December 30, 2025 • 28 mins
This week, Simon reprises his chats with Kerrie Duff, a Paralympian bronze medalist, and Rayna Lamb, a dynamic disability advocate and passionate dancer
Kerrie is a disability advocate who currently works for Team Lab and has her own consulting business. She and Simon discuss mentoring, leadership, and equality.
To connect with the WA Spina Bifida community, you can go to the Facebook page: facebook.com/groups/SpinaBifidaWA
Rayna shares her stories and experiences, from forming Women With Disabilities WA to performing in a groundbreaking production of The Little Mermaid. If you can move your arm or your hand, or express yourself no matter how minimally: you can dance.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:13):
Hello and welcome to In Plain Sight, a program where
we highlight people who are making a positive impact in
the community and disability sector.
S2 (00:21):
Shining a light on those who would be otherwise hidden
in plain sight.
S1 (00:25):
And it's a pleasure to bring you these stories on
a weekly basis with you here on Vision Australia Radio.
Today we're presenting a series of compilations of selected in
Plain Sight programs from this year. Today we'll hear excerpts
from an April program. My name is Kerry, not the
girl in the wheelchair, where Simon spoke with Paralympian Kerrie Duff,
(00:46):
where they discuss mentoring, leadership and equality. Then we'll hear
from an August program in which Simon spoke with dynamic
disability advocate, performer and dancer Raina Lamb. Raina shares her
stories and experiences including forming women with disabilities. Wha. I'm
really excited.
S2 (01:03):
To introduce Kerrie Duff to you. She is a pioneer
within the disability advocacy area and like many people, including myself.
We learnt our skills by firstly starting in this instance
within the sporting field and Kerri's example is swimming and
(01:26):
mine was athletics track and field. But whatever area of
expertise you have within a more leisure or recreational area,
be it dancing, be it sport or whatever it might be,
these skills can be transferred into a professional area and
as Kerri explains within her interview, it can help bring
(01:50):
confidence into a broader area of your life, not only
your personal life, but then can help lead into professional life.
So we are trying to do here in this programme
is demonstrate. Firstly, get involved with something that you're really
interested in initially, in this case something to do with
leisure or recreation or whatever it might be. And you
(02:13):
will often find that can lead into something that can
find your passions into a more of a professional area
as well. And it's a wonderful conversation we had with Kerry,
and I hope you enjoy it. Hello, Kerry.
S3 (02:29):
Hi, Simon. Thanks for having me.
S2 (02:30):
You have spina bifida, is that correct?
S3 (02:32):
That's right. Yes. I was born with spina bifida.
S2 (02:35):
So for those who don't know, including myself, what is
spina bifida and how does one acquire spina bifida?
S3 (02:41):
It's a neurological condition, and it's a condition that forms
when the baby is still forming in the mother's womb.
S2 (02:48):
Now, is it my perception, or is there less spina
bifida in the community nowadays?
S3 (02:55):
There probably is less people born with spina bifida nowadays,
partly because it's with technological advances. It can be picked
up a lot more when people do pre-screening throughout their pregnancy,
and some people tend to decide to not go ahead
with the pregnancy. Yeah, I find it a little bit
sad you can't tell the severity. Severity of the disability
(03:16):
just from being in the womb. But nowadays also it's
also possible to operate on the child.
S2 (03:22):
How has spina bifida affected you physically throughout your life?
And were those effects digressive? Would they become more as
you got older?
S3 (03:31):
When I was first born, my parents were told that
I would be in a wheelchair probably by the time
I was two. I'm now closer to 60 than I
am to 50. Might tell you how old I am. Um,
and I'm using a wheelchair. I've only been using a
wheelchair since probably I was about 50. Prior to that,
I walked on crutches and I used callipers, so the
(03:52):
spine having spina bifida did change throughout my life and
it meant that I required different assistive technology.
S2 (03:59):
Kerry, we're roughly the same age, and I remember as
a child seeing those images, especially for the fundraising events
and so on, for what we called here back those days,
the Spastic Welfare Association or the Crippled Children's Audience association
and things like that. And now that I remember those
pictures of the poor little children, they were always young
girls too, mostly with the crutches and the callipers and
(04:21):
all that kind of business. It's the unfortunate way that
those organizations used to portray people with a disability, so
they could raise money and awareness and all that type
of thing, you know?
S3 (04:32):
Yeah, I can relate to that. Simon. When I went
to special school, I had three. I had two girlfriends.
And when we moved from one location and the school
was rebuilt closer to home, the three of us had
our photos taken and there was myself standing up and
another girl sitting in a wheelchair and someone else, um,
(04:53):
on sticks. But with those high up callipers like Forrest Gump.
And then 20 years later, after the school had been
built and we'd all left school and were doing other things,
they had our photo taken again. And at that stage
I was driving. So I got my photo taken, sitting
in the front seat of my car with my hand
on the hand controls, And it just showed you the
(05:14):
difference from earlier on. Having a picture of sweet little
innocent kids, but with disabilities to pull the heartstrings, to
showing a businesswoman who drives a car and is independent.
So great society has changed a lot, which is really good.
S2 (05:31):
It has. Now, whilst you're in high school, you were
just talking about primary school, but whilst you were in
high school you started your sporting life. Is that right?
S3 (05:39):
Yes. I started competitive sporting life in high school. I'd
swum during primary school, but not competitively.
S2 (05:47):
So mainly you're a swimmer or you were a swimmer.
Tell us a little bit about that, how that progressed
and how you reached the heights of Paralympian.
