Nothings off Limits - Identity, Community and Disclosure (Ep10)

Nothing’s Off Limits: brings together experts and people with lived experience to discuss the topics we love to avoid but absolutely need to talk about.

In this final episode of series 1, Tess and Polly explore how you take ownership of your disability if you are blind or have low vision. With the help of our guests, we consider disability as a label, as a community, and as an identity.

Nothings off Limits is made with the support of Vision Australia Radio and the NDIS Information Linkages Capacity Building grant. 

See omnystudio.com/listener for privacy information.

Episode Transcript

S1 (00:03):
Nothing's off limits. It's off limits. Bringing together experts and
people with lived experience to discuss the topics we love
to avoid but absolutely need to talk about made with
the support of efficient Australia and the NDIS information linkages
and capacity building grants, including grants.

S2 (00:25):
Hello and welcome to the series where nothing's off limits.
My name is Polly, and together with my co-host Tess,
we're continuing to delve into those subjects which might usually
be considered off limits, discussing them openly and honestly and
through the specific lens of blindness innovation.

S3 (00:42):
And as always, you can download this fabulous podcast via
the Vision Australia website. Just go to Vision Australia dot
org and type. Nothing's off limits into the search engine,
and you'll be directed to our web page where you
can subscribe to make sure you don't miss any episodes
or if you'd like, you can tune in Vision Australia
radio and this is our last episode. We're so sad

(01:06):
and we were so hoping that we could all be
in the studio together for the for the final time.
But unfortunately with lockdown, we're all doing a fabulous recording
session from home, so we do apologise if the quality
of the podcast isn't fantastic. We hope you're really going
to love it because we're really excited about it now.
We probably

S2 (01:24):
absolutely. That's right. And yes, I'm talking to you from
my wardrobe, so I enjoyed the ambient sound effects. And
so in this episode, we're talking about identity, community and disclosure,
and the way that we identify ourselves can impact the
way that we're viewed in our communities. And for people
who are blind or have low vision accepting that they

(01:44):
have a disability and disclosing my disability to others can
be challenging. So we've lined up a number of guests
who have lived experience in this area while thinking about
the way we are viewed by others. It's important to
think about how we view ourselves, and so we asked
you how you would describe yourself using just three words,
and we got some really interesting answers.

S1 (02:06):
Nothing's off limits with Tess and Polly and Polly. How
would you describe yourself? In three words cold,

S4 (02:18):
dark and handsome.

S1 (02:19):
Kind there and fees are fair and fierce. That's a
good

S4 (02:24):
mix. How would I describe myself in three? Would I
think I'm very calm?

S3 (02:29):
I'm resourceful and I'm resilient,

S4 (02:33):
fun, happy, cruisy,

S1 (02:36):
fun, energetic and sport obsessed.

S4 (02:38):
That took me quite a while to think about, but
I think I'd describe myself as loyal,

S1 (02:43):
determined and curious, enthusiastic, passionate about technology.

S5 (02:49):
Me, in three words. Radio presenter, twin Derby and London
are in exile, although I think that comes to about
seven words. Sorry about that.

S1 (03:00):
You're listening to a Vision Australia Radio podcast. Nothing's off
limits with Tess and Polly.

S3 (03:06):
It's time to welcome our first guest for this episode.
Now we often find ourselves subject to labelling from others,
whether it's family, friends, people in the community, so we're
going to ask our guests to introduce themselves. Jason Weiter
is possibly a familiar voice to some of our listeners. Jason,
thank you for joining us. And how would you introduce yourself?

S4 (03:28):
Hi, Tess. Hopefully, you know what? That's probably how I
do generally introduce myself to people with a good hello
and a smile on my face. Look, when I think
about it all depends on the city and the situation
that Tom brought into. I guess in most instances, instances
I should say I do introduce myself. Having a vision
impairment will go up to fashion is usually the first

(03:50):
thing I would say is that I'm not actually here drunk,
although I look at it, I am blind, so I
put a bit of a comical spin on it. And
that usually gets a conversation going. A bit of an icebreaker,
and I'm sure you get addicted to a lot of
blind drunk jokes as well along the way. I was
absolutely looking Typekit and, you know, the only one looking

(04:11):
like a fool, and you don't even have to be
drug to do it. No hangovers in the morning.

