The Burden of Proof... with Carly Findlay

Speaker 1 00:00

Access Granted is a production for Powered Media.

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Emma

Welcome to Access Granted, a podcast for anyone seeking inclusion when it comes to living with disability. I'm Emma Myers, and in this edition, I hear from someone tired of being constantly asked to prove herself.

Carly

I have been applying for the disability support pension and also I started applying for the NDIS and it's just the amount of information that you have to provide for both of those is enormous but also the disbelief that you get about the severity of this condition.

Emma 00:45

Carly Finlay is an Australian writer, speaker and online influencer. She describes herself as an appearance activist. And as we heard, she was frustrated with continued questioning of her condition, ichthyosis. And I am delighted she's my first guest.

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Access Granted is where the personal and the political collide. It's curious conversations between people living with disability, hearing about advocacy, the push for change, and discussing ideas for a more accessible world.

Speaker 1 01:32

You're listening to Access Granted with Emma Myers.

Emma 01:36

I don't want it to be too serious... so Carly, I want to start by asking you for an amusing incident from your childhood.

Carly 01:47

I remember this, I fell in the toilet, I was very small, and I fell in the toilet - bum first, thankfully not head first - and my mum couldn't stop laughing at me, and she had me out of the toilet after she stopped laughing, but she does have a record of laughing at my falls, starting from when I fell in the toilet.

Emma 02:09

Can you begin by telling me, what's it like growing up?

Carly

I had a really loving family, or I have a really loving family still, my mum and dad, I am an only child, and I really enjoyed the creativity that they encouraged in me - they encouraged a lot of storytelling and crafts, and I was really, I really liked to make things when I was younger, I'm really into crafts - not so much now, I'm not very good at it, I only like to do stuff, I don't sound silly, but I only like to do stuff I'm good at, or else I don't get the gratification as an adult, but as a child I was very good at crafts and making things.

But I felt that in a very small town where I grew up, I grew up about half an hour out of Albury... it was really hard because there was a distinct lack of diversity in the 80s and 90s when I grew up - very white, and there was not a lot of disabled people around, and I didn't identify as disabled because I didn’t see myself as disabled, because I saw disability as a very, you know, specific thing, and so I didn’t have that community, but I also would get teased a lot for being different. I have a skin condition called ichthyosis, and I remember from a very early age that I would get excluded and called names and picked on for that, so I felt that really hard.

And the other big thing that happened in my childhood was I was in hospital a lot, particularly sort of from primary school on to high school, and I would get a lot of skin infections and have to go into hospital to get them treated. And I would stay in the Royal Children's Hospital, feeling in hospital with other children who also had different types of illnesses, I felt more understood there than I did at my school, I felt very included, I made a lot of friends there... so yes, that was I guess what my childhood was like - so happy at home but not as happy in a school setting, and very comfortable in hospital.

Emma

So... for our listeners who don't know what ichthyosis is, can you describe it for us?

Carly 04:31

Sure, so it's a very rare, very severe skin condition... there are about 25 types of ichthyosis under the ichthyosis umbrella, ranging from mild and not really obvious to severe and quite obvious, and I'm on the severe and quite obvious or very obvious end. I have Netherton Syndrome, the type of ichthyosis I have is Netherton Syndrome, and it means that my skin is very red and inflamed, it means that I'm itchy, I'm susceptible to infections, and my hair doesn't grow very quickly... it breaks off at the roots.

And there's a lot of other things that ichthyosis affects, things like body temperature regulation, ability to grow, lots of children have a failure to thrive when they're young, when they're babies, when they're young, and so it's... yeah, and when people are in developing countries, it can be very hard for people with babies particularly, with severe ichthyosis to stay well or even stay alive because they can be such fragile babies, so yeah.

Emma 1 05:45

And growing up as a child of immigrants in Australia, how did you identify?

Carly 05:55

That's a great question. So my mummy is South African. She describes herself as colored South African. She lived in South Africa in the apartheid era, which is the racial segregation of blacks and whites. And she met my dad in South Africa. He is a white Englishman. And he went to South Africa to work and they met and they had to court illegally. They went to Australia because they couldn't get married in South Africa. So they arrived here in January, I think, of 1981. And I was born later that year in December. And so I identified as very Australian, I think.

