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.

 

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.

 

My Contribution to a Collection of Stories of People With Disabilities

I have always had an interest in using my life experiences to support other people who may be facing similar issues. For a long time, I have also had a love for writing, but never any real focus or direction for this. I have recently been given an exciting opportunity to share my story for a book, which will be a collection of stories about people with disabilities.

 

Initially, I was just going to contribute my story and have it written by a more experienced writer. After some thought, I sent a message to one of the project managers, giving him the link to this blog, so that he could see my writing style on a few different topics. His reply was that he thought I’d be able to write my own story.

 

Writing about my life was a much bigger challenge than I had first anticipated. If I tried to start by choosing which topics I wanted to write about, I found myself unable to start writing. My thoughts wouldn’t flow, and any attempts were just a clunky mess. Eventually I decided to start at the beginning and just write. So I wrote, and kept on writing. While other people were celebrating Christmas and New Year’s, I wrote. In every available bit of time I had, I sat at my computer and just kept on writing. At the end of about 6 weeks, I had over 20000 words. The problem was that I was supposed to be writing a chapter, not a whole book, and I was told this chapter was supposed to be between 2000 and 4000 words.

 

It was a challenge to decide what messages I wanted to get across in my story, which parts of my life I was willing to share with the world, and which parts of what I’d written seemed like they would fit together in a way that made sense. I had to do a lot of editing and rewriting before I was willing to let the editor and project managers anywhere near it.

 

Another thing that I found challenging was settling on a writing style that I was comfortable with. I’ve always felt more at home with creative writing, so sitting down to write a large piece of non-fiction didn’t come easily. Once I allowed myself to bring some creativity into it, everything came together a lot more smoothly. For quite some time, my story had no beginning. I just couldn’t work out how to start it, how to set the scene. Then one day the whole first paragraph landed in my head, almost fully formed, and I had to rush off and write it down before it disappeared again. The descriptive style felt just right.

 

Last week I got my first draft back from the editor. So far, this part of the process is running much smoother than I expected. I have a few small changes to make, and only one significant structural change. I have found our editor to be very respectful of my story and of the messages I want to get across. I have not had to fight to keep the important bits, and there have been no changes that have altered the meaning of anything I’ve been trying to say.

 

I’m not at liberty to talk about the contents of the book. Sorry, you’ll just have to wait for the book. We plan to have a manuscript ready for publishing at the end of June, and to have books on shelves before Christmas.

 

I’d like to introduce you to the team involved in the project. Please click here to meet the team

 

If you’d like to know more about the project as we get closer to publishing and then sales, click here to follow us on Facebook

 

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

 

 

Communication Difficulties in the Deafblind Community

As a follow-up to my previous post, I thought I’d end Deafblind Awareness Week with a discussion of some issues that have been on my mind over the past week. To anyone else with lived experience of deafblindness, please feel free to share your own experiences or helpful tips in the comments section. At this point it seems important to clarify that the term deafblindness refers to anyone who has a combination of vision and hearing impairment.

 

Last Tuesday, June 27th, I attended a lunch to celebrate Deafblind Awareness Week. We had some very tasty Indonesian food for lunch, and a visit from a positive and friendly guest speaker from the Health and Community Services Complaints Commission (HCSCC). The thing I found challenging at this lunch was that a lot of us had quite different levels of vision and hearing, this resulted in a range of communication needs.

 

My vision is a lot worse than my hearing, so I rely on my hearing for communication. At least one person had enough vision to see an interpreter signing. One person was using tactile sign. At least one person had a microphone they could pass around that transmitted straight to their hearing device. I think two of the people present were non-verbal, and a couple of people had voices that were sometimes harder to hear. I think at least one person chose where they sat based on which ear had better hearing so they had a better chance of hearing the guest speaker. As well as the need to let the world know how to communicate with us, I think we need to learn how to better communicate with each other.

 

I have been in settings a few other times where there has been an Auslan interpreter, but this is the first time where I’ve been in a room with several interpreters at once. I found it quite confusing. I have to wonder if the interpreters had only ever worked with deaf people and didn’t have much experience of communicating with vision impaired people. I can’t really tell when someone is speaking for themselves and when they are interpreting. Also, even if I know someone is interpreting, I don’t always know who they are interpreting for, so don’t know where to direct my reply.

 

I have a few ideas, and will be discussing them with friends in the local deafblind community when I get a chance. If there’s a setting that requires interpreters, I think it would be helpful to have introductions at the beginning. For example, “I’m Jane, and I’ll be interpreting for Bob,” and then if the interpreter has something to say for themselves during a conversation, “It’s Jane, I’m speaking for myself right now”. I know I need to get more comfortable with asking people what their communication needs are. I’ve been wondering about learning some form of tactile sign. I’ve also been wondering about how to make meeting spaces more accessible for hearing aids and any other hearing devices.

 

I have a lot to learn, and some questions to ask, and a few ideas to share. I’m looking forward to more involvement with the local deafblind community. I am aware the communication barriers mean it may be challenging to find deafblind people out there in our local community who aren’t aware of our little group or of services that are available to them. Also, I’m sure there are plenty of people out there who, like me, haven’t realised that they fit into the term of deafblind because they aren’t totally deaf or blind.

 

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.