S2 (04:16):
Jason, do you identify as having a disability? I mean,
is that how you would describe it?

S4 (04:21):
Yeah, I do. Look, I'm and I'm quite open about it.
I mean, it is the truth. I think, you know,
the definition of a disability is something that either is
a condition that limits one's senses or activities or is
a disadvantage and puts them at a disadvantage now. My
eyesight having very low eyesight. That's definitely a loss of
made sense. And that does limit, you know what I

(04:44):
can do in the community, and it put a disadvantage
to people that are fully sighted. Is it true for
my eyes? Like I would say, I have a disability,
and it's just what it is. I mean, you should
see my applying golf, for instance, to my mates, and
I'd ask them to point me in the right direction
of the whole thing to put me the opposite just
to score. I think that's a disadvantage.

S2 (05:04):
But oh, you just need new friends. I'm not sure.

S4 (05:08):
Maybe that, maybe that. But look, we will all jokes aside.
I don't see a need to hide the fact that
I have a disability. Yeah.

S2 (05:16):
Leading on from that, how important is it for you
that those around you accept that you have a disability?
So it sounds like you have a really good relationship
with your friends and that you're already comfortable about it?
And you know, that's supportive, but also, you know, making
fun sometimes. So is that acceptance a really important part?

S4 (05:32):
I'm going to be honest here, and I don't want
to sound discourteous to others when I say this, you know,
it's not really that important. It would be nice if
everyone could accept the fact that, yes, I have a disability,
this is it, and that Jayson Tatum, who he is.
I'm not going to let it stop me doing the
things I want to do.

S2 (05:47):
So it sounds like actually the really important thing for
you is your own acceptance of having a disability.

S4 (05:52):
Definitely. I'd say that is probably the most important step,
a far more important than what others think and should be.
The world's not going to stop because I have no idea.
So why should I stop doing the things that I
might do? It probably has it. I asked different things,
for instance, disability, bodybuilding and playing blind tennis. Now these
are things I would never have got into in the past,

(06:14):
and these are probably things that I wouldn't even have
a competitive edge on in the past. But now having
low eyesight and accepting that and going out and taking
on these activities has allowed me to become good at something.
I also think that or accepting my disability, it prevents
me from doing reckless things from time to time. So
I don't want to go out and take that car
sun dry up and then blamed on of our vehicles

(06:35):
on the road and maybe pedestrians.

S2 (06:36):
That's a really interesting point. And and it sounds like
you really have taken ownership of your disability and that's
something that you haven't struggled with. Or has that been
a process for you?

S4 (06:46):
The moment I hear myself was deteriorating, what was happening,
it was just like, Well, let's move on. Know, I
think it's something I've grown up with in the past.
I've had a medical conditions, probably since day one, so
I've had to adapt. I guess I learnt at an
early age how to adapt to things and then say, Well, look,
I'm not going to be able to do this. Let's
find something else more realistic and let's proceed. So that

(07:07):
is something that I wanted to do. I have not
had my heart set on it. I would make modifications
to look at ways I could do that and then
allowing people to see that I can still do it.
That's doing well can really accept me for that anyway.
So their experiences like I you, Jason, and he's what
he's doing. We accept him for that. And how do
you

S2 (07:24):
think more broadly, disability kind of sits within the community?
Do you think that there's a stigma around discussing disability,
around having a disability in the wider community?

S4 (07:35):
I think that's sort of one of the things that
sits on a scale. So you'll have those that will say, Look,
disability is what it is. It's fine, it's part of life.
Then you'll have a disability and their disability is that
dirty work and it's something we don't want to discuss.
We want to put it aside, and I think there's
a lot of reasons to come to this. I'm not
a sociologist or anything like that, so I don't know

(07:58):
the ins and outs of it all. Well, what I
see in the community is that more often than not,
it's not the actual person with a disability, and it's
not the person who's not closely associated with disability. It's
the people in the middle, the family members or carers
or support workers who want to sort of say that, well,
don't call them disabled. They say that any part of

(08:20):
everyday community, they require the same as everybody else, and
that can go to wage when it does encourage people
who have a disability can do things. But at the
same time, it can be harmful because if we put
somebody in a situation where you're saying you're quite able
to do exactly what someone who's got a disability can
do and they can put their life in danger. Should
we really be spreading that? So we were saying that

(08:41):
and saying, OK, well, let's just disregard the term disability,
especially if we don't, what do we call? Those are
people that are going to be disadvantaged or they're going
to have trouble, is an actor. And he would say
he coaches people and he has these terms that goes
on to say that you all have a disability and
the Disabilities Act, in my eyes, that sort of something

(09:02):
that stands out to me. I guess it's one of
those things that reaches out to say, Well, we have
a disability that doesn't define me.