S3 (05:54):
I'd always enjoyed being at the pool or at the
beach and, you know, going for a swim. And I
took up swimming classes. Probably I would have been during
primary school. And then by the time I got to
high school, I joined a swimming squad, North Lodge Neptunes,
which was run by a past Olympian who was in
(06:18):
the water polo in 1950 something or other. Um, and yes,
I went I went along to North Lodge swimming squad
from year ten onwards, and I would swim a couple
of times during the week and on the weekends, and
I'd get involved in the local competitions, but at that
stage I was swimming against younger kids, and then I
(06:42):
found sports and recreation for disabled children, and I became competitive,
getting involved in competitions with other kids with disabilities. And
it was a lot more equal because there you have classifications.
So it's based on functional ability, kind of a bit
like NDIS is. And so I would be swimming against
someone who had similar disability to me, or they might
(07:05):
have cerebral palsy or another disability, but they have the
same muscle tone and ability.
S2 (07:09):
When did you start doing serious competitive swimming?
S3 (07:13):
My first competition was in Adelaide with the first junior games.
That was in year ten and they were more games
where it was based on participating. But I'd run quite
a few of my swimming events and I was selected,
along with three other Victorians, to be part of the
Australian team of 20 kids that went over to England,
(07:35):
and that was for the first invitational disabled Junior Games
held at Stoke Mandeville. And from there, when I came back,
I was invited to go to the the seniors because
by then I was like about 15. And from the
first nationals, I was chosen to go to the Far
East and South Pacific International competition, which is equivalent to
(07:56):
Commonwealth Games, if you think of it in those sort
of terms. And they were actually held in Hong Kong.
So I had the experience of flying to Hong Kong,
having a track coach there who was working with the
track athletes, but he was also a biology teacher, so
he was testing me on my biology because I had
exams when I got back. So I was sort of
(08:18):
combining schoolwork and study with getting involved in sport.
S2 (08:21):
Yeah.
S3 (08:21):
Um, but yeah, going to Beijing was amazing because it
exposed me to a whole lot of people of all
different abilities.
S2 (08:27):
And what year was that going to Beijing?
S3 (08:28):
That was in 82.
S2 (08:29):
Tell us, what was the pinnacle of your swimming career?
S3 (08:33):
Uh, the pinnacle, no doubt, would be winning a bronze
in the 400m freestyle at the 1984 Paralympics. They were
also held in England. And there I did a personal
best time of 11 seconds. So when you talk about swimming,
normally people talk about 100th of a second. So, um,
to improve my time by that much was was pretty awesome.
(08:57):
And when I came back to Australia, I found that
a lot of people were saying, oh, are you going
to try for silver or are you going to try
for gold? And I'm thinking, well, hang on, I've just
done a PB and I've represented Australia. What more do
you want me to do?
S2 (09:09):
I saw a quote from you, Kerry, that said your
swimming career and the success that you had in your
swimming career, was a great launching pad and a great
place for you to start and give you the confidence
to be the successful person that you are. You want
to expand on that?
S3 (09:26):
Yeah, basically through doing sport, I did increase my confidence.
I was exposed to a lot more people from various backgrounds,
and I was also fortunate to have a lot of
mentors and sort of like peer support during that time.
Prior to getting involved in sport, I was kind of
in a bit of a no man's land because it
was only like myself with a disability at school. So,
(09:46):
you know, no one else I could bounce ideas off.
So I was sort of like the different person, the
other person. But with the sport, I found that I
was in a position where I would go to schools
and talk about what I was going to do when
I went to a competition. And then when I came back,
I'd bring medals and I'd go back to the school
and have a chat in the assembly. I'd speak to
a rotary group. So to do that and feel confident,
(10:08):
I had to join. I chose to join Toastmasters, which
improved my public speaking and got me to see how
you can sort of form a speech and, you know,
insert a little bit of humor into it and different
things like that. And also through being involved in sport,
I was then given a lot of other opportunities. Like recently,
(10:29):
I've been involved in putting together some training manuals for
sporting groups that are interested and keen to involve more
people with disabilities in their club. We've put together some manuals, um,
with Paralympics Australia and Disabled Sports Australia, and that's something that,
you know, once upon a time I never would have
thought that I'd be involved in that.
S2 (10:50):
So you just mentioned the word mentor there. I like
to encourage people to seek out mentors and role models
and to demonstrate it, because it's such a great avenue
of building one's confidence and then to share that confidence
with others. Now, you like to now help mentor other
people in the different areas of your your work that
(11:12):
you've done over the years. Is that right, Kerry?
S3 (11:14):
Yes. Yeah. I guess throughout life I've. I've kind of
been at the I mean, there were people born with
spina bifida prior to me, but a lot of the
kids that were born prior to the 60s, they didn't
sort of flourish and succeed to the extent that kids
born after that had the opportunity to with, with medical
advances and society sort of becoming more welcoming and more inclusive. Slowly, slowly,
(11:37):
slowly over time, whilst I looked up to 1 or
2 people when I was growing up. As I've got older,
I've been involved in groups like the Spina Bifida Association
of Victoria, where I was born, and then when I
moved to WA, um, SBA, WA and through that been
able to provide programs like summer camps and leadership courses,
(12:02):
where people have been able to sort of get to
meet other people with similar disabilities or or people without
without disabilities or people with differing disabilities and just compare
ideas and troubleshoot ways of negotiating life.
S2 (12:16):
You've mentioned what motivated you because your parents instilled that
quality within you to want to give back to the community.
But I'm always curious. I was just talking about role
models and mentoring. What you would say to a young
person with a disability, a physical disability, to encourage them
to take up positions of leadership.
