Ichthyosis Awareness Month 2016 - we must move past raising awareness.

 

It's May and that means it's Ichthyosis Awareness Month. This isn't my usual chipper post. This is me being cynical.

From the Royal Children's Hospital website:

"Ichthyosis means 'fish scale' and is the name of a group of genetic skin diseases that cause dry, scaly, thickened skin. The condition is usually present at birth or in childhood. It is not caused by infection and is not contagious (i.e. it cannot be caught by others). The life span of someone with ichthyosis is normal. There is no known cure for ichthyosis, but there are treatments available which can help to improve the skin's condition.

Our skin has many important functions including physical protection, temperature regulation and providing a barrier to water and infection. Skin cells are the building blocks of skin and are made up of keratin.

In normal skin, new skin cells are formed in the deepest layer at the same time as dead cells are shed from the top layer of the skin. In ichthyosis, either the dead cells are shed too slowly, causing a build up of the top dry layer; or the production of new cells from the lower layers is too slow. The skin barrier is abnormal and allows too much water to be lost from the skin."

As well as the medical challenges, it's socially challenging because of other people's ignorance and fear about the condition. But you know all that. I've been banging on for it for almost six and a half years.

I'm not running Ichthyosis Awareness Month on my blog each day (twice a day) in May like I've done for the past three years. Cue sighs and protests, because I know how popular it's been. I've given the Ichthyosis Awareness Month blog project a lot of thought. And I simply can't do it in 2016 with all that has happened since last May. I'm still trying to get on top of my own Ichthyosis, which hasn't been great for more than a year now. And so I must rest.

One main reason is the sheer effort and time it takes. Editing, publishing and promoting others' stories is huge work, especially when many aren't natural writers . Last year I wrote a couple of my own posts, plus edited, published and promoted more than 40 posts from others affected by Ichthyosis (as a patient or a parent). I paid others to help edit some of the guest posts. And I tried to get as many people promoting the posts - which is tricky. Even people who submitted stories didn't promote them.That was on top of my day job, the early stages of wedding planning, organising the Australian Ichthyosis meet, and freelance writing. It broke me.

This year I am only running a couple of posts a week posts during May. There is one guest post coming that I know of, and I have a few topics lined up - more so opinion pieces than my personal story. It's such a relief not to be overwhelmed with a full calendar of guest posts. I do appreciate everyone who has submitted stories the past three years, but I can't manage a month's worth this year. I hope you understand. I'm happy to take a couple more guest posts - if you would like to submit a post, you can read the guidelines here, and I'll consider publishing it.

Here's the posts from the 2013, 2014 and 2015 Ichthyosis Awareness Month blog project. Please go back and read and share them - they empowered and educated so many. Thank you.

Another reason I'm not doing a full month of posts is because I strongly believe that we need to move past raising awareness. We need acceptance and inclusion. I know the rest of this post won't make me popular, but I back myself. I wrote a lot about the need to move past awareness last International Day of People with Disability. Me and others still experience exclusion, rudeness, stares and discrimination on a daily basis - despite awareness raising. We are expected to be teachable moments during every difficult encounter - even by people in the Ichthyosis community. I'm bloody tired.

Despite awareness raising, there's little acceptance. While I am proud I've helped to change perceptions of people with Ichthyosis (and other facial differences and disabilities), I'm also jaded. In recent months, I've received lots of messages from readers who have told me I've helped them in some way, but I still feel the message isn't reaching the people who need to hear it. I think a few others with Ichthyosis feel this way too.

Despite myself and hundreds of others raising awareness, there is still hate speech on Reddit, and stolen photos of people with Ichthyosis on Youtube and Facebook - dripping with ridicule and exploitation.

We still have to explain why we look like this, tell people we aren't contagious, and receive stares, comments and ridicule regularly. One friend, a parent of a little boy with Ichthyosis, experienced swarms of concerned people at an event asking why they let their child get so sunburnt, even calling the police. Another friend endured a nurse calling child protection because they thought she wasn't looking after her child properly. Both these friends continually raise awareness.

Raising awareness has meant parents share well meaning yet undignified photos and videos of their children with Ichthyosis. The content should be kept private. This past year I've seen some pretty horrific images and videos on Facebook including nudity, piles of skin and a screaming child in the bath. They've made me cry. This stuff belongs in the home, never to be photographed, and never on social media so others can say they've learnt something new.

I know it's with the best intentions, I know. But private groups of 700 people or more aren't private. And a public Facebook profile certainly isn't. I've been shouted down for speaking up for privacy and dignity. I wonder whether those adults without Ichthyosis doing the sharing would like their images shared in this way, in the name of awareness raising? It hurts.

Despite raising awareness, there are still uninformed, sensationalist news articles stating that Ichthyosis is caused by marriage between relatives.

Despite raising awareness, adults with Ichthyosis find it hard to get employment - because employers are scared of how their skin looks, and they underestimate abilities.

Even though those close to us are aware of our conditions, our skin can still be an inconvenience to them. They're not comfortable with our skin getting on the floor or on their clothes, and voice it. These criticisms sting, even when they're said about someone else.

Our stories are often told by others, sensationalist and exploitative as mentioned above. We need better inclusion in the media. We need inclusion across the board to prove our worth. The media culture need to stop making money from portraying our lives as tragedies.

And raising awareness can be an echo chamber. The majority of people raising awareness are those with the condition, or our family members. The shit that happens to us constantly makes us tired, and so sometimes, even we don't want to raise more awareness (I'm included in feeling like this!). I'm not sure if it's awareness fatigue, apathy or the inability to handle another issue that isn't ours, but even those with the condition don't speak up when members of the Ichthyosis community face injustice.

We need to move past raising awareness. People know we're here. We leave trails of skin like breadcrumbs. We need to get to acceptance - acceptance of our condition by others, and by ourselves.

This May, I hope for more than awareness raising and tokenism.

I hope individuals and companies take committed action to tangibly improve the lives of people with Ichthyosis.

I believe Ichthyosis charities especially need to focus on supporting the every day, rather than cures - such as offering advice about education support, helping with addressing online and offline bullying, and coaching for job seeking.

I hope more of us can meet in real life. The bonds formed are amazing.

I hope more parents can listen to adults with Ichthyosis and really respect and value our experience and advice (and so I'm thankful for the many who already do).

I hope the new generation of children with Ichthyosis learn to love themselves, speak out about their experiences, and not feel the need to conform to a beauty ideal. Above all, I hope the ableism myself and so many others have endured stops at us, and these beautiful kids never have to experience it - because society is more aware and accepting.

And on a personal note, I hope the pain of my Ichthyosis subsides a little so I don't spend so much time in bed.

Raising awareness about Ichthyosis is a start. But it's up to those without their condition to remove their prejudices and judgements about our appearence and medical needs so they can accept and include us. Over to you.