Carly Findlay's Blog, page 20

A good hairdresser experience

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I had a haircut yesterday. The hairdresser kept saying how much she loves my curls. She treated me with kindness and care, and I felt valued. My hair feels and looks good. I have found two regular salons to go to – such a relief after years of discrimination by hairdressers.

One way I measure ableism is by how I’m treated in customer services settings – I’m often treated differently to customers next to/before/after me. With hairdressers there’s an assumption I don’t need to feel and look good, because of my face. So they don’t show care.

There is also a fear of contagion – where they barely touch me. Pincer fingers.

This lack of care can happen in stores too – where I’m ignored, or not given the same type of assistance and attention as other customers. It’s like they think I am too ugly to want to dress well. (Fortunately that doesn’t happen as much now.)

Yes. That’s a thing. It’s low expectations of disabled people.

It implies we shouldn’t take up space or be seen. Or that we shouldn’t feel good about ourselves.

And so it’s a huge relief to be treated equitably – with respect and no discrimination when I’m at the hairdressers or in stores.

It’s hard to be believed when I write about this discrimination. Devils advocates often excuse it like “they were having a bad day”. Others say “well of course they were scared of your skin, they haven’t met/seen anyone like you before”. Or they say I’m overthinking it. Or they just assume I’ve been difficult.

Ableism is often only noticeable to other disabled people who experience it daily. So I ask allies to recognise it too. Ableism is in the way customer service providers treat disabled customers. It has an enormous cumulative impact.

Ableism is the avoidance of engaging with disabled people – not looking at us, not speaking to us, not touching us.

This matters in customer service.

Anyway, my curls feels SO soft and defined, and they feel just as good today.

And I feel happy, relieved & respected.

Oh the hairdressers I go to and whole heartedly recommend:
Neel Loves Curls & Earth to Betty – both specialising in curly hair. Yesterday I went to Earth to Betty .

Image description: A selfie of a woman with a red face, short dark curly hair, wearing a Care Bears tea party print dress and a Care Bears cloud necklace. She’s smiling.

July is Disability Pride Month

July is Disability Pride Month.

It’s a month to celebrate our disabled identity, our disabled community and our disabled culture.

Reaching a sense of pride as a disabled person takes work – every damn day. I didn’t always have disability pride. I didn’t even have disability as part of my identity, even though I’ve had Ichthyosis since birth. It was just over 12 years ago when I met other disabled and chronically ill people and that saw our lived experiences were so similar that I realised that yes, I am disabled, too. It’s been liberating and affirming.

Most of the time I feel fucking fabulous. Being disabled just is – it’s a part of me. I don’t hide it, I don’t deny it, and I certainly don’t stop talking about disability and accessibility issues and rights.

But then I am reminded that the world isn’t for me, or other disabled people, when I (or we) encounter ableism or discrimination. And those moments can undo years of work – leaving me feeling unworthy, embarrassed, ugly, gaslit.

I have been thinking of the shame I have carried with me for as long as I can remember. It’s the shame associated with what I leave behind. The skin on my carpet; the build up of ointment on my phone ear piece; the way people gingerly touch things I’ve touched – their fingers like pincers; a child loudly declaring that I smell. leaving my face print on someone else’s silk shirt after I’ve given them a hug; the suggestion that I use a dedicated toilet in a previous workplace because of the skin that fell from my pants as I pulled them down.
I am wanting to write more about it. But I don’t feel like I’m emotionally fit for that right now.

When I talk to other disabled people about the shame I carry because of my disability, they relate. Their diagnosis is always almost different to mine – but they also worry about taking up space; worry about leaving pieces of themselves behind. And I exhale, knowing someone else gets it. I find comfort in being a part of the disability community. We are stronger together.

Happy Disability Pride Month – wherever you are on your journey to finding disability identity and pride. You belong here.

Image: a woman with a red face, short dark curly hair, wearing a blue shirt with birds and snakes on it, tied at the waist, and a long yellow skirt with blue, green and purple paint details. She’s smiling, hand on a hip, sun coming through the window.

If this post has helped you, made you think differently about disability or you have used it in your work, please consider buying me a drink.

