NDIS and Interpreting – A Revolution in Progress

Change is a dirty word. We don’t like change. Especially when that change challenges our status quo. We especially hate it when it challenges things that we have fought so hard for. But sometimes change is thrust upon us. Sometimes there is no stopping it. And sometimes we either find away to work with change or it passes us by. In the worst case scenarios sometimes we resist change so much that everything that we have fought for is lost and everyone loses. Change is being thrust upon the Australian Deaf community now in the form of the NDIS. Lot’s of us don’t like it but the NDIS is not going away.

Us Deafies mostly come from hearing families.  A lot of our time, if not most of our time, is spent interacting with hearing peers. This can be very frustrating. It can can be very lonely. Most of us Deafies know of the moments at Christmas, at parties, at home or simply out in the community where we are left out and unable to participate.  We miss the speeches at 21st. We miss eulogies at funerals. Sporting clubs have awards nights or trivia nights and we lack any capacity to be involved. It is soul destroying and frustrating. Potentially the NDIS will help us to beat the isolation of these events and be more involved.

How many of us have wanted to take part in personal training, in a local cooking course, learn a little about gardening at the local Neighbourhood House or learn how to knit properly. How many of us have seen courses advertised locally and yearned to take part but could not because communication would be too hard. Yes, the NDIS can help us participate in these things too.

Or that coaching course to improve our chipping at golf. Or our tennis serve is weak and we want to learn how to be better. Or we never learnt to swim when we were a kid  and would like to finally swim. Or training our dogs and the local dog agility classes. So many things we have wanted to do but communication has prevented it. Yes, the NDIS can help us with this too.

No begging to our Deaf societies. No arguing for access. No special courses. No cringing at being left out at weddings and parties. Being able to celebrate the life of our dear and departed. No begging and no charity. Just us in control and doing the things that we want and when we want. Blimey, if I want I can book an interpreter to accompany me for a drink with the lads at the local. And if you don’t sign you can have captioning to your iPad, laptop or mobile phone. Sure the latter needs a bit more arranging but it can be done. And all through the NDIS.

The NDIS is providing us with choice and control that we previously could only dream of. The potential is huge and we are just now scratching the surface of what we can do. But we are resisting! Why??

Part of the reason is because the NDIS have set a rate to pay for interpreters and it is far less than what agencies pay.  When agencies take their cut and then pay the interpreter it is way, way above the $122 an hour that the NDIS will pay. This is for a number of reasons, mostly that agencies and interpreters charge a two hour minimum. Then of course for jobs over two hours, two interpreters are required.  There can be travel time as well for jobs over 40 k from the Central Business District. It all adds up. The rate that the NDIS pays does not factor these things in.

The NDIS solution to this is to say that Deaf people can negotiate a payment rate with agencies or they can go direct to interpreters and negotiate with them individually. Sounds great in theory but it is causing all sorts of problems.

Under the NDIS  we can self-manage our funding or we can be agency managed. If we are agency managed we can only use registered providers. Very few individual interpreters are registered as providers which means Deaf participants only have the option of using agencies. This can limit how far their NDIS funds can go because of the cost that is charged.

However, if a Deaf person is self-managed they can choose whoever they want to interpret for them. This is causing a number of controversies. I will try to outline these controversies here:

  1. Most interpreters work through agencies. Agencies are their bread and butter. They are reluctant to accept jobs outside of agencies. There are two reasons for this. Firstly agencies pay the interpreters tax and cover them for insurance in event of accident and injury. Secondly they are want to go into competition with agencies (who really are their employers) lest the agencies black mark them and not provide them with other interpreting jobs.
  2. The interpreting community are up in arms about the possibility of Deaf people going it alone and booking whoever they want. They rightly point out there are risks involved if the Deaf person contracts someone without the skills and qualifications to do the job. The interpreting profession rightly feel this is not just dangerous but also unfair. Why should someone without skills be employed over them. Especially when many have paid thousands of dollars to get to the skill level that they are at. Deaf people will point out that as customers they have the right of choice and know who they want and why. One way or the other this area is a huge sticking point that needs to be resolved.
  3. A little known fact is that if the Deaf person chooses to negotiate directly with an interpreter they technically become the employer. Potentially they could be liable for any accidents or injuries that may happen.  This could be if the interpreter has a car accident on the way, for example, or even repetitive strain injuries. The lack of insurance of many individual interpreters is why they stick with agencies rather than enter into individual agreements. This can be overcome through service agreements that outline clearly who is responsible for what. Nevertheless, it is a legal minefield with many risks and not one that many people are equipped to deal with.
  4. Potentially interpreters can get paid more if they go it alone. They could agree to work for an hour only and get paid $122 directly. I dare say this may be more than agencies pay. But add to this insurance costs, travel costs and the like I am not sure whether interpreters actually come out ahead.

These are just some of the issues that we are dealing with. The problem is that nothing seems to be happening to resolve these issues. While I sympathise with the dilemmas of the interpreters, as a consumer I am also very frustrated. I would like my interpreter dollars to go as far as they possibly can but in doing so I realise that this may put me in conflict with many in the interpreter industry. I might get 90 hours of interpreting a year but the reality is that this is really closer to 45 in the current climate given the two hour booking minimum.

