August 19, 2025 • 28 mins
Join us as we explore the world of Deafblindness. Our guest this week, Hannah McPierzie, is the Chairperson of Deafblind West Australians (DBWA). She gives us an insight into the great work DBWA is doing and how they support their community. Hannah also shares a little of her own personal story, which led her to be in a leadership role with this organisation.
DBWA has developed a new leadership program for people aged 18-35, and we learn all about this fantastic initiative.
DBWA provides support for West Australians who are Deafblind. Find out more on their website.
Find out more about DBWA's Young Leaders program here on their website. This program was developed for anyone living with sensory loss, who is Deafblind, Deaf, Hard of Hearing, blind or has low vision, and who has initiative and drive.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:14):
Hello, I'm Simon Chong and welcome to In Plain Sight,
a program where we highlight people who are making a
difference and impact within the disability sector and their community.
We shine a light on those who otherwise would be
hidden in plain sight. And it's a pleasure to bring
you these programmes on a weekly basis here on Vision
Australia Radio.
S2 (00:35):
Welcome to the program. This week I'm Andrew Williams and
of course with me in the studio as every week
is Simon Chong. How are you this week, Simon?
S1 (00:43):
Hi, Andrew. I'm great. Good to see you this week
as always. Had a really busy and interesting week. I
want to start this conversation firstly with a bit of
a whinge. Sorry about that folks. It's sort of a
follow on from a conversation I was having with one
of our guests a few weeks ago, talking about how
to make things fully accessible and fully inclusive. We did
(01:07):
also mention this with our guest, Scott Holley, about how
to make the online world. The world of digital content
more accessible. And I had a frustrating experience recently when
I went on to look at a magazine that was
not accessible online. My computer did not recognize what was
(01:29):
on the screen as text. It didn't see it as words.
It saw it as images. So the fancy technology that
I use to get the computer to read out the
printed word to me so that I can access it
in an easy fashion, was not available from this website.
And I find that really frustrating. And I just want
(01:52):
to remind people, if you have anything to do with
creating content online, if you are putting on an event,
if you are trying to hold something for people with
disabilities to attend or to join in on, make sure
every aspect of that is inclusive. As was talking with
my guest a few weeks ago. Melanie, about ticketing, for instance,
(02:16):
make sure the ticketing on the website is accessible. Make
sure any content that someone needs to read is accessible,
and make sure that when you are holding an event,
the physical space is accessible. Now, if you don't know
what this means, especially on the online area, look it up.
Find out how to make your website your content available
(02:41):
for everybody and anybody with no matter what their ability
is or their disability is. And that is what we
are trying to get across to people here on this program.
In plain sight on Vision Australia Radio. On a brighter note, Andrew,
I also want to make mention of one of my
favorite guests, Eliza Hull, which I interviewed Eliza nearly 12
(03:06):
months ago at the beginning of this program. And the
reason I'm mentioning Eliza right now is that she has
just released a new single, which is her interpretation of
the Silverchair song called tomorrow. She's doing this as part
of a television program. She was asked to create a
(03:30):
this song for this particular television program, and I listened
to this song in total. I was a fan of
the song Tomorrow by Silverchair when it first came out
in the early 1990s. It's an awesome song. And of course,
Silverchair were quite the grungy, blokey, hard rock act of
(03:51):
the early 90s and fitted into that whole grunge scene.
And Eliza is the total opposite. Eliza is a beautiful, well,
expressive woman, a powerful woman in her own right, and
she gives this really hauntingly beautiful rendition of this fabulous
song tomorrow, which I highly recommend checking out on any
(04:15):
of the areas where you find your music. And Andrew,
I believe Eliza has also got some appearances live appearances
coming up in Victoria and Queensland.
S2 (04:24):
That's right. Yes. On the 23rd of August, she's appearing
at the words in Winter Festival Gala. And that's, uh,
the words in Winter Festival takes place in Hepburn Springs
in Victoria. And then on the 7th of September, there's
an appearance at the Big Love Festival in Queensland. So
there are a couple of couple of dates to look
(04:46):
out for. Sounds very exciting with this new new version
of the song. Can't wait to hear it!
S1 (04:51):
It is fabulous. And don't forget, Eliza Hull is not
only a fabulous singer, she's an author and a very
strong and proud disability advocate. Well worth checking out, as
is our guest for today, Hannah Makepeace, who is a
deaf blind advocate and one of the things she talked
(05:12):
about within the interview was a performance that happened a
few years ago at the Perth festival. Andrew, you got
the details of that performance in front of you there,
haven't you?
S2 (05:21):
Yes, it's it's called the lifetime of deaf and deaf Blind.
And it was on Perth Fringe last year in February.
And it's it sounds absolutely fascinating. And in the interview
Hannah talks about hopefully a remounting that production. So with
a bit of luck all the funding will come through
for that. So I'd really look forward to to seeing that.
(05:43):
It was a terrific performance with Eddie Stepanek. And he's
also the the deputy chair of DBS. And the creator
of the show is Peter Blockey. So that'll be an
interesting one to see if it if it gets up
again really deserves to to be getting another outing.
S1 (06:04):
I had a really fabulous conversation with Hannah, which I
really enjoyed. And one of the things we are focusing
on within that conversation is the DB youth project, which
we'll find out all about, and I hope you enjoy
listening to that coming up.
S2 (06:21):
We have a great range of guests on the program,
and so if you have any ideas or suggestions of
guests or story ideas for future programs, we'd love to
hear from you. You can get in touch with us
here at the program at In Plain Sight at Vision Australia.
And now he's the interview with Hannah.
