April 8, 2025 • 28 mins
Meningococcal septicaemia left Lisa Burnette a double amputee at 24, but today, it’s the least impacting part of her life. In this episode, we focus on Lisa's work as a Clinical Information Nurse and volunteer disability advocate. She shares her experiences volunteering across various areas and what volunteering means to her.
Link to Lisa’s book “Learning to Walk”: https://lisaburnette.com.au
Support Vision Australia Radio: https://www.visionaustralia.org/donate
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:05):
Hi I'm Abby.
S2 (00:07):
I'm Simon, and welcome to. In Plain Sight, a program
where we highlight people who are making a positive impact
within their community and the disability sector.
S1 (00:16):
Shining a light on those who might otherwise be hidden
in plain sight.
S2 (00:21):
And we share these stories on a weekly basis with
you here on Vision Australia Radio. Hi, Abby.
S1 (00:27):
Hi, Simon. How are you?
S2 (00:28):
I'm very well, thank you. Looking forward to another week
ahead and had a good week so far. Now, Abby,
this week we will be talking to Lisa Burnett who
does a lot of voluntary work, and I met her
whilst she was doing some voluntary work for people with
disabilities in Western Australia. And I'm wondering, Abby, have you
ever done any voluntary work?
S1 (00:49):
Yes, I have uh, when I was in high school,
I volunteered for Vinnies, otherwise known as Saint Vincent de Paul,
which was a club that we, in the most basic sense,
raise money for the homeless. I even did the change
Turns out in the city many years ago now, and
we organized at school a winter sleep out which was
(01:09):
supposed to mimic. Yeah, it was supposed to mimic what
it was like as best you could. Anyway, being homeless
out in the city and Perth. And so people would
donate money and we would have speakers come and speak
to the students and you would have to sleep in
sleeping bags. So we did get some comforts, but there
was no mattresses and it was still pretty cold.
S2 (01:28):
To remind people out there that we here at Vision
Australia Radio are all volunteers, and we provide this service
at Vision Australia Radio because we enjoy doing it and
we think it's a valuable service and we like to
contribute to society by helping out. Now, both Abby and
I have different reasons why we have chosen to be
(01:49):
volunteers within this particular role. And for myself, I have
always wanted to be a radio presenter and I initially
wanted to be a fancy music DJ. But here I
am talking to people because I love talking to people
and I like meeting people. But I've done lots of
volunteer work over the years, which has been a controversial
(02:10):
thing in the disability sector, because sometimes people in the
disability world get overused as volunteers instead of being taken
up for paid positions. But our society here in Australia
probably couldn't exist in a successful way that it does
without volunteers, because there are people volunteering every kind of
(02:31):
role you can ever imagine.
S1 (02:32):
Yeah. In 2020, it was estimated that over 5 million
people were volunteering through a group or organisation, and I
can only guess that that number is about the same now,
if not has increased.
S2 (02:46):
The reason we're talking about this is because there's so
many people like our guests that we'll speak to later on, Lisa,
who do such valuable work in the community. Where would
we be without volunteers? And I'd like to thank Vision
Australia Radio for the opportunity for giving me this chance
to be a volunteer on their radio station. So, Abby,
(03:08):
what skills or knowledge do you think you learnt from
that volunteering experience that you had?
S1 (03:14):
I think a big part of it was community. I
really enjoyed it. I did it with my best friends.
S2 (03:19):
But what I would like to say about volunteer work too,
there's a whole bunch of reasons why we do it,
and one of the reasons is, is to gain valuable
skills very beneficial for us personally, and that can help
lead us into paid work in some areas as well.
S1 (03:35):
Yeah, you learn. You learn a lot. Like even me
being volunteering with Vision Australia for maybe six months I
think now and I've learnt a lot. You know, I'm
learning how to schedule management, even, um, interviewing with guests. Um,
I've learned how to use the podcasting studio and the
sound board, and you just interconnect and meet so many
(03:58):
different people in the community. And yeah, it's really beneficial
I think.
S2 (04:02):
And you mentioned the word community there. And that's a
really important aspect of what we're doing here. And it's
a big thing that I like to harp about is community.
When we do volunteer work, we become part of a
community and we have a sense of belonging. So helping
out as a volunteer can help you find that sense
(04:22):
of belonging and give you a sense of purpose and direction.
S1 (04:27):
100%. And the woman that we're speaking to today, she
she is amazing. She volunteers across so many different areas
while also having a family and working full time.
S2 (04:39):
It's one of those things where sometimes the busiest people
find the ways of doing more and more stuff, and
I find that really fabulous.
S1 (04:47):
Yeah, exactly. And today we'll be speaking to Lisa Burnett,
a clinical information nurse and volunteer disability advocate, and we'll
hear from Lisa now. Up.
S2 (04:58):
Hi, Lisa. How are you going?
S3 (04:59):
Hi, Simon. I'm great. Thanks for having me.
S2 (05:02):
It's good to see you today. It's great that you
could join us here in the studio at Vision Australia Radio. Now,
tell us, what is your job title that you are
currently doing at that hospital?
S3 (05:11):
My role is called Clinical Information Support Nurse, which nobody
really understands what I exactly do, but I advocate and
support our clinicians across the hospital when they're using our
IT systems that require them to use them for clinical data.
So it's a combination of helping with problem solving and
(05:33):
troubleshooting and rolling out new systems and supporting the systems.
S4 (05:36):
How did you.
S2 (05:37):
Transition from being a regular nurse? If I could use
that terminology to doing the kind of role that you're
doing now.
S3 (05:44):
So when I was 24, I was doing my big
overseas experience in the UK. I was working at a
hospital in London in a dialysis unit, and I caught
meningococcal disease. Yeah, so I was a baby nurse at
that stage. Um, in the sense that I'd sort of
been nursing for 5 or 6 years, but I had
(06:04):
to take a complete career change. Um, because I lost
my legs as a result of the meningococcal disease and
spent about 18 months off work. So that was when
my volunteer career started, in fact, because I didn't want
to take on any commitments around paid work. But I
also had to reconsider my career. Um, so for about
(06:27):
ten years, I had the opportunity to go back to
my old hospital, um, at Royal Perth, and do research
in the department that I'd been in. And from that
I kind of morphed into it, and I haven't left,
which happens a lot in it.