I remember when I was about four or five, and I think the national anthem, the Australian national anthem, I think, had been out for a few years. And I remember my mom saying, Oh, you'll have to get one of your Australian aunties to teach you that when you go to school. And I grew up very much listening to Australian music and having a barbecue in the backyard, all of that. And it wasn't until I was in my... maybe early thirties, that... people just didn't see me as white. So when I was a kid, people would say to me, Oh, if you weren't red, what colour would your skin be? And I would say, Oh, it’d be white, it'd be white, you know, deferring to the default colour that they preferred, I guess.

And I didn't know any Africans when I grew up. So I didn't really have that knowledge of what it meant to be a person of colour. But that wasn't until other people kind of confirmed that and I started to meet more African people and other people of colour that I explored my racial identity. Also I felt like my disabled identity was very... front of mind because the skin condition took up so much of my thinking spaces so much and affected so much of my life. So yes, that is how I identified then.

And now, you know, I say that I'm a woman of colour, so... because I am. And I recently went to South Africa to meet my mom's family and learn about racial segregation and history. And it was amazing. I got a writing grant to go, and I interviewed a whole heap of people from historians to people who were helping my mum and dad caught when they were in South Africa, helping them do that secretly. And I met a lot of activists there who have been doing feminism and racism or anti-racism activism for many years. You know, they're my parents' age, so in their 70s. And it was amazing. And then I met lots of disabled artists as well. So it was life-changing, going to South Africa and having such an immersion in my family and in the culture.

Emma

I remember you posting about that. I thought, Oh, wow, that's so cool. Because you met up with another person with ichthyosis, didn't you?

Carly 09:05

Yes. Yeah, I did. I met up with a young boy. He's 11. And he's, I think, the only known person with that type of ichthyosis, he has harlequin ichthyosis. We look very similar. He, yeah, we met up and we went to his house and had a barbecue. They have like an indoor barbecue there. And it was so good. And I think that he didn't realise the significance of it. He was a bit like, meh, I'm just going to stay in my room and play video games with my friend. And then a few days later, they invited me to speak at his school. And he seems to be a very quiet, shy boy. And he got to introduce me on the stage. And he was so excited to do that. And it was just lovely. Yeah, that was really fun.

Emma 09:50

When did you become acutely aware of your condition? I know you said that school was hard in general. Can you provide a few examples of that?

Carly

Yeah, I definitely became acutely aware when people were teasing me and excluding me. It was probably when I went to, had to go to a daycare centre that I didn't usually go to. Mum must have had an appointment or something. And she took me to a daycare centre. And I remember the kids like, really circling me on their bikes. And I did experience some physical kind of violence from children at that age, like they were pinching me and taunting me. I remember that, I would have been about three, about same age as I fell into the toilet, falling into the toilet was a better experience, I guess.

And then I realised I kind of always, my parents have been very good in telling me about my condition. I know some disabled... kids are left without that information because their parents sometimes think that, Oh they're going to let them decide or it's not you know, disability doesn't define them, but mine were very good in telling me about that... so I was very assertive about my own needs and my own treatment from a very young age and very up with the language and aware how to explain it to people - like I was born like this, or... so yeah probably when I was you know four or five I started to articulate it a bit more.

Emma 11:15

What was the defining moment that kind of... made you determined to raise awareness of this condition... and I guess, why do you call yourself an appearance activist?

Carly 11:28

It was when I was an adult and I saw the media depiction of this condition that, you know, lots of people were described as dehumanising objects when reported in the media. So things like Snakeskin Woman and Mermaid Boy and, you know, people would speak about people with ichthyosis rather than the person with ichthyosis speaking for themselves. So it was when I started writing more and meeting more disabled people, like I was blogging a lot and I started to write more about life with ichthyosis and I met more people with ichthyosis...

