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I have just had the enormous privilege of attending the DisabilityCare Conference. The Conference was a fine mix of information, celebration and drum beating about all things disability. I was privileged to be able to mingle with Australia’s elite disability activist. Among them were the Bolshy Divas – they are a group of elite disability activist, all females. I was very proud recently to have been anointed a Diva. They call me the Diva WAD. Because I do not want to offend anyone’s sensibilities I shall leave the WAD part for the reader to work out.

The Conference provided fabulous information about the NDIS. Of course we all know the name for the NDIS is now DisabilityCare. It is a name that many of us loath, including me, so I will continue to use the term NDIS. The information pertained to the structure of the scheme, what it will provide and some of the challenges of the roll-out. It also had some useful information from overseas about how self directed disability funding is utilised.

Of course with the NDIS there are some sceptics. I think scepticism is healthy just so long as this scepticism is used constructively to raise relevant issues. For example a few Deafblind activists let it be known that they felt that the Deafblind community had not been given proper consideration under the scheme. Others are worried about support their organisations will get to move over to the market based approach for services that the NDIS will require, particularly in terms of cash flow to their organisation. Others are still sceptical about how much choice they will really get. I think these questions and concerns are valid and need to be discussed.

Many speakers urged the community to give the NDIS a fair go. The NDIS is being rolled out in a unique way. It has a number of launch sites throughout the country. A lot of preparation has gone into the launch which incidentally happens on Monday July 1^st. As people begin to use the scheme they will identify a number of issues that need to be addressed. It will take time but it seems that there is flexibility to adjust and change.  Hopefully this will mean that when the scheme is fully rolled out in 2019 the model should function like clockwork. That is the theory anyway.

As one speaker pointed out we have to be prepared for the shock jocks. Some will be creating scandals about how much money the scheme is chewing up while others will be creating scandals about how the scheme is failing people. I guess you have to ride the waves. We all need to be as flexible as we can but at the same time as diligent as we can. In the long run this will help the scheme become as strong as possible.

This brings me to a conversation I had during the conference with the EO of Deaf Australia, Karen Lloyd. Readers will know that I have a rather frosty relationship with Deaf Australia. Karen and I sat together at the conference dinner. It is fair to say that “we had it out”.

We discussed a number of issues including the NDIS, CaptiView and my apparently lax interpretation of information. Of course we did not agree on much but we at least had the civility to hear each other out. But one thing that we did agree on was that in relation to the NDIS I got one thing wrong. I think it is imperative that I own up to this now. ( footnote:  I am reliably informed by an interpreter who came over to offer interpreting that Karen and I were so animated in our “discussions” that she gave our table a wide berth 😀  – Apologies to all that were on our table.)

Recently I wrote an article. This article was about the NDIS. It was titled simply, NDIS – Now for the Hard Work. Now in this article I questioned the number of people the Government indicated that the NDIS will support. At the time the official Government line was that the NDIS would support 410 000 people. Since that time it has been bumped up to 460 000 people.

I suspect it will continue to be bumped up in the coming months and years. I made a claim in the article that, based on this figure, I thought that people who are Deaf and hard of hearing were not being considered. Looking back it reads as if this is a fact, in truth it is just my opinion. That said my opinion was based on the analysis of the data. I encourage people to read the article again to review my arguments.

Now it is here that I have to say that I GOT IT WRONG. Karen was at pains to point this out and she is correct. Karen directed me to some recent NDIS document releases. In one of these releases they have outlined prices for the various services, equipment and support that the NDIS will cover.[1] Within this DOCUMENT, on pages 11 and pages 14, you will see that it clearly outlines prices for hearing aids and Auslan interpreters.

Now the nae sayers have pointed out that the prices are based on the Office of Hearing recommendations which are thought to restrict choice. Others have pointed out that captioning is not mentioned. Some have pointed out that equipment like computer technology that enhances communication is also not clearly defined. Perhaps people with Cochlear Implants will argue that their implant processors are also not mentioned. All of these are valid questions and need to be asked.