I fully understand that to maintain the interpreter industry interpreters need to be paid properly and have their health and safety looked after. If they are loosing money or being undercut by potential cowboys/girls they will leave the industry. If they are injured  from overwork this will defeat the purpose and cause greater strain on an already stretched market.  At the same time I have every right to feel cheated that my 90 hours of interpreting is, in fact, closer to half of that because of current payment structures. Where does it all end?

We could try going to the NDIS  and say pay more, which will be a long journey and not likely to be successful. We can say to the NDIS they need a structure that means we must only employ qualified interpreters similar to Jobaccess and Auslan for Employment. That might be doable but again it would take time. Or we can look at the current pay structures and adjust and change them to fit in with the new NDIS climate so neither Deaf people nor interpreters are undersold. Don’t ask me how we will resolve the latter because it requires much discussion as well as a lot of give and take. There is no quick fix.

Potentially the NDIS is a godsend for Deaf people. I would hate for it all to come crashing down because of the issues that I have outlined. It is up to us to make sure that this doesn’t happen. Perhaps it should be our new year resolution for 2018 – develop a working model that will see both Deaf people and interpreters reap the benefits of the NDIS.

Let the hard work begin!

(With apologies for those over 65 who will never qualify for the NDIS – It is not fair!)

 

 

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An Open Letter to Bond University

 

justice1
Graphic is a collection of words that focus on equality and equity such as fairness, justice, equal etc

A friend contacted me recently. My friend lives on the Gold Coast in close proximity of the Bond University. He was excited to enroll in a Bachelor course offered by Bond University. He is deaf and requires support to access the course. He requires Auslan interpreting and possibly some note-taking. This is standard and offered by universities to deaf Auslan users throughout Australia. But not it seems by Bond University.

Let me begin by telling you my story. I am a bit old now. I started University a long time ago. I started at a time when Universities did not offer support such as Auslan interpreting, let alone the live captioning that is also provided today. I fought very hard to get my university, indeed all universities in South Australia, to accept responsibility to support deaf students. I, along with several other deaf students, lobbied over a number of years to get the support we required.

There was much heartache. There was much struggle. I repeated subjects. Withdrew in frustration, returned and finally graduated. It was not until 1993, my final year that, my university accepted its responsibilities to make its courses accessible to deaf students. This was in 1993, the year following the introduction of the Disability Discrimination ACT in 1992.

Access to university, indeed any study, is a subject very close to my heart. I worked for over a decade as a National Disability Coordination Officer. One of a fantastic network of 31 that work hard to make tertiary education and employment successful for people with a disability. I did much work on accessibility for students who are deaf. Particularly in regard to online education and delivering Auslan interpreting/captioning to remote universities to save costs and ensure students in regional areas received the support that they required.

A highlight for me was working on a Webinair with the Australian Clearing House on Disability (ADCET) to deliver an accessible Webinair. The Webinair had not just Auslan interpreting but live captioning. It was ground breaking stuff. I am no slouch, I know my stuff. You can take a look at this here.

While TAFE is still very much a dinosaur and underfunded in terms of disability support uiniversities have generally led the way. Even the small University of Ballarat, where I worked, accepted its responsibilities to provide Auslan interpreting through both its University and TAFE arms. You see education is universal and every person with a disability should be able to access it, wherever they want.

And I know it is not cheap to support students with a disability. Indeed it is a cost that Universities bear. Even though they can claim reimbursement through Additional Support for Students with Disabilities (ASSD) they generally only recoup around 50% of the cost. No matter, they accept their responsibilities. But not Bond University it seems.

And Bond University are not broke either. Indeed your 2016 annual report boasts increased revenue and increased operating surplus. Indeed Bond University is a very successful university. It ranked second in student satisfaction and skills development in 2016. Your annual report boasts proudly that, “In the 2017 Good Universities Guide, Bond University was awarded more 5-star ratings in the student experience category than any other university in Australia for the eleventh year in a row.”

By all accounts Bond University is a very successful university. It’s teaching is first class and its outcomes world class. Yet if you are deaf, sadly, you will not be able to benefit from the world class teaching and outcomes that Bond University offers.

My friend has been told that Bond University, this brilliant and clearly innovative institution, cannot afford to support students who are deaf. Indeed Bond University, that prides itself so much for its student outcomes, appears not to care at all about students with a disability.

In fact this hugely successful university, and seemingly with a healthy surplus, has invested in just one FM system. In a letter to my friend the University claims it has just the one FM system and that – and I quote – “ We don’t have scribes, hearing loops, sign language interpreters.. “

If I were a world class university that boasts the best teaching experience in Australia for its students, that boasts a health operating surplus, well I would be very embarrassed by this fact.

And then your disability support unit has the nerve to advise my friend to consider, and again I quote, “ .. larger (and more generously funded ) public universities as a potential destination.” It seems to me that Bond University are shirking their social responsibilities and seeing disability, or deafness at least, outside their remit.

One cannot imagine a non-disabled person who is considering attending Bond University  being told by Bond University that they should be considering going to a larger and public university. No that would be laughable. It just would not happen. Yet somehow deafness and disability is not valued by Bond University in the same way. Are people with disability or who are deaf second class citizens who are not worthy of Bond Universities world class facilities and teaching?