S2 (06:41):
Now, initially you said you had 18 months off work,
which to me sounds like a very short time. And
I find all that, um, fascinating and quite amazing. Can
you firstly tell us about meningococcal and how, um, what
it is? Because a lot of us won't know what
(07:01):
that means and how that looked for you at that time.
And when was that? When you were diagnosed with that?
S3 (07:08):
So that was back in 2000. Meningococcal is a bacteria
that lives in the back of the throat of about 10%
of the population, and it moves around. So like all bacteria,
most people they think are probably already immune to becoming
ill with the disease in the sense that your immune
system would fight it off. In some cases, the bacteria
(07:29):
can get across what they call the blood brain barrier
and get into the meninges and cause meningitis, and then
it can also cause septicaemia. So I had the septicaemia,
which is sort of the worst case scenario. Your life
expectancy or prognosis is quite low because of how quickly
(07:50):
the disease moves. So if you get caught early, then
you come out with relatively few side effects. I was
taken to hospital because my partner found me semi-conscious after
a night and he called the ambulance. So I then
spent about two weeks in ICU, but by then the
blood leaking into the tissues that occurs from the bacteria
(08:14):
meningococcal it attacks all the blood vessels had done so
much damage that I ended up losing both my legs
below the knee, and I've had quite a lot of
split skin grafts on my arms.
S2 (08:24):
Wow.
S3 (08:25):
So it was quite a long recovery. I spent four
months in hospital in London, and then I was ready
for thinking about prosthetic legs, at which time they shipped
me off back to Australia to start my really what
they call rehabilitation.
S2 (08:38):
Gosh, that's a very traumatic end to your big adventure
in London there.
S3 (08:43):
And it totally changed what I thought I was going
to do with my life, because I had big plans
for more travelling to work up north in Aboriginal communities
and do more of that type of nursing, but instead
ended up much more metropolitan based. While I managed all
the challenges, as you know, associated with having a disability
and recovering.
S2 (09:03):
Just to backtrack a little bit, how did you become
interested in being a nurse and having that community spirit?
S3 (09:09):
I think when I was about five and they said,
what do you want to be when you grow up?
I always said, a nurse. I feel like my parents
kind of latched on to that because nobody in my
family had a degree, a university degree. So it became
a bit of a expectation that I would go to
uni and study. And so I guess also around the
(09:30):
time that I was growing up, the careers available to
girls back then, I mean, weren't as diverse as they
are now. It was sort of nursing teaching. You were
sort of encouraged to go in a certain direction. I
was encouraged to do nursing because I'd always have a job,
which has been absolutely true. But I've always had a
very strong interest in healthcare and the human body. And then,
(09:50):
of course, the reward that comes from helping other people.
S2 (09:54):
And what? Why? I got you into the studio to
talk with you today, Lisa, is because from the moment
I met you a few years ago now, is that
you also have a very strong and obvious passion and
desire to be an active member of the community and
in this case, an active member of the disability community.
We met while we were both working as volunteers for
(10:16):
PWD people with disabilities, Western Australia, while we were on
the Committee of Management at PWD. You were the chairperson
of that, um, board, and you were such a great
leader in that, in that role, because you were a
strong leader and you led with example, but you also
(10:39):
led with compassion. And I really appreciated that as that
I was working alongside you and in some cases, working
underneath your leadership skills. And I wanted to publicly thank
you for demonstrating great leadership there. Lisa.
S3 (10:54):
Well, thank you, Simon. I also appreciated all the support
that you gave me in the time on that committee
because I stepped into the chair role. Um, our chairperson
that I that was there when I joined only a
year before, um, stepped down and I sort of was
encouraged into the chairperson position and had to grow with
the role. So Simon was there for all of that,
(11:16):
I believe.
S2 (11:17):
Yes. Now, I find it really interesting that you went
through this quite dramatic and traumatic experience, uh, in the
year 2000 and we're in year 2025 now. And to me,
that doesn't seem that long a time. And looking at
some of the notes that you shared with me, you've
(11:39):
always been actively involved in trying to inform the public about, um,
Meningococcal disability. What it's like to be an amputee and
all these different areas of of your life. Tell us
about how that got started and why you're so keen
on doing that.
S3 (11:58):
My life in volunteering started when I was sitting around
at home doing nothing, because I was recovering and going
to the gym every day and rehabilitating. And I reached
out to a group called Amputees in Action, which was
auspiced by Megan Shand, who we all know. She, uh,
invited me onto the committee, and then I just became
(12:19):
quite involved. I think where I can see a gap,
I will fill it. And I suspect that's how I've
ended up doing so many weird and wonderful things. If
there's a gap and I. I think that I can contribute,
then I somehow end up helping out.
S2 (12:34):
And you also wrote a book. And what year was that? 2008.
Was it?
S3 (12:38):
Yeah, I published my book in 2008, but I actually
started writing it ten years before. For. I was really
glad that I waited so long to publish it. The
first sort of versions were probably more angry and frustrated,
but then over time, you know, it became a much
more full version. And I guess the reason I started
writing it was because so many people said to me,
(13:01):
you should write a book about your recovery. And in
the end I thought, well, it is quite therapeutic to
write it all down, and now there's something out in
the world that other people who are experiencing meningococcal disease
can go to. I know when I was in hospital,
it was so valuable to have other people's stories, to
sort of follow their, their, their progress and their journeys.
S2 (13:23):
What's the book called? Lisa.
S3 (13:24):
It's called Learning to Walk.
S2 (13:26):
And where can we find that book?
S3 (13:28):
Um, it's still available on Lulu.com, and they've converted it
to an ebook as well. Now.
S1 (13:34):
This week we are speaking to Lisa Burnett, Clinical Information
nurse volunteer disability advocate.
S2 (13:41):
You volunteer in a whole range of different areas because
you are an amputee, but you also volunteer within your
own community where you live. You've told me that you
volunteer as a scout for the Scouts, is that right?
