The Rebuttal

Within the Deaf community there are a number of cultural institutions. It is through these cultural institutions that the community gets its strength. It gives the community a sense of identity, pride, worth and also lays down some of the rules for participation. In many cases cultural institutions contribute to the economic well being of the community.

For example the Australian Deaf Games are a cultural institution. They are not just games that Deaf people participate in, they are also part of the Deaf community’s identity. They create history, social links and even contribute to the economic health of the Deaf community. A well run Australian Deaf Games that makes a profit gives the Deaf community a certain amount of financial gain. The Australian Deaf Games are crucial to the long term survival of the Australian Deaf community, both socially and financially.

Cultural institutions are not just events. They can include things like social groups, arts, theatre, family structure, religious groups, political groups and the like. Examples of such institutions include Australian Theatre of the Deaf, The John Pierce Centre and Deaf Victoria. Across these various institutions much of the strength of the Deaf community lies.

A crucial cultural institution for the Deaf community has always been its Deaf Centres, or Deaf Clubs. These Deaf Clubs are a central place where many of the cultural institutions meet and co-exist. Old timers in the Deaf community know that groups like sports groups, Deaf Senior Citizens, the Women’s Guild, the political groups and individual community members all used the Deaf Clubs as place to coordinate activities. Deaf Club’s are the hub where the social and economic benefits of the Deaf community’s cultural institutions come to the fore.

In recent times, particularly since the mid-1990s, the value of Deaf Clubs as the hub of the community has been forgotten and in some cases lost. There are many reasons for this. One of them has been technology. In the past Deaf community members did not have the benefit of email, Skype, SMS, TTYs and the like to communicate.

As technology developed it provided Deaf community members with a means to be able to arrange things differently. Whereas in the past they would all meet at the Deaf Club and move on from there they could now arrange to meet directly at any number of places. A quick SMS to meet at a café or the movies has meant that the need to meet somewhere centrally like the Deaf Club was no longer needed.

The bigger threat has always been the economic one. Deaf Club’s usually existed within Deaf Society’s. Increasingly Deaf Society’s have faced financial challenges. These financial challenges have led to the sale of assets and the purchasing or leasing of more financially viable business centres. As Deaf Society’s made the decision to move to premises that were more financially viable it usually meant that Deaf Clubs closed or were neglected.

The rot started with NSW and the sale of the Stanmore Deaf Society. Stanmore had a wonderfully vibrant Deaf Centre. At one stage it actually had a lawn bowls green out the back. I worked there for a time and made good use of the squash court down stairs. In the 90’s financing the Stanmore site became too much of a strain. It was sold and the profits were used to set up the Deaf Society of NSW at the current Parramatta premises.

Unfortunately planning for the survival of the Deaf Club in NSW was inadequate. The Deaf community lost its central and most important cultural institution. This led to the NSW Deaf community becoming increasingly fragmented and disjointed. It has taken many years for the NSW Deaf community to recover and it still has a long way to go.

In Victoria the old Jolimont property was sold. With it went the Jolimont Deaf Club. There was some thought given to the needs of a Deaf community meeting centre. This is probably why the John Lovett meeting area was established. However, to get access to the meeting area the Deaf community were competing with many other groups. Accessing the centre after 6pm was a nightmare. The lift security prevents any access after 6pm. This means someone must arrive before 6pm. As people arrive they SMS each other and someone has to go down and let people in. It’s cumbersome and often unworkable.  The demise of the Jolimont Deaf Club is very much lamented.

In South Australia the Deaf community had an acrimonious battle with Deaf Can Do to prevent the sale of its Community hub at 262 South Terrace. They lost. Deaf Can Do have made provisions for the establishment of a Deaf Club at Modbury. It is not ideal. It is not very central nor is it that accessible to public transport but at least it is a Deaf Club. However, one wonders if Deaf Can Do missed a trick by not allocating a proportion of the profits of the sale of the grand old 262 building to the Deaf community. This would have allowed the Deaf community to become independent of Deaf Can Do and potentially financially secure.

Make no mistake Deaf Clubs are the heart of the Deaf community. Deaf clubs promote and sustain many of the community’s vital cultural institutions. This is why it is such great news that Vicdeaf and Deaf Children Australia have joined forces to employ four researchers. The researchers will gather information about successful Deaf centres and community centres all over the world. The research will be used to consult with the Deaf community to hopefully plan for the establishment of a strong and viable Deaf Club. To learn more about the research project watch the video.

We can dream. Let’s imagine a Deaf Club that is not just a meeting spot but it is also a hub of activity. Perhaps there will be café within that is managed entirely by Deaf people. Perhaps there will be regular community activities such as yoga and self-help groups that are run from the centre. Imagine if one of the several Deaf hairdressers in Victoria actually set up a hairdresser/beautician salon at the Deaf Club to pamper both Deaf and hearing people. Maybe there could be a business hub where consumers can locate any number of skilled Deaf professionals like builders, accountants, web designers, computer technicians and the like.

Let’s dream. The Deaf community needs a strong and vibrant Deaf Club. This is the lesson that we have all learnt from the 90s and early 2000s. The strength of the Deaf community lies from it having a strong Deaf Club. It is only right that profits made from the sale of assets from our Deaf Societies, including Deaf Children Australia, be directed back to the Deaf community. After all, these organisations were largely established on the backs and hard work of our Deaf pioneers.

Congratulations to Vicdeaf and Deaf Children Australia for establishing the research project into Deaf Centres. I, for one, cannot wait to read its findings.

It is a paradox that in my work the people that are hardest to work with are often those that have experience, and lots of it, working within the disability sector. I have lost count of the many times that I have registered to attend a conference or event about disability only to be told that no interpreters were available and have even been asked to cover the cost myself.

In my last job I was invited to a network meeting for one of Victoria’s largest Government funded disability programs only to be told that they thought it was up to me to book interpreters. Or there are disability employment agencies that ring the voice line of your phone knowing full well you can’t hear them and after telling them three million times to please SMS.

I’m sure other people with a disability can tell you stories of bookings made for disability functions upstairs with no lift or no accessible toilets. It is mind boggling sometimes and one wonders how some people have worked within the disability sector for so long. The real paradox is that it is often people with absolutely no experience in disability that are most responsive to the access needs of people with a disability. I was refreshingly reminded of this last week.

I was asked by a journalist from the ABC if I would be happy to be interviewed for a story on disability employment. The journalist, Norman Hermant, wanted to promote the concept of equity through the form of employment quotas. This is where employers must commit to employing a certain percentage of people with a disability. This is because the employment rate for people with a disability continues to lag and it is obvious that current measures to increase disability employment are not working.

