October 18, 2021 • 48 mins
We can all be agents for change, but we need to find our voices first and the courage to speak up.
In this episode, Bronya and Tara speak up about creating communities that empower those living with disability. How can we challenge governments to enact change that creates truly inclusive societies? What does advocacy really mean, and when does it really work? How can we help people find their voice and see the power in their personal storytelling? And how on earth can we get people to care about a cause that doesn’t personally affect them?
Bronya Metherall is General Manager of Global Influence & Social Impact at Cerebral Palsy Alliance. She leads CPA’s global advocacy campaigns, including World CP Day and Window of Opportunity, our campaign to introduce universal early childhood screening for cerebral palsy. Through advocacy, government relations, policy reform, innovation and capacity-building, she’s helping us affect social and economic change to create more inclusive communities. Learn more about Bronya’s work at cpactive.org.au
Tara Moss is an author, former model and ambulatory wheelchair user living with
Complex Regional Pain Syndrome. Tara uses her public profile to help de-stigmatize disability, chronic illness and chronic pain. In 2020, she accepted the honorary role of Pain Champion with Pain Australia.
Check out Tara's books and blog at taramoss.com and follow her two wonderful Instagram accounts: @Taraandwolfie and @taramossauthor
Cerebral Conversations is proudly created by the team at the Cerebral Palsy Alliance to tackle the big issues around disability and find out what happens when great minds think differently. Find out more at cerebralpalsy.org.au/cerebralconversations
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Ben McAlary (00:01):
Hello, and welcome back to Cerebral Conversations. I'm Ben McAlary.
Andy McLean (00:07):
Hello, I'm Andy McLean. We've had some fabulous episodes in
season one already and today's is definitely no exception. By
popular demand, we've invited author and disability advocate Tara Moss
back onto the show now. And this is Tara's second
appearance on Cerebral Conversations. So I think that officially qualifies
(00:27):
her as a friend of the show, right?
Ben McAlary (00:29):
Yeah, absolutely. It sure does. I'm just engraving the trophy
as we speak. Andy, in today's episode, Tara has a
chat with Bronya Metherall, who is General Manager of Global
Influence and Social Impact at Cerebral Palsy Alliance Bronya Leeds
CPA's Global Advocacy Campaigns, which includes World CP Day and
(00:51):
Window of Opportunity, which is the campaign to introduce universal
early childhood screening for cerebral palsy. She was also previously
executive director at the Cerebral Palsy Alliance Research Foundation over
in New York.
Andy McLean (01:08):
Now, this episode really has something for anybody who might
consider themselves to be an advocate, an activist or an
ally for disability rights, or indeed for any area of
diversity and inclusion.
Ben McAlary (01:18):
Andy this is just one of those episodes that will
get you fired up and motivated to press for change.
So let's get into it.
Tara Moss (01:28):
As a person with a physical disability and with a
pain condition like myself, travel can be super tricky and
I'm sure a lot of people listening to this can
relate to that. And what happens is that if your
experience in the airport is a negative one before you
even get going, it might be enough to stop you
(01:49):
from traveling and participating in things completely. Or it might
even mean that you're on really heavy painkillers every time
you're going to go anywhere. And it can be as
simple as, you know, having airport security who are not
trained in understanding the needs of people using mobility aids
(02:10):
or the needs of people with disabilities. And they'll take
your cane off you and you don't have a place
to sit or, you know, they're not recognizing that you
can't keep standing there waiting for your device to come
through security. If security is well trained and they they
see you coming, then they will actually say, Oh, go
into this special lane. Here's someone who understands what's going on.
(02:32):
They're not going to say, pat my leg aggressively, which is
a leg that has a danger and complex regional pain
syndrome in it. If someone does that without asking and
just goes, you know, Pat, Pat, Pat, that's going to
be me in a flare up for a day. And
it only takes a little bit of training and understanding
to know that some people have pain conditions. Some people
(02:54):
have certain access needs. Some people need a chair. Some people,
you know, if they have a mobility aid, it's not
a good idea to take it off them without giving
them a chair or an alternative to use while you're
scanning it. You just, you just don't want to do
that to someone. So if they don't have the training
in place, it can be a really daunting experience.
Bronya Metherall (03:14):
And that's a really interesting topic when you think about
travel that transcends lots of other areas. And when you're talking,
I'm thinking about some of the work that, for example,
our organization participates in. We have a tech accelerator called Remarkable,
and we're accelerating early stage start ups that are going
(03:36):
to aspirationally really change the world through inclusive technology solutions.
But what we talk about is that often it's not
necessarily the advent of new technology. It's actually looking at
current spaces, current planning, current technology that with very simple
(03:58):
changes and modifications, could change the world now.
Tara Moss (04:02):
I don't actually need a really high tech, expensive kind
of tank that takes me out of a like a
townhouse down five sets of stairs just to leave the house.
I just need us to make the world accessible using
the things, the tech, that exists like, let's have a
lift there. Let's have a ramp. You know, we do
(04:22):
have those. It's a matter of implementing the technology that
we have, rather than putting the onus on the user
to access some really extraordinary space age type technology. Just
to leave the house or get into a building, you know,
let's look at our building codes and let's put in
the technology and the knowledge we already possess.
Bronya Metherall (04:45):
And I think some of that experience is so much
more palpable for people at large now right through something
like the pandemic. We think about the level of isolation,
the access barriers that everyday people have been facing over
the last horrendous year and a half. And I think
(05:08):
it brings straight into question the level of innovation of
industriousness that people living with disabilities are having to apply,
as you say, to very simple, everyday tasks that really
shouldn't have to be hacked in that way.
Tara Moss (05:28):
I often have said through the COVID pandemic, you know, hey,
why don't you call up someone who has been living
with chronic illness or disability their whole life? They're going
to have a lot of great ideas, a lot of hacks,
if you will, and a lot of insight and knowledge
regarding how to navigate in a pandemic because they've had
to navigate really difficult problems like this their whole life.
(05:52):
It's now that it's affecting non-disabled people and people who
are who don't have chronic illness, that it's kind of
coming to the fore. But people have been living with
these types of circumstances behind the scenes, if you will,
sometimes behind closed doors for a very, very long time.
And they have a lot to offer us. Like, I'm
(06:13):
learning so much. And gosh, I'd love to see more
businesses and corporations, more city planners, more government sitting down
with people who have lived experience of this because that
is going to tap into a wealth of knowledge and
ideas and opportunities that, you know, I think mainstream thinking
(06:35):
just doesn't doesn't account for.
Bronya Metherall (06:38):
And on that, do you think that through the experience
of COVID 19 and specifically in regards to the challenges
that people living with disabilities face, as you say, often
in the everyday and public domain, do you think that
that has generated more empathy, understanding, insight? Or do you
(07:00):
think in some ways that's short lived?
Tara Moss (07:04):
I am a very positive person. I'm always looking for
the silver lining in situations and there are some silver
linings in this, really. Very difficult time, which has disproportionately
impacted people who have disabilities and chronic illness. That being said,
what's happened is we've seen how easy it is to
(07:27):
make some things accessible in this very difficult time. So
for example, online events, bringing things online, giving access online
to courses to work place interactions to academia. These are
a lot of accommodations people with chronic illness and disability
have been denied in the past, and now we see
(07:50):
because everyone needs, it's suddenly available. And guess what? It's
actually quite easy. I think hanging on to that flexibility
would be the silver lining to me of what we've
learned during this hard time. It's the silver lining that says, actually,
you can be a flexible, say, a parent or someone
who has disability, has mobility issues or has health complications.
(08:16):
And you can do that course. You can get that PHD.
You can keep up with your workplace by doing it
from home or you're, say, the carer for a family member,
you don't have to leave that role so that you
can also have a career. You can do it from
home in a way that works for you, that flexibility.
It's incredibly important to hang on to those gains. So
(08:38):
I really hope that in a kind of post-COVID world,
quote unquote, whatever that means that we hang on to
those specific gains and there would be other ones as well,
but that one really stands out for me.
Bronya Metherall (08:51):
And I think in addition to what you're mentioning, the
sense of community that technology has been able to cultivate,
we're trying something new in that regard in trying to
build out what we are imagining as a grassroots disability
movement and advocacy community here in Australia. And we've been
(09:12):
using mechanisms such as Zoom, which you and I are
using right now. I'm looking straight at you and it
feels like we are enjoying that cup of tea together.
But it's been phenomenal to see people coming together, as
you say, in a very accessible way from all corners of,
in this context, Australia at seven o'clock at night, family members, allies, carers,
(09:38):
people with lived experience using technology to share their stories,
share their lived experience and actually co-design together some of
those changes that that they want to see in the world.
So I think about the power of technology in regards
to advocacy and how exciting that is for us, particularly
(10:00):
when you think about the space it gives to storytelling,
which is obviously for you, your world, you are the
master of storytelling. So how do you think that storytelling,
you know, waves into what we want to see as
a growing disability movement?
Tara Moss (10:19):
It's wonderful for you to say, Bronya. I don't think
I'm a master of storytelling, but I'm always working on it.
