September 16, 2024 • 22 mins
Originally recorded in October 2021.
n this special replay, we revisit one of my favourite conversations with Carly Findlay. Carly’s journey as a writer, speaker, and activist has not only shaped disability advocacy in Australia but also inspired countless people globally.
If you missed this episode the first time, now’s your chance to hear how Carly uses her platform to challenge perceptions and break down barriers for people with disabilities. Listen in for powerful reflections on advocacy, identity, and the power of storytelling.
Connect with Carly:
Instagram: https://www.instagram.com/carlyfindlay/?hl=en
Website: https://carlyfindlay.com.au
Carly's Books:
Growing Up Disabled in Australia: https://www.blackincbooks.com.au/books/growing-disabled-australia
Say Hello: https://www.booktopia.com.au/say-hello-carly-findlay/book/9781460755037.html
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:https://www.icantstandpodcast.com
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
Hello, and welcome to the I Can't Stand Podcast. The
podcast answering your questions on what life is like when
you have a disability. My name is Peter and every
week I'm your host. I had several palsy and I'd
love to answer your questions. Increasing understanding of what it's
(00:23):
like to live with a disability is what I'm all about.
This week, I have such an amazing interview for you.
It's with Carlie Finlay. And if you don't know who
Carli Finley is, where have you been? She is one
of the biggest disability advocates we have here in Australia.
I so enjoyed this chat with Carli and I really
(00:47):
hope you do too. Without any further ado, let's get
into it.
Speaker 2 (01:03):
Hi, I'm Carlie Finlay.
Speaker 1 (01:05):
For people who don't know, you're a disability advocate, award
winning writer and you also have the Order of Australian Medal.
Is that right?
Speaker 2 (01:15):
I do? I do have the Order of Australia Medal.
I've any worn it once. Yeah. I am a writer
and speaker as well, and I'm also an arts worker.
I work part time at Melbourne Fringe as the Access
Advisor talking to artists about making their shows accessible and
helping the wider industry do so. Yeah, very cool.
Speaker 1 (01:37):
So how did you become a disability advocate, Karli?
Speaker 2 (01:41):
It just happened through doing. I guess like it's a
very long time until I identify it as disabled, even
though I've had the a skin condition called ichthyosis, even
though I've had that all my life. When I grew
up in the eighties and nineties, I just saw disability
is very narrow, very you know. What we saw on
(02:01):
TV was sort of what I thought disability was. So
I saw paralympians and I saw really awful stories about
disabled people on the Current Affair, and that was my
extent of you know, media representation. Unfortunately, and it wasn't
until I was about twenty five twenty six. I went
(02:24):
to my dermatologist and I said, how can I work
with young people around body image and confidence and you know, advocacy,
And he put me in touch with the Chronic Illness
Peer Support program at the Children's Hospital. That really showed
me how while we have different diagnoses, we have very
similar experiences. So lots of time of school, lots of
(02:46):
time of work, and also the barriers sort of that
we encounter, you know, the discrimination levels were very similar
concurrent to that. I was, you know, blogging. I had
been blogging for a long time, but I started blogging
properly when I was doing a Master of Communication and
I started writing about ichthiosis, and then I started writing
(03:07):
more about chronic illness and disability. And the more I think,
the more you write, the more you research, and the
more you learn about yourself and about others. And so
that really taught me a lot. That led to writing
the Big Government, and that led to writing for the
ABC Mamma Mia and then speaking and that is what
(03:31):
led to this. Yeah.
Speaker 1 (03:33):
And I have to say, through researching for this interview, Caligue,
we have a lot in common. Not only are we
in the noncurable club, we are also both only children. Yes,
And I also didn't identify as having a disability, even
though I'm sitting here in a wheelchair with cerebral palsy
(03:53):
that I've had from birth, because like you, only in
my childhood, really disability was presented to me as a
negative thing. So I didn't want to be disabled. And
I even to this day really struggle with my identity
because it's reconfirmed to me the negative connotations with having
(04:16):
a disability constantly, including the low expectations, and that was
definitely confirmed to me even this week with the SPS
documentary that said what does Australia think about disability? And
to be honest, it was really really hard to watch,
you know. And that's where I think what you do
is really important, because we both highlight that you can
(04:40):
be happy to have a disability and the hard things
that we encounter in having a disability isn't anything really
to do with our disabilities. It's society and their attitudes
towards us.
