Communication

Question One: Can you tell us a little bit about Usher syndrome?

Usher syndrome, we use this sign for it. Some people will talk about visual frames or tunnel vision. We use different terms to refer to it but this sign up on the face here for Usher syndrome: that’s pretty widespread: it’s used a lot in the community.

In terms of what Usher syndrome means, it refers to a person who is deafblind and Usher syndrome is their official diagnosis. That means that they have tunnel vision usually, but depending on the person, that tunnel may be of a varying size or shape. They might also have spots on their vision.

There’s lots of different ways that their vision impairment can manifest. We have three different types of Usher syndrome that we see predominantly in Australia. In terms of Usher type 1, that refers to somebody who is deaf from birth, from a very young age and usually profoundly deaf.

They have a vision impairment that manifests as tunnel vision and that tends to regress and get worse through time. For some people it hits a point and then it stops and forothers it keeps going. It’s very varied and it’s important to remember that not all people with Usher syndrome are the same. People with type 1 Usher also frequently have balance issues which can affect their mobility and that’s related to the effect of hearing loss on balance.

For people with Usher syndrome type 2, they tend to be strong oral communicators: they’re not deaf or blind right from birth, it tends to sort of start around about their teenage years. They usually keep some hearing, they’re not profoundly deaf generally as a rule and people with type 2 usually, because of that residual hearing, have less issues with their balance.

The third type of Usher syndrome. It’s very similar to the 1st two but the main difference is that they lose their hearing and their sight very suddenly at quite a late age, and that can have a profound effect on balance because of that sudden hearing.

So these are the three types we see primarily. Usher type 1 and 2 both have issues seeing at night, what might be described as night blindness. The other thing that is prominent with these conditions is an impact on sight and your ability to see in three dimensions.

So what I mean by that is,generally people are able to visualise texture, to see depth, different types of contour in the environment around them: that’s three dimensional. When it’s only two dimensional you can’t see all of that, and when it’s one dimensional vision, you really can’t see anything. It’s just sort of like a flat thing: you can’t see detail in the colours or the contours. The people with Usher type 1: this is often a big part of why their vision is problematic for them is because they’re seeing one dimensional: they can’t see heights and depths and things of that nature. People who have quote unquote normal vision: it’s very easy to see those three dimensions but not so much somebody with Usher.

Question 2: What has your experience with Usher syndrome being like?

For me personally, I am profoundly deaf and I’m also a strong Auslan user. I received my diagnosis of Usher at six or seven years of age, and I didn’t experience changes rapidly or every year. It was about at a rate of every seven years or so, so when I was seven I had a particular frame of vision, and then when I was fourteen that went down again. I started to develop spots in my vision and floaters and things in my vision, as well about that time.

Now, at age 49, my vision has worsened quite dramatically. I can only see out of my left eye at present. My right eye is very foggy and blurry. In my right eye I have what’s called macular degeneration.

Macular degeneration is quite similar to cataracts which I also have, but they are a little bit different. So in terms of the difference between the two, really it’s the colour that separates them. For macular degeneration it’s quite a dark fog or black colour, like if you can imagine being somewhere where there was a fire that was burning that really thick black smoke: that’s kind of how I would describe macular degeneration. On the other hand for cataracts, it’s still foggy but it’s like a white. If you can imagine being in a whiteout or snowstorm it’s similar to that. Cataracts are quite common for people with Usher syndrome and especially as they start to get past about their 20s.

For some people it can start earlier, but for most that happens later in life so beyond their 20s. You can have a surgery to remove cataracts and I do know a lot of people that have had that surgery, but I am a little bit hesitant to do it. It’s not always successful. It works for some people but not for others, so it’s quite a significant surgery and yeah I haven’t gone there yet.

So for me at present, I can only see a small field of view out of my left eye. If you can imagine something about the size of a drinking straw like a narrow tube that sort of describes the vision I have in my left eye, and that’s why when I’m communicating I need people at a bit of distance. If they’re right up close to my face I can’t see anything so I need people to be about 1 1/2 to two metres away from me, and that works well with the way my visual field expands in relation to distance of the object.

I also have issues with glare and with bright lights so for example, if somebody’s standing there and they’ve got a window behind them, or if I’m in a car and I’m looking at someone who’s got quite a bright window behind them, it’s like their face becomes black. It’s very hard for me to see.

