Diversity in the Deaf Community: Insights into DeafBlind and Ushers

0:00

The Deaf and hard of hearing community is diverse. There are variations such as how a person becomes Deaf and their level of hearing, but also conditions that combine sight and hearing loss such as Usher syndrome, which is under the Deafblind umbrella. Steve Ripley and Edan Chapman share their personal experiences of being DeafBlind and Ushers, and discuss the need for greater acceptance and understanding in the Deaf community and wider society.

In this episode of Our Deaf Ways, Steve Ripley and Edan Chapman share their personal experiences of being Deafblind, and specifically having Ushers.  

Usher Syndrome causes someone’s visual field to slowly degenerate and close in over time. 

For Edan, getting a diagnosis of Ushers was confronting. 

When I was like 13, 14, that was when I first learned that I would lose my vision but there was no other information. It was just 'you will go blind’. But, when? I had no idea! I was fully scarred from that. I thought that it could potentially be tomorrow that I would suddenly lose my eyes". 


In this episode of Our Deaf Ways 

  • People with Deafblindness are a diverse group. The degree of vision and hearing that a person has can vary day to day.
  • Touch is extremely important to Deafblind communication. The coronavirus pandemic has led to greater loneliness and isolation for many Deafblind people.
  • Society has limited understanding and acceptance of Deafblindness

Touch, including ‘haptic’ communication, is hugely important to people who are Deafblind. 

As a Deafblind person we really value our hands and the tactile experience of touching everything. But unfortunately in a coronavirus world, touching is now forbidden. Aargh!” - Steve Ripley. 

There's a lack of understanding and acceptance of Deafblindness in Australian society, but also sometimes within the Deaf community. 

As Steve reflects, “people are scared of disability. They think: “I don't wanna end up in a wheelchair! I don't want to be blind!” And for deaf people especially, their eyes are just so important to them. The thought of being blinded – well, they think their life will be over...” 

Watch episode four of Our Deaf Ways now, and follow the series on the SBS Australia YouTube channel, Apple Podcasts and Pocket Casts. You can also watch episodes on SBS On Demand. 

Our Deaf Ways is a series by SBS and Deaf Australia about everyday life as a Deaf person. Over this six-part visual podcast series, Deaf people from all walks of life share stories and perspectives on Deaf Ways. Episodes are released fortnightly. 

Produced in partnership with Deaf Australia and hosted by Deaf advocate Shirley Liu. Produced and directed by Paula Thornton. Edited by June Stathis. 

Deaf Australia and SBS acknowledge the Traditional Custodians of country throughout Australia and pay our respects to their Elders past and present. We extend that respect to Aboriginal and Torres Strait Islander peoples who are watching with us. 

Deaf Australia and SBS celebrate Auslan and recognise all Deaf leaders in Australia who have advocated for Deaf, Deafblind and hard of hearing communities. Deaf Australia is proud of everyone’s contribution, whether big or small, in preserving our language, community and culture. 

 

Transcript

Shirley Lui: Hello. Welcome to the Our Deaf Ways video podcast.

I’m Shirley and I want to introduce two people who are DeafBlind and Ushers.

Their names are Steve Ripley and Edan Chapman.

They will share their personal experiences about being DeafBlind, Ushers, and much more.

You will gain so much information if you watch on.

 

Edan Chapman: Hello there. So, tell me a little about your eyesight.

What’s your situation?

Steve Ripley: My range of both vision and hearing is reduced to being very small.

My condition is called retinal dystrophy. 

It’s where the eyes have a nerve, joined to them by a whole series of connecters, which carries messages of light and darkness and lets the brain form a picture.  But in my eyes these connections are deteriorating and falling off. 

So now, my vision in one eye is completely gone. 

With the other, I have a very, very small window of vision, maybe about 5 degrees.

At night I can’t see anything – it’s completely gone.

In the daytime I can see a little bit but not enough to be able to read anything on my own without help. 

That's why I have someone here to support me and interpret for me, in case you're wondering why this woman is sitting next to me.

She's helping me by conveying the interactions from you because I really can't make out at all what's on the screen.

What about you?

Edan: So my story; I have Usher’s Syndrome, which means that my visual field is closing in, that my eyesight is degenerating, basically.

I’m in a little bit of a similar situation to yourself where one of my eyes is worse than the other.

At the moment, I’m 38. So I can still live independently and get out on my own.

I do use a cane, but really at night-time is where I’m seeing that I’m starting to have more of a problem.

