I’m feeling at a bit of a loss for words, but I’m going to try to find the words to share this story. I feel like most of the sighted and hearing people I have told about this experience so far, at least the ones who weren’t there to observe, are just not able to understand why this has affected me so strongly. I guess it’s about being included, being part of a community, feeling connection with other people. I have learned the hard way this year that, just because I’m an introvert, that doesn’t mean I don’t need people. I should start by giving a bit of background that I haven’t felt able to share before now.
I’ve been reluctant to talk openly about my hearing loss, especially this publicly. I know I’ve talked a bit about the effect it has had on my access needs, in just enough detail to make my posts make some sense. Mostly I’ve avoided talking much about how it’s affecting me, and that’s because, to be honest, I’ve been really struggling to adjust. For most of this year, I have felt really isolated. I put off going for another hearing test for as long as I could, because I knew it would be bad, and didn’t feel up to putting myself through that. Eventually it couldn’t be avoided any longer, as it was one of the records I needed for accessing certain services. While I had been expecting bad results, I hadn’t realised just how bad they would be. A couple of the frequencies that were tested, they couldn’t record anything. I have got the impression that a lot of people are quietly waiting for me to lose the rest of it. Apparently I have the most powerful hearing aids available, and the volume is turned up as loud as possible, but I still have so much trouble understanding speech. If there’s any background noise, I can barely hear anything anyone is saying, and even if it’s fairly quiet, trying to piece together what someone is saying can be mentally exhausting. I am still waiting for funding through the National Disability Insurance Scheme (NDIS). My first priority when this happens will be to start one on one tactile Auslan tuition. About twice a year, we have a couple of lovely professionals visit from interstate, who run workshops on deafblind communication. Because of my volunteer role in the local deafblind community, I get invited to participate in these workshops, and assist with demonstrations. The really exciting thing about this is that it is a learning opportunity for me, even while I’m assisting with teaching others.
One of the really valuable things I learned was the deafblind Auslan fingerspelling. This is very similar to regular Auslan fingerspelling, but signed on to a person’s hand, so there are a few letters that had to be adapted. I also know the regular Auslan fingerspelling, plus a few words, but if someone is signing to me, I can mostly only understand the deafblind fingerspelling. I have also had opportunities to learn some social haptics, which is a great way to provide information about the environment or giving quick social messages for a deafblind person.
Given my very basic Auslan skills, I thought I’d be in the too hard basket for interpreters. I have been relying on live captioning for lectures and tutorials, as well as some meetings if they involve more than one other person. While live captioning is efficient, and there is the advantage of getting transcripts afterwards of everything that was said, it can get very lonely having that as your only way to have a group conversation. I don’t have enough vision to read people’s faces or body language, and you miss out on a lot of people’s feelings when you’re just reading a wall of text. After a while I started thinking, “Why am I even coming to class? I could read this just as well from anywhere.” That was just how disconnected I felt to everyone in the room. It’s hard for me to participate in a conversation, because there are always delays when relying on live captions, and I’m reading them in Braille, which just adds to the delay. Trying to make myself speak when there is any background noise is always very stressful, because I can’t really hear myself. If I can’t hear myself speaking, I can’t tell if I’m loud and clear enough for others to hear me, plus it’s just a really strong reminder of how much hearing I have lost.
Earlier this week we had another visit from the two lovely professionals I mentioned before, Carla Anderson, the deafblind services manager from Able Australia, and Dennis Witcombe, Able Australia’s in-house interpreter and deafblind communications consultant. While they were here, I was involved in a couple of workshops with them. One of them was quite large, and although there were plans for captioning, there was some kind of technical issue and it wasn’t working. Now most people, if they ask me if I can hear what’s being said, and I say that I’m getting the general idea some of the time, they’ll leave it at that because it’s all just too complicated for them to find a solution. I have to admit, that having had this problem so many times, I don’t always have the energy left to advocate for myself. I find it easier to advocate for other people. When Dennis asked if I was hearing much of the meeting, and I replied that I was sometimes getting the general idea of what a couple of people closest to me were saying, he didn’t leave it at that. When he told me he would arrange interpreting for me for the rest of the meeting, I was stunned. I had a whole lot of mixed feelings about this. Part of me wanted to say, “No, it’s ok. You don’t need to go to so much trouble for me,” while another part of me was excited at the opportunity to participate. At the same time, I was completely baffled as to how anyone could think this would even work, given my extremely basic skills. Well, it did work, and it was just beautiful. Dennis and another interpreter, Claudia, were taking it in turns to interpret for the people using visual Auslan, so the other was always with me, which I suspect means they were missing out on much needed breaks. As well as the interpreting, which, yes, was relying on the deafblind fingerspelling but still managed to keep up, while I was the one speaking, Dennis gave me messages about audience feedback using social haptics. It’s really hard to describe my emotional response to this experience. Afterwards, when Dennis asked how the interpreting had worked out for me, I could barely even speak. Honestly, I just wanted to hug him and cry, but we were still sitting at the front of a room full of people. I think all I could manage to say for a while was, “that was… that was just… amazing… thank you!” It was the most inclusion I had experienced in a group conversation for a long time, and connection with other people on a level I wasn’t even sure would still be possible for me. It gave me back a lot of the hope I had lost.
We had a community morning tea the next day, and Dennis interpreted for me for most of that event as well. I realised it was less mentally draining processing a language that is still relatively new to me than it is trying to understand speech. I had more space left in my head for keeping up my side of the conversation. That second day, understanding and keeping up with what was being signed on to my hand came easier, and I was able to start noticing more of the emotion that could also be communicated through touch, through different amounts of pressure of another person’s hand on mine, or even slight changes in the level of tension in the other person’s hand. Some things can be expressed through a slight change in speed, although too much of a change in speed can make it harder for me to follow what is being said. I have had people tell me that they think Auslan is a beautiful language to watch, and that it is very expressive. That expressiveness is there with tactile Auslan too, even when it needs to be quite basic. I miss a lot of tone in people’s voice these days, either because I can’t hear it, or because so much of my focus is going into just working out what the words are, that I can’t process any of that extra information. Having this kind of access to communication was a really powerful experience. I need to keep seeking opportunities for practising what Auslan I have, and learning more where possible, so that I don’t lose the bit of confidence I’ve gained this week. I need this. As time goes on, it seems more and more likely that Auslan will become my primary form of communication.
This has been a bit more of an emotional post than usual, but I’m going to end with a funny little story, especially as I’ve just had a reader complement me on my humour. At the end of one of the very long days this week, I was on my way home from uni quite late. Most of my interactions that day had involved signing. I have to get two buses to get home from uni. Anyway, I was getting off the second bus, in the dark and cold and rain, and the driver asked if I’d be able to get home ok. By this point, I was beyond exhausted, and struggling to process communication of any kind. As I turned away, I realised that, without thinking, I had signed my answer of “I’m good, thank you”. I had kind of mixed feelings about this. I’m the sort of person who gets really anxious if I feel like I’ve done something that doesn’t make sense to other people, or that draws attention to me. At the same time, it felt kind of special that the language that came naturally to me at that time, when I thought I couldn’t manage any more communication, was Auslan.