So it would have been in my 20s and 30s that I started to identify... and I did an interview on ABC Radio, I don't know, it would have been about 2011 or ‘12 maybe. It was with Ginger Gorman who, you know, is a specialist in [?trail hunting], and she coined the term appearance activist because I would write and speak a lot about what it's like to look different, what it's like to have a facial difference, so yeah.

Emma 12:27

And what's it like living in the very sun positive culture? Does the weather and the atmosphere affect you?

Carly

So there's a lot of assumptions that I'm sunburnt, so I get more questions about whether I'm sunburnt than anything... and especially given that Australia was in the 80s and 90s very much about sunbaking and having fun outside. So there was that, and I think my dad especially really modelled some sun safe practices really early on, which I'm really grateful for. I don't go out much in the sun without being covered because it's uncomfortable for me but also I don't want to mislead people to think that I'm getting sunburnt.

In terms of how it affects me, yes it absolutely affects me, it's very much like... my body doesn't regulate its temperature, so that's really hard to be existing in summer, because I get so hot. When I had my booklaunch in 2019... I planned it from about October and it was in January, so I didn't know what the temperature would be like then. I suspected it would be hot. I booked a venue, and it was a really accessible venue for wheelchairs and for people who were deaf but... it wasn't really accessible for heat regulation, but we obviously couldn't help that, because we didn’t know it was going to be 45 degrees on the day of my book launch when I booked it.

And beforehand I was lying on the floor in the bathroom trying to cool down because my body was so hot, my heart was beating so fast on the way there in the taxi and it was just so hot and I remember... I took a freezer pack with me to sit on or to put it on my chair, and my mum was in the front row and so was my agent Danielle, and I was texting Danielle while I was on stage to ask her for the cold pack because they'd forgotten in the freezer. And also funny, my mum was like telling me off the texting from the stage at my own event to try and meet my access needs.

Anyway, so yeah I find that really hard... but I also have to when I go overseas or when I you know go on holidays here, I have to plan how it's going to be, how hot it's going to be and I don't want to go the hottest time of the year and I did some work at [?Orbit] Writers’ Festival a few years ago, and that was incredibly hot and incredibly hard for me to be there... but then I've done some work in Cairns which is probably the same kind of humidity and temperature but I went to the time when it was okay it's tricky because I really don't cool down and warm up as other people do or most people do.

Emma 15:04

Is that why you picked... Melbourne?

Carly

Ahhh...yes-ish, because when I used to come to Melbourne in, when I was a kid, I actually thought that it was a lot colder than it is as I live here, like you just acclimatise I guess... but, you know, we know that it's probably only going to have about six days over 40 a year in here because you know one day it's... sunny and the next day it's blowing a gale... but I did pick Melbourne because of its diversity and because the opportunity is more than the weather. Yeah, I mean I wouldn't go and live in Queensland for example.

Emma

No no no, neither would I - because I spend the majority of my time sitting on foam, it's horrendous in summer - so I actually loved moving to Canberra...

Carly 15:52

Yeah, bit of cold, yeah...

Emma

Yeah...

Carly

And I know a lot of disabled people that do move to the warmer climates, and I know lots of people with ichthyosis really like the humidity - I don't, but people that I know will move to a more humid climate... or, I actually know some people who have moved to places that where the water is better... because you know the hardness and softness of water can affect people - and so I know when I travel, if I go to somewhere where the water's really hard, it's harder for me, or where the water, where you can't drink the water, so barley... it gets really hard for me, so yeah, so there is all that to back to it, and I think my parents they spent a lot of time wanting to move to Tasmania - we often would talk about moving to Tasmania because of the cold weather, but... yes it was very, it's hard.

Emma 16:40

I can also appreciate you kind of trying to justify... to your mum that you were only trying to make yourself comfortable...

Carly

Yeah...

Emma

‘Cause my mother often would kind of say pick the appropriate time to assess the access needs otherwise it's just gonna be too damn hard.

Carly

Yeah, yeah.

Speaker 1 (over music)

You're listening to Access Granted with Emma Myers.

Emma 17:12

What's it like dealing with the onslaught of trolls and dermatological advice unsolicited, obviously, online?

