05 December 2016

My face scared my cleaner away today

This is my face up close. It's red, shiny and a bit lopsided because of a dodgy lymph node that flares up because of my inflammation. It's usually very smiley. Sometimes my hair is out of control, and sometimes there's a few bits of wayward skin hanging off my face and hair. This is who I am. 

 

Earlier this year my face scared the post office worker. Today it scared the cleaner. So much so, she ran away without completing the job. 

It's exhausting having a face that can scare people. Even more exhausting worrying I'm seeming like a victim as I recall events like these. 

I work from home now. Every second Monday a cleaner comes. I usually leave the house to go to the library when they come, but today I needed to stay home until I finished something. 

I greeted the cleaner, saying hello. She jumped, visibly shocked at my face. I let that one go. 

A few minutes later I went out again to tell her to let me know when she needs to vacuum the room I'm in, and I'll move for her. I spoke before I was in the room. As she turned around to look at me, she jumped again. 

I told her "please don't be scared of my face", and said this is just how I look. I returned to the other room. 

20 minutes later, I finished the task at hand, and realised I couldn't hear or smell any cleaning being done. I looked through the house. It's not very big. She wasn't here.

She just left. Didn't lock the door. Didn't let me know. She left because she was scared of how I looked. 

After a couple of calls and texts, I eventually spoke to the cleaning agency manager - angry and upset. The manager told me the cleaner did not know how to react to my face so she left. She was scared of my face and so she left. 

The manager tried to placate me, saying this is a misunderstanding. She said this wasn't cruel or unprofessional, nor is this discriminatory. 

I told her that I'm quite familiar with people's reactions towards me, and I don't need a service provider reacting like this in my own home. She apologised and she will come to clean my unit herself. 

About 15 minutes after the phone call, the cleaning agency manager came and she was extremely apologetic. And empathetic. She did say it's understandable because the cleaner had not encountered someone like me before, and that it's not often I'm home. I said it is not justifiable, and as someone on the receiving end of curiosity and fear, it's exhausting to deal with stuff like this. 

I had specifically chosen this cleaning agency because they gave me a chance to be up front about my skin, and I didn't have to explain it to each cleaner.. I am also really nervous about my skin, so I didn't want to freak a cleaner out about the skin on the floor.  

I asked the cleaning agency manager if I can deliver training to her staff, so they might understand the firsthand impact of such ignorance and unprofessionalism. I said that although the cleaning agent has already spoken to this cleaner, it might help if the cleaners learn the impact of this behaviour from a person who's been on the receiving end of it. 

As I got in the car to go to library, the cleaner was outside my block of units. She was there to give back my keys, which the cleaning agency manager now had. But why was the cleaner still there? I asked if she was ok, you know, just hanging around. No apology. She just looked away.

There might have been more to the story, as a friend asked on my Facebook today. But cultural background and working visas should not have played into whether someone is too scared to do their job they're getting paid for. Would it be acceptable for a waitress not to serve me because they were scared? Or a doctor not to treat me, because of this cultural perceptions of people with facial differences? No.

This is what I envisage will happen. The cleaner will get a talking to. She will giggle to her friends about seeing me. She won't be rostered on to work with someone "different" again. And her small-mindedness and reluctance to see anyone who looks different as human will continue.

Some people who don't get it will say "it's understandable that people are scared" or "of course they'll be startled if they haven't seen someone like you before..." But they will never say "this must be tiring." There's an expectation to be polite, to educate, to take it because my face is unexpected. But I'm angry. And upset.

These are the microaggressions I face - about my face - on a regular basis. It is not up to me to make someone else comfortable about the way I look.

Here's a simple guide for encountering someone who looks different: 

  • Say hello. Smile at us. 
  • Apologise if you showed you are visibly startled. 
  • If we provide you an explanation like "I was born like this", accept it and get on with what you're doing. 
  • Ask polite questions, only if you feel it will add to your day. Preface them with "I hope you don't mind me asking.."
  • Don't just leave a job we've hired you for because you're scared of our faces. 

Has this blog helped you or made you think? Why don't you "buy me a drink" by contributing to my Patreon? Or better still, hire me to give your company some training in diversity. Thanks! 

Two pieces I've written for the media on the weekend - ABC and Kidspot

Last week was huge. Busy, so busy. Between day job and freelancing, I wrote seven articles for the media. And here are two of them. 

I was invited to write for the ABC (our national public news service) which I was so excited and proud to do. This is the first in a series about disability and health. 
 

The article is about navigating the Australian healthcare system with a disability, and provides some tips to doctors. 

"My pointers for health professionals: 

  • Listen to us. You can learn as much (maybe more) from our lived experience as you can from a textbook.
  • Talk to us about our whole lives. It can be uplifting for a doctor to be excited about what's happening for us, away from our conditions.
  • Don't show too much excitement at treating a rare patient for the first time.Sometimes that feels like you've won a prize.
  • Let us help others who may be struggling with similar conditions. Invite us to speak at medical events or put us in touch with families.
  • Mind your language, especially if you're a doctor who writes for publication or uses social media. Terms like "healthcare burden" are really damaging. Also I don't "suffer from" ichthyosis, I "live with" it.
  • Take a step back to reflect on how far your patients have come, because of the treatment and empathy you've shown. Many of us we owe our lives to you. Thank you."
Read the article hereand contribute to the discussion here

The other article was for Kidspot. It's my response to a Mamamia article that I felt was a shallow whine. The writer couldn't find her makeup to wear to work, and so had to hide. I address the beauty privilege of the people who are afraid to go makeup free, and the expectation to wear makeup. I make no apologies for my views on this. 

 

"Minutes before I read Jessie’s article, I’d watched a harrowing piece on Lateline that told the story of an intellectually disabled woman who had been sexually abused by 10 people through her life.