I spoke with Mr Hermant before the interview. I asked him to strongly consider using a sign language interpreter for the television segment. At first Mr Hermant was confused. He thought that captions would be suffice. I explained to Mr Hermant that Auslan was a language in its own right. I explained that many in the Deaf community were more comfortable when information was presented in Auslan and indeed it often provided them with more clarity and meaning.

That was all that was needed. Mr Hermant asked how it could be done. I explained that you could film an interpreter on green screen and then impose the interpreter into the screen so that it actually looked as if the interpreter was there. I provided Mr Hermant with contact details of the business that could help him and he did the rest. Although Mr Hermant could not arrange the interpreter for the actual television screening he was able to get it organised within two days and available online. This was on top of his already busy schedule. His attitude was refreshing and I wish it was that easy within the disability sector. Click on the link to watch the story. ABC DISABILITY EMPLOYMENT STORY

It was a good week for me in terms of advocating for access for the Deaf community. In the same week I managed to get an Auslan translation for a student induction video at my work. My wife was filmed on green screen and placed on screen with an animated film that explained how to get started when you enrol in university. This all started from a presentation that I gave in July last year.

I presented to a forum of information technology experts. My presentation focused on accessible media. The gist of it was that any media placed online should be accessible for people with a disability. If there is audio there needs to be a text transcript for people with a hearing loss. Text should be in plain English so it is as accessible to as many people as possible. Videos should be captioned, have Auslan translations and also audio description for people who are vision impaired.

I provided several examples of how this could be done. After the presentation a creative media expert, who is contracted by my employer, approached me and asked if I would work with him to develop an accessible media sample that would have descriptive captioning, Auslan and audio description all in one. He wanted to learn the process and also to ensure material he produced was accessible.

He has been a joy to work with. He is alike a sponge and absorbs all advice and suggestions that are given. Again this a person with absolutely no background in disability but who just gets it. I just wish that more people who work within the disability sector that use excuses such as cost and time could have the same attitude.

It strikes me that a lot of success that I have is as an advocate is through my work. Through my work I am able to educate people and demonstrate how access can benefit not only people with a disability, but everyone. And there are many out there just like me. People who just through their everyday life show what is required to provide access to people with a disability and create awareness. This can be done through work or simply through involvement with the community through sport or community groups.

The impact of these people is immense. Yet they are very rarely recognised for what they achieve. Arguably these people achieve more for people with a disability than the actual disability sector itself. They achieve change simply through living and making people aware of just how they can make society more accessible and inclusive for people with a disability.

Before Christmas many disability groups, including Deaf Australia and Deafness Forum, had their funding cut. Arguably now, more than ever, the responsibility has fallen on individuals to continue to fight for access and inclusion for people with a disability. They can do this simply by living their lives and demanding access. In this way they create access and a more inclusive society.

Perhaps it is time to review what creates the most powerful and effective change. Certainly the efforts of individual people with a disability just living their lives largely is unrecognised. Perhaps it is the missing piece in the puzzle that the newly funded Cross Disability peak needs to explore.

Last week I was interviewed by ABC TV. The subject was disability employment. The interviewer asked me whether I thought employment for people with a disability needed to move more to an equity model. Equity is not to be confused with equality because in our society equality does not exist. Because equality does not exist we really need to be thinking about how we can level the playing field.

For people with a disability the disadvantages that they face often means that it takes a little longer for them to get their first job. Moving up the management ladder then becomes another challenge as they face prejudice from employers who often think that just by employing a person with a disability that they have done enough. Consequently not only is unemployment among people with a disability high, but underemployment is chronic. Equity in the form of strong Affirmative Action needs to be implemented to level the playing field for people with a disability.

Skilled and experienced people with a disability are often overlooked for jobs. Particularly the management roles with the higher pay. In the disability sector we all have our stories of the person that applied for 100 or so disability management positions only to be overlooked for the role and a non-disabled person be appointed. If it is a disability job, usually this non-disabled person has no experience in disability but might have had ten years in management, have a PHD and several hundred other letters after their name.

It sounds logical that such a highly qualified person should win the role. BUT it really isn’t . Chances are that this person didn’t struggle through school with little support. Chances are that because this person had little disadvantage they were able to get in the university course of their choice. Chances are that once in university they did not have fight for support to be included and access information. Chances are that when they applied for their first job they did not have to face prejudice and stereotypical employers. Chances are are that they finished their course in the required time frame and did not have to study part-time because support for them at university was not adequate.

This accumulated disadvantage is why disability employment needs an equity focus. Expecting people with a disadvantage, such as people with a disability, to be able to compete equally in the employment market with people who have not faced disadvantage is unfair. To assist people with a disability to be able to compete we need to have a structure that supports equity. It is not just about  a job, it is about allowing people to reach their full potential, valuing this potential and providing people with a disability with an opportunity to compete fairly. Merit and equal opportunity principles just do not hack it.

In my last job I promoted a philosophy that disability was a vibrant market that requires investment. . As the community becomes more accessible more people with a disability begin to spend their money. They spend it at the shops, the restaurants, movies, tourist attractions and the like. It’s simple really, the more access that people with a disability have the more they contribute to the economy. The economic contribution from people with a disability is then multiplied by the contribution of their family and friends who take part in the activities with them. This combined contribution more than covers any investment towards disability access.

I pushed this idea very hard for 18 months and got nowhere. Then one day, on Facebook, I noticed a consultant that was pushing the very same idea. I contacted the consultant and asked him if he would come and talk to my manager about possibilities. I arranged the meeting and my manager reluctantly agreed to it.

Now the consultant was not visibly disabled. Knowledgeable in disability, yes, but not visibly disabled. He met my manager and ran off the very same philosophy that I had been pushing for 18 months without luck. My managers eyes lit up. After the meeting she spoke to me. She spoke as if the information that she had just heard was ground breaking. She suggested that she had never thought of it like that (YEAH RIGHT LIKE I NEVER MENTIONED IT!). She waxed lyrical about the opportunities that might happen if the organisation “Invested” more in disability access. She had become a convert!

What she did not know is that the consultant and I basically were an item. What she did not know was that the consultant and I had developed a strategy to sell the idea of “Accessible Markets” We were virtually in cohorts. Not to worry, she bought it, whatever works I guess.

And the consultant did very well out of it all. He was contracted to assist in the organisations disability action plan. He ran training workshops for staff. Planning sessions and the like. He was even contracted to help develop a report on developing an accessible festival event. In a few short months he got things on the agenda that I had not been able to in 18 months prior. It would have cost the organisation a pretty packet too.

