maintenance of common areas.

We could have small community centres where no one organisation is more important or powerful than any other, where no one organisation has its name in lights as ‘the’ organisation or ‘the’ building owner.

Is this possible?

I think it would be difficult because only service providers have money; community organisations like Deaf Australia (especially now that government has defunded it), sports and self-help groups, would struggle to contribute to ownership or lease costs. But I believe a modified version could be possible.

It would require some major shifts in thinking in our service providers, particularly Deaf Societies. And it would require deaf and hard of hearing people to take the lead in our own community and make it happen.

An alternative might be a version of what is happening in Adelaide. Perhaps several service providers could contribute to funding separate small community centres for community organisations to run as deaf clubs.

Another alternative might be for simple café/bars, with kid’s corners and Auslan-literate staff, which become deaf community meeting places.

Trade Block café, in the grounds of Deaf Children Australia in Melbourne and staffed by Victorian College for the Deaf students is very popular, but it is small and its hours are limited. An expanded version in various locations around Australia, accessible to everyone, deaf, hard of hearing and hearing, could be a hit. Personally I love this idea.

Whatever option we come up with, it’s important that any new meeting place is ‘owned’ by the deaf community, not by any all-powerful service organisation.

Deaf people are fond of saying that we can do anything. We like to demand our rights.  The community has the capability to run its own deaf clubs but few have stepped up and accepted the challenge. Can we continue to claim we can do anything and yet expect others to continue to do things for us?

We can do this. We can create new types of deaf community meeting places that are inclusive and bilingual places where Auslan and English are equally valued and where deaf, hard of hearing and hearing people, parents and service providers feel welcome, equal and at home.

And then let’s see what kind of modern Auslan sign the community develops for ‘deaf club’.

How important is it to have a deaf community meeting place?  How can we make it happen?

Deaf clubs – part 2: A fragmented community today

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Deaf people at a mainstream restaurant

Deaf people at a mainstream restaurant

Until the mid 1990’s, deaf communities in Australia were centred on their deaf clubs, based at the Deaf Societies. It was a well-organised, active, vibrant community. And then everything changed.

Education became increasingly mainstreamed; deaf students now have less contact with each other and the wider deaf community.

Deaf Societies began having serious money problems. Everything became more expensive, the charity dollar more elusive, government regulations and funding accountability requirements more onerous. Institutionalisation was on the way out.

The focus on community fell out of favour with the Deaf Societies and capitalist-style business models became king. The Deaf Society of NSW closed its unprofitable nursing home and hostel, sold its Stanmore site and leased rooms in an office building in Parramatta. It became more ‘professional’, hived off its community centre and deaf club was no more.

For a while, a small group of deaf people tried to establish deaf pub at Lidcombe Bowling Club. But deaf people didn’t feel connected to it. The soul of the deaf community was absent, its spirit crushed.

The Stanmore site is now part of Newington College. The back of the site can still be glimpsed as you trundle past on the train, but instead of the wide gap with a flash of white and a dash of red, the space where the bowling green once basked in the sun is now filled with a dull brown building. Gone is the romance of a more genteel and spacious era.

NSW started a trend. Only Western Australia and South Australia still have deaf clubs.

The WA Deaf Society hosts it in a small hall with a bar in their premises in a block of business suites where you can’t just walk in after hours, someone has to let you in.

South Australia’s deaf community recently experienced traumatic change when the historic Deaf Society building at 262 South Terrace, Adelaide was sold against their wishes. Early in 2014 Townsend House, which now operates the SA Deaf Society under the name DeafCan:Do at Welland, provided the community with separate club premises at Modbury North for a token rent of $100 per year. Whether the community can recreate a vibrant deaf club in their new premises remains to be seen.

Modern Deaf Societies are run as businesses providing services funded by governments, philanthropic grants and, increasingly, fees for service. They still fundraise but it is unclear how they spend these funds.

They claim to put money back into the community. This seems to mostly take the form of the oft-cited free interpreting for funerals and occasionally ‘community development’ activities such as subsidised youth and ‘professional development’ activities.

In the absence of a regular deaf club, deaf seniors still meet at the Deaf Society or in mainstream community halls and young deaf people meet in mainstream pubs and clubs. These two age groups seldom interact.