S2 (09:10):
I wondered if you had any advice you can share
about that disclosure component. So whether it's disclosing to people
that you just meeting when you're out and about or
whether it's in a more formal environment like, say, starting
a new job or even going on a date? Have
you got any advice about how you can disclose your
disability in a way that, as you said, makes you
feel that you have the agency over it?

S4 (09:31):
Take control over that one? I think it comes down
to a type of disability, just like some of the
some of the most openly obvious. You don't need to
disclose it because it disability itself got disclosed to everybody
around you. Tarantino for missing a limb or you need
to get around a white cane. But then when there
are those that are listen, I suppose it comes down
to the person how confident they are to disclose that

(09:53):
do they need to disclose it? And if he don't
disclose what? One of the reasons why she disclosed, because
in my opinion is the truth is always best. I
think it's always important to disclose it upfront, first and foremost,
because it gets that side of things at the way.
The advice I gave is just to be open, said,
When you introduce it, tell them upfront. First and foremost,
they will probably respect you more for a honest and

(10:16):
you will probably get people that say, Well, okay, is
a person just not capable as someone else at end
of the day that she can affect people as well?

S2 (10:24):
Jason, thank you so much. As if we were on
our first program. So it's so lovely to have you
bookending the series, and I love your advice about, you know,
maybe if you're confident enough going on the front foot
and that's your way of kind of taking ownership of
how you want to represent yourself, that's as ever fascinating
and really helpful.

S4 (10:44):
Always a pleasure. Polly, scientists, thank you so much for
having me on.

S1 (10:49):
You're listening to nothing's off limits, where Tess and Polly did,
you know, Vision Australia has produced a range of stand
up for your rights guides to support you to understand
and exercise your rights. For more information visit Vision Australia
dot org or call one 800 eight four seven four

(11:09):
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S4 (11:22):
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S1 (11:23):
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S4 (11:35):
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S1 (11:36):
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S4 (11:40):
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S1 (11:42):
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S2 (11:47):
We now have a panel of two guests, and both
Courtney McKay and Adelina Holloway will be familiar voices to
some of our listeners. They're both here to talk about
their experiences around identity and disclosure. Thank you both so
much for coming back. How would you two introduce yourselves?
Maybe starting with you, Courtney.

S6 (12:07):
Yeah, OK. So in this context, which is semi professional
and where blindness and low vision is a topic of conversation,
I might say that I'm a psychologist with lived experience
of blindness. I've got 15 years of experience working in
not for profits and local government, and I'm currently managing
Vision Australia's children and Young People team in Queensland.

S2 (12:30):
Adelina, how would you introduce yourself?

S4 (12:32):
Usually, my guide dog Tilly does a bit of an
introduction in that I am vision impaired, so she and
people usually look at her, look at me, look at her,
look at me and kind of think, is she or
isn't she? Because I don't present as vision impaired except
that I have her? I'll get asked a question straight up,
Is she mine? You disclose that point? Yes, she's mine.
And yes, I have low vision and I, but I

(12:55):
still can see. I can see you and I could
see my surrounds, and that usually relaxes the person. And
then I will also say that, you know, I'm a
middle aged mom of a couple of teenagers and fierce
advocate for different, not less. And and, you know, I'm
a kind of fairly confident, outspoken middle aged female who's
become more and more a fierce advocate for people with disability.

(13:19):
So how big a part of your identity is your disability?
You know what, it hadn't been until about three years
ago when I had a kind of or have had
a marriage breakdown, and it caused a lot of stress
that caused me a lot of vision loss and quite
a considerable amount of vision loss. And I really had
to realise then that I couldn't hide from this anymore.