Why did it take this consultant to get the organisation to buy into this philosophy? Sure his knowledge and resources were outstanding, but his message was not really any different to what I had been pushing for 18 months. And all through it he I worked together. He would email me when he was getting frustrated with a certain person and I would then go sort it out. I would email him and ask him to push a certain message and together we would push the strategy. That’s not to say that he and I agreed with everything, we didn’t, but with this guy I achieved more in 6 months than I had 18 months previously.

What is it about my nearly 30 years of knowledge that my manager did not value? What was it about the consultants knowledge and message that convinced her? Well my theory is that she simply did not see a person with a disability as her equal. She saw the not visibly disabled consultant as someone with expertise on par with her own. I was just a mere pleb.

All over Australia I am betting that prejudices such as those I experienced with my manager exist. All over Australia I am betting that there are people and managers that simply can not consolidate the idea that a person with a disability might be their equal or superior.

And that is large part of the reason why people with a disability are among the lowest paid in Australia. That is a large part of the reason why 45% of people with a disability live in poverty in Australia. These attitudes and prejudices have to be addressed. Its not going to happen through our current equal opportunity approach. It certainly isn’t going to happen with Australia’s weak disability discrimination laws. It is time to look seriously at a model of equity to support disability employment in Australia. If we do not, the serious disadvantage that people with a disability face to obtain employment in this country is unlikely to change.

But then and again – What would I know?

It was a sweltering night last night. Outside the rain poured down as thunder boomed and lightening flashed. Only in Australia can the weather be so contrasting. One tends not to sleep when the house is hot. Last night was no different and I tossed and turned as sweat poured off me with abandon. Sleeplessness has a funny way of making your mind go into overdrive.

No matter how hard I tried to distract myself, my mind kept coming back to the Deaf community. The Deaf community has been good to me. Indeed I owe my career to the Deaf community. I owe my marriage to the Deaf community. I have countless wonderful memories that are all down to the Deaf community. I have life long friends that originated from my involvement in the Deaf community. Most things positive in my life come back to my involvement with the Deaf community.

My mind went back to my first visit to the South Australian Deaf Club back in 1983. I walked in quite apprehensively, not knowing what to expect. The previous week I had gone on a deaf youth trip to the Monash playground and I had been encouraged to come to the Deaf club. I had enjoyed the youth trip so I thought I would give it a go.

As I walked into the Deaf club at the now defunct 262 building I was immediately surrounded by people. Some of these people were fellow students at the school that I attended that were part of the Centre for Hearing Impaired. Some of them were just complete strangers. My signing then was very rudimentary and consisted almost entirely of Signed English. Communication was somewhat stilted.

What hit me were the questions. Who are you?  Where are you from? What School do you go to? Do you sign? Are you oral? How did you go deaf? Are your mum and dad deaf? Do you have a brother and sister who are deaf? Do you play cricket? The questions seemed never ending. I had not experienced anything like it in my short life to then.

What surprised me at the time was the diversity of communication. A couple of people twigged on that I was very oral.  Wanting to show me that they were very oral too they began to converse in speech. With hearing aids I heard quite a bit back then. I was struck by the sheer loudness and tone of the Deaf accent. It was either extremely high pitched or very low, almost guttural.

Then of course there was the contrast in the proficiency of the signing group. Many people in my age group had just discovered the Deaf community. Many of them also had very rudimentary signing. Many had been part of the failed Signed English experiment. For many their language was delayed and their literacy poor. For many, like me, the Deaf club was their first introduction to sign language.

It was also for many, as I was, the first time that they had felt truly comfortable in a big crowd. It was the first time that everyone almost seemed equal. It was the first time everyone went out of their way to communicate. No matter the various skill levels, we were all in this together. We were going to make it work.

And of course there were the native signers. These were the people who had Deaf parents,siblings and extended family. Naturally their signing was fast and fluent. And to me almost incomprehensible – But even these people also went out of their way to communicate with me and welcome me. It was a wonderful feeling.

This was 1983 and it was my first introduction to the Deaf community. From this first visit to the Deaf club I became involved in the cricket club. I was later roped into being part of the committee. This was the start of countless involvements with various committees and volunteer roles within the Deaf community. From sport, Boards of management, lobbying groups and advisory groups my involvement has been widespread. There are very few communities that love their committees like the Deaf community.

But always there was this diversity. You see many, many – some would say most – people in the Deaf community do not discover it really until their teens. As they discover it they begin to learn Auslan. Some become very proficient. Indeed many for whom Auslan is their second language actually are now at the forefront of teaching and promoting Auslan. Others, like me, become proficient but rather sloppy. Others struggle forever to learn Auslan but still remain active within the Deaf community. In my time the Deaf community has embraced them all.

This is even more so today. As the cochlear implant became more widespread it became the norm. People that attended the 2012 Australian Deaf Games commented that most participants had cochlear implants. Indeed cochlear implants are even the norm at the Victorian College of the Deaf which is a bastion of the Deaf community.

Yet despite the cochlear implant becoming the norm young implantees still seek out the Deaf community. They get involved in social groups and sport. Like me their introduction to Auslan is very much in their teens. Some embrace and learn Auslan at ease. Others, like me become proficient but sloppy. Others struggle to learn Auslan forever. But still they are welcomed into the Deaf community.

And the Deaf community must embrace them. For without these people the Deaf community would struggle to survive. These people with cochlear implants become active members of the community. They are involved in sport, the arts, the politics – in fact they are involved at every level of the Deaf community.

As they have become involved in the Deaf community the values of the Deaf community have also changed.  One could argue that music is now a much more valued commodity of members of the Deaf community than it has been in the past. One could argue that needs and priorities of these new members of the Deaf community have also changed. For example technology has become a necessity and English is more widely used. Consequently how the Deaf community represents and supports its members has needed to change also.

With this in mind I was greatly concerned with the new membership structure that that is being proposed for Deaf Australia. As I understand it Deaf Australia wants to test its members proficiency in Auslan. I am not sure how it will be done but it is a complicated structure where Deaf Australia aim to test members proficiency of Auslan. A members proficiency in Auslan then impacts on their voting rights and ability to be a member of the Board. No one is excluded outright but indirectly, a members ability to influence Deaf Australia’s decision making will depend on their proficiency in Auslan.

Personally this type of membership structure alarms me. I can understand that there is a push to preserve Auslan as a language, hence the idea of encouraging proficiency.  At the same time it smacks of elitism. It is at odds with the Deaf community that I know that is welcoming and encouraging of everyone. Worse, at a time when Deaf community institutions like Deaf Australia are under threat, it could well scare off potential new members of the Deaf community.