In the old style deaf clubs, young and old mingled and learned from each other. In my twenties I had a wonderful deaf colleague and mentor in the legendary Dorothy Shaw, then in her sixties.

Today I meet young deaf people who know little about their community’s elders and seem to assume that deaf people at the pub are the deaf community.

These young deaf people miss out on mentoring from the community’s elders and the lessons of history. Older deaf people miss out on the vitality and new ideas of the young.

Like Irish, Greek, Italian people, regardless of how included they are in mainstream society, deaf people would still benefit greatly from the richness and self-expansion that is found in clubs for ‘people like us’.

We still see our deaf friends face to face in our own social groups and at occasional community events, there are still various sports and interest groups and Deaf Australia is still achieving progress for deaf people.

But without a deaf club to provide a focus and a regular meeting place, much of the old cohesiveness has been lost.

Community events are less frequent, less well attended; groups and organisations are harder to locate and less well supported; everyone is too busy living a more mainstream life and, like the mainstream community, is less able or inclined to volunteer.

Today, although there has been progress, most of our advocacy issues remain the same.

When information was shared face to face in Auslan at the deaf club everyone could understand and participate in discussions regardless of their English fluency or education level. Debates and disagreements happened face to face within the deaf community, policies and strategies were nutted out privately and we presented a mostly united face to the world.

In the modern era of mostly English-based social media, disagreements, one-sided ‘debates’ and misinformation have become public for the non-deaf, unaware of the underlying issues and nuances, to scrutinise and misconstrue. Publicly the deaf community now looks less cohesive than privately it is.

Intimidated by modern cyber bullying and disenfranchised by English text-based discussions on social media, the majority of deaf people are less able to have their say than they were twenty years ago when I regularly walked up the street and around the corner to the deaf club on Friday nights.

The Auslan signs for ‘deaf club’ and ‘Deaf Society’ remain the same. Although there are some ‘deaf club’ nights in mainstream pubs, nothing has emerged to replace the old concept of the deaf club.

We need to find a way to create a modern version of the deaf club, without giving up the gains we have made in access and inclusion.  We need to do this in a way that is not dependent on Deaf Societies.

Deaf Societies are still important organisations for the deaf community, but the world has changed. Although some seem to want to hang onto it, the old welfare model, where one organisation did everything for deaf people, has been on the way out since the 1980s. We need new ways of thinking that take lessons from the past and move the community forwards, not back.

How would you describe the deaf community now? How is it different to how it was in the past?

Deaf clubs – Part 1: A vibrant community of old

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The old 262 South Terrace, Adelaide Deaf club

The old 262 South Terrace, Adelaide Deaf club

Since deaf clubs started closing in the 1990s, the need for them has often been discussed. Recently Vicdeaf and Deaf Children Australia established a committee to investigate the issue for Victoria.

This is the first of 3 posts about deaf clubs.

With the progressive closure of deaf clubs, the deaf community has lost much more than historic buildings. The buildings have been important. But even more, our sense of community and belonging to a place and our easy connection with each other have all been diminished.

Since first becoming involved in advocacy organisations some 25 years ago, I have seen many life improvements for deaf people. Twenty-five years ago deaf people were seldom seen or heard outside the deaf community. Today we are more visible, more included in the mainstream community, with more options.

Most of us, I’m sure, would agree that an inclusive society is a good thing. Inclusion and equitable access benefit everyone, society and, long term, the economy.

But inclusion can come at a cost, and for deaf people it already has; we and our community are poorer in new ways.

Twenty five years ago advocacy was a tough gig. Everyone wanted to patronise you, no one wanted to listen and the idea of government paying for an interpreter so you could meet and discuss an issue was unheard of.

Today our advocacy organisations have strong consultative relationships with governments and industry and, usually, a seat at the table when issues affecting deaf people are discussed, with interpreters paid by government or industry. And yet in some ways it is harder now to be an advocate for deaf people than it was 25 years ago.

At least this is the case until end-February 2015 when Deaf Australia’s government funding will end.  The future for advocacy is now uncertain.

The deaf community used to be more insular, tight-knit and cohesive. “A ghetto”, to people who knew nothing about it. An accepting and nurturing place, to those who belonged.