Also let’s say for instance I’ve been outside somewhere with the lights quite bright, you know it’s that bright that you need sunglasses, if I then go into a dark room it takes quite a while for my eyes to focus and adjust. I mean normally people would need, let’s see if they come from outside to inside probably 3 to 5 seconds to adjust, but for me and for other people with Usher syndrome it can take 5 to 10 minutes row wise to adjust moving from a bright environment into a dark environment.

I have difficulty seeing at night and I also have issues with my balance.

Question 3: How does usher syndrome affect your communication and how you work with interpreters?

So as a person with Usher syndrome, of course, I have a lot of challenges and everybody is different everyone with a different type of usher syndrome is different. Often interpreters assume that we’re all the same and we are not and this also happens in the deaf community and with friends and family.

Sometimes, people assume that they have to be close for me to see them when really I prefer a little bit of distance and I need that it can be quite challenging when I’m socialising in the deaf community because people sign so fast and they use such a big signing space. I need them to adjust to be at the distance I need and also to keep their signing in the middle of the chest area here, so that I can see it. That makes it easy for me to follow what’s going on. But again, if somebody is too close I can’t see. So you know if I’m in a pub or restaurant or sitting in a car with someone where I do have to be close and I can’t get that separation, I might use what’s called tracking, where I hold the person’s wrist and that helps me to keep their signing in a space that I can see; and that helps me to follow and understand the communication.

When I work with interpreters, I often have to explain what I can and can’t see and the things you need to be aware of when you’re working with me. But again, everyone with Ushers syndrome has different needs, so really the only way is for interpreters to meet their clients before they go into the appointment and to figure out their specific needs. Something I’d like to touch on both for interpreters that have done a lot of deafblind work and those who haven’t: everyone needs to be aware of this.

Often people who’ve worked with me for a long time and might have known me growing up, they assume that they know the status of my vision and that it’s the same as it was when I was younger, but they don’t realise that it changes through time; and for interpreters that haven’t worked with anyone yet I just like to give this little tip that when you come in to meet me for the first time. When you arrive to a booking per say, I’m often going to be looking around staring trying to spot the interpreter if I haven’t met you before, and that can be a bit uncomfortable. So a good way to do this is is if you come in ask the receptionist you know who the client is they might direct you to me. Whether I’m looking or not you can approach me and then place your hand on my shoulder or arm or leg. Don’t tap, put your hand down there and hold it for a few seconds. Holding it in that way will allow me to work out where you’re standing. If you tap and then I lose that physical reference point, I don’t know where to look. I don’t know where you are in space, so if you leave your hand there it gives me time to work out where you are and I can direct my attention to you.

It’s also important that you just let me know that you here and where you are, and then once we set up the appropriate signing distance it’s a good opportunity for us to just sit have a little bit of chat maybe for 5 minutes or so. Just like a warm up you know for you and I, and that will help you get used to how I communicate and what I need.

Also it’s important that you remember that when the two of us move anywhere, like let’s say we’ve gotta go into an appointment and it’s important that I say this: often interpreters will do something that I’ll say for instance OK the doctors ready to go in and they used to working with deaf people who are independently mobile. So the interpreter will follow the deaf person into the room, but when you’re working with someone like me, you need to go in first so that I can follow you. You’re sort of guiding me a little bit letting me know which room I need to go into.

Question Four: Can you talk a bit about environmental information and why it’s important?

This is a good point it’s really important that the interpreters are aware of the difference between working with a deaf client and a deafblind client. Deaf people with functional vision can see who’s coming in and out of a room, they can see where things are placed in the environment. For a deafblind person we have way less access to that information, so it’s important that an interpreter give us that information.

For example, letting us know directly that the doctors on the phone, that the doctor is typing on the computer, the doctor has gone to wash their hands. Letting us know where the doctor is, if the doctor’s gone to a different room for instance to get something out of a filing cabinet, it’s good if you can give us that information because then it lets the deafblind person knowing what’s going on and that’s a really important part of their job.

It’s important for interpreters to understand this and why it’s important to give a deafblind person environment information, because often if you can’t see the environment around you, can’t see who’s coming into the room for instance, so it will often make deafblind people feel like they’re not fully included.

So it’s important for the interpreter to give them that information.

Question Four: Tell us about working with deaf interpreters versus hearing interpreters. What’s the difference and what other things do you use to support your communication?

I have to say I think it’s wonderful that we’re seeing so many different interpreters out there and hearing interpreters as well in the mainstream.

For me, I prefer a hearing interpreter. There’s a lot of reasons for that but I still do use deaf interpreters in certain situations and I’ll explain what I mean by that.

