Finding Joy

Last year when I lost Joy, I wrote about it.  Where’s Joy? The article was written when I was at my lowest. My wife was in America and my boys were out working. It was my birthday and I was all alone. I needed to make sense of this enormous black cloud that was hanging over me so I wrote. It was an awful time.

Where’s Joy? – It is about my journey with depression. My psychologist called it reactive depression triggered by a workplace incident. Indeed it was. I had a horrific boss. She was a bully. She was a gaslighter. Subtly and cruelly she would dig the knife in.

It was an awful time at work. I left on a secondment for six months. It was a successful time too. I was offered an 18 month contract. When I had left my previous workplace my manager had just started. I had my doubts about her then. Especially when she asked me if I would rather go back to my desk and work rather than work with her and a colleague on reports.

You see, she didn’t like to have to adapt her communication. It stifled her style. When she asked me this I must have given her daggers because she physically jumped backwards. In answer to her suggestion I rather coldly replied – “No, I would rather be here, thank you.”

The warning bells should have been acknowledged when she asked a colleague who was unsteady on their feet to move desks. Supposedly because they were an occupational health and safety hazard to others. But I left soon after. When I left, I left a happy workplace. I left a great group of colleagues who I enjoyed working with. Laughs were never far away. I was determined to come back after my six month secondment. Indeed, I even promised a few people that I would. The boss had only been there a few months at that time.

When I left I had my doubts. I didn’t think the manager had the disability smarts. But I try to see the good side of people. Perhaps over time she would learn. I should have known better.

I returned after six months to what I can only describe as a tense and unhappy workplace. I was horrified. At management meetings they spoke about my colleagues with disdain. They called them liars, lazy, unprofessional, trouble makers, not good enough and so on. I will never forget my senior colleague standing in front of me and proclaiming of one young colleague – ” … They hate me, they hate  but I don’t care. They re not good enough, they are lazy.”  It was not a pleasant place to be.

And that manager. She would talk about people who had moved on to other roles. She would talk about them like they were dirt. She would claim they were never good enough and that they would never be welcome back. It was really horrific and negative. On Mondays, when we had these meetings, I would break into a cold sweat. I hated those meetings.

We were performance managing a couple of people. I had them in the meeting room crying. Crying because the manager had phoned them and abused them. Crying because they feared for their futures and their families. Pleading with me to help. I helped as much as I could. I gave them tips on how to manage the situation. Advised them to record every conversation, get in touch with the union, never to go into meetings alone and so on. That is how bad it was.

With performance management, it is the manger that manages it. I would implement strategies. record outcomes, have follow up meetings and measure improvements. I was so concerned about how the manager was handling things that I contacted Human Resources expressing my concerns and sought guidance. I spoke to a colleague about how distressed one of the people who was being performance managed was. They responded – “…They had it coming ..”  This person was just about to lose his job, their future and perhaps even their house. No compassion – Just – THEY HAD IT COMING.

Finally I cracked with the manager, I got angry. I told her she wasn’t being fair and I had something to say. She tugged her ear lobe – at me, a deaf guy – and said – “Listen to me!” That was the last straw. I looked her straight in the eye, while pointedly tapping the table with my middle finger, and said, apparently very loudly – “No – I have listened to you for a long time, now you are going to listen to me.”

A little after that, after some horrendous gaslighting I broke down. I will never forget our last meeting when she mad me sit next to a window, and sat herself next to the door. She was implying I was a threat and would hurt her. I remember telling her she might want to leave the door open, just in case. She was subtle and cruel. I don’t hate many people, but by golly I hate her.

This all happened precisely a year ago last week. The trauma of the time came back to me. I was angry and teary and I was having flashbacks. You know, even when I left she did not let up. She would tell colleagues to unfriend me on Facebook. Warn them to be careful because management would not view them associating with me in good light. One former colleague contacted me recently apologising for not getting in touch. She said she had felt compromised, even a little brainwashed. It is not a time of my life that I look back on with any fondness.

And I hit rockbottom. At first I just wanted to give up and forget. I didn’t want the stress of a Workcover claim. I just wanted to move on. But I found a great counsellor. The counsellor reminded me of my value and what I had to offer. She helped me with my Workcover claim and it was approved. This was vindication to me that what I had experienced was real.

I remember saying to my counsellor that I had let everyone down. By quitting I had put my family at risk. We stood to lose everything. She was having none of it. She said that quitting, knowing the risks, was the bravest thing that I could do. “Gary.” she said, ” … you were bullied, the woman abused you, no-one has to put up with that.”

That was the start of my recovery. The counsellor gave me strategies to stop me ruminating. She said to find something to focus on. Just focus on it and think about it. Think about its shape and colour and where it came from. She told me to allow my mind just to get absorbed with the object. So I started macro-photography. Close ups of flowers, insects and objects. Every day I would take photos and post them on Facebook under the title of POSITIVITY.

Slowly and surely, with the help of Marnie, my boys, my friends and my counsellor I hauled myself out of the hole and began to look for Joy. Slowly and surely I began to feel her presence. She was there, I could feel it but I just could not allow myself to fully accept that she was back.

One day I was waiting to hear if I had been successful with a job that I had applied for. I was convinced that I had missed out. I could feel myself falling back into the hole. I grabbed my camera and I went for a walk. I walked some 200 metres from home and saw a a mother and father with their young child. They were looking up a tree and were very excited. I walked up to them and looked up, this is what I saw ….

There she was. This was Joy. I called her Froggy instead because it is a Tawny Frogmouth. But at that moment, that very moment, I knew I had found Joy again. I didn’t care if I didn’t get the job or not. I looked at Froggy and I sort of knew that this was a message, that everything was going to be OK. And it was, because when I got home my phone confirmed that I had got the job. I have not looked back since.

The pandemic is with us. It is horrible but I know one day it will pass. I am currently separated from my family. They in Victoria, me in South Australia. Borders are closed and we cannot see each other. But it will pass, we will once again be united. Whenever I doubt this I look at Joy in the guise of Froggy. She is now a poster that hangs over my bed.

Life is truly good, testing but good. I was reminded of this by new boss. My new boss  is the epitome of compassion and someone that values others. I knew I was finally back when she said this to me …. And I will end this here … It’s a year on and Joy has been with me for a while … All I can say is – WELCOME BACK, JOY and stay!

Gary you have achieved much since taking up the position. Your own lived experience of being Deaf has raised the consciousness of the staff to what it means to live with a disability. Your advocacy provides a role model for all staff. Our organisation is fortunate that your skill and expertise, both as a disability advocate and skilled practitioner, adds a depth to its profile that has not been there previously.

What a difference a year makes!

Having the Last Word

It’s been an interesting year to say the least. Covid-19 has impacted on us all at so many levels. We have all had to modify our behaviour. Social distancing and hygiene have been paramount. Many of us have been forced to work and study from home. This has brought with it many changes and challenges.

People in general have struggled. They have found the relentless succession of online meetings, training and other learning difficult. They have found connectivity an issue. They have found it hard to gauge emotions and vibes of communication because of the 2D nature and unfamiliarity of constant online communication. Distractions from children, family members and pets, at first an amusement, have become irritating and frustrating. It didn’t take long for the cracks to show.

But what if you have a disability. What if you are deaf and need captioning or interpreting? What if you are blind and cannot see what’s on screen? What if you are autistic and your carefully crafted routine and sensory management is disrupted? If the non-disabled found it hard – Spare a thought for people with a disability, the challenges have been immense.

I am deaf, I can only speak from my own experience.  I am some kind of glutton for punishment. I have actually enjoyed the challenge. I have particularly enjoyed the challenge of using Live Transcribe for nearly all my meetings. Live Transcribe, for those that do not know, is an android based app that provides automatic voice recognition captioning. I basically just place my Samsung tablet on a stand beside my computer and it picks up what people are talking about.