We met regularly at frequent community events and the deaf club on Friday nights where we mingled across age bands and interests, talked politics and news and nonsense, fell in and out of love, gossiped, told jokes – deaf jokes and jokes about hearing people – and generally enjoyed ourselves among our numerous friends. We played sports, volunteered and socialised together within well supported, well organised clubs, interest groups and advocacy organisations. It was an active, vibrant community, and at its centre was the deaf community centre – the ‘deaf club’.

The deaf club provided us with a powerful sense of belonging.

Deaf clubs were originally established in each state in the 19th Century by Deaf Societies at a time when they were paternalistic benevolent charities providing something for everyone – employment, church services, welfare services, sporting facilities, social facilities.

Most Deaf people worked in the mainstream as tradesmen, in factories, in clerical positions and often the Deaf Society helped them find employment. A few worked for the Deaf Societies in low level jobs.

The Deaf Society was essentially the community’s sole support organisation and many Deaf people were heavily dependent upon it.

The, mostly hearing, people who worked there looked after Deaf people, made decisions for them, knew everything about them and their personal lives, kept files on them.

The Auslan signs for ‘deaf club’ and ‘Deaf Society’ were identical.

When I lived in Sydney in the 1980s and early 1990s, the centre of the deaf community was the deaf club at the Deaf Society in Cambridge Street, Stanmore.

The building housed offices, meeting rooms, a community hall with a stage and commercial kitchen, table tennis and snooker tables, a crèche, a squash court and club rooms with a bowling green behind it. It was a lumbering three story building, white with red trim, which loomed over a predominantly residential street a scant ten minute train ride from the city centre. Next door, across a small grassy park was the dark brick Gordon Davis House hostel, and behind that a nursing home. All for deaf people who used Auslan.

For several years in the early 1990s I lived in Cavendish Street, one street from and parallel to Cambridge Street. Many an evening found me at the deaf club volunteering on one or another committee. There I acquired skills that, because of communication barriers, I was unable to learn in the mainstream community. These skills then helped me in my career as a librarian and later an advocate.

On Friday nights I walked up the street and around the corner to deaf club night in the community hall. Deaf club was for everyone, from babies to seniors and I met many wonderful people and enduring friends there.

Deaf pub was held once a month in the bar on the lower ground floor. Deaf pub, managed by a volunteer committee of deaf people, was crowded and raucous and regularly resulted in neighbours making Monday morning complaints to the Deaf Society.

Deaf pub night was also Auslan club night in the community hall. When Auslan club finished many of the hearing people came downstairs to the deaf pub to practice their emerging Auslan.

Privately how we groaned! Daily we endured the trials of communicating with Auslan-illiterate hearing people. Deaf pub was our time to have fun and enjoy relaxed communication. Why couldn’t we just have something that was ours and easy for a change!

But we understood it was to our benefit to encourage and help them learn Auslan, so we smiled and modified our signing to suit their abilities and returned to our conversations when they moved on to practice on someone else.

It was wise to arrive early on pub nights.  The room was small, quickly filling to capacity and as the night progressed a queue would form outside. One memorable night a friend got stuck out there for quite some time, outraged that she and other deaf people could not get into their own club because it was full of hearing people.

Much community business occurred on deaf club and pub nights.

At the time I was secretary of Australian Association of the Deaf (now known as Deaf Australia). The president was Colin Allen, now President of the World Federation of the Deaf. These nights were an opportunity to talk informally with deaf people about the issues of the day, helped us to keep on the pulse of deaf community views and keep deaf people informed about our activities.

And then everything changed.

Did deaf club mean as much to you as it did to me? Tell us what it meant to you.

Killing saucepans

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This morning I almost killed a saucepan. It’s the sort of thing that happens sometimes in a deaf person’s life.

While I waited for my breakfast egg to boil, I ate some blueberries and yoghurt, sipped a cup of tea and browsed through a new book about women’s sheds, a gift from a friend. Engrossed in this marvellous book, I suddenly smelled something burning. And I remembered my egg.

Fortunately it hadn’t quite boiled dry, the egg was still delicious and the saucepan survived.

Lots of things like this have happened in my life, some with a worse outcome.

As uni student in the 1970s, my soft contact lenses had to be sterilised daily by boiling within a special container in a pot of water. One morning I put them on to boil and sat down to study. The lenses and their container had boiled dry and melted before I smelled them and remembered.