Speaker 2 (04:56):
Absolutely. I mean, I don't I think, you know, documentaries
like that. I haven't watched it. It's on my list.
Documentaries like that are very important to highlight the ablism,
but also does it then perpetuate the stuff that we
were seeing when we were younger. You know, I don't
think that we should only be fed inspiration pawn, which
(05:17):
is the objectification of disabled people for non disabled people.
But I also feel like there needs to be some
joyous stories. There doesn't always need to be that reinforcement
of negative stereotypes to prove discrimination. And yeah, I do
wonder just how far we've come when we're constantly needing
(05:38):
to trade in our trauma.
Speaker 1 (05:41):
Yeah, there was definitely some positives to the documentary, and
I'm really happy that we're still our voices of being
heard on mainstream media because, as you know, that's quite
important to a lot of us with media representation. You're
known for your amazing fashion set.
Speaker 2 (06:01):
Thank you.
Speaker 1 (06:02):
Why do you wear the items that you do?
Speaker 2 (06:05):
When I was younger, I would say until I was
about thirty, maybe, so what nearly ten years ago. I
never really wanted to stand out more than I already did,
and so I reckoned It would have been probably around
the time I got married, which was in twenty sixteen.
I wore a I wore two white dresses, actually, but
(06:30):
I had this really great jacket, a really great floral
jacket that I wore, so I had three jackets and
two dresses. I wore that jacket over my dress during
the photography and then in the you know, dinner, and
then I got changed into my other dress, which had
sequence on it. And the other thing that happened was
(06:51):
in twenty sixteen, I took leave without pay from my
government job, so I had to I had the government
we had to dress somewhat, you know, more conservatively, and
I just started working more for myself and I could
just wear what I wanted, you know. But I also
(07:11):
like it's the presence of Instagram, especially that I'm passionate
about because it shows brands that I wear their clothes.
So many people will say it's because of me they've
decided to wear something, or buy something, or be more
colorful in their choices or bold in their choices. I'm not,
(07:33):
you know, I'm not pushing capitalism in an evil way
or anything. I'm not demanding people buy stuff. But it
is nice to know that people are, you know, being
more daring with their clothes because they've seen what I'm wearing. Also,
I really like supporting small business. So this top, for example,
is by Let's Got All Faces on It, by a woman,
(07:55):
and she has a brand called Rathema Tat buying from
a smaller label that you're giving to that you know,
one person or a few people that work in the company,
and supporting small business, and that's been really nice. Yeah.
Speaker 1 (08:11):
Absolutely, And for me, fashion is a form of self expression.
So you will never see me or hardly ever see
me in black. It's just not me. And for me.
I think it was a technique or a mechanism for
people to see me before they see in my wheelchair. Absolutely,
And I really do love when people come up and
(08:32):
comment on my outfit or my handbag rather than commenting
on my disability or asking me why I can't walk.
So yeah, it's funny how fashion can be so important
for so many different reasons. What do you love about
having a disability?
Speaker 2 (08:50):
I really like the community. I think that the disability
community is really strong and really supportive mostly and I'm
not saying that everyone has to do this, but I
feel like in having a disability, you're more likely maybe
to talk up about injustices around disability and other human
(09:13):
rights issues. Personally, my disability ichthiosis, it means that my
skin renews itself like twenty five twenty eight times faster
than everyone else's, you know, most other people. So I
look for a young you do. I got invited to
this Score reunion and Score was awful, and I was
(09:35):
in this group chat and it was just like being
back at school. Every time I'd say something, you know,
I'd get just no response. Crickets, And then you know,
someone else will jump in and change the subject. And
I got a photo of me at school so you
know then twenty years ago, and a photo of me
(09:56):
then as well, and put it in a photo collars
show one photo next to the other, and I said, Hey,
I've just come across this old photo from high school
and I haven't aged a bit. I'd love to see
how you've aged.
Speaker 1 (10:11):
Even if people don't view odd disabilities as a positive,
the way we can empower ourselves by viewing it as
a positive, I think is really important. Growing Up Disabled
in Australia beautifully illustrates the diversity of the disability community.
What was the motivation for you collaborating in this book.
Speaker 2 (10:31):
Yes, so Growing Up to Sabled in Australia is an anthology.