This has been my choice. It has saved heaps of money in captioning and interpreting. However, it is not for everyone. The captioning is surprisingly accurate but gets tripped up by phonetics. Hence, my friend Theresa becomes “the razor” – Razor is her name of choice now. Survey Monkey somehow came out as “Simply Mickey” – It is often hilarious, and I share the errors with my colleagues to their ongoing amusement.

But there is a thing with these online gatherings. I call them gatherings because this encompasses many things – Education, work meetings, Webinairs etc. The thing is, even when access is provided, inclusion is extremely hard. What this means is that the deaf person, and probably others with a disability too, always have the last word.

Having the last word is often seen as a sign of a narcist. For a narcist winning an argument is everything. They are not known to listen, rather they want only to be heard. I often wonder in this new online normal, if this is how non-disabled colleagues view us Deaf or disabled people when we pipe up at the last moment.

As a deaf person who must engage in online discussions several times a day, I have found that the only way to be heard sometimes is to wait for everyone to finish talking. You sometimes see the hint of frustration on colleagues faces at me repeating things that they thought had been resolved. On days when my energy is low, I just cannot be bothered and stay silent.

My responses in meetings can go something along these lines …

  • “ … I am sorry to come in late. I haven’t been able to get a word in because everyone is speaking so fast … ? “ (This is usually followed by lots of sorry Gary, Sorry Gary, Sorry Gary).”

 

  • (Waving frantically at screen.). “ …. Stop, stop, stop – I need to challenge Bob’s assumption that interpreters slow down discussions … “ – No one has ever actually said this, but the reader should get the gist of my frustrations.

 

  • ( Taking a note on my pad) …. “ …. I’m really sorry, Sue said something about 25 minutes ago that was really not correct, I need to take you back and discuss that again … “

 

  • Press raise the hand in Teams – Wait fifteen minutes before someone sees it – Forget what I wanted to say.

 

  • Chair asks if I have anything to add at the end of the meet because I have been very quiet .. “ … Several things actually, do we have an extra half an hour.” (Yes, the sarcasm is dripping -but the frustration is real.)

Couple this with the fact that we sometimes have connectivity issues, audio drop outs and the variable quality of both live and automatic captioning, it’s not always plain sailing. If you thought Zoom fatigue was a thing, be thankful you are not dealing with all of these other variables. I can tell you that at the end of a long day of Zoom meetings I am shot!

Of course, there are strategies that can help:

  • Everyone must speak one at a time.
  • Use the hand raising tool in the platform and police it strictly.
  • Use things like polls so that all can have a say.
  • Be aware that interpreters are pinned. When you share documents, the interpreters sometimes get unpinned. Provide deaf participant with some time to readjust (Just use chat feature and make sure everything is ok before proceeding.)
  • If captions drop out, connectivity interferes with access to interpreters or captioners etc – Stop the meeting. This may sound harsh but to continue is to undervalue the input of the deaf person.
  • Be a strict chair. Consider turn taking. For example, ask a question and provide people with a chance to respond equally, one at a time. Close gates on people that talk over others, stop the meeting when people are all talking at once. Open the gate for people that may struggle to get involved. All these things can help make a meeting more inclusive

I and other deaf people really don’t want to have the last word. We really want to contribute to the whole process. Often, I and other participants like me, have valuable ideas to contribute that can make processes and projects better and more efficient. For this to happen we all need to be fully involved so we and everyone can benefit. Inclusion should be the buzz word and it is very different from access!

Gotta go, Zoom is calling!

Kate


I worked in the NDIS as a Senior Local Area Coordinator and Senior Planner for almost four years. By and large I loved my time there. I loved meeting people with a disability and assisting them to develop the best possible plans that they could. People with a disability and their families were why I turned up every day. My colleagues, The LACs, were also a joy to work with. I loved mentoring them and assisting them to understand all things disability. The management, well I’ll say nothing because this is a positive post – But BOOOOO HISSS to many of them. That said, many of the management were brilliant too and bent over backwards to make things happen.

I believe in the NDIS. I think that when it gets it right, it’s brilliant. Sadly, outcomes upcan be very inconsistent. Skill and knowledge levels across the NDIS and LAC organisations are also extremely variable. This leads to many plans being a dogs breakfast. Even now, and I am not working in the field, I get contacted regularly by people with a disability for advice and assistance to develop or challenge their plans. I got myself a six pack from Bevo recently just to prepare him for his first NDIS meet. Call it a perk because I don’t get paid for it. Still, I get a great deal of satisfaction assisting these people as best I can.

Over the next couple of weeks I intend to share some stories of the good things that happen in the NDIS for participants with whom I worked. I was very privileged to have worked with them. I spent time in their homes sometimes They shared some of their most personal information with me. I was always struck by how humble they were. They always, without fail, met me half way with my communication needs. They often made me feel ten feet tall.

Today I want to talk about Kate. It is not her real name. Kate has a genetic condition that impacts on her muscle strength, coordination and cognitive abilities. She has a sister who has the same condition. She was my second ever NDIS participant. I rang her mother through the National Relay Service to set up an appointment. Mum suggested that we meet over Facebook Messenger so that we could type to each other without the need of a third person. I pointed out that this probably had some privacy issues around it. Mum didn’t care and that’s how we did the plan, through Facebook Messenger no less. (Mum’s choice mind you, so get back in your box all ye nae sayers.)

I absolutely loved the mum. She was cheeky and funny. She loved her daughters to death. We developed a plan for Kate that saw some support through a support worker so she could participate in swimming and other things. The rationale behind this was that having two children with a disability sometimes made it very hard for the parents to support them properly. This support was approved. Surprisingly, because NDIS are big on parental responsibility.

But you know what? Mum never used it. She said she felt awful at the thought of not being there for her daughter. She said it was her job and she didn’t want anyone else doing it. At review time she removed all external support for community participation and focused fully on capacity building. Speech, physiotherapy, occupational therapy and that sort of stuff. This is common. So many family members refuse support from an outside provider, simply because they see it as their role. No amount of persuasive argument about the need for a break sometimes could change their mind. I was always humbled by this attitude. That’s why I get so angry when people say that there is too much of a sense of entitlement in Australia today. It just isn’t the case most of the time.

But the big thing for Kate was a bike. Her family loved bike riding. she wanted to ride with them. She wanted a specially adapted bike so that she could pedal a bike despite her low muscle strength. I made a few enquiries and found a company that designed bikes just for that. To me this is what the NDIS is all about.  People in the NDIS love to wax lyrical about  “An Ordinary Life” – (No vomiting please!) What is more ordinary than a child riding a bike.

I discussed this with the NDIS. The person I discussed it with said NO! Bikes, they said, were parental responsibility. I argued that this was certainly the case but that most people didn’t have to pay $2 500 for their kid’s bike. I argued that it was surely the NDIS role to assist to pay for this extra cost to modify a bike. The NDIS person was having none of it.

As I do, I completely ignored the NDIS advice and put it in the plan. It was approved, subject to assessment and quote. This is where the long journey to get Kate a bike began. The assessment and quote were dutifully completed and submitted. But the NDIS refused to approve it. They said it was parental responsibility. A complete Cockwomble of a decision.

By the time of Kate’s first scheduled review I was no longer her LAC. Being a Senior LAC meant that the new LACs that were recruited took over some of my caseload. I remember just before Kate went to her new LAC her mum came in to the office to give me cake and Tim Tams. Kate was a really great kid. I was really sad that I hadn’t been able to get the bike over the line. I encouraged Kate’s mum to keep trying and put it in her new plan.