This is where I GOT IT WRONG. Clearly people who are Deaf and hard of hearing have been considered. I am really happy that I got it wrong too. It’s great to see the evidence that people who are Deaf and hard of hearing are indeed being considered as part of the NDIS.

What is important now is that people who are Deaf and hard of hearing begin to use the scheme and see how it can support them. Around Australia there are a number of launch sites for the NDIS. Speaking with Karen we agreed that it was important that people who are Deaf and hard of hearing living within the launch sites seek support from the scheme as early as possible.

In this way the Deaf and hard of hearing community can begin to test the scheme. As the scheme is tested examples of how the scheme can be used to benefit people who are Deaf and hard of hearing can be developed. This might be simply purchasing hearing aids. It might be making claims for Auslan interpreting. It might be having a cochlear implant processor replaced.

In the DOCUMENT it states that Auslan interpreting can be used for communication support in essential personal, social or community activities. One might like to try testing how far this can go. Can it be used to get an interpreter for a funeral, a wedding or perhaps a 21^st birthday party? Likewise one needs to test the system to see if it will replace hearing aids or if it will provide captioning. There are a whole range of different scenarios that need to be tested.

It is possible that none of these scenarios will be considered. But we will not know until we try. We must remember to be patient. Some of these claims might be rejected and some might be accepted. Now is the time for people who are deaf and hard of hearing living in the areas that the NDIS is launching to get out and see exactly what the NDIS can provide for them.

It will also not be as simple as calling up and saying I need an interpreter for a wedding. An assessment will occur and the assessment will cover a whole range of different scenarios. Based on the assessment funding will be allocated to be controlled by the person with a disability. How this will work with people who are Deaf and hard of hearing is not clear. We will not know until people who are deaf and hard of hearing begin to use the scheme.

Current agreed launch sites are the Hunter area of NSW, Barwon area of Victoria, all of South Australia for children and all of Tasmania for young people.[2] It will be particularly interesting to see what support can be provided to parents of Deaf and hard of hearing children in Tasmania and South Australia. Auslan language support for children in remote areas, perhaps? Intensive speech therapy, perhaps? Mentoring for young Deaf or hard of hearing kids, perhaps? We will not know until we try.

I urge people to be patient and support the NDIS as much as they can as it is launched and as it evolves. The NDIS, while it will improve things immensely, is not an unlimited source of funding. It is not designed to fix everything either. Some people have mentioned that the NDIS will fix things like announcements for people with a vision impairment at train stations, it will not.The scheme is for individuals with a disability and their families/carers. The powers that be will have to make decisions based on priorities and the NDIS rules. It will not all be plain sailing.

I encourage people who are Deaf and hard of hearing who are living in any one of the launch sites for the NDIS to contact either Deaf Australia or Deafness Forum Australia for advice. Perhaps the gathering of information and case studies about how the NDIS is benefitting people who are Deaf and hard of hearing is something the two organisations can collaborate on.

Congratulations to all those that worked so hard to get the NDIS up and running. It is a massive achievement. Generations of people with a disability will thank you.

The saga of 262 continues to rumble over in South Australia. The Deaf community there continue to fight tooth and nail for what is the last asset that their community has. There is a Save 262 Facebook page that reminds everyone that 262 was built largely through the efforts of Deaf people who worked hard to raise the funds to build 262. Morally the building belongs to them. Legally it belongs to Townsend House who control the title and deed. Please don’t tell me it belongs to Deaf Can Do. The reality is that Deaf Can do is nothing but a trade name under the Can Do group of services and companies administered by Townsend House. The final decision of 262 and Deaf Can Do lies with the gang of 8 who are the Townsend House Board.