What is worse is that the Bond University web pages that advertise disability support claim to follow Australian and University guidelines for disability support. Indeed to quote your information you say that disability, “ …support will meet University and Australian guidelines. Support is provided on an individual basis and is consistent with proven appropriate levels of support.”  

I fail to see how not providing Auslan interpreting is an appropriate level of support. I looked through the guidelines and nowhere did I find a guideline that stated it was acceptable to handball responsibilities for disability support to other universities either. I did, however, find this:

It is assumed that approaches to the development, delivery and evaluation of teaching and services for students with a disability should be:

  • Inclusive – Core activities of the University are designed and implemented in order to accommodate the needs of all students including those with a disability.
  • Comprehensive – Provision for students with a disability should cover all core university activities in recognition of the right to participate fully in the academic and social life of the University.
  • Equitable – University responses to the needs of students with a disability should recognise the rights and responsibilities of all parties and ensure that solutions are equitable for all concerned.
  • Explicit – Policies should clearly identify student and staff responsibilities in relation to provision of services and adjustments, the procedures whereby these will be implemented and the mechanisms for resolving disagreements.
  • Systemic – Consideration of the needs of the diverse student population should be embedded within University-wide planning, administrative support and quality assurance processes.
  • Respectful – Universities should ensure that all their interactions with students with a disability are characterised by respect for their rights to dignity, privacy, confidentiality and equity.
  • Consultative – Students and staff should be engaged in planning and evaluation of teaching and support strategies.
  • Resourced – Universities should provide adequate resources to enable the provision of learning environments and services that address the needs of students with a disability.

Judging by the letter that was sent to my friend Bond University have failed nearly all these guidelines particularly its obligations to be inclusive, resourced, respectful, consultative and systemic. Particularly the SYSTEMIC requirement. To be SYSTEMIC the needs of students with a disability have to be embedded in your quality assurance and planning. Certainly having one FM system to assist the deaf and no budget to support the provision of Auslan interpreting and or captioning should it be needed would suggest you have let yourself and students who are deaf down badly on this one.

Note that these Guidelines were developed by the Australian Vice Chancellors’ Committee that prides its self on self-regulation. Certainly in terms of disability support Bond University does not appear to be regulating anything unless handballing responsibility for disability support to another university counts for something.

The Bond University response to my friend is wrong on so many levels. My friend, and all potential students who are deaf, should have an equal right to access the quality programs of the Bond University. To deny them this though the lack of provision of resources or support is clear discrimination. My friend wishes to attend your university because he is aware of its teaching quality, it is close to his home and the degree he wants is offered over two years instead of the usual four. Why should he be denied this wish?

For him to be denied this opportunity is wrong. I urge you to revamp your approach to disability support. I urge you to accept your full responsibilities under the DDA. I urge you to provide the opportunity for my friend to study at Bond University as is his right of choice.

I urge you mostly not to use the old worn excuse of financial hardship to not support people with a disability. Supporting my friend will not make Bond University bankrupt except if you are considering a clause of being morally bankrupt.

Bond University might not be the biggest university in Australia but it offers quality programs. My friend, anyone who is deaf and anyone with a disability should not be denied access to these programs. Please do better.

The Xmas Present

I am lucky in my work. I get to meet lots of people with a disability. I meet all types and it is a great privilege to develop supports for them and with them. I hope these supports make a great difference to their lives. Of course there is no guarantee that supports will be successful. Lots of factors come into play. Bureaucracy, life, markets and just plain old circumstances all impact. As they say, The best laid plans of mice and men.

Last week I met a young lad with his mother and little brother. The lad has Autism. He is a big fellow. He finds it hard to meet new people. He finds it difficult to express himself. He is shy and withdrawn. Questions to him are met with a grunt or a shrug of his shoulders. His answers are given with minimal eye contact. He looks down and just gives furtive glances out of the corner of his eye.

As I walked into the waiting room my client sat slumped in his chair looking at his feet nervously. His little brother, in contrast, was a bundle of energy. He had a baseball cap on back to front and when he saw me he beamed me a bright smile. I tend to do things a little left field sometimes. To try and lighten the mood I went straight to the little brother. I shook his hand and said, “I’m Gary, I’m here to help you develop your supports.”

He laughed and said to me, “I’m not Sam, that’s him over there.” The mother picked up straight away what I was doing and  laughed. Sam, my client for the day, looked at me out of the corner of his eye. I fancy I noticed a small but sheepish grin from him as well. I hoped that my little ploy had worked in assisting to lighten the mood a little.

Of course these sorts of meetings are serious and very formal. I led the family into the meeting room and addressed Sam directly. I explained to Sam my role and told him that I would like to hear from him about what sort of support he would like if possible. He looked down at his feet and shrugged his shoulders. Little brother, perhaps wanting to be centre of the attention again, informed me that Sam, “Don’t talk much.” Mum verified this and said that Sam was not likely to offer much to the process as he rarely said more than two words.

I assured Sam that this was fine. I let him know that anything he did say, even if it was just one word, would be taken seriously and would help me to develop his supports. Even so it was hard to get anything from him. As these meetings go, mum did most of the talking.