The best situation would be that there were plenty of light. But, in saying that there’s always variations, things that change.

You know, whether the weather has been good, or if I’ve had good sleep the night before, or whether I’m free from anxiety or stress and these things.

So, it’s a really difficult part of my vision, for me, is that things change every day, and I’m constantly needing to adapt and adjust myself which can wear me out easily.

Steve: Oh yes. We‘re all called DeafBlind, regardless of whether we have Usher’s syndrome, or RP or RD, but that doesn’t mean it’s all the same. 

I mean, both you and I are DeafBlind, right?  But that doesn’t mean our vision is the same.  No – it’s different. 

For example, you may wake up in the morning and have vision from one eye that’s quite good.  But tomorrow – it might be totally blurred.

For me – I always loved travelling – though now I can only do it with support.  But before I would get around independently, initially with just a cane. 

But then I ended up saying “OK, I’ll accept a guide dog”. I’ve had two guide dogs. But both of them died and I was heartbroken. 

I cried so much.  But I still kept the cane.  Before though, when I would walk around with just the cane, people would look at me and think I could still see quite well. 

But no! I have Usher’s Usher’s Usher’s!  It would make me quite stressed and anxious.  Some days I would wake up and think;

“No, it’s all too much! I don’t want to deal with the world today!” And I would just curl up and stay in bed. 

Do you have the same feelings?

Edan: Yes absolutely, I mean, I think for me, I’m at a point in my life where I’m starting to realise that some things I just can’t do anymore.

You know? In the past I’ve always travelled, and I’ve been to so many places around the world and I’ve always loved seeing the world, but my energy levels are really starting to become lower, and lower, and lower.

So, yeah it’s really difficult.

Steve: Yes, I understand.

I’m the same, I really loved travelling.  But now I’m 62.  You’re only about half my age!

But before I really loved, and I still love travelling, but now I really need a support person to describe for me what’s happening around me. 

As a DeafBlind person we really value our hands and the tactile experience of touching everything. 

But, unfortunately, in a coronavirus world, touching is now forbidden. The world has really changed. 

No touching, and then there’s coronavirus lockdowns.  There’s so much loneliness.  It’s so isolating when you can’t Zoom, or can’t Facetime. 

When I had someone living with me it would be ok, they would describe things for me, like my interpreter is doing now.  

But being home alone is so stressful! Coronavirus really changed everything for me.  Was it the same for you?

Edan: Yeah yeah, very much so.

I’m fortunate enough that I’m still able to see well enough to use social media and maybe I scroll a little too much, but you know I do have a few concerns about what my future might look like when I do finally lose my eyes, or they become much worse and I’m unable to see my device.

What does that mean?

And like you were saying before, touch is an extremely important thing for me.

Like, hugs I’m famous for my hugs, right.

Steve: Yeah, me too.

Edan: So, I do feel the extreme effects that covid has had on changing the world around us. Like, I lipread a lot for example and so the use of masks has taken that ability to lipread away from me, and touch has been taken away, and so I really start to feel the effects of all of that in the way of isolation.

So yeah, I just really don’t know what to think of the future.

Steve: Yes, it’s a new world, a new world.  I think it’s a really big problem for DeafBlind people, for those with Usher’s syndrome especially. 

Contact with people, touching people, is just so important for us.

In the past I was Deaf but could still see. My world was visual. I was involved with Theatre of the Deaf, and theatre performances. 

I really loved life then. I loved looking at and observing everything.  Then I started to notice at night that my vision was getting worse. 

But I was still driving then.  It was quite frustrating because one time I had an accident because I thought this car had suddenly pulled in front of me because its brake lights suddenly appeared. 

But no, actually it was my vision that had been deteriorating.

So I gathered my courage and went to get my eyes tested, and found out my sight was getting worse. That’s when I applied for a guide dog. 

To get the guide dog I had to go for training in Melbourne.  At the Melbourne training I was the only Deaf person there and only one with partial vision. 

All the others were fully blind but hearing.  So I couldn’t interact with any of them.  There was no interpreter, I couldn’t afford an interpreter. 

So I stayed there for one month, guide dog training with no interaction with people. 

Fortunately, some Deaf people from Melbourne would come and visit me, that was a relief.

So after the training going around with the guide dog by myself was great, but one problem was that people would see me with the dog and I assume I could hear, and start yakking at me.

They didn’t get a response of course, because I’m Deaf. 

But I could feel them yakking near me. Another time – I loved going to the book shop and standing in front of the shelf, trying to read the book titles. 