It's got forty six writers in it and me my
aim for the book was to bring writers that we
haven't heard of before and writers that we have heard
of before, but really show the diversity of disability. So
in the book there's lots of different types of disability,
(10:52):
but also like a really intersectionality of who's in the books.
So there's people from the trans community, people Aboriginal people,
people who are migrants, people whose English isn't the first language.
Deaf people, intellectually disabled people. It was really important to
me had to have a real big cross section of people,
and we actually have more women and non binary people
(11:14):
than we do men, and we have yet it's a
really diverse range of different voices and also have different
types of ways that they could tell their story. So
there's people who have written poems and people have drawn illustrations.
We've got interviews as well, people who I've interviewed and
who were interviewed. Yeah.
Speaker 1 (11:37):
I was first introduced to you through your first book,
Say Hello, and it's so resonated with me, which I'm
sure is no surprise to you, because like you, I
get asked questions a lot, but it's part of my
job now and I actually don't mind being asked questions.
But what I do relate to is the emotional labor
that we all go through having to answer the same
(11:59):
question over and over again, which is why the podcast
was born, because I thought there's got to be a
more efficient way to do this. Is there a question, though,
that you wish that you are asked more often?
Speaker 2 (12:11):
The title of the books Say Hello, it was called
is called that because it's an invitation for people to
say hello, rather than you know, launching into inappropriate questions.
When I go into a store, for example, or a
restaurant or whatever, I noticed that I'm treated very differently
to the person, the customer in front of me or
behind me. You know, they're often not asked why they
(12:33):
look the way they do. They're often not ignored, They're
often not looked at in horror, and so it was
really an invite for that. So the question I would
like to be asked is more like how are you
or you know, rather than the launching into what's wrong
with you? Or why are you so sun band? Or
(12:54):
why why do you look like that? Quite like it
when people ask if you're okay to talk about this,
like if you don't mind me asking, you know, why
is your face read? Or if you don't mind me
asking my child wants to know this or whatever. I
think that that preface is quite good.
Speaker 1 (13:14):
Employment and education are two areas that I believe define
a person's future. Why do you think, particularly around employment,
there is still such a lack of opportunities and so
many attitudinal barriers towards disabled people.
Speaker 2 (13:30):
I think that people have such a low expectation of
disabled people. But I also think that workplaces aren't set
up for truth flexibility. Perhaps they are better now through
the pandemic where we can work from home, but you
know a lot of jobs ask you to work full
time or to have a driver's license. Some disabled people
can't manage that. Also, there's the lack of accessibility provisions,
(13:55):
like the cost of accessibility provisions. Firstly, I know that
there's job access that they only provide up to six
thousand dollars a year to get supported, and you also
have to work more than thirteen weeks a year. I
see this a lot with artists who might you know,
have a contract with a venue or an art organization
(14:17):
for twelve weeks where they're rehearsing and creating their thing
and then performing, and so they're not eligible for job access.
But then also like when you get into an organization,
I feel like there's either the need to disclose or
the fact that you and I can't help butt disclose,
(14:37):
you know, And so that's really hard as well. Like
I don't think either way it has got it easy.
I feel like sometimes when I see people sort of
defend having the invisible disability is harder than having a
visible one. I just don't think that there should be
a competition or comparison there because we all have it differently,
like you and I can't help but disclose when we and.
Speaker 1 (14:59):
You know, but neither of us know what it's like
for the other persons exactly.
Speaker 2 (15:03):
But I also think that there are elements of a
visible disability that are invisible as well, Like there's lots
of things that you can't see about my condition and
probably similar with yours. So it can be very very
hard to raise accessibility without talking about the condition. Like
we by law, you don't have to disclose your disability
to ask for accessibility, except then when you apply for
(15:23):
job access you know, you might need letters from your
doctor and all of that, and that becomes like medical
model of disability, which is just so there's that. But
I also think that I would love to see more
disabled people, like in leadership positions. You know, where are
these people? Why why isn't there more disabled people in parliament?
Why isn't there more disabled people, you know, leading in
(15:45):
the media, and just so many aspects of you know,
so many sectors that just are lacking with disabled people.
But then there are really great, you know, places I work,
As I said, I work part time at Melbourne Free.
I really really enjoy it there. I feel very valued.