And I once flooded my sister’s kitchen.  About to wash up, I was distracted by friends walking by inviting me to join them on a twilight walk and off I went, forgetting that the tap was running and the plug was in the sink.  My sister, who was out at the time, returned soon afterwards, to find water pouring out her back door.  She was not amused!

When you’re deaf you don’t hear things boiling on the stove, taps running and all sorts of other things.  So over the years I have learned to be more mindful of what I am doing but still occasionally I slip up. Like this morning.

The fact that I don’t hear can sometimes have quite scary impacts. One morning, as a student living in a shared house in Townsville, I put my washing on in the laundry under the house and went upstairs to get ready for the day. Just as I began brushing my teeth a terrible banging began vibrating through the house. Shocked, I dropped the toothbrush into the sink and rushed downstairs.

There the washing machine gently thunk-thunked, oblivious to the drama.

Not the washing machine then.

I raced back upstairs. Frantically I went through the kitchen and living room, running my hands over every appliance, everything mechanical in the house, trying to locate where this terrible banging was coming from. Home alone, I considered running to fetch a neighbour to come and tell me what it was.

Be calm, I told myself. Think. Look. I stood in the living room where I could see into most rooms in the house and slowly looked around me, focussing. My eyes came to rest on the bathroom sink tap. It was still running. It was the only thing moving. I walked back into the bathroom and put my hand on the tap. I turned it off and the banging stopped. I turned it back on and the banging started up again.

Enlightenment arrived.  The water pipes!

Nowadays I recognise vibration in the water pipes as soon as I turn on an offending tap and this is one of those stories that is funny afterwards. I dined out on it for years. But at the time, as a young and inexperienced person home alone, it was quite terrifying.

For those who believe every deaf person should have a hearing aid or cochlear implant, these are probably wonderful stories to endorse that belief.

But I don’t see it that way.

While some people who use hearing aids or cochlear implants can hear and understand a lot, for many, sounds are not easily recognisable.

I once worked with a woman whose hearing aid was annoyingly unhelpful for recognising sounds.  If I coughed or dropped something on my desk her head would pop up with a ‘What? What was that?’ alarmed expression on her face.  It perplexed me why she bothered with this useless hearing aid.

To me these experiences indicate that we all need to learn life skills that suit our circumstances.  And we do learn them.

Sometimes if I’m feeling lazy I’ll ask a hearing family member if the washing machine has stopped spinning yet, but I get quite annoyed if I haven’t asked and someone tells me it has stopped or that the kettle has boiled.  It’s as if they think I can’t cope.

As deaf people, we experience our environment differently to hearing people.  It’s not always easy to articulate these differences or for hearing people to imagine them and help deaf children learn life skills that are different to their own.  Often, quite simple differences.

Out in the car one day, I reminded my husband to turn off the lights as we emerged from one of Brisbane’s road tunnels.  He told me something I didn’t know: when he turns the engine off the car beeps if the lights are on.  So while my hearing husband relies on the car to remind him, I rely on a little routine I have established: enter tunnel, lights on; exit tunnel, lights off.  It works for me.  His way works for him.

Many of these life skills we develop with experience over time. Many we can learn from each other by sharing stories from our own lives. The different ways we do things and the stories we tell about them become part of our deaf culture.

Sharing these stories with each other validates and normalises our experiences. This is one of the things that is most valuable for deaf children when they grow up with other deaf people of various ages in their lives.

Some things we just learn best by being with people like us. Much of what will help us on our life’s journey is communicated just by doing things together and by sharing stories. Stories about things like almost killing saucepans.

Do you have any ‘killing saucepans’ type of stories that you would like to share here?

Wrong way! Go back!

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Wrong Way Go Back Sign

I’m worried. I am very worried. You should be too.

Many national organisations representing people with disabilities are about to lose their funding, including Deaf Australia, which represents me.

If this happens, Deaf Australia could be forced to return to what it was in the 1980s, a small volunteer-run organisation with no funds. But in the 1980s volunteering was a strong part of our culture.  The world is different now. People volunteer a lot less.

What will life be like for us if this happens?

Not good. Not good at all.

The price of liberty, they say, is eternal vigilance. The progress our representative organisations have made for us over the years has been about our human rights, our liberty.

For deaf people, the National Relay Service, new and improved interpreting services, captioning, Auslan/English bilingual education and early intervention; all these things give us access and the freedom to make our own choices. For people with other disabilities, it means things like accessible premises and transport.