People would see me and see the guide dog and then start speaking to me. I would get startled because I could feel their breath. 

They then couldn’t work out why a DeafBlind man was looking at the books.

I think they thought the dog was interpreting the books for me! But no – sorry!

Edan: Yes absolutely I can relate to that so much. So many times in the past.

You know what, I’ve been using a cane since I was around 28, on a regular basis.

And really, over all of those years it’s been more so for the people around me out in public because so many times you’ll see people who on their phones and they’re not looking at me anyway and so when we do bump into each other and they explode and they get angry and start pointing their finger at me, I can just show them the cane and that resolves the conflict in the moment.

But on the other side as well I’ve been out on some occasions, maybe say I’ve been out to the pub or on a tram, let’s say, those types of things, and I might be sitting, keeping to myself, reading my book and I look up and I see faces looking at me angrily and many times I saw them mouthing the words, you’re not blind and I’m like….

you know what look, I can understand how they might have come to that conclusion in the moment looking at me,

but one thing that I would like to say to the people of Australia is just that we need to judge less. You know, do you really think that I want to pretend to be blind?

That’s ridiculous. I just don’t get it. So yeah.

Steve: Yes indeed. 

I’d actually like to raise one burning point about the Deaf community in general. 

Do you think the Deaf community is comfortable with people with Usher’s, with blind people in general? Do you think they are comfortable?

Edan: Look, I think that it has improved. I think it has improved over time but I also think that a part of that issue is fear.

Steve: Yes, yes!

Edan: Because, you know going blind is a Deaf person’s worst fear, right. So, sometimes I feel like it’s very confronting for them.

But at the same time, you know, everyone has their own way. I mean I’ve got some amazing Deaf friends who understand and who are well committed to making sure that I’m included, and they’ll say to me hey,

“look over here, look over there”

and make me aware to the things that are going on around me that I otherwise wouldn’t have seen so…

Steve: Yes – more aware.  More aware.

Edan: Yeah, yeah exactly. That’s right.

Steve: I think it’s interesting that many years ago Deaf schools, yes Deaf schools, they had DeafBlind kids in them. 

So Deaf kids would grow up knowing and seeing DeafBlind kids, working with them and helping them. 

But when the Deaf schools disappeared, the DeafBlind kids got segregated.  I think one impact from the closure of all the Deaf schools, is where do all the DeafBlind kids, and those with Usher’s syndrome, where do they go? 

I really don’t know.

I really applaud the Deaf community for the way they have adapted to the change. But really I think it's as you say I think it's the fear. 

People are scared of disability. They think, “I don't wanna end up in a wheelchair! I don't want to be blind!”

And for Deaf people especially, their eyes are just so important to them. The thought of people being blinded, well, they think their life will be over but no, really, life will go on.

It will continue.

Edan: Yeah, yeah really good point.

And it was something that I wanted to raise also about Deaf schools and about Deaf clubs.

Um, for me personally I was lucky enough to grow up in a time before all the Deaf clubs had closed down in New Zealand and in Australia.

And so you know I’ve got some amazing memories as a kid having finally met some Deaf adults and seeing their stories and learning their language and how they used their hands and I was so absorbed in all of that, but also now I feel that those places were also a safe place you know.

Especially for the Deaf-blind community because it meant that those people knew that that was always there, but now with the rise of social media, with Covid and these things happening around us, everyone is staying at home and everyone’s stuck on their devices.

Whereas, in the past I would always commit to hitch hiking let’s say or catching a bus or jumping on a tram and I’d go long distances to visit my friends.

It was always my thing, I didn’t particularly care for the trouble but now, I can’t do that.

What does that mean? Where does that leave me? Where do I go? What do I do?

And I feel that that’s what’s missing in the community for us now.

Steve: Actually, again, I think it's a new world, now with the NDIS. There's been big changes, many changes.  You remember before we were talking about safe spaces. 

Especially in the past with the Deaf Society, the Deaf Club, the DeafBlind club, various DeafBlind groups existed. 

There were these safe spaces and if you had a problem you could go there and talk to someone.  But now they’re all closed and all gone.

My only safe space now is my home, that’s all! Am I criticising the NDIS?

No. But I do question how they think of DeafBlind as a disability. 

I wonder, you are Deaf. You have Usher’s. Do you think yourself of DeafBlind as a disability group, or what?

Edan: OK, so, my cultural identity is Deaf. I am Deaf.

Because I feel that society is not very accepting of blindness, or of DeafBlindness at least.