S1 (06:42):
And this week's guest is Hannah Makepeace. And she is
the chairperson for Deafblind Western Australia. I'd like to welcome
Hannah to the studio now. Hello, Hannah.
S3 (06:51):
Thanks, Simon. Thank you for having me here. I'm really excited.
S1 (06:53):
Yeah. Can you firstly tell us a little brief summary
of what deafblind Western Australia is and what it's all about?
S3 (06:59):
Yeah. So deafblind West Australians DB um, we're the only
peer support group for people living with deaf blindness or
dual sensory loss in Western Australia. um where a PR
run um group. So everyone on um, on the organising
committee is related to Deafblindness in some way, whether that's
(07:20):
a person living with Deafblindness or, or a family of um,
and it really it provides connection and community to a
very vulnerable, um, demographic.
S1 (07:31):
Are there branches affiliations in other states?
S3 (07:35):
Yeah, we do, um, loosely, uh, not in any official capacity,
but we do have, um, a strong connection with deafblind Victoria. Um, also, um,
there's the deafblind group in Hunter Valley and then more broadly,
Deafblind Australia, who are very much involved.
S1 (07:52):
And Hannah, how long have you been involved with DBS?
S3 (07:57):
Uh, so I came into DBS as, um, in an
official capacity in 2023. Um, it was leading in from
myself becoming deafblind, um, two years previous to that. So
because I have a condition called neurofibromatosis type two NF2
(08:18):
to be easier, um, I have, um, lost my hearing. Um,
so I'm profoundly deaf, and I have, um, vision loss. So, um,
I was looking for a space that supported my needs.
And through that, I came across DBS and, um, saw
that I'd be able to help them and got involved.
S1 (08:41):
So tell us briefly what the name of that condition
once again, and how it how it came upon you
and how it affects you.
S3 (08:47):
Yeah. So, um, neurofibromatosis type two, NF2 um, it's a
rare genetic condition that, um, I got diagnosed with when
I was 29. Um, I hadn't heard of it before, but, um,
it's doesn't run in my family, so it's just me.
And what it means is, um, I produce too much
(09:09):
myelin Milan on my nerves. So I have benign tumors
along my nervous system. But the ones that are really, um, important,
I guess, are the ones on my auditory nerve. Um,
so they get to a certain size, and, um, they
have to sever the nerve to get out the tumors,
and then that leaves you profoundly deaf.
S1 (09:30):
So in a really naive summary of that is that
you have this condition that affects your nerves, which creates tumors,
and the tumors then affected your hearing and your vision.
S3 (09:42):
Yes. And, um, it also, um, when, when they sever
the nerve, um, it severs your vestibular system too. So
it affects balance, vision and hearing.
S1 (09:53):
Gosh. And you said you were diagnosed at. At age what?
S3 (09:56):
29.
S1 (09:57):
And how old are you now?
S3 (09:59):
I'm now 39.
S1 (10:00):
Okay. Ten years?
S3 (10:01):
Yep. Yeah. So five years after diagnosis. I had the
first surgery, and then one year later, I had the second.
So it was a big change.
S1 (10:10):
It would be now. I say this to a lot
of guests, and I try not to be patronizing when
I say this, but to me, ten years doesn't sound
very long. So my hat goes off to you for
getting to where you are and then putting yourself now
into a leadership role for this organization.
S3 (10:29):
Thanks for that, Simon. Yeah. It's not it's not very
long to get your head around it. I think the
thing that really helped was, um, I was a teacher
of students with disabilities, so I'd already been in that
space for quite some time when I was diagnosed. It's
a very different thing to to become, um, on a,
you know, to become disabled in a way. Um, but
(10:50):
it wasn't as, um, scary, I guess, in a way.
S1 (10:54):
So what is your line of work nowadays, Hannah?
S3 (10:58):
Uh, nowadays I do part time work at census, um,
as a deafblind educator. So, um, census, we are a
disability service provider, but they are the only provider in
our state that, um, that has deafblind services. So I
work part time there, um, supporting other people and supporting schools. Um,
(11:23):
and then the rest of the time I have my
own disability consulting business. It's just me and I, um,
sort of go out and, um, talk to organizations, hospitals,
universities on how to make communication accessible.
S1 (11:37):
We'll have to get you in again sometime just to
talk about that role in itself, because I find that
is a really important role. And there are a lot
of people that put themselves in that role with no
real experience in anything apart from that. They have a
disability and they think they can advise other people with
disabilities how to do stuff. Now, just touching on census
(11:59):
there for a minute, because I find that fascinating, because
I know a little bit about their background, because they
did start initially as a service for the deaf blind
many years ago. Is that correct?
S3 (12:12):
Yes.
S1 (12:13):
And I think it's fabulous because when I went to
a function that deaf blind Western Australia put on some
time ago for the acknowledgement of Deaf Blind Week, which
revolved around Helen Keller's birthday, I found it a really
moving and impacting event because as a lot of people
(12:34):
would imagine, having that dual sensory loss must be a
very isolating thing for many people.
S3 (12:41):
Yes. We're really fortunate at that event to have the
Minister for disability, Hannah Beazley, there. Um, and sensors and
Diwa ran that together. Um, and it really does help
having sensors on board. We have a very close alliance there,
and they support us in a lot of these events. Um,
(13:04):
because we just wouldn't have the sort of support to
do that on our own. And like you say, Simon,
it's such a it can be such an isolating disability, um,
really falling between the cracks of blindness or deafness when
you don't have the other sense to compensate. Um, it
can be, um, really, really cut off from many services.
S1 (13:27):
Indeed. And I think it's fabulous to support organisations like DBS.