For me, actually, Social media and online spaces have been
incredibly important to communicating who I am as a person
to the broader public. It's not what I do for
a living. I mean, I'm a novelist and most often
(10:43):
people encounter my work on a page or maybe listening
to an audiobook or reading an e-book. But the social
media sphere gives me direct access and other people direct
access to me. When they're reading my work, they can
ask me questions. I become a real human to them,
a real, fully formed person. And before social media, I
(11:04):
just didn't have that luxury. And that led to some
pretty strange stereotypes. To go kind of back in time
for a moment, there was this idea that because I
used to model, I couldn't have possibly written my own books,
and that was like,
Bronya Metherall (11:21):
How wrong they were!
Tara Moss (11:22):
Oh, my goodness, you know, that's that's a classic stereotype.
And there's lots of stereotypes about all sorts of people,
and certainly that impacts the disability community, perhaps even most
of all, or certainly very heavily. But for me, it
was this kind of funny idea that I was a model,
so therefore I was an air head and couldn't write my
own books. But once I had social media, I was
(11:43):
able to be visible as a human person, a fully
fledged human, and I could have opinions and ideas, and
people could see what I was like. And I apply
that knowledge of how valuable that is to my advocacy work.
If you can see people, you can hear their words,
you see what their lives are like. You have more empathy.
(12:04):
You have more understanding, and they just can't be that
stereotype anymore. It's not possible to maintain that once you're
faced with the reality of people's lives. So I think
of visibility is a big part of it, and that
changes the cultural story, if you will. And of course,
as a novelist, I'm always looking for ways to include
(12:27):
that element in my storytelling. I want to put in
those missing perspectives and make sure that we have a
more rounded kind of sense of the communities we live in,
that not every person is the kind of say in
crime fiction, the stereotypical white male grizzly kind of Sam
(12:49):
Spade detective. They don't all look like that. They don't
all think that way and acting that way that are
actually a whole variety of really interesting people in the world.
And I want to write them into my fiction because frankly,
it makes for a much better story. And also, it
does help to illuminate this kind of perspectives and viewpoints
that we haven't heard enough from.
Bronya Metherall (13:11):
It's so powerful, isn't it, storytelling?
Tara Moss (13:13):
It is.
Bronya Metherall (13:13):
It really brings us closer together. And there's a quote
that I love by Marshall Gansu, for those that don't
know him, he's quite a prolific writer, he's a lecturer
and a doctorate in organizing and mobilizing around really large
scale social movements. And he says that when we tell
our story, we teach the values that our choices reveal.
(13:34):
As our lived experience, we reveal the kind of person
we are to the extent that we let others identify
with us. So exciting in an advocacy context, because really,
that is how you change the world, isn't it?
Tara Moss (13:48):
So one of the things that I have the unique
privilege of experiences I have , is hearing from a lot of
members of the public. You know, my messages on social
media that I get from people are really extraordinary, and
a lot of people share their stories about, you know,
wanting to find mobility aids or needing them and not
being sure how to get started or where to look.
(14:10):
Or they'll tell me that their doctor told them they
needed a cane and they just couldn't stand the idea
because all they saw were these, you know, aluminum ones
in the pharmacy. And then they saw Wolfie and thought,
Oh no, I can do this my way with my personality.
But one of the other things that I find people
contact me about is their experience of chronic pain. Or
(14:32):
their experience of complex regional pain syndrome, which is not
very widely known and understood outside of this community. And
there's a kind of power in just being visible, whether
it's saying, you know, Hey, my hands up, I have
this diagnosis. This is part of my world, or whether
(14:54):
it's the visibility of using a mobility aid in a
context of that, just knowing that other people are going
through that is sometimes enough to help you keep going.
You know it can bolster you. And that's the sort
of message I get a lot, especially in private messages,
people saying they haven't seen a representation of someone with
(15:14):
CRPS on TV before, or they've never seen someone walk
into a set with a rollator before, for example. And
they're seeing that on their screens, or they're seeing that
on their Instagram and feeling buoyed by that and feeling
kind of a sense of belonging or normalcy that they
don't otherwise get in mainstream culture. So I think that
(15:36):
advocacy can work in a lot of different ways. But
from my perspective, certainly just visibility, and help to destigmatize,
but also to kind of humanize these really normal experiences
people have that maybe aren't talked about enough.
Bronya Metherall (15:52):
You have been very courageous in talking openly and truthfully
about some of the discomforts around the disability discourse, what
it's like to be a woman living with disability in
the modern world. What would you say to people that
perhaps are not quite along that journey yet? There's a
(16:12):
lot of bravery isn't there, to take that step to
talk openly and tell your story?
Tara Moss (16:17):
I think that's a natural instinct for me as a,
I want to say as a storyteller, but just really
me as a human being, I feel motivated to be open.
And if that is helpful to others, that's a bonus.
You know, it's just sort of a part of me.
I wasn't initially very open about my experience into disability,
(16:40):
and I have to own that as well. So when
I was first injured five and a half years ago,
I thought it was something that was just going to pass.
And what happened down the track is that it was
a kind of pivotal moment where I was speaking at
an International Women's Day event. There were a bunch of
wonderful authors there and I was using at that point
(17:03):
a cane. And when we went to take pictures, I
put the cane behind one of the other women there,
and I realized what I was doing. I was erasing
the reality of that disability. Whether it was going to
be temporary or not, and you never know what life
throws at you, but I put it behind someone else
and I realized, Oh my goodness, you, you're hiding that
(17:26):
element of your reality. And I made a decision very
firmly with myself that I was never going to do
that again. And that's when I started Tara and Wolfie,
which is an Instagram account that's dedicated specifically to discourse
and sort of visibility around mobility aid use and disability
and chronic illness. So that's where I kind of document
(17:49):
my journey and experience. And it felt a bit nerve
wracking at first. I'll be honest, and it's not like
there aren't downsides. We have to understand that with a
lot of things when you disclose there are sometimes risks
and we have to respect when people don't want to
(18:09):
say disclose in the workplace that they have chronic illness
or disability because they know perfectly well, it can have
a negative impact sometimes. Now I'm going to say the
best thing you can do is bring 100 percent of
you to work into everything that you do, including your
disability and chronic illness and your access needs. That's my
firm view, but I also very much understand that everybody's
(18:34):
reality is a little bit different, and there are lots
of reasons why that can be much harder, say for
a woman of color than it might be for me.
It might be very different for someone who has a
different disability to mine, right? But for me, actually owning
it and going, OK, I recognize now that my life
has changed. I have. I have a physical disability. I
(18:57):
have high levels of pain. I have complex regional pain syndrome.
This is my diagnosis. This is what's happening. I need
to be I need to give myself the freedom to
look after my needs to do that in a way that's,
you know, I don't feel guilty about that. I don't
feel shame in that. I'm not going to cover it up.
(19:18):
I'm not going to hide my cane behind people and
I'm going to own this. And that has been one
of the most important decisions I've ever personally made, and
it made my life better. It improved my physical health
because I was able to participate in things openly instead
of hiding away, hoping that, you know, my situation would
just magically change. And it also meant that I started
(19:42):
to connect with the disability community, and that is an
incredible resource that I cannot recommend more highly. This is
where you're going to find people who get it, who are,
you know, problem solvers, who are supporters who have specialist knowledge,
even if they're not acknowledged as such.
Bronya Metherall (20:04):
I think a lot of people listening to this right
now would appreciate that honesty and that vulnerability that you've
just shared very common story. We need to hear more
of it, and I thank you for that very natural
process it sounds, and journey, that you've had to navigate
over the last few years. It's really interesting to live
(20:26):
in a place like Australia at the moment. You and
I were talking about this this morning, earlier in our conversation.
You know, you're zooming from Canada right now. I'm across
the pond in Australia. In Australia, we have what's known
as the NDIS. The National Disability Insurance Scheme now, which
we're almost 10 years into, has in many ways disrupted
(20:49):
and overhauled the way in which people living with disabilities
are able to navigate, acquire, choose and self-determined their services
and the supports and access needs just to get through
everyday life, as well as to help enable their goals. Interesting, though,
(21:11):
in many ways we still hear these stories that disability
and the lived experience is not really yet firmly embedded
in the mainstream discourse, in the public discourse. And you've
had experiences of that here and in Canada, which I
think is a really unique perspective. Why do you think
that is?
Tara Moss (21:33):
Look, I think that there is still shame around disability,
I think there's that ableism is a major factor and
that's mostly informed by myth. And, you know, just a
lack of understanding, which has been reinforced by cultural narratives
around disability, that has not been helpful, and not been
(21:55):
written by or voiced by people with actual disability. You know,
I'm a big movie watcher and obviously I read books
voraciously as as well as writing them myself, but I
have very rarely come across depictions of life with disability
that's been written by people with disability. So there's a
(22:16):
lot of disability tropes that are very unhelpful. Certainly, there
are lots of people can speak to many different problems
with disability depictions. I can certainly bring up a few
relating to mobility. I mean, that's a really obvious one.
Words like wheelchair bound. You know this this term, wheelchair bound,
(22:37):
for example, is just is not accurate. Even people who require
a wheelchair throughout every day are not actually bound to
the chair. They have to sleep elsewhere. They have a
life that's also outside their chair. They're not bound to it.
