Deafness or Hard-of-Hearing is not a loss – it’s a gain! However, hearing people are often not prepared for how to interact with us. So here’s a background to my own experience with deafness and what I would like you to know about communicating with your deaf and hard-of-hearing friends!
Words by Katia | Edited by Wednesday | Photography by Natasha Killeen
I have Sensorineural Deafness, which is hereditary and degenerative. In simple terms, it means that the connection between my ears and my brain is ‘broken’ and the nerve isn’t able to send messages to my brain. I can physically hear the sounds (there’s nothing wrong with my cochlear or ear drum), it’s just that these sounds are not being delivered to my brain which means that they can’t be processed. My left ear is profoundly Deaf, and my right ear has now started experiencing hearing loss (note: at the time that the article was written, this was accurate. Katia is now profoundly Deaf in both ears and has only 20% of her hearing remaining).
Some days are a lot better than others, and some days I literally can’t hear anything. It feels like when you have a shitty phone charger and you have to find the perfect condition for it to work. Sometimes it’ll work straight away, but other days you’re fiddling around with it forever and even once it’s connected it drops out after a few hours. I started experiencing my hearing loss about ten years ago, but it really wasn’t profound (or affecting my every day life) until about two years ago. To be honest, the way I found out it was becoming more severe was because I started to lose my balance on the Pole and Lyra (dizziness and vertigo is often a symptom of late onset hearing loss). I’m not the only Deaf or Hard-of-Hearing person in my family. My Grandma is also Deaf – in fact, she was one of the first of batch people to ever receive a cochlear implant! It is probable that I will be profoundly Deaf in both ears within the next ten years (or sooner!), but it’s something that is really difficult to predict. It may never happen – or it may happen tomorrow, who knows?
At first I felt really upset about it, but I’ve had a lot of time to process it and realise that it’s actually OKAY. Of course, I still have moments (and will continue to!) where I almost get hit by traffic because I don’t use my eyes properly or feel jumpy at night because I can’t hear people walking behind me (luckily I know Krav Maga…I am still a weapon) – but I’m mostly alright.
Something that really helped, is learning Auslan and getting to know people and making friends in the Deaf community. It has definitely made me feel a lot less alone, and I enjoy sharing funny stories about our experiences. Deaf people are really used to people not being able to sign, and honestly they are extremely good at being able to read body language and can pretty much understand anything if you know just a little bit of Auslan. I kind of just make up signs and do interpretive hand movements if I don’t know something, and the Deaf person is usually like, “okay I think you mean this” and ta-da! You have learnt a new sign.
It’s my goal this year to make more of an effort to get formal lessons, because my hearing is now at the stage where using Auslan is actually just more comfortable for me than talking and listening. It’s difficult being in the “middle” of both languages. In oral conversations, I feel like I’m constantly chasing my tail and by the time I’ve figured out what was said, the conversation topic has moved and my response is no longer relevant. In Auslan conversations – I have to concentrate equally as hard, but I generally understand everything. But because the language is new to me, I feel like I can’t respond using signs quick enough. I have to search my brain and figure out how to say what I want in Auslan, and by then it’s just too late (and again the conversation topic has changed). I’m excited for when I can sign without having to think about what I want to say – but I am grateful that I have picked up understanding it quickly as I have been able to create access for myself that I would otherwise not have.
I feel like my life is a constant show reel of people scremming at me because they think I’m rude. I assume that it’s because I am usually hearing what the person has said (or realised they are even speaking to me) after the third or fourth time they have repeated themselves. Nobody ever thinks that, “oh – that person is probably Deaf!”. Everyone always thinks – “that person is incredibly rude, why are they not responding?” I also find that because I am oral (meaning that I can and choose to speak), people don’t usually take my access needs and Deafness seriously. I am constantly being told, “but you don’t look Deaf?” (this one is GREAT – I still don’t know what Deaf looks like?), “but you can speak?” (a lot of Deaf people can speak, especially those who went Deaf later in life), or even “but we had a conversation the other day and you heard me?” (yah – because it was in a quiet space and now we are in an echoing room with background noise!)