Later that day, as people were telling me how judgemental I was for my reaction to Jessie’s article, I found out a newborn baby in Bangladesh was killed by village men because it had Ichthyosis - the same rare severe skin condition as me. They were scared of its appearance and thought it was cursed. It was no wonder I thought Jessie’s worries about not having makeup to wear to work was shallow.

I’ve found the people who are applauded for going makeup free (like Alicia Keys earlier this year ), or feel afraid to go out in public are the people, or participate in no makeup challenges (radio host Kristie Mercer did a year ago) almost always meet conventional beauty standards. They’ve got a beauty privilege."


While I don't believe people with facial differences and disfigurements should be teaching lessons for those like the Mamamia writer, I do hope she and others take something away from my perspective. 

Read the article hereand chat about it here

I hope you enjoy these reads as much as I enjoyed writing them. 

Have you listened to my podcast yet? Tune in to Radio Carly by listening to Refreshments Provided

28 November 2016

My chat on The Osher Günsberg Podcast


 Polaroid of Carly Findlay in Osher Gunsberg's hand.
(Image from Osher Gunsberg's Instagram)

A little over a month ago, I was interviewed by Osher Günsberg for his podcast. He's the host of The Bachelor. I love his podcast - he's podcast royalty to me, so this day was A Big Deal. In person, he's very funny, very welcoming and a good listener. 

I turned up at his hotel feeling really awful. Sore, a bit shaky, and as I told him, if it wasn't for how long this interview took to set up, I would have called in sick. He immediately saw I was cold and offered me a blankie. 

He is a pro interviewer, making me feel at ease from the start and asking really tough questions. There were a few minutes where I was quite uncomfortable when he probed me about my relationship with social media. I'd never been asked to think about it in that way. It was good to think about this stuff, and reflect on how I deal with people who are difficult to deal with on social media. 

Of course I talked a lot about appearance diversity and the importance of media representation, which I think he really got. I said to him that I really admire how he has taken control of his mental health story rather than the media telling it for him, and that is what I aim to do, too. 

You can listen to our chat on iTunes or via the stream from his website

I watched Osher (Andrew) Gunsberg on Channel V from when I was a teen. And a little of Australian Idol. Now he hosts The Bachelor, which I don't watch (apart from three episodes). And then when he released his podcast three years ago, I started listening to him again. I've listened to most episodes from the start and often tell him what I think on Twitter. His guests always give me something to think about, even when I'm not into what they do or agree with their views. And he gives a lot of himself on the podcast too. As we discussed after the recording, I often wonder how he is doing week to week, because he's so open about his mental health. 

At the end of our chat, I said I was feeling a little better, he said it was the magic hotel blankie. 
 

I pitched myself to him earlier this year. It took ten months and several emails to get to our chat for the podcast! The moral of all this is, if you like what someone is doing and want to collaborate with them, just ask. Doesn't matter if they're a media superstar, or if you've grown up watching them on tv. If you like what they do and want to work with them in some way, tell them their work means something and ask if you can be involved. They might say yes! 

We also had a little chat for my podcast - listen to that here

Thanks for having me, Osher!


27 November 2016

Meet me for a gallery wander and a drink!

 

I've been wanting to meet more of my blog readers for a while. You are so lovely, thoughtful and supportive, and I appreciate the rich discussions you have on my blog, Facebook and Instagram. It's my birthday in December, there have been big milestones on my socials, and my blog turns 7 too, so what better reason to celebrate?! I asked Facebook if you wanted to meet up for a drink, many of you said yes and so I'm making this happen. 

You're invited to the National Gallery of Victoria (NGV) to see the Viktor and Rolf art and fashion exhibition and then have a drink with me. You don't have to have an alcoholic drink - a something fizzy or a cup of tea is fine by me! I hope you will form some IRL friendships amongst yourselves too. 

Date: Saturday 10 December 

Time: 1.15 pm for a 1.30pm start.  We will finish at 3.30 pm 

Where: National Gallery of Victoria, 180 St Kilda Road Melbourne. Meet in the NGV foyer for exhibition, and then we go for a drink. And probably a cake because I love cake. 

What will we see: Viktor and Rolf exhibition and then a drink at one of the dining places in the NGV. 

The exhibition is $18 or $15 concession. Drinks and cake at your own cost. 

RSVP on Facebook (or email if you don't have Facebook). 

I can't wait to meet you! 

Information about the exhibition and gallery is below.

Exhibition details: 

"The spectacular and avant-garde creations of Dutch fashion designers Viktor & Rolf are on display in Australia for the first time in an exhibition organised by the National Gallery of Victoria in close collaboration with the designers.

Viktor&Rolf: Fashion Artists explores Viktor & Rolf’s radical conception of ‘wearable art’. Since forming their creative partnership in 1992, Viktor Horsting and Rolf Snoeren have gained critical acclaim for their cerebral and witty approach to couture. The exhibition, which coincides with the luxury fashion label’s twenty-fifth anniversary in 2017, explores the elements that make Viktor & Rolf designs unique in the contemporary fashion world."




Getting to the NGV: 

PUBLIC TRANSPORT

TramsSwanston Street/St Kilda Road trams (1, 3, 5, 6, 8, 16, 64, 67, 72) travel past NGV International. Alight at the Arts Precinct stop.

TrainsAlight at Flinders Street Station and walk across the bridge past the Victorian Arts Centre.

BY CAR

Parking is available in the Victorian Arts Centre car park located beneath NGV International. Enter from Sturt Street, Southbank, accessed from St Kilda Road/Southbank Boulevard and Alexandra Avenue/City Road.

TAXIS

A taxi rank is located across the road from Federation Square outside Flinders Street Station.



 

24 November 2016

This is how two different types of Ichthyosis look, feel and are treated.



 

I got to hang out with Kyri just before I went overseas. We were in Sydney for an award ceremony . It was so much fun, and we realised how much we have in common. We could not stop talking. 

Kyri and I both have Ichthyosis - but different types. It seemed that our commonalities were more social than medical, though. We thought it would be fun to do a comparison blog post - to show how vastly different two types of Ichthyosis are, and also to show that one treatment does not work for all. Enjoy! 



