00:00(LIVELY, FUN MUSIC)
00:13(HIGH-PITCHED WHINE, BUZZING)00:21(GADGET BUZZES)
00:23(THOUGHTFUL PIANO MUSIC)00:31(PIANO MUSIC CONTINUES)
00:34My name is Heather Lawson, and I live in a dark and silent world.
00:43I can't see and I can't hear.
00:52The voice you're hearing is not mine — it's my interpreter, Marie —
00:58and I communicate through Tactile Auslan, which is Australian Sign Language.
01:02I touch the signs to hear them, so it's all through touch.
01:08I use haptics as well.
01:10Haptics is just giving me an extra message.
01:15So you could draw on my back to explain some scenery.
01:22People use it overseas. It's only started recently in Australia, but it was originated in Finland.
01:29When I do presentations,
01:33I have to ask my interpreter to do peoples' expressions on my arm.
01:38So if the audience are laughing, they will scratch my arm, and I know that the audience is laughing.
01:44It gives me emotional messages too.
01:48So a smile,
01:50a frown,
01:52and O is for 'amazed'.
01:54A scratch is people are laughing.
01:58A hit is like, 'Oh, come on.'
02:01A question mark is people are puzzled.
02:09I was born deaf, and as I was growing up, I started to lose my sight.
02:19And slowly over time, it happened. I didn't lose it overnight.
02:26I could cope as a deaf person, but as a deaf-blind person, I didn't know how to cope. I had no skills.
02:37I grew up on a farm in Victoria.
02:41We used to help our dad milk the cows, and we used to help him feed the hay to the cows.
02:48It was really lovely.
02:53Yeah, at school the kids would tease me because I was different.
02:58I had lots of problems, and they would tease me; they would wave their hands in front of my face.
03:03If we were playing a ball game, I couldn't catch the ball properly.
03:06I would drop it, and I couldn't find it. And the other kids would laugh at me or say, you know,03:10'What's wrong with you?'
03:14The teacher used to yell at me and say, 'You're clumsy,' and they used to really put me down.
03:20And I thought, 'Why are they doing that for?'
03:22And I use to go off crying to the toilets. And I felt really sad and isolated.
03:27It was a really sad time.
03:31When I was losing my sight, it was terrible. I hated myself.03:36I wanted to commit suicide.
03:39I was really thinking about killing myself because it was an awful time.
03:44I was so depressed. I was really down.
03:48When I asked for help when I started losing my sight,
03:53I asked a welfare staff member for help, and they knew about Usher Syndrome.
03:59And they said to me, 'You've got Usher's,' and I said, 'What does that mean?'
04:02So they gave me some information to read over,04:06and it was the same troubles and symptoms that I'd been having.
04:09And it made me really angry, because I wished that I knew early on.04:15(PENSIVE ELECTRONIC MUSIC)
04:20When I was 28 I decided to move to Melbourne,
04:25and that happened after I was blind,
04:28and I learned to use a cane and Braille,
04:33and I learned to travel, and I became independent
.04:38(DREAMY ELECTRONIC MUSIC)
04:44(HUBBUB)
04:46(INDISTINCT CONVERSATIONS)
04:49When I'm in the train, I can feel the movement.
04:52Some stations, I know which ones they are, because of their vibration and the feel of the carriage.
04:58So when we arrive in the city, I know that we're getting closer
05:02because the rail track curves, so I can feel the carriages move.
05:10I know there's people around me in the train. I can smell newspapers or perfume.
05:17Sometimes I'm not sure where I am; I'm a bit lost.
05:21I always hold things upside down because I can't see if people are looking at me.
05:26So if they are reading that, I know they will turn it up the right way.
05:30So that's how I know people are listening to what I'm saying.05:35(OVERLAPPING CONVERSATIONS)05:40(THOUGHTFUL, FLOWING MUSIC)05:43(CANE CLACKS RHYTHMICALLY)
05:53I hated Melbourne because there were so many people, and I used to have lots of accidents.06:00(PEDESTRIAN SIGNAL BEEPS)
06:02But once I learned to use a cane, I felt OK because people would help me navigate to where I needed to get.
06:14(HIGH-PITCHED SQUEAKING)
06:16(GENTLE, FLOWING MUSIC)
06:29 DeafBlind Victorians are run by deaf-blind people themselves, and it's a self-advocacy group.
06:36We aim for advocating for equal rights for deaf-blind people, and to be involved in the community.
06:43Hi. I'll be chairing the meeting today. I'm Heather Lawson.
06:48'I do odd bits and pieces here for work, but it's really difficult to find work, because I am deaf-blind.'
06:59So, just a few things for today's meeting, but two things we'll focus on —
07:03the DeafBlind communication book and how we can improve on that;
07:07and we will talk a little bit about the DeafBlind World Workshop.