(13:41):
It's around about the same time I got the dog,
so I was a real pretender. I would pretend I
was sighted, not disclose to many at all and still
try and be as excited as I possibly could be.
So I never identified really until about three years ago. Now,
to answer your question, I probably identify all of the time.

S6 (13:59):
Yeah, it's definitely a big part of my life. Being
blind sort of dictates how I do everything, how I move,
how I communicate. It's right at the forefront of how
I operate. It's not necessarily always at the forefront of
my mind, though. I just get on and do things.
But it's definitely the reason why I'm doing those things
in ways that differ from everyone around me.

S4 (14:20):
I think that makes a lot of sense. I think
your disability can really barriers to how much a part
of your identity is, so it's wonderful to get to
slightly different perspectives and how

S2 (14:31):
much is acceptance. And this is something we talked about
with Jason as well. How much is your own acceptance
of your disability? A key factor? Courtney, how about you?

S6 (14:42):
Yeah. So we've talked about grief in one of the
earlier episodes. Bargaining and denial are natural parts or natural
states associated with grief. A little bit like olina said,
you're entitled to your denial. You're entitled to try and
work around the disability as you're adjusting to it. But
resistance definitely burns a lot of energy, and at some

(15:06):
point I have come to the understanding that that energy
is better used on working towards what's good and possible
for me and the people I love. So getting on
good terms with reality is an important daily practice and
I try to engage in.

S2 (15:21):
If you are struggling with that, what are some of
the kinds of things that you can do to become
more accepting of your disability?

S6 (15:27):
Among the most effective things that I've done to become
more accepting is to rub shoulders with other people with
disabilities and people that I admire because of their strong
identification as somebody with a disability, their pride in who
they are and learn from them. That's really accelerated some

(15:49):
of my growth as a person and my ability to
be out in the world representing my community in a
way that feels

S4 (15:57):
comfortable for me and you, Adelina me trying to hide
and cover up and pretend was exhausting and absolutely exhausting,
and I just didn't want to do it anymore. And
I realized when I started to work back with Mission
Australia and work in the NDIS space, and I was
privileged to have a role where I would stand up
in front of people and tell them how supports could

(16:17):
change their lives. And I could do that from a
place of lived experience. So I realised that, no, I
didn't want to stand there and tell people what I
what I could say and what I could do, but
what I couldn't do and how I could do it
with support. So that's when I sort of started why
I put my advocacy have had on and really, you know,
now that I'm almost privileged to be in this position
now because I can change people's lives so by my

(16:39):
lived experience and how I can educate them on how
they can live a full life because often people in
such a. A bad place, and I now use my
voice to be part way, change that for them and
show them that, Hey, you know what? It's possible, it's
possible to still be very empowered, especially as a woman.
I speak a lot with women to be empowered as

(17:01):
a woman, and you can still be a beautiful and
desirable and well dressed and wear those heeled boots in
that dress and we have a guide dog in your head.
You know, that's that's my passion, and that's what I try.
So that has really helped me come into my own
as someone with vision loss. Absolutely.

S2 (17:18):
I'm just really interested about, I guess, the change that's
come in around NDIS, where you have to talk about
the things that you're not able to do in order
for them to be the understanding about what support you need.
How much do you think that's changed the dynamic of
how you think about yourself?

S4 (17:36):
We have to now teach people how to speak the
language of the NDIS, and it's really hard for someone
to sit there and say, for instance, they ridiculously worded
some of these questions like, you know, there's a self-care section,
can you dress yourself? And everyone wants to say, yes,
of course I can dress myself. We have to teach
them how to say no. Yes, I can do it,
but I need assistance. In my case, yes, I can

(17:58):
dress myself, but I need help choosing color. I need
help putting makeup on in that then comes on top
of that. I need an occupational therapist. I need perhaps
someone to show me how to put makeup on. Is
a vision impaired woman. I need better lighting in my bathroom.
I need my magnification, so we need to change the
way people are thinking. So instead of just saying Yes,
I can do this myself, yes, I could do so,
but I need help.

S2 (18:18):
That's fascinating. Courtney, have you found any, I guess, changes
about how you feel about yourself or how you present
yourself going through the NDIS process?

