28 November 2016
27 November 2016
"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."
24 November 2016
21 November 2016
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.
"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."
"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."
"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."
"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."
"I won't describe what I look like. Whatever you're thinking is probably worse."
"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."
- a letter to little me
- dear parents of kids with rare diseases, and
- how to prepare children for meeting someone with a visible difference.
14 November 2016
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.
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.
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.
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?
Listen to the interview.
Share this post!
02 November 2016
"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."