Accessibility provisions for people with skin conditions

I had a friend over today – she said, “yours is the first soap I can use at someone else’s house, it doesn’t hurt my hands”.

Access Is Love, as Alice Wong says.

Skin conditions – especially the severe ones (like Ichthyosis) can be painful, itchy, allergy prone, annoying and can make people self conscious. They can flare for no reason.

Here are some ways you can provide accessibility for a friend or colleague with a skin condition:

Ask if your friend has any dietary requirements, and cater accordingly. I know so many people who have skin conditions and food allergies (like nuts and dairy). I’m very lucky that I have very few allergies (I can’t touch shellfish, but can eat it).Have some low scent/allergy sensitive soap and toiletries on hand for when your friend comes to visit. I have MooGoo hand wash, but there are other options like Sukin and goats milk brands. And keep some sensitive dishwashing liquid and latex free gloves under your kitchen sink – in case there’s a time your friend does the dishes.Similar to the soap, keep indoor areas fragrance free. Avoid wearing heavy perfumes or deodorants, and don’t spray air fresheners or insect spray close to your friend.Ask whether the temperature is ok – and adjust accordingly. Many people with Ichthyosis (and other skin conditions) cannot regulate our temperature, and so are often sensitive to very cold temperatures, or the heat. I have often frozen when I’ve gone to peoples’ houses and been sore because they haven’t turned the heater on – but it’s not as easy as just putting a jumper on for me. Similarly in the unbearable heat in summer, I am so thankful when someone turns the aircon on for me. When I was working at Ubud Writers Festival, all my events were in airconditioned venues (most were not), and this benefited me and the attendees.It’s not always possible to catch up outdoors. See the temperature point. I’m finding that covid safety rules and recommendations sometimes conflict with my access needs and this can make for very uncomfortable outings (or I don’t go at all).Get vaccinated (for covid and many illnesses) and wear a mask. If in doubt, ask how you can make things more accessible for your friend with a skin condition.

Obviously my experiences are my own, but I do know they’re not unique to me (because people with skin conditions compare notes!).

Have you got any tips to share?

Has this post helped you or made you think? Will you use it in your workplace or school? Please consider buying me a drink!

Image above: a blue background with lots of Care Bears and stars and rainbows on it. An orange box with white text says “Accessibility provisions for people with skin conditions” and a purple box with text that reads: “CarlyFindlay.com.au”

Stop apologising for your appearance

If you don’t have a skin condition or facial difference, please don’t apologise for your appearance. Don’t apologise for having a red face, or for not wearing makeup, or for your greasy hair or dandruff.
No, you don’t look shit (as I hear so many people describe themselves).

You have beauty privilege. I expect it would be very rare for strangers to comment negatively on your appearance. Yet for me and others with skin conditions and facial differences, our appearances are commented on frequently, we are discriminated against regularly, and we feel the need to apologise and hide away.

When you apologise for your appearance, it’s telling us that we need to apologise for ours. We don’t. We deserve to be seen and exist unapologetically.

Please be good allies – not just in Face Equality Week but always.

Image above: a woman with a red face, short dark curly hair tied back, wearing a teal jacket over a pastel striped jumper and bright pink floral pants. She’s standing near a maroon wall, hands in pockets, smiling. To the left is white text that says “stop apologising for your appearance.”

Has this post made you think? Will you use it in your work or school? Please consider buying me a drink.

When I ask you to see me

Image: a woman with a red face, short dark curly hair tied back, wearing a dress with colourful patterns on it, sitting at a cafe table, smiling. A hot chocolate . is in front of her

Some people get confused when I talk about being tired of the stares, comments, questions and discrimination because of my face. They aren’t sure what to do, sometimes even asking “well do you want people to look at or ask about your face or not?”. It implies I can’t have it both ways. That I can’t ask for people to see me, but also not perpetuate the tiring micro-aggressions and outright discrimination.

But I can.

When I ask you not to stare, or ask me intrusive questions, I’m asking just that. I certainly don’t want people to launch into a question or comment about my face when they haven’t even said hello (which is why I called my book Say Hello). I am not an object of curiosity.