Her skin is white. 

My skin is red.

Her skin is more resilient than mine. She tells me "my feet are very thick and tough and I can walk barefoot easily, but my skin can be fragile elsewhere."

My skin is fragile, especially on the bottoms of my legs. It's susceptible to infection. 

Her ichthyosis is most obvious on her back and torso. 

My ichthyosis is most obvious on my face - but most painful on my legs and arms.

I use medically prescribed paraffin to moisturise, all over my body twice a day, and more on my face as needed.

Kyri uses Lush Dream Cream on her body and Lush Celestial Cream on her face, and lots of lip balm because her lips crack.
 
Her body has a big skin shed regularly and this makes her feel better. "My skin sheds constantly, and I have four big sheds a year as the seasons change which make me feel tired and a bit cranky temporarily then better after. 

When my body has a big peel (usually about once every 18 months, but now more frequently), it's so painful.

Kyri takes accutane which is really helping her. She says accutane is wonderful because it makes life a lot less painful. She says "Accutane reduces the thickness of the scales a lot and stops the skin drying out so quickly, but makes my skin much more fragile (grazes become cuts) and susceptible to sunburn."

I'm not on any regular drugs. I take antibiotics and painkillers occasionally. 

We both feel pain. 

I am susceptible to infections.

Kyri used to get infections more often than she does now, again accutane - pre accutane my skin would split open along the scale lines regularly. 

 

She doesn't feel the cold as much as me.

Kyri's feet soles are thick with skin. 

My feet aren't as thick with skin. 

Kyri has very long, thick hair on her head. She also has body hair. 
Mine doesn't grow long, is thin and slow at growing. I have no body hair. 

My scalp has obvious scales.

Kyri's scalp doesn't have many scales. She told me "my scales in my scalp were much more common pre-accutane, by the way. I'd shed everywhere a lot more, too."

She told me she doesn't shower frequently, because water makes her skin too sore. "My skin dries out and shrinks together causing splits, and it's also much much more itchy for about 24 hours", she says.

Meanwhile, in the time we spent together (3.30 pm Wednesday -
12.30 pm Thursday, I'd had two showers. My skin body would feel so uncomfortable without a shower.

Kyri woke up with her face looking like it did before she went to sleep. 

I woke up with my face scaly and unable to move it.

 

Kyri'a hair is so long and silky. "My hair also grows very fast. I have less body hair than most women, but I have more than you", Kyri says.

My hair is short, and breaks off. It doesn't grow much. I have almost no body hair. 

I find it it more comfortable to wear tights and long sleeves every day. This keeps me warm and protected from the elements and scratches. 

Kyri can't cover up as much as me or she would overheat. She is fine wearing short sleeves. 

We both get tired easily - Kyri probably more so than me. 

Kyri sweats a little.

I don't sweat. 

I don't have eyelashes and only sparse eyebrows. 

Kyri has both eyelashes and eyebrows! So envious! 

We are both shorter than average. 

We have both felt self conscious about our skin and have covered up to avoid embarrassment. We have become less self conscious as we've aged. 
 
 
We are both very outgoing, and we talk and laugh a lot. We both love fashion and taking selfies. 

Our treatments vary. What suits me doesn't work for Kyri. When you suggest a product that you love, don't assume it will work for everyone with ichthyosis. See my medical shaming post for more on that. 

We don't look the same but we both have Ichthyosis. 

Has this blog post helped you or made you think? Please consider buying me a drink to show your appreciation. Thanks for reading! 


Have you listened to my podcast yet?  Listen to Refreshments Provided here.

21 November 2016

Seven books to help kids with Ichthyosis (and help kids learn about Ichthyosis).

 

Last week, a mum in one of the Ichthyosis groups I belong to asked about books to teach kids about Ichthyosis (and visible difference). The thread was soon filled with suggestions - and I asked if I could collate them and others I've found useful into one blog post. They said yes, of course. It's a great community.

I've put together this guide to books suitable for young children, older children and parents, and also some school resources for parents and teachers. They are relevant for kids and adults with all sorts of visible differences too. Among them, three of them have been written by parents or grandparents of children with Ichthyosis, and four are by Australian authors. Perfect! I've read them all!

If you are parents of children with or without visible differences, I'd love it if you could take some time to read this, to help teach your kids about what it's like to look different. Reading just one of these books to them might just make the difference to a little one who is excluded because of the way they look. 

I hope you find these useful. 

(There are no affiliate links here, and ice tried to source Australian retailers to support local. A quick Google of each will take you to international retailers.)

Books for younger kids:

Maddy and Ma - Barbara Jarvis

 

Maddy and Ma, by Perth-based Barbara Jarvis, is based on a true story - the bond between a little girl and her brother (who both have Ichthyosis) and her grandmother. 

Barbara told me

"Maddy and Toby have learnt there are certain things they can’t do because of their skin condition but their family have always focussed on what they can do rather than what they can’t do. I think it’s so important that we instil in our children a sense of self-worth and a positive approach to life, whatever their situation.

Maddy and Toby have grown up used to regular visits to the “skin doctors” and daily “creaming” to ease their skin’s dryness and itchiness because they “have a skin condition”. I once saw a TV documentary on dolphins and learnt about the rare pink dolphin. It struck me that Maddy is like that rare and very special pink dolphin. She loved the analogy."

Buy Maddy and Ma here. (Proceeds go to the Perth Children's Hospital Foundation.) 

True Blue Hand - Ainsley Kyder-Gould
 

Written by my friend Ainsley Kyder-Gould, whose young daughter has Ichthyosis, True Blue Hand helps to start a conversation about appearance diversity. 

Ainsley wrote about the book on my blog earlier this year.   

Ainsley and her beautiful family live in Melbourne and I love catching up with them.