And maybe that’s what stops me from fully accepting being blind. So, you know I find it quite difficult to identify as ‘blind’ when I can still see.

Steve: It’s a good point.

You're talking about independence and self-worth. Self-worth in the Deaf is quite strong - they think: “I'm fine! I can access and do everything I want.” 

But when people look at DeafBlind they think, “Oh no! They can't do anything.” But I have many DeafBlind friends and blind friends and their lives are really rich! 

But at the same time – they feel the way other people pity them, and they don’t need that. 

My problem is YOUR attitude! Your view of me! I want to be able to say, “I can!” But you limit me.

I’ve been lucky that in the past I’ve worked with a DeafBlind client with braille. You know braille? Yes, so I got used to braille system for a long time. 

So, I learned at the same time when I had to develop materials for him to read in braille.

So then when I discovered that my eyesight was getting worse, it was depressing yes, but I also felt relieved, that I already had some braille skills and knew how to use braille as a medium.

But the equipment you need for it is so expensive! So I say to the NDIS: “I need funding for Braille equipment.”

But they say, “No, you don't need it yet.” I say: “Yes, I do!  I want it!” 

Unfortunately, many people with Usher’s, being signing Deaf too, their English is not so good.

So that can make it hard for them to comprehend information in braille.  But does that mean they can’t? 

No. They can, we just have to teach them to use it in a way that fits their needs and abilities.

So I think self-worth for many of us can decline over time because other people tell us we can’t do things. Is it the same for you?

Edan: Yeah, yeah absolutely. Look, I just wish that people understood… um, how do I say this?

That we should not be waiting until you’ve fully lost your vision to then give the supports you need.

No. It should be well before the fact. There’s preparation, we need to give them time to adjust and to go through the process.

Not just wait until they’re fully depressed and fully broken and then offer the support? No.

Steve: Yes. it’s hard to deal with the trauma of the diagnosis and trying to learning braille and other things at the same time. It can screw things up for you.

Edan: Yeah I haven’t learned tactile sign myself. Maybe because I can still see?

But I have communicated in that way with others in the DeafBlind community where they lay their hands of the top and use the tactile element.

But personally I haven’t been through that journey myself and also I still need to learn braille.

I’ve been putting that off for some time now.

But, tell me what skills do you have in that area?

Steve: Yes, with hand-over-hand method it definitely took me a long time to accept tactile signing. 

I remember I first started to use tactile when I went to New Zealand for a DeafBlind conference, and everyone was using tactile. 

So I thought why don’t I join in and accept it. But it definitely took me a while to accept.

One problem with tactile is I can’t see anything, I can’t see any space as a point of reference. I had to learn a new way of using it.

Another thing, have you noticed my interpreter sometimes using my upper arm to communicate information? 

That is called “Haptics”. Yes, “Haptics”. It’s used during our interaction for my interpreter to communicate extraneous information, such as when you are laughing, she will use the haptic sign for “laugh”, or “yes” or things like that.  It adds extra layers to the communication. 

When I am giving a presentation, I will always have an interpreter behind me, so that while I am presenting they can use Haptics on my back to convey to me what is happening out in the audience. 

They’ll tell me who’s smiling, who looks puzzled, who looks grumpy, and things like that. It really helps me a lot.

With braille, I started about three years, or four years ago. But now I’m really good with braille. 

I love braille. My phone, my laptop, everything is in braille. It’s all been adapted to suit.

What are the important things in my life now?  Some things are a bit hard to start but once you get going its OK. 

It’s a bit like learning to read – you have to take it one step at a time. Now I’m teaching braille to other DeafBlind people, one step at a time. 

A long time ago, they used to try to teach everything at once, but now we just do it in small doses one at a time. 

I’m really looking forward to teaching you one day.

Edan: Oh yeah I would really appreciate that actually.

You know what, a funny thing is in the past where I’ve been travelling and sometimes I’ve been a little frustrated where, for example, maybe I’m on a train you know,

and as we’re travelling along - I’m talking overseas travel here - and I might be looking out the window and I feel that I don’t want to miss out on all of that beautiful scenery as we’re travelling but you know half the time it can be boring and mundane as well.

So, I look around the carriage and I see that all of the hearing people have headphones and I know that I can't read and look out the window at the same time so I feel that that is potentially one reason that I slap myself that I should have learned braille.

Steve: You’re ready when you’re ready.

Edan: Oh yeah absolutely.

But, there is one benefit there that I think would apply to me now while I can still see a little.