S3 (13:54):
Yes. I've been chair of the Scouts committee for about
seven years now. Again, a situation where I was tapped
on the shoulder and just never really left. I keep
telling them that I really should because my kids are
almost out of scouts now, but they seem to be
quite happy with the minimal amount that I'm contributing currently.
I did do a lot of work in the first
(14:16):
sort of five years, but then of course, you do
reach a point in some of these roles where you
get to sit back and enjoy the benefits of what
you'd previously put in.
S2 (14:24):
Because I want to focus on volunteering and that whole
sense of giving back to the community and the different
communities that we belong. And you work at a hospital,
which is a busy, stressful job. You're a wife and
a mum. You have two kids? Well, all those roles
can be a very time consuming, um, pursuit, to use
(14:48):
that term. Now, I don't know how much you want
to divulge about your family situation, but I believe that
your your husband also has a disability or illness as well.
Is that right?
S3 (14:58):
Yes. So I guess I'm fortunate in a way that
my husband doesn't work. He has Parkinson's disease, so he
retired medically. About must be almost two years ago. That
does give me a little bit of extra time in
a sense, because when there are incidents, as there are
with kids, where they need to be picked up during
(15:18):
the day, or they need to be taken to activities
or pick up from school. My husband's also available to
do those things. He still drives.
S2 (15:26):
Tell us what it's like having a partner with Parkinson's disease.
S3 (15:30):
Parkinson's isn't the sort of death sentence, I guess that
it used to be, in the sense that there's a
lot of treatment available. He is about to have some
surgery which will, um, hopefully improve his symptoms. I think
the hardest thing is that the cognitive workload around managing
(15:52):
schedules and appointments and all the paperwork, which seems to
be ever increasing in modern life, does fall to me
in some ways. I don't mind doing it because I
quite enjoy all of that type of work. The more
mental load type stuff. I'm not a physical kind of person,
you know. I'm not out playing sport. Yeah.
S2 (16:13):
I did notice that I was looking up different things
on the internet the other day that on April 11th
it will be World Parkinson's Day, and Parkinson was named
after the person who found the cause of that particular
tremor disease and James Parkinson. So by the time this podcast,
(16:34):
this radio program goes out to air, it will be
nearly April 11th and it will be nearly World Parkinson's Day.
So another day of acknowledgement. And it's good to acknowledge
these things, to bring awareness. You just mentioned that you're
not a sporty person. What what do you do if
you have do you have any other spare time in
your busy life? Lisa.
S3 (16:51):
Well, my kids are getting older now, so I have
had to find hobbies again. Um, I did a lot
of cross stitch, which is a stitching sort of crafty
hobby before I had my kids, and I've picked that
back up again in the last few years. Um, I
also loved jigsaw puzzles. Both of those hobbies are really
(17:12):
beneficial for my mental health. Um, so I listen to
podcasts at the same time. I listen to your podcast.
S1 (17:19):
Only hours, right?
S3 (17:20):
Yes.
S1 (17:20):
Only yours.
S2 (17:21):
Thank you.
S1 (17:21):
Lisa. On repeat.
S3 (17:22):
But I might have a slight interest in crime podcasts. Mhm.
So I follow a lot of different sort of those
types of stories. Um, I love a good old saga. Um,
that I can tune into regular Episodes.
S2 (17:36):
You were also telling me before that you still do
some disability advocacy in different roles. Can you tell us
a little bit about that?
S3 (17:43):
Lisa, I think often it's the case that I have
this lived experience that I end up being asked often
to be involved in various things. So at the moment
I'm we do have a disability committee at my hospital
and I'm on that. Um, and then I'm also on
the Sepsis Reference Group, which is an East metro, um,
(18:04):
health department group. So in the years since I caught meningococcal,
which was obviously 25 years ago, there's been a lot
of work done around early recognition of sepsis, which is
essentially what I had, the septicaemia. It's an illness that
can be very hard to detect for medical professionals when
you first arrive at hospitals. And often people are sent
(18:25):
home thinking they've just got the flu. So there's been
a lot of work put into developing those clinical pathways.
And then my representation on that group is as a consumer.
So I've given them some feedback around how can we
make things better for the recovery process. And that's been
really gratifying to see how far we have come in
(18:45):
that time. And then the same in disability. When I
look back on some of the challenges I've had over
the years, just with a physical disability and how much
access has improved. So even when I'm not volunteering in
the sector and as you know, since I left people
with disabilities WA, I've had a good old break. I
do tend to get involved in something, end up doing
(19:08):
lots of work, get tired and then need a bit
of a rest, and then I'll get a bee in
my bonnet about something and I'll find myself back in there.
And I know with a lot of my contemporaries around
my age, or people who've been advocating for a long time,
we all seem to follow similar patterns of. And that's
the wonderful thing about volunteer work, is that you can
(19:29):
sort of pick and choose what you want to be
involved in, and come and go when you're ready, and
when you've got the capacity and the emotional energy, because
it can be emotionally demanding.
S2 (19:38):
Yes.
S3 (19:39):
Even when I'm not volunteering as such in the sector,
I'm still quietly advocating. For example, there are many playgrounds
and play centres and child related places that now have
disabled parking because when my kids were young and I'd
go somewhere, there would be nowhere for me to park
because it never occurred to them. People with disabilities might
(20:00):
have children, which thankfully has changed a lot.
S2 (20:04):
So you've come into the studio today and you have
your prosthetic legs, but sometimes you often have to use
a wheelchair. Is that right?
S3 (20:12):
Yes, I use my wheelchair every day, usually when I
get home, and then if I think I'm going to
walk a long distance, I'll take it outside the house.
S2 (20:20):
You've spoken in the past about how difficult it was
getting through the transition of having the illness of meningococcal,
but yet the transition of the disabling effects of having
a disability were even more empowering, impacting on you than
(20:40):
than the actual fact of becoming an amputee. Can you
speak a little bit about that?