The other day I went to the hospital to receive an MRI scan for my shoulder and literally said I was Hard-of-Hearing several times, and hospital staff still kept shouting at me from afar and getting upset about having to repeat themselves (even though all my forms said I had hearing loss). It kept happening over and over again until I went to the machine – and at that point I was literally pointing at my ears saying one word, “DEAF!” It can be challenging being Hard-of-Hearing, as people don’t really understand what it means. When I introduce myself to hearing people, I usually say “I’m Deaf” as it gets the message across more easily with less confusion. But when describing my identity to other Deaf or HoH people, I usually say that I’m “Half-Deaf” or “Hard-of-Hearing”.
A question that I constantly get as a performer, is “how the heck do you do it with not being able to hear the music?” I actually have a pretty a pretty amazing method, that works for me perfectly and I find it quite easy to follow.
^ An example of my choreography breakdown sheet for a Babydoll Lyra routine.
Step one:
I usually get some help with choosing a song. I’ll ask my partner what they think, or Dahlia and I know they will give me honest feedback. I like songs that either have a heavy base to follow (I like music that I can feel), or music that is acoustic or very light (i.e. Doesn’t have many instruments overlapping).
Step two:
Once I have chosen a song, I create a table on my computer where I map out all of the timing and beats. I have columns that have the time of the song, like 00:00 – 00:30 “Intro” etc. and I pop in the beats in each column (eg. 4 X counts of 8). I usually get help counting out the song, and I have someone else tell me where the fancy beats are in the music so that I can hit them. Once I have the skeleton of the song down, I start adding in my Lyra combinations into the columns (I generally know how many counts it takes to do each move – so that helps).
Step three:
Once I have my combinations down, I get Dahlia to listen to the song and check to see if my combinations “go” with the music. She will then change things around for me and we will then usually give it a crack to music. I will dance and she will check to see whether I am off beat or things are looking weird.
Step four:
I memorise the choreography and counts, and rehearse the routine over and over again until it’s in my muscle memory. Dahlia will usually memorise my routine too, and we will create signs to symbolise the different moves. We often practice the routine with Dahlia wearing headphones or the music really low so that she can tell me if I am out of time.
Step five:
During the performance, Dahlia will always be there for me on the side of the stage or on the front of the stage where I can see her and she will usually “conduct” the music for me and sign my moves so that if I get lost, I look at her and know where I am. Sometimes, even though I practice my routine perfectly – on the day things happen and sometimes I lose my spot. For a performer with hearing – this is annoying but still okay because they can hear the audio cues and know how to get back on track with their routine. For me – it can end in disaster as I will be completely off beat and have absolutely no idea where the special ‘accents’ in the song are and therefore won’t hit them. My performance will look like a shamble.
When I perform doubles with Dahlia, we actually prepare a little differently. It’s sometimes harder because I don’t have her right in front of me physically cuing me. But it’s also easier because she is right next to me and is able to communicate in a slightly different way. We have a series of discreet taps, facial expression cues and we always position ourselves so that Dahlia is slightly in front of me and always visible. We also practice our doubles choreography with no music so that we know how the timing feels rather than relying on the music.
It’s been a huge blessing to have Dahlia in my life. Not only is she studying to be an Auslan interpreter, she is also just the best at literally giving up so much of her time to learn my routines, study my music and help with my choreography. It feels like an achievement for the both of us when I finish a show. She is very much part of my whole process, and my shows are always a beautiful collaboration – even if she’s not performing beside me.
I absolutely love performing and attending shows, but there have been a few times where I have felt really uncomfortable as a performer and audience member as a result of people not taking my Deafness seriously or emcees/other performers making a mockery of my interpreter. A few times when I have performed without Dahlia, I asked the emcee to come up onto the stage when my show had finished so that I knew when the music had finished. Of course, they didn’t and I continued to dance with no music and looked like a complete dingus. Other times, emcees have interacted with my interpreter on stage and made them repeat swear words, obscenities and performers have even thrown pieces of clothing and props at my interpreter because it’s “funny” to hearing people. It’s not okay to make fun of my access. It’s not okay to laugh at Auslan, or humiliate my interpreter on stage. By interacting with my interpreter – they are impacting my access. I am not able to understand what is happening because my interpreter is being heckled.
On the other hand, a lot of shows don’t even have interpreters to begin with. If you are a producer of a show, please consider hiring an Auslan interpreter. Once Deaf people start realising that there are interpreters at your event, you’ll have a whole new group of people that will buy tickets and enjoy your show! If you need some help with setting it up, and need some advice with how to go about it – please reach out, I am happy to help!