I have a great friend who signs very well. However, he has a cochlear implant and his signing has a very strong English influence. For example he will sign “as well”  as in “peter plays cricket and golf as well” as – “as health” In Auslan the correct sign for “as well” is “too” as opposed to “well” which is aligned to the concept of health. My friend will also sign “affairs” as in “public affairs” using the sign that is more aligned to marital affairs. Simple mistakes, but where would he stand in terms of an Auslan proficiency test?

He probably would be fine. My greater concern is that such a membership structure ostracises those members of the Deaf community that are not proficient in Auslan, particularly for those for whom learning Auslan is always a struggle. Ok, I understand with the new membership structure these people can still be involved in committees and so on if they have the right skills but the degree of their influence will depend on their Auslan proficiency. This just seems so unfair.

To me this new structure is at odds with the welcoming and very fair Deaf community that I joined all those years ago. Are we going to extend this structure to other groups like sporting groups where if you are good at sport you can play but have limited voting or decision making rights? It just seems so wrong and very out of place in a Deaf community that needs all the support that it can get.

* I welcome clarification of the Deaf Australia membership structure and apologise if I have inadvertently got it wrong. I am hoping it is not as drastic as I have described it.

* * In the last edition of The Rebuttal we had a poll that asked readers to state whether they thought that Deaf Australia and Deafness Forum should have their funding restored. As of Thursday 8th January statistics indicate that 222 people have read the article The New Frontier. Of these 17%, or 38 readers, responded to the poll – results were:

As someone who has worked in disability employment for a long time, it is the providers that lobby the Government and drive change for deaf people. DA and DF are totally out of touch and have done sweet FA to improve access, services or outcomes for deaf job seekers. They never speak to us, work with us or leverage our knowledge. Wasted opportunities.

Get rid of them I say. Deaf people need to stand up for themselves.

Posted by – RealityBites at The Rebuttal on January 4, 2015 in response to Merry F#*king Xmas

Readers of The Rebuttal will now be aware that both Deafness Forum and Deaf Australia have been defunded by the Government.The above comment was in response to the article that was posted at The Rebuttal just after Xmas. The article had described the circumstances of a mother who has a child who is both deaf and autistic. Recent clampdowns on welfare by the Government have seen this mother, and many in similar circumstances, become severely disadvantaged. The article suggested that never before has there been such a strong need for disability advocacy such as that which is offered by Deafness Forum and Deaf Australia. It seems that there are some out there that disagree.

I still struggle to understand the purpose and role of both Deaf Australia and Deafness Forum, other than to employ a small handful of deaf people within the organisation. The aims of both organisations are not clear, and the outcomes they intend to achieve (or have achieved) are not visible nor measurable, which is likely to be a factor in why they are given the chop. To the Government and Pollies, DA and DF appears to suck in a lot of money, but provide little output to Australian society as a whole.

Posted by Clare at The Rebuttal – January 4th, 2015.

It is interesting because the people that took the time to post at The Rebuttal page did not endorse either Deafness Forum or Deaf Australia. While I would not say that the responses were overwhelmingly anti DF or DA there was a common theme. This theme suggests that both DF and DA are and were out of touch with its constituents. The article in question was well read, with over 600 hits, yet the only people moved to comment had nothing positive to say about either DF and DA. No one offered any support. It begs the question as to whether DF and DA have actually run their course in terms of their effectiveness. (Pleasingly comments made at the Facebook postings of the article overwhelmingly supported the mother – but none offered support to DA or DF.)

To balance up this view one perhaps should consider comments made at the Auslaners Facebook group. This is a large group with over 3000 members. Comments from members of this group were overwhelmingly supportive of Deaf Australia. However, even here there were some dissenters who supported the Governments decision and others, including this writer, who were urging Deaf Australia  to work closely with Deafness Forum to consider pooling resources in the form of a merger.

This all raises the question as to whether DA and DF have reached their use by date. It raises the question as to whether the models of advocacy that they employed have become outdated. There are those that want to blame the current Government for DF and DA losing their funding. But I believe that the previous Labor Government set the train in motion and the current Government just finished the job.

Bill Shorten, when he was Parliamentary Secretary for Disability, often expressed his frustrations with Disability Peaks. His view was that the respective Peaks often gave the Government conflicting messages. Shorten is known to have asked how the Government was expected to formulate Disability policy when the Peaks were all pulling in different directions.

I believe it was Shorten that set the train in motion to investigate a more effective way to fund disability Peaks. The current Government has simply enacted the recommendations that came from these investigations. As a consequence the new model of cross disability representation that has been funded, in my view, has the bipartisan support of both the major political parties. The Greens appear to be offering a lone dissenting voice.

On the Auslaners Facebook page there was a strong push to protest the decision and try to get the Governemnt to reinstate Deaf Australia’s funding. In the short- term I feel such a protest will be futile. In the short-term both DF and DA a need to seek alternate funding from other sources. These might be grants or they maybe business initiatives that tap into the NDIS.  The reality is that future is not bright. It would seem that both organisations would need to cut their losses, shore up their assets and return very much to their voluntary roots. Jobs will go unfortunately.

It may well be that advocacy for Deaf and hard of hearing will now become more State based. Let us consider the NDIS. As the NDIS is rolled out people with a disability, and this includes Deaf and hard of hearing, will be accessing the community more and more. This means locally based facilities will need to become more accessible so that people with a disability can get the full benefit of their NDIS packages. Most of this advocacy, arguably, will be done at State level rather than a Federal one.

Consider DeafVictoria with their campaign for communication access for hospitals. Health is controlled by the States so it makes sense that this lobby be done at a State level. People trying to access the NDIS will need support  at State level too to ensure they get the right information to be able to develop the strongest possible package that they can. Improvements in Education access is also a State issue. Perhaps rather than focusing on a strong Federal Deaf peak we should be strengthening advocacy at a State level.

It could well be in the future that State Deaf peaks have the control and agree on what are the issues that need to be lobbied Federally such as employment, captioning as well as Deaf community language and cultural needs. It could well be that the State Deaf peaks identify and agree on  these key issues and then work closely  with the new Cross Disability Peak that the Government is funding to ensure these issues are represented properly at Federal level.

Certainly with the introduction of the NDIS disability advocacy will need to change. Lobbying for funding of Deaf Peaks might need to occur at State level rather than a Federal one. This will mean competing with established organisations such as Deaf Societies or working closely in partnership with them.

Either way the Deaf and hard of hearing communities need to get smart. They have to realise that the model of old  presented by DF and DA may well be outdated. The crux of the matter is that both DF and DA have known for some considerable time that they would not be funded individually and that to survive they had to be part of a cross disability consortium. Unfortunately the one that they chose was not successful.