The website's blurb: 

"True Blue Hand is a sweet tale of a little girl who happened to be born with a unique blue hand. Through a children’s conversation at the park the story promotes a positive example of how to be curiously kind when dealing with uniqueness."


Elmer - David McKee
 
 

I was recommended Elmer by Random House, who provided books for the kids at the Australian Ichthyosis Meet in 2015. I used some of the crowd funding to ensure all the little ones had this book. Some mums have told me the book has really helped their kids. 

From the Elmer website

"The stories are suitable for early exploration of the themes and issues relating to the concept of diversity, as Elmer discovers that when he tries to change his appearance in order to 'blend in' with the other elephants, they no longer recognise him, or accept him as one of their own. This makes Elmer sad, and he experiences how it feels to be treated like an outcast, after being ostracised by his old friends. It's only when it begins to rain, and the grey paint that Elmer has covered himself with starts to disappear, that Elmer's 'true colours' are revealed, much to the surprise and delight of his friends, who preferred his multicoloured and fun loving persona. Following their happy reunion, the elephants reassure Elmer that they love him because of his differences, and not in spite of them, and they celebrate by painting themselves in multi-coloured paint, in recognition of Elmer's unique appearance and personality."


Books for older kids 

Ugly - Robert Hoge
 

Ugly, by Robert Hoge (from Brisbane), is an adaptation of his 2013 memoir - especially for young readers. I did an interview with Robert here.

From Booktopia: 

"Robert Hoge was born with a tumour in the middle of his face, and legs that weren't much use. There wasn't another baby like him in the whole of Australia, let alone Brisbane. But the rest of his life wasn't so unusual: he had a mum and a dad, brothers and sisters, friends at school and in his street. He had childhood scrapes and days at the beach; fights with his family and trouble with his teachers. 

He had doctors, too: lots of doctors who, when he was still very young, removed that tumour from his face and operated on his legs, then stitched him back together. He still looked different, though. He still looked ... ugly. 

Ugly is the true story of how an extraordinary boy grew up to have an ordinary life, and how that became his greatest achievement of all."


Wonder - RJ Palacio
 

Wonder is written by RJ Palacio and I've devoured it in a day. 

Wonder is a fictional children's book about August (Auggie) Pullman, a young boy born with a facial difference. He's got a genetic condition which affects his facial structure and his hearing. RJ Palacio was inspired to write this book after an encounter she had with her sons and a little girl with a visible difference. As a reader with a visible difference, I will say that it's very well researched. It could well be an account from an actual person.

On the first page, Auggie says:
"I won't describe what I look like. Whatever you're thinking is probably worse."

We never know what Auggie looks like but we get an idea from how he's treated.

Wonder documents his first year in mainstream school - the challenges of making new friends and fitting in. The descriptions of being a primary school student who looks different brought back many memories for me - it's interesting reading it from a young character's perspective when I've experienced similar. Auggie is teased, excluded (some of the other students invented a game called The Plague, where they believe if they touch Auggie they'll catch something), and physically bullied. He has a few genuine close friends but it takes a while to feel accepted.

My review is here.

This has been one one of my favourite books of all time. Again, I gave all of the older children and adults with Ichthyosis a copy at last year's meet. One of the tweens who attended told me she treasures the book. 


Ride High Pineapple - Jenny Woolsey
 

A blog reader turned friend wrote to me to tell me she has penned a booked called Ride High Pineapple. Jenny Woolsey, also from Queensland, has Crouzon syndrome, and her daughter does too - so she has firsthand knowledge of what it's like to live with a visible difference. 

It's the story of Issy, who has a facial difference, getting bullied and then developing a strong sense of resilience through finding a hobby and having an adult mentor to show Issy her worth . It's a great book for young teens. 

I enjoyed this book and wish I had it when I was a teen. 


Books for parents and teachers 

A Different Beautiful - Courtney Weatlake
 

Written by Courtney Westlake  mum of Brenna, who has Ichthyosis, A Different Beautiful is a journey of raising a child with Ichthyosis. I found it to focus on religion more than Ichthyosis, but it has some good messages about how to talk to children about visible difference. 

This passage was my favourite of the book. 

"More times than I can count, I have been thrilled when a family has approached us who has recognized us from social media, wanting to say hello… only to be dismayed when that family’s children stand back and furrow their brows at Brenna’s appearance. It is clear that although the mother has apparently enjoyed reading about our daughter and seeing our family’s photos online, she never took the time to share with her children. Often mothers will share with me how Brenna’s story has helped changed their perspective regarding special-needs parenting and differences, but then, it is obvious by the confused reactions of their kids that they haven’t yet thought to pass those lessons on to their children. If we allow stories and experiences to inspire us for a moment, or even to begin changing our hearts, but we don’t take the time to show our children and teach our children about these new perspectives, we are missing the point. If it starts and stops with us, we will never see real and lasting change in the hearts of those around us and in the way our children see themselves and treat others."

These resources I've collared are so needed because, as parents tell me, their children with Ichthyosis are still being teased and excluded at school. It might well be because parents aren't talking to their kids about appearance diversity. 


School resources 

The Ichthyosis support group in the UK has an excellent pre-school and primary school resource - for teachers and students. Download that here.  The Ichthyosis Support Group also has a story booklet that you can get here.

Changing Faces school resources  features information for teachers and students at all stages of the education system. View those resources here. 

It also features a kit on teaching Wonder

Of course, I have also written a lot of information about coping with Ichthyosis on this blog - including:
Are there any more resources you recommend?

Has this post helped you in some way? Perhaps you'd like to buy me a drink for my efforts in writing this blog. 




14 November 2016

Ichthyosis and medical shaming.

I've seen body shaming, food shaming and now medical shaming - where people are made to feel guilty or fearful for their medical treatment choices. It is also where people are recommended non prescribed treatments from the unqualified. It fits into the category of unsolicited advice, doesn’t it? The most amusing is when people tell me petroleum based products will kill me - while they’re smoking a cigarette.