S3 (20:45):
So I think once the crisis is over, of of
being unwell and you've recovered well, then you've got the
rest of your life to make the modifications required to
just be able to function. Um, so yes, the, the
world was, I think, like I said, it's come a
long way, but I think there were definitely many frustrations
and challenges over the years. Um, Aaron and I have
(21:07):
travelled a lot both before and after children. So we
do come face to face with situations where you have
to be quite creative, which is why I always think
people with disabilities make great employees because we actually have
really good problem solving skills.
S2 (21:24):
Yeah, that's. Yes indeed. What are some of the assumptions
do you think people have about someone who is a
double amputee or amputee of any type?
S3 (21:33):
I suppose I think personally, I don't find my life
too much of a struggle on a day to day
basis because we have worked to make our lives with
all the assistive technology and capability that is available to us.
We've tweaked our lives to an extent where it does work.
There are times when I get invited to something and
(21:54):
there are people try to second guess what I'm going
to need. But I found that that has also improved
over the years, that people leave it to me to
worry about how I'm going to get in or how
I'm going to get out. Obviously, I'm a hybrid so
I can get in and out of my wheelchair, which
makes life a lot easier. The biggest challenge is walking distance.
I'll often say to people, well, how far away is that?
(22:17):
And they'll be like, oh, just a couple of hundred meters. Um,
and I do not believe it when an able bodied
person says it's not very far.
S2 (22:25):
No.
S3 (22:26):
But then we have Google Maps, right?
S1 (22:28):
I don't.
S3 (22:28):
Believe so.
S1 (22:29):
Now my partner says it.
S2 (22:31):
Leisha. Just with that answer, it demonstrates the leadership I
was talking about before. But to someone who's going through
the experiences that you've faced or has never faced something
like that, is it a difficult. I've asked this with
other guests as well. Is it a difficult burden to
(22:52):
feel yourself, to be a bit of a role model
and say, well, I've just got on with it.
S3 (22:56):
I've definitely struggled with the word inspiration and with people
looking to me for inspiration. It just doesn't sit that
well for me. And while I appreciate that people can
look to my life and draw confidence from it, especially
if you're coming through an amputation or an illness and
(23:20):
coming out the other side, or just trying to live
life with a progressive condition like my husband with his Parkinson's.
It's more of a progressive, deteriorating condition, which in some
ways has been harder for me than than my condition,
which is stable because you're constantly changing and you're constantly
having to readjust. And that was quite a different kettle
(23:42):
of fish for me.
S2 (23:44):
Yeah.
S3 (23:44):
But I do struggle with the idea of inspiration. Well,
we call it inspo porn, don't we? Behind the scenes.
S2 (23:51):
Some people do.
S3 (23:52):
Yeah. Yes. Um, because I think inspiration comes from so
many different places and so many different things. Um, so
while it's great to appreciate somebody else's challenges and struggles
and also try to be as supportive and assistive in
that space, it's putting us up on a pedestal I
don't think helps us to, like, integrate into the community.
S2 (24:16):
Yeah. Now, we'll probably have to start winding up our
conversation soon, Lisa. But firstly, I'll ask you, is there
anything particular you'd like the public to know about meningococcal.
S3 (24:26):
So meningococcal is now largely preventable in the sense that
there are vaccinations. So three years after my illness, the
type C vaccine came out and everyone gets that now.
So that makes me a bit of a dinosaur. There
was then a vaccine for type B, which was the
trickiest one of them all because the type B bacteria
kept changing its outer shell when it wanted to, and
(24:49):
it made it hard for them to pin it down.
But there is now a vaccine for type B. Unfortunately,
you have to pay for that. So I've had both
my kids vaccinated when they were young. And then there's
the vaccine, which they call the travel vaccine, and they're
now giving that, I believe, to high school kids. So yeah,
I guess the important thing is to know that don't
(25:09):
assume that your kids are vaccinated for everything.
S1 (25:12):
Can I can I ask, how did you get meningococcal?
S3 (25:17):
So it just kind of lives in the back of
your throat. So I had all the risk factors. So
there's a bunch of risk factors as to why someone
might become unwell. I was working 60 hours a week, um,
in London, um, at a hospital, having a great old
time on the weekends or, you know, partying with all
the travel mates that I'd made. I was living in
a share flat. So, you know, overcrowded living conditions. Um,
(25:41):
smoking is one of them. I don't remember if I
was actually smoking, but I was certainly around at that time,
a lot of smokers. So there's a there's a list
of risk factors. Um, but I know now when I
see younger people, you know, really overdoing it. Um, as
my dad would say, burning the candle at both ends,
which I'm known to do, um, to just take it
(26:04):
easy and have some downtime. Um, and the other part
is that if you are unwell, let someone know. Because
I went to bed at 6 p.m. and it wasn't
until 8 a.m. the next morning that my partner, now
my husband, came home from work and found me and
called the ambulance. So I always made sure I kept
my kids with me when when they were sick, so
(26:26):
I could just keep an eye on them. Because when
you are starting to get unwell, you don't realise how
unwell you've actually become. You become quite delirious.
S2 (26:34):
Yeah. What would you say to someone that's just either
having to address amputation in some way?
S3 (26:42):
We have an amazing support network in Australia called limbs
for life and they have peer supporters. So one of
my roles when I was with the amputees in action
was we set up a peer support program, um, that's
now being run nationwide. Um, they've set up, you know,
their own limbs for life. So that's definitely a resource
(27:03):
because I found personally having other people in the same
situation that you can talk to is absolutely invaluable. Yes.
And I guess the other thing is with learning to
use prosthetics. So not everyone can have prosthetics. But if
you are given prosthetics and you're suitable. It's not a
miracle cure. It's actually hard work. You have to wear
(27:26):
them every day and just gradually build up. And don't
let them defeat you.
S2 (27:31):
So it's been a pleasure to speak with you this week. Um, Lisa,
and thanks again for coming into the studio and it's
been great to chat with you. Thanks for coming in.
S3 (27:39):
Thanks so much for having me, Simon.
