My First Experience with an Interpreter: regaining some connection to other people

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.

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Deafblind Awareness Week 2017 – My Experience With Dual Sensory Impairment

Hey everyone,

 

Appologies for the lack of posts so far this year. I’ve been busy just getting through life and dealing with people’s assorted forms of bigotry and nonsense.

 

Today is the start of Deafblind Awareness Week, so it seems like a good time to share some of my experiences of dual sensory impairment.

 

I’ve had very low vision for as long as I can remember. I don’t have any clear memories of all of the running around to doctors and specialists in the early days. From what I was told, it took a while to get a diagnosis, and when I did, it turned out to be incorrect. The ophthalmologist I saw throughout most of my childhood got carried away about a couple of observed symptoms and decided my case was exactly the same as a patient he’d seen just before my first appointment with him, and so diagnosed my condition as Rod Monochromatism. As far as I’m aware, he didn’t actually do any tests at all.

 

As time went on, I realised that people’s expectations of what I could see were very different to my own experiences. Around the time I started school, I was given these thick red glasses that I was told would make me see better. I wore them for a while, partly because they helped with my photophobia, and partly because I liked the colour. (Red has always been the colour I’m most able to see.) When I was six years old, I had an experience at school that made it clear to me that the glasses weren’t helping. I was eating my lunch at an outside table and looking around me, wondering where the duty teacher was. Frustrated, I took off my glasses and looked around me again. Suddenly, I could see the vague shapes that must be other tables with other kids at them, and a sort of person shape that was too tall to be another kid, so must be the duty teacher.

 

For years after that, I would ask more and more questions about my diagnosis, and try to explain what my experiences of my own vision actually were. It seems like most people don’t want to hear what a kid might have to say about their own life (something I also faced in other areas of my life). Twice that I am aware of, my vision has slightly deteriorated. The first drop in vision was around the time I started primary school. Before school, with much struggling and staring at the page, I could identify the letters in one of those large print alphabet books with the big pictures in it. Some of the pictures were a fuzzy mess to me, but some I could recognise the shape. I started learning Braille as soon as I started school. The second small drop in vision was when I was about 16 years old and had just started going to TAFE. The ophthalmologist had suggested my vision would stay the same, but this was likely because he had decided by then that I didn’t have any functional vision.

 

I asked around and found another ophthalmologist who seemed to have a good reputation, (not that reputation meant much to me at this point since everyone seemed to think my previous ophthalmologist was brilliant). Anyway, the new guy sent me off for all kinds of tests and eventually decided on a diagnosis of Retinitis Pigmentosa (RP). The symptoms of RP fit better with what I can see. I’m not sure it explains everything about my vision, but it’s the closest diagnosis I’ve had, so I’m fine with that at least for now.

 

Somewhere around the age of 18 or 19, (it’s hard to remember exactly when), I started losing my hearing. It was getting harder and harder for me to communicate with people, especially if there was background noise. Despite the suggestions of a lot of people around me, it took me a long time to get my hearing tested. Because of my vision impairment, I had always relied a lot on my hearing, and I was in denial that there was anything wrong. Then something happened that dragged me out of denial and convinced me to get my hearing tested. I was hit by a car that was driving the wrong way down a one-way street. Fortunately the car was moving slowly, but no, the driver didn’t stop to check if I was ok. I was a bit sore for a while but didn’t seem to have any significant injuries and didn’t go to get myself checked out.

 

Not long after that, I went and got my hearing tested. The results weren’t good, and every subsequent test had worse and worse results. I was given two rather large hearing aids with those big chunky moulds that fill the whole ear. It took me a while to adjust to wearing them. I didn’t realise how much I’d got used to things being so quiet. After getting hearing aids, sensory overload was a regular problem for me. One day I was sitting outside with a friend from work. I’d moved house not long after starting to lose my hearing. I put my hearing aids in and said to my mate, “Wow! There are birds in this suburb after all!” I’d lived in the suburb for months without ever hearing birds.

 

Because my vision impairment had been diagnosed as RP, everyone involved in my healthcare seemed sure that I had Usher Syndrome. They seemed to become more convinced of this as my hearing got worse. Somewhere along the way I was warned that I could end up losing the rest of both my vision and hearing. This scared the absolute shit out of me. Having my ears filled up with some kind of putty so they could get the shape of my ears for the hearing aid moulds gave me a glimpse of what it would be like to be even more deaf than I already was, and it was terrifying. Someone suggested that I do some training under blindfold to prepare myself for the possibility of losing the rest of my vision, and I refused. That too was terrifying.

 

Eventually the subject was raised of my having the option to get a cochlear implant. I really didn’t understand much about how the implant worked or any risks involved, but I was losing my hearing fast and seemed to be out of options. There should have been more effort put into getting informed consent from a patient with dual sensory impairment. I only heard part of what was said to me in appointments, and rarely (if ever) had a support person present.

 

I’ll try to leave out any waffling and unnecessary details. Anyway, I ended up getting a cochlear implant. Fortunately, for some reason which was probably told to me without me hearing it, they only did an implant on the left side because my hearing was slightly worse on that side. I don’t know if they planned to see if that was successful and then do the right. The implant didn’t work. I was unable to learn to recognise any of the sounds that came from it. All of the specialists seemed baffled. Going through all of the stress of surgery for nothing was effecting my mental health. Communication after the implant was more of a struggle than before it. There was a bit of residual hearing in my left ear, but it was even worse as a result of the surgery.