I feel like I can raise things and that they
really absolutely know the heavy lifting that we as marginalized
(16:08):
people do. One of the things that I really like
about where I work is that we have questions, specific
questions on the interview, in the interview process and also
before the interview process about access snakes, and people have
said that they've never been asked this before.
Speaker 1 (16:25):
You know, that's great just by.
Speaker 2 (16:27):
Welcoming people like that. One of the things I didn't
know when I started until I started at Fringe was
I filled out this Fair Work Australia form, but there
was a statement on the form that said if you
are like a mother of a child, or a parent
of a child under two, if you are disabled or
(16:48):
chronically ill. There were all these things that you could
use as a reason to go part time. And I
never knew this because when I was working for the government,
I asked if I could go part time. Back probably
when I was like twenty four or twenty five, I
was really having a struggle with part time a full
time work and not really enjoying the work. But also
my skin just got so sore, and I remember asking
(17:10):
if I could go four days a week or and
they said no. So this statement was on this on
this fair work form, and I'm like, oh my god,
I never knew this. Like seriously, if I had known,
then I probably could have used that. I mean, I
think it's in up to the employer's discretion, but still like,
and it did only come in in two thousand and nine,
(17:31):
I believe, so I'd asked them before that, but still, like,
I just there were so many times that I thought
it would make my life so much easier if I
did not work five days a week, and I didn't
know that I could, you know, ask.
Speaker 1 (17:46):
And that often just illustrates how we have to you
know a lot of the time when we face challenges,
we face them alone. Yeah, because there's nobody else in
the you know, in where we work having a disability
that understand to be able to go to to say, hey,
how do I get down to four days a week?
Speaker 2 (18:06):
Exactly? Exactly. And I think one of the things that
I've been doing is really being mindful when we get
you know, when we get a disabled person start work
or an artist. So I'm really keen on just saying, hey,
how's it going, Do you need any help? Do you
want to talk this through or whatever? Because that's really
important to show someone else that they're not alone, that
they're you know, I mean, they might not strongly identify
(18:29):
as being disabled as I do, but just for them
not to not to feel alone and to feel supported
and that they can ask questions, that's really important to me. Yeah.
Speaker 1 (18:39):
So my last question, what do you hope for someone
with a disability? What do you think would be like
for them in the future if you if you could
wave a wand and it could be you know, in
the next ten years. What do you hope for for
us and other people?
Speaker 2 (18:55):
Well? I do hope we're not in the middle of
a global pandemic.
Speaker 1 (18:59):
We do.
Speaker 2 (19:01):
I think that there's going to be a surge in
people like adults identifying us this disabled because I'm seeing
such a strong identity amongst young people, children, teenagers, young adults,
and I'm just finding that amazing, and not only like
with disability, but a whole range of intersectional identities like
(19:22):
specifically lgbti QA and people, you know, First Nations people,
just seeing so much strength in that, and I feel
like that will happen with disabled people as well. You know,
I do work with White House, which is the Youth
Disability AVOCAUSEY service, and to see these young people just
are in their identity and want to become better advocates
(19:44):
and want to know how to talk about disability and
their own disability and others, it's really great. So I
think that would be great. I really hope that when
we are seeing disability in the media, it's not limited
to like a five minute shadow about someone promoting their book.
Like I'm grateful for doing that on air, but if
(20:05):
that's the only time I'm going to be invited onto TV,
you know, I want to chat about more things. I
want to do more stuff, and I don't only want
to talk about disability either. You know. I got asked
to do a really great panel in at Ulbard Writers
Festival in Bali, and it was about fashion and activism
and it was just so fun doing that. Of course,
(20:25):
we mentioned disability, but I didn't have to talk about
you know, a lot of disability stuff and it was great.
But I also feel like there will be way more
support for people. We're seeing lots of grassroots roots movements.
The Disability Justice Network is amazing. You know, it's been
set up by Van Omalley Herman's who's a young First
(20:47):
Nations woman and just incredible work supporting people from the
grassroots level. So that's really great. And I think that
we're just seeing much more media round, like self made
media that leads to to mainstream media, and I think
that's really really really great. But I think it is
(21:08):
changing slowly. You know, we've got like Kurt Fernlely did
the amazing one plus one series on the ABC, not
only talking about disability, but that incidental stuff of just
being you know, just being present. That's really important. That's
what I want to see.
Speaker 1 (21:23):
Well, thank you so much, Calie. I thoroughly enjoyed this chat.