It's a very negative term. And that again, comes completely
(22:59):
from the fact that we have myths and we don't
have voices, authentic voices, that are showing people how frankly,
fabulous and amazing and varied people with disability are, and
their lives. Like we, we come in all shapes and sizes.
Our lives are full and interesting and varied, and it's
(23:21):
just simply not like what you see in the movies.
So the more that we can shift that and tell
our own stories, you know, it's going to have a
real material impact on a lot of people in a
very positive way.
Bronya Metherall (23:34):
And even in regards to the examples you give there around
opportunities to see faces, experiences of real people living with
real disabilities in, for example, Hollywood. Some of those have
attached to them such multi-lateral complex challenges. And I think
(23:56):
about even the pathways that we enable or don't enable
people living with disabilities like cerebral palsy, to pursue a serious,
genuine career in the arts, for example. I think about
training skill, building capacity, building pathways to employment here in Australia.
(24:16):
The figures are shocking for employment and the participation of
young people living with disabilities in our workforce. Something like
93 percent of people living with disability here in Australia
have said in recent years that they find the workforce
really difficult to engage with, and only, less than a
third of young people between 25 and 44 are actually
(24:40):
participating in paid work in Australia. There's lots of systemic
issues we know involved in that access to skills, access
to post school ED, but I think also access to
meaningful opportunities work we know.
Tara Moss (24:57):
I think about where ableism plays into workplaces, academia and schools,
I think, okay, here you have someone who has different
access needs, everybody in the world has access and it's
by the way. But some people with disabilities, their access
needs are going to be slightly different. Right? Literally, all
(25:19):
of us have access needs. You need to be able to,
you know, get in the door or sit at the desk,
you know, be present for the work. You know, whatever
that is, it's going to be different for different people.
I hope, like we're talking about silver linings with COVID.
It's pretty hard to talk about that when things have
been as tough as they are. But I hope that
that silver lining that exists is to do with understanding
(25:40):
that flexibility is actually possible and desirable for a large
portion of the population, whether they're a new parent or
whether there's someone with a chronic illness or with a disability.
Flexibility means they can, you know, do incredible work, get
incredible grades. They can pursue any path. You just can't
(26:01):
demand that everyone fits into the same box. It's just
simply never going to work for a huge number of people.
Bronya Metherall (26:08):
I'm with you on that. I hope that that is
long term thinking and that starts to really challenge our
corporate mindset.
Tara Moss (26:14):
As people with lived experience, we can provide a perspective that,
you know, you just simply can't get otherwise. As a writer,
I'm always thinking about perspectives and I need to do
my research when I'm writing about other communities, and sometimes
I'm going to be hiring people to consult or to
do readings of my work to make sure that I'm
getting things right or to make suggestions because I'm not
(26:38):
arrogant enough to think that I can see through their eyes.
You know, yes, I can fictionalize, but there's going to
be specific things I can't step into, whether it's culturally
or otherwise. Like with the War Widow, for example, my
most recent book, There's an incredible indigenous character, Shyla. She's
a Wiradjuri woman. I couldn't write her character without consulting
(27:02):
with someone who's a Wiraduri woman who can kind of
speak to this. In fact, many different indigenous academics were kind enough
to to speak with me about this role. It's really
important to get that right. And gosh, I wish more
people writing like major Hollywood scripts would take the time
to do that as well, or take the time to
(27:23):
consult with the disability, someone in the disability community that
actually has lived experience, because you kind of just make
your storytelling better and you're going to hopefully avoid the
kinds of tropes and myths that just pop into writers
minds otherwise.
Bronya Metherall (27:39):
Yeah, and it says a lot, I think about how
various movements overlap necessarily as well. They are not mutually
exclusive concepts. The patriarchy, racism, sexism, ableism. They all intersect.
And I think you've reminded us of that beautifully in
that these are the kind of structures that continue to
(28:01):
enable the same power and the same influence to the
same people and groups of people. And so it suggests
to us that Black Lives Matter is also about disability.
The MeToo movement is also about inclusion and disability. And
actually inclusion is the frame that brings all of that
(28:23):
to life.
Tara Moss (28:24):
And it's really relevant to when you think about Black
Lives Matter, because as many incredible black disabled women have
pointed out, something like 50 percent of the black people
killed by police in the U.S. are people with disabilities.
And that is the part of the Black Lives Matter
movement that the disabled community keeps trying to point out.
(28:47):
You know this, this is a major part of the
conversation that's being left out. A lot of the time.
So whether you're talking about me too again, talking about
sexual abuse and assault, disproportionately, women and girls with disabilities
are also abused. So there is there's real reason to
(29:11):
think in an intersectional way because it's an important part
of this conversation. And when we leave disability out of it,
we are not getting the full picture and we're actually
missing really big, important elements of the structures at play
here and what's really going on. We can't afford to
erase disability and that element of the conversation any longer.
Bronya Metherall (29:36):
And that's why I think the narrative around inclusion and
what a truly inclusive world and future can look like
is so exciting, right? It fills me with hope to
think that that benefits so many of the communities that
we've referenced in the conversation. But let's have some fun
(29:56):
with that. You've thought about this a lot. What what
does that look like for you? What is inclusion mean
for you? What is the world that we want our
daughters to grow up in?
Tara Moss (30:09):
I would love my daughter to grow up in a
safer and more fair and equal world where it is
not unusual or noteworthy to see people in the community
with disability. That brings to mind, for example, a recent
little picture she did. She just draws all the time,
(30:29):
and she was drawing a landscape and there was someone
there with some wheels, and I said, Oh, what's that? Oh,
that person's using a rollator. It was a rolling walker
because she's seen me use one, and it was not
a picture about that. It just was part of the
world that she understands. So to me, I'd like to
normalize disability because it is a normal part of human
(30:53):
experience and always has been - to normalize disability, to normalize
multiculturalism or the existence of people from different cultures. The
existence of people with different experiences to bring to the table.
To not see that as extraordinary or other or over there,
but to actually see it as all part of the
(31:14):
rich world that we live in. That's what I would
like to see. I'd like to see voices on equal
footing rather than power to be, you know, this sort
of monolithic group, that's one demographic, I'd like to see
it shared. I'd like to see communities, you know, learning
from each other, communicating with each other. What about you, Bronya?
(31:37):
You would have a really interesting view on this as well.
What does that look like for you? Equal opportunity and
communities that share and are diverse? What does that look like?
Bronya Metherall (31:49):
Well, I have to say your vision is a beautiful one.
I'm smiling as you're talking about your daughter because I
think this next generation of kids, our children in our case,
is quite a special one. What they're hearing and experiencing
and witnessing in this discourse is really challenging stuff and
things that prior generations haven't grappled with to that extent.
(32:13):
So in terms of my utopian future. I think part
of that is really important, that we have a generation
of people who are actually comfortable in talking about the
previously uncomfortable topics and that that is very much part
of the public discourse. I want to see our future
(32:35):
prime minister as a young woman living with cerebral palsy,
for example, and that to be no biggie. I want
to see those tales of heroism exist outside of the Paralympics,
for example. That is the people who are planning our towns,
(32:55):
our urban spaces. That, as you've said, major tech leaders
and giants are modifying technology because they've recognized one of
their biggest customer bases from purely a financial perspective are
people with diverse needs. That's the kind of world that
I want my daughter to live in. And I mean,
I'm an optimist, so I like to think that we're
(33:18):
at least on track getting towards that place, but we
absolutely need the storytelling. We need the lived experience as
part of a dynamic discourse. We also need people to
be brave in stepping up, taking action and allying with
those with lived experience. And I think one of the
(33:39):
key messages I hope that listeners can take away from
this kind of discussion is that we are all an
agent for change. You don't have to be a goodwill
ambassador for the U.N., do you to help create that change?
So I'm kind of keen to talk with you about that.
How can the everyday person with no prior advocacy experience
(34:01):
who might find that word somewhat overwhelming, how can we
debunk and demystify some of that for them? How can
they be involved in creating this type of inclusive future?
Tara Moss (34:14):
Well, an inclusive future future has to involve the whole community.
But if I focus for a moment on the disability
community and I'll take a moment to do that, I
will say that I get a lot of questions from
non-disabled people about how to be an ally. And so
I can I can speak to that, at least from
my perspective. First thing I'd say is, you know, try
(34:36):
to resist schooling people with disabilities on how they should
refer to themselves, becasue that comes up a surprising number
of times.
Bronya Metherall (34:45):
Can you give us an example?
Tara Moss (34:46):
Yes, I'll say, I use alt descriptions and image descriptions
on social media for people who use readers who have
visual impairment or just who prefer to also be able
to read descriptions. So I will often refer to myself
as a disabled woman, because guess what? I am and
(35:07):
I will get people comment going. You know, I love
the picture and what you have to say, but just
one thing you're not a disabled woman. Don't call yourself that,
you know you're more than that. I'll go. Yeah, but
I'm also that, like, I'm also an author and a
mom and all that stuff. And female and everything. But
I'm also, you know, a disabled person. There's no shame
(35:29):
in the word. Or I'll get someone who'll say, Oh, you
don't say disabled, you say person with a disability. It's like, Well,
but I'm the disabled person. I actually get to decide
my language. I'm not going to decide it for you.