The second plan came and went and still the bike was not approved. There are people within the NDIS who are, frankly, heartless. They have no idea of the principles of the NDIS or of how the NDIS can facilitate community and family participation simply by approving simple things like a modified bike. It is absolutely the NDIS responsibility to fund these sorts of modifications. But no, they were adamant, it was parental responsibility.

So entering into the third plan mum decided she needed a more personable LAC and requested that I do the review. Of course, I was more than happy to do that. The previous LAC had done nothing wrong. She developed a great plan, added the bike again but it was refused.

I was determined to get that bike. Mum was happy to keep trying. She was just grateful for the therapy hours that she was getting. But that bike, I wasn’t giving up and neither was mum. I looked at the notes. And you know what? – The NDIS were saying that the bike was refused because it was parental responsibility AND that it had no therapeutic value to Kate. I was flabbergasted. Apart from confidence, fitness, coordination and muscle strength – no therapeutic value. How short-sighted could they be?

I set about getting therapist reports to show how bike riding was going to benefit Kate in so many ways. Build confidence, help with participation, build muscle strength etc. I told mum to get the physiotherapist to write a report outlining how the bike was going to help with coordination and maintain Kate’s muscle strength. My LAC colleagues insisted that it was not going to happen. They said the NDIS would not approve it. But they did. YES they did. You should have seen my fist pump when they did.

Kate and her mum had to jump through hoops and it only took three years to do it, but it happened! Shortly after the approval I started a six month stint with the NDIA as a Senior Planner. One day, on Christmas Eve no less, I received an email from Kate’s mum. Attached to the email was a photo of a proud Kate sitting on her bike. The smile on her face was priceless.

A little tear of joy escaped the corner of my eye, as it does now as I write this. Just a small thing that the NDIS can do to make a difference. An adapted bike. It is my favourite memory of my time in the NDIS. These are the things that I miss, just making that little difference in a persons life!

 

The Ogres of the Disability Sector!

    Image shows an Ogre, grey and with fangs and pointy ear. He is dressed in a business suit.

I have been in the disability sector for over 30 years. As a deaf professional I have pretty much seen it all. I have been lucky, most of my managers have been great. But, there is always someone, somewhere who screws things up. There are people that simply should not be anywhere near disability, or any group with a disadvantage for that matter. Yet, somehow they make it all the way to the very top. These are the Ogres of the Disability Sector.

I once was refused interpreters by an organisation that catered for disability.  They were doing a training course on counselling children with language issues. Counselling by play they called it. So I asked for interpreters and the boss of the training company told me that they would not provide. It was not financially viable they said. They offered me a free registration if I could arrange my own interpreting. I pointed out that the registration fee was actually more than what it would cost to pay for the interpreters. They still refused. Said the boss, ” Come on Gary. if people in wheelchairs bring their own wheelchair, surely you can bring your own interpreter?”  Yes, that happened. The old joke of burying their interpreter with the Deaf person when they die rings true.

I got a six month contract as a Senior Planner with the NDIA. I was approached by Hays Recruitment to ask if I would be interested. I was interviewed and won the contractor job on merit. I started work with the NDIA and did the mandatory training. To their credit, the NDIA arranged interpreting for this. After four weeks I commenced my job proper. Suddenly the NDIA would not provide interpreting. They argued that it was the job of Hays to pay for this because, technically, contractors are employed by them. Hays didn’t want to pay for the interpreters either. I even applied for interpreting via JobAccess and asked the NDIA to confirm my employment. They told me to get Hays to do it. This went on for eight weeks or so. In that time I, a Senior Planner, was sat at my desk waiting for the management of Hays and the NDIA to sign the form so that I could get interpreters or captioning to do the job.

Neither of them would sign it. So I couldn’t meet with clients. I was sat at my desk for eight weeks doing virtually nothing. I completed every item of the NDIA online training. I am sure I am still the only person in the world to have done so. Eventually the manager approached me and asked me to vet a few plans to make sure they met requirements. ” I have every confidence that you can do this, Gary”, said the manager. Well, I would bloody hope so given that I was a Senior Planner. I was livid and as the manager walked away I signed something non to complimentary to her back.

Eventually the NDIA offered me an 18 month contract so that I became their employee. To be fair, from then on they provided for all my needs. But still the episode left a foul taste in my mouth. How could management let this happen? How could the NDIA put me in the middle of toing and froing over the issue of access?  IT’S THE NDIA, surely disability should be a priority? But it wasn’t. I do not care who was responsible, management dealing with the biggest disability program in Australia needed to do better than this.

I also worked for a local council. My responsibility was access and inclusion. I had a heavy focus on making things like grant proposals requiring applicants to outline their disability access plan. I was determined to ensure the council emergency response considered disability needs. The latter included things like ensuring town hall type meetings were held in accessible buildings, that interpreters be provided, plain English versions developed, videos captioned and so on. I was really powerless and had to convince respective directors and managers to make these changes.

And you know they would promise the Earth and not deliver. Now, being deaf I don’t use the phone, I communicate by email or text. On a regular basis I would remind these people of their commitments and ask for action.

Do you know what happened? Not only did they not do as promised they refused to reply to emails. I brought this up with my manager. I said that they had stopped communicating and that they would not follow through with their commitments. They were basically giving the middle finger to disability access. I will never forget being told by the emergency services manager that disability was not their remit and that the neighbours were responsible to help and ensure their neighbours with a disability were supported. No, I do not jest, nor do I exaggerate.

My managers response to this was to tell me that when I had a meeting and an Auslan interpreter was present I should go around the building with the interpreter after the meeting and try and grab the offenders. I pointed out that this was not feasible because after meetings interpreters had other jobs to go to. She said she would write an article in the employee’s newsletter to let staff know I was deaf and make them aware of my needs. I got quite angry. I said, “NO! these people have to adjust too. They have to meet me half way. Not following through on promises and not responding to emails is simply unprofessional.” 

Naturally, nothing happened. Nothing changed. It was, of course, my fault. My manager tried to blame me. I asked what I was supposed to do if these offending people had simply stopped communicating and following through on their commitments. She basically accused me of exaggerating and lying. That was until forwarded her no fewer than 67 unanswered emails, just concerning ONE manager! It was a tough time and it made me quite ill.

Oh, and there was the lovely manager who asked me to go back to my desk and, “do more important things”, because they didn’t want to adjust their communication style. I was cramping their style you see. And then when I was challenging them on important staff issues they tugged their ear lobe and told me to listen. I probably didn’t help myself by telling them that I had listened to them for the last hour and a half and now it was their turn to listen to me. It should really come as no surprise that this same manager made a person with a physical disability move because they considered them an occupational health and safety risk. They might fall on someone you see. A real Ogre that one.

Before writing this I asked colleagues with a disability to share with me their own experiences. There were some shockers;

  • The deaf man told to get a mental health plan for reporting someone who secretly recorded a meeting with staff. Instead of acting on this appallingly unethical behaviour of the said staff member they turned it back on him, implied that he was the problem and that he should fix himself up through a psychologist.
  •  In the 90’s, the deaf person working for a deaf organisation who was questioned by the CEO about their need for interpreters because they had indicated in their interview that they were a good lipreader and mostly coped by lipreading.
  • The deaf professional told by her manager, who could barley finger spell, that her signing skills were not up to scratch. (This was very recent.)
  • The Deaf professional told to leave a planning session because the meeting would be fast paced and she would hold them up and not be able to follow.
  • The manager who asked a clinical staff member to look up some mental health information on a student, with out permission or consent. This was reported to HR who refused to act.
  • The manager who chased an in pain staff member to her car with an implied threat. Apparently, associating with certain people on social media would be bad for their prospects.