Being deaf I have to explain to my clients  how we will communicate. For these types of meetings I use Live Remote Captioning. I explain how the system works and that the captioning is also my notes. I let them know that because I get a transcript emailed to me of the whole conversation I have no excuses for forgetting anything. I show them the screen of my computer and they see how everything that they say gets transcribed. Little brother was fascinated. “COOOOOL” he said. Even Sam looked up from the floor to see what was happening. I sensed he might be beginning to thaw a little.

During the course of the conversation mum explained that Sam gets anxious. He thinks people are staring at him and talking about him all the time. This sometimes causes panic attacks. Sometimes in meetings I recount some of my own experiences. I looked at Sam and told him I used to feel like that. I told him how that when I was his age I used to think everyone on the school bus was talking about me. I told him that because I couldn’t hear them I thought they were all talking about me. I told him how I would be constantly glancing around and how this would make me have panic attacks. I explained how my heart would race and my head feel light. I asked if he felt like this sometimes. He looked up at me directly and nodded.

I sensed that I was starting to break the ice a little. I asked Sam if he could tell me of something that he really wanted. He said, ” I want a drivers licence and I want a job. But I think if I get a job ill be fired.” Little brother said, “WOW” mum just smiled like proud mothers do.

And slowly but surely Sam began to talk a little more. One time we were talking about recreation and Mum was telling me how he liked War Craft. “It’s not War Craft” said Sam, “It’s War Hammer.” He then whispered something in his mum’s ear. “What was that?”, I asked, “The captioner didn’t hear you” Sam obliged to share, “I like history”, he said.

He and I had a little conversation from there. It turned out he liked the history of war. We talked a little of different wars, WWI and II. He said he knew of the Korean war and Vietnam too. Just for that minute or so he spoke directly to me and not at his feet. Little brother exclaimed that he never got on the XBox cos Sam was always playing his war games. I said, “Do you know your caps on the wrong way?” Sam let out a little chortle.

And you know, sometimes when we have clients like Sam we always tend to talk through their carers. We do this because we are time hungry. We do it because we think it will be easier. We often forget the person that it is all about. But sometimes if you make a little effort it is worth it.

As the meeting came to an end I led the family back to the lobby to say good bye. I shook every ones hand. Sam shook my hand while looking at his feet. Little brother ran back to the meeting room cos he forgot his cap. Mum thanked me and wished me a happy Xmas. As the family walked out of the office Sam looked back and gave me a little furtive wave and a small smile out of the corner of his mouth.

I smiled too. I think that was my Xmas present. Just a little reminder that the work we do sometimes can make a difference, no matter how small, on someones life.

Happy Xmas everyone!

 

 

Power Trip

On her way from St Albans to Nottingham, Shona Cobb nearly found herself stuck on a train on three separate occasions. Cobb had booked wheelchair ramp assistance for each required change – but not one staff member turned up to help her. Instead, at one stop, she had to rely on a friendly couple to help her; at another, the only way to prevent the train door closing with her still on board was to stick her foot in it. (https://www.theguardian.com/inequality/2017/nov/15/whats-life-really-like-for-disabled-peopld-disability-diaries-reveal-all)

The above was taken from a revealing article printed in Britain’s Guardian newspaper. For those of us who live with disability everyday it really comes as no surprise. It’s just one of the many challenges that people with a disability must confront everyday. It’s not just public transport that is the issue. For example in the article  a guy with Parkinson’s explains how he struggles just to get in a pub because people think he is drunk. There are no disabled changing rooms at shopping centres to try clothes on  and deaf people are for ever receiving phone calls even though companies that call them have it on file that they are deaf and to text or email.

I thought through my week and wondered if it would make for interesting reading. On Saturday, for example, I woke in a panic because I realised for my meeting on Monday I had forgotten to book either interpreters or captioning. Booking communication supports is the bane of my life. I am sure other Deaf professionals will tell you that they have to be supremely organised. It is one of the main reason I have all of my communication support contacts on SMS, email and even Facebook Messenger. Facebook message to Barney at 9 am Saturday. “I’ve got a ten thirty for two hours on Monday. Can you please check if you can serve. In the meantime I will get it into the online system.”  Barney is, as always, ever obliging and saves me and the day. For good measure he sends me a photo of his new baby … Cute indeed.

It’s late Saturday afternoon and teenage son number 2 finally gets out of bed.  Comes down stairs and stomps around as teenage kids do. Shirtless and in shorts showing the tops of his underpants. He mutters and mumbles something that I cannot understand. He mutters and mumbles something again and adds a few sloppy signs to his message. I tell him that after all these years with Deaf parents he should know how to communicate.  Eventually he gets his message through. Something about not being home on the weekend and needing money for his Myki card. I’ve just read out what I wrote to him. He tells me he wasn’t even home last weekend, and that is true. But it is something that happens very often. 3pm is the new morning and muttering is the new way of saying “I’m skint give money.”

It’s Monday now and I have missed breakfast as I often do. Travelling a long way to work everyday I often try to grab as much sleep as I can and get out of bed as late as I possibly can. Quick coffee and quick shower and I am out. I arrive at work, do the morning stuff and take my phone with me to the Café to respond to any number of emails while having my bacon and eggs. As I am ordering some guy I’ve never met strikes up a conversation with me.  “Please sir, I’m really not in the mood to lip-read strange people.”