People get to decide if they want person first or
identity first. But don't go erasing and kind of trying
to school people with lived experience on how they refer
(35:51):
to themselves, right?
Bronya Metherall (35:52):
So interesting because we've come out of that era, haven't we?
Tara Moss (35:56):
Yes.
Bronya Metherall (35:56):
Disability first, person second. We are now living through seemingly
a new era, person centered.
Tara Moss (36:04):
Yeah. And it's you can be person centred, but also
have a disability as part of your person, your identity.
So if someone wants to say they're a queer person,
you know, we don't want to say, you don't want
to say queer, you want to say LGBTI, you know,
if that's the language that they identify with, follow their lead. Right?
(36:26):
Does that mean you just want to use that word
randomly to anyone? No! But have the respect to listen
and to just kind of go, Oh, there's nothing wrong
with that word. So there's nothing shameful, or embarrassing, or
wrong with the word disabled or disability, and I think
getting around that, and the desire to use euphemisms that
don't refer to disability directly. I think that is often
(36:50):
the first thing I'll say to an ally, like take
the person's lead and know that there's nothing shameful about disability.
And that kind of carries through with a lot of
our internalized and externalized ableism that we have in our communities
because if we want to erase disability, we're also addressing
the need to make the world accessible for people with disability.
(37:13):
We're putting it all kind of to the side as
something we're just not going to talk about, deal with
or see. And we do need to see disability because
we need to see that there are people in our
communities who are different from maybe ourselves and have different
access needs. That would be one of the things I'd say.
And just to listen, to include, to ask a person,
(37:37):
Do you have any access needs that we want to
keep in mind for this event or this discussion? Or,
you know, if you're doing something on Zoom, you can
tell the person, you know, do you have any access
needs for this? Do you want there to be subtitles?
Do you need someone doing sign language? Do you want
(37:58):
the people when they begin, to describe themselves? You know,
so I now often will start my talks and I'll
do it for the people who can't see me right now. I'll say,
Listen to this or say, you know, my name is
Tara Moss. I have long, dark salt and pepper hair.
I'm a disabled woman using a manual wheelchair. I'm Caucasian
(38:21):
and middle aged, and I have a big smile on
my face with red lipstick. And that inclusion of people
who might want the visual or who might not be
able to see a screen when the visual is included,
is just it's a little bit more inclusive. It doesn't
mean we always get it right, but it's at least
(38:42):
opening up to the possibility of including more people. So
I'd say allyship is listening. Just asking the question, you know,
is there something that we can do to make this
more accessible for you? You can ask anyone that, whether
you think or imagine that they're disabled or not, just ask.
Bronya Metherall (39:01):
That's more than just a lift or an elevator, isn't it? Yeah.
Tara Moss (39:04):
Yeah, that's right. It's literally it's going to help people
in their everyday lives. And you know, that person might
not identify as disabled. That person might be, they might
be someone who's a new parent and is really not
getting enough sleep. And if you said, is there something
we can do to make this more accessible, they might
give you a time of day that might work for them.
(39:25):
Or they might ask, Is it okay if I have
my child with me? Or, you know, there's any other
number of things that are going to make events, business opportunities, arts,
the arts more accessible to people. And if we just ask,
we can do it, you know, ask and listen.
Bronya Metherall (39:44):
Key takeaway out of that for me, I am now
going to use salt and pepper hair as a description.
You've made that sound extremely appealing. So for those listeners,
I also have salt and pepper hair. Thank you, Tara.
Tara Moss (39:58):
So our wisdom highlights, I sometimes call them.
Bronya Metherall (40:01):
War scars. That's one of the things that we observe
in the context of of. My work in cerebral palsy is,
because of the nature of cerebral palsy (Cerebral palsy is
a physical disability that results from a direct injury to
(40:21):
the developing brain in the baby), we've come a long
way in our understanding of cerebral palsy, for example. So,
just to give you some background for a very long time,
the understanding of cerebral palsy was that this occurred due
to a accident during birth. For example, the deprivation of
(40:41):
oxygen to bub, lots of systemic issues that have held
back the progress for cerebral palsy in terms of research
and broadening our understanding scarcity of funding. Very low salience.
So very limited awareness in the general population of what
cerebral palsy is and how it how it occurs. We
(41:03):
now know in in just the last decade alone that
actually 80 percent of cerebral palsy happens to bub during pregnancy.
So whilst in the womb. That has really changed the
funding and research landscape, and we've picked up and made
up a lot of time in terms of research advancements recently.
(41:24):
50 million people around the world, probably many more, live
with cerebral palsy. 350 million people are caregivers, allies, carers
support people. This is huge. We are looking at what
kind of challenges we need to combat in regards to
(41:45):
increasing that community understanding and appreciation for cerebral palsy, and
we have a movement called World Cerebral Palsy Day. It's
active in over 100 countries now and how it began,
to your point, Tara was as a campaign that was
called We are here.
Tara Moss (42:02):
Oh, I love it. It's perfect.
Bronya Metherall (42:05):
Isn't that brilliant? And that actually was universally adopted in
many countries around the world because it was a way
for a community of people living with a shared disability,
but with very different experiences, because it's a multifaceted condition
to say, I am here, I matter, I am valued,
(42:27):
I am loved and I am a member of my community.
And in many countries, particularly in low and middle income countries,
we've heard stories from some of our partners in Ghana,
for example, who through that campaign did a whole lot
of community awareness training around what a condition like cerebral
(42:48):
palsy means, how it's caused and how to combat some
of that very deeply embedded stigma in certainly not the
northern part of Ghana, which for many people with cerebral palsy,
is at that time was a death sentence. There were
rife poisonings through communities of people living with cerebral palsy
because of the really gross misunderstanding around what it was.
(43:11):
And that, in fact, was not as a result of
a curse to the mother, that that person mattered and
belonged in the community and should be embraced, and that
campaign work has done extraordinary things. There have since been no cases, that
we're aware of, in that part of Ghana, of any poisonings.
So I only mentioned some of those issues because I
(43:32):
think in every context, it's slightly different, but there is
a long way to go in many corners of the world.
And so movements and advocacy, capacity building, we have to
do this with a nuanced point of view and with
an approach to partnering with and supporting communities who actually
(43:54):
know best. They have a really sound grasp of the
challenges that that they face in their community at a
grassroots level.
Tara Moss (44:02):
,OK, so I'll just mention that obviously I've been an
author for the last 22 years and I've written 13 books,
working on number 14 now. I'll try not to think about
it as we chat, but I've also been very passionately
involved in human rights advocacy for that time, mostly centering
on children and women and girls, and more recently on
(44:25):
people with disability. And of course, all those things cross
over because each of us has, you know, children in
our lives or women in our lives or people with
disabilities in our lives. These are human rights issues that impact all
of us, and impacts some people disproportionately, in a way
where we need to see changes and we need to
(44:46):
advocate very strongly for those changes. So for example, with UNICEF,
I've been to Syrian refugee camps in the Middle East
and met with families and kids who are going through
extraordinarily tough circumstances. I've got goosebumps just recalling some of
those stories. And I guess one of the other really
(45:08):
important things we need to do as human beings is
to recognize that we are not immune to the circumstances
other people find themselves in. Bad things also happen to
good people. Right? So we're not ever, there's no guarantees
in life, and when you look at someone who's a
refugee or you look at someone who's going through a
(45:30):
tough time, you have to recognize that could be you.
So UNICEF and my work with them has taught me
a lot about that. And so has my other human
rights work, and I have a lot more to learn
and a lot further to go to be the best
advocate I can be. But at least I recognize that,
you know, I'm a flawed person trying to do my
(45:51):
best and trying to remain open and to continue to
learn and not be embarrassed by making mistakes.
Bronya Metherall (45:58):
That openness, I think, is very special. And as someone
that's been working in this sector for almost a decade now,
I feel really quite heartened and excited and reassured by
what you've just said because it shows that actually we're
(46:19):
all we all have a capacity for openness, and the
more open we are, the earlier we are, we cultivate
a different set of values around us, whether it be
locally or nationally or in your case, through the global
work that you've been doing. So thank you so much
for that work. And the more that we can engage
you in this cause, so to speak, I think the better.
Tara Moss (46:42):
Oh, thank you, Bronya. It's been so wonderful to chat
with you, and I feel like I want to just
pick your brain and keep going. But I love that
we're on the same page and and that there's a
sense collectively of excitement and possibility that we can improve
things in the future and that we should throw ourselves
(47:03):
into that, you know, into that task of of being
inclusive and listening and doing what we can as individuals
as well as collectively.
Bronya Metherall (47:13):
Thank you so much, Tara. So here's to possibility and
here's to inclusion, and I can't wait to keep crafting
that together with you and the community.
Tara Moss (47:22):
Thank you. I love that phrase of co-creating. I think
we can all be involved in the co-creation of of
a better future and and we need to.