Like you say, it's peer led. So what that means
to people is that they understand that terminology. It means
that everyone involved is either living with deaf blindness or,
and a supporter of, or an ally of, or a
family member of, and they're there to support one another
(13:51):
and I'm there to support them. And so just quickly,
can you tell us a couple of things that DBS
do for their clientele?
S3 (14:00):
Yeah. So DB um, we have I guess the biggest
thing is that we have the hub, which is um,
every fortnight at the rise in Maylands. Um, on a
Wednesday we have a drop in centre, um, which goes
from 1230 to 330. And during that we do basic
Auslan class social haptics. And then we will almost always
(14:23):
have a guest speaker coming out to speak to the
community about, um, different, different areas. So we've got people
come and speak to us when we've got our elections
coming up. We have the Electoral Commission come in, we
have palliative care. WA come in to speak about, you know,
how to do, um, power of guardianship or um, advanced
(14:45):
care planning. We have fun things, craft. We have lots
and lots and lots of, um, disability service providers come
out and share their services with us. So it's a
really important part. And that's probably the integral, um, meeting
point of dvwa.
S1 (15:03):
We have had guests in before that have represented deaf,
blind Western Australia. That was Deb and Lenny and Lenny
explained quite briefly, and I'd like you to explain it
again what haptics are.
S3 (15:16):
Haptics. So social haptics, um, it's a way of communicating, um,
to someone who has a dual sensory loss. Um, it
could be as simple as, um, it's so, so it's
through touch because it's tactile, but it could be as
simple as rubbing the person's arm to let them know that, um,
people are enjoying the activity they're doing. So I have people, um,
(15:41):
help me when I'm presenting because I can't I don't
get that feedback from the audience. I can't hear if
they're laughing or if they're nodding or, um, if they're clapping.
So I'll have someone. Often it is Lenny who stands
and rubs my back in certain different ways, or taps
to let me know that what I'm saying is resonating.
(16:01):
Or if people are laughing and she'll hold my, um,
arm to let me know not to talk over someone
who's asking a question, because I don't have that cue.
So social haptics are a fantastic way of connecting, um, and, uh,
making sure that the, the person who is deafblind knows
that you're there.
S1 (16:21):
How do people get in touch with DBS if they
have someone in their life or they're somehow connected with
deaf blindness, how would someone get involved?
S3 (16:30):
Um. Fantastic. So we we do have a Facebook page,
but mainly so deaf blind West Australian Facebook page. But, um,
I guess the main form is through our website which
is just DBS. And we've got lots of contact details
on there. I would also recommend, um, checking out coming
(16:51):
down to the hub on a Wednesday if you're able,
but definitely the the website or the Facebook page of
where we get most traction.
S1 (16:58):
I have been to the hub a couple of times,
and I found it not only fascinating and really interesting,
but I was really warmed by the great welcoming community
spirit that was on show there and how personable and
welcoming everybody was. It was a really nice thing. Just
(17:20):
before I go on to the next bit, I also
wanted to say for those listening to the podcast, we
will have the information about DB in the podcast description.
Should just look in there or get in contact with
us at In Plain Sight at Vision Australia. That's our
email address in plain sight at Vision Australia.
S2 (17:42):
You're listening to In Plain Sight on Vision Australia Radio
with Simon Chong and me. Andrew Williams. Our guest on
the program this week is Hannah MC Percy, who is
chairperson of deafblind. And now it's back to Simon and Hannah.
S1 (17:57):
What I wanted to talk to you about today is
the youth project that DBS have launched, and can you
tell us about that project and what it's all about, please?
S3 (18:08):
Yeah, absolutely. We're really excited about this. So, um, DB,
we're really fortunate that we were successful in, um, getting
the peer support and self-advocacy grant last year. That's really been, um,
a huge boost to not just our bank account, but
also to our ambitions and bringing some goals that we've
(18:29):
had for a long time to the front. Um, and
the biggest one of those is the Young Leaders course
that we're just about to get cracking on. Um, so
we launched it, like Simon said a few weeks back
at our, um, Deafblind Awareness Week event. Um, and we've
got our first meeting with our little crew in two
(18:52):
weeks time on the 23rd of August. But, um, I
guess the most important thing to say is this is
not just a leadership for people who are deaf blind.
It's for people who have a sensory loss. So the
ones that, um, who have applied and who I still
encourage to to get in touch. Uh, 18 to 35
(19:13):
year olds who are either deaf, deaf, blind, hard of
hearing blind or vision impaired. So it doesn't need to
be a dual sensory loss. Um, and certainly some of
the people who we have accepted don't have a dual
sensory loss, but it's going to be brilliant to see
that wide array of abilities.
S1 (19:34):
So what are the aims and objectives of the project?
The programme.
S3 (19:38):
So the main objective is to build that, um, that
new voice in the deafblind space but also sensory loss space. Um,
we have some brilliant people in our community, um, who
have paved the way and have created such fantastic systems,
(19:59):
but they're getting to an age where they're wanting to retire,
where they're wanting to move on and do other things,
and we just don't have that new, that new blood,
that new, those new voices coming through. So this is
a real focus on sustainability, on succession planning, to make
sure that when those people do move on to whatever
(20:19):
they want to do, um, there's not this gaping void
and we're left, um, you know, with, with, with no
supports in place.
S1 (20:27):
So what were the program involved? Hannah?
S3 (20:31):
Uh, so the program's going to start, like I said,
on the on the 23rd of August, we're going to
have our first meeting where the the people who are
doing the course at the moment, we've got nine, which
is fantastic.
S1 (20:42):
Wow. That's great.
S3 (20:43):
Yeah, really, really exciting. Um, so we're going to come together.