S6 (18:27):
It's pretty common that when you are long term vision
impaired or you've had a disability of any kind for
a long time, you've become really good at work arounds
and everything that you do has been adjusted. You're using
tools using strategies that the average person on the street
couldn't even imagine. But because they've become everyday to you,

(18:49):
you don't necessarily know how to articulate them, to break
them down into tiny little chunks and feed them to
somebody who has no experience of your disability. But that
is what you have to do. You have to be
able to articulate all of those work around. So you
can say, Well, yes, I can do this thing that
I require x y z in order to be able

(19:10):
to do that above and beyond what the average person does.
So for me to lead an ordinary life, I have
all of these adaptations, some of which will require funding
for me to be able to continue Adelina.

S4 (19:21):
You mentioned before the importance of emphasizing being different instead
of saying, Listen, can you tell us a little bit
about why that's important? Yeah, absolutely. So you know, in
a nutshell, it's I try to, you know, empower people
with that thought that you're not less than anyone else
because you have a disability. You just do things differently.

(19:42):
You know, we we can do anything that anyone else
can within our limits of having low vision. But we
just as Courtney said, before we just do it, we
adapt the way we do it. So, you know, we
considered a computer and we do our job, but we
need assistive technology to do that. You know, I can
I can walk to work and commute to my workplace,
but I need my dog beside me to help me

(20:03):
to do that. It's just those little tweaks we have
in life to now enable us to to do things differently.
But we are certainly no less than anyone else

S2 (20:11):
on, Hey, how do you negotiate those boundaries around helping
people to understand a disability? What's not kind of taking
on the responsibility of being everyone's teachable moment? I know
that's something we've kind of touched on before, but that's
a really tough thing to do.

S6 (20:24):
Yeah. And I kind of running a bit of a
cost benefit analysis when I bump into people. So I'm
looking at whether or not they have the capacity to
learn if they're deeply invested in a particular way of
seeing things and that gives them a sense of power.
Then I know that it's probably not going to be
productive to push, you know, I come across a lot

(20:45):
of people that are just not that great at perceiving
and integrating new information generally. Sometimes it's time limits, so
it might only be a passing exchange. I will do
things differently then, as opposed to if we have a
bit more time to explore, and I'm also thinking about
my emotional reserves. So if I'm already depleted, then it

(21:06):
might not be worth trying to educate somebody when I'm
feeling like that versus when I have the energy to
do it. If it's service, I'll try to work with
a person directly the service provider. But if they're combative
and I sense they want to dominate me, then I'll
send the feedback up the line, hopefully to somebody who's
a little bit more reasonable. So it's about balancing my capacity,

(21:27):
their capacity and the impact on my community. Oh, that's

S2 (21:31):
fantastic. A fantastic kind of methodology to use.

S4 (21:35):
Finally, Adelaide, Matt and Courtney, what are some steps that
people could take to make it easier to disclose because
we know that disclosing can be very challenging? Adelina, would
you like to? Yeah, look, I. I think that something
I've learnt in disclosure is using it as an opportunity
to educate as well. So when I disclose or have

(21:56):
done in the past, sure, I've said I've got low vision,
but I've just explained what that what that what that
looks like for me. And I let you know what
I can see. You know, I can see your face,
I can see you standing in front of me. I
can tell that you're wearing a dark color, but I
probably can't see beyond that. You know, just give me
a little bit of a context of what I can see.
And just to give them an understanding. And it makes
it when I do that, it tends to make them

(22:17):
a little bit more comfortable. OK, then I can look
her in the eye and I know she's going to
make eye contact with me to some degree. Or it
also helps if I'm out and about, especially in dimly
lit situations. If I disclose before I go into the
venue to someone who may not doesn't know me very
well or just met. You know, it's just having the

(22:38):
confidence to be able to explain to people what, what,
what you can see and how they can help you
out a bunch of friends. I was in Byron Bay
once and one of my friends pulled me back from
not stepping out front of the car. This before I
had my dog and he screamed. I mean, he was very,
very mad because I've known him since university and he
said to me, Adalind, we just need to know what
you can and can't see, so we know how to
support you. So very nice work. I mean, just so,

(23:00):
you know, stop being so bloody independent and tell us
how otherwise you're going to get killed, you know? So
and that was it. That was by then they kind
of did an intervention with me that night and sort
of said, You know, we we need to know you're
obviously not the woman you were at university. Clearly, you
can't see what you used to be able to see.
So we need to know now so we know how
to support you. And then it just takes the pressure

(23:21):
off us as well. And I never looked at it
like that before. I've had to really think about how
it affects the other person and how to fix those
around me.