S3 (12:36):
I guess from my swimming days, I learned to set
goals and like incremental ones. So if you'd like to
be involved in a board, work out what it is
that you need beforehand. So like when I was involved
with women with Disabilities Australia, we had leadership groups where
people could get together and learn the skills that you need. So,
(12:57):
you know, find a mentor. Don't don't be afraid to
go and ask somebody if you can meet with them or,
you know, chat with them over the phone. And often,
you know, people are often willing to assist you, but
they might not know how. So if I know, it's
really scary to take that first step. But by taking
that first step and celebrating that, you've actually taken that
(13:19):
first step. Because often we're really hard on ourselves. You've
got to make sure that you celebrate the wins. Yes.
Make sure that, you know, you find someone that is
doing what it is that you would like to do,
and then ask them how they got there and then,
you know, work out what it is that you need
to do. My name is Kerry. It's not the girl
in the wheelchair. So see the person first. I'm a
person just the same as someone who who doesn't walk
(13:40):
around with sticks or walk around with a cane or
push a chair.
S1 (13:46):
On Vision Australia Radio. You are listening to a special
compilation program of In Plain Sight. We've just heard the
conversation Simon had back in April with Paralympian Kerrie Duff.
And next we'll hear from an August program where Simon
spoke with dynamic disability advocate, performer and dancer Raina Lamb.
S2 (14:05):
It was a pleasure to hear from Raina, and I
really enjoyed her passions, not only within her professional life,
but also with her discovering a new way of expressing
her passion for dance. And as Rainer explains within the interview,
she's always had a love for dance, but due to
her physical disability, she found some traditional dancing a little
(14:29):
bit more difficult. But with the advent of new ways
of expressing dance and can be adapted for people with disabilities,
and we also learn that a disability, whilst it can
be limiting in so many ways, it can also be
freeing in many ways. And it's great to learn these
(14:50):
things from people like Rainer, who have been there and
done that. And it's great to learn from people like
Kerry and Rainer how important it is to not only
to be a successful individual yourself, but to then to
transfer that, to be a mentor and to encourage others
to move into those similar realms as well. Hello, Raina.
S4 (15:16):
Hello, Simon. Thanks very much for having me on the show.
S2 (15:19):
I believe that you were one of the founders of
women with disabilities in Western Australia.
S4 (15:24):
Yes, yes, I was the original founder of women with
disabilities WA. It was a not for profit organisation run
by women with disabilities for women with disabilities. And, you know,
we did a lot of, um, systemic advocacy, sort of
educating medical professionals and the general community about of let
(15:45):
me do because, you know, there's so much to do
in our community, there's advocating for for our rights and
for access to the community, educating the non-disabled community. And
just that sort of I think that informal peer support
that we all do.
S2 (16:02):
Very important.
S4 (16:03):
Basically keep each other going.
S2 (16:05):
What's the nature of your disability?
S4 (16:07):
So I have cerebral palsy. It's a neurological and physical disability.
I was born with brain damage at a very early
stage in, in, um, my gestation. So I was born
three months early in the mid 70s in New Zealand.
It was very dramatic. They thought I was going to die, um,
(16:28):
sort of thing. But it turned out that I did
live and I have cerebral palsy as a consequence, um,
which affects me mostly physically.
S2 (16:38):
Has the effects of the cerebral palsy changed since you
were young?
S4 (16:42):
Oh, yes. Yeah. They didn't know about this in the
70s and 80s. But for people with cerebral palsy, it's
not the original. Brain damage doesn't deteriorate, but our bodies
wear down quicker. So I first started seeing effects of
that in my mid to late 20s. And also another
(17:06):
thing which I'm hoping the younger generations won't have to
deal with as much is, in my generation, sort of
the Gen X people with cerebral palsy. The prevailing treatment
at the time was basically force us to be as
normal as possible and keep up with everyone else, which
(17:27):
our bodies weren't designed to do. Um, and they did
find out, you know, they did research about 20 or
30 years ago and went, oh, okay. So it turns
out that people with cerebral palsy are any of the
physical movements we do takes 2 to 3 times more
physical energy than it would for a non-disabled person. So
(17:51):
we're you know, we're operating on less energy or physical
energy all around, which is, you know, when you're young,
you don't realize this. And you just, you know, you
keep going because, you know, kids are resilient and kids,
you know, want to keep up and, um, with, with
everyone And, um, but as you know, as time has
(18:14):
gone by, that overuse of energy has meant, you know,
we get tired of, you know, a lot easier and, um,
which which is honestly, that's the bit I really don't like. Naturally,
a high energy person. And there's lots of things I
want to do, and there's lots of things I want
to say and people to talk to and, um, things
(18:34):
to explore. And my body will just get to a
point where it goes, no, you're not doing that anymore.
S2 (18:40):
How did you initially get involved with being an advocate
for people with disabilities when you were involved with women,
with disabilities, with Australia?
S4 (18:47):
Well, that actually that that was over 20 years ago now.
At the time, I think I was about 29. And
up until that age, I actually hadn't spent a lot
of time around other people with disabilities. Um, and that's
the function of, I think, my, the way my generation,
(19:08):
our generation, um, of, of people with disabilities were brought up.
It was that whole mainstreaming thing which was be part
of the wider community. So I went to a a
normal I'm saying this with the requisite quote marks normal.
I went to a standard upper school mainstreaming. There was
(19:29):
basically they sort of dropped you in it and you
had to fight and sink or swim. So I actually hadn't.
And there was I got that attitude from a very,
very young age that, you know, it was better to
be around non-disabled people and, and pretend I was not disabled,
which was kind of difficult because I was quite disabled
(19:51):
and I was very visibly disabled. And but, you know,
in the 80s, that was a very sort of, um,
you know, that that was what parents were told. And,
you know, everyone was told was, you know, treat them
like they're normal. And, well, for starters, nobody's normal. Um, every,
(20:12):
you know, we've all got our own peculiarities, but, you know,
it was that expectation that you, you know, do everything
the way non-disabled people do it, which I did. And
that was very exhausting and very difficult and very stressful.