07:11So is everybody happy with that?07:13(LIGHT, UPBEAT MUSIC)
07:16I have a communication guide.
07:19A communication guide is my eyes and ears.
07:23So as Fiona is deaf herself, she can help me to be involved in that community.
07:36(HAPPY MUSIC) (INDISTINCT CONVERSATIONS)
07:39I had to advocate for five years for government funding, and five years I failed.
07:46But I finally got some funds from the government.
07:49It just made my life a little bit easier.
07:53When I started losing my sight, my sense of smell was OK, but I could still see a little bit.
08:00But once I started losing that sight and it was deteriorating,
08:03my sense of smell just became a lot stronger.
08:07I can smell, I think, yellow or white. Do you have any here? Or pink ones that I could try and smell?
08:12I think I'm a little bit out of practice, but I know yellow ones have a very strong smell.
08:20Purple ones are strong, but they have a different smell.
08:24I like yellow ones. They're beautiful; they're strong.
08:28(LIGHT, UPBEAT MUSIC)08:33I love clothes shopping.
08:35If I've got something at home that's out of fashion, then I'll just buy something new that is in fashion.
08:42I just feel the material, if it's a three-quarter or a short-sleeve. I only know the feel of the clothes.
08:54So, I have some Braille on my clothes.
08:57So there's a little Braille on my button. It says 'LB',
09:00so I know that these jeans are a light-blue colour.
09:04So I make Braille labels and put them on my clothes.
09:08(TRACKS CLACK RHYTHMICALLY)
09:13(SOFT, GLOWING MUSIC)09:15(CAUTIOUS MUSIC)
09:21(BIRDS SQUAWK OUTSIDE)
09:28I'm just wondering if there's any little hats for my cane?
09:31I think they're over that way somewhere.
09:43What is that?
09:56Oh, that's good. That looks good.
09:59Is that a Mexican hat?
10:03That looks good.
10:10 $10. Thank you.
10:14 See you. Thank you. Bye-bye.
10:21(BOTH CONVERSE SOFTLY)
10:29So, Usher's is a genetic condition.
10:31I have a brother and sister with Usher's; there is three of us.
10:35I was the first person in my family to lose my sight.
10:38Alan, my brother, and my sister Janette,
10:41they were probably 15 years later than me, but now we're the same.
10:46So, through my parents— they had five children. So three of us became deaf-blind.
10:53I've don't think I've ever met another family in quite a similar sort of situation.
10:58It's a very involved family, really. Yeah. We won't go into the full lot of it,
11:03but very unique family. We could be here all day. (LAUGHTER)
11:07To have Usher's, you need an Usher gene from—
11:10So you get the two genes from each parent, and you need an Usher's gene from each parent
11:16to have an Usher's child.
11:18So mum has the two genes, meaning that I would have inherited one of those genes,
11:23which makes me a carrier. So I have one Usher's gene and one non-Usher's gene.
11:27So meaning if my husband, unbeknownst to me, had an Usher's gene
11:32then we could have had children with Usher's.
11:34So there's a possibility that Maddy has an Usher's gene that she's inherited from me
11:38that we don't know about.
11:41So, yeah, at that time when I was pregnant,
11:43doctors did ask me if I wanted the genetic testing done to find out.
11:47I'm like, well, 'What am I gonna do? So if my kid's got Usher's,
11:50'I'm going to get rid of a child because they've got Usher's?'
11:54I couldn't do that. That would just be going against my family. Yeah. Mm.
11:59It wouldn't feel right. We grew up with very selfless parents.
12:02They were just absolutely family-focused.
12:06The uniqueness of the family, for starters, would have caused that.
12:12And one of the lesson we all learned very quickly was to become very unselfish.
12:18The needs of Heather, Alan and Jeanette far outweighed anything we needed.
12:25Where's Maddy?
12:27(LIGHT, HAPPY MUSIC)12:32Maddy's here.
12:37(LAUGHS) Are you good?
12:41She told me she's well.
12:46She's grown!
12:48I remember when you were so small; now you've grown up.
12:52My goodness. (GENTLE LAUGHTER)
12:55(GENTLE, LIGHT GUITAR MUSIC)
12:57(CHUCKLING)
13:00WHISPERS: $75 an hour.
13:02Oh, there's four people, all told. There's actually four people swimming in the water.
13:09(HUSHED CHATTER)
13:10You could imagine just how hard it was with us all trying to communicate with everyone.
13:14Yeah. We were always taught to
13:17lip-read with them when we were growing up with them and things like that,
13:21more so than a lot of fluent sign language.
13:24We've got our own family language. Yeah, so we're not as fluent.
13:27And sometimes it's a lot easier for these guys to get through to them a lot quicker,
13:30especially at funerals and things like that.