I really, really want to tell him this. Instead being the polite chap that I am I try my hardest to communicate with him. He is oblivious to the fact I am deaf. I understand less than 10% of what he is saying. It’s only because he is pointing to photos of items on the menu that I work out he is telling me what he likes to eat. I nod sagely and agree with him that those things are indeed yummy. He gets his coffee, salutes me with it and he is gone. Meanwhile while ordering I didn’t hear the questions from the waiter. I end up with fried eggs instead of poached, no mushrooms and a latte instead of a long black. It is an ominous start to the week.

Back in the office I am frantically getting ready for my meeting with my client. I need two computers. One to do the data entry and one for the captions. Someone had borrowed my laptop charger, unbeknown to me. I notice at the last minute that the laptop that will have the captions is nearly flat as a result. Lucky for me the client is late so I steal another persons charger and get myself set up. The client comes in and we are away.

I welcome the client in. I explain that I am deaf and the lap top will be doing magic tricks and typing everything that they say on the screen. It’s really good I say and I use it all the time. So we start and the captioner informs me she can’t get any audio. I apologise profusely to the client and assure them it will be fixed soon. It is fixed but the captioning is going off screen and I cant read all that is being said. I apologise again and the captioner fiddles with the formatting. We end up having to shut down and start again. 15 minutes later it is all sorted. Lucky for me the client has the patience of a saint. At the next meeting the client has a heavy Indian accent and the captioner struggled to understand them. I tell you that one was hairy but we managed somehow.

It really is no wonder that when I come home I am absolutely buggered. Its hard work. It is constant concentration. I supervise staff and have to lipread them all day. Don’t get me wrong they are great. They try to ensure I miss nothing and do everything that is needed to accommodate my communication needs. But it is tough and its tiring. On weekends I sleep a lot.

You know the world really is not designed for people with a disability. To fit in we have to work very hard. We have to deal with an awful amount of ignorance. There are also wonderful people who just accept and adapt as required, comfortably and naturally. But the weird thing is the ones that work with disability, often don’t get it and are the worst. I will end my little diary with this story.

I have a client who has a rare condition. So rare it does not even have a name. It’s currently the subject of intensive research to identify a mutant gene and give it a name. The end result of the condition is multiple disabilities that manifest in cognitive and physical challenges.

I assisted this client last year. They got a lot of support. Assistance for travel, care, physio and  occupational therapy to name a few. There was support for assistive technology and some minor home modifications. The support was quite comprehensive.

As it is we have to review support every year. There are often delays in getting some support. Particularly for equipment, home modifications and technology. If this happens this support is rolled over to the new support plan. So in reviewing the support this is what I did.

I sent the final recommendations away for approval. The support was approved but to my horror all the equipment for home modifications were removed. I was horrified.  This stuff helped the client get in and out of the house. Have a shower, go to the toilet and so on.

I swore out loud in the middle of the office, several times. I got hold of the person that made the decision by text chat and demanded to know why. They said that because the “Rare Condition” had no name they could only go by the diagnosis that was listed on the computer, intellectual disability and therefore they would not fund the equipment and home mods because there was no listing of physical disability.

I pointed out that this was the case last year but all support was still approved. I pointed out there are any number of reports in the data base that list the disabilities and support requirements. I pointed out the condition did not yet have a name but the result of the condition was multiple disabilities. I said that following the logic of the decision that was made if this person had been a wheelchair user, but the system only listed the intellectual disability, that the decision just made was akin to taking away the wheelchair!

“Look”, said the person in power, “The supports been approved as it is. If they don’t like it they can appeal.” And that was it.

It was left to me to have to break the bad news to the client. Why? Because someone on a power trip didn’t want to consider the evidence in front of them, didn’t want to admit their error and didn’t want to have fix it. It’s just disgusting. This is the hidden shit that people with disabilities confront everyday. My little challenges are really just that – little!

We have such a long, long way to go. It is scary!

Shutting Down

When I was a young lad my mother was my phone. I would get her to call my mate Phil to meet me over the oval to play cricket or soccer. She would do this without complaint. I spent many an hour over the oval with my mates playing sport. I was rarely home. I would be out in the morning and home when it got dark. After school was the same. There was no time to waste. There was a ball to be kicked, thrown or hit. There was a game to be had and teams to be created. There was soccer to be trained for and golf to be improved. That was my life and a lot was obligingly arranged by the phone that was my mother.

As I got older she would sometimes call girlfriends too. As cringe-worthy as it may sound she would sometimes have to call my girlfriend to confirm or make arrangements. Obviously I tried to keep this to the minimum but it was often the only way. This was, of course, in the years before the National Relay Service (NRS). It was before mobile phones. It was before we could reach any one all the time and at anytime. All just from the small electronic device that has become a permanent part of our palm.

I think I saw my first ever TTY in 1985. It was when I was studying at Mt Gravatt College of Advanced Education.  There were deaf students at the halls of residence where I lived and a TTY was provided for them. Of course we could only call people that we knew who had a TTY. My poor friend Bobbie was the only one I knew who had one and I would call her. Probably too much. Sorry Bobbie but it was a novelty for me at the time.

Back in those days the lack of access to a phone drove me nuts. I always had to find someone to call for me. I remember living in England and a girl at a bar slipping me her phone number as we left. I had to get my cousin to call her. He pretended to be me on the phone because I was too embarrassed back then to have to tell the girl that I was deaf. He actually arranged a date for me but I had something else on that night and jilted the poor girl.