If we were going to rally to save DF and DA it needed to have happened long ago. Now it is just too late. It’s time to take stock, analyse the system and work out how Deaf and hard of hearing issues can continue to be strongly represented. Unfortunately I feel it is not under the old model. That ship has sailed and its time to work out how we can all fit in with the new structure.

As Einstein once said – “The world as we have created it is a process of our thinking. It cannot be changed without changing our thinking.”  In terms of advocacy for Deaf and hard of hearing that’s where we are at. The solutions, unfortunately, are likely to be painful for many.

It was a really merry Xmas for the leaders of many of our Disability Peaks this year. The Abbott government, showing all the compassion that it is renown for, announced that many Disability Peaks had been defunded. This just three days before Christmas. For many that worked within these peaks either as CEOs, administrative workers or project officers,  Xmas came with the knowledge that they were about to be out of a job.

For those not in the know, Disability peaks are those organisations that advocate to the Government on behalf of people with a disability and their families. In the Deafness sector these peaks were Deaf Australia and Deafness Forum. Through the skilled advocacy of these organisations many programs have come about such as the Auslan for Employment Scheme that was later expanded to include live captioning. We have also seen steady progress and improvement in captioning and telecommunication access among other things.

Sadly both Deaf Australia and Deafness Forum are among the peaks that have been defunded. They are currently in for the fight of their life to stay afloat. In the short-term they are unlikely to have their funding restored. They will both need to work very closely together to ensure the needs of Australians who are Deaf and hard of hearing are heard. They must carry on without funding. A merger is on the cards.

This Government has no clue as to what it is like to live in Australia with a disability. It seems to not care that Australia performs horrendously in providing support for people with a disability. Why else would 45% of people with a disability live in poverty? People with a disability are among the most vulnerable in Australia yet the Government has them firmly in its targets. Meanwhile mega rich mining and media moguls continue to get tax breaks and abuse the system.

Cruelly one of the Governments targets is single parents. Currently as soon as a single parent’s child turns 8 years old single parents are being forced on to Newstart. They are being made to look for work. This requirement in itself can be very unfair but if your child has a disability it becomes even more so.

My friend is the mother of a child who is deaf and also has autism. She has been forced on to Newstart. My friend already works five days a week but with limited hours. Luckily she works at her son’s school but must be on call to deal with any adverse behaviors that might happen. Last week, as an example, her son head-butted a glass pane door of his classroom because he could not get in. It smashed and he cut his face all over. Said my friend, “ He was damn lucky not to have cut his eyes or a major blood vessel. Bled like a stuck pig. Added 20 years and too many grey hairs to count.”

While this sort of incident is extreme her child’s challenging behaviours are common enough. It means that my friend has to be available at call. She requires a flexible work environment which she, luckily, currently has. Her family is not close by to support her apart from her elderly grandparents who are unable to offer support. Her ex-husband has his own health issues and the bulk of her sons care falls almost solely on her. She gets no respite care from the Government because she cannot get this unless she is, “going to hurt my children or myself.” The NDIS is currently not an option either because its not due to be introduced to her area until 2016, if at all.

At home she also has to deal with meltdowns. She is trying to assist her deaf child with language development. She is assisting her child with his education that is inevitably interrupted and challenged through autism and deafness. She is also trying to give fair attention and love to her other child. On top of this add the additional expense of broken objects and laptops that can be the product of behavioural meltdowns.

My friend does not get carers payment from the Government because – “ I don’t provide constant care in the home because he goes to school” She gets carers allowance that she must split with her ex-husband. This provides her with the princely sum of $56 a fortnight. Previously she got single parenting payment but now she has been shafted to Newstart she has lost $205 a fortnight.

AND to top this off, because she has been shafted to Newstart, she is expected to apply for ten jobs per week. This single mother who can be called from work at any time to care for her child, who has the sole care of a child who is both deaf and autistic, a child that has challenging behaviour at home and school that requires her constant vigilance, who also has the sole care of another child … This mother is expected to look for ten jobs per week! Why? Because the Government thinks she is a LEANER and somehow has the capacity to not only look for ten jobs a week but also work full time. As she so eloquently put it – “How f#*ked is that?”

This is what the Abbott Government wants from people who have next to nothing! Meanwhile the worlds richest woman, Gina, is floating on her luxury yacht, sipping an adult beverage whilst getting tax breaks left, right and centre. To top this off Dr Death Morrison has been appointed Minister of Social Services and our advocacy peaks have been defunded. AND the NDIS is about to be used as a pawn for the Government to push through its unfair welfare cuts! Indeed – How f#*ked is that?

 Merry F#*king Everyone!

I am tired. I guess after 30 years or so as a disability advocate you get that way. Sometimes the job is really demoralising. Last week this hit home in a way I have not experienced for a long time. I was attending a professional development workshop. This was my second week of attending such workshops having just attended a full week of various workshops in Perth. People at the workshop I was attending were having a moan about the Perth workshops from which we had just come. They were moaning about having to hear of the same information over and over again. Said one person, “How much longer do we have to keep hearing about Universal Design!”[1]

Normally I would not react to such comments. However, this time I took umbrage. I took umbrage because all the people at the workshop were disability practitioners. It is their job to ensure that such workshops are fully accessible. Now to start with I had to provide my own Auslan interpreters because organisers of the workshop had not thought to budget for access needs, despite asking if you had any on the registration form.

When I came to the workshop the layout of the room had given no thought as to where the interpreters would stand. No tables had been reserved so that the deaf person could be seated appropriately to use the interpreters. There was apparently a hard of hearing person at the workshop too. The sound system only worked at different points of the venue and their was no captioning. This was a problem for the interpreters too, because they had to stand at random points in the room and at certain points they could not hear anything.

Then of course one of the speakers was a person in a wheelchair. Tables had been laid out so that the person in the wheelchair had to weave in and out and around chairs in a way that would have tested a participant of the giant slalom. The layout would also have tested the patience of the blind participant with her guide dog. Even with her guide dog she banged into chairs and tripped over bags that had been left out with no thought to her access requirements. Planning for these things is what universal design is all about.

And here we had experienced disability practitioners moaning about having to hear about universal design again. YET they seemed incapable of implementing what is a very basic concept. Sure it takes a little bit of thought and planning but this is what these people are paid to do. It’s precisely because these people can’t implement the concept that we have to keep talking about it. Again and again and again! No wonder disability advocates get tired.