I use a mix of paraffin - which are petroleum products. I try to avoid harsh chemicals like sodium laurel sulphate where I can - not because of poison but because they feel better on my skin and hair. And occasionally I have bleach baths. That’s right. Bleach baths. The bleach is very diluted - half a cup to a full bath. These baths help with infection. And people are aghast. Sales people are pitching their bleach-alternatives. What a moneymaker.

A few years ago, I was washing my lunch dishes in the tearoom at work. A colleague I’ve known for years was staring at me and I asked them what was wrong. They told me that she cannot bear the thought of me using petroleum products, and they wished that I didn’t have to use them. I thanked them for their concern, explaining that I have tried a range of medically certified and natural based products and paraffin works the best for me. They went on, saying there must be something else. I explained to them that without the level of moisture paraffin provides, my skin would be very sore - cracked and prone to infections and my movement would be restricted. I later heard she couldn't bear to touch things after I had. We’ve not spoken much since.

Rosalind Robertson writes about the pesky, unqualified people who tell us to stop taking our prescribed meds. She gives some great advice: "If the person telling you to stop them isn’t your doctor, tell them to fuck off." I've been too polite all these years.

Medical shaming feels harder when it come from within your own community. And it concerns me when much of this medical shaming comes from people relatively new to Ichthyosis. Newish parents. New spouses, hoping to cure their partner, because love. Many have no scientific knowledge or qualifications - jumping on science cosmetic and sales jargon, making unfounded claims about products' success.

A year ago, I came into contact with a woman spruiking some ‘natural skincare products over medically prescribed ones. She stated that the products for treating Ichthyosis have not been formulated for a market yet. She claimed that petroleum was dirty, and banned in some countries. She also claimed it was cancer causing. I told her she was putting guilt and fear into the patients and parents who choose to use petroleum based products.

I was also contacted by a woman who told new parents their babies' Ichthyosis was caused by "unclean" Europeans who ate dirty meat and were involved in the sex industry in the 1500s-1700s. Talk about fear mongering
.
Recently I was accosted by a sales woman, "accidentally" trying to sell me an expensive bath product (an actual bath) when I said I've been so unwell with skin pain. She subtly left a link to the product on my Facebook status. I told her while I appreciate she cares, I felt she was being opportunistic. We aren't friends anymore.

There's nothing like opportunistic pyramid sellers providing false hope to people with skin conditions by spruiking their "miracle cures".

And these people doing the medical shaming aren't medically qualified. They might have been to The Beauty School, or a pyramid selling course. They might even dabble in making herbal creams for their partner's skin. But they haven't done 18 years at university to become a dermatologist. And so few of them actually live with the condition. Sadly, they're pitching their products by making people (mostly parents) feel bad about using prescribed products - scaring them with unfounded scientific claims. And laughably, they suggest products that cost thousands of dollars above basic treatments for underprivileged families.

I trust my dermatologists with my life. I’ve asked them several times what the long term impacts of using paraffin is. They told me it’s a very low risk of getting sick from it. I’ve been using this ointment since I was about 10 - so 24 years - and it works fine. It’s the best moisturiser I have. It saves my life.

I will never take an unknown trestment from an unknown person. Here's why.

About 10 years ago, a pharmacist - who I trust - recommended me a treatment for sore ears after a flight. It was an antihistamine. I hadn't used it before but I heard it helped. My skin peeled off my hands and feet. I couldn't walk. I couldn't touch things or use my hands. I was off work for a week. I cannot risk a reaction like this again. If this is the reaction I get from a tested, regulated product from a qualified specialist, I shudder to think what might happen from an untested, unregulated one.

Consider these things before you medical shame:

  • There are many forms and severities of ichthyosis.
  • Treatment types and treatment success varies between patients. A single product might work wonders for me, but make my friend with Ichthyosis very unwell.
  • No one knows their body and treatment like the patient.
  • With grief comes desperation. Some parents are so desperate to find treatment for their children that advice like I've mentioned scares them into thinking they aren't doing a good enough job using prescribed products.
  • Many of these recommended products are unaffordable, not covered on pharmaceutical or medical assistance schemes. (A couple of parents told me they can't afford the alternative treatments due to this.)
  • Please don't think that patients, especially adults, haven't tried many different treatments already, and aren't happy with the one they're using.
  • Just because skin "looks good" with a certain treatment doesn't mean it feels good. Ichthyosis is not solely a cosmetic condition.
  • While natural products might work well for some patients, they might not work well for others. It's fine to use natural products - but understand they might not work for everyone. Just as prescribed medical products might not work for everyone.
  • Some of the products being suggested haven't even been formulated for market yet.
  • Just like I don’t want to be told that my food is ‘dirty’, I don’t want to be told by someone other than a doctor (and a specialist at that) that the medical products I use are harming me.

Please consider the impact of providing "research" and "facts" about alternative treatment products, especially when the products we are using are keeping us alive. People tell me petroleum based ointments will kill me, but they don't consider that me not using them will do more damage while I'm alive. The risk of me dying through any means - including cancer - is low.

Just as you ask me to respect your religion, please respect my medical choices. This sort of advice, fear mongering and guilting is not compassionate. It is divisive and dangerous. It's bullying. I worry about the impact it will have on new parents looking for information. I won't tolerate medical shaming from a well meaning, yet unqualified and opportunistic stranger.

(Image description: flowers, herbs and pills. Text: 'Medicine shaming, plus my blog link.)

Did you like this post? Did it help you or make you think? Please consider buying me a drink!

07 November 2016

Offer Your Seat - the badge commuters wear to show they are willing to give up their seat on public transport.

Image: a collage photo. On the left is a woman wearing pink jacket, denim skirt and striped top, red face and curly hair, with an 11 year old boy, wearing red white and navy jacket and glasses. They are smiling, stranding outside Flinders St Station Melbourne. There are a few people in the background. The boy is holding a tray of badges. On the right is a closeup of the badges. They are round and blue with the text 'Need a seat? Ask me!'.