That is how it was back then. Lack of phone access was a real barrier for people who were deaf. It prevented them getting jobs. It prevented them calling hearing friends. It prevented them doing simple things like calling a cab or ordering a pizza. It was a pain, but it didn’t kill us did it? We some how found a way.

Then came the NRS in 1995. Suddenly we could make calls on our TTY to anyone that we wanted. OK it was kind of stilted communication but it gave us access. We could call friends. We could arrange travel overseas through the phone. For many of us it allowed us to do jobs that previously we could not.

The NRS excited us  deafies in 1995. We were not to know what would become possible in less than a decade. By the year 2000 mobile phones were booming. The first mobile phones were like bricks. I remember working for what is now Deaf Children Australia. I took a portable TTY and a mobile phone with me on a road trip. It was this massive brick of a mobile phone. I was out on the Great Ocean Road looking for a farm where a deaf kid resided. As I do I got lost and was late. No matter I had my portable TTY and my brick mobile. But dang it there was no reception. I had to drive around for half an hour before I could find any. Eventually I got reception. I put the TTY on the bonnet of the car and dialed the NRS through the mobile. I had to hold the mobile down tight on the phone sockets of the TTY to make it work and type with one hand. But no matter I phoned the kids mum and found my way to the farm house. It was primitive by today’s standards but back then it was OH so exciting.

Of course mobiles then got smaller and smaller. At first you could only send text messages to a phone that was from the same provider – Eg Telstra to Telstra or Optus to Optus.  But thanks to some lobbying from Deaf Australia and the phone companies realising  it was good business they opened up SMS to all phones. It wasn’t cheap and SMS was addictive. At anytime, and without a go between, we could now communicate with people through a text message. At 25 cents a pop a text thread could set you back a pretty penny. It is a far cry from today where we can get unlimited text as part of our phone contracts. I know of many a deaf person who got into trouble financially because they caught text mania. (For the record a text in 1999 cost phone companies something like .007 cents and they charged people 25 cents a message – It was a huge rip off.)

So in a few short years from 1995, where deaf people only had a TTY and the NRS, suddenly our telecommunications options boomed. It was like all of our Christmases came at once. But it didn’t stop there because the internet started to take over. And then there was MSN messenger!!!

Believe it or not I found out about Messenger from my hearing boss. I arrived at Ballarat for my new job as the Regional Disability Liaison Officer and she told me that this was a way that we could communicate with each other. She showed me how to sign up and we were away. I promptly then told my wife and all my friends. Suddenly I had this network of friends who I could contact at anytime! And there were chat rooms. I chatted in those too and a few of the people I met there became Facebook friends later. And you know for the first time I felt equal. In chat rooms or MSN Messenger I could talk with anyone at any time and on my own terms. It was heady stuff.

In a little over ten years I went from having virtually no access to the phone and having to rely on hearing people to make phone calls for me to being able to communicate with virtually anyone at anytime. Mobiles  and data plans became cheaper and more flexible. In the palm of my hand and at my finger tips I had a tool to communicate with anyone, 24/7. Be it text, Messenger, email or occasionally the NRS; communication and independence were finally mine.

Then in 2007 Bobbie, the poor soul who I TTY’d constantly all those years ago, invited me to Facebook. At first the idea of status updates and throwing sheep at people (remember that) did not appeal and I rarely used it. But my wife did and she was on it all the time. First at the computer and then, when data plans became cheaper and the internet more accessible, on her phone. It was not until 2008 that I gave it a proper go.

And I got hooked. Well and truly. By the time I got round to really discovering what Facebook was it had grown into a monster. But it was an exciting monster. It was exciting because it kept me up to date with everything.

Prior to Facebook deaf people missed out on a lot. Captioning on TV was not nearly as good as it is now … On Free to air now (not the new channels) its almost 100%. Of course deaf people don’t listen to the radio either. They cant sit in a cafe and passively take in the gossip and the happenings of the world. They cant sit on a bus and listen to what Jemma heard Sally tell Peter that she heard from Rob who heard it on the radio while driving to work. In short deaf people missed out on heaps. Facebook changed all that.

Tempest would update us every ten minutes about her gay friend who got married in the Maldives but the marriage couldn’t be recognised in Australia and what a scandal that was. And of course all of her 3000 facebook friends had to offer an opinion in the comments. Peter could share about the latest Football scandal and add his opinion about why AFL was dank and the SANFL was better and all of his 15 facebook friends could comment about what rubbish he was talking. All the political news, the scandals and the gossip appeared every second of the day through posts or status updates. All we need to do to be up to date is keep looking at Facebook.

And then Facebook developed video and Auslan was everywhere. And it took over Messenger so that if some bit of gossip came up we could get our besties online and chat about it anytime and all in one spot. Then it developed groups where like minded people joined to talk about like minded things. We could talk about disability things, the NDIS, Football or our favourite music genres.. There were clips and videos and funnies. It was and remains a wonderful thing. The problem is, even though technology and Facebook have made the world more accessible for deaf people, it never stops.