It’s important to talk to me face-to-face, and not from behind. If there is a lot of background noise, or if we are in a large space – I often need to be within one metre from someone to be able to hear them properly, so please make the effort to walk up to me. If we are in a loud space, please don’t come up to my ears and scream or whisper in them – I still won’t be able to hear you. Your best chance is to stand directly in front of me and speak clearly to my face.
Please make sure you speak clearly, and don’t mumble. That doesn’t mean speaking slowly – sometimes that can make things worse because it disrupts my ability to lip-read you. Because I need to lip-read, it’s also important that you don’t cover your mouth or look away from me when you’re speaking. Conversely, you don’t need to “slow” your speech down or yell, simply speaking as you usually would is enough for me to understand what you’re telling me.
Some great ways of grabbing my attention is to wave your hand in my line of vision, tap a table or tap my shoulder. We are taught not to do these things growing up as a hearing person, as they come across as rude. But in the Deaf community it’s perfectly acceptable! It can be really upsetting when people ask others questions that are supposed to be directed at me. Make the effort to get my attention, and don’t be scared to engage with me in a respectful physical way if needed.
A lot of people think that Hearing loss is just like turning the volume down on a speaker. It’s actually so much more complex than that, and different for every individual. For example, I have trouble distinguishing the difference between noises that are directed at me (like speaking) and background noise. It feels like there are layers and layers of sounds upon one another and I can’t find the one I want to focus on. I also have trouble hearing higher pitched voices and also on the other end of the spectrum with lower, deeper tones.
Loud environments can be extremely overwhelming for me, as I can’t make out any sounds at all. I also find group settings super difficult, as I can’t predict who is going to speak and who I need to look at to be able to follow the conversation. A lot of the time, I’ll miss a few words and then another person will speak and then before I know it – I’m sentences behind everyone else and it’s just impossible to catch up. I end up just tuning out completely and sit alone, which feels a bit lonely. It’s really important that when I do engage in a group conversation that people aren’t talking over the top of one another and that they are leaving enough time in between each other talking for me to catch up.
I also find that because I find it difficult to control my voice levels, I tend to talk quite softly as I’m always worried about talking too loud. As a result of this, people tend to talk over the top of me when I’m teaching in class and engage in their own conversations. If you do end up having me as an instructor, try to refrain from having conversations with each other in the class and take turns when speaking and asking questions.
I receive a lot of messages, and have conversations on a daily basis where people try to offer me advice, treatment options and technologies available for my Deafness. I know that these messages and conversations come from a good place, but the truth is – I am actually okay with going Deaf. Sure, it’s kinda annoying sometimes and it does make dancing/socialising a little more complicated. But I’m adapting and learning to not only live but succeed in a world without sound. There are a lot of technologies available out there that offer support, and I have tried some/most of them. I am aware of my options and have made my own decisions. I really appreciate the thought and know that people are only trying to help, but it’s not okay to give people ideas and advice about their disability or medical/health issue. I promise you, that we know more about our options than you do.
On the other hand, offering sympathetic statements like “I’m so sorry you’re losing your hearing!” isn’t helpful either. There’s nothing wrong with being Deaf… It’s not terminal! Asking me, “isn’t there any cure? Like hearing aids, cochlea implants or surgery?” is also really ignorant. What a lot of people don’t understand, is that hearing aids, implants and surgery aren’t suitable for everyone. There are lots of different types of hearing loss – and no treatment option will restore hearing to the same degree as a hearing person. It’s also up to the individual as to what treatment option they want (if any), some Deaf people choose not to be ‘treated’ – and that’s okay! At the end of the day, it’s access that needs to be improved – not my hearing. P If you are in the Burly, Pole, Aerial Industry (or other entertainment industries) and produce shows – hire an Auslan Interpreter. I literally can’t attend without one.
It can be really frustrating when people tell me, “don’t worry” or, “I’ll tell you later” when I don’t hear a joke or a story that was told. It robs me of being able to enjoy the experience as it happens, and also makes me feel like a burden or not important enough to repeat what was said. You would be surprised with how many times this happens to most Deaf and HoH people on a daily basis. Make the effort and allow us to have the same experience as you.