When I ask you to see me – I’m asking you not to look away, not to be fearful, and not to discriminate based on my facial difference and skin condition.

When I ask you to see me, I am asking you to see my joy and intelligence and humour and confidence – to see that I love and am loved, and that I am happy. Please never pity me for looking the way I do.

When I ask you to see my disability I’m asking you to see the disabling barriers and discrimination I endure, believe that it happens, and do your part in dismantling it.

When I ask you to see me, I’m asking to be treated with respect – like you’ve treated the people without facial differences and skin conditions.

It’s the last day of Face Equality Week. Face Equality is a human right, and it needs to be recognised as such every day.

Has this post help you think differently about facial difference and disability? You can buy me a drink here.

PS: Here’s my book Say Hello – available in paperback, ebook and audiobook worldwide. Find it here.

On difficult responses to my face

Once when I was on my way to work I asked for a seat on the train, because I was sore. The man refused, kicking up a fuss. He asked me why I need a seat, I said I was disabled, and I’m off to work. He said because I’m working I must not be disabled, and so didn’t need a seat. No one spoke up.

A little while after that, someone served me at the post office through the after hours pigeon hole. She was visibly scared of me as she opened the door. And when I asked her if she was scared of my face, she said no, and then returned with my mail, saying , “I’m really sorry, I wasn’t expecting it”,

The next year I sat on the train, looking at my phone, and the woman sitting next to me glanced over, saw me, and gasped. She got up and left. She was embarrassed but I was humiliated.

Earlier this year a group of young girls were staring at me in a cafe, and after a lot of me smiling, trying to make conversation, and then eventually telling them that staring is rude and I’d like to eat brunch and talk to my friend in peace, the adult who was with them told me she’s not their parent, that she works in disability, and that one of the girls has a certain medical condition – as if that justified the behaviour.

And then there’s the countless taxi drivers who have refused to take me, because they’re scared of my face. Sometimes they tell me but mostly they make an excuse that can’t be proven as discrimination. But I know it is.

When someone shows you that they’re scared of your face, it is devastating. I can’t explain the exhaustion and self consciousness that comes with this – even as a confident adult, expectant of this behaviour.

And then, when I write about it online, I get that secondary ableism as i mentioned the other day. People doubting that it happened; saying I’m overreacting or lying; suggesting that person had a bad day, or that I expect too much; or that of course kids are going to be honest and say they’re scared of my face. It makes me not want to share my experiences publicly.

I hope that the posts I’ve shared this Face Equality Week (and in Ichthyosis Awareness Month) have helped you think and change your behaviour and perceptions, and believe us.

I’m not posting this to gain sympathy. I am absolutely aware of my privilege compared to many others – and I can say that (perhaps because of my public profile) the majority of interactions I have with strangers are positive. But it doesn’t mean these encounters, and then the gaslighting that comes when I talk about them, don’t hurt.

Has this post helped you or made you think? Will you use it your school or workplace? Please consider buying me a drink.

Face Equality is a Human Right

It is the end of Face Equality Week – this is an annual initiative by Face Equality International – for which I am an ambassador. The theme is Face Equality is a Human Right – and they want to see this recognised formally so we have avenues for support and recourse.They have released a report which explores the impact of discrimination, micro aggressions and abuse on people with facial differences. This is important research and it validates our experiences – and it is good to see Australian organisation’s including thr Australian Human Rights Commissokn and the esafety Commissioner share it. Check out their other resources here.

(Image: selfie of a woman with a red face, short dark curly hair tied back, wearing a light purple and white floral dress, and sparkly purple owl brooch. She’s smiling.)

I wrote a piece for Face Equality Week – it’s below. I have also shared a lot of posts on my instagram and Facebook. I wrote this post on my socials today – the response was amazing.

I’m a writer, speaker and appearance activist. I identify as a disabled woman with a facial difference. These are integral parts of my identity – that I am now very open about. Years ago I denied my facial difference – and certainly didn’t see myself as disabled. It’s not like I pretended it didn’t exist, I just didn’t see it as part of my identity or as anything to be proud about.