They're going to meet each other for the first time.
We're going to have a bit of a brainstorm as
to what they're hoping to achieve or what they want
to get out, see some of the experience they've got in, um,
in leadership. And then, um, and then we're going to
take those, those answers, that input. Um, and we're taking
(21:06):
that away to do a bit more of the course
building because like I said, this is co-designed. So we
really want to make sure that we're hitting the needs.
We've got the money, we've got the time to get
this right. And we want to make sure that what
we set up here will not just set up these
young leaders to go out into the community, but also
perhaps give us, um, a framework which we can then
(21:29):
run a few times. Um, so, so once we've gone away, we've,
we've nutted that out, come back and we're going to
be meeting, um, regularly, whether that's fortnightly, um, or weekly
for a while. And we're going to do a retreat
and um, and then, um, the team will also be
given some assignments and a, and a project that they'll
(21:52):
present at the end of the course.
S1 (21:54):
That's fantastic. I know one of the great things that
DBS do on a regular basis is hold pub lunches.
Tell us about that. They sound like fun. I've been
to one yet, but I know people have and that's
a great idea.
S3 (22:07):
Yes, I know they're fantastic. We go do pub lunches.
We try and try and alternate south of the river.
North of the river. I mean, I'm a south of
the river person, so I do like it when it's
at the Balmoral. But, um, we do try and break
it up so that people can can come to one.
S1 (22:23):
It must be a scene. A bunch of deaf people
at the pub.
S3 (22:27):
Yeah.
S1 (22:28):
It could either be really noisy, everyone shouting at each
other or lots of hand waving.
S3 (22:31):
Yes. It's brilliant. We. We had a southwest trip recently
and we went down to the Esplanade Hotel in Busselton,
and we did get quite a few looks, but I
think it's like you say, um, Simon, when you come
to the hub and you see how, um, welcoming we are.
It's beautiful when you see the different types of communication
and the way people slow down, the way that people, um,
(22:55):
help one another. It's it's fantastic to witness.
S1 (22:58):
It is. I make mention of the pub lunch because
I also want to advertise it, but I also like
those ideas about these specific groups going out into public
spaces and the interactions that we have with the public.
In a sense, we are advocating by demonstrating that we're
(23:20):
just regular folks. We are deaf blind in this case,
and we like going to the pub and having a
lunch and a chat to some people that would sound
like extreme and weird and interesting, but it's just an
everyday occurrence.
S3 (23:31):
It is? Yeah, absolutely. People still like to go out
and have a pint or have a party. Um, and
they might just need to order it, um, a bit
differently to, to the average.
S1 (23:40):
Joe, can you tell us how people can get involved
with the leadership program, please?
S3 (23:44):
Sure. So we have like I said, we've got nine
people who have applied and who are coming along on
the 23rd of August. But I still would like to
encourage others who fit that, um, that demographic of 18
to 35 with a sensory disability to get in touch
and still, um, if you're interested in, in, in becoming
(24:06):
a leader or, um, improving their leadership skills because we
do know that life happens, um, every day and people
might need to drop off and we would hate to
lose that momentum. So, um, please still get in touch.
Go to. And, um, we have our email address in
there so you can get in contact. And please do.
S1 (24:30):
I fully encourage people to take up this opportunity. And
if they know anyone that has a sensory disability that
think they could be get involved with this type of thing,
because I've done leadership program myself and I know how
much it does build not only your own confidence, but
the confidence of people around you. And it's great to
(24:52):
contribute to your community in a positive way. And that's
what we're all about here at In Plain Sight on
Vision Australia Radio. I'd like to thank you, Hannah. We've
got to wind up our conversation quite soon. Time's running
away with us quite quickly. Um, is there anything else
you'd like to tell us about what's going on for
DB and the deafblind community in general?
S3 (25:14):
Um, no. I think that the leadership course is our biggest, um,
biggest project at the moment. But please do keep an
eye out because we are hoping to launch relaunch the
Lifetime of the Deaf and Deafblind, which is a brilliant, um,
play by Peter Block and our co, um, chairperson Eddie Szczepanik. Um,
(25:35):
and hoping to get that down to Busselton or Bunbury
in the new year. Part of the fringe festival.
S1 (25:40):
So the name of that performance piece again.
S3 (25:42):
It's called The Lifetime of the Deaf and Deafblind.
S1 (25:45):
Alright, Hannah. Well, we might finish up our conversation now.
It's been a lovely to meet you and I definitely
would like to get you in again sometime. Is there
anything else you'd like to leave us with before we
say goodbye? A note for the public to be aware
of about deaf blindness.
S3 (26:00):
Yeah, I think I'd just like to finish by saying
that deaf blindness isn't just what Helen Keller experience, which
is profoundly deaf and completely blind. Deaf blindness is a spectrum. And, um,
it really just means that both your vision and your
hearing have been impacted. So to really understand when you
(26:21):
look at, especially our aging population, how many people just
do fall into that community. And so these initiatives and
the access that we're striving for is going to be
so important to so many people at some stage of
their life.
S1 (26:38):
Yeah, indeed. And it's so important what you guys are
doing there to encourage younger people to get involved and
be involved and to show their potential and show their leadership,
and to take the banner of the leaders that have
gone part in the past to go forward.
S3 (26:57):
Absolutely.
S1 (26:57):
Yeah. So I really like to thank you, Hannah. It's
been great to have you in the studio and to
chat with you. And I really do appreciate the work
that DB are doing, and I really want to encourage
people to check that out. And I'll really encourage by
the leadership program that you guys are running and well
done and congratulations and good luck with that.