Technology and Facebook consume us. They take over nearly every aspect of our lives. At home families spend all their time on the couch looking at their phones and forgetting to talk to each other. People use it as a tool for bullying and this has led to tragedy. Among the positive there is also a constant bombardment of the negative. Trump is here. Trump is there. Trump is everywhere. Every time we look at him or read something about him there is rising anger and fear. Politics is non-stop. Racism rears its ugly head. Bigotry is in your face every day. For all the times that we are entertained and comforted there are a multitude of times that our sensibilities are constantly attacked. The beauty and the ugliness of humanity is right there in front of us 24/7. It has begun to sap us, well me at least,  of our energy.

I found that I could not switch off. At work I would be focusing on the NDIS. After work any number of people by text, Messenger or usually Facebook would contact me. I was always happy to help and remain so. It could be about applying for the NDIS, understanding a plan, working within the NDIS or just an almighty whinge about how dreadfully complex the system is. It is almost like I was at work 24/7. I often cannot switch off!

It is a roller coaster. It can be funny, it can be poignant, it can be angry, it can be tragic, it can be relevant or irrelevant.  Mostly it is never ending and it all became too much. So I shut it down.

Technology and programs like Facebook have been godsends for deaf people BUT at some point it has become too much, for me anyway. I know it is my fault that I let this happen, I know I became way to invested in this new world and I have no one else to blame except myself. But it became time to switch off and find some inner peace so I switched it off. I am glad that I did.

I will be back soon. But I will switch off regularly. I gotta post Rebuttals after all. Take sometime for yourself, leave your phone at home, walk the dogs, go for dinner or see a movie. Just leave your bloody phone at home sometimes.

We lived quite successfully without mobiles once. A few hours a day or even a week wont kill you but the alternative might.

 

I’m back and I matter.

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I am a proud disability advocate. I have always prided myself on being able to say the things that no one else will say. Too often in life we people with a disability are expected to suck it up. We are expected to be grateful for what we get. We are expected to adapt and adjust to a world that simply refuses, for the most part, to acknowledge our existence.

It is always us that is expected to adapt. In the case of the deaf, we are expected to hear better. We are expected to go through painful surgery to do so. We are expected to pay through the nose to hear better and fit in with the norm. We are expected to organise everything around our access … because it’s all our fault.

Even with the NDIS we are expected to accept what is given. We are expected to do so in the name of sustainability. Currently if we have 65db loss in our better ear NDIS is trying to tell us they won’t help us. A 65 Db loss will mean we can’t hear speech and will struggle. No matter, our needs don’t count cos NDIS has to be sustainable. We, of course, have to adapt. Sorry folks, hearing life rules.

I have been ashamed of myself of late. I have been ashamed of myself because I have been grateful. I have been grateful for support. Grateful for money for interpreting. Grateful for money for captioning. Grateful for my job.

For a while I forgot my own value. I forgot what I contribute. I forgot how much knowledge and value people get from my experience and input. I forgot that I matter.

I began to make excuses for the people I worked with. I began to compromise too much. I began to accept mediocrity.

Worse,I began to make excuses for the appalling behaviour of others. I began to say things like …  “ … but they are so good and supportive of me.

I forgot just how good I am at my job and just how much people get from my input. I began to believe I needed others more than they me. The opposite was, in fact, the truth.

And then something changed. An advocate reminded me that everything needs to be reciprocal. He reminded me that it’s not just us that need to adapt but it is the non-disabled that must adapt too. He reminded me that it’s about co-design. This is where the world and systems should be designed with equal input from people with a disability. I already knew this but for a while I forgot because – “They are so good to me.”

And then they began to exclude. It is done in a subtle way. They would impose on me systems where I could not fully participate. They would insist on teleconferences. They would expect me to adapt. Indeed they expected me to arrange all access needs.

I didn’t matter .. I was a burden. If I wanted my knowledge and experience to count I had to do everything to ensure I could participate. No one else had any responsibility except me.

It came to a head when
I was interviewed for a temporary managers position. “8.30 am tomorrow Gaz” …

I waited for the boss to tell me that she had booked interpreters. It did not come. I sent the boss a rather sarcastic message … “ have you developed super powers of communication or have you booked interpreters for the interview?” She replied .., ” Please book interpreters.”

It was about there I knew I had no chance . Why? Because interviewing me was an after thought. If my boss truly valued me she would have made the interpreting arrangements herself.

I got really angry. I was angry because I was being undervalued. I was just an add on. An inconvenience that did not matter.

And then a colleague was treated unfairly. She had been treated unfairly for sometime. I made excuses for the perpetuator. ” … oh but she is so good to me”,  I would say.

I had begun to be grateful for being included. I began to think that I owed people. Well cop this. I owe people nothing. The knowledge that I have, very few people possess.. If communication issues exist it’s because two people can’t communicate and any strategy implemented is for everyone ..: not just for me. I owe people nothing.

I became something that I find abhorrent. I became a suck up. I was disgusted with myself.

Then and there I decided I could not condone the treatment of my colleague any longer. I wrote a long email to the powers that be outlining the abuse of power I had witnessed.

It was a healing and cleansing moment. But most of all I was able to support my colleague who had been badly treated. One must never be silent when they witness abuse of power. It must be challenged always.

Let me say this now for the final time. What I have to offer is of extreme value. That interpreters or captioning are needed is because two people can’t communicate .. not just me.