I have a rare severe skin condition called Ichthyosis – the type of Ichthyosis I have is Netherton’s Syndrome. I was born with it, and there’s no cure. It is also classed as a chronic illness. I shed a lot of skin, I get itchy, am susceptible to infections and experience chronic pain most days. While my face is the reddest part of my body, it’s my legs that are often the most painful. 

The physical symptoms of Ichthyosis – especially the pain – can be really hard at times.

But it’s the comments, stares, taunts, laughs and discrimination that are the hardest to manage.

Last year, an interviewer asked me what’s the difference between appearance diversity and disability. I was thrilled, as it’s a topic I have wanted to explore in my writing for a while. In simple terms – I experience disabling barriers due to my facial difference. These are mostly discrimination and microaggressions.

I discovered the social model of disability around 10 years ago – it means society puts up disabling barriers that can be removed, and that our bodies are not broken and not to blame for encountering disabling barriers. 

A few years prior I mentored young people with chronic illnesses and I also started writing and presenting for disability media. It was through reading and meeting disabled and chronically ill people that prompted me to explore my own identity. I realised that even though we had different diagnoses, the barriers we encountered were very similar. We all had lots of time off school and work to attend hospital as outpatients and inpatients. We all experienced discrimination.

I get judged before I open my mouth to speak. People stop what they are doing to look at me, whispering and giggling. I am asked intrusive questions about my medical history, and I am prayed for and preyed upon by snake oil sales people.

My photo has been misused and ridiculed online – shared on forums, and I’ve even had hate art made and distributed on Twitter. I’ve been discriminated against by more taxi drivers than I can remember – they’ve been scared of my face. I’ve also been told that they are allowed to refuse my fare if my face makes them feel scared. This devastates me.

When I’ve reported the online abuse to the social media platforms police and the eSafety Commissioner here in Australia, very little can be done. There doesn’t seem to be any laws against disability hate crimes – which is what appearance based online abuse is.

Perhaps the moderators of the social media platforms haven’t had lived experience of disability and facial difference to recognise it for what it is. 

When I’ve reported taxi driver discrimination to taxi companies, the Taxi Commission and the Human Rights Commission, very little can be done. The drivers aren’t fined, no further training is delivered, the taxi company isn’t fined, and there is no compensation to me. 

I don’t know what more I have to do – I’ve done media around this, delivered training, reported it officially and on social media – yet it still happens. 

There are never any consequences for their discrimination. 

I feel that it’s still accepted to mock and mimic people with facial differences. We see it in film and TV – with characters with facial differences being portrayed as villains. Just as the way disability is often portrayed by non-disabled actors, facial difference is portrayed by actors with beauty privilege.

And often those of us with facial differences are seen to be overreacting or imagining things when we speak about or report microaggressions and discrimination experienced; or raise the issue of facial difference mimicry in film.

Attending the Appearance Matters conference and meeting James Partridge and discovering the work of Changing Faces in 2012, and then later Face Equality International was also pivotal. I finally had a term to describe my red face. A facial difference. The work James and his team had done was also life changing.

Many people with ichthyosis (especially less severe types) don’t identify as being disabled. 

Yet the mental health impacts are high, and mental illness is classed as a disability. 

This is ok – people can identify how they wish. But I also think it’s important to acknowledge the human rights and disability activists who have come before us, and to recognise that people with facial differences should be protected by human rights policies and laws.  

Face Equality is a human right. And so discrimination against people with facial differences needs to be supported by a human rights framework. We need to be able to report discrimination and hate speech and it be taken seriously – worldwide.

More info on Face Equality is here.

This is also an excellent video from Children’s CranioFacial Association in America.

The Project Disability Day feature

Thanks for having me, The Project -so great to see Disability Day as the leading story. Kurt Fearnley and Andy Hensel are both doing such great work, as are millions of other disabled people, leading ordinary and extraordinary lives.

The Project’s Harrison and Stu were so great to work with, too. Such a great experience. Thanks for fitting me in! And I enjoyed the commitment to maintaining accessibility in a post covid world from Jan Fran, Hamish and Susie Youssef at the end of the segment.