So I didn't spend a lot. And so I was
given the message quite early that I shouldn't be around
other disabled people.
S2 (20:33):
So if you were talking to somebody with a disability
in their early teens, let's just say, what would you
tell them about the importance or otherwise of being connected
with other people with a similar disability?
S4 (20:48):
I would say it's it would make all the difference
in the world. Um, because I think all of for
all of us who are born with disabilities, uh, the
teen years were particularly bad. Puberty was horrible. Um, you know,
you get to that point where you're getting more independent
and you're looking out into the world and you're wanting
(21:08):
to be a part of the world. And. as a
young person, you don't see yourself out there, you know,
as a young disabled person, and particularly when it comes
to things like relationships, you know, and even even employment.
And it's hard. And for anyone, that period of life
(21:28):
is difficult. Um, being a teenager is horrible. You couldn't
pay me to do it again. Um, but being a
teenager with a disability means you not only have to
deal with the changes in your world, the changes in
your body, but you you get really faced with the
way the outside world sees you. And, you know, you
(21:51):
get all these really unpleasant messages which, you know, a
lot of sort of attitudes that that can be quite confronting.
And for me, I and I think a lot of
us who have very visible disabilities, we had to get
used to at a young age to that that look
(22:13):
you get from non-disabled people when you're moving around in
the world. And all I can describe is, is it
a look of revulsion? And that's really hard to cope with.
S2 (22:23):
Talking about your physical and mental health there and gender
roles and so on. Now you're part of Patrick and
Sakura's performance of The Little Mermaid. I was wondering if
you could tell us a little bit about that and
how you got involved in it, and what's your role
within that?
S4 (22:38):
A lot of people who know me say, number one,
Rayner talks a lot. Number two, Rayner loves dance and
I do. I've always loved to dance. Even before I
started using a wheelchair, I learned to waltz at school. Um,
when I was in my teens. I did struggle because
walking backwards is quite difficult when you've got bad balance. And, um,
(23:01):
dance is always something I've loved so much my whole life.
And I started off in my life walking and very
difficult walking, sort of wobbly and falling over a lot.
And then I started using a mobility scooter in my
late teens, and then I went from a mobility scooter
to an electric wheelchair. And one of the things I
(23:22):
love about using my electric wheelchair is I can spin
in circles. Yep. And I'm being very well behaved and
resisting the urge to actually demonstrate that right this very second. Yes.
S2 (23:33):
Thank you.
S4 (23:33):
But because I'm a grown up, we're doing this interview,
and I realized I can dance. Um, so there's not
a lot or. There wasn't a lot when I first
started using a wheelchair for dancing for wheelchair users in Perth.
But over the last few years, I've done ballroom dance.
(23:53):
That didn't work out very well. And then one day
I got a phone call from Sam Jenkinson and she
linked me up with Patrick. He said he was looking
for someone to dance in his ballet. Um, who had
the exact attributes I have basically wheelchair user in their 50s, uh,
(24:15):
white female, um, with an experience of family and, uh,
violence and abuse. And I went, hey, that's me. Also,
I really miss dancing because I went for a few
years without dancing because I'd gotten very sick. And, um,
so I was very happy to get back. And what
I love most about Patrick's project is it is a
(24:36):
dance project. It is a ballet that is conceived and
developed and produced by a disabled dancer, and the experience
of being taught and working with a choreographer who's disabled themselves.
It's just extraordinary. I just love working with this young
(24:59):
cast who've got an entirely different attitude towards disability and
disability rights and advocacy than our generation had, And they're
doing it so much better. They're not burning themselves out.
And Patrick's wonderful. He's really good on making sure that
people do the sustainable sustainably and don't exhaust themselves, which
(25:25):
is good because I have a tendency to push myself.
And when it's something like this that I love as
much as I love to dance. That was a bit
of a risk. But yeah, it's wonderful to see this
project come to fruition. But I don't have to educate
anyone because Patrick knows I don't have to deal with
anyone else's response to my disability. Great. No one's telling
(25:47):
me I'm inspirational or brave or how much they've learned
from me. Because honestly, at this point, I don't care
what non-disabled people learn from me. I'm not your free education, boss.
S2 (26:00):
Yeah, yeah.
S4 (26:01):
You know that you call inspirational enough and I'll spit
out some profound wisdom because I'm just. I'm just a
person like anyone else. And I just, I prefer honestly,
at this point, I prefer being around other disabled people
because we can just be ourselves and we don't have
to be brave or no, you know, and we and
(26:22):
we can just be dickheads together and be silly or
just relax.
S2 (26:29):
What sort of things would you like to tell other
people with disabilities, especially if they're new to their disability
or are still learning how to live within the disability world?
S4 (26:40):
Oh yes, very much so. Looking back, one thing I
wish I knew, and people did tell me this, but
I didn't listen. Um, but I would really like younger
people or newer people with disabilities to know that you
can rest. You don't have to be doing things all
the time. You don't have to meet the non-disabled world's
(27:03):
expectations of what how much you should be doing rest,
because otherwise you burn out. And I did that. And
so many of the people I know, we both know
have burnt out at various points, and that's why we stopped.
But rest and also find the thing that makes you
really happy. Yes. And do it. I was very, very
(27:26):
depressed and very sad for a long time. But my
joy in life, as everyone knows, is is dance. So
we've got to do things that give us joy. Don't
just try and be a crappy version of a non-disabled person.
Be a fabulous.
