Deafblind Awareness Week 2018 & Reflection on the Past Year

The last week in June was Deafblind Awareness Week. For the last year, I have been a very active volunteer with the local deafblind community here in Adelaide. Our main event for this year’s Deafblind Awareness Week was a panel discussion, with three panellists from the deafblind community (including myself), plus our MC was also deafblind. This is the first event of its kind that we have organised in SA, completely planned and run by the deafblind community. The Royal Society for the Blind were very supportive and kindly provided the use of one of their rooms for the event. We invited people from a wide range of service providers to come and hear our stories, and hopefully gain a better understanding of some of the challenges we face and how they can support us.

 

I was very involved in promoting this event, as I usually am with our community events. This led to my being asked to be interviewed on Vision Australia Radio about Deafblind Awareness Week, and about our discussion panel. This required being interviewed on the phone. These days the only way I can manage phonecalls is through the National Relay Service. I don’t think the radio host had ever used this method of communication before, and I hadn’t used it in this setting, so I think it was a learning experience for both of us. Even though it was going to be a challenge, I wanted to go ahead with this. Since the discussion was about deafblind awareness, and the NRS is a valuable method of communication for many of us, I wanted to give listeners of the station a chance to see how this worked.

 

There’s a couple of reasons why I haven’t posted about this closer to Deafblind Awareness Week. Partly, I’ve just been ridiculously busy and quite overwhelmed, but I’ll save some of that for other posts. Mostly, it’s been hard to decide what to write, as I’ve been doing a lot of reflecting on the time since the last Deafblind Awareness Week, and how much has changed for me since then.

 

Even though we didn’t start promoting the event as early as we would have liked, we were booked out within a few days. We received quite a bit of positive feedback from the audience, and are looking forward to running more events like this in the future. We had prepared quite a lot of topics to discuss, and didn’t get through a lot of it, so we still have plenty more to share about many different aspects of life as deafblind people.

 

My own experience of deafblindness is not easy to explain. I have always had very low vision, but only started having issues with my hearing around the age of 18. I have already shared some of my rather complex story of hearing loss in a post on here last year, so I won’t repeat what I’ve already said. However, I haven’t talked about it much since then, and there is a big reason for that.

 

A bit over a year ago, I realised that I was needing people to repeat what they were saying more than usual. My hearing had been stable for quite some time, and I had started to hope it was something I wouldn’t have to worry about too much any more. I started feeling disorientated and struggling to tell the directions of sounds, and missing other small details. At first, I thought my ears were blocked because I had a cold, even though I don’t usually experience blocked ears with a cold. When the cold went away, these issues remained. My gp confirmed that there was no ear infection, not that I’d thought there would be. I visited my audiologist to get my hearing tested. The left hearing aid needed turning up, but although the right ear had lost some hearing, it wasn’t quite bad enough for a hearing aid. The problems with communication had started in noisy environments, but gradually the settings I struggled in increased. When I went for a follow-up test, perhaps a couple of months later, I definitely needed a second hearing aid.

 

At this point, there was some talk of the audiologist sending me to hospital to try to get some answers about the cause, but I was reluctant to do this. My gp, thinking of the previous diagnosis of conversion disorder, made an appointment for me to see my psychiatrist. After talking through everything that had been going on in my life, my psychiatrist didn’t seem to completely buy the conversion disorder diagnosis. He’s not ruling it out completely, but he doesn’t seem to feel it quite fits, and I’m not sure I do either. Apparently the polite version of the combined opinion of everyone involved in my healthcare is, “no one has a bloody clue,” and everyone is back to scratching their heads in confusion.

 

It’s been a rough year, and my hearing has continued to deteriorate. I put off going for another hearing test until I was talked into it because I needed up-to-date records to organise a disability access plan for uni (which I’ll talk more about in another post). I expected bad results, but I guess they were worse than I expected. I am now profoundly deaf, and pretty much at the limit of what can be helped with hearing aids. There is no situation where I don’t constantly struggle with communication. I feel like after the last audiology appointment, everyone is quietly waiting for me to lose the rest of my hearing.

 

I have been seeking out opportunities to learn new ways to communicate, and have learned some valuable new skills through Able Australia, an organisation that if very experienced in working with deafblind people. I am continuing to work on building stronger connections with the local deafblind community. I know I am not alone in my experiences, and will keep advocating for more support for myself and others.

 

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