These anecdotes are but a fraction of what people have sent to me. A large percentage of them happened very recently and all were targeted at people with a disability.

I have long stated that people who work in the disability sector need to have experience in disability. They need to be culturally sensitive to the needs of people with a disability. Most importantly they need to demonstrate that they have the right attitude and knowledge. I have pushed this view often in the disability sector only to be told that disability can be taught and can be learnt on the job.

This is why we see within the NDIA an assortment of heavy handed bureaucrats. We see within LAC positions people who were previously policemen and even bank clerks and who get the job because they have people or IT skills. Bugger the fact that they have minimal knowledge of disability.  This is why many NDIS plans end up being a dogs breakfast. Too many people simply do not know what they are doing!

Yup there are Ogres working in management in the disability sector and they are doing enormous damage. Usually it is people with a disability who are targeted unfairly. There are simply not enough people with a disability in management roles and far too many ableist managers who do not know what they are doing. It is widespread and causing immense damage.

It is not just indirect discrimination, it is often outright abuse. Like the elephant in the room, the Ogres in the disability sector need to be addressed!

 

 

 

Infantalising the Deaf Community

The recent Rebuttal, What About Me, has caused some controversy. The article aimed to highlight some of the reasons that the Deaf community were frustrated with the media portrayals of Auslan. Many could relate to the article while many others saw the article as an attack on interpreters and the Deaf community establishment. It was neither of these things. So I thought to expand a little more on the themes in this article.

In recent times when interpreters have become prominent on the television, for whatever reason, the interpreter becomes a bit of a celebrity. During the Queensland floods the interpreter became Sign Man. The hearing populace had enormous fun taking the piss at what they saw his exaggerated facial expressions and movements. During the Bushfires the bearded fellow, who we all love, was everywhere. In Perth, the interpreter became the centre of everything. Interpreting for Fat Cat and teaching the Premier of Western Australia some impromptu Easter signs. It was a bit cringeworthy watching the Premier hop around like a bunny. The intent, however, was pure. Pity the poor interpreter who was forced to comply. She could not very well refuse with all eyes upon her.

Let’s be clear, I and the Deaf community, do not begrudge the interpreters the exposure they’re getting. They are a valuable resource and much needed by the Deaf and hearing communities alike. As many have pointed out, many of these interpreters have been part of the Deaf community all of their lives. Many have invested a great deal of time and money to become the very best interpreter that they can be. Studying to be an interpreter is not cheap.

We are all very aware of these things and are thankful that interpreters are there. They are the bridge between hearing and the Deaf communities. Interpreters ensure inclusion and equality. They ensure, and this is not said enough, that Australia can get the benefit of the many Deaf people who have skills and attributes to benefit Australia.

In years gone by Deaf people were encouraged to do trades or simple clerical jobs. They were not encouraged to become professionals. I became a cane furniture worker and a cabinet maker before I set on the path to become a teacher, which later changed to becoming a social worker. I wasn’t encouraged to consider anything beyond manual trades. Communication was thought to be too hard. Not being able too talk on the phone meant it was impossible, apparently, to be employed in professional areas.

That attitude was wrong then, and it is wrong now. Even more so today when there is a plethora of technology. If we really wanted, we probably would never have make another voice call ever again. Email, live text chat, messenger, Teams, Zoom, SMS etc arguably are all that we need. For example, the last three cars that I have bought were arranged entirely online. No phone calls required. I’ve just arranged a move to Adelaide entirely by email and online purchasing. Not one phone call was needed. I know this horrifies hearing people, not talking, but it’s possible.

But I digress; my point is that we have an enormous range of Deaf talent out there. Lawyers, social workers, bankers, nurses, doctors, mechanics, teachers, scientist, artist and so on and so on. Arguably, without interpreters Australia, indeed the world, would not receive the benefit of these talented people. Interpreters are there for Deaf and hearing alike. They bridge the gap, ensure inclusion and ensure the hearing world does not miss out on all of the diverse talent and skills that exist among Deaf people.

That said, interpreters are not heroes. Nor, I am sure, do they want to be. We would not all fall over without them. We would find a way to communicate. The relationship between interpreters and the users (Deaf and hearing) is reciprocal. In this sense, each person in the relationship is there for a reason.

In simple cold and hard business terms, without the deaf and hearing people in need of the interpreter, the interpreters would not have a job. They have a profession that provides them with an income, status and a means to pay their bills because there is a demand for it. I know interpreters are not just in it for the money, but let us be honest, if it didn’t pay, we would have fewer interpreters around.

It’s a not a job for kind hearted volunteers either. There are issues of life and death that interpreters deal with everyday. Issues of money. Issues of the legal system. Issues around personal relationships and so on. We need skilled and committed interpreters. That’s why we pay them good money, they do a tough and vital job. Sure, many do pro-bono work and that’s great. But the job that they do is intense and requires great skill. It is also very stressful, I do not envy them. Nor do I protest at them being paid a fair wage in line with their skills, it’s a vitally important job. I have no time for people who say that interpreters are paid too much, that is poppycock.

That’s why both Deaf and hearing people need interpreters. Doctors need interpreters so that Deaf people follow their advice and prescriptions properly and do not overdose. Banks need interpreters so that Deaf people understand their contracts. Counsellors need interpreters so that marriages are maintained and mental health services provided. Employers need interpreters so that they get the very best out of their Deaf employees and visa versa.

Deaf people need interpreters so that they are employed and can do a diverse range of jobs. Deaf people need interpreters so that they can be included and valued members of the wider community. It is a reciprocal and serious relationship that the three stakeholders have with each other. Reciprocal and equal.

The Deaf community want to be that equal partner in the relationship. They don’t want to just be seen as the helped. Deaf community members want to be seen and valued and not seen as those poor people that need to be saved by those super interpreters. They want to be taken seriously as individuals, contributors and professionals. This is why there are frustrated. ( I do not believe that there is one interpreter that sees themselves as a super interpreter. I speak here only of the themes portrayed through the media. This is not something that they have much control over.)

Arguably, the Deaf community are also being infantilised. Sure, I get it that there are Deaf kids that will love to see interpreters hopping around like bunnies, but when this is largely all that is portrayed on the mainstream media, along with the theme of being helped, the wider deaf community feel devalued, belittled and even further marginalised.

This is further compounded by the fact that there is always the AWWWWWW factor in play. It’s great that Emma, the yellow Wiggle, incorporates Auslan into her performances. But I can tell you my hearing colleagues, as one almost, say to me, ” …Isn’t that beautiful ..” They come and get me and they say “Gaz, have you seen this!! – It’s beautiful.” It’s either that or they ask me the signs for swear words.

When the Deaf community see hearing people speaking for them and owning their language, without much acknowledgement the Deaf community, they feel invisible. The ones protesting about the media portrayal of interpreters and the widespread attention given to people like Emma, the yellow Wiggle, just want to be taken seriously. They want Auslan to be taken seriously and to retain a semblance of ownership of Auslan. ( It is true, no-one really owns a language, but when Auslan is constantly infantilised and seen as a tool of help and not identity, it hurts.)

That is what the protest is about. It is really hard to speak up without being seen as taking potshots at interpreters. It is really hard to speak up without being seen as miserable bugger for protesting about Emma and her use of Auslan. But, there are some brave souls that have chosen to do so.

For their trouble many of them are being told to shut up. They are being told to stop being negative and to be more positive. Well, when you are marginalised and made invisible by well meaning media who portray you as needing help or when you have your language infantilised by well meaning hearing people who think they are doing you a favour, its a bit hard to be positive sometimes.

