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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University: Something I Thought I’d Never Do

I have always found formal education quite intimidating. High school was not a supportive environment, so I left as soon as I could. I had mixed experiences with Tafe, but took on too much in my last attempt and burned out. Somehow, the way people talked about uni, it just seemed out of reach for me. I assumed it would be a lot harder than Tafe, but I’m coming to understand that it is just a different style of learning.

 

The way people talked about uni, I thought I’d be sitting in class from 9 to 5, Monday to Friday, or maybe even more than that. I was surprised to learn how wrong I was. When I described my perceptions to a good friend of mine, who is a student, she explained that I would likely have a lecture and a tutorial each week for each topic, and the rest of my study would be done independently. This started sounding like a learning environment that I would be better suited to, but I was still very apprehensive.

 

My main area of interest for employment would be community development, especially with the deafblind community. I had been thinking of returning to Tafe and continuing the community services course that I’d had to drop out of several years ago, but I found out the community development subject had been removed from that course. This subject was my main motivation for returning to this course. Around this time, there was a whole sequence of situations that increased my frustration about not being listened to because of my lack of qualifications, and how powerless I felt to bring about change as a volunteer.

 

When I discussed a lot of my frustrations with a friend, she suggested the Bachelor of Disability and Developmental Education (again). She had been trying to encourage me to take this path for quite some time. Every concern I raised about university seemed to have a solution. As time went on, it felt like everything was pointing towards this being the direction I should take.

 

The disability services at my uni have been very supportive of my needs so far. It has been a bit of a process of trial and error to figure out exactly what supports I need to be able to study and participate in my classes, especially as I am struggling to adjust to changes in my access and communication needs. It seems that not all staff are always aware and accepting of the role of disability services, and I am going to have to find a constructive way to address this issue.

 

I am currently doing Foundation Studies, as that seemed my most realistic pathway into uni as someone who didn’t finish high school. So far, I have found the actual study side of things to be more manageable than I first expected. My biggest struggle with assignments has been the research. All of the tips we were given about how to research more efficiently haven’t been much help for me, and they rely on your being able to visually skim for headings and other things that would stand out to a sighted person. This has a significant impact on how long it takes me to complete assignments.

 

Lectures and tutorials are full of their own complex set of challenges. I can’t understand speech at a distance, or even hear that someone is speaking to me if I’m in a space with background noise of other conversations. I rely on live captioning to know what is being said in my classes. I have a BrailleSense Polaris, which basically functions like a tablet, but which has a refreshable Braille display and a Perkins-style Braille keyboard. This device also has text-to-speech, but I have switched off that function, since I am trying to become more used to Braille, and since I can’t hear it in most environments anyway. For functions that I’m not yet used to interacting with the BrailleSense for, I just plug it into my laptop and use it as a replacement for trying to hear the text-to-speech on my laptop. This is my current method for accessing live captions.

 

Any face-to-face interactions tend to be quite stressful. There is part of me that sometimes wishes I had chosen to study online, but I sort of want to prove to myself that I can do this. There is also the fact that, given my barriers to communication, it would be too easy to let myself become isolated if I decided to just do everything from home because that is more accessible. I’m trying not to let that happen. I still need to work on finding a balance there though, to avoid burning out.

 

Learning my way around new environments with the help of an orientation and mobility instructor also takes longer these days, since it is harder to communicate information about my surroundings. A lot of educational institutions don’t seem to be very well thought out in terms of access. It seems like once they’ve put in some ramps and a lift, a lot of people think their job is done. I would love to see these environments laid out in a way that is less disorientation for someone with vision and/or hearing loss to be able to navigate. This problem is compounded by the fact that my course is spread over two campuses, so I have had a lot to get used to in a short space of time. Last week was the first time I caught a bus independently in over a year, because the background noise makes it almost impossible to communicate with the driver, and without that communication, I don’t know where I am. I’ve been relying on trams, because I’m so used to the automatic announcements that I can still just manage to identify them, even though I can’t hear the words properly any more. However, the only way to get to one of my study locations is by bus. I will have to investigate what gps options are compatible with my BrailleSense.