To the credit of Townsend House they are communicating openly with the Deaf community. They are transparently putting forward their reasons for needing to sell 262. While we may not agree with their reasons or their methods, credit where it is due, they are engaging with the community. This includes using an Auslan interpreter for a video communication.

However, their reasons still do not stand up to scrutiny. Their most recent communication was by video on June 5^th. This article will challenge some of the arguments that Townsend House have put forward.

Argument One – Since 1985 it has been a struggle to find the money to keep 262 Open.

This is true but it is not the building alone that is at the centre of this issue. Part of the problem is also how Disability services in South Australia were restructured in the early 90s. Originally the Old Deaf Society received Government funding to run case work and case management services. This changed in the early to mid 90s when the South Australian Government set up the “ONE STOP SHOP” Options Coordination services. This meant that the old Deaf Society lost a lot of its funding. Arguably the services they currently provide have been unviable for a number of years and it is these services that are swallowing money rather than the building itself. Rather than see 262 as the reason and the answer perhaps tough decisions need to be made about the viability of the current service model of Deaf Can Do. Is it time to close it?

Argument 2 – Although we did not really want to, the Board decided that it had to sell the building so that the Deaf Society could continue to provide interpreting and Community Services.

Now Townsend House have said that if Deaf Can Do closes the Deaf community will lose vital services like free interpreting for certain community services and the like. This does not need to be the case. Interpreting services could easily be incorporated into Townsend House. Indeed interpreting services make money. It is true there have been a number of independent interpreting providers that have come on to the market. This has provided the current Deaf Can Do interpreting services with competition. Understandably this would have also impacted on revenue. They no longer have a stranglehold on the market. This said, arguably, interpreting services still do not operate at a loss.

The Deaf community themselves need to ask themselves whether they would want free community interpreting over the loss of their building. Today Governments and educational institutions are increasingly accepting the cost of interpreting. NABS provides free interpreting for GPs and private appointments. Public health providers that refuse to provide interpreting run the risk of being slugged with a DDA complaint. The playing field has now changed. Perhaps it is time to look at FREE community interpreting in a different light given recent developments in the funding of interpreting.

As far as services go perhaps the Deaf Can Do business model is actually duplicating what is already out there. How much of the current services are viable, needed or already being provided by the case management services that are based at the Guide Dogs and funded by Disability Services South Australia? Perhaps the hard thing to do is to really look at scrapping some services that might now be outdated and ineffective.

There was mention that the audiology service, Can Do Hearing, has not made the profit expected. Perhaps the hard question to ask is; is this service actually needed? Is the return that is being received worth the investment? Is the audiology and hearing services market already over saturated? I do not know the financial return from the audiology business but if it is not making the returns expected, perhaps it simply is not viable.

Perhaps these are the decisions that need to be made rather than blaming losses on 262. It’s puzzling why Townsend House have continued to invest money in a business model that increasingly is looking unviable.

Argument 3 –  In May last year DCD Board offered to gift the building to DSRSA if the accountants could work out that DSRSA could afford to pay the cost to run the building. –  It worked out that DSRSA could not afford to pay to run the building …

This was always a no brainer. Deaf Sport Recreation South Australia (DSRSA)  is a small community group that gets virtually no Government money and has minimal if any viable assets. It was never ever going to be able to afford the upkeep of the building alone. 262 could have been gifted so that DSRSA could decide what to do with it independently. They may have decided to sell anyway and use the profits to establish the Deaf community centre so that they were independent of groups like Townsend House. The conditions that Townsend House placed on the GIFT, which included that DSRSA could not set up services in competition with Townsend House, always meant that the GIFT was never a serious option.

Townsend House really needs to stop insulting our intelligence by constantly reminding the Deaf community of the GIFT. It was never a serious or viable option!

Argument 4 – So the working group looked at a number of other options. One option was to sell the land at the back of the building and spend a lot of that money on the building so that the community could use it. When the architects and building engineers worked out how much was needed to be spent on the building, it was clear that option would not work because there was not enough money to do that. The other two options mean that the whole property at 262 would be sold.