Another Deaf/HoH ‘faux pas’ is talking/looking at my interpreter instead of me. When I am using an interpreter, often people will ask the interpreter questions that are supposed to be directed at me, such as “Can you tell her…” or “Can you ask her” – or they simply direct the questions at the interpreter instead. When this happens, it makes me feel invisible – which is not a feeling I want. It’s extremely important to talk directly to me when I’m using an interpreter, and not have a good ol’ chat to the interpreter without including me in the conversation. I always say to people when introducing Leah (my usual interpreter) “Leah is like a guide dog for my ears! I know she’s super cute, but please don’t interact with her!”. I mean, it’s true – Leah IS actually really cute! But she’s busy working, and she’s there to provide access, not answer questions about Pole Dancing or what shoes to wear in a Burlesque class.
People can make things more accessible to those with hearing loss through ways such as completing an Auslan course, going to Deaf awareness workshops or even petitioning for captions to be placed on films.
Gareth | Deaf
In my experience, lots of hearing people ask some silly questions and comments, for example – How can you drive? “Oh, you’re deaf? IT’S…VERY….NICE…TO…MEET YOU! HOW ARE YOU?!” “How can you speak? I don’t know how you do it. How can you live without music? Are you reading my lips? Like…right now? Do you read braille? I would kill myself if I'm deaf. Can it be cured so that you can hear? Hello, handsome.......oh you're deaf........ bye. Can you read and write? Why do you have different sign languages, it should all be the same. I'm sorry, can you hear me? I’ll pray for you. Is it true that you make noise in bed?” The only thing that a deaf person cannot do is hear; we can drive, read and write. Some of us choose to speak, and some other prefer not too. Some deaf people can lip read, others didn't learn how to. Some have cochlear implants; some have hearing aids, and some choose not to use any hearing-assistive devices. Deaf people use different ways to communicate and to interpret the world around them, we pay extra attention to body language, to understand the connotation of what people are saying to us. We can feel the vibration sounds makes; we don't “listen” to music, rather we “feel” the music.
Sam | Hard-of-Hearing
An early memory of mine is sitting at the dinner table with my parents; my sister wasn’t born yet. I was just starting to gain some vocabulary as a child. The conversation went as always with me saying “what” over and over. “What” didn’t mean anything to me until years later. At this dinner, whether my memory serves me right or wrong, I was banned from saying “what”. My parents just had enough. I don’t remember getting hearing aids. They’ve always been a part of me and they’ve always helped me in the hearing world. I look back on my childhood as one of inclusion, happiness and fun. However, if you asked me now, I feel my life is chaos divided by two worlds: hearing and Auslan and I’ve only felt that within the last two years. Auslan has given me the experience of full inclusivity, something that I thought I had. I can’t help but now look back on my childhood and think what did I miss? I can’t help but now, at dinners or social events, feel exhausted and helpless. I don’t always feel that. For Hard-of-Hearing people it’s complex to explain what situations are okay and aren’t. I’m not being rude when I’m not involved as much in conversations or if I’m on my phone, I’m feeling disconnected. I just feel like how I must’ve felt when I said “what” all those years ago and all I want is for people to consider that.
Dion | Deaf
When I was 11 months old, I was diagnosed as Profoundly Deaf; my mother cried. When I was two, I was forced to wear hearing aids and to fit into hearing world, my mother realised it did not work. When I was three, I learned Signed English and I was able to express my thoughts but I was delayed in English language. When I was five, I received a cochlear implant and I was kicked out of my deaf school because I was “cured” and then I was banned from using Signed English, the teachers then forced me to speak when I didn’t want to and I was banned from signing. When I was ten, I’d had enough of teachers telling me that I don’t speak very well and I told my mother that I needed signing back so I transferred to my old school, and I was happy again. I was fourteen when I had my first Auslan interpreter, suddenly I saw a new perspective through Auslan and I learnt so much more than ever before. When I was sixteen I was bribed to go to Australian Hearing and wear a hearing aid while wearing my cochlear implant, I said no and then I was forced so I chose to fake it because I knew I didn’t want it. When I was nineteen, my teachers forced me to do Year 12 over two years, in the second year I was so bored as I only had one subject but again they tried to stop me from going to TAFE to learn extra subjects, even though I was bored. I was twenty-one when I decided to stop wearing my cochlear implant because I felt comfortable being deaf and wanted to own my identity. I married my wife when I was twenty-six years old. I have become a successful teacher, teaching Auslan for the past nine years. Now, I am thirty-two on a new transgender journey and I am still proud to be Deaf. Let me tell you why. I own my deaf identity because I don’t let anyone tell me what I can do and can’t do. This is who I am in my journey. Own your identity and be proud of it.