That means everyone must adapt and change. It should not just be me doing all the leg work.

That was my reawakening … I am back and I matter. I owe the world nothing. Watch out world.

 

Desensitisation

Picture is of two women. They are looking to the air in desperation. One is holding a gun to her head while holding the other woman close to seemingly to shoot themselves together.

I was at training yesterday. The training focused on disability complaints. How to make them and how to deal with them. This is for when people with a disability are discriminated against, neglected or abused. Of course the training had the mandatory videos. There were two. The first was captioned which was great but the second wasn’t. The interpreter looked at me and rolled her eyes. It was a classic FFS moment. A key disability organisation that focuses on disability discrimination not providing access. I gave the interpreter a wry grin and shrugged my shoulders.

As I did so a colleague tapped me on the shoulder. Another colleague was trying to get my attention. The other colleague pointed at her phone, gesturing to me to check my own. She had sent me a message – It read as follows, all in capitals, “NO FUCKING CAPTIONING. ARE YOU KIDDING  ME – SHOULD I COMPLAIN?!!” My Colleague is hearing and she was livid. I just smiled at her and shrugged my shoulders. Just another day, another incident of indirect discrimination in my life. Years ago I might have been really angry, but today I wasn’t. I wonder where all my anger went.

As the training continued the trainer pointed out that people don’t like complaining.  She pointed out some of the reasons that people do not complain:

  • Fear of retribution
  • Not aware of rights
  • Don’t want to be seen as a whinger
  • Don’t know how

And the list went on.

The trainer continued and she pointed out that apparently less than 1 % of people with a disability complain. I put my hand up about here. I said to the trainer, – ” How ironic that so few people with a disability complain. How ironic is it that Australia’s disability law is built on a platform of complaining. How ironic is it that the only way that people with a disability can get assistance from the law is to complain. If less than 1% are complaining, how effective is that law? It’s totally ineffective and people with a disability get no protection whatsoever.”

The trainer admitted that this was the case. She went as far as saying that the strategies that are used to resolve complaints  have been largely ineffective and needed to be strengthened. She pointed out that Victorian laws had been strengthened recently so that more could be done to address abuse and neglect. That’s great, I am glad abuse and neglect is being addressed. The point still remains that Australia’s disability law does not work. It is toothless. It is cack. It’s so pathetic that the platform of conciliation that it is built does not even mandate that the people discriminating have to come to the table and negotiate. If they choose to not come to the table the only avenue is court and at great expense.  Is it any wonder that less than 1% of people with a disability complain? It was kind of depressing to hear her, a representative that handles disability complaints, tell everyone that complaining was largely a waste of time. But there you have it.

So a little later I went to a meeting that was a consultation about the needs of people who are Deaf and mental health. Basically the Mental Health Commission wanted to know how deaf people were engaging with the mental health support system, what was wrong with the current system and what could be done to improve it. It was a bit of a case of  – Where do we start?

Of course there were not a lot of positives to say.  My colleague, Melissa, pointed out that the way the system is structured and the constant barriers that we must confront every day was actually impacting on the mental health of deaf people. I put my hand up here to tell my tale of woe. Tales of woe are my specialty. This was my tale –

“Yesterday I was talking to an official at my work. I was text chatting by Skype trying to resolve an issue for a participant. Suddenly the official typed out – call me on 09816709. I typed back that I was deaf and that it was easier to continue the discussions via Skype text chat. The official did not respond. I prompted her several times. Are you still there I typed, hello – But to no avail, she was gone. I got one of my colleagues to call her. Apparently the official had rung my participant and resolved the matter with her. This was great except that she left me hanging and not knowing what was going on. I told my colleagues what had happened and they all encouraged me to complain. And I just said no – After 30 years I’m done complaining, I’m tired. I don’t expect this from a service that is Australia’s premier disability support system.

And you see a couple of weeks back I was going through depression and the psychologist who got my mental health plan rang me on my phone to set up an appointment.  I just get this number showing on my mobile so I rang it through the relay service and it turned out to be the psychologist wanting to make an appointment. I pointed out to the psychologist that my file said text or email. He acknowledged that it did. He asked me to send him a text  to which he would respond with a time to meet. So I hung up and sent him a text. I never heard from him again. I mean I was depressed and I could have killed myself – What would he care? My point is that these constant negative interactions with a world that won’t adjust make deaf people sick and depressed to a point that it is easier to actually not seek help and remain ill.”

All the consultant could do was shake his head ruefully. A little later he confessed to us all that deaf people have it worse than any one else. He confessed that the barriers that we face to access a system that should be helping us  are the worst of everyone. Well, gee, thanks. If this wasn’t depressing enough my colleague, Melissa, asked him what the Commission would do with the information we had just provided. His answer, in a nutshell, was that he didn’t know.

And this is why I am tired of complaining. I have become so desensitised to this hearing world that constantly shuts me out that I have almost reached a point where I do not care anymore. I have reached a point where I am letting discrimination happen simply because responding to it all the time is making me ill. It’s not just me, it is nearly every deaf and marginalised person in Australia today that faces this. A friend said to me on the weekend that his father had said that the challenges that people with a disability face are good for them. It makes us a resilient mob apparently. Well I tell you what mate, I must be so resilient now that I am almost fucking bullet proof. Of course I am not, it takes its toll.