Of course we know that a 4^th Option has been offered where a Community Housing group has agreed to take over the maintenance of the building, the building can remain with Townsend House. The Deaf Centre out the back can be redeveloped for the Deaf community. This will allow the building to be used by the Deaf community and it will also mean the building remains as an asset that will continue to appreciate. It appears this option will cost Townsend House nothing. The deal means that the Housing Group will develop other parts of the property into apartments at profit. In five years it is estimated around $1 million will be generated. This $1 million would go to Townsend House.

The 4^th option was rejected. It seems it was rejected because it would not immediately generate the cash that Townsend House invested in to Deaf Can Do services. Townsend House wants to recoup this money as soon as possible. It also wants to reinvest some of the profits of 262 back into the Deaf Can Do services.

It’s been a bad investment. They have thrown good money after bad. Arguably the business model of Deaf Can Do is not and will never again be viable. The logic of Townsend House is that they need to sell the last viable asset to save a business model that will never work.

I am sorry it just makes no sense at all. Are these people really business people? Again I have to emphasise – Perhaps it is time to accept that Deaf Can Do is a relic from a bygone era that cannot be saved. Selling 262 to save Deaf Can Do is insane. Or do Townsend House simply want to recoup their wasted investment in Deaf Can Do?

Argument 5 – Management are looking for a place that is not too far out of the city, where there is good public transport and parking and a place large enough for Deaf groups, the Church and sports groups to gather. Deaf Groups have been asked to help look for a place too. The Board is willing to buy a building when 262 is sold and will make sure that Deaf people are able to manage and control the new place themselves if that’s what the Community wants.

Ok, here we at least have a glimmer of light. If Townsend House carries on along the path to sell 262 they will invest money into a new property that will be solely managed and controlled by the Deaf community.  Ok if this is to happen let us have specifics.

Ideally Townsend House can outline the percentage of proceeds that they will channel back to the Deaf community. They can outline who will have ownership of the property and potential gains in the appreciation in the value of the new property. Ideally if the 262 building is sold and a new facility is established the new facility will be OWNED, CONTROLLED and MANAGED by the Deaf community.

As it stands this proposal COULD work but detail and specifics are vague. The ideal outcome is that it allows the Deaf community to be fully independent with no restrictions. Ideally it will mean that never again will the Deaf community be at the mercy of an organisation like Townsend House. Ideally it will mean that they can grow and expand EVEN if that means in competition with Townsend House. Ideally it means not just a property but CASH that the Deaf community can invest and grow independently.

If 262 must go, and this is looking increasingly likely, lets ensure that the proceeds can be used to ensure the future and empowerment of the Deaf community in South Australia.

That future might mean 262 is sold and the end of Deaf Can Do. Be it so let’s at least ensure the Deaf community have a destiny that is their own to map out and control.

It is no use to grumble and complain;

It’s just as cheap and easy to rejoice;

When God sorts out the weather and sends rain–

Why, rain’s my choice.

James Whitcomb Riley

That’s a lovely poem innit. Thanks Jim. I was looking for inspiration of some sort. You certainly didn’t give it to me. You see Jim you’re not deaf, or at least I don’t think you were. Your not disabled either, not as far as I can see. I even Googled you to make sure. And blow me down, it’s possible that you were. You struggled at school apparently. You were always in trouble. Frequently absent. Maybe you had ADHD before it was known or some other kind of learning disability. But I tell you what! Apparently, despite telling us not to whinge and complain, you complained a lot about your teachers. Wikki says you had nothing kind to say about your teachers. That’s what happens when you perceive you are not treated fairly. You tend to complain and whinge. No one, absolutely no one, should just put up and shut up and accept their lot if they are treated unfairly.[1]

“Just as cheap and easy to rejoice” says Jim. Sure count your chickens. You should; it could be worse couldn’t it? It could also be better and no one should be critisised for striving for something better. But Jim’s poem is how society perceives whinging. They don’t like it. They love to see the positives of everything. Good news stories and romance are the order of the day. Cool, but if you are downtrodden and beaten all the time, well I tell ya this, you gotta whinge. Otherwise just accept your lot and suffer. You can do that but I certainly won’t!