All these Deaf community members want is to be seen as equal and to be taken seriously. They also want Auslan to be taken seriously and not solely seen as a means of entertaining the hearing world. That isn’t too much to ask, is it?

What About Me!??

Gavin Balharie was interviewed by the Guardian in a brilliant piece that highlighted why Deaf people needed to be remembered in times of crisis. He told the story about being on holiday with his Deaf wife and young hearing daughter.  When the bushfires began to approach they had no idea what to do. He and his family didn’t know whether to stay or go. They could see and smell the fires but had no idea as to just how severe or dangerous that they were. Balharie became desperate and, “…recorded the local broadcast on his phone and managed to find a translator to send it to. When they got the video back 30 minutes later, they knew straight away they had to get out of there.”  It was only when he received the information in Auslan that he realised that kind of danger that they were in.

I believe that Gavin and his family eventually got back to Victoria safely, basically driving the opposite direction of the fires and coming home via Canberra. I could be wrong but the point is, but for his interpreter friend who provided a video transcript in Auslan of the recording, Gavin and his family would not have known what to do. They would have been in greater danger than they actually were.

If you are hearing you have any number of outlets to receive information. The car radio is one. Social media is another. You may be in the pub when the news comes on and you would hear it there. Shopping centres have televisions on as well. What this means is that a hearing person would be hard pressed to miss vital information. Not so if you are deaf.

This is part of the reason why members of the Deaf community, just your basic grassroots members mind you, set up the Facebook Page, Auslan Media Access. This was basically a page that aimed to highlight where announcements were not accessible. Members of the page would post on Facebook any announcements about the fires that were on television or social media. They would highlight where Auslan interpreters or captioning were not provided. They even made an impromptu video, Can You See the Interpreter, which you can see below.

Members of the Auslan Media Access page posted in droves. People emailed television stations and their government representatives. Slowly but surely interpreters began to appear on screen regularly. Sometimes they would be there but the camera man would not frame them in. In a relatively short space of time the media and governments got the message and interpreters became part of every Australians life for critical and important announcements. First for the bushfires and then for the COVID-19 situation.

It was a momentous achievement. It was achieved through skilful campaigning and very quickly. It even got to the point where broadcasts of the news on ABC would have Auslan translations as well. The people concerned with this brilliant advance in accessibility need to take a bow. That it was achieved in such a short space of time is without precedent.

Of course, with this increased exposure came with it a fascination about Auslan.  Mark McGowan, the premier of Western Australia, played it for all it was worth. He made an announcement about  how much he had relied on interpreters and posted it on his Facebook page. At Easter he got the interpreter to teach him some Easter signs. Watch it below:

The interpreter actually became a bit of a celebrity. I have a vague memory of her being filmed with Fat Cat, who apparently still exists over in Western Australia. So after years of relative obscurity suddenly Auslan was everywhere.

One would have thought that the Deaf community would rejoice! No they didn’t! Some of them actually got quite angry. They became angry because their language, the centre of their identity, suddenly became the subject of everyones fun. Suddenly, Deaf people became invisible. This is a paradox considering Auslan seemed to be virtually everywhere.

So instead of celebrating the brilliant achievement of getting Auslan Interpreters on television and social media for all critical government announcements, the Deaf community got angry! They are rightly asking, What About Me???

You see, suddenly Deaf people became objects of pity that needed help. The beauty, the validity and the cultural eminence of Auslan was rarely discussed. I am sorry, but in trying to bring attention to Auslan what happened was that it became belittled. It became a welfare object. Providing Auslan helped the poor Deaf people. Watch the video below. The title says it all.

I feel for the interpreter. She is saying all the right things. She acknowledges that Auslan is her first language and that of her Deaf parents. She is highlighting the critical need to access information. But the media turn it into a heart warming help story. This is achieved just by the title and the reporters painful attempt at the end to sign WASH YOUR HANDS. But the worst thing is that there is not a Deaf person in sight. They are the helped, out of mind and out of sight.

This is not the first time that this has happened. I recall that the interpreter who was prominent in the Queensland floods became a celebrity as well. He became known as Sign Man. I think the issue this time is that the Deaf community are feeling that they are being ignored, or worse turned into people that require saving. Everyone seems to be getting credit at their expense. This has become more frequent in recent times due to the exposure given to Auslan by the Yellow Wiggle and Deaf Australia ambassador Andy Dexterity. Some say the exposure is good, others say it is the wrong type of exposure and Deaf people should be the ones who people are remembering and not the hearing performers.

The Deaf community are taking particular offence at hearing people profiting and getting credit at their expense. They feel that these hearing people are profiting from the Deaf community with not much acknowledgement to Deaf people. In Dexterity’s case they feel that he has become a self appointed spokesperson and worse, the Auslan that he uses is often not grammatically correct. That he has given TED talks on the topic further rubs salt in the wound.

I won’t get into the linguistics of it all, but I certainly feel that Deaf people are becoming invisible. I certainly feel that the image being portrayed is that Deaf people are in need of help, and by giving this help they are being saved. The image that we are active and contributing members of our society is lost. That’s why I love the story by the Guardian about Gavin Balharie. It is a Deaf person, a Deaf professional, a clearly talented and skilled person who is Deaf and telling the story. It is positive and we need far more of this and less of interpreters bopping around like bunnies. ( With apologies to the said interpreter, I realise that she was probably placed on the spot.)

But, having said all of this I wish the Deaf people concerned could take a moment from being angry to breath and celebrate what they have just achieved. Through the work of some grassroots Deaf people who set up a Facebook Page and then actively coordinated a campaign to get interpreters on screen for important announcements, thousands are benefitting!

In a few short months virtually every announcement has an Auslan interpreter on screen and in frame. No longer do the media cut the interpreter off because they are a “distraction”. The need and importance of the interpreter has been understood, even if it often does not always feel this way.

That was and is a momentous achievement. Take time to celebrate that. You have all earned it!

Footnote: There are many that say interpreters are better and more easily understood than captioning. I digress. One must remember that 95% or more of people who are deaf  (Not Deaf) do not sign. Their need to access information is vitally important. That’s why televisions in public places need to have the captions turned on and all social media postings need to be captioned. These deaf people that do not sign also need to be safe. That the captioning is sometimes of questionable quality is something that also needs to be addressed. Auslan interpreters and captioning, they must go hand in hand.

It’s a Deaf, Deaf World – Zoom!

Covid-19. There, I said it. It’s like we have not heard enough of it. I am betting that you, like me, are one of those people who are constantly scanning the news via newspaper apps and social media. Looking on in horror as America self destructs. Looking on in hope as cases in Australia continue to decline. Hoping, just hoping that the light at the end of the tunnel will lead to the lift of these damn restrictions. Dreaming for the day we can once again sit in a cafe and not feel guilty for having to pass someone by at arms length in the Supermarket.

Around the world countries have locked down. People are staying home. These lock downs are having a devastating impact. Both economically and socially. Leaving the economic situation aside, I have been fascinated about how the hearing world has responded to social isolation and having to adapt to such.

For us Deafies this is not new. Most of us have hearing families. We have all had to endure those frustrating gatherings where we are there in person but not there really. If you get my gist. We have all endured being the one deaf in the village. Be it at work, education or socially. It is often not fun.

It is tiring. It is often soul destroying. I know that mobile phones have pretty much ended the dinner table conversation for many. But, even with mobile phones people still converse. They talk under their breath about the meme that they have just seen or how Sheryl is upset because no-one liked her photo of yesterday’s dinner. It’s probably worse for people who are deaf because heads are down and people are muttering and distracted. There are very few facial cues too. Often all that the deaf person can do is immerse themselves in their own phone.