Jess | Hard-of-Hearing
My sister and I were born Profoundly Deaf in both ears caused by our genetic inheritance. We both grew up with cochlear implants from a young age. Our mum sacrificed working to focus on our speech therapy and rehabilitation. I am very grateful for this because this has allowed both of us to thrive in the Hearing world. While I had the amazing opportunity to grow up with CIs, I was not always this confident. I struggled with my identity growing up, seeing my hearing loss as a hindrance and barrier. I often felt isolated and unable to speak up because I was not able to follow conversations fully. It was not until university where I went on an international volunteering experience that I pushed myself outside my comfort zone and decided to reclaim my self confidence. From here on, I decided to explore my Deaf side of my identity and did this through I engaged with the Deaf community to organise High Tea Auslan experiences where customers could learn Auslan over High Tea. This experience was transformational and proved to myself I can achieve anything. Through my university experience, I also went to my first pole dance class where I was nervous and excited at the same time. I was curious to see what it was like and was hooked. For me, pole dance is an exciting challenge because it encourages me to embrace my sensuality and to be vulnerable with my own body. Now, I don't see my hearing loss as a hindrance but simply a chip on the shoulder that makes me unique. All it takes is self confidence and empowering yourself to educate others on adjustments in the studio.
Words by Leah Brown | Auslan Interpreter
Auslan interpreting is from English-to-Auslan and Auslan-to-English. Interpreting is a live process, which differs from translation. Translation work is prepared, polished, consults references for accuracy and clarity and is usually recorded as a resource for repeated use. Interpreting is generally live and a one-off instance to provide communication access between deaf/hard-of-hearing and hearing people.
Interpreters and translators need to be certified by NAATI, and provide proof of both frequent work and professional development every 3 years to retain their certification.
As Auslan and English are grammatically different and there is not a sign for every word nor a word for every sign, so an Auslan interpreters role is to produce the closest equivalence of meaning in both languages. Auslan is a visual language and intonation, inflection and emotion are shown using non manual features (facial expression and body language). Auslan interpreters are bound by a code of ethics meaning all of their work is confidential but also they must provide equal access so as to best remove any barriers faced by deafness. This means that if people are making an aside or talking in the background, this will also be interpreted. Additional background information is sometimes also provided such as if there is a noise outside, alarms, a persons voice sounds different than usual (e.g holding in frustration), any perceived danger and who the speaker is. Cultural bridging is also required. This is a term used to describe softening and/or education about the differences in deaf and mainstream (“hearing”) culture. For example, eye contact and turn taking is extremely important in deaf culture so an interpreter may ask for people speaking over one another to repeat themselves one at a time so that this can be interpreted. Deaf people are often also culturally quite blunt and so an interpreter may interpret a direct question from a deaf person more indirectly so as not to offend and follow the protocols of mainstream culture while still getting the answer. The interpreter must understand both cultures to effectively facilitate communication with as little misunderstanding as possible taking into consideration the intent of all parties.
An interpreter must also remain impartial as they are a conduit for communication only. Interpreters should not break this role to give opinions/make asides and must attend jobs without any bias. If this cannot be done in a specific situation the interpreter should refuse the job.
When working with an interpreter it is important to look at the deaf person to whom you are speaking, and not look at the interpreter. Maintain eye contact with them and give them time to reply. It is important not to ask the interpreter for any opinions or advice and to speak to the deaf person using first person. E.g you should say: “Hi Katia, it’s lovely to meet you. I was wondering how long you’ve been teaching Lyra for?” Do not say (to the interpreter) “How long has Katia taught Lyra ?” Or “Can you ask her how long she’s taught Lyra?”
Positioning is also important and where possible the interpreter should be opposite the deaf person and next to the hearing speaker so that communication is comfortable.
While an interpreter on stage might be interesting, remember they are there to provide access. Heckling the interpreter, deliberately swearing or being crass, or repeating things you might think are interesting to see in Auslan is not appropriate as it is a mockery of the language and can be confusing as well as offensive for the deaf person. You should also be aware that humour doesn’t always translate easily from one language to another so even doing this in a humorous way may not translate well and still be confusing. Puns virtually do not interpret into Auslan at all, due to the visual language being so far apart from English and words that sound the same but have two different meanings usually have two completely different signs. It’s also best to speak naturally at an even pace and as you usually would so the interpreter can do the best job possible.