S1 (27:46):
That concludes in Plain Sight for this week. Join us,
Abby Greene and Simon Chung at the same time next
week on Vision Australia Radio, VA radio digital and online
at VA Radio.com. You can also listen on demand by
searching for In Plain Sight wherever you get your podcasts,
or ask your smart device to play in Plain sight
(28:08):
by Vision Australia Radio. Thanks for listening.
Hi I'm Abby.
S2 (00:07):
I'm Simon, and welcome to. In Plain Sight, a program
where we highlight people who are making a positive impact
within their community and the disability sector.
S1 (00:16):
Shining a light on those who might otherwise be hidden
in plain sight.
S2 (00:21):
And we share these stories on a weekly basis with
you here on Vision Australia Radio. Hi, Abby.
S1 (00:27):
Hi, Simon. How are you?
S2 (00:28):
I'm very well, thank you. Looking forward to another week
ahead and had a good week so far. Now, Abby,
this week we will be talking to Lisa Burnett who
does a lot of voluntary work, and I met her
whilst she was doing some voluntary work for people with
disabilities in Western Australia. And I'm wondering, Abby, have you
ever done any voluntary work?
S1 (00:49):
Yes, I have uh, when I was in high school,
I volunteered for Vinnies, otherwise known as Saint Vincent de Paul,
which was a club that we, in the most basic sense,
raise money for the homeless. I even did the change
Turns out in the city many years ago now, and
we organized at school a winter sleep out which was
(01:09):
supposed to mimic. Yeah, it was supposed to mimic what
it was like as best you could. Anyway, being homeless
out in the city and Perth. And so people would
donate money and we would have speakers come and speak
to the students and you would have to sleep in
sleeping bags. So we did get some comforts, but there
was no mattresses and it was still pretty cold.
S2 (01:28):
To remind people out there that we here at Vision
Australia Radio are all volunteers, and we provide this service
at Vision Australia Radio because we enjoy doing it and
we think it's a valuable service and we like to
contribute to society by helping out. Now, both Abby and
I have different reasons why we have chosen to be
(01:49):
volunteers within this particular role. And for myself, I have
always wanted to be a radio presenter and I initially
wanted to be a fancy music DJ. But here I
am talking to people because I love talking to people
and I like meeting people. But I've done lots of
volunteer work over the years, which has been a controversial
(02:10):
thing in the disability sector, because sometimes people in the
disability world get overused as volunteers instead of being taken
up for paid positions. But our society here in Australia
probably couldn't exist in a successful way that it does
without volunteers, because there are people volunteering every kind of
(02:31):
role you can ever imagine.
S1 (02:32):
Yeah. In 2020, it was estimated that over 5 million
people were volunteering through a group or organisation, and I
can only guess that that number is about the same now,
if not has increased.
S2 (02:46):
The reason we're talking about this is because there's so
many people like our guests that we'll speak to later on, Lisa,
who do such valuable work in the community. Where would
we be without volunteers? And I'd like to thank Vision
Australia Radio for the opportunity for giving me this chance
to be a volunteer on their radio station. So, Abby,
(03:08):
what skills or knowledge do you think you learnt from
that volunteering experience that you had?
S1 (03:14):
I think a big part of it was community. I
really enjoyed it. I did it with my best friends.
S2 (03:19):
But what I would like to say about volunteer work too,
there's a whole bunch of reasons why we do it,
and one of the reasons is, is to gain valuable
skills very beneficial for us personally, and that can help
lead us into paid work in some areas as well.
S1 (03:35):
Yeah, you learn. You learn a lot. Like even me
being volunteering with Vision Australia for maybe six months I
think now and I've learnt a lot. You know, I'm
learning how to schedule management, even, um, interviewing with guests. Um,
I've learned how to use the podcasting studio and the
sound board, and you just interconnect and meet so many
(03:58):
different people in the community. And yeah, it's really beneficial
I think.
S2 (04:02):
And you mentioned the word community there. And that's a
really important aspect of what we're doing here. And it's
a big thing that I like to harp about is community.
When we do volunteer work, we become part of a
community and we have a sense of belonging. So helping
out as a volunteer can help you find that sense
(04:22):
of belonging and give you a sense of purpose and direction.
S1 (04:27):
100%. And the woman that we're speaking to today, she
she is amazing. She volunteers across so many different areas
while also having a family and working full time.
S2 (04:39):
It's one of those things where sometimes the busiest people
find the ways of doing more and more stuff, and
I find that really fabulous.
S1 (04:47):
Yeah, exactly. And today we'll be speaking to Lisa Burnett,
a clinical information nurse and volunteer disability advocate, and we'll
hear from Lisa now. Up.
S2 (04:58):
Hi, Lisa. How are you going?
S3 (04:59):
Hi, Simon. I'm great. Thanks for having me.
S2 (05:02):
It's good to see you today. It's great that you
could join us here in the studio at Vision Australia Radio. Now,
tell us, what is your job title that you are
currently doing at that hospital?
S3 (05:11):
My role is called Clinical Information Support Nurse, which nobody
really understands what I exactly do, but I advocate and
support our clinicians across the hospital when they're using our
IT systems that require them to use them for clinical data.
So it's a combination of helping with problem solving and
(05:33):
troubleshooting and rolling out new systems and supporting the systems.
S4 (05:36):
How did you.
S2 (05:37):
Transition from being a regular nurse? If I could use
that terminology to doing the kind of role that you're
doing now.
S3 (05:44):
So when I was 24, I was doing my big
overseas experience in the UK. I was working at a
hospital in London in a dialysis unit, and I caught
meningococcal disease. Yeah, so I was a baby nurse at
that stage. Um, in the sense that I'd sort of
been nursing for 5 or 6 years, but I had
(06:04):
to take a complete career change. Um, because I lost
my legs as a result of the meningococcal disease and
spent about 18 months off work. So that was when
my volunteer career started, in fact, because I didn't want
to take on any commitments around paid work. But I
also had to reconsider my career. Um, so for about
(06:27):
ten years, I had the opportunity to go back to
my old hospital, um, at Royal Perth, and do research
in the department that I'd been in. And from that
I kind of morphed into it, and I haven't left,
which happens a lot in it.