I sometimes wonder if it is all worthwhile. I often think that I would have loved to have a different job. A job at Bunning’s for example. I would love a simple job that I can go to and then come home and completely switch off. But this is never the case for people with a disability. They have to be constantly vigilant.

If you are a person in a wheelchair chances are you will be in danger of pooping your pants because some twit has used the accessible toilet as a storage room. If you are deaf chances are you are gonna miss your train because the platform has been changed and they have only announced it on the loud speaker. If you have some kind of physical disability a lot of Melbourne’s trams are of no use to you, whatsoever, because the only way to mount them is up steep steps. Many train stations are also inaccessible. People with a disability need to be constantly alert and prepared simply because our society is a series of constant barriers. It should not be this way.

Kelly Vincent, a person with a disability and a member of the South Australian parliament, touched on these issues today at Stella Young’s memorial. Vincent spoke about the tax-payer money of people with a disability not being used to provide proportionate access for people with a disability. People with a disability pay taxes so it is fair to say they expect value for their buck. But no, the barriers still exist and they are being broken down ever, ever so slowly. It is shameful really, especially for such a rich country like Australia.

Vincent suggested that sometimes it takes an event like Stella’s death t wake people up. Access is straightforward really. She used Stella’s memorial as an example. The trams to the venue were accessible. The organisers had picked a venue that was serviced by accessible trams. There were ramps to the stage for wheelchair users, Auslan interpreters and live captioning. The event was filmed and great care was taken to ensure that the interpreters were in shot and visible all the time. Captioning was live and on screen too for all watching on television. One speaker was even using a communication device and was provided with assistance so that she could stand safely at the podium. Access of this kind is possible everyday, but rarely happens. Stella, even in death, was teaching us all a lesson.

This is in stark contrast to our leaders, who even in a time of national emergency cannot think of access. All of us were shocked this week about the tragic siege of the Lindt Café that led to the death of two hostages. Prime Minister Abbott, addressing the nation on the Governments response to the tragedy, neglected to have Auslan interpreters at his address. And this happens all the time despite the policy that states that Auslan interpreters must be booked when information is being broadcast in relation to national emergencies.

And this is why disability advocates get so tired and demoralised. The same simple and basic mistakes are made time and time again. We repeat ourselves over and over and the response from the people we are trying to influence to change is – “Do we have to hear this all over again?” It seems all so futile sometimes.

And then something happens to remind us that people actually do listen and do care. Something reminds us that people are actually listening to and are influenced by what we say. In this case it was my 13 year old son. And it was nothing to do with disability access.

Last week, as the Islamophobes reared their ugly heads in the wake of the Lindt Cafe siege, my son was moved to post this on Facebook – “For everyone saying racist things to muslim’s, it is not their fault, nor responsibility, for these idiotic “extremists”. It doesn’t matter what religion you believe in, if you are a bad person, you will do bad things. Lets not put blame on innocent people”

This profound statement reminded me that what we advocates do is all worth it. It is worth it because we actually do have influence. My wife and I are big on social issues, anti-racism, anti-discrimination, pro inclusion and so on. And my lad with this little statement reminded me that people listen and people are influenced by the things we say. Eventually the message hits home and change happens. That my lad has been influenced by the values that my wife and I practice was a real boost for me.

Change has happened, and change will continue to happen simply because we advocates keep hammering the message home. Because if we stop, the alternative is totally unpalatable. But gee I wish some of my colleagues in the disability sector would set a better example. It is their actions that demoralise me the most.

But we continue because in the words of the late and great Stella Young,

“I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching “Buffy the Vampire Slayer” isn’t referred to as achieving anything because she’s doing it sitting down. I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.”

And that’s what I want for Christmas so the fight continues. Merry Xmas everyone!

[1] (Shortly before this my Auslan interpreter had interpreted a side comment from an attendee at the workshop – The MC was discussing Aboriginal issues and the person had apparently uttered to their colleague as an aside –‘I haven’t come here to talk about Aboriginal issues.” – The disrespect of this comment shocked me to my core.)

‘But in case I get hit by a bus tomorrow, I want to make something clear. I am not a snowflake. I am not a sweet, infantilising symbol of the fragility of life. I am a strong, fierce, flawed adult woman. I plan to remain that way in life, and in death.’

Stella Young –

When famous people die we often ask our friends – where were you when …. ??? I was in a petrol station filling up when I saw on the TV in the petrol station that Princess Di died. I was at Manor Farm oval meeting a friend to play soccer when he told me that Elvis had died. I was a peanut in my Mothers tummy when Winston Churchill died.  I remember being really moved by Steve Irwin’s death. I watched his funeral on TV.  When Bindy gave her eulogy, all 8 years old of her, confident and articulate, I turned into a blubbering wreck.

I was on the train today when I heard of Stella Young’s death. I was flipping through Facebook, trying to pass the time before arriving at work. And there it was, someone posted that Stella Young had died. I thought it was a hoax. It was not possible. And then posts started to appear rapidly announcing her passing. And I cried. I looked down at my iPad and cried. I walked to work from the train station and I cried. I had to stop at a café to compose myself. I ordered a coffee and I cried. Even now as I type this the tears are welling up.

But I never met Stella in person. Like most people interested in disability activism I knew her through her writing. I knew her through her television appearances. I knew her as an editor of the now defunct Ramp Up disability Blog. It was not until today that I realised just how much her work, her views and her life had impacted on mine.

I had the privilege of being contacted by her when she was editor of Ramp Up. You see, unbeknown to me, she was a reader of The Rebuttal. She had read a piece that I had written about a conference organiser who would not provide interpreters for me to attend. I wrote of how I put pressure on the conference organisers by emailing them and all of the speakers who were to present at the conference. She loved the piece and wanted to publish it on Ramp Up. “The Rebuttal”, said Stella, “..is awesome.” Coming from a person who is perhaps the best writer on disability of our age, this was high praise indeed.

When I read of her passing I was moved to post my own tribute to her on Facebook. The word that kept coming to me was Inspiration. I had to force myself to not use the word. People that followed Stella’s career would know of her loathing of the word inspiration. She wrote and spoke about this loathing often.

In a Ramp Up article Stella had this to say, “Inspiration porn shames people with disabilities. It says that if we fail to be happy, to smile and to live lives that make those around us feel good, it’s because we’re not trying hard enough. Our attitude is just not positive enough. It’s our fault. Not to mention what it means for people whose disabilities are not visible, like people with chronic or mental illness, who often battle the assumption that it’s all about attitude. And we’re not allowed to be angry and upset, because then we’d be “bad” disabled people. We wouldn’t be doing our very best to “overcome” our disabilities.”[1]

Until I read this piece I had always struggled to articulate the unease I felt about inspiration porn. I had always hated the photos of little disabled children struggling to walk on crutches or leg braces while TV celebrities wept as they looked on. I had always hated those videos of children who had received cochlear implants. Inevitably the child’s eyes open super wide as the implant is switched on and the headline screams “CHILD HEARS” These people cared and I hated it. Why????