So this is what I am gonna do. I’m gonna whinge. Here in Australia it is legislated that I have to whinge. You see if I am treated unfairly society don’t protect me. Nope! It protects me only if I have a whinge. Australia’s Disability Discrimination Act (DDA) is built upon the concept of having a whinge. If you are discriminated against you have to whinge to the Australian Human Rights Commission, who supposedly will then bring down the full force of the law upon whoever it is that discriminated against you. Right?  Ok join me in having a giggle at that one.

Ok I accept the DDA actually says you should complain but as far as I can see the definition of whinging is to complain. Ok complaining suggests something a little more formal. Whinging has a deeper meaning. Wikitionary says whinging is,  “To complain, especially in an annoying or persistent manner”  To get fairness for people with a disability through this  sorry excuse of a law that is the DDA, that is exactly what I/we have to do – Complain, badger and annoy the powers that be persistently and consistently so that positive change happens. Whinging is the only way to make the DDA work!

Yes, today I am cranky. I am cranky because people won’t return emails. I do my work by emails, its kinda like my phone. If it is not by email it’s by text chat. It’s how a deaf professional works. We can go through the NRS if we like, but that third person is a hassle, even though I accept it is a valuable service. I used the NRS today. It dropped out. I finally got through and I got an answering machine –  “We are open from 9 to 5. Please call back then.” is what the message said. Ok sure, but it was 10.15 am. Pick up the bloody phone! Well I am sorry but its annoying when five emails go unanswered, the NRS drops out and then you get an answering machine!

But this week I am mostly cranky cos of what is happening to the South Australian Deaf Community. Failed fundraising, crappy government funding, poor returns for business ventures and good old fashioned mismanagement has seen the famous old Deaf Society on the brink of collapse. Because of all this the South Australian Deaf Community are on the brink of losing its community and spiritual hub at where they have existed for nearly a century.  “Its no use to grumble and complain.”,  says Jim, “It’s just as cheap and easy to rejoice” Sure, sure … There has to be something worth rejoicing first!

Of course we have to whinge. But we don’t just whinge, we have to also offer alternatives. It just seems that when we offer alternatives the powers that be ignore those too. I am trying to be a wee bit humorous here but I can tell you there is nothing humorous about what is happening to the South Australian Deaf community. It is a human tragedy unravelling like a speeding freight train without brakes and just as unstoppable.

I try looking for positives. It’s hard to be positive when you read about some girl with cerebral palsy who also is deaf. The girl is refused a seat on a plane by Jetstar. WHAT THE HELL!  “It’s no use to grumble and complain” You try not to but what choice do you have. Jestar said it was cos the girl would not have been able to understand instructions. This is despite the fact the girl had apparently flown before without issue. It is hard to take Jetstar seriously. This is the same airline that was so inflexible that Kurt Fearnley had to crawl on his hands and non functional knees to get on a plane. It is the same airline that rigidly refuses more than two passengers in wheelchairs per flight! Disability Commissioner Graeme Innes was asked what he thought about Jetstars refusal to let the girl on the plane. He said something along the lines of.“It’s terrible, but I am not surprised.” This is our most senior disability representative! How inspiring is that – NOT!

Today I was just looking for a phone contact at the Deaf Children Australia website and I saw their latest fundraising campaign. It’s the Autumn Campaign. Now I am going to be controversial here … But I absolutely hated the campaign – The campaign implores us to, Help Keep Deaf Children Safe From Harm –

Now this is the headline that is on the home page. You click on the headline and it takes you to their fundraising campaigns page where it states, “Sadly, deaf children are more vulnerable to abuse than most children. You Can Help Us Protect Them.” Just below that it says make a donation. You click on that and it takes you to the donations page where the headline is … I am Deaf Not Defeated. I despaired.

