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?

Technology has changed since your day

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Has an expert ever told you that hearing technology has changed since your day and can do so much more now?

It’s a chestnut* I’ve heard countless times and no doubt will again. It is a variation on the hearing-technology-is-the-answer theme that was told to my parents almost fifty years ago and is still used, subconsciously or otherwise, to sideline the dissenting voice.

In 1967 when I was eleven, two years after I became profoundly deaf, I wore a box hearing aid with a long twisted plastic cord from the silver box receiver stored in a pocket on my dress to a big pink button attached to an ear mould in my ear.

I wore this hearing aid constantly for a year because I was a boarder at the Queensland School for the Deaf and we were required to wear our hearing aids all day, every day.

When I went home at year’s end, never to return (I returned to my local state school and stayed in the mainstream), I took off my hearing aid and put it in a drawer.

One day my mother took it out and told me she thought I should wear it.

“No,” I said.

“But why? The teachers told me it will help you to lipread,” she said.

“It doesn’t help,” I insisted. “It makes it harder. It makes a lot of noise that makes no sense. It’s too hard to work out what I’m hearing and what I’m seeing and put them together. It is easier to lipread without it.”

My mother looked at me thoughtfully and put the hearing aid back in the drawer.

My mother has never been an expert on technology. Even today, in their eighties, my parents do not have a computer and turn off their mobile phone when they are at home; after all, they reason, they have a landline so why would anyone ring them on their mobile when they are home.

She is, however, fantastic with children. Children seem to feel safe with her and she understands them exceptionally well.

So in 1967 when the experts told her that my hearing aid was the very latest powerful hearing technology and I most definitely should wear it, she heard them out and seriously considered their advice but decided my expertise trumped theirs.

Years later I asked her why.

She said there were a number of reasons. I wasn’t a rebellious child; if it had been my brother, she might have tried to persuade him to wear it. She thought I was old enough to know what I was talking about. When I was very young I’d worn corrective glasses for a short while; I loathed them and constantly took them off, but when I wanted to see something I put them back on. She thought that if I was getting something useful from my hearing aid I would not have refused to wear it.

Lots of deaf people are like me and dislike hearing technology. Stories of deaf people who chucked their hearing aids out the car window or in the toilet the day they left school are legion and I know people who no longer use their cochlear implants.

Conversely, lots of deaf people love their hearing aids and CIs and feel disoriented without them, even if what they actually hear or understand with them is minimal.

I even know people who wear their hearing aid regularly but often don’t notice when the battery is flat; for them it is something that feels familiar, much like some people feel undressed without their watch or their earrings.

But for all of us one thing is true – today’s hearing technology is vastly different and much more powerful than it was when we were kids. One cannot argue with that.

But when experts tell me that if I’d had today’s technology when I was a child my life would likely have been very different, I don’t just think, ‘yeah, yeah, what if, what if’.

I hear a subtext that goes like this: technology has changed and can do so much more now, so your experience is not valid anymore and we don’t need to listen to anything you have to say.

It is a very powerful way to silence the dissenting deaf voice and experts frequently use it.

One thing that has not changed, though, is that there is still no hearing technology that turns a deaf person into a hearing person 24/7 in all environments. Regardless of how well a deaf person hears with a hearing aid or cochlear implant, they are still a deaf person who needs must face the challenges that every deaf person experiences.

They still must deal with hearing people’s annoyance when asked to repeat something they have said. They still must cope with embarrassment when they misunderstand something someone has said and everyone laughs. They still must battle to get a good education and a job. They still must develop ways to live with the inescapable feeling of being different when everyone around them is hearing and expects them to fit in. And much more.

The deaf experience is so much larger than just the technology that helps us hear a lot, a little or nothing worth having.

Experts who focus on the hearing technology and what it can do and are unwilling to listen and give value to the life experience and advice of deaf people regardless of their age or experience with technology exhibit a profound lack of understanding of what it means to be deaf. We should, like my mother almost fifty years ago, listen to and seriously consider their advice but make our own decisions based on so much more.

So, has an expert ever told you that hearing technology has changed since your day and can do so much more now? How did that make you feel?

(*A chestnut is a repeatedly told story that may or may not be true. See http://www.phrases.org.uk/meanings/old-chestnut.html )

Deaf is good in a noisy neighbourhood

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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?