 

Much to everyone’s confusion, and especially mine, the hearing in my right ear gradually started to improve. This is when all of the specialists realised they might have been headed down completely the wrong track. One of the specialists sent me off to see a psychiatrist who he had discussed my case with. It turned out my hearing loss was caused by Conversion Disorder, also known as Functional Neurological Disorder. This is a condition where trauma or psychological distress is converted into physical symptoms that have no other medical explanation.

 

It took maybe a couple of years for my right ear to have test results in the normal range, and another couple of years for my left ear to improve to just a mild hearing loss. For a while I stopped wearing hearing aids, but I still struggled in some settings. I now wear a hearing aid in my left ear. Hearing less in one ear than the other can really interfere with my sense of direction and distance. Think of it like how if you can see a bit less in one eye than the other it messes with your depth perception. Having a hearing aid really improves this for me. For some reason I am still often prone to sensory overload. My vision seems to have stayed the same for quite a long time now, but there’s no way of knowing if it will deteriorate further until it happens. As far as I know, it’s possible for my conversion disorder to relapse and for me to lose hearing again, but it’s been stable for a few years now and I’m hoping it stays that way.

 

I was surprised and a little bit confused when I was recently invited to get involved in the local deafblind community. It had been quite a few years since I had thought of myself as deaf, and so I worried that I would be an outsider. However, the community seems to be made up of people with varying degrees of deafblindness. We still have shared experiences of the issues that are specific to having a dual sensory impairment. In the future, I am hoping to take on some voluntary work in the deafblind community.

 

I’m not sharing this as inspiration porn or pity porn. I’m just sharing it as one person’s experience, to help raise awareness of the many different experiences people may have of deafblindness.

 

All I Want for Christmas is Two Less Moobs

Does anyone remember that song that goes “all I want for Christmas is my two front teeth”? Well, if I was to rewrite the song for myself it would go something like “all I want for Christmas is two less moobs”. The last time I did anything for Christmas was in 2012, and even that year I told family we could catch up but I couldn’t afford to do presents.

 

The next step in my medical transition from female to male is top surgery (chest reconstructive surgery). I’ve been saving for this for over five years, and as time has gone on my saving has gotten stricter. The only thing I spend money on that I could call fun is my gym membership, and I didn’t initially decide to do that because I enjoyed it. I needed to get down to a healthier weight and build up a bit of muscle to get the best possible results from surgery. Fortunately it turned out that I do actually enjoy going to the gym.

 

The only present I wish for this Christmas is a bit of help with saving for top surgery. I started a GoFundMe campaign a few months ago, and I really appreciate the few donations I’ve received. If anyone wants to give me anything for Christmas, this is the thing that would have a huge impact on my life. It’s a present that will last me a lifetime. The dysphoria I experience constantly because of having parts of my body that don’t match my identity really messes with my mental health.

 

Also, if anyone would be happy to share the link to my GoFundMe campaign on their own blog or facebook page or twitter feed or anywhere else you can think of, that would be really awesome. Thanks for your support.

 

Here’s the link:

gofundme.com/2fnzk8es

 

The Motivation That Started My Fitness Journey

Some people seem to be able to jump straight into regular exercise, purely for the fun of it. Personally, maybe because of struggling with long-term mental illness, I often need to find a reason to convince myself to do things. So why am I spending so much time in the gym?

 

Since 2010, it’s been my goal to get top surgery (chest reconstructive surgery) as part of my transition. I started testosterone injections in February 2013, and between the increased appetite from the change in hormones, side-effects from other medications, and mental health issues, I put on quite a lot of weight.

 

It wasn’t really until some time in 2014 that I decided I needed to do something about getting into better shape. I realized that if I was going to get the best possible results from top surgery, I needed to lose some weight and at least tone up my muscles a bit.

At first, the only changes I made were going for walks a few times a week and eating less junkfood. I ate more fresh fruits and veggies, and cut down the sugar and fat and simple carbs. I walked around my local area for about an hour at least three times a week, as well as all the walking I end up doing because of relying on public transport. I started trying not to sit for too long without getting up and moving around a bit. Just with these few small changes, I lost about 18kg in a bit under a year and a half.

 

As often happens, things gradually slowed down, and I realized I would have to do something different if I wanted to keep making progress. I decided it was time to join a gym. Fortunately, I managed to find one where the staff are really positive and friendly and supportive.

 

I wanted to focus on building up my pecs, because I thought that would give me the best results after top surgery. It didn’t take me long to realise it was important to work on all of my muscles. At first, I can’t say it was exactly fun. I hadn’t been in a gym for at least a few years, and I was quite unfit. A few sessions with a personal trainer helped me get started on the right track and kept me motivated through the initial slog.

 

After a while, I actually started enjoying training. I got competitive with myself, trying to get better and better at each new exercise I learned. In the last 16 months, I’ve made quite a bit of progress, but still have a lot of work ahead of me. Getting top surgery won’t be the end of my fitness journey. In fact, given how much more comfortable I’ll be with my body, it will likely be the beginning of something bigger and better.