Bronya Metherall (47:33):
Let's do it.
Ben McAlary (47:35):
You've been listening to Cerebral Conversations, a podcast produced by
Cerebral Palsy Alliance.
Andy McLean (47:42):
To learn more, check out the show notes to this episode.
Over at cerebralpalsyorg.au/cerebralconversations
Ben McAlary (47:51):
And if you enjoyed the show, please rate or review
on your favorite podcast platform
Andy McLean (47:57):
and to join the conversation. Follow us on Facebook and Instagram.
Ben McAlary (48:01):
Thanks again for listening
Bronya Metherall (48:03):
the music for this podcast was kindly supplied by Ocean Alley.
Check out the band's music on Bandcamp or visit OceanAlley.com.au
Hello, and welcome back to Cerebral Conversations. I'm Ben McAlary.
Andy McLean (00:07):
Hello, I'm Andy McLean. We've had some fabulous episodes in
season one already and today's is definitely no exception. By
popular demand, we've invited author and disability advocate Tara Moss
back onto the show now. And this is Tara's second
appearance on Cerebral Conversations. So I think that officially qualifies
(00:27):
her as a friend of the show, right?
Ben McAlary (00:29):
Yeah, absolutely. It sure does. I'm just engraving the trophy
as we speak. Andy, in today's episode, Tara has a
chat with Bronya Metherall, who is General Manager of Global
Influence and Social Impact at Cerebral Palsy Alliance Bronya Leeds
CPA's Global Advocacy Campaigns, which includes World CP Day and
(00:51):
Window of Opportunity, which is the campaign to introduce universal
early childhood screening for cerebral palsy. She was also previously
executive director at the Cerebral Palsy Alliance Research Foundation over
in New York.
Andy McLean (01:08):
Now, this episode really has something for anybody who might
consider themselves to be an advocate, an activist or an
ally for disability rights, or indeed for any area of
diversity and inclusion.
Ben McAlary (01:18):
Andy this is just one of those episodes that will
get you fired up and motivated to press for change.
So let's get into it.
Tara Moss (01:28):
As a person with a physical disability and with a
pain condition like myself, travel can be super tricky and
I'm sure a lot of people listening to this can
relate to that. And what happens is that if your
experience in the airport is a negative one before you
even get going, it might be enough to stop you
(01:49):
from traveling and participating in things completely. Or it might
even mean that you're on really heavy painkillers every time
you're going to go anywhere. And it can be as
simple as, you know, having airport security who are not
trained in understanding the needs of people using mobility aids
(02:10):
or the needs of people with disabilities. And they'll take
your cane off you and you don't have a place
to sit or, you know, they're not recognizing that you
can't keep standing there waiting for your device to come
through security. If security is well trained and they they
see you coming, then they will actually say, Oh, go
into this special lane. Here's someone who understands what's going on.
(02:32):
They're not going to say, pat my leg aggressively, which is
a leg that has a danger and complex regional pain
syndrome in it. If someone does that without asking and
just goes, you know, Pat, Pat, Pat, that's going to
be me in a flare up for a day. And
it only takes a little bit of training and understanding
to know that some people have pain conditions. Some people
(02:54):
have certain access needs. Some people need a chair. Some people,
you know, if they have a mobility aid, it's not
a good idea to take it off them without giving
them a chair or an alternative to use while you're
scanning it. You just, you just don't want to do
that to someone. So if they don't have the training
in place, it can be a really daunting experience.
Bronya Metherall (03:14):
And that's a really interesting topic when you think about
travel that transcends lots of other areas. And when you're talking,
I'm thinking about some of the work that, for example,
our organization participates in. We have a tech accelerator called Remarkable,
and we're accelerating early stage start ups that are going
(03:36):
to aspirationally really change the world through inclusive technology solutions.
But what we talk about is that often it's not
necessarily the advent of new technology. It's actually looking at
current spaces, current planning, current technology that with very simple
(03:58):
changes and modifications, could change the world now.
Tara Moss (04:02):
I don't actually need a really high tech, expensive kind
of tank that takes me out of a like a
townhouse down five sets of stairs just to leave the house.
I just need us to make the world accessible using
the things, the tech, that exists like, let's have a
lift there. Let's have a ramp. You know, we do
(04:22):
have those. It's a matter of implementing the technology that
we have, rather than putting the onus on the user
to access some really extraordinary space age type technology. Just
to leave the house or get into a building, you know,
let's look at our building codes and let's put in
the technology and the knowledge we already possess.
Bronya Metherall (04:45):
And I think some of that experience is so much
more palpable for people at large now right through something
like the pandemic. We think about the level of isolation,
the access barriers that everyday people have been facing over
the last horrendous year and a half. And I think
(05:08):
it brings straight into question the level of innovation of
industriousness that people living with disabilities are having to apply,
as you say, to very simple, everyday tasks that really
shouldn't have to be hacked in that way.
Tara Moss (05:28):
I often have said through the COVID pandemic, you know, hey,
why don't you call up someone who has been living
with chronic illness or disability their whole life? They're going
to have a lot of great ideas, a lot of hacks,
if you will, and a lot of insight and knowledge
regarding how to navigate in a pandemic because they've had
to navigate really difficult problems like this their whole life.
(05:52):
It's now that it's affecting non-disabled people and people who
are who don't have chronic illness, that it's kind of
coming to the fore. But people have been living with
these types of circumstances behind the scenes, if you will,
sometimes behind closed doors for a very, very long time.
And they have a lot to offer us. Like, I'm
(06:13):
learning so much. And gosh, I'd love to see more
businesses and corporations, more city planners, more government sitting down
with people who have lived experience of this because that
is going to tap into a wealth of knowledge and
ideas and opportunities that, you know, I think mainstream thinking
(06:35):
just doesn't doesn't account for.
Bronya Metherall (06:38):
And on that, do you think that through the experience
of COVID 19 and specifically in regards to the challenges
that people living with disabilities face, as you say, often
in the everyday and public domain, do you think that
that has generated more empathy, understanding, insight? Or do you
(07:00):
think in some ways that's short lived?
Tara Moss (07:04):
I am a very positive person. I'm always looking for
the silver lining in situations and there are some silver
linings in this, really. Very difficult time, which has disproportionately
impacted people who have disabilities and chronic illness. That being said,
what's happened is we've seen how easy it is to
(07:27):
make some things accessible in this very difficult time. So
for example, online events, bringing things online, giving access online
to courses to work place interactions to academia. These are
a lot of accommodations people with chronic illness and disability
have been denied in the past, and now we see
(07:50):
because everyone needs, it's suddenly available. And guess what? It's
actually quite easy. I think hanging on to that flexibility
would be the silver lining to me of what we've
learned during this hard time. It's the silver lining that says, actually,
you can be a flexible, say, a parent or someone
who has disability, has mobility issues or has health complications.
(08:16):
And you can do that course. You can get that PHD.
You can keep up with your workplace by doing it
from home or you're, say, the carer for a family member,
you don't have to leave that role so that you
can also have a career. You can do it from
home in a way that works for you, that flexibility.
It's incredibly important to hang on to those gains. So
(08:38):
I really hope that in a kind of post-COVID world,
quote unquote, whatever that means that we hang on to
those specific gains and there would be other ones as well,
but that one really stands out for me.
Bronya Metherall (08:51):
And I think in addition to what you're mentioning, the
sense of community that technology has been able to cultivate,
we're trying something new in that regard in trying to
build out what we are imagining as a grassroots disability
movement and advocacy community here in Australia. And we've been
(09:12):
using mechanisms such as Zoom, which you and I are
using right now. I'm looking straight at you and it
feels like we are enjoying that cup of tea together.
But it's been phenomenal to see people coming together, as
you say, in a very accessible way from all corners of,
in this context, Australia at seven o'clock at night, family members, allies, carers,
(09:38):
people with lived experience using technology to share their stories,
share their lived experience and actually co-design together some of
those changes that that they want to see in the world.
So I think about the power of technology in regards
to advocacy and how exciting that is for us, particularly
(10:00):
when you think about the space it gives to storytelling,
which is obviously for you, your world, you are the
master of storytelling. So how do you think that storytelling,
you know, waves into what we want to see as
a growing disability movement?
Tara Moss (10:19):
It's wonderful for you to say, Bronya. I don't think
I'm a master of storytelling, but I'm always working on it.
For me, actually, Social media and online spaces have been
incredibly important to communicating who I am as a person
to the broader public. It's not what I do for
a living. I mean, I'm a novelist and most often
(10:43):
people encounter my work on a page or maybe listening
to an audiobook or reading an e-book. But the social
media sphere gives me direct access and other people direct
access to me. When they're reading my work, they can
ask me questions. I become a real human to them,
a real, fully formed person. And before social media, I
(11:04):
just didn't have that luxury. And that led to some
pretty strange stereotypes. To go kind of back in time
for a moment, there was this idea that because I
used to model, I couldn't have possibly written my own books,
and that was like,
Bronya Metherall (11:21):
How wrong they were!
Tara Moss (11:22):
Oh, my goodness, you know, that's that's a classic stereotype.
