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.)
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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.
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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."
31 October 2016
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.
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
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
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.
30 September 2016
19 September 2016
In July I was alerted to some children in Wajir, Kenya who are suffering terribly from Ichthyosis. I rarely use the term 'suffering' but these children really are. My heart breaks for them.
The children haven't received adequate medical treatment and are hidden from their community. I've been told that children with disabilities are killed or left to suffer. Their families and communities believe it's witchcraft that caused Ichthyosis, and bear great shame in having a child that looks different.
I was told differing information about the children – I don’t know how many children are affected by Ichthyosis, and when trying to get in touch with one boy’s immediate family (Baby Abashir, below), two men initially claimed to be his uncle, and later told me they are just part of the campaign to save these children.
An aid worker contacted me on Twitter and then by email. She said the children have a dermatologist and creams. But she couldn’t give me exact information about how I could help – where to send creams to, how to get information about care plans and emotional support to them.
And the Foundation for Skin and Related Types (FIRST) tweeted at this aid worker offering only a teleconference between the Kenyan dermatologist and FIRST, but the infrastructure in the town of Wajir doesn’t allow this.
There has been a social media campaign (#savewajirkids) which has raised a lot of awareness that these kids exist and need help. But sadly, a lot of it is clicktivism - sharing tweets and expressing sadness, without offering tangible help.
I worry about the speculation created in the #savewajirkids social media hashtag. A lot of misinformation has been spread - including how Ichthyosis might have been caused by nuclear waste. And there are tweets expressing horror about the image of these kids. I don't agree with these kids' photos being used for speculation if there are no facts to back them up. Yes, awareness needs to be raised, but the kids need their dignity, respect and tangible help. A tweet will raise awareness, but won't help these kids. A treatment plan and ongoing support will.
And I didn't see many people in the Ichthyosis community talk about these kids. (I wanted to help them like I helped Baby Julius - but I could not do it alone.)
The same week I was alerted to the Wajir children via the hashtag, I was contacted by an ABC journalist based in Kenya, who is committed to telling the kids' story sensitively - to educate the community and to reduce stigma. He wanted to cover this story, but I am not sure whether it’s been published yet. In a lengthy email, I told him about my treatment and the support I receive, and what might help these children. I only hope he has passed the information onto the children’s families and dermatologist, even if the article has not been written.
So with the futility of contacting the aid worker, the men claiming to be family, a brief response from FIRST, and the cessation of the journalist's emails, I don’t know how else to help these children, which is why I am writing this blog post.
I felt a terrible sense of privilege explaining my situation to the journalist, because I know just how little these children have - in terms of medical aid and understanding. And I’m reminded of the life-lottery – I believe my life would have been a lot different if I was born elsewhere. There would be a different healthcare access, and also different attitudes towards appearance diversity and disability.
In reading about the Wajir kids and answering the journalist’s questions, I've realised how lucky I have it. How lucky so many of us with Ichthyosis who are born or adopted into the first world are. While I have access to medical treatments such as ointments and antibiotics, sadly these children do not. Their skin has deteriorated so much. And I've never faced this type of stigma and discrimination faced in Africa. (I know others in Asia who have experienced similar stigma.)
I don't know whether my advice to the journalist was useful because there's still so much more to be done in terms of rigorous treatment to get the kids' skin to a manageable state before commencing routine ongoing treatment, and of course, encouraging acceptance and inclusion in these communities. Additionally, good health is helped along with good nutrition, and families might simply not have enough money and access to nutritious food to ensure their children with Ichthyosis are eating well. I know how painful the condition is and I can't imagine the pain these kids ensure when it's gone untreated for so long. I am very sad for them.
In 2014, Jennifer See wrote about Ichthyosis in Ghana on her blog Confetti Skin. Jennifer wrote:
"The youngest child is Amotalé. Michelle told me that while Amotalé is 10 years old, she is only the size of a healthy 4-year-old. Her name means, "Has it gotten to this?
