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Trudy: I was diagnosed with deafness when I was three. I had meningitis before that
at one but I wasn't diagnosed until I was about two and a half and then I became deaf.
In my late thirties I went to a restaurant, it was a family birthday, and I came outside
and crashed into some trees. That's when my family realised that I had a vision loss.
So, I got my eyes tested and it turned out that I have Retinitis Pigmentosa. However,
I have a brother who is deaf who was diagnosed with the same problem and we have an understanding
that we've got Usher's because it's very rare that there would be two in the family. We're
exactly the same. He's got, like me, tunnel vision.
Claire: So you didn't have any awareness until you were thirty that you were losing your
peripheral vision?
Trudy: No. The only thing that, well it's hard for me to remember, but I'd trip over
and I'd stumble and people and my friends just thought I was a clumsy person.
Claire: Yeah that's very common.
Trudy: Even my family thought that because I was sort of clumsy. I became more aware
because I'd be walking down the street and falling over benches you know the...
Claire: The yellow benches yeah..
Trudy: And it was particularly worse at night time because I've got no vision at night time.
I don't see people coming around the corner. People find it hard to understand my vision
loss because I've still got tunnel vision and I can still read and write. So a lot of
people think how is it that I've got a vision loss? But I am legally blind. I've been assessed
by a medical doctor, an eye doctor, and he's confirmed it numerous times. I keep fearing
to go again, I'm due to go again, and I'm worried about my vision...
Claire: How much you've lost..
Trudy: Yeah.
Claire: That's the hardest thing about RP is that it's a gradual loss so you've got
to constantly adjust. And it's true. People see you and think that you've got perfect
vision.
Trudy: Yep. That's when I started mixing with Deafblind people because I'm very fearful
that my vision......what will my life be like if I lost my vision? Because I love things
like bushwalking, going to the movies. I was doing adventurous things, even bike riding!
Claire: It's very very hard and even your hearing. You do very well with your hearing
one on one.
Trudy: Yeah I wanted to add that I did go to a deaf kindergarten before I went to primary
school and at that time they banned sign language. I went three days a week there and it was
very intense and focused on reading and writing and speech therapy I remember. It was very
intense. However, my brother's four years younger than me and they stopped it. So he's
fluent in sign language. He's even a teacher of sign language.
That's a big contrast and people find it quite puzzling. Also in my family we were brought
up with oral communication. When you're in a family where there's a lot of communication
you develop these skills. So that's why I'm the way I am now. I've tried to do total sign
language but I always revert back to how I was trained up as a child.
Claire: So it makes it very hard to communicate with the group of people here because most
of them are signing.
Trudy: Yeah. Also their english as well. There can be miscommunications sometimes.
Claire: Well anyway, good on you for persevering because you're a very active member of this
group
Trudy: Thank you.
Claire: Yeah it's great!