When funding for organisations that advocate for us is gone, who will be there to be vigilant for us?

The gains we have made will be eroded. The onslaught has already begun: just a couple of weeks ago the government introduced a bill into Parliament seeking to wind back compulsory reporting and other protections of TV captioning.

With interventions from Deaf Australia and other organisations , and Get Up petitions signed by many of us, this bill has now been referred to a Senate committee.  We still have a chance of retaining these protections, so long as organisations like Deaf Australia are able to do this work of fighting to protect our rights.

Without Deaf Australia and similar organisations for other disability groups what will happen in these situations?

We will all be on our own, fighting for our rights ourselves and struggling to be heard.

Years ago on my way to work each morning at the State Library of NSW, I used to walk past NSW Parliament House and often there would be a lone person outside the fence with a placard, sometimes a small group of people. And always I’d think to myself: “You’re wasting your time. You haven’t got a hope in hell of having your issue heard.”

This will likely be us soon.

The threat to our ability to be heard, and ultimately our liberty, is happening because the Australian Government is introducing a new funding model.  Currently peak representative organisations are funded under a program called National Secretariat Funding. The new program is called Sector Development for Disability Representative Organisations (SDDRO).

It was released in July this year. When I looked at the information I was horrified.  In a nutshell, instead of funding 13 national disability representative organisations as they do now, government wants to fund seven. Instead of the recurrent funding they were receiving, everyone had to apply for funding in a competitive tender.  The outcome is expected to be known in December.

The seven disability ‘population’ groups that will be funded under this new SDDRO model are: women, Aboriginals, people from a Cultural and Linguistically Diverse (CALD) background, children, service providers and two cross-disability consortiums.

So five organisations currently funded will likely continue to be funded. Eight will be out in the cold. These eight plus any others not currently funded but needing funds, will have to squeeze into the two cross disability consortiums.

Only three of the five are actually Disabled Person’s Organisations (DPOs – organisations controlled by people with disabilities themselves); one is controlled by parents and one represents service providers. Why will service providers be funded to advocate for themselves when so many DPOs won’t be? Why are the interests of service providers more important than the interests of the people who use their services? Go figure!

Each of the seven organisations/consortiums will get $300,000 per year. (Most get about $165,000 now; National Disability Services, representing service providers, gets about $350,000 now.)

So if there are, say, 15 organisations in a cross-disability consortium, then each will perhaps get $20,000. If the consortium’s application is successful; it might not be, in which case they will get nothing.

According to government, this new model is their way of ‘encouraging’ the disability sector to ‘organise itself’.  Fiddlesticks I say!

Why has government decided to do this?

It has been said that the National Disability Insurance Scheme (NDIS) will give people with disabilities the support they need, so most won’t need advocacy anymore.

More fiddlesticks!  Many things are not included in the NDIS: education, employment, health services, transport and so on. We still need advocacy for these things.  We still need advocacy to ensure the NDIS does what it should!

And anyway, bureaucrats in the Department of Social Services have been working on a new funding model for years, since long before the NDIS was a blip in Bruce Bonyhady’s imagination.  I know this because I was one of the people ‘consulted’ about it over many years.

Government is constantly bombarded by requests to fund representative organisations. Many disability groups receive none, e.g., people with Down Syndrome and people with autism. Government has constantly cried “no money!”  Yet a few years ago Children with Disability Australia, run by parents, received funding for the first time.

Why has government decided to fund what they call ‘population groups’ – i.e. women, children, Aboriginals, and people from a CALD background – and force what they call ‘diagnostic groups’ into cross-disability consortiums that have to thinly share funding?

One, they say the model is based on the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).  The UNCRPD talks about all people with disabilities collectively and it specifically refers to women, children, Indigenous and ethnic people.

Two, they say that the new funding model discards the ‘medical’ model and uses the ‘social’ model for which we have all been advocating.

Both of these rationales are disgraceful misinterpretations, pathetic excuses to narrow down funding decisions.

The UNCRPD also refers to many other ‘population’ groups such as race, colour, religion, and to specific ‘diagnostic’ disability groups such as deaf people and blind people and their specific needs such as sign language and Braille.  Government has simply cherry picked a few ‘flavours of the month’.

And clearly they do not understand what a ‘social’ model for disability means.