S3 (27:18):
Thanks, Simon. Thank you for the opportunity to come in.
S1 (27:20):
It's been a pleasure.
S2 (27:30):
That concludes in Plain Sight for this week. 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. Wherever you get your podcasts, or ask
your smart device to play in Plain sight by Vision
(27:52):
Australia Radio. Thanks for listening.
S1 (27:55):
Thank you.
Hello, I'm Simon Chong and welcome to In Plain Sight,
a program where we highlight people who are making a
difference and impact within the disability sector and their community.
We shine a light on those who otherwise would be
hidden in plain sight. And it's a pleasure to bring
you these programmes on a weekly basis here on Vision
Australia Radio.
S2 (00:35):
Welcome to the program. This week I'm Andrew Williams and
of course with me in the studio as every week
is Simon Chong. How are you this week, Simon?
S1 (00:43):
Hi, Andrew. I'm great. Good to see you this week
as always. Had a really busy and interesting week. I
want to start this conversation firstly with a bit of
a whinge. Sorry about that folks. It's sort of a
follow on from a conversation I was having with one
of our guests a few weeks ago, talking about how
to make things fully accessible and fully inclusive. We did
(01:07):
also mention this with our guest, Scott Holley, about how
to make the online world. The world of digital content
more accessible. And I had a frustrating experience recently when
I went on to look at a magazine that was
not accessible online. My computer did not recognize what was
(01:29):
on the screen as text. It didn't see it as words.
It saw it as images. So the fancy technology that
I use to get the computer to read out the
printed word to me so that I can access it
in an easy fashion, was not available from this website.
And I find that really frustrating. And I just want
(01:52):
to remind people, if you have anything to do with
creating content online, if you are putting on an event,
if you are trying to hold something for people with
disabilities to attend or to join in on, make sure
every aspect of that is inclusive. As was talking with
my guest a few weeks ago. Melanie, about ticketing, for instance,
(02:16):
make sure the ticketing on the website is accessible. Make
sure any content that someone needs to read is accessible,
and make sure that when you are holding an event,
the physical space is accessible. Now, if you don't know
what this means, especially on the online area, look it up.
Find out how to make your website your content available
(02:41):
for everybody and anybody with no matter what their ability
is or their disability is. And that is what we
are trying to get across to people here on this program.
In plain sight on Vision Australia Radio. On a brighter note, Andrew,
I also want to make mention of one of my
favorite guests, Eliza Hull, which I interviewed Eliza nearly 12
(03:06):
months ago at the beginning of this program. And the
reason I'm mentioning Eliza right now is that she has
just released a new single, which is her interpretation of
the Silverchair song called tomorrow. She's doing this as part
of a television program. She was asked to create a
(03:30):
this song for this particular television program, and I listened
to this song in total. I was a fan of
the song Tomorrow by Silverchair when it first came out
in the early 1990s. It's an awesome song. And of course,
Silverchair were quite the grungy, blokey, hard rock act of
(03:51):
the early 90s and fitted into that whole grunge scene.
And Eliza is the total opposite. Eliza is a beautiful, well,
expressive woman, a powerful woman in her own right, and
she gives this really hauntingly beautiful rendition of this fabulous
song tomorrow, which I highly recommend checking out on any
(04:15):
of the areas where you find your music. And Andrew,
I believe Eliza has also got some appearances live appearances
coming up in Victoria and Queensland.
S2 (04:24):
That's right. Yes. On the 23rd of August, she's appearing
at the words in Winter Festival Gala. And that's, uh,
the words in Winter Festival takes place in Hepburn Springs
in Victoria. And then on the 7th of September, there's
an appearance at the Big Love Festival in Queensland. So
there are a couple of couple of dates to look
(04:46):
out for. Sounds very exciting with this new new version
of the song. Can't wait to hear it!
S1 (04:51):
It is fabulous. And don't forget, Eliza Hull is not
only a fabulous singer, she's an author and a very
strong and proud disability advocate. Well worth checking out, as
is our guest for today, Hannah Makepeace, who is a
deaf blind advocate and one of the things she talked
(05:12):
about within the interview was a performance that happened a
few years ago at the Perth festival. Andrew, you got
the details of that performance in front of you there,
haven't you?
S2 (05:21):
Yes, it's it's called the lifetime of deaf and deaf Blind.
And it was on Perth Fringe last year in February.
And it's it sounds absolutely fascinating. And in the interview
Hannah talks about hopefully a remounting that production. So with
a bit of luck all the funding will come through
for that. So I'd really look forward to to seeing that.
(05:43):
It was a terrific performance with Eddie Stepanek. And he's
also the the deputy chair of DBS. And the creator
of the show is Peter Blockey. So that'll be an
interesting one to see if it if it gets up
again really deserves to to be getting another outing.
S1 (06:04):
I had a really fabulous conversation with Hannah, which I
really enjoyed. And one of the things we are focusing
on within that conversation is the DB youth project, which
we'll find out all about, and I hope you enjoy
listening to that coming up.
S2 (06:21):
We have a great range of guests on the program,
and so if you have any ideas or suggestions of
guests or story ideas for future programs, we'd love to
hear from you. You can get in touch with us
here at the program at In Plain Sight at Vision Australia.
And now he's the interview with Hannah.
S1 (06:42):
And this week's guest is Hannah Makepeace. And she is
the chairperson for Deafblind Western Australia. I'd like to welcome
Hannah to the studio now. Hello, Hannah.
S3 (06:51):
Thanks, Simon. Thank you for having me here. I'm really excited.
S1 (06:53):
Yeah. Can you firstly tell us a little brief summary
of what deafblind Western Australia is and what it's all about?