I hope you did too. You've certainly brightened my day
in lockdown. Thank you so much for being here problem.
Speaker 2 (21:32):
It was really lovely to talk to you.
Speaker 1 (21:37):
Thank you for listening to this week's podcast. I hope
you enjoyed it. If you did, can I encourage you
to leave a rating and review if you listen on
Apple Podcasts, or share the podcast on social media or
with a friend. Until next week, have a good one everyone. Bye,
Hello, and welcome to the I Can't Stand Podcast. The
podcast answering your questions on what life is like when
you have a disability. My name is Peter and every
week I'm your host. I had several palsy and I'd
love to answer your questions. Increasing understanding of what it's
(00:23):
like to live with a disability is what I'm all about.
This week, I have such an amazing interview for you.
It's with Carlie Finlay. And if you don't know who
Carli Finley is, where have you been? She is one
of the biggest disability advocates we have here in Australia.
I so enjoyed this chat with Carli and I really
(00:47):
hope you do too. Without any further ado, let's get
into it.
Speaker 2 (01:03):
Hi, I'm Carlie Finlay.
Speaker 1 (01:05):
For people who don't know, you're a disability advocate, award
winning writer and you also have the Order of Australian Medal.
Is that right?
Speaker 2 (01:15):
I do? I do have the Order of Australia Medal.
I've any worn it once. Yeah. I am a writer
and speaker as well, and I'm also an arts worker.
I work part time at Melbourne Fringe as the Access
Advisor talking to artists about making their shows accessible and
helping the wider industry do so. Yeah, very cool.
Speaker 1 (01:37):
So how did you become a disability advocate, Karli?
Speaker 2 (01:41):
It just happened through doing. I guess like it's a
very long time until I identify it as disabled, even
though I've had the a skin condition called ichthyosis, even
though I've had that all my life. When I grew
up in the eighties and nineties, I just saw disability
is very narrow, very you know. What we saw on
(02:01):
TV was sort of what I thought disability was. So
I saw paralympians and I saw really awful stories about
disabled people on the Current Affair, and that was my
extent of you know, media representation. Unfortunately, and it wasn't
until I was about twenty five twenty six. I went
(02:24):
to my dermatologist and I said, how can I work
with young people around body image and confidence and you know, advocacy,
And he put me in touch with the Chronic Illness
Peer Support program at the Children's Hospital. That really showed
me how while we have different diagnoses, we have very
similar experiences. So lots of time of school, lots of
(02:46):
time of work, and also the barriers sort of that
we encounter, you know, the discrimination levels were very similar
concurrent to that. I was, you know, blogging. I had
been blogging for a long time, but I started blogging
properly when I was doing a Master of Communication and
I started writing about ichthiosis, and then I started writing
(03:07):
more about chronic illness and disability. And the more I think,
the more you write, the more you research, and the
more you learn about yourself and about others. And so
that really taught me a lot. That led to writing
the Big Government, and that led to writing for the
ABC Mamma Mia and then speaking and that is what
(03:31):
led to this. Yeah.
Speaker 1 (03:33):
And I have to say, through researching for this interview, Caligue,
we have a lot in common. Not only are we
in the noncurable club, we are also both only children. Yes,
And I also didn't identify as having a disability, even
though I'm sitting here in a wheelchair with cerebral palsy
(03:53):
that I've had from birth, because like you, only in
my childhood, really disability was presented to me as a
negative thing. So I didn't want to be disabled. And
I even to this day really struggle with my identity
because it's reconfirmed to me the negative connotations with having
(04:16):
a disability constantly, including the low expectations, and that was
definitely confirmed to me even this week with the SPS
documentary that said what does Australia think about disability? And
to be honest, it was really really hard to watch,
you know. And that's where I think what you do
is really important, because we both highlight that you can
(04:40):
be happy to have a disability and the hard things
that we encounter in having a disability isn't anything really
to do with our disabilities. It's society and their attitudes
towards us.
Speaker 2 (04:56):
Absolutely. I mean, I don't I think, you know, documentaries
like that. I haven't watched it. It's on my list.
Documentaries like that are very important to highlight the ablism,
but also does it then perpetuate the stuff that we
were seeing when we were younger. You know, I don't
think that we should only be fed inspiration pawn, which
(05:17):
is the objectification of disabled people for non disabled people.