She has scurvy from vitamin C deficiency and walks with a stick because her legs won’t straighten around the thick scales on her joints. She has severe malnutrition and her belly is distended. Her poor head is so thick with scale that it is like a cap. Michelle told me that two days ago, when she gave Amotalé a bath and removed some of the scale from her head, she saw the skin underneath was leaking pus and was infected. A separate Facebook post from the same day even says there were maggots underneath her scalp. Michelle said that Amotalé hated the bath, but once she was done with lotions, the little girl started dancing."
There are others living with Ichthyosis in similar conditions across the world (Nepal and India). The stigma and lack of knowledge about the condition and access to treatment is very similar to what the children in Africa experience.
I have an online friend with Ichthyosis who lives in Kenya. Esther, in her 30s, wrote to me outlining some of the experiences she has had, as well as some advice. She has just got married! I wanted to get a sense of what it’s like to live with such a rare, stigmatising condition there, and she has given me so much insight. Esther has met with Baby Abashir and his family to provide them with advice and support. (I have edited her words a little for punctuation and grammar.)
"I have lived with the EHK Ichthyosis all my life. It was very difficult for doctors here to understand it know what was wrong with my skin so it was such a hard time for my parents. In those young years nobody gave them the right diagnosis so I was grouped with all others who have the common skin diseases. I saw my dermatologists with no success.
I am happy with my skin, it had improved so much I no longer itch or get blisters which were so bad in my years. I am now on creams that a doctor who is good on alternative medicines. I also exfoliate my skin which makes it smooth. I am also on whole grain diets which has helped my skin.
What baby Abashir us going through with his family is what we went [through too]. I have faced isolation, stigma and discrimination in different aspects of my life since not many know or understand what Ichthyosis is. And doctors too, I have faced difficulties with them too when I try to explain to them.
I do work am self employed in informal sector - I sell handbags which I love. That's how I manage. I can say that am fortunate my family loves and accepts me, so I am confident.
But I am sad to say kids with Ichthyosis are hidden, not educated and even are abandoned by their families. The culture here contributes to this because they believe it's witchcraft.
So children and adults in the most remote parts of Kenya continue to suffer in silence.
My dream and hope is to reach them and offer them hope and support so a fundraiser us great so that the money we get [can] help baby Abshir and other in Wajir. This part of Kenya is most affected with my children suffering. It’s a very hot place so heat intolerance is so great.
I don't know what we can do any suggestion in this is great so basically we would need help with creams, eyedrops, and even monetary so we can be able to achieve the goal of reaching out to this other kids. Mostly I need to travel there to create awareness in this community and connect and give them moral support."
The journalist told me that when the Wajir children’s parents were told Ichthyosis is a genetic condition, they blamed themselves, believing they caused it.
Oh my heart.
Parents, please don't blame yourself. Many parents don't know they carry the gene until their child is born with Ichthyosis, though it can be screened for during pregnancy. (My parents didn't know, and they've since been genetically tested and both carry the gene. It was passed to me recessively.)
The children have been hidden away from their communities – because disabilities carry a lot of stigma and shame in third world countries. Again, tears.
These kids need to be shown love and compassion and that they're a valuable part of the community. It starts at home and with medical staff. Communities need to be made aware of disabilities - that they aren't caused by witchcraft and that people with disabilities aren't to be hidden away and ashamed about.
The stigma is as painful as the skin condition.
In a paper titled Reducing Stigma and Discrimination to Improve Child Health and Survival in Low- and Middle-Income Countries: Promising Approaches and Implications for Future Research (Nayar et al, Journal of Health Communication, September 2014), academics discuss the impacts of stigma on the development of children with chronic illnesses and disabilities.
"The manifestations of stigma can lead to a number of stigma outcomes, such as delayed treatment seeking or poor medication adherence, that ultimately lead to longer term stigma impacts, including poorer quality of life and increased morbidity and mortality. For children under 5 years of age, stigma and discrimination experienced by parents—for example, as a result of having a stigmatized disease such as HIV or belonging to a stigmatized group such as the scheduled caste in India—can impede access to or uptake of available health care services, leading to poor health outcomes for children."