That is the lousy thing about technology. As much as it can bring us together, it can also isolate. In years gone by the dinner table was the place where people caught up. They talked about work, the days events, the news, what they heard on the radio and the coming events of the week.

These conversations are largely inaccessible to the deaf family member. It is the same at birthdays, the same at Christmas and other family type events like weddings and funerals. It is common that one person, often the mother, will provide little snippets of what is going on. Despite this, these gatherings can be lonely events. They are often stressful and demoralising. It is not for nothing many Deafies will go out of their way to avoid them.

Yes, its depressing. That is what often happens as the result of this wide spread isolation. Depression and low feelings of self worth. It is not for nothing data abounds that shows Deafies have a higher incidence of mental health conditions than the wider population. It is also not for nothing that we are often tired and exhausted. This is Deaf Fatigue. It is a real thing.

The medical term for Deaf Fatigue is Concentration Fatigue. In simple terms this is when someone has been concentrating hard for so long that they are mentally exhausted. They are often exhausted to the point that they are extremely tired and cannot function or work properly, if at all. In this age of the pandemic, I would hazard to say that Deaf Fatigue is pandemic across the world.

Khaflia (hearmeoutcc.com), explains that Deaf Fatigue eventuates because, ” The average deaf person will have to use various attention mechanisms in order to interpret and eventually understand what is said because they have to pay more attention than a person with typical hearing levels because they have to use up more of their brains’ resources when listening and lipreading.”

Deafies know this. At dinner we are catching snippets of conversation and trying to work out what people are saying with less than half of the information that our hearing family members have.  At work we are lipreading people all the time. It can be a colleague seeking assistance or providing information. It can be in a meeting where communication is supported through interpreters. We get the Auslan, translate it to an English equivalent and this means that we are often a few seconds behind everyone else. To contribute and be a valued member of a work team we have to be quick. We often have to stop people mid-sentence to express our views. Repeatedly, we must stop people all talking at once. Sometimes we are so behind and lost that we have to get them to repeat.

More often the Deafie relies totally on lipreading. Sometimes they combine a little bit of residual hearing with lipreading. Some can hear quite a bit, but to make sure they catch everything they have to concentrate to the max. Some are using live captions and, depending on the skill of the captioner, they often get less information than their hearing peers. Consequently, Deafies are constantly filling in the gaps.

These days I am using Live Transcribe. Great technology that is voice to text. I can use it for face to face or even for online meetings. It is surprisingly accurate. But it is phonetic and it can come up with some bizarre phonetic interpretations of what people say. I am still not sure what the supple nipple was referring to.

In the Covid-19 environment I am using it a lot with great success. But, yes it is tiring. To get the feel of a meeting over Zoom I must alternate from the tablet screen to my computer screen. To contribute I often have to talk over people because I cannot hear them. If I say nothing, important considerations might be overlooked. This means that I have to be assertive. I wave frantically at the screen or simply unmute myself and ask to speak. The looks of people when they are cut off can be quite comical. Thankfully, I have an empathetic team who understand my needs.

The point is that it is tiring. It takes a fair bit of skill deciphering what people are saying when you have less information to follow a conversation. It takes assertiveness, alertness and supreme concentration. I am generally known for my humour and adaptability. BUT, make no mistake, it’s draining. At the end of the meeting I am often very, very tired. This is something many Deafies understand but hearing people understand less so.

So, it was with interest this week I read about the relatively new phenomenon of Zoom Fatigue. I even had a little chuckle, as I am sure did many Deafies the world over.

Apparently, this new phenomena of video chats at work and to socialise is tiring people out. The newness of it, the fear of drop outs, the unnaturalness of the sound, the freezing screens and the like are causing tiredness and stress. Video chat, even if you can hear and see fully, is wearing people out.

The blog site, Remote Control, recently published an article on this very topic. The article discusses a number of reasons why people are finding video chats tiring; including:

  1. Being on a video call requires more focus than a face-to-face chat.
  2. Silence creates a natural rhythm in a real-life conversation. However, when it happens in a video call, you became anxious about the technology.” It also makes people uncomfortable.
  3. German academics showed that delays on phone or conferencing systems shaped our views of people negatively: even delays of 1.2 seconds made people perceive the responder as less friendly or focused.
  4. When you’re on a video conference, you know everybody’s looking at you; you are on stage, so there comes the social pressure and feeling like you need to perform.

I have deliberately chosen these points. I have chosen them because they virtually describe me as a deaf person to a tee. I mean obviously, for point 1, Deafies are required to focus way more than their hearing peers to converse. This is probably more so over Zoom.

Silence, all Deafies know this one. We have a paranoia of not knowing who is talking or even if they are talking. This causes us great anxiety.

Delays!! Well, we are used to that. We are often two to three seconds behind any conversation through the use of captioning or interpreting. If we rely on lipreading we miss information too. Particularly when people talk out of our view span. The need to ask people to repeat is embarrassing and causes further delays.

The German academics view is particularly interesting. Why? Well, because Deafies are often very quiet in meetings. This is because they are so fully focused and a little bit behind. I have lost count of the number of times someone has said to me that I needed to be more involved or that I was not part of the team. I am not kidding, this happens. The silence of Deafies is usually because it is very hard to get involved in a world focused on hearing privilege.

The final one, all Deafies know this. Being in a room with a third person, be it a captioner or interpreter, means everyone is looking at you. Interrupting people mid-sentence causes acute embarrassment. The feeling of the need to be part of the group, despite all the barriers, is ever present.

Zoom Fatigue, it’s real. I get it and do not want to underplay it. In this Covid-19 environment people have had to adapt really quickly and they have. But, they are feeling the strain off this new world and the pressures it brings. It is just uncanny how similar it is to the everyday deaf experience.

Here is hoping that at the end of all this people may just understand the challenges of us Deafies a little bit better. Empathy is a great leveller.

Finally, a big thank you to all the essential workers that have kept us safe and ticking over. The doctors, police, nurses, social workers, shop workers waste removalist and the like .. Without them where would we be?

Stay safe people.

A Success Story – Hallelujah

The poor old NDIS. It comes in for some stick. A lot of it deserved. A lot of it because it is understaffed and under resourced. Even more of it because it has an IT system that is not fit for purpose. Sadly, a lot of it because many within are just not right for the job.

Recently I wrote a scathing piece about a shocking plan received by a friend off mine. She is deaf with a cochlear implant. She received a paltry $300 for low cost equipment, nothing for community participation by way of communication support, $3000 for assessments, presumably to work out how to spend her $300. A quarter of her plan was allocated to pay a plan manager. She received $100 for her Hearing Services Voucher. It was one of the more bizarre and worthless plans I have seen.

A meeting was called with her LAC to find out what had transpired. The LAC then just laid the blame solely at then feet of the NDIS delegate that had approved the plan. Usually LAC and delegate have a plan alignment meeting (PAM) and discuss what has been recommended by the LAC. In this case it seems both LAC and delegate had no clue. But the LAC washed her hands of it. She laid the blame solely with the delegate.

She advised us to review. Sent the form to be filled in and basically went back to LAC land. Likely some other poor soul became the victim of her ineptitude. I knew that dealing with her was a waste of time. I instructed my friend to send the NDIS a letter appointing me as her advocate.

I set about compiling an official complaint outlining exactly how my friends plan should be structured. Through contacts I garnered who the delegate was, who her team leader was and who the LACs team leader was. I prepared a complaint and I outlined just how this plan should be structured. It was a modest plan that came to around $17 000. It included 120 hours of Aslan interpreting/Captioning for community participation, $1500 in low cost equipment and 10 hours of assessments to identify low cost technology that would benefit my friend. In addition to this we asked for 10 hours of Auslan Tuition to kick start the learning my friends husband and his family so that my friend would be less isolated within family gatherings. The mandatory Hearing Service voucher was also included.