And there's lots of stereotypes about all sorts of people,
and certainly that impacts the disability community, perhaps even most
of all, or certainly very heavily. But for me, it
was this kind of funny idea that I was a model,
so therefore I was an air head and couldn't write my
own books. But once I had social media, I was
(11:43):
able to be visible as a human person, a fully
fledged human, and I could have opinions and ideas, and
people could see what I was like. And I apply
that knowledge of how valuable that is to my advocacy work.
If you can see people, you can hear their words,
you see what their lives are like. You have more empathy.
(12:04):
You have more understanding, and they just can't be that
stereotype anymore. It's not possible to maintain that once you're
faced with the reality of people's lives. So I think
of visibility is a big part of it, and that
changes the cultural story, if you will. And of course,
as a novelist, I'm always looking for ways to include
(12:27):
that element in my storytelling. I want to put in
those missing perspectives and make sure that we have a
more rounded kind of sense of the communities we live in,
that not every person is the kind of say in
crime fiction, the stereotypical white male grizzly kind of Sam
(12:49):
Spade detective. They don't all look like that. They don't
all think that way and acting that way that are
actually a whole variety of really interesting people in the world.
And I want to write them into my fiction because frankly,
it makes for a much better story. And also, it
does help to illuminate this kind of perspectives and viewpoints
that we haven't heard enough from.
Bronya Metherall (13:11):
It's so powerful, isn't it, storytelling?
Tara Moss (13:13):
It is.
Bronya Metherall (13:13):
It really brings us closer together. And there's a quote
that I love by Marshall Gansu, for those that don't
know him, he's quite a prolific writer, he's a lecturer
and a doctorate in organizing and mobilizing around really large
scale social movements. And he says that when we tell
our story, we teach the values that our choices reveal.
(13:34):
As our lived experience, we reveal the kind of person
we are to the extent that we let others identify
with us. So exciting in an advocacy context, because really,
that is how you change the world, isn't it?
Tara Moss (13:48):
So one of the things that I have the unique
privilege of experiences I have , is hearing from a lot of
members of the public. You know, my messages on social
media that I get from people are really extraordinary, and
a lot of people share their stories about, you know,
wanting to find mobility aids or needing them and not
being sure how to get started or where to look.
(14:10):
Or they'll tell me that their doctor told them they
needed a cane and they just couldn't stand the idea
because all they saw were these, you know, aluminum ones
in the pharmacy. And then they saw Wolfie and thought,
Oh no, I can do this my way with my personality.
But one of the other things that I find people
contact me about is their experience of chronic pain. Or
(14:32):
their experience of complex regional pain syndrome, which is not
very widely known and understood outside of this community. And
there's a kind of power in just being visible, whether
it's saying, you know, Hey, my hands up, I have
this diagnosis. This is part of my world, or whether
(14:54):
it's the visibility of using a mobility aid in a
context of that, just knowing that other people are going
through that is sometimes enough to help you keep going.
You know it can bolster you. And that's the sort
of message I get a lot, especially in private messages,
people saying they haven't seen a representation of someone with
(15:14):
CRPS on TV before, or they've never seen someone walk
into a set with a rollator before, for example. And
they're seeing that on their screens, or they're seeing that
on their Instagram and feeling buoyed by that and feeling
kind of a sense of belonging or normalcy that they
don't otherwise get in mainstream culture. So I think that
(15:36):
advocacy can work in a lot of different ways. But
from my perspective, certainly just visibility, and help to destigmatize,
but also to kind of humanize these really normal experiences
people have that maybe aren't talked about enough.
Bronya Metherall (15:52):
You have been very courageous in talking openly and truthfully
about some of the discomforts around the disability discourse, what
it's like to be a woman living with disability in
the modern world. What would you say to people that
perhaps are not quite along that journey yet? There's a
(16:12):
lot of bravery isn't there, to take that step to
talk openly and tell your story?
Tara Moss (16:17):
I think that's a natural instinct for me as a,
I want to say as a storyteller, but just really
me as a human being, I feel motivated to be open.
And if that is helpful to others, that's a bonus.
You know, it's just sort of a part of me.
I wasn't initially very open about my experience into disability,
(16:40):
and I have to own that as well. So when
I was first injured five and a half years ago,
I thought it was something that was just going to pass.
And what happened down the track is that it was
a kind of pivotal moment where I was speaking at
an International Women's Day event. There were a bunch of
wonderful authors there and I was using at that point
(17:03):
a cane. And when we went to take pictures, I
put the cane behind one of the other women there,
and I realized what I was doing. I was erasing
the reality of that disability. Whether it was going to
be temporary or not, and you never know what life
throws at you, but I put it behind someone else
and I realized, Oh my goodness, you, you're hiding that
(17:26):
element of your reality. And I made a decision very
firmly with myself that I was never going to do
that again. And that's when I started Tara and Wolfie,
which is an Instagram account that's dedicated specifically to discourse
and sort of visibility around mobility aid use and disability
and chronic illness. So that's where I kind of document
(17:49):
my journey and experience. And it felt a bit nerve
wracking at first. I'll be honest, and it's not like
there aren't downsides. We have to understand that with a
lot of things when you disclose there are sometimes risks
and we have to respect when people don't want to
(18:09):
say disclose in the workplace that they have chronic illness
or disability because they know perfectly well, it can have
a negative impact sometimes. Now I'm going to say the
best thing you can do is bring 100 percent of
you to work into everything that you do, including your
disability and chronic illness and your access needs. That's my
firm view, but I also very much understand that everybody's
(18:34):
reality is a little bit different, and there are lots
of reasons why that can be much harder, say for
a woman of color than it might be for me.
It might be very different for someone who has a
different disability to mine, right? But for me, actually owning
it and going, OK, I recognize now that my life
has changed. I have. I have a physical disability. I
(18:57):
have high levels of pain. I have complex regional pain syndrome.
This is my diagnosis. This is what's happening. I need
to be I need to give myself the freedom to
look after my needs to do that in a way that's,
you know, I don't feel guilty about that. I don't
feel shame in that. I'm not going to cover it up.
(19:18):
I'm not going to hide my cane behind people and
I'm going to own this. And that has been one
of the most important decisions I've ever personally made, and
it made my life better. It improved my physical health
because I was able to participate in things openly instead
of hiding away, hoping that, you know, my situation would
just magically change. And it also meant that I started
(19:42):
to connect with the disability community, and that is an
incredible resource that I cannot recommend more highly. This is
where you're going to find people who get it, who are,
you know, problem solvers, who are supporters who have specialist knowledge,
even if they're not acknowledged as such.
Bronya Metherall (20:04):
I think a lot of people listening to this right
now would appreciate that honesty and that vulnerability that you've
just shared very common story. We need to hear more
of it, and I thank you for that very natural
process it sounds, and journey, that you've had to navigate
over the last few years. It's really interesting to live
(20:26):
in a place like Australia at the moment. You and
I were talking about this this morning, earlier in our conversation.
You know, you're zooming from Canada right now. I'm across
the pond in Australia. In Australia, we have what's known
as the NDIS. The National Disability Insurance Scheme now, which
we're almost 10 years into, has in many ways disrupted
(20:49):
and overhauled the way in which people living with disabilities
are able to navigate, acquire, choose and self-determined their services
and the supports and access needs just to get through
everyday life, as well as to help enable their goals. Interesting, though,
(21:11):
in many ways we still hear these stories that disability
and the lived experience is not really yet firmly embedded
in the mainstream discourse, in the public discourse. And you've
had experiences of that here and in Canada, which I
think is a really unique perspective. Why do you think
that is?
Tara Moss (21:33):
Look, I think that there is still shame around disability,
I think there's that ableism is a major factor and
that's mostly informed by myth. And, you know, just a
lack of understanding, which has been reinforced by cultural narratives
around disability, that has not been helpful, and not been
(21:55):
written by or voiced by people with actual disability. You know,
I'm a big movie watcher and obviously I read books
voraciously as as well as writing them myself, but I
have very rarely come across depictions of life with disability
that's been written by people with disability. So there's a
(22:16):
lot of disability tropes that are very unhelpful. Certainly, there
are lots of people can speak to many different problems
with disability depictions. I can certainly bring up a few
relating to mobility. I mean, that's a really obvious one.
Words like wheelchair bound. You know this this term, wheelchair bound,
(22:37):
for example, is just is not accurate. Even people who require
a wheelchair throughout every day are not actually bound to
the chair. They have to sleep elsewhere. They have a
life that's also outside their chair. They're not bound to it.
It's a very negative term. And that again, comes completely
(22:59):
from the fact that we have myths and we don't
have voices, authentic voices, that are showing people how frankly,
fabulous and amazing and varied people with disability are, and
their lives. Like we, we come in all shapes and sizes.
Our lives are full and interesting and varied, and it's
(23:21):
just simply not like what you see in the movies.
So the more that we can shift that and tell
our own stories, you know, it's going to have a
real material impact on a lot of people in a
very positive way.
