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