S3 (06:59):
Yeah. So deafblind West Australians DB um, we're the only
peer support group for people living with deaf blindness or
dual sensory loss in Western Australia. um where a PR
run um group. So everyone on um, on the organising
committee is related to Deafblindness in some way, whether that's
(07:20):
a person living with Deafblindness or, or a family of um,
and it really it provides connection and community to a
very vulnerable, um, demographic.
S1 (07:31):
Are there branches affiliations in other states?
S3 (07:35):
Yeah, we do, um, loosely, uh, not in any official capacity,
but we do have, um, a strong connection with deafblind Victoria. Um, also, um,
there's the deafblind group in Hunter Valley and then more broadly,
Deafblind Australia, who are very much involved.
S1 (07:52):
And Hannah, how long have you been involved with DBS?
S3 (07:57):
Uh, so I came into DBS as, um, in an
official capacity in 2023. Um, it was leading in from
myself becoming deafblind, um, two years previous to that. So
because I have a condition called neurofibromatosis type two NF2
(08:18):
to be easier, um, I have, um, lost my hearing. Um,
so I'm profoundly deaf, and I have, um, vision loss. So, um,
I was looking for a space that supported my needs.
And through that, I came across DBS and, um, saw
that I'd be able to help them and got involved.
S1 (08:41):
So tell us briefly what the name of that condition
once again, and how it how it came upon you
and how it affects you.
S3 (08:47):
Yeah. So, um, neurofibromatosis type two, NF2 um, it's a
rare genetic condition that, um, I got diagnosed with when
I was 29. Um, I hadn't heard of it before, but, um,
it's doesn't run in my family, so it's just me.
And what it means is, um, I produce too much
(09:09):
myelin Milan on my nerves. So I have benign tumors
along my nervous system. But the ones that are really, um, important,
I guess, are the ones on my auditory nerve. Um,
so they get to a certain size, and, um, they
have to sever the nerve to get out the tumors,
and then that leaves you profoundly deaf.
S1 (09:30):
So in a really naive summary of that is that
you have this condition that affects your nerves, which creates tumors,
and the tumors then affected your hearing and your vision.
S3 (09:42):
Yes. And, um, it also, um, when, when they sever
the nerve, um, it severs your vestibular system too. So
it affects balance, vision and hearing.
S1 (09:53):
Gosh. And you said you were diagnosed at. At age what?
S3 (09:56):
29.
S1 (09:57):
And how old are you now?
S3 (09:59):
I'm now 39.
S1 (10:00):
Okay. Ten years?
S3 (10:01):
Yep. Yeah. So five years after diagnosis. I had the
first surgery, and then one year later, I had the second.
So it was a big change.
S1 (10:10):
It would be now. I say this to a lot
of guests, and I try not to be patronizing when
I say this, but to me, ten years doesn't sound
very long. So my hat goes off to you for
getting to where you are and then putting yourself now
into a leadership role for this organization.
S3 (10:29):
Thanks for that, Simon. Yeah. It's not it's not very
long to get your head around it. I think the
thing that really helped was, um, I was a teacher
of students with disabilities, so I'd already been in that
space for quite some time when I was diagnosed. It's
a very different thing to to become, um, on a,
you know, to become disabled in a way. Um, but
(10:50):
it wasn't as, um, scary, I guess, in a way.
S1 (10:54):
So what is your line of work nowadays, Hannah?
S3 (10:58):
Uh, nowadays I do part time work at census, um,
as a deafblind educator. So, um, census, we are a
disability service provider, but they are the only provider in
our state that, um, that has deafblind services. So I
work part time there, um, supporting other people and supporting schools. Um,
(11:23):
and then the rest of the time I have my
own disability consulting business. It's just me and I, um,
sort of go out and, um, talk to organizations, hospitals,
universities on how to make communication accessible.
S1 (11:37):
We'll have to get you in again sometime just to
talk about that role in itself, because I find that
is a really important role. And there are a lot
of people that put themselves in that role with no
real experience in anything apart from that. They have a
disability and they think they can advise other people with
disabilities how to do stuff. Now, just touching on census
(11:59):
there for a minute, because I find that fascinating, because
I know a little bit about their background, because they
did start initially as a service for the deaf blind
many years ago. Is that correct?
S3 (12:12):
Yes.
S1 (12:13):
And I think it's fabulous because when I went to
a function that deaf blind Western Australia put on some
time ago for the acknowledgement of Deaf Blind Week, which
revolved around Helen Keller's birthday, I found it a really
moving and impacting event because as a lot of people
(12:34):
would imagine, having that dual sensory loss must be a
very isolating thing for many people.
S3 (12:41):
Yes. We're really fortunate at that event to have the
Minister for disability, Hannah Beazley, there. Um, and sensors and
Diwa ran that together. Um, and it really does help
having sensors on board. We have a very close alliance there,
and they support us in a lot of these events. Um,
(13:04):
because we just wouldn't have the sort of support to
do that on our own. And like you say, Simon,
it's such a it can be such an isolating disability, um,
really falling between the cracks of blindness or deafness when
you don't have the other sense to compensate. Um, it
can be, um, really, really cut off from many services.
S1 (13:27):
Indeed. And I think it's fabulous to support organisations like DBS.
Like you say, it's peer led. So what that means
to people is that they understand that terminology. It means
that everyone involved is either living with deaf blindness or,
and a supporter of, or an ally of, or a
family member of, and they're there to support one another
(13:51):
and I'm there to support them. And so just quickly,
can you tell us a couple of things that DBS
do for their clientele?