Bronya Metherall (23:34):
And even in regards to the examples you give there around
opportunities to see faces, experiences of real people living with
real disabilities in, for example, Hollywood. Some of those have
attached to them such multi-lateral complex challenges. And I think
(23:56):
about even the pathways that we enable or don't enable
people living with disabilities like cerebral palsy, to pursue a serious,
genuine career in the arts, for example. I think about
training skill, building capacity, building pathways to employment here in Australia.
(24:16):
The figures are shocking for employment and the participation of
young people living with disabilities in our workforce. Something like
93 percent of people living with disability here in Australia
have said in recent years that they find the workforce
really difficult to engage with, and only, less than a
third of young people between 25 and 44 are actually
(24:40):
participating in paid work in Australia. There's lots of systemic
issues we know involved in that access to skills, access
to post school ED, but I think also access to
meaningful opportunities work we know.
Tara Moss (24:57):
I think about where ableism plays into workplaces, academia and schools,
I think, okay, here you have someone who has different
access needs, everybody in the world has access and it's
by the way. But some people with disabilities, their access
needs are going to be slightly different. Right? Literally, all
(25:19):
of us have access needs. You need to be able to,
you know, get in the door or sit at the desk,
you know, be present for the work. You know, whatever
that is, it's going to be different for different people.
I hope, like we're talking about silver linings with COVID.
It's pretty hard to talk about that when things have
been as tough as they are. But I hope that
that silver lining that exists is to do with understanding
(25:40):
that flexibility is actually possible and desirable for a large
portion of the population, whether they're a new parent or
whether there's someone with a chronic illness or with a disability.
Flexibility means they can, you know, do incredible work, get
incredible grades. They can pursue any path. You just can't
(26:01):
demand that everyone fits into the same box. It's just
simply never going to work for a huge number of people.
Bronya Metherall (26:08):
I'm with you on that. I hope that that is
long term thinking and that starts to really challenge our
corporate mindset.
Tara Moss (26:14):
As people with lived experience, we can provide a perspective that,
you know, you just simply can't get otherwise. As a writer,
I'm always thinking about perspectives and I need to do
my research when I'm writing about other communities, and sometimes
I'm going to be hiring people to consult or to
do readings of my work to make sure that I'm
getting things right or to make suggestions because I'm not
(26:38):
arrogant enough to think that I can see through their eyes.
You know, yes, I can fictionalize, but there's going to
be specific things I can't step into, whether it's culturally
or otherwise. Like with the War Widow, for example, my
most recent book, There's an incredible indigenous character, Shyla. She's
a Wiradjuri woman. I couldn't write her character without consulting
(27:02):
with someone who's a Wiraduri woman who can kind of
speak to this. In fact, many different indigenous academics were kind enough
to to speak with me about this role. It's really
important to get that right. And gosh, I wish more
people writing like major Hollywood scripts would take the time
to do that as well, or take the time to
(27:23):
consult with the disability, someone in the disability community that
actually has lived experience, because you kind of just make
your storytelling better and you're going to hopefully avoid the
kinds of tropes and myths that just pop into writers
minds otherwise.
Bronya Metherall (27:39):
Yeah, and it says a lot, I think about how
various movements overlap necessarily as well. They are not mutually
exclusive concepts. The patriarchy, racism, sexism, ableism. They all intersect.
And I think you've reminded us of that beautifully in
that these are the kind of structures that continue to
(28:01):
enable the same power and the same influence to the
same people and groups of people. And so it suggests
to us that Black Lives Matter is also about disability.
The MeToo movement is also about inclusion and disability. And
actually inclusion is the frame that brings all of that
(28:23):
to life.
Tara Moss (28:24):
And it's really relevant to when you think about Black
Lives Matter, because as many incredible black disabled women have
pointed out, something like 50 percent of the black people
killed by police in the U.S. are people with disabilities.
And that is the part of the Black Lives Matter
movement that the disabled community keeps trying to point out.
(28:47):
You know this, this is a major part of the
conversation that's being left out. A lot of the time.
So whether you're talking about me too again, talking about
sexual abuse and assault, disproportionately, women and girls with disabilities
are also abused. So there is there's real reason to
(29:11):
think in an intersectional way because it's an important part
of this conversation. And when we leave disability out of it,
we are not getting the full picture and we're actually
missing really big, important elements of the structures at play
here and what's really going on. We can't afford to
erase disability and that element of the conversation any longer.
Bronya Metherall (29:36):
And that's why I think the narrative around inclusion and
what a truly inclusive world and future can look like
is so exciting, right? It fills me with hope to
think that that benefits so many of the communities that
we've referenced in the conversation. But let's have some fun
(29:56):
with that. You've thought about this a lot. What what
does that look like for you? What is inclusion mean
for you? What is the world that we want our
daughters to grow up in?
Tara Moss (30:09):
I would love my daughter to grow up in a
safer and more fair and equal world where it is
not unusual or noteworthy to see people in the community
with disability. That brings to mind, for example, a recent
little picture she did. She just draws all the time,
(30:29):
and she was drawing a landscape and there was someone
there with some wheels, and I said, Oh, what's that? Oh,
that person's using a rollator. It was a rolling walker
because she's seen me use one, and it was not
a picture about that. It just was part of the
world that she understands. So to me, I'd like to
normalize disability because it is a normal part of human
(30:53):
experience and always has been - to normalize disability, to normalize
multiculturalism or the existence of people from different cultures. The
existence of people with different experiences to bring to the table.
To not see that as extraordinary or other or over there,
but to actually see it as all part of the
(31:14):
rich world that we live in. That's what I would
like to see. I'd like to see voices on equal
footing rather than power to be, you know, this sort
of monolithic group, that's one demographic, I'd like to see
it shared. I'd like to see communities, you know, learning
from each other, communicating with each other. What about you, Bronya?
(31:37):
You would have a really interesting view on this as well.
What does that look like for you? Equal opportunity and
communities that share and are diverse? What does that look like?
Bronya Metherall (31:49):
Well, I have to say your vision is a beautiful one.
I'm smiling as you're talking about your daughter because I
think this next generation of kids, our children in our case,
is quite a special one. What they're hearing and experiencing
and witnessing in this discourse is really challenging stuff and
things that prior generations haven't grappled with to that extent.
(32:13):
So in terms of my utopian future. I think part
of that is really important, that we have a generation
of people who are actually comfortable in talking about the
previously uncomfortable topics and that that is very much part
of the public discourse. I want to see our future
(32:35):
prime minister as a young woman living with cerebral palsy,
for example, and that to be no biggie. I want
to see those tales of heroism exist outside of the Paralympics,
for example. That is the people who are planning our towns,
(32:55):
our urban spaces. That, as you've said, major tech leaders
and giants are modifying technology because they've recognized one of
their biggest customer bases from purely a financial perspective are
people with diverse needs. That's the kind of world that
I want my daughter to live in. And I mean,
I'm an optimist, so I like to think that we're
(33:18):
at least on track getting towards that place, but we
absolutely need the storytelling. We need the lived experience as
part of a dynamic discourse. We also need people to
be brave in stepping up, taking action and allying with
those with lived experience. And I think one of the
(33:39):
key messages I hope that listeners can take away from
this kind of discussion is that we are all an
agent for change. You don't have to be a goodwill
ambassador for the U.N., do you to help create that change?
So I'm kind of keen to talk with you about that.
How can the everyday person with no prior advocacy experience
(34:01):
who might find that word somewhat overwhelming, how can we
debunk and demystify some of that for them? How can
they be involved in creating this type of inclusive future?
Tara Moss (34:14):
Well, an inclusive future future has to involve the whole community.
But if I focus for a moment on the disability
community and I'll take a moment to do that, I
will say that I get a lot of questions from
non-disabled people about how to be an ally. And so
I can I can speak to that, at least from
my perspective. First thing I'd say is, you know, try
(34:36):
to resist schooling people with disabilities on how they should
refer to themselves, becasue that comes up a surprising number
of times.
Bronya Metherall (34:45):
Can you give us an example?
Tara Moss (34:46):
Yes, I'll say, I use alt descriptions and image descriptions
on social media for people who use readers who have
visual impairment or just who prefer to also be able
to read descriptions. So I will often refer to myself
as a disabled woman, because guess what? I am and
(35:07):
I will get people comment going. You know, I love
the picture and what you have to say, but just
one thing you're not a disabled woman. Don't call yourself that,
you know you're more than that. I'll go. Yeah, but
I'm also that, like, I'm also an author and a
mom and all that stuff. And female and everything. But
I'm also, you know, a disabled person. There's no shame
(35:29):
in the word. Or I'll get someone who'll say, Oh, you
don't say disabled, you say person with a disability. It's like, Well,
but I'm the disabled person. I actually get to decide
my language. I'm not going to decide it for you.
People get to decide if they want person first or
identity first. But don't go erasing and kind of trying
to school people with lived experience on how they refer
(35:51):
to themselves, right?
Bronya Metherall (35:52):
So interesting because we've come out of that era, haven't we?
Tara Moss (35:56):
Yes.
Bronya Metherall (35:56):
Disability first, person second. We are now living through seemingly
a new era, person centered.
Tara Moss (36:04):
Yeah. And it's you can be person centred, but also
have a disability as part of your person, your identity.