A ‘medical’ model treats people as having medical problem that need to be fixed. A ‘social’ model treats us as a whole person and fixes the social environment so it includes us.

But Government has misinterpreted this to mean that it’s not about medical diagnoses anymore; therefore, ‘diagnostic groups’ (deaf, blind, autistic, intellectual etc) no longer need attention or significant funding.  Only ‘social’ groups like women, children, Aboriginal and CALD people do!

They have not understood or have ignored, for example, that while some deaf women do have issues that are women’s issues such as domestic violence, most of their issues are communication issues directly related to deafness.  A women’s organisation isn’t going to be focussed on communication: it’s a deaf issue, not a women’s issue.

And who’s going to be looking after the deaf men’s communication issues?

They have not understood that in cross disability consortiums someone still has to provide expert advice on the rights of specific disability groups. If representative organisations don’t have sufficient funding to do this then the voice of these groups will not be heard.

If all this didn’t have such disastrous consequences for so many millions of us, its stupendous stupidity would be hilarious.

After all the work so many of us did on explaining all this to government in so many ‘consultations’ it is so disheartening that they have made these decisions that disenfranchise so many.

They are going the wrong way! They need to go back and rethink the whole thing!

The other day, someone remarked that it’s probably too late to do anything about this new model. That was what motivated me to write this post.

It’s not too late. Final decisions are expected in December. Government can change course at any time.

Government can decide to throw out this disastrous new model. They can renew the funding that peak disability organisations currently get for another year or three and they can go back to the drawing board. They can, for once, actually listen to people with disabilities. They can do the right thing.

It’s time for all of us to stand up and tell them this is what they must do.

People have asked me, “Why aren’t representative organisations saying much about this? Why aren’t they making more noise?”

These organisations are between a rock and a hard place. It’s hard for them to know the best way to deal with this. If they say too much and seriously anger government they could ruin their chance for funding of any kind. If they say too little, they could miss a fairer deal.

And anyway, government – Ministers and bureaucrats – won’t talk to them about it while funding decisions are in process.

So it’s up to us, the community, to do something. The organisations that represent us and our disabled family members and friends now need us to stand up for them.

If we don’t, they may no longer be there for us, they may not be able to protect our rights anymore.

Everyone can help, whether you are disabled or not.

Send an email to Kevin Andrews, Minister for Social Services kevin.andrews.mp@aph.gov.au  and to Mitch Fifield, Assistant Minister for Social Services senator.fifield@aph.gov.au

Tell them:

The new Sector Development for Disability Representative Organisations funding model will be disastrous for millions of disabled people and is the wrong thing to do. The government needs to throw it out and develop a new model that looks after everyone fairly, not just a few selected ‘population’ groups and service providers.  Until government has done this, the current National Secretariat Funding model needs to be retained.

Remember to include your name in the email, and something in the subject field, e.g.: Funding for disability representative organisations.

And send a copy of your emails to your local Member of Parliament. Don’t know who your local member is or their email address? Find out here: http://www.australia.gov.au/faq/which-federal-electorate-do-i-live-in

To find your local MP’s email address go to: http://www.aph.gov.au/~/media/03%20Senators%20and%20Members/32%20Members/Lists/MemList.pdf

Please do it NOW! Before it’s too late!

There’ll be music and dancing

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IMGP3303Last week I went to the ballet and was reminded of a question I was asked a couple of years ago: how to make ballet accessible for deaf people.

I have been a ballet subscriber for decades. It has never bothered me that I don’t hear the music. I see the dance.

When I lived in Sydney in the 1980s and early 1990s I subscribed to the Australian Ballet. Here in Brisbane I enjoyed the Queensland Ballet for years under the brilliant French artistic director Francois Klaus. When he retired two years ago, Li Cunxin became artistic director and Queensland Ballet was reinvigorated; its standard and popularity grew.

Li Cunxin is famous for his autobiography, Mao’s Last Dancer. What is perhaps less well known is that he and his Australian wife Mary Li have a daughter who is deaf: Sophie.  I met Sophie, a delightful young woman, last year at a 4Senses music gig organised for Deaf Australia by a team of hearing volunteers who wanted to make live music accessible for deaf people.