But Stella had the answer. Said Stella of the motive behind inspiration porn, “…it’s there so that non-disabled people can put their worries into perspective. So they can go, “Oh well if that kid who doesn’t have any legs can smile while he’s having an awesome time, I should never, EVER feel bad about my life”. It’s there so that non-disabled people can look at us and think “well, it could be worse… I could be that person”.”

And that was it in a nutshell. Inspiration porn is designed to make non-disabled people feel good, not people with a disability. The motive is nearly always to make non-disabled people think – “ ..thank fuck I am not like that.” And that’s why I and many other people with a disability hate it – Because it makes people with a disability out to be lesser beings. They are deficit!

I will always be thankful to Stella for having the courage to say this loudly and publicly. She put into words what many of us felt but could not or feared to articulate. Stella pointed out often that if people with a disability protest or show our revulsion for inspiration porn they are made out to be miserable bastards. They are made out to be ungrateful and unreasonable. But if you were told every day that your existence is only worthwhile if you are able bodied and normal – Well pardon me if there is an overwhelming desire to say – UP YOURS!

So Stella Young has died. Of course we must grieve. Grief is a natural process. But we must not grieve too long. We have the responsibility to carry on Stella’s legacy. Through her wit, her charm, intellect and sheer desire she has created waves for the disability community to surf. Let’s use Stella’s death to create waves, to knock down barriers and change attitudes. As we do this let’s have fun, lets party and even knit. Let us show the world that disability is, more often than not, a life worth living – VALE Stella – I promise you your legacy will not go to waste.

I could not resist closing this tribute with the delicious example of black humour from my friend Samantha Connor who is, like all of us, devastated at Stella’s passing:

“There is a very competent lawyer in WA, Prue Hawkins, who also has OI. She is older than Stella but also has stylish hair and a flair for fashion so is often confused. I tell Shaye that Stella has died, and she tells me she often saw Stella in the city – Shaye works in law. No, Stella lived in Melbourne – you saw Prue, I tell her. Then I get the giggles thinking how funny Stella would have found the thought of thousands of people spotting Prue or others with OI and coming up to them, mouths open, saying ‘OMG I thought you were DEAD’ – she would have found their shock and horror deliciously amusing.”

Indeed I reckon Stella, with her impish sense of humour, would have found this hilarious!

Let the celebration of her life begin !!!

[1] http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm

Many years ago as I was beginning to establish my career I was a support worker for a girl with a severe disabilities. One of the things that I had to do was take her to recreational activities. These activities were decided by my boss. My boss had this misguided idea that the activities were decided in consultation with the girl. Given that communication with the girl was difficult and that my boss could not communicate with her, this was a bit misleading. But she was the boss so I just went along with it.

Inevitably activities were things like craft groups, walking groups and things like that. My client was a young woman and participants were usually elderly women who were not disabled. They would would say a cheery hello to my client when she arrived and then proceed to ignore her for the rest of the day. They would go on their bush walk and my client would keep up the rear. Usually after ten minutes she would kick up a fuss because she did not want to walk any more.

The elderly ladies would look back as she screamed and kicked things. They would ooh and ahhh and shake their heads. They would then pick up the pace leaving my client sitting in a heap. Around this time I would take her home. The activities, said my boss, were best practice in inclusion. I would often point out that my client was not included. “She is just there.” I said. “like a passive object.” My boss didn’t take to well to this suggestion. Fairy tales are much more palatable.

This memory came back to me this week as I was attending the Pathways conference in Perth. Pathways is a conference held every two years for disability support people at Universities and TAFE from around Australia. There were several papers presented that challenged the concept of inclusion as we know it in education. The gist of it was that arranging support to allow people with a disability to partake in education is fine, but is it enough? Is it enough to focus only on their learning needs? Are we missing something?

It made me think of my education at school and later at University. I realised that there was very little of it that I actually enjoyed. Sure I had a few wild parties but even those, when I think of it, I wasn’t really included in either. I would go to a party, I would drink and basically just look on and watch. I couldn’t really follow conversations. Usually any conversations that I had were when some nice woman, nearly always a woman, would take pity on me and strike up a conversation.

This conversation would usually be quite stilted. One because I had to lip-read, not an exact science, and two because the parties were usually noisy and being deaf with a deaf voice meant that it was hard for people to understand me. I am easy to understand when it is quiet, but when it is noisy I struggle to modulate my voice. I ether talk too loud or too soft. Looking back, even though I got sympathy sex from time to time, it was exhausting.

Then of course there is the actual learning. The first time I went to university was at the old Salisbury College of Advanced Education in 1984 to study teaching. I met with the head of the school to discuss my “inclusion.” All that could be done was to ensure that I sat at the front so I could lip-read the lecturer and to remind the lecturers to look at me and not cover their mouths. No interpreters, no note-takers – Nothing! I didn’t last long.

Then I went to Mt Gravatt College of Advanced Education. I got interpreters there and note takers. I was even involved in the student activities organisation committee. I attended numerous meetings and understood nothing because there were no interpreters for these. If there was a shortage of interpreters, which was often in 1985, I inevitably missed out because – I spoke well. But at least I had access to learning material. It was a start.

Three broken legs later in 1986 I gave up the ghost and returned to Adelaide to study social work. I attended the University of South Australia. I met with Dick, the DLO there, who promised me the world. He was gonna organise me a note taker buddy he was. He was gonna get me lecturers note he was. He was a fucking star, brilliant, he did fuck all. So much, in fact, that after four days at Uni and no note taker, no buddy and no notes I had to stand out the front at the lecture theatre and ask for help.

Help was forthcoming. After all these were future social workers. Imagine if they didn’t want to help, the industry would be screwed. But the help was sporadic. My buddies would forget to give me notes. They would rush off to the next lecture. I was always chasing them up. It was not ideal. And there were still no interpreters.

To be fair the University later pulled out all stops. They tape recorded lectures for me and Dick’s secretary would type them up. Problem was she was very busy and the notes came two weeks later so that I was forever playing catch up. They paid someone to take notes for me too. BUT there was still no interpreter.

Everything was focused on ensuring that I got access to learning material. I wonder if this is still the case today? I mean, even though I can get interpreters now, their use is in lectures and group work. If I get note-takers, it’s for lectures and group work. If I get access to technology, the focus is to ensure I get access to information during lectures and group work.

