(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.
So many feels . I cried when she talked about sky diving and feeding the elephants
She’s great.
I know she dont want us to feel sorry but damn life is so unfair.
What a great video. Thanks for posting it. This video is one all people should see...when they have grown up enough to understand. Heather says it herself near the end, that the isolation felt by one born deaf and blind must be incredible. Learning how to improve the lives of these people is one I hope we achieve in my lifetime.
You are one of my heroes, Heather!
Why doesn't this lady have a dog or something?????