S1 (27:43):
We hope you've enjoyed revisiting these programs in this compilation
series of In Plain Sight. Join us at the same
time next week on Vision Australia Radio, VA radio, digital
and online at Radio.com. You can also listen on demand
by searching for In Plain Sight by Vision Australia Radio.
Thanks for listening.
S2 (28:04):
Thank you.
Hello and welcome to In Plain Sight, a program where
we highlight people who are making a positive impact in
the community and disability sector.
S2 (00:21):
Shining a light on those who would be otherwise hidden
in plain sight.
S1 (00:25):
And it's a pleasure to bring you these stories on
a weekly basis with you here on Vision Australia Radio.
Today we're presenting a series of compilations of selected in
Plain Sight programs from this year. Today we'll hear excerpts
from an April program. My name is Kerry, not the
girl in the wheelchair, where Simon spoke with Paralympian Kerrie Duff,
(00:46):
where they discuss mentoring, leadership and equality. Then we'll hear
from an August program in which Simon spoke with dynamic
disability advocate, performer and dancer Raina Lamb. Raina shares her
stories and experiences including forming women with disabilities. Wha. I'm
really excited.
S2 (01:03):
To introduce Kerrie Duff to you. She is a pioneer
within the disability advocacy area and like many people, including myself.
We learnt our skills by firstly starting in this instance
within the sporting field and Kerri's example is swimming and
(01:26):
mine was athletics track and field. But whatever area of
expertise you have within a more leisure or recreational area,
be it dancing, be it sport or whatever it might be,
these skills can be transferred into a professional area and
as Kerri explains within her interview, it can help bring
(01:50):
confidence into a broader area of your life, not only
your personal life, but then can help lead into professional life.
So we are trying to do here in this programme
is demonstrate. Firstly, get involved with something that you're really
interested in initially, in this case something to do with
leisure or recreation or whatever it might be. And you
(02:13):
will often find that can lead into something that can
find your passions into a more of a professional area
as well. And it's a wonderful conversation we had with Kerry,
and I hope you enjoy it. Hello, Kerry.
S3 (02:29):
Hi, Simon. Thanks for having me.
S2 (02:30):
You have spina bifida, is that correct?
S3 (02:32):
That's right. Yes. I was born with spina bifida.
S2 (02:35):
So for those who don't know, including myself, what is
spina bifida and how does one acquire spina bifida?
S3 (02:41):
It's a neurological condition, and it's a condition that forms
when the baby is still forming in the mother's womb.
S2 (02:48):
Now, is it my perception, or is there less spina
bifida in the community nowadays?
S3 (02:55):
There probably is less people born with spina bifida nowadays,
partly because it's with technological advances. It can be picked
up a lot more when people do pre-screening throughout their pregnancy,
and some people tend to decide to not go ahead
with the pregnancy. Yeah, I find it a little bit
sad you can't tell the severity. Severity of the disability
(03:16):
just from being in the womb. But nowadays also it's
also possible to operate on the child.
S2 (03:22):
How has spina bifida affected you physically throughout your life?
And were those effects digressive? Would they become more as
you got older?
S3 (03:31):
When I was first born, my parents were told that
I would be in a wheelchair probably by the time
I was two. I'm now closer to 60 than I
am to 50. Might tell you how old I am. Um,
and I'm using a wheelchair. I've only been using a
wheelchair since probably I was about 50. Prior to that,
I walked on crutches and I used callipers, so the
(03:52):
spine having spina bifida did change throughout my life and
it meant that I required different assistive technology.
S2 (03:59):
Kerry, we're roughly the same age, and I remember as
a child seeing those images, especially for the fundraising events
and so on, for what we called here back those days,
the Spastic Welfare Association or the Crippled Children's Audience association
and things like that. And now that I remember those
pictures of the poor little children, they were always young
girls too, mostly with the crutches and the callipers and
(04:21):
all that kind of business. It's the unfortunate way that
those organizations used to portray people with a disability, so
they could raise money and awareness and all that type
of thing, you know?
S3 (04:32):
Yeah, I can relate to that. Simon. When I went
to special school, I had three. I had two girlfriends.
And when we moved from one location and the school
was rebuilt closer to home, the three of us had
our photos taken and there was myself standing up and
another girl sitting in a wheelchair and someone else, um,
(04:53):
on sticks. But with those high up callipers like Forrest Gump.
And then 20 years later, after the school had been
built and we'd all left school and were doing other things,
they had our photo taken again. And at that stage
I was driving. So I got my photo taken, sitting
in the front seat of my car with my hand
on the hand controls, And it just showed you the
(05:14):
difference from earlier on. Having a picture of sweet little
innocent kids, but with disabilities to pull the heartstrings, to
showing a businesswoman who drives a car and is independent.
So great society has changed a lot, which is really good.
S2 (05:31):
It has. Now, whilst you're in high school, you were
just talking about primary school, but whilst you were in
high school you started your sporting life. Is that right?
S3 (05:39):
Yes. I started competitive sporting life in high school. I'd
swum during primary school, but not competitively.
S2 (05:47):
So mainly you're a swimmer or you were a swimmer.
Tell us a little bit about that, how that progressed
and how you reached the heights of Paralympian.
S3 (05:54):
I'd always enjoyed being at the pool or at the
beach and, you know, going for a swim. And I
took up swimming classes. Probably I would have been during
primary school. And then by the time I got to
high school, I joined a swimming squad, North Lodge Neptunes,
which was run by a past Olympian who was in
(06:18):
the water polo in 1950 something or other. Um, and yes,
I went I went along to North Lodge swimming squad
from year ten onwards, and I would swim a couple
of times during the week and on the weekends, and
I'd get involved in the local competitions, but at that
stage I was swimming against younger kids, and then I
(06:42):
found sports and recreation for disabled children, and I became competitive,
getting involved in competitions with other kids with disabilities. And
it was a lot more equal because there you have classifications.