Carly

I reckon I get more dermatological advice unsorted in person, to be honest. I get a lot of people telling me that their relatives had laser surgery or laser treatment on their face. I was buying a plant the other day and the woman helping me, the saleswoman helping me was really helpful. And then she rushed up to me and she's like, Oh my gosh, did you have laser on your face? And I said, no. I said, it's not in your job description to need to know what's happened to my face. And then she was like, I was only asking. Oh my God. Anyway, so that can be tricky.

Emma

What's it like to get trolling online?

Carly 17:59

I don't get trolling so much now on my own pages because I have really strict filters. So I have filters that don't allow people to say slow words or don't allow people to post if they're not following me or haven't been following me for a while. And so that's been better. But in terms of like getting just random people, either telling me how ugly I am or telling me to kill myself, I have had that in the past and the police don't take it seriously because they don't think online is real life.

And I talked about that at the Disability Royal Commission in 2022. And I talked about how abuse in public spaces is just so exhausting. And it is so hard for all disabled people. So yeah, that's hard. But also the trolling that I get is often like tall poppy syndrome where they're annoyed at my success or they pick on something really in my outfits or how much I spend on my clothes or something. And that often comes from within the disability community.

Emma 19:23

Can you talk a bit about, you know, I've read pieces by talking about the burden of proof and the admin that comes along with disability. How much of that have you come across?

Carly

So much. I mean, when I travel, I have to provide doctors letters to get extra leg room or extra luggage to take my ointments. And then, you know, I've encountered like I did recently on my recent trip, the airline didn't make a note of that. So we got to the check -in and they said, Sorry, we don't have a record of you requesting and paying for extra leg room. Even though I did the work prior, I got the letters, I called the airlines. And so that's a hassle. And right now, I think it's incredibly difficult for me with the burden of proof because... I got diagnosed with cancer in June and so three months ago. And I have been applying for the disability support pension. And also, I started applying for the NDIS. And it's just the amount of information that you have to provide for both of those is enormous.

But also the disbelief that you get about the severity of this condition. And I hate that I've had to hand over so many things. to someone who I don't know is assessing them. I've had to show them all their bank account details and what day I flew out of the country and what day I came back in and my marriage details, all of that. And yeah, I absolutely hate the burden of proof, but also for so many disabled people and families of disabled people, then we have to prove that we've still got a condition that is proven to be lifelong.

And so many people will say, oh, they keep on having to prove that their child has Down syndrome year after year to get the NDIS. And I keep on having to prove that I have this condition. And it was particularly weird in COVID lockdowns in Melbourne, where we had so many lockdowns more than the rest of the country. And I had a cleaner for medical reasons at the time. And I kept on every time we'd have a lockdown, I'd have to get a new letter from the doctor to say that the cleaner was allowed to come.

And the other thing was, I was allowed to get the vaccine in the 1B intake, people with chronic illnesses and immunocompromised people. And I had to provide so much information to get this. And there was one time where there was no vaccine in my local area in the start of the vaccine process. And I had to drive across the city, you know, it was a three hour round trip to get this vax. And then I'd show them my doctor certificate. And I did that for every single vax I had up to about number four. And my husband could just walk in and say, I'm a carer and get his vax. No problem, no documentation, in a local area. And there was times like I'd been turned away a couple of times from getting a vax as well, even though I had the documentation. The burden of proof is enormous.

Emma 22:40

And how do we fix this issue? What's the solution here? I completely empathise with you. I've had similar things.

Carly

Yeah, thank you. I think I mean, I think it's a systemic issue. And I think it's a process issue. And I think I think also the view of disabled people, the expectation is so low, that we are disbelieved that we constantly have to, it's constantly trying to get into the system when the system tries to keep us out, you know. And so I think the systems have to change. It's not us, but also like the Centrelink, for example, every everyone I've spoken to Centrelink have said we're aware of the problems, we're aware of the restrictive practices and policies of getting someone on a DSP, particularly because it doesn't cover illness anymore. It doesn't cover cancer. And they're all aware, but nothing is being done to change it.

Emma

And you recently posted about the level of support you get as a cancer patient to the level of support of the person with with a disability. Can you elaborate on that?