What the literature generally shows is that students with a disability are thankful for support, but the support is often not enough. A theme that comes up often is attitudes of other students who are non-disabled. Students with a disability want to be part of the bigger picture. Not feeling equal and included with their peer’s impacts on their enjoyment and motivation to continue with their studies. Data sadly shows that retention of students with a disability is much lower than those who do not have a disability.

Often just learning is not enough, there is a real desire to belong. Apart from the desire to belong one needs to consider how much having access to peers actually helps ones education. Peers actually talk about what they have learnt. They see things from different perspectives and angles. Having access to natural social interaction allows students with a disability to expand on their learning.

There are many other factors that contribute to retention rates of students with a disability. Sometimes it comes back to learning styles and the needs of specific disabilities. Sometimes students with disabilities necessarily learn differently. University learning is known for its rigidness. Sometimes there are strict and inflexible requirements like the ability to observe, hear or stand. These are called inherent requirements and all are developed with no thought as to how a student with a disability may have developed different skills to complete tasks.

The inflexibility of some academics to bend these requirements is legendary. But students with a disability often simply do the same thing differently. For example nursing requires the person to stand yet there are apparently nurses in wheel chairs in America. I heard a story of a nurse who is a short statured person, she carries a step ladder with her to ensure she can reach where she normally might not. Inherent requirements in Australia have not been developed with any of this in mind.

Inclusion is complex. It is not just about being there. Some people are quite happy to just attend classes every day for four years to get their degree but most people are not. People with disabilities want to belong, they want to experience new things and they want to enjoy. What became obvious at the recent Pathways conference is that inclusion is a holistic concept and if it is to be successful a whole range of issues beyond simply learning need to be factored in.

I can hear the Abbotites now screaming that it will cost too much. All I can say to you is that people with a disability not completing their study will cost more. They will get low paying jobs, they will rely on Government hand-outs and what’s more the money spent on their further education is wasted if they do not complete it.

It’s time to review the art of inclusion. Urgent investment is required

This year hospitals have become my second home. In a period of 14 months I have had five lots of surgery. I first had a knee clean out. I then had my gall bladder removed, something I wrote about in Gary and Mellisa’s Excellent Adventure. Unfortunately when the gall bladder was removed two gallstones were stuck in the duct and I had to go back to surgery two days later. Then in May this year I had a spider bite and had to have surgery to cut away the infected skin. Finally, last month I had surgery on my elbow. In between all of this surgery I suffered from depression, which also necessitated a visit to hospital.

So fed up has my wife become about my love affair with hospitals that she has threatened to divorce me if I go under the knife again. It’s not looking good cos I have now injured my foot and am hobbling about. Single women out there looking for a partner that can cook, I may be on the market shortly.

But hospital visits for the deaf are no laughing matter. Three of my experiences with hospital required me to go through emergency. Now being deaf and going to hospital brings with it the inevitable communication issues. Diagnosis is critical. Diagnosis requires the patient to answer any number of questions. Get it wrong and, well the consequences are not worth thinking about.

Each time I attended emergency, even though I requested it, an interpreter was not provided. When I had my mental health episode I was treated at home. Again I requested interpreters and these were not provided. My poor deaf wife had to do the interpreting for me. It’s not a great situation.

The other times I went to hospital I did so under private health. For the first knee surgery I had an interpreter there from start to finish. This was funded under the National Auslan Booking Service (NABS). When I awoke the interpreter was smiling down at me from the bedside. It was perhaps the only time I felt truly relaxed about a hospital visit.

For my elbow surgery NABS would not provide an interpreter even though it was under private health. Why? Because I was staying overnight and they don’t fund interpreters if you stay overnight. I asked if they could just be there pre-surgery. Nope, didn’t fit the guidelines. Luckily Epworth Hospital saw fit to book an interpreter any way. But as you can see, even with private health, access to an interpreter can be a bit of a lottery.

It worries me. It worries me because not all deaf people have my language competency. Some do not speak well. Some may have literacy issues. For them an emergency visit to hospital can be fraught with danger. Misdiagnosis is a real possibility. Hospitals expect families to interpret but when you have an emotional attachment to the patient this can be highly inappropriate. Imagine having to tell your deaf dad he is going to die – it has happened. Pen and paper don’t hack it either.

Luckily for me I live in Victoria. Representing me I have Deaf Victoria. Deaf Victoria are on the ball and are currently in negotiations with the State government to trying and improve access to interpreters at hospitals throughout Victoria. This is advocacy at its best.

Deaf Victoria knew that talk is cheap. Writing endless letters to hospitals and Government Ministers often ineffective. They realised that to really make the Government and hospitals take note they needed evidence. So evidence is what they got. They consulted with the Deaf community and produced a thorough report on the issues. The report did not make for pretty reading. This report, with its recent and detailed evidence, is what they are using to negotiate improved access to interpreters at hospitals in Victoria.

Appallingly, the research found that:

“ In 62.5% of respondents, no Auslan interpreter was provided at all. In most of these cases, an adhoc way of communication was found, mainly pen and paper, guesswork, gesture, the use of family or friends and reliance on lip-reading.”

Scarily the report also found,

“One third of the sample was forced to rely on family and friends to interpret, and a large number of these family and friends were often Deaf themselves.”

Clearly the lack of access to interpreters and clear communication at hospitals is rife. Reliance on family and friends for communication support is common, even if they are deaf. It is a recipe for disaster. We can only hope that someone does not die or get severely injured before our Government and hospitals see the light.

I am so glad that Deaf Victoria are working on this one. It made me realise that a lot of issues that impact on Deaf people and people with a disability are really State based. Access to education, counselling, recreation, hospitals, mental health services and the like are all controlled by the States. We in Victoria are lucky to have Deaf Victoria funded and working for us. Not so many other States where State based advocacy remains unfunded and reliant on volunteers.

The more I think about it the more I think we should be pushing for stronger State based advocacy. A national body sounds great but the reality is that the real work needs to be done at State level. National bodies have, arguably, next to no influence on State issues. Maybe, given that Deaf Australia and Deafness Forum might be unfunded next month, we won’t have the benefit of a national body any way. Perhaps funded State advocacy groups could form an alliance to present a united front on issues that have a Federal focus?

Even with the NDIS the focus is on providing at State level. Clients accessing the NDIS need strong State and local advocacy so that the States and Local Governments make the necessary improvements to local services and infrastructure. There is no point having a well-funded package from the NDIS if none of the services and facilities are accessible. Who is doing this advocacy?

It may well be time for the States to step up. For me I am lucky to have Deaf Victoria, long may it continue.