The paper suggests stigma and discrimination reduction methods should be implemented into infant and child health programs:
"Increased investment in stigma and discrimination reduction interventions and program evaluations is also needed to overcome the evidence gap regarding stigma and discrimination reduction interventions. Program implementers should prioritize regular inclusion of measures that assess stigma and discrimination in evaluations of all interventions targeting neonatal and child health and healthy early childhood development, including interventions addressing integrated care of mother and child. The field would also benefit from improved, more detailed reporting about the content of community engagement, communication and counseling…"
I am concerned that the stigma around these children has prevented them from receiving adequate education opportunities, thus preventing them from entering the workplace, and perpetuating a cycle of poverty. Esther’s story is proof that the stigma can be broken.
Another academic paper I read (The Stigmatization of Disabilities in Africa and the Developmental Effects - Digital Collection, 2013) states:
"It is widely believed in areas like Africa where stigmatization creates negative connotations that the employment of persons with disabilities would cause a less productive workplace, due to special needs and slower production rates." The paper provides examples of terrible human rights abuses, but also provides suggestions of the benefits of inclusive education, as well as inclusive advocacy efforts to help shift attitudes of governments, policy makers and financial institutions. "One example of how this can be accomplished is in the case of AbleChildAfrica http://www.ablechildafrica.org/, where children have a say in everything they do. The Board meets with the communities two to three times per year and consults with their local partners regularly. These partners work with children everyday so they see what works and what does not in terms of program implementation. The partner organizations also work with the families of the disabled children in order to move away from the idea of just leaving the child to be taken care of by someone else and not included."
Ethan, who is 10, wrote some advice for these children. He wants these children to see they're not alone. I love his wisdom.
"Having different skin is nothing to be ashamed about. I have Ichthyosis just like you😀. Even though you have different skin you should know that you are the same as anyone else on the inside. I know it must be hard to stay cool in the hot weather in Kenya. We're all the same, if I had went with my mom she would have treated me as well as she could in that environment for even a week or two. It can be hard even here in North Carolina where it's cool some of the time. Even now my skin has been through a lot more than most people. Even with lotion and a cooling vest I still can get really hot and uncomfortable here. I can only imagine how much more challenging it could be with so few resources.
My mother told me that you are having a lot of trouble getting the supplies you need. I was glad to see you were more comfortable with the lotions that you got in Nairobi."
Here's a photo of Ethan and his Mum Erin. Erin is incredibly proud of her son.
So here’s what I’d like the parents of the Wajir kids, and the wider community, to know about Ichthyosis. It seems so simplistic, with the complexities of the treatment and perception of disabilities in the third world, but it's all I can do.
- Ichthyosis is a genetic condition.
- It's genetic and not contagious.
- There are many types of Ichthyosis with varying symptoms, appearances and treatments.
- Regular showers and baths in clean warm water, and applying ointments such as Vaseline can help.
- Adequate nutrition helps - fresh fruit and vegetables, meat, dairy, plenty of water.
- Once the children's skin is managed, they should be encouraged to get an education, form relationships and get jobs.
- You are not alone.
Here are some other resources from medical experts about treatment:
From the Royal Children's Hospital, Melbourne,
From Dermnet, New Zealand.
I can only hope that now these children in Wajir have been "found" and received some media attention, an education program can be provided to their parents, medical staff and the wider community. As well as reducing stigma, they could get the medical treatment they need, as well as being included and valued members of their community. I also hope their doctors can look to adults and young people with ichthyosis to see how we’ve managed, and also to show these children and their families that a good life is possible. While it has been hard for me to connect with this community, I hope that this blog reaches them somehow, and they can see they aren’t alone.
If you live in Africa and want to tell your story of life with Ichthyosis, you are most welcome to leave a comment below.
This is the second post in my series "Ichthyosis in developing countries". You can read the post about Ichthyosis in India here.