Now let me first congratulate Deaf Children Australia on the program that they were promoting. The program is aiming to make the world a safer place for deaf children. It is true that children with a disability, deaf included are vulnerable. It is true that they can be at greater risk of abuse. Any program that can prevent this happening is a good thing. BUT that’s where my praise stops. I will try my best to explain.

There is an interesting website called Socyberty.[2] At this website there is a powerful article about societies attitudes towards people with a disability. Frederick Zammit has written this article. Zammit claims,  “A person with disability is presented to us as a personal tragedy or impaired body. In general terms, disability is constructed as an individual misfortune.” Now I will be the first to tell you that disability is not always a barrel of fun, it can be tragic. But the problem is that the way the media and fundraising campaigns paint people with a disability is as Zammit explains, “Tragic and impaired”.  Zammit’s view is that this leads to the continued oppression of people with a disability.

Zammit’s argues that these negative stereotypes that are constantly promoted contribute to an extreme power imbalance. These images of tragedy and despair are used by organisations that have a great deal of power and control over how people with a disability are promoted.. Says Zammit, “An attitude is a positive or negative emotional reaction to a person or object accompanied by specific beliefs that tend to cause its holder to behave in specific ways towards its object” The implication is that by constantly promoting the negative stereotype it contributes greatly to the general negative attitude of society towards people with a disability.

Now let’s return to Deaf Children Australia and their fundraising page. On this page you can, Become a Barrier Breaker.  If you become a Barrier Breaker you can become:

• automatically part of something bigger,
• part of a growing community of monthly givers helping to break down social barriers

This all sounds lovely doesn’t it? BUT the language that is used promotes the idea that the giver has POWER. It promotes a helpers mentality. The helpers are helping the helpless. Even if the GIVERS make something positive happen for the helpless the power is still with the givers. In this indirect way people with a disability are oppressed and indeed controlled.

Now let us go back to the South Australian Deaf Society and the 262 saga. One of the arguments that Townsend House uses to justify the sale of 262 is that they have to continue to support those Deaf in NEED. The concept of need suggests support to those less fortunate. This is the welfare mentality. The website DisabilityPlanet explains that the welfare mentality  as used by, “Charities through advertising and sponsorship campaigns reinforce stereotypes of disabled people that being, dependant, poor, needy, requiring non-disabled people to drag them out of their pit of despair through making minimal donations.”[3]

Now in the case of the 262 building the Deaf community want to retain it. They want to run it and they want to control it for themselves. It was, after all, set up for them. But Townsend House supports those in NEED. The very thought that the Deaf don’t NEED them is too much for them to stomach.  It’s not all about the money that 262 will raise if it is sold,  it is also about the CONTROL of the Deaf community and the continued oppression of them.

Neither Deaf Children Australia nor Townsend House will agree with these arguments.  They will claim they are providing positive programs with positive outcomes. This may well be but they continue to promote the negative stereotype. It is interesting that some of the most positive fundraising campaigns do not use negative stereotypes even though they deal with issues of death and tragedy. Red Nose Day,  Shave for a Cure and Australia’s Biggest Morning Tea are great examples of positive campaigns that are also fun. It seems that among our Deaf charities there is too little of this. The Deaf Children Australia campaigns, in my view anyway, are examples of how not to do it.

So that’s my whinge for today. For as long as the disabled are denied everyday rights such as getting on planes and controlling their own destiny we all must all continue to whinge. As I said earlier, Australian discrimination law dictates that we have to whinge to get change so whinge we must. As Martin Luther King said, “In the End, we will remember not the words of our enemies, but the silence of our friends.”  Sorry Jim – Just as rain was your choice – not accepting second best is mine.