On Saturday morning, I met with 11 year old Anirudh Kathirvel for an interview. He hands out badges to commuters, for them to say they're willing to give up their train or tram seat to pregnant, elderly and disabled commuters. He's changing the world.

This initiative will make such a difference to people like me - I often ask for a seat on the train, and am sometimes ignored and occasionally refused. I am always polite - thanking them before and after they give me their seat, but sometimes it can be a hassle telling people why I need one. I had to meet Anirudh to chat with him, and so I arranged it with his Dad, Prit.

I did an interview with Anirudh which you can listen to here.




After reading an article about a man in London who made badges for disabled commuters to signal that they need a seat, Arnirudh wanted to do similar. Only, he placed the onus on people who are able and willing to give up their seats. I love this!

With his birthday money, Anirudh made hundreds of badges and started the Show You Care - Offer Your Seat initiative. 


He stands outside train stations handing out badges, talking to them about what they're for. He and his Dad also walk through each train carriage handing out badges.

When I met with him on the weekend, I did a quiet cheer when a woman recognised him from a radio interview, took a badge and then returned with her friend to get a badge and chat too. I asked them if I could take their photos for this post, and they obliged.



He's had requests for badges from around Australia, and even one in the UK.

In 2015, Arnirudh won Channel 10's Great Australian Spelling Bee.
He said he wants to use his fame for good. A quietly spoken boy, his eyes light up where he tells me about the success the badges have had. He said one woman told him she was hesitant about revealing her invisible disability on public transport, and how these badges have taken that pressure off her to disclose. 



I asked him whether he thinks people who don't give up their seats to those who need them. Ever the optimist, he said he doesn't think everyone is rude, but he thinks with people's heads are often buried on their phones or books and they just don't notice. 

Arnirudh already knows what he wants to do when he finishes school. "Study medicine - particularly neurology", he tells me. But he doesn't want to be a practicing doctor, rather, he wants to research how the brain works.

He's already stepping foot into university - attending regular public lectures at Melbourne University. He's excited to attend an upcoming lecture on disability - debating whether disabled people need to be accommodated or cured. I didn't ask him his side on the debate, but I'd say that the Show You Care badges suggest he wants disabled people to be accommodated.

He has a strong focus on social good - and it's clear from the Show You Care badge initiative he knows that a small thing can make a big difference. 



As Anirudh stood at Flinders Street Station offering badges, more people politely refused than stopped to chat to him. I asked his Dad, Prit, about whether the rejection gets him down. 

"It does, but it's a big lesson for him, and for me too", he told me. We talked about how these exchanges are lessons in resilience and patience. Prit also tells me that this is a reason he wants to get others on board to help - from other commuters being willing to hand out badges, to Public Transport Victoria and Metro to create and allow signage in trains, trams and train stations about the initiative.  Anirudh isn't selling a paid product, and he really wants to get the message across with posters and a team of people. 

The interview with Anirudh was so uplifting. I came away so happy we talked. As he said in the interview, he wants to "spread a helping culture" - and he's doing a great job at that, isn't he?

How can you help?

Visit Facebook to grab a badge or offer some sponsorship.
Email him to ask for a badge: offeryourseatandshowyoucare (at) gmail dot com
Listen to the interview.
Share this post!


02 November 2016

The death of 11 year old Bethany - bullied because of her appearance

Content warning this post contains details of bullying and suicide. Crisis line details are at the bottom of this post.

Bethany Thompson, an 11 year old girl from Ohio killed herself because bullies became too much for her. I read the news report and couldn't hold back the tears.

They bullied her because of her appearance - a crooked smile that was caused by the cancer treatment she had when she was three, and her curly hair.

On her last day of school, she and her friends wanted to put up posters for an anti bullying campaign. The posters read "buddies, not bullies", but the school wouldn't let them. 

She told her best friend she couldn't take being bullied anymore, and killed herself on 19 October. 

It breaks my heart to read this.

Look at her. A beautiful girl, hoping to change the way students treated their peers - hoping to change the world, and she was denied that empowerment. A girl who received life saving treatment as a toddler, which should never have affected how others perceived and treated her. Now she's gone, far, far too young.
(Photo from Columbus Dispatch)

Schools need to take this behaviour more seriously - to listen when kids report bullying, and to let kids lead anti bullying campaigns.

Parents (and peers) need to show kids what bullying can lead to, and step in to say that's not ok. They need to take responsibility and action for the way their children treat others. (Alison left a great comment on my Facebook post about this.) There was a great page in Courtney Westlake's book how parents are responding well to her blog about Brenna who has Ichthyosis, but this acceptance and awareness isn't being passed down to their kids through discussions about looking different. These discussions need to happen. - they need to trickle down to children.

I also think medical support groups need to provide children and adults with tools to build resilience and assertiveness, just as much as they provide medical advice. Perhaps a buddy system - pairing up children and adults with facial differences, could offer hope and peer support. I know that would have helped me.

Most of all, emotional intelligence - encompassing diversity, compassion and empathy needs to be taught as a standalone subject in schools. Kids need to see that Bethany and those of us who look different are worth getting to know, and that they need not fear or ridicule difference. I really love this resource - especially this:

"Strategy: Nobody should exclude another student from sitting next to him or her and/or from playing with him or her.

Why: It will hurt the feelings of that student. You have an opportunity to make a new friend." It's great to see the onus of stopping bullying being placed on the bullies, rather than those being bullied." 

This little girl was loved by her family and a group of friends but that wasn't enough for her to know she was worthy. 

I wish some of us adults with facial differences could have known Bethany and taken her under our wings and said "it gets better". That she could be her own hero.

This was me age nine. I wanted to die because of the way children bullied and excluded me because of my skin. Friends tell me they were bullied to the point of wanting to end their lives because of their visible differences when they were children too. Years later, it's still happening. It has to stop. It's too sad to comprehend.