It would mean that I would be able to read my book whilst not missing out on the scenery out the window.

Steve: Yes, yes, yes.  I agree – 100%.

My old teacher, who was themselves blind, always used to tell me, “Focus on the dots. Look at the dots and memorise them”. 

Then later you will learn to just read them naturally. I know that many people with Usher’s do struggle learning braille. 

They are dealing with trauma and trying to learn this new skill of braille and when it’s hard they can get despondent and lose motivation.

When you know you need it though it’s good to take it up.

Edan: Yeah well, for me when I was like 13, 14, that was when I first learned that I would lose my vision.

But there was no other information. It was just 'you will go blind’. That was it. But, when? I had no idea!

And so I was fully scarred from that. I thought that it could potentially be tomorrow that I would suddenly lose my eyes and so I panicked and I struggled with that.

And I think that it was around the same time that Guide Dogs Australia, a representative from that organisation had come to say that they would teach me braille.

But I refused.

I just flat out rejected it and I didn’t accept.

So, I think that a part of the reason maybe that I still haven’t learned braille is from that experience.

So, I fully agree, you know, I’m tired of people saying, hey you’ve not yet learned, or that you should do this…

please give me, or allow me to navigate my own life.

Steve: It’s your life, yes.

Edan: Yes, exactly. And I think that’s really important.

But look, I don’t want people to think that it’s all sadness.

I really value what I’ve learned from my life experiences and sometimes it is difficult to remember to be positive.

Steve: That’s true.

Edan: But you know what, I’ve had some beautiful experiences because of people who care.

Those people sort of look past my differences and include me and we get along and some of those experiences I’ve had, I couldn’t even believe had happened.

And it was all because that person just wanted to give me something special.

Anyway, I think that our time is almost up. And I think that I wanted to finish just by telling people what I would like to see improve for the DeafBlind community.

For me, personally I wanted to ask you all just to remember that we, the DeafBlind, have rich lives and rich experiences and please, just remember that we’re people.

Steve: Yes, in the flesh.

Edan: Right. Exactly, yeah. Just take a little bit more time. Just slow down, just a little. I think that’s all. What about you?

Steve: That’s true, I agree.

There’s one essential point I feel we agree on. That when we are trying to socialise, we need people to approach and come to us.

We can’t see who’s out there.  We can’t recognise faces. They all just look blurry. 

We need people to come over and sit with us and talk to us. They can talk about anything. It doesn’t have to be specific things.

They can talk dirty if they want. Whatever! My world is this really small space around me.

I just need people to come over and talk to me and give me a hug - like we were saying before I love hugs. I want hugs.

Edan: Yeah, I fully understand.

You know that’s part of my current journey as a DeafBlind person.

Is that I’m starting to become more restricted in my vision, and my depth of field and that my personal bubble, my space is becoming more defined and closer.

But that’s OK, that’s fine, yeah. Well, thank you.

Steve: Right now, my blockage or barrier is work, especially now because of coronavirus.

Everything is on zoom and that's a barrier because I need to find interpreters so I can see what's going on.

With Zoom, like today, like I know you're cute, but I need an interpreter to tell me what you're saying so I feel like my work has really declined.

I feel a bit stuck with this as before I would do lots of training of DeafBlind and different assessments of people’s needs and how to develop their communication skills, or teaching writing.

Also, I would do presentations about DeafBlind awareness. 

But lately I feel like I can't get out of the house, I can’t do group training.  It’s all on Zoom and I’m always struggling to get interpreters. 

It’s really difficult. But at the same time, I really enjoy emailing, writing, and reading. 

It’s not that I can’t cope, I can, it’s just a different way. Same as you.

Edan: Yes, yes absolutely.

I’m working a lot with Zoom at the moment and it’s becoming really difficult because my eyes are just burning out.

Yeah, and I struggle. My energy levels are just being drained. But, you’re right you know, there’s always a way.

There’s always a way. I just want to have people give me a little more time and attention.

And that’s OK I feel. It will happen. The job will get done.

Steve: It’s true. I feel you and I can provide a really positive role model of DeafBlind life.

Edan: Yeah, I would love to collaborate with you some day.

Steve: Great!

Edan: Alright well, thank you so much.

 

Shirley Lui: I'm sure you have learnt heaps from them.

Now we know there are many different types of vision and communication preferences.

Just like there are so many Deaf or hard of hearing people who have different communication requirements.

It’s beautiful thing about the Deaf community, that we have a variety of people who make our community a richer, diverse group.

So that’s it for now. See you next episode.