(Also, I had a giggle at the footage that aaa shown of me and my colleagues in the Melbourne Fringe office from when I started working there – Job Access brought a massive film crew into the tiny office, just to film me. I was pretty new at Fringe and I was mortified.)

Video: a segment from The Project TV show. There are three different people being interviewed – me, Kurt Fearnley and Andy Hensel, plus cutaways to clips of other things we’ve done.

Reflections on turning 40

CW: ableism, eugenics – but a happy ending

Images: three photos of when I was born – in 1981. One is me close up, a tiny baby with red skim. One is my mum holding me. And one is my dad holding me.

I felt reflective earlier in the month – thinking about turning 40.

Forty seemed ancient when I was little. Dad used to say, “you’ll still be my baby when you’re 40”. He called me today and said I’m still his baby. He told me how strange it was when I was born – that I was whisked out of his arms quickly, placed in a humidi-crib, and that the doctors hadn’t seen anything like me before. Ichthyosis was rare, it still is (probably even rarer with pre-natal screening).

Forty seemed unlikely when my parents were told that I wouldn’t survive many months. Forty seemed unlikely when I experienced fear, teasing and discrimination from a very early age. Happiness and self love seemed unlikely when I just wanted to change my skin to fit in. A career that I enjoyed and was good at seemed impossible with all the low expectations within workplaces of my 20s and early 30s.

Something shifted at 30. I found myself, and what I wanted to be. I found disability as an identity and culture. I found community. I realised it was others’ ableist perceptions of me holding me back. And I defied those.

The last ten years have seen me thrive – I am so happy and self assured. I love work and I love my friends and family. It’s much easier to love myself than to hate myself, as I did for years.

I congratulate every new parent on the birth of their child with ichthyosis – I never offer sympathy or apologies, like the many messages they will receive (in good faith of course). I tell them that life will be hard, but it will be amazing. Because I am proof of that.

I never saw my parents grieve for a life they could have had, with a child without ichthyosis. They never grieved over me. I only ever experienced them giving me the best life possible. I have no doubt that their choice to move to Australia to live a more free life shaped that. I’m so thankful to them, and to everyone who has helped me get to 40.

Life with Ichthyosis can be ordinary and extraordinary. My parents never told me otherwise.

Using social media to educate children about facial differences

This morning I endured a difficult situation with children and their parent – it was due to fear of my face. I wrote about it here. And many people relate. 

View this post on Instagram

A post shared by Carly Findlay OAM (@carlyfindlay)

One of the things that has made a huge difference to me meeting children is when their parents introduce me to them via social media. 

I love it when I meet a friend’s child and they have already seen me. They’re already used to me face. My friend may have shown their child my photos and videos on social media. Their children know who I am, they aren’t scared, and see me as a friend already. It’s been joyous to meet children who are prepared for me.

(Sometimes I get sent lovely comments from kids via their parents on social media – complimenting me on my dress or smile, and even on my “pink sparkly skin”. This makes my day!)

I love that we can all just get on with our day – without embarrassment, difficult questions or outright fear. (All of which makes for a very difficult meeting.)

Generally a person with a facial difference has already done some work to educate others about their lives. What questions are polite to ask, what does discrimination look like, and how we’d like to be spoken to

Although it’s important for us to educate younger generations, the burden shouldn’t be on us to be the sole educators. Parents should use the vast resources we’ve created – our social media accounts, books, articles, art, music. Please don’t set up the expectation that we will answer every question your child asks us. Maybe their question is the first we’ve had that day, but it could also be the tenth, and the cumulative impact of curiosity is tiring. Preparing your child before meeting people with facial and limb differences, skin conditions, disabilities and other visible differences is a great way to show allyship.

I know it can be embarrassing when your child asks about someone’s facial difference, skin condition or disability, but it’s also traumatic for the person who’s the subject of the questions or fear. So it’s important you prepare your children.

Use social media for good. Follow and engage with lots of people who don’t look like you, and show your children too.

Social media can be cruel, but this is a great way to encourage kindness.

Check out Face Equality International’s destigmatising facial disfigurement resource.    

If has this post has helped you, please consider buying me a drink.