For any sort of face to face communication or anything participating online, sometimes if it’s a deaf person signing, it’s hard for me to understand because I don’t have the depth perception or I can only see in one dimension makes it hard for me to discern facial expressions and also sometimes to lipread specifically what’s going on. So for example, if a deaf interpreter was signing something like ‘where are you from?’, when they use that sign in the middle I don’t know if their word that is being interpreted is location, area or place and for me, I love reading English. I grew up doing that so it’s really important that I know what specific words are coming in the source language. I know a lot of deafblind people don’t care if the English word is place or area or location in this context, but for me I really like to have an accurate rendering of what the original information is.

So with the hearing interpreter I find that they tend to use mouth patterns that are more linked to the source language and for me I really rely on that lip reading because of how limited my vision is. Often I can see more of the person’s mouth patterns than I can their signing. This also speaks to why captions are important for me. Sometimes it’s hard for me to understand or to follow like if I’m watching the news, for example, I watched the captions on the interpreter and this is because sometimes the interpreter uses signs I’ve never seen before.

I’m not that heavily involved in the deaf community, I’m heavily involved in deafblind world obviously, but I miss out on some of the new language and the new signs like ‘Zoom’ is a perfect example. I’d never seen that sign before it’s like ‘Zoom, what is that?’ because not a lot of deafblind people use that programme so when this sign started popping up as like, what is that? It’s a very popular sign in the deaf community, but it took a while to catch on, so that’s a good example of why I sometimes prefer to have a hearing interpreter. With that being said, I really prefer to use deaf interpreters in a deaf context like in a classroom or a workshop if everyone is deaf, we have got deaf teachers, deaf guests and everybody is signing, deaf interpreters are amazing at capturing all those facial expressions and visual information in those contexts, and I would always book a deafblind interpreter for that sort of situation simply because they have that extra skill and at mirroring other signing that’s going on. So deaf events, deaf contexts I would use a deaf interpreter.

Question 6 Any final tips on interpreting for deafblind people?

Just remember that not all deafblind people are the same. It’s a very varied community so just be brave and ask what people need and how best you could work with people. Ask them what you need to know, it’s important to be brave and open like that. It’s also important not to assume that people don’t understand or have some kind of cognitive disability. Try and remember that deafblind people are very unique.

You have to remember that your job in a deafblind context is not just about providing auslan and providing information, it’s about providing access. So it’s natural to ask questions. Asking something like am I standing in the right place? Now note on the language here: don’t say ‘can you see me?’

Deafblind people often feel like they are the ones that are the problem, but really it’s the lack of access that creates the problem, so it’s important that when you ask questions you do it in a way that sort of puts the ownership back on you and not onto the deafblind person. So don’t say ‘can you see me?’ or something like ‘I’ve got a dark shirt on, can you see me?’. Is that good? No. Ask the question from your perspective. ‘Am I wearing the right colours? Am I standing in an appropriate place? Am I signing too fast?’ You know clarify it from your perspective, don’t throw everything back onto the deafblind person. It’s also really important to have the time to do those introductions and warm up chats. You can’t just expect to arrive and jump straight in in the way that you might do on other jobs. DBA extends a huge thanks to Paola for her time and insights.

Rikki: Rikki Chaplin’s my name, I’m totally blind and I have a moderate to severe hearing loss. I’ve been blind since birth. I acquired my hearing loss as an adult as a result of my genetic condition, which is Norris disease. I’m a musician. I work full time for an organisation called ‘Speaking up for you as a Disability Royal Commission Advocate’. I’m very fortunate to have had the life and the opportunities that I’ve had as a person who is deafblind.

Adrienne: Great thank you for that. Now I recently had a chat to you, and you shared an experience that you had doing chuchotage which isn’t necessarily a type of communication method that you often have used or have used repeatedly, but it had quite an impact on you, and I was wondering if you could share what that was like.

Rikki: Yeah sure so I was in Melbourne, for a board meeting of Deafblind Australia, and we went out to dinner one night in the restaurant of the hotel that we were staying in, and I was sitting next to an interpreter and she suddenly started repeating what was being said around the table. And I had never heard of the concept of chuchotage before so to me it sort of felt a bit random, but I thought, this is really cool. I’ve never had this happen before. It’s great, I can follow the conversation in real time. So she was repeating verbatim what people said as they were actually saying it, and it really took all of the effort out of trying to follow the conversation around the table, and brought it right up close direct to me within a couple of feet or less. So it just made it so much easier, not only to understand what was being said but to be able to contribute to the conversation and to know when it was appropriate to do so.