Rest in peace beautiful, smart, kind Bethany. I'm sorry you were treated this way. My thoughts and love go to your family and friends. 

There is a gofundme to help Bethany's family with funeral expenses. Please drop them a few dollars if you can spare it, or share the link.

Support:

Lifeline: 131114, Kids Helpline: 1800551800, or the crisis line in your country.

Changing Faces and YP Face It are also good resources to help young people with facial differences.

I am not a doctor nor a psychologist, but I have lived experience in living with a facial difference. You can always reach out to me, too.

31 October 2016

The time I felt silenced by a person in power. (And why it's taken me two years to speak up.)

Over the weekend, a story came out about Jennifer Hawkins not speaking up about Donald Trump's derogatory comments towards her on stage at an event. I have to be honest and admit I haven't been following the US Presidential Election closely, other than the odd headline revealing what a dangerous man Donald Trump is.     

My editor put a call out in our Facebook writer's group, asking if anyone wanted to cover the Jennifer Hawkins and Donald Trump story. A colleague pitched an angle, and it inspired me to share my own experience of being silenced because I was afraid of someone in power. I sent off my experience to my editor, and Jenna Price wrote this article for Daily Life with a few of my quotes.
 
Jenna Price article screen shot

I think it might be pretty common for women to experience harassment or uncomfortable comments from a manager or senior member in the organisation and not speak up because of the ramifications to their career. It's happened to me, a number of times. I wanted to share the whole story with you, so here it is.     

I put so much of myself into my writing, and so readers - and editors - come to know me very well. Perhaps they feel my candid writing about my disability gives them permission to enquire, or joke about it, more than a stranger.     

I was at a conference, hanging out with fellow writers. I always love seeing my writing friends in person - they just get the industry, and we talk so much online it's nice to see them in real life. It had been quite a successful time for me - winning several writing awards and being published across many networks.    

One editor, who, along with their team, gave me such a great opportunity, made a few comments about my skin.     

"I wanted to slap you on the bum but I didn't know if it would hurt you", they said as they greeted me while I checked into the hotel. I laughed it off, air kissing them back.  Did I hear right?

I dropped my bags in my room, and then headed down to the hotel bar. A number of us chatted over cocktails and snacks, talking a mile a minute. It was truly great to see everyone at this annual conference.     

An hour, one cocktail and lots of selfies later, I got up to leave, saying I wanted to have a shower and get some rest before that evening's event. "Don't leave your skin in the shower", my editor laughed.     
I waved everyone off, cheeks burning. When I got to my room, I told my friend who was sharing with me what was said. My roommate agreed it was strange, but we agreed it was just a joke, not meant with malice.    

It was such a personal, odd thing to say. My editor hadn't commented on anyone else's personal attributes as they had mine, not that my writer friends had any obvious disabilities that I knew of.

A few months earlier, I had written a long post on Facebook (later inserted into a blog) about how my fears of staying in shared accommodation while traveling were conquered when I was forced to shower in a hostel. Fellow travelers had to see me first thing in the morning - face unwashed, dry skin - and I came to be comfortable with that. Perhaps my editor had read it? Of course, I was - and still am - conscious of leaving my skin behind, so my editor's comment made be burn up in front of my colleagues and friends. What if I did gross out my roommate by leaving skin behind in the shower? (I later vowed not to apologise about my skin.)    

We glammed up for the evening. My friend and I were five minutes fashionably late - she looked so fabulous by the time she put on her makeup and curled her hair.  The lift to the bar was full - and my editor was in there. We squeezed in. My editor spoke up: "what took you so long ladies? Did Carly spend ages getting the skin on her face ready?", they asked.     

I was mortified, but quick. I said  "No, Liz* spent ages putting her makeup on. I don't need makeup."    
The lift was silent. I got no apology. This third time frustrated me.     

My writer friends drank and chatted the night away. Of course my editor's comments were not enough to make me worry about my appearance, but I did worry I was giving so much about myself in my writing that it made readers comfortable to say really awkward things.    

When we returned to our hotel room after the event, my roommate and I discussed what happened in the lift, at the bar and at reception. We couldn't quite believe it. (When I called her about mentioning her in this article, two years on, she still agreed it was weird.) I said those things have stuck with me for years and I didn't want to speak up. I worried about my career.     

While perhaps my editor was so familiar with my work, and sees me comfortably making jokes about my skin, they felt it gave them  permission to make a joke too.     

But here's the thing. They were in power of me - at the time I had a writing contract with that publication. It was good money and I didn't want to jeopardise the contract or my reputation with my editor and their team.     

But as an employee and contractor with a disability, insensitive or discriminatory comments about my disability from my superiors can be difficult to manage. Who do I tell when the person making them is the boss? What if, by being assertive and saying these comments make me feel uncomfortable, I am breaking a code of conduct.     

Perhaps this is why Jennifer Hawkins didn't speak up about Donald Trump's belittling comments. He publicly made comments about lying about her intelligence, and suggested Jennifer "came and came and came". She avoided his kiss on the lips by turning her head.    

On the weekend. Jennifer Hawkins said "I've said it before, he has treated me with respect, and so has his family. Beyond that, what else am I going to comment on," she said. She said she didn't want to get involved in making a political comment."    

He has given her many opportunities as Miss Universe. At one stage he was her boss. My editor gave me many opportunities too. But it's comments made from people in power who stop us speaking up. And it shouldn't.     

These sorts of comments because of familiarity would never happen in my regular day job as I don't "put myself out there" as much as in my writing. But how does that excuse the comments from my editor? It was really easy to blame myself because as online writers, we are constantly on the receiving end of justifications for negative and abusive comments. And perhaps Jennifer Hawkins (and the public) felt like she should have just laughed Donald Trump off because she's in an industry that focuses on physical beauty. It still doesn't make it right, though.     