The email went to LAC and her team leader, delegate and her team leader and the NDIS feedback email. I asked for a response within two working days. I heard nothing from the LAC or her team leader, nothing from delegate or her team leader but the feedback line responded on the third day. I was quite impressed because under the legislation they have 21 days to respond. That’s my understanding anyway.

BUT – Even though the email clearly said deaf, don’t call, please email; they called. I called back through the NRS and asked them to please email. They did within the hour. They promised to put in the review for my friend so that she didn’t have to mess about with paperwork. I asked if we could do what is known as an agency initiated review because of the appalling errors in the plan. For example the delegate apparently denied all access to Auslan interpreting or captioning because, “.. participant has a cochlear implant and can hear.”

I have to say the complaints person was brilliant. She tried to get an agency initiated review but couldn’t. She promised me to keep the complaint open and try to get the review completed as soon as possible. Woe and betide, she was as good as her word. Within a week the NDIS Reviews team contacted my friend about the review. BUT – Yes they called.

So anyway my friend gave me the number. I called back through the National Relay Service and said – Can you please email. So they did. They proposed a new plan that was still woefully inadequate. It had only about 30 hours of interpreting. So I emailed the plan structure to them. Within 24 hours all that I has asked for on behalf of my friend was approved. The whole process took about three weeks. I have to say, apart from phoning, the complaints team and the National Review Team were brilliant.

I emailed them back and thanked them for their professionalism. I asked if they could arrange a proper implementation for my friend so she could have her plan activated, understand the portal, how to access it through My Gov, understand how to book service and prepare service agreements. On my friends behalf they contacted the LAC organisation and asked them to arrange the implementation.

The LAC organisation did, and they emailed too. Hallelujah!  They arranged an interpreter too. Via Skype because of the social isolation going on. But, sadly the implementation was appalling. My friend wasn’t provided an activation code. No instructions for the portal or My Gov were given. The information about finding or booking services was not provided. Apparently the LAC just read out the plan.

So another complaint letter. I requested the LAC be removed, a new LAC be appointed, the implementation be redone, and properly. I sent this to the complaints people, the National Review Team, the LAC and her team leader. Within 24 hours it seems the complaints team had told the partnership organisation to do the job properly. The LAC was removed and a new LAC was appointed. Thankfully the new LAC knew what they were doing and everything my friend needed was provided. As my friend said to me, “It’s sad it had to happen that way.”

But the important thing is that the whole thing was dealt with quickly and properly. The NDIS quickly realised that the plan was a shocker and set about rectifying things. They did all that they promised and ensured that my friend got a plan that she needed. A plan that could make a difference to her life.

It is certainly true that it should not have happened like this in the first place. Sadly, there is some dross within both LAC partner organisations and the NDIA itself. Many of them should not be in the role and do not understand disability. Many are just lazy, make assumptions and do not use the considerable resources and support within the NDIA to make the right decision. Simple things like consulting subject matter experts and the operational guidelines to ensure a plan that meets needs. Simple things like familiarising oneself with certain disabilities so that one at least knows how the disability may impact. Simple things like empathy and caring will go a long way.

BUT, as this story shows, within the LAC partners and the NDIA are really good people that know what they are doing and do care. There are people that deliver what they promise and do the right thing. I know from working in the system for nearly four years that there are many of these people. Sadly, there are also too many that should not be there. They need to be weeded out. Recruitment needs to be revamped and a deep knowledge of disability needs to be a mandatory requirement for anyone that gets job in the NDIS environment. Lived experience is preferable.

To the people that ensured my friends nightmare with the NDIS ended quickly and that she was provided with plan that could make a difference I say thank you. To the people that made such a mess of my friends plan in the first place, I beg you to get another job – Potentially you are ruining people’s lives!

 

End note – I received no remuneration for assisting my friend. I did it entirely voluntarily. However, I believe the service that I provided should be properly funded so that participants can get advocacy and support both pre and post plan. Ensuring quality plans will lessen reviews and the investment in such a service will save many hours of work and pain.

For the Clueless

It is official. It is pandemic. The NDIS and LAC partners are infected with the clueless. At least twice a week I am being contacted by someone who has been dished out a totally irrelevant and pathetic plan. As a good friend said to me recently, “We worked so hard for the NDIS.”  We can’t sit back any longer and let this clueless lot ruin it.  And ruining it they are.

So I am going to publish a guide. A simple guide for the clueless. An NDIS Planners Guide for Dummies, if you like. Cos, you know, they read this blog wherever I publish it. I am hoping that this simple guide will help them. Come on people don’t laugh, a bit of optimism please.

Firstly, my dear Planners and LACS, the compulsory questions on the CRM will not give you all the answers that you need. I know some of you think your job is to just read out these questions verbatim. I am here to tell you that’s just being lazy. Quite why you have to ask about people’s incomes is beyond me, but you do. For a scheme that is not means tested its a stupid question to ask. Accordingly, I always told participants (disabled people), that they didn’t have to answer the question. And they didn’t.

Unpacking a persons needs is an extremely personal thing. Accordingly, I always apologised to them for the personal questions that were about to ensue.

Asking people about their personal hygiene and personal requirements takes a great deal of sensitivity. If you don’t have that, get another job. Let it be your mantra – PARTICIPANTS ARE REAL PEOPLE. It seems silly to have to remind people of this. Sadly, there are lots of clueless robots out there that forget this and think their sole job is a production line attendant for NDIS plans. Roll them off … NEEEEEEXXXXT!

Now, a persons plan is complex. But at the same time it is a simple thing.  It really can be broken into a few parts:

  • The home.
  • The community.
  • Skills that can and need to be developed.
  • Technology and adjustments that are required.

It really is that simple. Not complicated at all. Now, before you ask the compulsory questions get to know the person and their needs around these four simple things. Once you have done this, and you have developed a picture of the persons life and needs, you can better examine their goals and even expand on them. Let me give you an example.

Ok, at home:

  1. Who lives with you?
  2. How do they support you?

Now, let’s stop there. if the disabled person is an adult, bear in mind that wonderful NDIS principle of an ordinary life. In an ordinary life an adult is not living with their parents/guardians forever. An adult is not supported by their parents/guardians forever. Most people who are married do not have their spouse doting over their every need. Most people living an ordinary life do not have their children rushing home to support them. In an ordinary life families support each other but they also enjoy each others company.

Now, in the case of children, an ordinary life generally does not involve parents having to give up their jobs. It does not involve them looking after their children intensively 24 hours a day. Sure, many parents will and do support their kids in this way but they should not have to.

Remember, as well as an ordinary life, the NDIS is built on a principle of economic participation. This is true for parents and all supports. They have a right to work.

In doing so they earn money, pay taxes and, god forbid, even contribute to paying for the NDIS. Parents and carers have a right to an income, to enjoy life and, more importantly, enjoy a normal relationship with their disabled spouse, child, sibling etc. This relationship should not solely be based around meeting their disability support needs.

LAC and Planners out there, you will hear your team leaders tell you that the NDIS does not replace informal supports. They will insist on the principle of parental responsibility. Well, I am here to tell you that they are wrong.

They are wrong because they ignore that other important principle of “maintaining informal supports.” Yes, the NDIS was designed to also support informal supports. To allow informal supports to work, to allow them to participate in the community and, crucially, to allow them an ordinary relationship as possible with their disabled family member/friend.

What happens if “maintaining informal supports” doe not happen? Well, often the family unit breaks down. It actually costs the NDIS more in the long run when that happens. The idea is to facilitate and support the informal supports. Not to give them as little support as possible because “informal supports are available.”