Although it came as a bit of a surprise at the time, it was a very pleasant one and I only found out later when I mentioned this experience to Meredith Prain, who was at that dinner that night, that she explained what it was and explained to me that was quite a legitimate form of communication, that it was internationally recognised.

I found that really interesting because I’ve never heard of it before and it occurred to me that there were probably a lot of people who are deafblind out there or even people who don’t necessarily identify as deafblind but who have hearing loss and who do find it more difficult in a larger group of people to have a conversation, that this option is available to them.

I think the work that you’re doing to promote the existence and availability of Chuchotage is really important.

Adrienne: Thank you for that Ricky, it sounds like it was quite a profound experience and sort of pulled together exactly what you needed in the moment to allow you to be really included in that space that otherwise might have been exhausting or easy to feel disconnected from.

Rikki: That’s right, you know I can usually manage a group conversation. In my case my hearing aids work fairly well, yes it’s challenging, but I can do it and I put all my effort into doing it. But it was such a relaxing experience and it just really made the night to have this made available for me so yeah, you are dead right.

Adrienne: And I’m curious I guess moving forward if you were to think about accessing something like this in the future, what could that look like for you? Is that something that you might consider including in your NDIS planning or supports that you might have around you?

Rikki: Yes certainly, you know I’d be thinking about particularly if I wanted to attend conferences face to face, which of course hasn’t been an option up until very recently due to covid, certainly I would think about hiring the appropriate person to be able to provide me with that kind of service, you know, particularly in formal settings which can be very noisy in conferences and things like that. And honestly, I was getting to the stage where started to feel like, unless I had somebody with me, I just, you know, didn’t feel comfortable attending those during large, very noisy groups and limiting myself to non live participation. So, it certainly makes that option continue to be available to me once there are face to face conferences to attend again, so yeah really looking forward to that.

Adrienne: Thank you for that and I do hope that that’s something that you’re able to access. I know there’s a bit of conversation going on in different parts of the country in the deafblind community around I guess where the support, where that sort of falls. Who’s role that falls under and it’s an ongoing piece of work and we’re looking at, I guess, providing some additional resources to ASLIA and Auslan interpreters.

I’m curious if you had ever considered before, needing an Auslan interpreter in this type of way. And if that’s something that you think would be I guess approved? as a person who does rely on the English and doesn’t use sign language yeah what do you think that could look like for you in terms of accessing an Auslan interpreter to do this.

Rikki: I think at this point in time it’s a very new concept to NDIS staff it is going to take some explanation and some time for them to get across to them the importance of this option for us. It’s not something I even considered incorporating into my plan. I’d never thought I would have the need for an Auslan interpreter. But Chuchotage is quite a specialised skill because it it’s very exacting. You’re wanting to communicate precisely what the person is saying, word by word, letter by letter, so it’s not something that just anybody can do you. It would require a high level of training so I think at a personal level, it’s something that I could certainly advocate for. But at the level of Deafblind Australia, I think this is it. It really highlights importance of why Deafblind Australia is so critical to be the organisation that advocates on behalf of people who are deafblind and that had that efficacy done by people who are deafblind. I think an issue like this is precisely why Deafblind Australia exists and why it needs to continue to exist. So, I’m proud to be a part of the work of Deafblind Australia as President and yeah you know I hope we can do all that we can as a board to support your efforts in this area.

Adrienne: Thank you, thank you so much for that and I’m really excited to be part of this work and to see what comes of it, I do think there’s much to be done but also much progress and excitement, I think for everyone involved, for what this could look like.

Rikki: That’s right and even though it might be a bit of a long battle ahead of us. We know in the blindness and visual impairment sector what a battle it has been to get audio description for example, on TV. It took 25 years and we’re just trying to see the fruits of that labour now. So, while it could be a long struggle ahead, as I say, it’s certainly one that I believe is worth it.

Adrienne: Beautiful and thank you for that. Is there anything else you’d like to add before we go?

Rikki: Yeah I’d just like to encourage everybody who requires Chuchotage, or in fact any form of interpreting service that they are not currently getting access to, to advocate for those services to be included in their plan and to join together in advocating for the whole community, Australia wide, to have this happen. Unification and unity are when approaching issues like this is so critical, and it’s important that we speak with one voice.

Deafblind Communication Bundle - Introduction

Deafblind Perspectives - Paola Avila Part One

Deafblind Perspectives: Paola Avila Part Two

Deafblind Perspectives Chuchotage: Rikki Chaplin

Deafblind Perspectives: Chuchotage: Alex Sar