So it's based on functional ability, kind of a bit
like NDIS is. And so I would be swimming against
someone who had similar disability to me, or they might
(07:05):
have cerebral palsy or another disability, but they have the
same muscle tone and ability.
S2 (07:09):
When did you start doing serious competitive swimming?
S3 (07:13):
My first competition was in Adelaide with the first junior games.
That was in year ten and they were more games
where it was based on participating. But I'd run quite
a few of my swimming events and I was selected,
along with three other Victorians, to be part of the
Australian team of 20 kids that went over to England,
(07:35):
and that was for the first invitational disabled Junior Games
held at Stoke Mandeville. And from there, when I came back,
I was invited to go to the the seniors because
by then I was like about 15. And from the
first nationals, I was chosen to go to the Far
East and South Pacific International competition, which is equivalent to
(07:56):
Commonwealth Games, if you think of it in those sort
of terms. And they were actually held in Hong Kong.
So I had the experience of flying to Hong Kong,
having a track coach there who was working with the
track athletes, but he was also a biology teacher, so
he was testing me on my biology because I had
exams when I got back. So I was sort of
(08:18):
combining schoolwork and study with getting involved in sport.
S2 (08:21):
Yeah.
S3 (08:21):
Um, but yeah, going to Beijing was amazing because it
exposed me to a whole lot of people of all
different abilities.
S2 (08:27):
And what year was that going to Beijing?
S3 (08:28):
That was in 82.
S2 (08:29):
Tell us, what was the pinnacle of your swimming career?
S3 (08:33):
Uh, the pinnacle, no doubt, would be winning a bronze
in the 400m freestyle at the 1984 Paralympics. They were
also held in England. And there I did a personal
best time of 11 seconds. So when you talk about swimming,
normally people talk about 100th of a second. So, um,
to improve my time by that much was was pretty awesome.
(08:57):
And when I came back to Australia, I found that
a lot of people were saying, oh, are you going
to try for silver or are you going to try
for gold? And I'm thinking, well, hang on, I've just
done a PB and I've represented Australia. What more do
you want me to do?
S2 (09:09):
I saw a quote from you, Kerry, that said your
swimming career and the success that you had in your
swimming career, was a great launching pad and a great
place for you to start and give you the confidence
to be the successful person that you are. You want
to expand on that?
S3 (09:26):
Yeah, basically through doing sport, I did increase my confidence.
I was exposed to a lot more people from various backgrounds,
and I was also fortunate to have a lot of
mentors and sort of like peer support during that time.
Prior to getting involved in sport, I was kind of
in a bit of a no man's land because it
was only like myself with a disability at school. So,
(09:46):
you know, no one else I could bounce ideas off.
So I was sort of like the different person, the
other person. But with the sport, I found that I
was in a position where I would go to schools
and talk about what I was going to do when
I went to a competition. And then when I came back,
I'd bring medals and I'd go back to the school
and have a chat in the assembly. I'd speak to
a rotary group. So to do that and feel confident,
(10:08):
I had to join. I chose to join Toastmasters, which
improved my public speaking and got me to see how
you can sort of form a speech and, you know,
insert a little bit of humor into it and different
things like that. And also through being involved in sport,
I was then given a lot of other opportunities. Like recently,
(10:29):
I've been involved in putting together some training manuals for
sporting groups that are interested and keen to involve more
people with disabilities in their club. We've put together some manuals, um,
with Paralympics Australia and Disabled Sports Australia, and that's something that,
you know, once upon a time I never would have
thought that I'd be involved in that.
S2 (10:50):
So you just mentioned the word mentor there. I like
to encourage people to seek out mentors and role models
and to demonstrate it, because it's such a great avenue
of building one's confidence and then to share that confidence
with others. Now, you like to now help mentor other
people in the different areas of your your work that
(11:12):
you've done over the years. Is that right, Kerry?
S3 (11:14):
Yes. Yeah. I guess throughout life I've. I've kind of
been at the I mean, there were people born with
spina bifida prior to me, but a lot of the
kids that were born prior to the 60s, they didn't
sort of flourish and succeed to the extent that kids
born after that had the opportunity to with, with medical
advances and society sort of becoming more welcoming and more inclusive. Slowly, slowly,
(11:37):
slowly over time, whilst I looked up to 1 or
2 people when I was growing up. As I've got older,
I've been involved in groups like the Spina Bifida Association
of Victoria, where I was born, and then when I
moved to WA, um, SBA, WA and through that been
able to provide programs like summer camps and leadership courses,
(12:02):
where people have been able to sort of get to
meet other people with similar disabilities or or people without
without disabilities or people with differing disabilities and just compare
ideas and troubleshoot ways of negotiating life.
S2 (12:16):
You've mentioned what motivated you because your parents instilled that
quality within you to want to give back to the community.
But I'm always curious. I was just talking about role
models and mentoring. What you would say to a young
person with a disability, a physical disability, to encourage them
to take up positions of leadership.
S3 (12:36):
I guess from my swimming days, I learned to set
goals and like incremental ones. So if you'd like to
be involved in a board, work out what it is
that you need beforehand. So like when I was involved
with women with Disabilities Australia, we had leadership groups where
people could get together and learn the skills that you need. So,
(12:57):
you know, find a mentor. Don't don't be afraid to
go and ask somebody if you can meet with them or,
you know, chat with them over the phone. And often,
you know, people are often willing to assist you, but
they might not know how. So if I know, it's
really scary to take that first step. But by taking
that first step and celebrating that, you've actually taken that
(13:19):
first step. Because often we're really hard on ourselves. You've
got to make sure that you celebrate the wins. Yes.