I've never spoken to anyone other than my hotel roommate about how I felt when my editor made comments about my skin. I excused them because I felt I invited them by making readers comfortable enough to feel they can have a joke with me. Just like readers ask how sore I am, because I wrote about it. But I never asked for it. My editor held the payment and writing opportunities over me - but they also made me feel more self conscious than I needed to. All for a byline.     

Writing this piece felt cathartic. I might be risking my reputation in the media industry by speaking out (just as I've been told that I might be overreacting or too sensitive when I've spoken up about bullying in my day job), but I don't want my silence to be complicit anymore.   

(*Name has been changed.) Did you like this post? Did it help you or make you think? Please consider buying me a drink!

24 October 2016

Launching our podcast - Refreshments Provided



Jason and I launched our podcast four weeks ago and I haven't blogged about it yet. Sorry. I was overseas. Anyway, here it is! It's called Refreshements Provided and it's an irreverent chat, mostly based on food, but we talk about what we've been watching, reading and doing too.

You can listen for free on iTunes and Soundcloud.

Jason and I are huge podcast fans, and have been talking about starting a podcast of our own for about a year now. We've done quite a bit of planning, and it's come together well. It's been a lot of fun   recording each episode. Really it's just a recording of two friends having a chat. It's really nice to talk about light hearted stuff rather than activism. I giggle a lot. When we are more practiced, we will invite some guests.

Follow us on Facebook, Twitter and Instagram. Read our show notes here.

If you have listened to it, please leave us a review on iTunes. And if you have any ideas for topics or guests, let us know on the socials.

We hope you enjoy listening to the podcast as much as we've enjoyed making it.

Big thanks to Jason for doing all of the grunt work while I've been overseas.

19 October 2016

The murder of disabled children is often excused.

Warning: This post contains content about violence, murder and suicide related to disability. 

I've been struggling reading about the alleged murder-suicide that happened in Sydney earlier this week.

Two parents, their children and their dog were found dead in their home. Police report an elaborate gas system was deliberately set up in the home. Media states the children had profound disabilities and their mother struggled to cope. Neighbours said they were good, loving parents.   

(It has also been reported that the mother wanted to move back to her homeland of Colombia " to relieve the crushing pressure of raising two severely autistic children.")  

That's all we know for now. I hope it was an accident.

But police have confirmed the worst. And the focus on the children's disability in reports suggest their disability might have been a motive. While we don't know all the facts the media has a lot to answer for in its reporting and portrayal of people with disabilities.   

The commenters sympathise with the reports of the alleged murder-suicide. Comments like: "It's understandable." "Walk a mile in their shoes." "We shouldn't judge." "It's so hard raising children with special needs." "As a parent pf children on the spectrum, I relate." And "It was an act of love." (You can read some actual comments here)  

I cant imagine the pain felt by the family's loved ones.

It's a tragedy too awful  to comprehend. The wider disability community is hurting too. This needs to be talked about. And I have tried to write this as respectfully as possible.      If this case does relate to the stress disability has on a family, then...  

The level of sympathy towards parents who kill their disabled children is much different to the level of sympathy towards other parents who have killed non disabled children. (Briannon Lee also writes about the level of focus on the parents in these stories, as opposed to the children. Read her excellent piece from an autism/parent perspective here.)  

When Robert Farquarson drove his car into a Victorian lake on Fathers Day 2005, killing his three children, media described the murder as "incomprehensible" and a "cowardly act".     But when a parent allegedly murders their disabled child, the public (and judges, jurors) sympathises, emphathises even. Because it's difficult raising a child with a disability. This is ableism. It is as though a disabled life is worth less than a non disabled one. 

Countless disabled people are impacted by violence and murder, and the whole disability community is affected by how these cases are judged and the way the media reports on them. These incidents aren't infrequent. (You can read about some of the disabled people who have been killed in Australia at the White Flower Memorial page. The White Flower Memorial serves to remember those with disabilities who have died in institutional care, in detention and in domestic care situations.)  


I've not been a parent (nor a parent of a disabled child). I haven't experienced the strain and the worries. I don't have autism. But I've been a disabled child. I've seen my parents struggle. Ive experienced discrimination, exclusion, financial hardship, pain and ableism. I've also been told that I shouldn't have been born, and that I'm a burden. Many of my disabled friends have heard similar things about them too.    


Tragedies like Monday's shake the disability community. It's incredibly sad - I'm saddened that the family is dead and I'm sad a lack of support may have driven a parent to this. But I'm sadder at the commenters justifying that killing disabled people is understandable because the children are disabled. This does nothing for disabled people's self worth. Imagine what it's like to hear news reports about murders of people like you, or to read comments that are (often unintentionally) ableist, saying they understand why a parent may have murdered their disabled child? Many disabled people are struggling with the news right now, especially with the commentary excusing it.  

When a parent kills their disabled child, it's believed to be a mercy killing. Hell, an anonymous mother has already penned a piece for Mamamia saying she and her husband have discussed killing their disabled children.   

In 2014, after Geoff Hunt murdered his wife and children and then killed himself near Holbook, media reports painted him as a victim. It was a burdensome task looking after his wife who acquired a brain injury a few years prior. It seemed understandable, why he murdered his wife and kids.  

At the time, Stella Young wrote:     
"When we hear of a crime like this, we quite rightly recoil in horror. And yet, when we hear that a murdered wife is also a woman with a disability, we can find ourselves a little bit less horrified. As though her status as a disabled woman gives us a little more empathy towards the perpetrator of violence. It's victim blaming at its very worst."  

Again, if this case does relate to the stress of disability on a family, then...

More respite and emotional support needs to be provided to parents and carers so it never comes to this. Stigma around disability needs to be erased. Perhaps a white flag system needs to be in place - when someone is struggling, they can safely take their children to care. I don't know the answers, and I can't bear to think why this happened, nor read the comments.  

We all need to play a part in ensuring people with disabilities and their families are included and supported in the community, and can ask for and receive adequate help. But murder is never justified because a child or adult is disabled and it becomes too much for someone to cope with.   

My thoughts are with the family and everyone who loved them.

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