S2 (06:41):
Now, initially you said you had 18 months off work,
which to me sounds like a very short time. And
I find all that, um, fascinating and quite amazing. Can
you firstly tell us about meningococcal and how, um, what
it is? Because a lot of us won't know what
(07:01):
that means and how that looked for you at that time.
And when was that? When you were diagnosed with that?
S3 (07:08):
So that was back in 2000. Meningococcal is a bacteria
that lives in the back of the throat of about 10%
of the population, and it moves around. So like all bacteria,
most people they think are probably already immune to becoming
ill with the disease in the sense that your immune
system would fight it off. In some cases, the bacteria
(07:29):
can get across what they call the blood brain barrier
and get into the meninges and cause meningitis, and then
it can also cause septicaemia. So I had the septicaemia,
which is sort of the worst case scenario. Your life
expectancy or prognosis is quite low because of how quickly
(07:50):
the disease moves. So if you get caught early, then
you come out with relatively few side effects. I was
taken to hospital because my partner found me semi-conscious after
a night and he called the ambulance. So I then
spent about two weeks in ICU, but by then the
blood leaking into the tissues that occurs from the bacteria
(08:14):
meningococcal it attacks all the blood vessels had done so
much damage that I ended up losing both my legs
below the knee, and I've had quite a lot of
split skin grafts on my arms.
S2 (08:24):
Wow.
S3 (08:25):
So it was quite a long recovery. I spent four
months in hospital in London, and then I was ready
for thinking about prosthetic legs, at which time they shipped
me off back to Australia to start my really what
they call rehabilitation.
S2 (08:38):
Gosh, that's a very traumatic end to your big adventure
in London there.
S3 (08:43):
And it totally changed what I thought I was going
to do with my life, because I had big plans
for more travelling to work up north in Aboriginal communities
and do more of that type of nursing, but instead
ended up much more metropolitan based. While I managed all
the challenges, as you know, associated with having a disability
and recovering.
S2 (09:03):
Just to backtrack a little bit, how did you become
interested in being a nurse and having that community spirit?
S3 (09:09):
I think when I was about five and they said,
what do you want to be when you grow up?
I always said, a nurse. I feel like my parents
kind of latched on to that because nobody in my
family had a degree, a university degree. So it became
a bit of a expectation that I would go to
uni and study. And so I guess also around the
(09:30):
time that I was growing up, the careers available to
girls back then, I mean, weren't as diverse as they
are now. It was sort of nursing teaching. You were
sort of encouraged to go in a certain direction. I
was encouraged to do nursing because I'd always have a job,
which has been absolutely true. But I've always had a
very strong interest in healthcare and the human body. And then,
(09:50):
of course, the reward that comes from helping other people.
S2 (09:54):
And what? Why? I got you into the studio to
talk with you today, Lisa, is because from the moment
I met you a few years ago now, is that
you also have a very strong and obvious passion and
desire to be an active member of the community and
in this case, an active member of the disability community.
We met while we were both working as volunteers for
(10:16):
PWD people with disabilities, Western Australia, while we were on
the Committee of Management at PWD. You were the chairperson
of that, um, board, and you were such a great
leader in that, in that role, because you were a
strong leader and you led with example, but you also
(10:39):
led with compassion. And I really appreciated that as that
I was working alongside you and in some cases, working
underneath your leadership skills. And I wanted to publicly thank
you for demonstrating great leadership there. Lisa.
S3 (10:54):
Well, thank you, Simon. I also appreciated all the support
that you gave me in the time on that committee
because I stepped into the chair role. Um, our chairperson
that I that was there when I joined only a
year before, um, stepped down and I sort of was
encouraged into the chairperson position and had to grow with
the role. So Simon was there for all of that,
(11:16):
I believe.
S2 (11:17):
Yes. Now, I find it really interesting that you went
through this quite dramatic and traumatic experience, uh, in the
year 2000 and we're in year 2025 now. And to me,
that doesn't seem that long a time. And looking at
some of the notes that you shared with me, you've
(11:39):
always been actively involved in trying to inform the public about, um,
Meningococcal disability. What it's like to be an amputee and
all these different areas of of your life. Tell us
about how that got started and why you're so keen
on doing that.
S3 (11:58):
My life in volunteering started when I was sitting around
at home doing nothing, because I was recovering and going
to the gym every day and rehabilitating. And I reached
out to a group called Amputees in Action, which was
auspiced by Megan Shand, who we all know. She, uh,
invited me onto the committee, and then I just became
(12:19):
quite involved. I think where I can see a gap,
I will fill it. And I suspect that's how I've
ended up doing so many weird and wonderful things. If
there's a gap and I. I think that I can contribute,
then I somehow end up helping out.
S2 (12:34):
And you also wrote a book. And what year was that? 2008.
Was it?
S3 (12:38):
Yeah, I published my book in 2008, but I actually
started writing it ten years before. For. I was really
glad that I waited so long to publish it. The
first sort of versions were probably more angry and frustrated,
but then over time, you know, it became a much
more full version. And I guess the reason I started
writing it was because so many people said to me,
(13:01):
you should write a book about your recovery. And in
the end I thought, well, it is quite therapeutic to
write it all down, and now there's something out in
the world that other people who are experiencing meningococcal disease
can go to. I know when I was in hospital,
it was so valuable to have other people's stories, to
sort of follow their, their, their progress and their journeys.
S2 (13:23):
What's the book called? Lisa.
S3 (13:24):
It's called Learning to Walk.
S2 (13:26):
And where can we find that book?
S3 (13:28):
Um, it's still available on Lulu.com, and they've converted it
to an ebook as well. Now.
S1 (13:34):
This week we are speaking to Lisa Burnett, Clinical Information
nurse volunteer disability advocate.
S2 (13:41):
You volunteer in a whole range of different areas because
you are an amputee, but you also volunteer within your
own community where you live. You've told me that you
volunteer as a scout for the Scouts, is that right?
S3 (13:54):
Yes. I've been chair of the Scouts committee for about
seven years now. Again, a situation where I was tapped
on the shoulder and just never really left. I keep
telling them that I really should because my kids are
almost out of scouts now, but they seem to be
quite happy with the minimal amount that I'm contributing currently.