Make sure that, you know, you find someone that is
doing what it is that you would like to do,
and then ask them how they got there and then,
you know, work out what it is that you need
to do. My name is Kerry. It's not the girl
in the wheelchair. So see the person first. I'm a
person just the same as someone who who doesn't walk
(13:40):
around with sticks or walk around with a cane or
push a chair.
S1 (13:46):
On Vision Australia Radio. You are listening to a special
compilation program of In Plain Sight. We've just heard the
conversation Simon had back in April with Paralympian Kerrie Duff.
And next we'll hear from an August program where Simon
spoke with dynamic disability advocate, performer and dancer Raina Lamb.
S2 (14:05):
It was a pleasure to hear from Raina, and I
really enjoyed her passions, not only within her professional life,
but also with her discovering a new way of expressing
her passion for dance. And as Rainer explains within the interview,
she's always had a love for dance, but due to
her physical disability, she found some traditional dancing a little
(14:29):
bit more difficult. But with the advent of new ways
of expressing dance and can be adapted for people with disabilities,
and we also learn that a disability, whilst it can
be limiting in so many ways, it can also be
freeing in many ways. And it's great to learn these
(14:50):
things from people like Rainer, who have been there and
done that. And it's great to learn from people like
Kerry and Rainer how important it is to not only
to be a successful individual yourself, but to then to
transfer that, to be a mentor and to encourage others
to move into those similar realms as well. Hello, Raina.
S4 (15:16):
Hello, Simon. Thanks very much for having me on the show.
S2 (15:19):
I believe that you were one of the founders of
women with disabilities in Western Australia.
S4 (15:24):
Yes, yes, I was the original founder of women with
disabilities WA. It was a not for profit organisation run
by women with disabilities for women with disabilities. And, you know,
we did a lot of, um, systemic advocacy, sort of
educating medical professionals and the general community about of let
(15:45):
me do because, you know, there's so much to do
in our community, there's advocating for for our rights and
for access to the community, educating the non-disabled community. And
just that sort of I think that informal peer support
that we all do.
S2 (16:02):
Very important.
S4 (16:03):
Basically keep each other going.
S2 (16:05):
What's the nature of your disability?
S4 (16:07):
So I have cerebral palsy. It's a neurological and physical disability.
I was born with brain damage at a very early
stage in, in, um, my gestation. So I was born
three months early in the mid 70s in New Zealand.
It was very dramatic. They thought I was going to die, um,
(16:28):
sort of thing. But it turned out that I did
live and I have cerebral palsy as a consequence, um,
which affects me mostly physically.
S2 (16:38):
Has the effects of the cerebral palsy changed since you
were young?
S4 (16:42):
Oh, yes. Yeah. They didn't know about this in the
70s and 80s. But for people with cerebral palsy, it's
not the original. Brain damage doesn't deteriorate, but our bodies
wear down quicker. So I first started seeing effects of
that in my mid to late 20s. And also another
(17:06):
thing which I'm hoping the younger generations won't have to
deal with as much is, in my generation, sort of
the Gen X people with cerebral palsy. The prevailing treatment
at the time was basically force us to be as
normal as possible and keep up with everyone else, which
(17:27):
our bodies weren't designed to do. Um, and they did
find out, you know, they did research about 20 or
30 years ago and went, oh, okay. So it turns
out that people with cerebral palsy are any of the
physical movements we do takes 2 to 3 times more
physical energy than it would for a non-disabled person. So
(17:51):
we're you know, we're operating on less energy or physical
energy all around, which is, you know, when you're young,
you don't realize this. And you just, you know, you
keep going because, you know, kids are resilient and kids,
you know, want to keep up and, um, with, with
everyone And, um, but as you know, as time has
(18:14):
gone by, that overuse of energy has meant, you know,
we get tired of, you know, a lot easier and, um,
which which is honestly, that's the bit I really don't like. Naturally,
a high energy person. And there's lots of things I
want to do, and there's lots of things I want
to say and people to talk to and, um, things
(18:34):
to explore. And my body will just get to a
point where it goes, no, you're not doing that anymore.
S2 (18:40):
How did you initially get involved with being an advocate
for people with disabilities when you were involved with women,
with disabilities, with Australia?
S4 (18:47):
Well, that actually that that was over 20 years ago now.
At the time, I think I was about 29. And
up until that age, I actually hadn't spent a lot
of time around other people with disabilities. Um, and that's
the function of, I think, my, the way my generation,
(19:08):
our generation, um, of, of people with disabilities were brought up.
It was that whole mainstreaming thing which was be part
of the wider community. So I went to a a
normal I'm saying this with the requisite quote marks normal.
I went to a standard upper school mainstreaming. There was
(19:29):
basically they sort of dropped you in it and you
had to fight and sink or swim. So I actually hadn't.
And there was I got that attitude from a very,
very young age that, you know, it was better to
be around non-disabled people and, and pretend I was not disabled,
which was kind of difficult because I was quite disabled
(19:51):
and I was very visibly disabled. And but, you know,
in the 80s, that was a very sort of, um,
you know, that that was what parents were told. And,
you know, everyone was told was, you know, treat them
like they're normal. And, well, for starters, nobody's normal. Um, every,
(20:12):
you know, we've all got our own peculiarities, but, you know,
it was that expectation that you, you know, do everything
the way non-disabled people do it, which I did. And
that was very exhausting and very difficult and very stressful.
So I didn't spend a lot. And so I was
given the message quite early that I shouldn't be around
other disabled people.