 

One day I hope I can try to be more involved in the social side of uni, but for now, I need to focus on wrapping my head around surviving the lectures and tutorials. My uni has a queer society, a disabilities collective, and a vegan club, all of which greatly interest me. I’m not yet sure how to make this work. I really struggle with communication in any group setting. The live captioning for lectures and tutorials has been arranged through disability services, and is paid for by the uni. This is not a service that I can afford to pay for, so I don’t have access to this in social settings. I’m still waiting for funding through the national disability insurance scheme (NDIS) to start learning tactile Auslan, which is likely to eventually become my primary form of communication.

 

I have passed my first topic, and am starting to feel some hope that I might actually get through the course. I still have days where I think, “who the hell did I think I was kidding when I said I could do this?” Fortunately those days are becoming less frequent though. Foundation Studies has its frustrations, such as being in a class full of people who aren’t going into the same area of study as me, as well as a tutor who seems to have no interest in what I want to study, but it is a means to an end. It is a flexible environment for the trial and error of supports, and for getting a feel for life at uni. I am looking forward to being able to put this behind me and move on to my degree, so that I can get the qualifications I need to be able to better support my community.

 

Communication-Friendly Eateries: my accessibility project, primarily for the deafblind community

Last October I was fortunate enough to win a youth leadership scholarship from Deaf Can:Do, the Royal South Australian Deaf Society. I was awarded this scholarship to help me to undertake a project to create a directory of cafes and restaurants that have good accessibility for those in the deafblind community. While my focus is on deafblind accessibility, I will also be sharing this resource with the Deaf community and the blind community. If there is anyone on the autism spectrum, or with any other sensory access needs, who is wondering if this resource could be helpful, please feel free to get in touch. I will provide ways to contact me at the end of this post.

In the middle of last year, when I took on my volunteer role with the deafblind community, one of the challenges that immediately presented itself was the issue of finding meeting places that were accessible for all of us. Given that the term “deafblind” refers to anyone with a combination of vision and hearing loss, our community has quite a wide range of access requirements. When this scholarship was advertised, it seemed like a perfect opportunity to address these issues.

Unfortunately, the project has been off to a slower start than I had originally hoped. This is partly due to the fact that I took on a couple of projects that started at around the same time as each other. In some ways, parts of the project have also been a bit more complex than I fully understood when I started out. I don’t see this as a major problem, but it is definitely a learning experience.

So far, this project has definitely had its challenges, but I believe that all of these can be worked through. When I started out, I thought I knew my own access needs quite well, and that I just needed to make enquiries into the access needs of others in the community. During this time, my hearing has been deteriorating, and so my needs have been changing. As I have had time to get to know more members of the deafblind community, I have also gained a better understanding of just how wide the range of access requirements actually is. To help me to get a clearer picture of what it would take for a café or restaurant to meet as many of these needs as possible, I have created a survey, which I am trying to circulate to as much of the community as I can reach.

Please click here to take my survey.

Although the focus is on the needs of deafblind people, I would also appreciate responses from people who are either Deaf/hard of hearing or blind/vision impaired. If you wish to fill out the survey from the perspective of a professional or a parent/caregiver, it would be preferable if you have some awareness of the specific needs of deafblind people. I really want this project to address the access requirements of as many people as possible.

As well as the main goal of putting together a directory of places that are accessible, I intend this project to be an opportunity for community education. I am hoping this will be an opportunity to raise awareness among business owners about what they can do to make their venues more accessible and how to be adaptable with their communication. If you’re reading this and you own or work in a café or restaurant and want to know more about how to make your venue more deafblind friendly, I would love to hear from you.

Once I have a detailed picture of the community’s needs, I will be traveling around Adelaide and surrounding suburbs, assessing cafes and restaurants to see which ones meet as many of these needs as possible. I hope that some of those that are less accessible will be open to making improvements. I am also hoping to collaborate with some disability organisations later on in the project to arrange training for venue owners and staff in how to provide assistance to deafblind customers. A couple of examples of this would be some basic Auslan training, and how to guide someone to a table.

For anyone interested in following the progress of this project, I have created a Facebook page. This will be a place for me to post updates and seek community input. This is also somewhere that I can mention eateries that don’t quite make the final directory, but which stand out in some way. I hope this will establish positive connections with these businesses, and be an opportunity for education on where they could improve in the future. Anyone is welcome to follow this page. I am passionate about community education, and I welcome questions and feedback.

To keep up-to-date with the project’s progress, or to send me messages on Facebook about anything relating to the project, please visit the

Communication-Friendly Eateries Facebook page

To send me an email,

jasper.cleland@gmail.com