So if someone wants to say they're a queer person,
you know, we don't want to say, you don't want
to say queer, you want to say LGBTI, you know,
if that's the language that they identify with, follow their lead. Right?
(36:26):
Does that mean you just want to use that word
randomly to anyone? No! But have the respect to listen
and to just kind of go, Oh, there's nothing wrong
with that word. So there's nothing shameful, or embarrassing, or
wrong with the word disabled or disability, and I think
getting around that, and the desire to use euphemisms that
don't refer to disability directly. I think that is often
(36:50):
the first thing I'll say to an ally, like take
the person's lead and know that there's nothing shameful about disability.
And that kind of carries through with a lot of
our internalized and externalized ableism that we have in our communities
because if we want to erase disability, we're also addressing
the need to make the world accessible for people with disability.
(37:13):
We're putting it all kind of to the side as
something we're just not going to talk about, deal with
or see. And we do need to see disability because
we need to see that there are people in our
communities who are different from maybe ourselves and have different
access needs. That would be one of the things I'd say.
And just to listen, to include, to ask a person,
(37:37):
Do you have any access needs that we want to
keep in mind for this event or this discussion? Or,
you know, if you're doing something on Zoom, you can
tell the person, you know, do you have any access
needs for this? Do you want there to be subtitles?
Do you need someone doing sign language? Do you want
(37:58):
the people when they begin, to describe themselves? You know,
so I now often will start my talks and I'll
do it for the people who can't see me right now. I'll say,
Listen to this or say, you know, my name is
Tara Moss. I have long, dark salt and pepper hair.
I'm a disabled woman using a manual wheelchair. I'm Caucasian
(38:21):
and middle aged, and I have a big smile on
my face with red lipstick. And that inclusion of people
who might want the visual or who might not be
able to see a screen when the visual is included,
is just it's a little bit more inclusive. It doesn't
mean we always get it right, but it's at least
(38:42):
opening up to the possibility of including more people. So
I'd say allyship is listening. Just asking the question, you know,
is there something that we can do to make this
more accessible for you? You can ask anyone that, whether
you think or imagine that they're disabled or not, just ask.
Bronya Metherall (39:01):
That's more than just a lift or an elevator, isn't it? Yeah.
Tara Moss (39:04):
Yeah, that's right. It's literally it's going to help people
in their everyday lives. And you know, that person might
not identify as disabled. That person might be, they might
be someone who's a new parent and is really not
getting enough sleep. And if you said, is there something
we can do to make this more accessible, they might
give you a time of day that might work for them.
(39:25):
Or they might ask, Is it okay if I have
my child with me? Or, you know, there's any other
number of things that are going to make events, business opportunities, arts,
the arts more accessible to people. And if we just ask,
we can do it, you know, ask and listen.
Bronya Metherall (39:44):
Key takeaway out of that for me, I am now
going to use salt and pepper hair as a description.
You've made that sound extremely appealing. So for those listeners,
I also have salt and pepper hair. Thank you, Tara.
Tara Moss (39:58):
So our wisdom highlights, I sometimes call them.
Bronya Metherall (40:01):
War scars. That's one of the things that we observe
in the context of of. My work in cerebral palsy is,
because of the nature of cerebral palsy (Cerebral palsy is
a physical disability that results from a direct injury to
(40:21):
the developing brain in the baby), we've come a long
way in our understanding of cerebral palsy, for example. So,
just to give you some background for a very long time,
the understanding of cerebral palsy was that this occurred due
to a accident during birth. For example, the deprivation of
(40:41):
oxygen to bub, lots of systemic issues that have held
back the progress for cerebral palsy in terms of research
and broadening our understanding scarcity of funding. Very low salience.
So very limited awareness in the general population of what
cerebral palsy is and how it how it occurs. We
(41:03):
now know in in just the last decade alone that
actually 80 percent of cerebral palsy happens to bub during pregnancy.
So whilst in the womb. That has really changed the
funding and research landscape, and we've picked up and made
up a lot of time in terms of research advancements recently.
(41:24):
50 million people around the world, probably many more, live
with cerebral palsy. 350 million people are caregivers, allies, carers
support people. This is huge. We are looking at what
kind of challenges we need to combat in regards to
(41:45):
increasing that community understanding and appreciation for cerebral palsy, and
we have a movement called World Cerebral Palsy Day. It's
active in over 100 countries now and how it began,
to your point, Tara was as a campaign that was
called We are here.
Tara Moss (42:02):
Oh, I love it. It's perfect.
Bronya Metherall (42:05):
Isn't that brilliant? And that actually was universally adopted in
many countries around the world because it was a way
for a community of people living with a shared disability,
but with very different experiences, because it's a multifaceted condition
to say, I am here, I matter, I am valued,
(42:27):
I am loved and I am a member of my community.
And in many countries, particularly in low and middle income countries,
we've heard stories from some of our partners in Ghana,
for example, who through that campaign did a whole lot
of community awareness training around what a condition like cerebral
(42:48):
palsy means, how it's caused and how to combat some
of that very deeply embedded stigma in certainly not the
northern part of Ghana, which for many people with cerebral palsy,
is at that time was a death sentence. There were
rife poisonings through communities of people living with cerebral palsy
because of the really gross misunderstanding around what it was.
(43:11):
And that, in fact, was not as a result of
a curse to the mother, that that person mattered and
belonged in the community and should be embraced, and that
campaign work has done extraordinary things. There have since been no cases, that
we're aware of, in that part of Ghana, of any poisonings.
So I only mentioned some of those issues because I
(43:32):
think in every context, it's slightly different, but there is
a long way to go in many corners of the world.
And so movements and advocacy, capacity building, we have to
do this with a nuanced point of view and with
an approach to partnering with and supporting communities who actually
(43:54):
know best. They have a really sound grasp of the
challenges that that they face in their community at a
grassroots level.
Tara Moss (44:02):
,OK, so I'll just mention that obviously I've been an
author for the last 22 years and I've written 13 books,
working on number 14 now. I'll try not to think about
it as we chat, but I've also been very passionately
involved in human rights advocacy for that time, mostly centering
on children and women and girls, and more recently on
(44:25):
people with disability. And of course, all those things cross
over because each of us has, you know, children in
our lives or women in our lives or people with
disabilities in our lives. These are human rights issues that impact all
of us, and impacts some people disproportionately, in a way
where we need to see changes and we need to
(44:46):
advocate very strongly for those changes. So for example, with UNICEF,
I've been to Syrian refugee camps in the Middle East
and met with families and kids who are going through
extraordinarily tough circumstances. I've got goosebumps just recalling some of
those stories. And I guess one of the other really
(45:08):
important things we need to do as human beings is
to recognize that we are not immune to the circumstances
other people find themselves in. Bad things also happen to
good people. Right? So we're not ever, there's no guarantees
in life, and when you look at someone who's a
refugee or you look at someone who's going through a
(45:30):
tough time, you have to recognize that could be you.
So UNICEF and my work with them has taught me
a lot about that. And so has my other human
rights work, and I have a lot more to learn
and a lot further to go to be the best
advocate I can be. But at least I recognize that,
you know, I'm a flawed person trying to do my
(45:51):
best and trying to remain open and to continue to
learn and not be embarrassed by making mistakes.
Bronya Metherall (45:58):
That openness, I think, is very special. And as someone
that's been working in this sector for almost a decade now,
I feel really quite heartened and excited and reassured by
what you've just said because it shows that actually we're
(46:19):
all we all have a capacity for openness, and the
more open we are, the earlier we are, we cultivate
a different set of values around us, whether it be
locally or nationally or in your case, through the global
work that you've been doing. So thank you so much
for that work. And the more that we can engage
you in this cause, so to speak, I think the better.
Tara Moss (46:42):
Oh, thank you, Bronya. It's been so wonderful to chat
with you, and I feel like I want to just
pick your brain and keep going. But I love that
we're on the same page and and that there's a
sense collectively of excitement and possibility that we can improve
things in the future and that we should throw ourselves
(47:03):
into that, you know, into that task of of being
inclusive and listening and doing what we can as individuals
as well as collectively.
Bronya Metherall (47:13):
Thank you so much, Tara. So here's to possibility and
here's to inclusion, and I can't wait to keep crafting
that together with you and the community.
Tara Moss (47:22):
Thank you. I love that phrase of co-creating. I think
we can all be involved in the co-creation of of
a better future and and we need to.
Bronya Metherall (47:33):
Let's do it.
Ben McAlary (47:35):
You've been listening to Cerebral Conversations, a podcast produced by
Cerebral Palsy Alliance.
Andy McLean (47:42):
To learn more, check out the show notes to this episode.
Over at cerebralpalsyorg.au/cerebralconversations
Ben McAlary (47:51):
And if you enjoyed the show, please rate or review
on your favorite podcast platform
Andy McLean (47:57):
and to join the conversation. Follow us on Facebook and Instagram.
Ben McAlary (48:01):
Thanks again for listening
Bronya Metherall (48:03):
the music for this podcast was kindly supplied by Ocean Alley.
Check out the band's music on Bandcamp or visit OceanAlley.com.au
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