But I also feel like there needs to be some
joyous stories. There doesn't always need to be that reinforcement
of negative stereotypes to prove discrimination. And yeah, I do
wonder just how far we've come when we're constantly needing
(05:38):
to trade in our trauma.
Speaker 1 (05:41):
Yeah, there was definitely some positives to the documentary, and
I'm really happy that we're still our voices of being
heard on mainstream media because, as you know, that's quite
important to a lot of us with media representation. You're
known for your amazing fashion set.
Speaker 2 (06:01):
Thank you.
Speaker 1 (06:02):
Why do you wear the items that you do?
Speaker 2 (06:05):
When I was younger, I would say until I was
about thirty, maybe, so what nearly ten years ago. I
never really wanted to stand out more than I already did,
and so I reckoned It would have been probably around
the time I got married, which was in twenty sixteen.
I wore a I wore two white dresses, actually, but
(06:30):
I had this really great jacket, a really great floral
jacket that I wore, so I had three jackets and
two dresses. I wore that jacket over my dress during
the photography and then in the you know, dinner, and
then I got changed into my other dress, which had
sequence on it. And the other thing that happened was
(06:51):
in twenty sixteen, I took leave without pay from my
government job, so I had to I had the government
we had to dress somewhat, you know, more conservatively, and
I just started working more for myself and I could
just wear what I wanted, you know. But I also
(07:11):
like it's the presence of Instagram, especially that I'm passionate
about because it shows brands that I wear their clothes.
So many people will say it's because of me they've
decided to wear something, or buy something, or be more
colorful in their choices or bold in their choices. I'm not,
(07:33):
you know, I'm not pushing capitalism in an evil way
or anything. I'm not demanding people buy stuff. But it
is nice to know that people are, you know, being
more daring with their clothes because they've seen what I'm wearing. Also,
I really like supporting small business. So this top, for example,
is by Let's Got All Faces on It, by a woman,
(07:55):
and she has a brand called Rathema Tat buying from
a smaller label that you're giving to that you know,
one person or a few people that work in the company,
and supporting small business, and that's been really nice. Yeah.
Speaker 1 (08:11):
Absolutely, And for me, fashion is a form of self expression.
So you will never see me or hardly ever see
me in black. It's just not me. And for me.
I think it was a technique or a mechanism for
people to see me before they see in my wheelchair. Absolutely,
And I really do love when people come up and
(08:32):
comment on my outfit or my handbag rather than commenting
on my disability or asking me why I can't walk.
So yeah, it's funny how fashion can be so important
for so many different reasons. What do you love about
having a disability?
Speaker 2 (08:50):
I really like the community. I think that the disability
community is really strong and really supportive mostly and I'm
not saying that everyone has to do this, but I
feel like in having a disability, you're more likely maybe
to talk up about injustices around disability and other human
(09:13):
rights issues. Personally, my disability ichthiosis, it means that my
skin renews itself like twenty five twenty eight times faster
than everyone else's, you know, most other people. So I
look for a young you do. I got invited to
this Score reunion and Score was awful, and I was
(09:35):
in this group chat and it was just like being
back at school. Every time I'd say something, you know,
I'd get just no response. Crickets, And then you know,
someone else will jump in and change the subject. And
I got a photo of me at school so you
know then twenty years ago, and a photo of me
(09:56):
then as well, and put it in a photo collars
show one photo next to the other, and I said, Hey,
I've just come across this old photo from high school
and I haven't aged a bit. I'd love to see
how you've aged.
Speaker 1 (10:11):
Even if people don't view odd disabilities as a positive,
the way we can empower ourselves by viewing it as
a positive, I think is really important. Growing Up Disabled
in Australia beautifully illustrates the diversity of the disability community.
What was the motivation for you collaborating in this book.
Speaker 2 (10:31):
Yes, so Growing Up to Sabled in Australia is an anthology.
It's got forty six writers in it and me my
aim for the book was to bring writers that we
haven't heard of before and writers that we have heard
of before, but really show the diversity of disability. So
in the book there's lots of different types of disability,
(10:52):
but also like a really intersectionality of who's in the books.
So there's people from the trans community, people Aboriginal people,
people who are migrants, people whose English isn't the first language.