13:33We've had some massive family funerals, and without the help from Able Australia,
13:37we would never have got through with it.13:40(LIGHT, JAUNTY GUITAR MUSIC)
13:42Go to the right hand. (CHUCKLING)
13:47(CHATTER)
13:49(HUSHED CONVERSATIONS)
13:56I remember with the three deaf of us in the family,
14:01we were quite oral with signing.
14:04But when we lost our sight, we didn't use that oral communication any more, because we couldn't see.
14:11So I think that really impacted on our family.
14:13They had to learn a new way of communicating with us. Yeah, yeah. Yeah, yeah.
14:19I agree, yeah. Very much.
14:23It was a learning for everybody. Everybody learned.
14:27And it took a little bit of time to learn.
14:31The same time, deaf-blind people can seem quite angry, but they're just learning that they have to accept
14:37what's going on, and it can be frustrating for me.
14:40At my time it was really bad. In the late '80s, early '90s,
14:46the stage that I went through, it was quite negative. I was a very angry person,
14:50because I wanted support; I wanted help; but there was nowhere for me to go.
14:55If you're negative and angry, it can give you mental health troubles.
14:59But at the same time, I did have help from friends.
15:02But it was difficult because they had families; they worked; which made it quite limiting.
15:08And it was really difficult for me, and I would have to find other ways of doing things by myself.
15:13But once I received those funds, my personality grew; I was able to get back in the community again.
15:22Heather, since she went to Melbourne,... Mm!
15:26...that's when the big change came for her.
15:29We could see her at the family farm sinking into a bigger hole, you know?
15:36Mm. Nothing was happening for her, and there was probably
15:39not a lot of bright future for her back then. And then Able Australia came along and got her to Melbourne.
15:48And what that woman hasn't done, you know?
15:52Absolutely. She just leaves me for dead.
15:55(RISING, GLOWING MUSIC)
16:06Carla is a good friend of mine, and I've known her for many years.
16:11You know, she is deaf, but at the same time, we both enjoy the same things.
16:20You know, I need to learn how to be strong and assertive,
16:24and I've learnt that from Carla.
16:27We go on holidays together. It's been my dream for so many years to meet an elephant,
16:33and four years ago that finally happened, and that was with Carla.
16:37And we were feeding them. It was really really lovely.
16:43There was three elephants. Got to feed them.
16:47They were wet, and I got dirty, (CHUCKLES) but I didn't care.
16:51It was really lovely, and it was great fun.
16:57I know we've been friends for a long time,
17:00and you've had some ups and downs through your life.
17:05There's been lots of times when you've cried a lot.
17:07You've been upset and you've been angry with the world.
17:12And it was hard to accept your blindness. It was difficult for you.
17:17Being deaf was fine, but to accept blindness was really really difficult.
17:21And I tried my best to help you. But sometimes I felt stuck. I just didn't know how to help you.
17:27But you had the determination, and we just worked through it together.
17:32You worked through it, and we remained friends.
17:34That's right. Yeah, I remember that. I had a lot of pain.
17:38And once I caught up with you all those times, I really improved,
17:42so communication really helps to improve mental health problems.
17:46And I think a lot of deaf-blind people experience that.
17:50I knew the first time I met you that you have special gifts.
17:57And...
18:01you need other people to help you, though, to...
18:05You needed encouragement to get through the ups and downs.
18:10But I knew from the start you're very special, and you've just sailed along after that.
18:16Your skills have improved so much.
18:21Thank you for being my friend. Give me a hug.
18:26(GENTLE MUSIC)
18:33Deaf-blind people, they do have a lot of anxiety.
18:38And it's not fun.
18:41An example, for myself,
18:43I have to try and think, you know,
18:47smartly or a different way just to try and beat that anxiety.
18:53So I need to try, myself.
18:56I know a lot of deaf-blind people with anxiety, they don't try.
19:01So you need to try different ways to build up your skills and get rid of that anxiety.
19:09You know, they just need support. They can't do it themselves at first.
19:13So it's really important that they have that support.
19:17It is scary, but at the same time you need to think about beating that fear.
19:25I am proud of myself.
19:27I know I need to go on with life and never give up.
19:32It is unfortunate being deaf-blind, but we have to get on with life.
19:37You know, it's better than staying at home doing the same old thing.
19:41I prefer getting out there and doing different challenges.
19:46(BRIGHT GUITAR MUSIC)
19:54Golfie, he really helped me beat that fear.
19:58So that cane really helped me to achieve things, just through my orientation and mobility training.
20:05I just thought I'd make him as a character and call him Golfie,
20:10because once I'd finished that training with the cane,
20:13I would always pretend to play golf, because on the bottom of the cane,
20:17there's a little ball which looks like a golf ball.
20:22You know, sometimes, if I felt really flat or bored or sad,
20:26I'd look at Golfie, I'd look in the corner, and it would make me feel better.