So, it’s not the responsibility of informal supports to drive the disabled person everywhere. It’s not their responsibility to give up work. It’s not their responsibility to be on call 24/7.

The NDIS  has a role so that the disabled person is as independent as possible. Remember this too – An aim of the NDIS is so that informal supports can have as “normal” a relationship with their families and friends as possible. Let this be your mantra because this is an “ordinary life.”

So, when you are looking at the four areas that I have mentioned let yourself think only what is required for this person to be as independent as possible to:

  • Make friends
  • Communicate
  • Be accepted
  • Be mobile
  • Be happy
  • To participate in the family, community and economically.

You touch on all of these areas and you unpack and relate it to the participants goals. Not only that, you assist the participant to identify gaps in their goals and then to improve and strengthen their goals. The solutions are in a whole range of areas:

  1. Therapy
  2. Personal; support like support workers, cleaners etc
  3. Respite.
  4. Technology.
  5. Transport.
  6. Accommodation.
  7. Vehicle modifications.
  8. Home modifications.   And so on and so on.

Most importantly remember that the aim is:

  1. To allow the person to participate in the community, family and economically as much as possible.
  2. To allow the participant, particularly if they are adults, to be as independent of informal supports as possible.
  3. To maintain the family unit and informal supports.
  4. To allow the disabled person and informal supports to enjoy each other and develop a relationship that does not solely focus on CARE and SUPPORT.

And yes, there will be times when you do not know the answers. There will be times when the disabled person and their supports do not know the answers. There will be times where informal supports say they want to do it all. Each person’s plan is an individual thing. I have a couple of tips:

  1. When you or they do not know, RESEARCH solutions!
  2. When informal supports insist on doing it all themselves, try to dissuade them because the NDIS is there for a reason. Most probably, and eventually, their need to be a martyr will lead to burn out.
  3. Think how you would feel to have your spouse, parents, siblings, friends etc catering for your every need. A disabled person wants independence and normal relationships – not one solely based around their informal supports providing for their care and support 24/7
  4. if you have never encountered a persons disability, at least do your research before you meet so that you have SOME basic knowledge.

If you don’t have answers or some of these basic understandings, do not even consider writing or submitting the plan!!!

And to the LAC who recently responded to a friend off mine who requested to be able to explore her sexuality and personal needs such as masturbation by telling her – use your husband – Get out! And don’t come back!

An NDIS plan is complex but not rocket science.  It is also not is an excuse to dump responsibility on informal supports … because that is not an ordinary life. is it???

 

SCREAM!

Picture is of a woman holding her head in her hands and screaming in frustration.

I love the NDIS, I really do! It is the best thing that has happened for people with a disability. It was built on principles of simple human rights. A recognition that people with a disability had a right to be fully included in society. A recognition that in doing so society also benefits. Invest and you shall reap. Our Treasurer, about to embark on a stimulus package because of our sick coronavirus infected economy, might want to have a deep think about this. Imagine how much stimulus could happen if Australia properly invested in making all of its infrastructure accessible so that people with a disability could access it any time and any place.

But as much as I love the NDIS I also hate it. It frustrates me that this visionary concept was so screwed up by bureaucrats with no clue. Instead of seeing the NDIS as a model of human rights that benefits everyone the bureaucrats have seen it, as they are trained to do, as a cost. So instead of people with a disability being valued and seen as an asset they are once again seen as a cost and a burden. The narrowness of this thought process makes me scream. Not want to scream, actually scream.

I am no longer in the NDIS space. I have since moved on to a wonderful job that I enjoy immensely. Even so the NDIS is never far away. In my own time I assist people who contact me to deal with the NDIS. I do this because these people have no help. They ask me to help with a whole host of things. requests for reviews, challenging decisions, dealing with access request forms, setting their goals and sometimes just lending them my eyes so that they can vent about their immense frustrations in dealing with the system.

You know there are great people in the NDIS. They know they system is shit. They provide me with leads and contacts. Take it from me, the NDIS and LAC program is full of good people, with good intensions and who are restrained by bureaucrats and leaders who have no clue. Who are restrained by a Government more interested in restricting spending than designing a system that truly invests. Ask yourself this question; since the NDIS started how much more accessible has your local community become so that people can properly utilise the funds they have received from the NDIS? – How much capacity building in your community has actually happened? I bet most of you are hard pressed to know.

Obviously, because I am deaf, Deaf and hard of hearing people approach me regularly for advice. But I have others who ask for help to including professionals. So in this last few weeks I have:

  1. Been appointed as an advocate for a deaf person with bilateral cochlear implants who got one of the worst plans I have ever seen.
  2. Met with her LAC
  3. Prepared her complaint to partner organisation and NDIS
  4. Had the NDIS initiate her review with a promise of a quick resolution ( I laughed when they said that, but they may surprise me.)
  5. Assisted prepare a response because yet another family were denied Auslan in the home. Because sign language development, according to some in the NDIS, is responsibility of the school. (Scream with me.)
  6. Discussed with key disability organisations how to assist families who cannot understand the decisions of the NDIS nor implement their plans.
  7. Discussed with key disability service providers how we can help families and individuals get past the access process because they can’t understand how to request access. If they do get the Access Request Form, many don’t not have the literacy nor understanding  to  get the request form into the system.

Just to remind you. I don’t get paid for this shit!

You know, I even applied myself. After working in the NDIS space for four years I decided to apply myself. I went online, answered their access questions, went through the steps and finally they acknowledged that I probably meet access and told me to call the 1300 number. I looked all over the page to see if there was another option for people with communication issues or hearing loss and their were none. No online text chat feature (They have a robot one that is apparently hilarious,) There is no email. There is nothing except the phone number. This is the NDIS. Australia’s premier disability support program, hardly accessible itself.

The website thus us that, ” If you need help filling in the form or making the call, you can contact your Local Area Coordinator, Early Childhood Early Intervention partner or your contact your local NDIA office.” GREEEAAAAT, perhaps not. You see the organisation I worked for could only help you fill in the front page. We would then give them the form and tell them to go see their Doctor and provide all the evidence required to meet access. This was because the organisation didn’t want any legal responsibility for the application or to get blame if all went arse up.

I am told from reliable sources that there are some LAC organisations that won’t deal with access requests at all. Apparently, if you have a disability and walk into the office or call them they ask if you have an NDIS number. If you do not have an NDIS number they send you away and say come back when you have one. When challenged they say they are unable to assist with access requests forms and only assist once a person has been allocated an NDIS number.

The NDIS website says to go in. You go in and some won’t help until you have a number. You can’t get a number until you meet access. You can’t meet access until you send in your form. If you can’t understand the form or the process what do you do? If the LAC organisation won’t help who does?

Apparently some disability organisations might be able to assist but not everyone fits within their remit. There are advocacy groups that help with appeals but they are not funded to help with dealing with the access steps. What happens if upon don’t live near a LAC  or NDIS office? What happens if you are immobile and can’t get out and about much because – You need the NDIS funding to do that? What happens if you are from a CALD background and, god forbid, can’t even read what’s on the website. What happens if you have an intellectual disability and literacy issues and no support? Well for many you are just simply fucked. There are many, many people in this boat!

And that is the system we are dealing with. Australia’s premier disability program virtually in accessible for many right at the entry point. Don’t get me started about plan implementation for those that actually have a plan … That’s a novel in the waiting!

Feel free to scream with me.  Common NDIS, you have to do better. Make your system accessible!

PS: For the record, I rang the 1300 number for an access request form. I was promised one in 14 days. Four weeks later I am still waiting!