I did do a lot of work in the first
(14:16):
sort of five years, but then of course, you do
reach a point in some of these roles where you
get to sit back and enjoy the benefits of what
you'd previously put in.
S2 (14:24):
Because I want to focus on volunteering and that whole
sense of giving back to the community and the different
communities that we belong. And you work at a hospital,
which is a busy, stressful job. You're a wife and
a mum. You have two kids? Well, all those roles
can be a very time consuming, um, pursuit, to use
(14:48):
that term. Now, I don't know how much you want
to divulge about your family situation, but I believe that
your your husband also has a disability or illness as well.
Is that right?
S3 (14:58):
Yes. So I guess I'm fortunate in a way that
my husband doesn't work. He has Parkinson's disease, so he
retired medically. About must be almost two years ago. That
does give me a little bit of extra time in
a sense, because when there are incidents, as there are
with kids, where they need to be picked up during
(15:18):
the day, or they need to be taken to activities
or pick up from school. My husband's also available to
do those things. He still drives.
S2 (15:26):
Tell us what it's like having a partner with Parkinson's disease.
S3 (15:30):
Parkinson's isn't the sort of death sentence, I guess that
it used to be, in the sense that there's a
lot of treatment available. He is about to have some
surgery which will, um, hopefully improve his symptoms. I think
the hardest thing is that the cognitive workload around managing
(15:52):
schedules and appointments and all the paperwork, which seems to
be ever increasing in modern life, does fall to me
in some ways. I don't mind doing it because I
quite enjoy all of that type of work. The more
mental load type stuff. I'm not a physical kind of person,
you know. I'm not out playing sport. Yeah.
S2 (16:13):
I did notice that I was looking up different things
on the internet the other day that on April 11th
it will be World Parkinson's Day, and Parkinson was named
after the person who found the cause of that particular
tremor disease and James Parkinson. So by the time this podcast,
(16:34):
this radio program goes out to air, it will be
nearly April 11th and it will be nearly World Parkinson's Day.
So another day of acknowledgement. And it's good to acknowledge
these things, to bring awareness. You just mentioned that you're
not a sporty person. What what do you do if
you have do you have any other spare time in
your busy life? Lisa.
S3 (16:51):
Well, my kids are getting older now, so I have
had to find hobbies again. Um, I did a lot
of cross stitch, which is a stitching sort of crafty
hobby before I had my kids, and I've picked that
back up again in the last few years. Um, I
also loved jigsaw puzzles. Both of those hobbies are really
(17:12):
beneficial for my mental health. Um, so I listen to
podcasts at the same time. I listen to your podcast.
S1 (17:19):
Only hours, right?
S3 (17:20):
Yes.
S1 (17:20):
Only yours.
S2 (17:21):
Thank you.
S1 (17:21):
Lisa. On repeat.
S3 (17:22):
But I might have a slight interest in crime podcasts. Mhm.
So I follow a lot of different sort of those
types of stories. Um, I love a good old saga. Um,
that I can tune into regular Episodes.
S2 (17:36):
You were also telling me before that you still do
some disability advocacy in different roles. Can you tell us
a little bit about that?
S3 (17:43):
Lisa, I think often it's the case that I have
this lived experience that I end up being asked often
to be involved in various things. So at the moment
I'm we do have a disability committee at my hospital
and I'm on that. Um, and then I'm also on
the Sepsis Reference Group, which is an East metro, um,
(18:04):
health department group. So in the years since I caught meningococcal,
which was obviously 25 years ago, there's been a lot
of work done around early recognition of sepsis, which is
essentially what I had, the septicaemia. It's an illness that
can be very hard to detect for medical professionals when
you first arrive at hospitals. And often people are sent
(18:25):
home thinking they've just got the flu. So there's been
a lot of work put into developing those clinical pathways.
And then my representation on that group is as a consumer.
So I've given them some feedback around how can we
make things better for the recovery process. And that's been
really gratifying to see how far we have come in
(18:45):
that time. And then the same in disability. When I
look back on some of the challenges I've had over
the years, just with a physical disability and how much
access has improved. So even when I'm not volunteering in
the sector and as you know, since I left people
with disabilities WA, I've had a good old break. I
do tend to get involved in something, end up doing
(19:08):
lots of work, get tired and then need a bit
of a rest, and then I'll get a bee in
my bonnet about something and I'll find myself back in there.
And I know with a lot of my contemporaries around
my age, or people who've been advocating for a long time,
we all seem to follow similar patterns of. And that's
the wonderful thing about volunteer work, is that you can
(19:29):
sort of pick and choose what you want to be
involved in, and come and go when you're ready, and
when you've got the capacity and the emotional energy, because
it can be emotionally demanding.
S2 (19:38):
Yes.
S3 (19:39):
Even when I'm not volunteering as such in the sector,
I'm still quietly advocating. For example, there are many playgrounds
and play centres and child related places that now have
disabled parking because when my kids were young and I'd
go somewhere, there would be nowhere for me to park
because it never occurred to them. People with disabilities might
(20:00):
have children, which thankfully has changed a lot.
S2 (20:04):
So you've come into the studio today and you have
your prosthetic legs, but sometimes you often have to use
a wheelchair. Is that right?
S3 (20:12):
Yes, I use my wheelchair every day, usually when I
get home, and then if I think I'm going to
walk a long distance, I'll take it outside the house.
S2 (20:20):
You've spoken in the past about how difficult it was
getting through the transition of having the illness of meningococcal,
but yet the transition of the disabling effects of having
a disability were even more empowering, impacting on you than
(20:40):
than the actual fact of becoming an amputee. Can you
speak a little bit about that?
S3 (20:45):
So I think once the crisis is over, of of
being unwell and you've recovered well, then you've got the
rest of your life to make the modifications required to
just be able to function. Um, so yes, the, the
world was, I think, like I said, it's come a
long way, but I think there were definitely many frustrations
and challenges over the years. Um, Aaron and I have
(21:07):
travelled a lot both before and after children. So we
do come face to face with situations where you have
to be quite creative, which is why I always think
people with disabilities make great employees because we actually have
really good problem solving skills.