S3 (14:00):
Yeah. So DB um, we have I guess the biggest
thing is that we have the hub, which is um,
every fortnight at the rise in Maylands. Um, on a
Wednesday we have a drop in centre, um, which goes
from 1230 to 330. And during that we do basic
Auslan class social haptics. And then we will almost always
(14:23):
have a guest speaker coming out to speak to the
community about, um, different, different areas. So we've got people
come and speak to us when we've got our elections
coming up. We have the Electoral Commission come in, we
have palliative care. WA come in to speak about, you know,
how to do, um, power of guardianship or um, advanced
(14:45):
care planning. We have fun things, craft. We have lots
and lots and lots of, um, disability service providers come
out and share their services with us. So it's a
really important part. And that's probably the integral, um, meeting
point of dvwa.
S1 (15:03):
We have had guests in before that have represented deaf,
blind Western Australia. That was Deb and Lenny and Lenny
explained quite briefly, and I'd like you to explain it
again what haptics are.
S3 (15:16):
Haptics. So social haptics, um, it's a way of communicating, um,
to someone who has a dual sensory loss. Um, it
could be as simple as, um, it's so, so it's
through touch because it's tactile, but it could be as
simple as rubbing the person's arm to let them know that, um,
people are enjoying the activity they're doing. So I have people, um,
(15:41):
help me when I'm presenting because I can't I don't
get that feedback from the audience. I can't hear if
they're laughing or if they're nodding or, um, if they're clapping.
So I'll have someone. Often it is Lenny who stands
and rubs my back in certain different ways, or taps
to let me know that what I'm saying is resonating.
(16:01):
Or if people are laughing and she'll hold my, um,
arm to let me know not to talk over someone
who's asking a question, because I don't have that cue.
So social haptics are a fantastic way of connecting, um, and, uh,
making sure that the, the person who is deafblind knows
that you're there.
S1 (16:21):
How do people get in touch with DBS if they
have someone in their life or they're somehow connected with
deaf blindness, how would someone get involved?
S3 (16:30):
Um. Fantastic. So we we do have a Facebook page,
but mainly so deaf blind West Australian Facebook page. But, um,
I guess the main form is through our website which
is just DBS. And we've got lots of contact details
on there. I would also recommend, um, checking out coming
(16:51):
down to the hub on a Wednesday if you're able,
but definitely the the website or the Facebook page of
where we get most traction.
S1 (16:58):
I have been to the hub a couple of times,
and I found it not only fascinating and really interesting,
but I was really warmed by the great welcoming community
spirit that was on show there and how personable and
welcoming everybody was. It was a really nice thing. Just
(17:20):
before I go on to the next bit, I also
wanted to say for those listening to the podcast, we
will have the information about DB in the podcast description.
Should just look in there or get in contact with
us at In Plain Sight at Vision Australia. That's our
email address in plain sight at Vision Australia.
S2 (17:42):
You're listening to In Plain Sight on Vision Australia Radio
with Simon Chong and me. Andrew Williams. Our guest on
the program this week is Hannah MC Percy, who is
chairperson of deafblind. And now it's back to Simon and Hannah.
S1 (17:57):
What I wanted to talk to you about today is
the youth project that DBS have launched, and can you
tell us about that project and what it's all about, please?
S3 (18:08):
Yeah, absolutely. We're really excited about this. So, um, DB,
we're really fortunate that we were successful in, um, getting
the peer support and self-advocacy grant last year. That's really been, um,
a huge boost to not just our bank account, but
also to our ambitions and bringing some goals that we've
(18:29):
had for a long time to the front. Um, and
the biggest one of those is the Young Leaders course
that we're just about to get cracking on. Um, so
we launched it, like Simon said a few weeks back
at our, um, Deafblind Awareness Week event. Um, and we've
got our first meeting with our little crew in two
(18:52):
weeks time on the 23rd of August. But, um, I
guess the most important thing to say is this is
not just a leadership for people who are deaf blind.
It's for people who have a sensory loss. So the
ones that, um, who have applied and who I still
encourage to to get in touch. Uh, 18 to 35
(19:13):
year olds who are either deaf, deaf, blind, hard of
hearing blind or vision impaired. So it doesn't need to
be a dual sensory loss. Um, and certainly some of
the people who we have accepted don't have a dual
sensory loss, but it's going to be brilliant to see
that wide array of abilities.
S1 (19:34):
So what are the aims and objectives of the project?
The programme.
S3 (19:38):
So the main objective is to build that, um, that
new voice in the deafblind space but also sensory loss space. Um,
we have some brilliant people in our community, um, who
have paved the way and have created such fantastic systems,
(19:59):
but they're getting to an age where they're wanting to retire,
where they're wanting to move on and do other things,
and we just don't have that new, that new blood,
that new, those new voices coming through. So this is
a real focus on sustainability, on succession planning, to make
sure that when those people do move on to whatever
(20:19):
they want to do, um, there's not this gaping void
and we're left, um, you know, with, with, with no
supports in place.
S1 (20:27):
So what were the program involved? Hannah?
S3 (20:31):
Uh, so the program's going to start, like I said,
on the on the 23rd of August, we're going to
have our first meeting where the the people who are
doing the course at the moment, we've got nine, which
is fantastic.
S1 (20:42):
Wow. That's great.
S3 (20:43):
Yeah, really, really exciting. Um, so we're going to come together.
They're going to meet each other for the first time.
We're going to have a bit of a brainstorm as
to what they're hoping to achieve or what they want
to get out, see some of the experience they've got in, um,
in leadership. And then, um, and then we're going to
take those, those answers, that input. Um, and we're taking
(21:06):
that away to do a bit more of the course
building because like I said, this is co-designed. So we
really want to make sure that we're hitting the needs.