S6 (23:30):
Yeah, I think when people acquire vision loss for the
first time or they're new to disability generally, that there's
a real aversion to joining the community and identifying as
somebody who's one of many with a disability. But one
of the benefits, I guess, of being part of our
community is that you get to review a range of approaches,

(23:51):
what other people have done before, and you can choose
what things might look like for you. And that includes
in relation to how you disclose your disability. I would
recommend that people think about different situations because it will vary,
as we've talked about already today. And I also think
people need to be gentle with themselves because you'll be
learning about how to do this well for yourself, for

(24:13):
the rest of your life, and you'll choose and change
your mind over and over and over again. That is
a

S4 (24:18):
wonderful note to end on Adelina. Courtney, thank you so
much for being here and sharing your lived experience with
this is just being such a privilege chatting to you
and wonderful to

S6 (24:28):
be here and congratulations on a great series.

S4 (24:30):
Guys, thank you for having me and have a be
a part of it. I've really enjoyed it and I
hope it helps lots of people out there. I really do.
Well done, guys.

S2 (24:37):
Thank you both so much and Jason too. And as ever,
this is just the start of the conversation about identity,
community and disclosure. And you can visit the Vision Australia
website for some useful resources and information, including an article
with some tips about how you can disclose your disability
to employees.

S4 (24:56):
We've just finished our last episode, Tony. I know I
don't know what to think about this, but we could
not have done it without some very special people. I
have the great honour of first and foremost, thanking our
wonderful collection of guests. We I look, I'm sure that

(25:16):
people would love to listen to Polly and I just
chattering white. We certainly do.

S2 (25:20):
Shortest, I'm less sure. But yes,

S4 (25:24):
for those who don't feel like listening to us, just
chatting away, our guests have brought something just fantastic for podcast.
Thank you to everyone who participated in the box. Pops
just added some fantastic color. Thank you to our listeners,
our wonderful listeners. I mean, what would be the point
of creating a podcast that you to listen to us

(25:45):
and tell us where we're going right or going wrong?
And finally, and I speak on behalf of Polly and myself.
It is most important and so much so very important
to thank our wonderful producer Jace. You were huge that
day because he had just been a wonderful source of
support and expertise. He holds us in line cases in

(26:06):
line when when Polly and I are having too much
fun and

S2 (26:10):
easy, not an easy task.

S4 (26:12):
So it's really not and really more than anything else
we could not have done without him. So thank you, guys.

S1 (26:19):
Thanks, guys. It's the lived experience of our guests that
really pulled it together. I really appreciate everyone's

S4 (26:23):
efforts, completely stressed

S2 (26:26):
and remembered. This episode and early episodes of Nothing's Off
Limits can be downloaded from the Vision Australia website. Just
go to Vision Australia dot org and type. Nothing's off
limits into the search engine and you'll find our web
page and you can catch up with all 10 episodes,
as well as resources that go along with them. And
we'd love to. Your feedback about the series of what

(26:48):
you liked, what you didn't like and what you suggest
should there be a second series? You can reach us
on nothing's off limits at Vision Australia dot org that's
nothing's off limits at Vision Australia. Org No apostrophe upon
apologies there for the grammar experts. But we do hope
to be with you again soon. Until then, thank you

(27:08):
so much for joining us for the show where nothing's
off limits.

S1 (27:17):
That was nothing's off limits. Made with the support of
Vision Australia and the NDIS information linkages and capacity building grant.
Learn more about our radio and podcast offerings by visiting V.J. Radio,
dot org and access all there is to know about
our range of client services via our website. Vision Australia

(27:38):
dot org. We thank everyone who participated in this episode,
but especially you for listening today. We rely on your support,
so please share this podcast with just one person today
and brighten our day or write us on your preferred
podcast platform. Bye for now.