Deaf people, intellectually disabled people. It was really important to
me had to have a real big cross section of people,
and we actually have more women and non binary people
(11:14):
than we do men, and we have yet it's a
really diverse range of different voices and also have different
types of ways that they could tell their story. So
there's people who have written poems and people have drawn illustrations.
We've got interviews as well, people who I've interviewed and
who were interviewed. Yeah.
Speaker 1 (11:37):
I was first introduced to you through your first book,
Say Hello, and it's so resonated with me, which I'm
sure is no surprise to you, because like you, I
get asked questions a lot, but it's part of my
job now and I actually don't mind being asked questions.
But what I do relate to is the emotional labor
that we all go through having to answer the same
(11:59):
question over and over again, which is why the podcast
was born, because I thought there's got to be a
more efficient way to do this. Is there a question, though,
that you wish that you are asked more often?
Speaker 2 (12:11):
The title of the books Say Hello, it was called
is called that because it's an invitation for people to
say hello, rather than you know, launching into inappropriate questions.
When I go into a store, for example, or a
restaurant or whatever, I noticed that I'm treated very differently
to the person, the customer in front of me or
behind me. You know, they're often not asked why they
(12:33):
look the way they do. They're often not ignored, They're
often not looked at in horror, and so it was
really an invite for that. So the question I would
like to be asked is more like how are you
or you know, rather than the launching into what's wrong
with you? Or why are you so sun band? Or
(12:54):
why why do you look like that? Quite like it
when people ask if you're okay to talk about this,
like if you don't mind me asking, you know, why
is your face read? Or if you don't mind me
asking my child wants to know this or whatever. I
think that that preface is quite good.
Speaker 1 (13:14):
Employment and education are two areas that I believe define
a person's future. Why do you think, particularly around employment,
there is still such a lack of opportunities and so
many attitudinal barriers towards disabled people.
Speaker 2 (13:30):
I think that people have such a low expectation of
disabled people. But I also think that workplaces aren't set
up for truth flexibility. Perhaps they are better now through
the pandemic where we can work from home, but you
know a lot of jobs ask you to work full
time or to have a driver's license. Some disabled people
can't manage that. Also, there's the lack of accessibility provisions,
(13:55):
like the cost of accessibility provisions. Firstly, I know that
there's job access that they only provide up to six
thousand dollars a year to get supported, and you also
have to work more than thirteen weeks a year. I
see this a lot with artists who might you know,
have a contract with a venue or an art organization
(14:17):
for twelve weeks where they're rehearsing and creating their thing
and then performing, and so they're not eligible for job access.
But then also like when you get into an organization,
I feel like there's either the need to disclose or
the fact that you and I can't help butt disclose,
(14:37):
you know, And so that's really hard as well. Like
I don't think either way it has got it easy.
I feel like sometimes when I see people sort of
defend having the invisible disability is harder than having a
visible one. I just don't think that there should be
a competition or comparison there because we all have it differently,
like you and I can't help but disclose when we and.
Speaker 1 (14:59):
You know, but neither of us know what it's like
for the other persons exactly.
Speaker 2 (15:03):
But I also think that there are elements of a
visible disability that are invisible as well, Like there's lots
of things that you can't see about my condition and
probably similar with yours. So it can be very very
hard to raise accessibility without talking about the condition. Like
we by law, you don't have to disclose your disability
to ask for accessibility, except then when you apply for
(15:23):
job access you know, you might need letters from your
doctor and all of that, and that becomes like medical
model of disability, which is just so there's that. But
I also think that I would love to see more
disabled people, like in leadership positions. You know, where are
these people? Why why isn't there more disabled people in parliament?
Why isn't there more disabled people, you know, leading in
(15:45):
the media, and just so many aspects of you know,
so many sectors that just are lacking with disabled people.
But then there are really great, you know, places I work,
As I said, I work part time at Melbourne Free.
I really really enjoy it there. I feel very valued.
I feel like I can raise things and that they
really absolutely know the heavy lifting that we as marginalized
(16:08):
people do. One of the things that I really like
about where I work is that we have questions, specific
questions on the interview, in the interview process and also
before the interview process about access snakes, and people have
said that they've never been asked this before.
Speaker 1 (16:25):
You know, that's great just by.