4Senses was held three times over two years and was always a wonderful event. The music was loud and made more accessible by balloons to hold against one’s body, subwoofers to sit on and feel the vibrations, and artistic visual interpretations and captions on big screens; and the lyrics were interpreted into Auslan. But 4Senses never made much money and the number of deaf people attending was always disappointing.

Although there are deaf people who love music, it isn’t a big part of life for most. It just isn’t something we relate to. It isn’t part of our culture. It isn’t part of our environment.

This was brought home to me many years ago when I lived alone. During a dinner party a hearing friend remarked on how quiet it was without music playing in the background.  It hadn’t occurred to me to play music. I didn’t even own any music or anything on which to play it.

So it was hard work convincing deaf people that an event like 4Senses was worth attending.

Many hearing people struggle to understand this. For them, music is so beautiful, why wouldn’t deaf people want to be able to hear it or at least access it any way we can?

I’m one of those deaf people who like music. I learned Scottish Highland dancing as a child and was learning to play the piano when I became deaf at the age of nine, so I had a basic grounding in music’s loveliness.

Living in Sydney in my twenties and thirties, a group of us, mostly deaf people, often had parties at 204, a friend’s house in Summer Hill, affectionately known by its number. 204 parties always had loud music.

One friend in particular, an actor at the time with the Australian Theatre of the Deaf, was a brilliant sign singer. Although I’m not a fan of sign singing because it is seldom done well, I adored his sign rendition of Money changes everything and at almost every party I’d pester him to perform it.

In my late thirties and early forties I had piano lessons again and learned to play a little. I loved it but it’s hard to learn this sort of thing when you’re older.

My piano teacher, Bernice, who is 83 now, subscribes with me and another hearing friend to the Queensland Ballet. (And next year we’ll be joined by a deaf friend. Yes!)

In the interval at the ballet last week we were discussing Gough Whitlam’s memorial service, held the day before, and how much we all love the song Jerusalem. I love the lyrics but am not familiar with the music. I asked Bernice if she could teach me to play it or if the music would be too complicated for my piano abilities.  She said she would rewrite it for me in a simpler version. How lucky I am to have such a beautiful friend!

But my interest in music isn’t overly profound. I don’t hanker for it or lament my inability to hear it. I don’t even much notice its absence. I am used to not hearing music. I am used to being able to feel only its vibrations and rhythms and, through the piano, to some extent its melodies.  I take what I can from it and enjoy that and that is enough for me.

At the ballet it is enough for me that I see the dance; I don’t think about missing out on the music, I just enjoy the dancing.

When we were organising the first 4Senses gig, my hearing husband, who loves music, commented that deaf people don’t know the lyrics or understand the culture that surrounds music. I’d never thought of that before and I was quite stuck by his comment.

It seems to me that more than the music itself, what’s important for deaf people is understanding the cultural aspects of music, especially its lyrics.

What I like about Jerusalem is its rousing battle cry, the soaring call to action in its lyrics. I want to learn to play the music because I want to feel how (I imagine) it soars for those marvellous words: Bring me my bow of burning gold! Bring me my arrows of desire!

And it interests me that the lyrics are a poem written by William Blake, that in this song, Jerusalem is a metaphor for heaven, a place of universal love and peace. It was such a marvellous final song for Gough!  These are the things that we deaf people need to learn about, not so much to hear the music.

So last week as I sat watching the ballet I remembered that question asked of me at the beginning of Li Cunxin’s directorship, when the Queensland Ballet’s CEO contacted me at Deaf Australia, where I was then Executive Officer. We arranged to meet to discuss ideas, but for various reasons, several meetings had to be cancelled and we never did meet.

To be honest, even though I adore ballet, in the context of the large number of issues Deaf Australia is called upon to advocate, it wasn’t a high priority.

Last week’s ballet event was a number of short pieces by new and emerging choreographers, held in the studio. It was an up close and personal evening. We sat closer to the dancers than is possible in a theatre.

We watched as Li coached two dancers through a rehearsal session. We listened as Li and a choreographer explained aspects of their dance creations and the audience asked questions.

Well, other people watched, listened and asked questions. I watched. And I rather wished I had met with the CEO two years ago. It would have been wonderful to have an Auslan interpreter there in the studio.

I guess it’s time for me to talk with Queensland Ballet in my own interests as a subscriber.

Do you have other ideas for how we can make ballet and the culture that surrounds music more accessible for deaf people?