S2 (20:33):
So if you were talking to somebody with a disability
in their early teens, let's just say, what would you
tell them about the importance or otherwise of being connected
with other people with a similar disability?
S4 (20:48):
I would say it's it would make all the difference
in the world. Um, because I think all of for
all of us who are born with disabilities, uh, the
teen years were particularly bad. Puberty was horrible. Um, you know,
you get to that point where you're getting more independent
and you're looking out into the world and you're wanting
(21:08):
to be a part of the world. And. as a
young person, you don't see yourself out there, you know,
as a young disabled person, and particularly when it comes
to things like relationships, you know, and even even employment.
And it's hard. And for anyone, that period of life
(21:28):
is difficult. Um, being a teenager is horrible. You couldn't
pay me to do it again. Um, but being a
teenager with a disability means you not only have to
deal with the changes in your world, the changes in
your body, but you you get really faced with the
way the outside world sees you. And, you know, you
(21:51):
get all these really unpleasant messages which, you know, a
lot of sort of attitudes that that can be quite confronting.
And for me, I and I think a lot of
us who have very visible disabilities, we had to get
used to at a young age to that that look
(22:13):
you get from non-disabled people when you're moving around in
the world. And all I can describe is, is it
a look of revulsion? And that's really hard to cope with.
S2 (22:23):
Talking about your physical and mental health there and gender
roles and so on. Now you're part of Patrick and
Sakura's performance of The Little Mermaid. I was wondering if
you could tell us a little bit about that and
how you got involved in it, and what's your role
within that?
S4 (22:38):
A lot of people who know me say, number one,
Rayner talks a lot. Number two, Rayner loves dance and
I do. I've always loved to dance. Even before I
started using a wheelchair, I learned to waltz at school. Um,
when I was in my teens. I did struggle because
walking backwards is quite difficult when you've got bad balance. And, um,
(23:01):
dance is always something I've loved so much my whole life.
And I started off in my life walking and very
difficult walking, sort of wobbly and falling over a lot.
And then I started using a mobility scooter in my
late teens, and then I went from a mobility scooter
to an electric wheelchair. And one of the things I
(23:22):
love about using my electric wheelchair is I can spin
in circles. Yep. And I'm being very well behaved and
resisting the urge to actually demonstrate that right this very second. Yes.
S2 (23:33):
Thank you.
S4 (23:33):
But because I'm a grown up, we're doing this interview,
and I realized I can dance. Um, so there's not
a lot or. There wasn't a lot when I first
started using a wheelchair for dancing for wheelchair users in Perth.
But over the last few years, I've done ballroom dance.
(23:53):
That didn't work out very well. And then one day
I got a phone call from Sam Jenkinson and she
linked me up with Patrick. He said he was looking
for someone to dance in his ballet. Um, who had
the exact attributes I have basically wheelchair user in their 50s, uh,
(24:15):
white female, um, with an experience of family and, uh,
violence and abuse. And I went, hey, that's me. Also,
I really miss dancing because I went for a few
years without dancing because I'd gotten very sick. And, um,
so I was very happy to get back. And what
I love most about Patrick's project is it is a
(24:36):
dance project. It is a ballet that is conceived and
developed and produced by a disabled dancer, and the experience
of being taught and working with a choreographer who's disabled themselves.
It's just extraordinary. I just love working with this young
(24:59):
cast who've got an entirely different attitude towards disability and
disability rights and advocacy than our generation had, And they're
doing it so much better. They're not burning themselves out.
And Patrick's wonderful. He's really good on making sure that
people do the sustainable sustainably and don't exhaust themselves, which
(25:25):
is good because I have a tendency to push myself.
And when it's something like this that I love as
much as I love to dance. That was a bit
of a risk. But yeah, it's wonderful to see this
project come to fruition. But I don't have to educate
anyone because Patrick knows I don't have to deal with
anyone else's response to my disability. Great. No one's telling
(25:47):
me I'm inspirational or brave or how much they've learned
from me. Because honestly, at this point, I don't care
what non-disabled people learn from me. I'm not your free education, boss.
S2 (26:00):
Yeah, yeah.
S4 (26:01):
You know that you call inspirational enough and I'll spit
out some profound wisdom because I'm just. I'm just a
person like anyone else. And I just, I prefer honestly,
at this point, I prefer being around other disabled people
because we can just be ourselves and we don't have
to be brave or no, you know, and we and
(26:22):
we can just be dickheads together and be silly or
just relax.
S2 (26:29):
What sort of things would you like to tell other
people with disabilities, especially if they're new to their disability
or are still learning how to live within the disability world?
S4 (26:40):
Oh yes, very much so. Looking back, one thing I
wish I knew, and people did tell me this, but
I didn't listen. Um, but I would really like younger
people or newer people with disabilities to know that you
can rest. You don't have to be doing things all
the time. You don't have to meet the non-disabled world's
(27:03):
expectations of what how much you should be doing rest,
because otherwise you burn out. And I did that. And
so many of the people I know, we both know
have burnt out at various points, and that's why we stopped.
But rest and also find the thing that makes you
really happy. Yes. And do it. I was very, very
(27:26):
depressed and very sad for a long time. But my
joy in life, as everyone knows, is is dance. So
we've got to do things that give us joy. Don't
just try and be a crappy version of a non-disabled person.
Be a fabulous.
S1 (27:43):
We hope you've enjoyed revisiting these programs in this compilation
series of In Plain Sight. Join us at the same
time next week on Vision Australia Radio, VA radio, digital
and online at Radio.com. You can also listen on demand
by searching for In Plain Sight by Vision Australia Radio.
Thanks for listening.
S2 (28:04):
Thank you.
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