S2 (21:24):
Yeah, that's. Yes indeed. What are some of the assumptions
do you think people have about someone who is a
double amputee or amputee of any type?
S3 (21:33):
I suppose I think personally, I don't find my life
too much of a struggle on a day to day
basis because we have worked to make our lives with
all the assistive technology and capability that is available to us.
We've tweaked our lives to an extent where it does work.
There are times when I get invited to something and
(21:54):
there are people try to second guess what I'm going
to need. But I found that that has also improved
over the years, that people leave it to me to
worry about how I'm going to get in or how
I'm going to get out. Obviously, I'm a hybrid so
I can get in and out of my wheelchair, which
makes life a lot easier. The biggest challenge is walking distance.
I'll often say to people, well, how far away is that?
(22:17):
And they'll be like, oh, just a couple of hundred meters. Um,
and I do not believe it when an able bodied
person says it's not very far.
S2 (22:25):
No.
S3 (22:26):
But then we have Google Maps, right?
S1 (22:28):
I don't.
S3 (22:28):
Believe so.
S1 (22:29):
Now my partner says it.
S2 (22:31):
Leisha. Just with that answer, it demonstrates the leadership I
was talking about before. But to someone who's going through
the experiences that you've faced or has never faced something
like that, is it a difficult. I've asked this with
other guests as well. Is it a difficult burden to
(22:52):
feel yourself, to be a bit of a role model
and say, well, I've just got on with it.
S3 (22:56):
I've definitely struggled with the word inspiration and with people
looking to me for inspiration. It just doesn't sit that
well for me. And while I appreciate that people can
look to my life and draw confidence from it, especially
if you're coming through an amputation or an illness and
(23:20):
coming out the other side, or just trying to live
life with a progressive condition like my husband with his Parkinson's.
It's more of a progressive, deteriorating condition, which in some
ways has been harder for me than than my condition,
which is stable because you're constantly changing and you're constantly
having to readjust. And that was quite a different kettle
(23:42):
of fish for me.
S2 (23:44):
Yeah.
S3 (23:44):
But I do struggle with the idea of inspiration. Well,
we call it inspo porn, don't we? Behind the scenes.
S2 (23:51):
Some people do.
S3 (23:52):
Yeah. Yes. Um, because I think inspiration comes from so
many different places and so many different things. Um, so
while it's great to appreciate somebody else's challenges and struggles
and also try to be as supportive and assistive in
that space, it's putting us up on a pedestal I
don't think helps us to, like, integrate into the community.
S2 (24:16):
Yeah. Now, we'll probably have to start winding up our
conversation soon, Lisa. But firstly, I'll ask you, is there
anything particular you'd like the public to know about meningococcal.
S3 (24:26):
So meningococcal is now largely preventable in the sense that
there are vaccinations. So three years after my illness, the
type C vaccine came out and everyone gets that now.
So that makes me a bit of a dinosaur. There
was then a vaccine for type B, which was the
trickiest one of them all because the type B bacteria
kept changing its outer shell when it wanted to, and
(24:49):
it made it hard for them to pin it down.
But there is now a vaccine for type B. Unfortunately,
you have to pay for that. So I've had both
my kids vaccinated when they were young. And then there's
the vaccine, which they call the travel vaccine, and they're
now giving that, I believe, to high school kids. So yeah,
I guess the important thing is to know that don't
(25:09):
assume that your kids are vaccinated for everything.
S1 (25:12):
Can I can I ask, how did you get meningococcal?
S3 (25:17):
So it just kind of lives in the back of
your throat. So I had all the risk factors. So
there's a bunch of risk factors as to why someone
might become unwell. I was working 60 hours a week, um,
in London, um, at a hospital, having a great old
time on the weekends or, you know, partying with all
the travel mates that I'd made. I was living in
a share flat. So, you know, overcrowded living conditions. Um,
(25:41):
smoking is one of them. I don't remember if I
was actually smoking, but I was certainly around at that time,
a lot of smokers. So there's a there's a list
of risk factors. Um, but I know now when I
see younger people, you know, really overdoing it. Um, as
my dad would say, burning the candle at both ends,
which I'm known to do, um, to just take it
(26:04):
easy and have some downtime. Um, and the other part
is that if you are unwell, let someone know. Because
I went to bed at 6 p.m. and it wasn't
until 8 a.m. the next morning that my partner, now
my husband, came home from work and found me and
called the ambulance. So I always made sure I kept
my kids with me when when they were sick, so
(26:26):
I could just keep an eye on them. Because when
you are starting to get unwell, you don't realise how
unwell you've actually become. You become quite delirious.
S2 (26:34):
Yeah. What would you say to someone that's just either
having to address amputation in some way?
S3 (26:42):
We have an amazing support network in Australia called limbs
for life and they have peer supporters. So one of
my roles when I was with the amputees in action
was we set up a peer support program, um, that's
now being run nationwide. Um, they've set up, you know,
their own limbs for life. So that's definitely a resource
(27:03):
because I found personally having other people in the same
situation that you can talk to is absolutely invaluable. Yes.
And I guess the other thing is with learning to
use prosthetics. So not everyone can have prosthetics. But if
you are given prosthetics and you're suitable. It's not a
miracle cure. It's actually hard work. You have to wear
(27:26):
them every day and just gradually build up. And don't
let them defeat you.
S2 (27:31):
So it's been a pleasure to speak with you this week. Um, Lisa,
and thanks again for coming into the studio and it's
been great to chat with you. Thanks for coming in.
S3 (27:39):
Thanks so much for having me, Simon.
S1 (27:46):
That concludes in Plain Sight for this week. Join us,
Abby Greene and Simon Chung at the same time next
week on Vision Australia Radio, VA radio digital and online
at VA Radio.com. You can also listen on demand by
searching for In Plain Sight wherever you get your podcasts,
or ask your smart device to play in Plain sight
(28:08):
by Vision Australia Radio. Thanks for listening.
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