We've got the money, we've got the time to get
this right. And we want to make sure that what
we set up here will not just set up these
young leaders to go out into the community, but also
perhaps give us, um, a framework which we can then
(21:29):
run a few times. Um, so, so once we've gone away, we've,
we've nutted that out, come back and we're going to
be meeting, um, regularly, whether that's fortnightly, um, or weekly
for a while. And we're going to do a retreat
and um, and then, um, the team will also be
given some assignments and a, and a project that they'll
(21:52):
present at the end of the course.
S1 (21:54):
That's fantastic. I know one of the great things that
DBS do on a regular basis is hold pub lunches.
Tell us about that. They sound like fun. I've been
to one yet, but I know people have and that's
a great idea.
S3 (22:07):
Yes, I know they're fantastic. We go do pub lunches.
We try and try and alternate south of the river.
North of the river. I mean, I'm a south of
the river person, so I do like it when it's
at the Balmoral. But, um, we do try and break
it up so that people can can come to one.
S1 (22:23):
It must be a scene. A bunch of deaf people
at the pub.
S3 (22:27):
Yeah.
S1 (22:28):
It could either be really noisy, everyone shouting at each
other or lots of hand waving.
S3 (22:31):
Yes. It's brilliant. We. We had a southwest trip recently
and we went down to the Esplanade Hotel in Busselton,
and we did get quite a few looks, but I
think it's like you say, um, Simon, when you come
to the hub and you see how, um, welcoming we are.
It's beautiful when you see the different types of communication
and the way people slow down, the way that people, um,
(22:55):
help one another. It's it's fantastic to witness.
S1 (22:58):
It is. I make mention of the pub lunch because
I also want to advertise it, but I also like
those ideas about these specific groups going out into public
spaces and the interactions that we have with the public.
In a sense, we are advocating by demonstrating that we're
(23:20):
just regular folks. We are deaf blind in this case,
and we like going to the pub and having a
lunch and a chat to some people that would sound
like extreme and weird and interesting, but it's just an
everyday occurrence.
S3 (23:31):
It is? Yeah, absolutely. People still like to go out
and have a pint or have a party. Um, and
they might just need to order it, um, a bit
differently to, to the average.
S1 (23:40):
Joe, can you tell us how people can get involved
with the leadership program, please?
S3 (23:44):
Sure. So we have like I said, we've got nine
people who have applied and who are coming along on
the 23rd of August. But I still would like to
encourage others who fit that, um, that demographic of 18
to 35 with a sensory disability to get in touch
and still, um, if you're interested in, in, in becoming
(24:06):
a leader or, um, improving their leadership skills because we
do know that life happens, um, every day and people
might need to drop off and we would hate to
lose that momentum. So, um, please still get in touch.
Go to. And, um, we have our email address in
there so you can get in contact. And please do.
S1 (24:30):
I fully encourage people to take up this opportunity. And
if they know anyone that has a sensory disability that
think they could be get involved with this type of thing,
because I've done leadership program myself and I know how
much it does build not only your own confidence, but
the confidence of people around you. And it's great to
(24:52):
contribute to your community in a positive way. And that's
what we're all about here at In Plain Sight on
Vision Australia Radio. I'd like to thank you, Hannah. We've
got to wind up our conversation quite soon. Time's running
away with us quite quickly. Um, is there anything else
you'd like to tell us about what's going on for
DB and the deafblind community in general?
S3 (25:14):
Um, no. I think that the leadership course is our biggest, um,
biggest project at the moment. But please do keep an
eye out because we are hoping to launch relaunch the
Lifetime of the Deaf and Deafblind, which is a brilliant, um,
play by Peter Block and our co, um, chairperson Eddie Szczepanik. Um,
(25:35):
and hoping to get that down to Busselton or Bunbury
in the new year. Part of the fringe festival.
S1 (25:40):
So the name of that performance piece again.
S3 (25:42):
It's called The Lifetime of the Deaf and Deafblind.
S1 (25:45):
Alright, Hannah. Well, we might finish up our conversation now.
It's been a lovely to meet you and I definitely
would like to get you in again sometime. Is there
anything else you'd like to leave us with before we
say goodbye? A note for the public to be aware
of about deaf blindness.
S3 (26:00):
Yeah, I think I'd just like to finish by saying
that deaf blindness isn't just what Helen Keller experience, which
is profoundly deaf and completely blind. Deaf blindness is a spectrum. And, um,
it really just means that both your vision and your
hearing have been impacted. So to really understand when you
(26:21):
look at, especially our aging population, how many people just
do fall into that community. And so these initiatives and
the access that we're striving for is going to be
so important to so many people at some stage of
their life.
S1 (26:38):
Yeah, indeed. And it's so important what you guys are
doing there to encourage younger people to get involved and
be involved and to show their potential and show their leadership,
and to take the banner of the leaders that have
gone part in the past to go forward.
S3 (26:57):
Absolutely.
S1 (26:57):
Yeah. So I really like to thank you, Hannah. It's
been great to have you in the studio and to
chat with you. And I really do appreciate the work
that DB are doing, and I really want to encourage
people to check that out. And I'll really encourage by
the leadership program that you guys are running and well
done and congratulations and good luck with that.
S3 (27:18):
Thanks, Simon. Thank you for the opportunity to come in.
S1 (27:20):
It's been a pleasure.
S2 (27:30):
That concludes in Plain Sight for this week. 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. Wherever you get your podcasts, or ask
your smart device to play in Plain sight by Vision
(27:52):
Australia Radio. Thanks for listening.
S1 (27:55):
Thank you.
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