Carly 23:47

Yeah, I've been joking now that I've got the good, the good illness, you know, like it allows you access to so much support that perhaps a patient of another type doesn't get. I'm so grateful for the public health system in Australia, because I other than pharmacy, I haven't had to spend anything for my cancer treatment. It's incredible. And I see how much funding cancer treatment and research gets compared to other types, medical conditions, having been a hospital patient all my life.

I've been applying for Centrelink, and I've been doing those processes. And I'm not believed about anything about my disability. But for cancer, it's incredible, like the way they've just acted so quickly and set me up with so much support. Like I get a psychologist for free, and I get access to a dietician, you can choose to have physiotherapy and exercise programs and all of that. So it's, it's incredible. And the service is just amazing.

And I've never felt disbelief. The other thing is, I haven't been infantilised my cancer and the surgery I had was gynecological. And for so many, particularly disabled women, we are not believed when it comes to gynecological issues or sexuality, or having an active sex life, we're often seen as asexual or we're not assumed to be in relationships. And that hasn't been the case with this type of cancer that I've had, you know, every step of the way I've been treated like an adult, which is what I am. And I know it shouldn't be an anomaly... but gosh, yeah, it's been amazing.

And the other thing that's happened as well is that I've been able to work with my dermatologists to make sure that they're in on every step of the way with treatment, that my dermatologists have been contacted by the oncologist and the gynecologist and everyone. And it's been very good. So yeah, it's been amazing. But then, you know, I can't seem to get the same level of support, definitely not financial, from the government.

Emma

Imagine that you've been in another hospital your entire life for your disability. How has hospital treated you?

Carly

I mean, I've always... I really liked being in a children's hospital. Like I said, I really related to other people in there and felt the care was great. But I have found that... there isn't the facilities that I need in the hospital to look after myself in the way I need when I am at my [?son well]. And I know that's like that for so many people, particularly there might not be a hoist for someone who's disabled, or they might not have the proper access provisions that you need. For me, I need a bath when I'm sore, when I'm very, very sore. And there is no bath in the hospital I go to. So it's easier for me to stay at home and get treatment, do treatment at home myself. And most recently, my times in hospital has been excellent because they've really listened to me as a patient. Yeah.

Emma 26:58

Well, Carly, you certainly have had, today, always, a lot and have advocated for yourself and your condition. What are you most proud of?

Carly

I think I'm pretty proud of changing or helping shift the perception of people with skin conditions and facial difference, particularly in the media. Like I did, you can't ask that a few years ago and talked about what it's like to have a facial difference and how hard it can be with the discrimination. I also am really proud of connecting lots of people with ichthyosis online and also in person. Seeing young people with ichthyosis grow up is pretty special. Some of the doctors put me in touch with families of kids with ichthyosis and so get to see them grow up and help their parents feel a bit less alone.

I'm pretty proud of publishing a book or two books that make a difference to people's lives. So say hello, my memoir, and also growing up disabled in Australia, I know that they have changed people's lives because people told me that... I think being truthful to someone else about your condition is important, but being truthful to yourself about disability and identifying as disabled and knowing that you need access provisions, that's really important.

Emma

And what would access granted look like for you?

Carly

Having a cool and warm environment at various times of the year. I have a bit of an access rider with my speaking agent and it's not very rock and roll. It's not different types of vodka and blue M &Ms. It's very grandma. It's like a blanket, a cold pack, a heat pack, not shaking hands, food. One day I did an event and they provided all my access provisions, which is great. And they also provided me a cheese platter and they were playing savage garden overheads and that was the perfect access.

Emma

Thank you so much for your time today, Carly. We really appreciate it.

Carly

Thank you, that was fun, and you do such great work.

Emma 28:59

Thank you, and I hope we eventually get to meet up in person - and if it's around Christmas time, I know what to get you in the hamper.

Speaker 1 29:16 (OVER MUSIC)

And if you've enjoyed this edition of Access Granted, let us know on Facebook at Powerd Media. That's powerd with just one E... P-O-W-E-R-D, Media.

Emma 29:27

And you can find the next edition when it comes out next week, wherever you download your podcasts.

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