20:33If I never met Golfie, I don't know where I would be now. Probably in hospital. Who knows?
20:40(PENSIVE GUITAR MUSIC)20:46(DOOR RATTLES)
20:47So, Golfie does have different characters. He's the Easter Bunny,
20:53with buck teeth.
20:55He's also a swagman,
21:00plus a jockey for the Melbourne Cup.
21:03It just makes people laugh.
21:05Sometimes I'll put things on Facebook or email people. I just like to make people laugh.
21:13(REFLECTIVE MUSIC)
21:20(MOUTHS)
21:33(CLACK!)
21:45(SOFT SHUFFLING)
21:49Being blind, touch is really important for me, because I don't have any vision.
21:54So I have the right to touch things. It's a really important part of my life.
22:01With my clay-work, it just helps me understand a picture of what things are. So I see that through touch.
22:12I thought that I could never do clay-work. I thought it would be difficult. But it's quite easy.
22:20So this is a new hobby of mine.
22:22Because I don't have a TV at home,
22:25so this is something that I can do.
22:31I'd like to do some clay hands and have eyes on the palms of the hands,
22:38because it's like my eyes are on my hands.
22:43So, at home I've been making lots of kangaroos.
22:48I remember what a kangaroo looks like, so I remember that image before I was blind.
22:54So clay-work has been helping me to enjoy things.22:59(UPBEAT ELECTRONIC MUSIC)23:07(RISING ELECTRONIC MUSIC)
23:12Hello. Hi. How are you going? Good. How are you?
23:14Good, thanks. Hello. How are you?
23:18Good. Body's good?
23:20Hmm.
23:22Bit sore. Stretch?
23:24Lovely. So we'll start with a walk today. Yep.
23:27Both Heather and Marie have taught me really basic language
23:31so that we can communicate, in exercise terms,
23:34and so that she can now come once a week by herself.
23:39(BEEP! BEEP!)
23:40If I meet people who don't sign, I don't really enjoy that —
23:45if people don't understand the deaf-blind way.
23:48So if I'm involved with friends, you know, it doesn't matter who they are.
23:52If they have an understanding of deaf-blindness and I'm comfortable with them, that's fine.
23:57But I don't want pity.
24:00Then there's people who say, 'Oh, you know, that's so unfortunate that you are the way you are.'
24:05So it's good to have a good relationship, you know, a friendly relationship with people.
24:11She likes to make up her own routines with rollers, weights, balls.
24:15She will tend to come in on a Monday and say, 'I did this at home on the weekend as an exercise. Is that OK?'
24:23(LIVELY, STEADY MUSIC)24:26(MACHINE WHIRRS)
24:36I used to feel quite flat and sore.
24:38Because I use tactile signing, I get quite tight in my shoulders.
24:42So the gym's really helped me to become strong.
24:48(DISTANT CHATTER)
24:57Deaf-blind people are very isolated.
25:00You can't share your news with other people, because there's no information.
25:04Or sometimes it's the same old thing and we have nothing to share, because we are alone.
25:09If I'm with someone, they can tell me things that are going on,
25:12and they can tell me their news and what they've seen.
25:16But if there's nothing coming in, it's very isolating.
25:29Communication is so important for me. It just helps me understand the environment.
25:34Before I was blind, I remember things. I remember the river, the bridge,
25:42the cars and the trams going past. I have that in my memory, and I know behind me is the station.
25:50There's people walking past. (MAN COUGHS)
25:54But for people who are born deaf-blind, it would be hard for them to understand.
26:00It would be really hard work explaining everything.
26:04(FAINT, UPBEAT MUSIC)
26:32Deaf-blind people have so many barriers and limitations,
26:36and without funding, it's really difficult.
26:39But we need to advocate for change. It's not easy, but we need to do it,
26:44and then we can break through those barriers.
26:48Before I was blind, I thought I would miss things.
26:52I was quite shy and I had bad sight. But once I'd built my confidence,
26:57I was able to do what I'd dreamed that I'd always wanted to do —
27:02(UPBEAT ROCK MUSIC)
27:04sky diving — and I finally did that.
27:08I jumped out of a plane. (BOTH CHEER, WHOOP)
27:10And I tumbled through the air at 2000ft. It was a free fall.
27:15I was flying through the air. I could really feel that wind on my body.
27:23And then when I landed on the ground, I was so happy.
27:28(SOFT LAUGHTER)27:31(ROCK MUSIC CONTINUES)
27:36(UPBEAT, LIGHT MUSIC) I haven't yet gone to space.
27:40I can't wait. (LAUGHS)
27:41 I'll have to find a guide who is brave enough to go with me.27:44(LAUGHS)
28:12Attitude was made with funding from NZ On Air.