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.

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.