Speaker 2 (16:27):
Welcoming people like that. One of the things I didn't
know when I started until I started at Fringe was
I filled out this Fair Work Australia form, but there
was a statement on the form that said if you
are like a mother of a child, or a parent
of a child under two, if you are disabled or
(16:48):
chronically ill. There were all these things that you could
use as a reason to go part time. And I
never knew this because when I was working for the government,
I asked if I could go part time. Back probably
when I was like twenty four or twenty five, I
was really having a struggle with part time a full
time work and not really enjoying the work. But also
my skin just got so sore, and I remember asking
(17:10):
if I could go four days a week or and
they said no. So this statement was on this on
this fair work form, and I'm like, oh my god,
I never knew this. Like seriously, if I had known,
then I probably could have used that. I mean, I
think it's in up to the employer's discretion, but still like,
and it did only come in in two thousand and nine,
(17:31):
I believe, so I'd asked them before that, but still, like,
I just there were so many times that I thought
it would make my life so much easier if I
did not work five days a week, and I didn't
know that I could, you know, ask.
Speaker 1 (17:46):
And that often just illustrates how we have to you
know a lot of the time when we face challenges,
we face them alone. Yeah, because there's nobody else in
the you know, in where we work having a disability
that understand to be able to go to to say, hey,
how do I get down to four days a week?
Speaker 2 (18:06):
Exactly? Exactly. And I think one of the things that
I've been doing is really being mindful when we get
you know, when we get a disabled person start work
or an artist. So I'm really keen on just saying, hey,
how's it going, Do you need any help? Do you
want to talk this through or whatever? Because that's really
important to show someone else that they're not alone, that
they're you know, I mean, they might not strongly identify
(18:29):
as being disabled as I do, but just for them
not to not to feel alone and to feel supported
and that they can ask questions, that's really important to me. Yeah.
Speaker 1 (18:39):
So my last question, what do you hope for someone
with a disability? What do you think would be like
for them in the future if you if you could
wave a wand and it could be you know, in
the next ten years. What do you hope for for
us and other people?
Speaker 2 (18:55):
Well? I do hope we're not in the middle of
a global pandemic.
Speaker 1 (18:59):
We do.
Speaker 2 (19:01):
I think that there's going to be a surge in
people like adults identifying us this disabled because I'm seeing
such a strong identity amongst young people, children, teenagers, young adults,
and I'm just finding that amazing, and not only like
with disability, but a whole range of intersectional identities like
(19:22):
specifically lgbti QA and people, you know, First Nations people,
just seeing so much strength in that, and I feel
like that will happen with disabled people as well. You know,
I do work with White House, which is the Youth
Disability AVOCAUSEY service, and to see these young people just
are in their identity and want to become better advocates
(19:44):
and want to know how to talk about disability and
their own disability and others, it's really great. So I
think that would be great. I really hope that when
we are seeing disability in the media, it's not limited
to like a five minute shadow about someone promoting their book.
Like I'm grateful for doing that on air, but if
(20:05):
that's the only time I'm going to be invited onto TV,
you know, I want to chat about more things. I
want to do more stuff, and I don't only want
to talk about disability either. You know. I got asked
to do a really great panel in at Ulbard Writers
Festival in Bali, and it was about fashion and activism
and it was just so fun doing that. Of course,
(20:25):
we mentioned disability, but I didn't have to talk about
you know, a lot of disability stuff and it was great.
But I also feel like there will be way more
support for people. We're seeing lots of grassroots roots movements.
The Disability Justice Network is amazing. You know, it's been
set up by Van Omalley Herman's who's a young First
(20:47):
Nations woman and just incredible work supporting people from the
grassroots level. So that's really great. And I think that
we're just seeing much more media round, like self made
media that leads to to mainstream media, and I think
that's really really really great. But I think it is
(21:08):
changing slowly. You know, we've got like Kurt Fernlely did
the amazing one plus one series on the ABC, not
only talking about disability, but that incidental stuff of just
being you know, just being present. That's really important. That's
what I want to see.
Speaker 1 (21:23):
Well, thank you so much, Calie. I thoroughly enjoyed this chat.
I hope you did too. You've certainly brightened my day
in lockdown. Thank you so much for being here problem.
Speaker 2 (21:32):
It was really lovely to talk to you.
Speaker 1 (21:37):
Thank you for listening to this week's podcast. I hope
you enjoyed it. If you did, can I encourage you
to leave a rating and review if you listen on
Apple Podcasts, or share the podcast on social media or
with a friend. Until next week, have a good one everyone. Bye,
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