Because I’m about changing the narrative of disability and appearance diversity in mainstream media, and also a freelance writer and need to pay the bills, I wrote Adam and my wedding story for New Idea I wrote it in third person, and now New Idea claims me as their “favourite appearance activist”. (Who’s their second favourite?) I’m two pages behind Osher Gunsberg’s wedding spread, so I guess a spot on commercial radio is next for me.
The paper edition is out in Australia this week, or you can read a preview here.
I chose New Idea because I already had a relationship with them (here and here), and it’s also an audience I don’t often reach. It changes the way society sees people living with Ichthyosis, and also the way we see ourselves. I was very firm with how I wanted to be represented, and made several edits.
Last week a friend who lives with Ichthyosis shared another of her beautiful wedding photos on Facebook. She got married in October. I’ve loved seeing her photos and video, and of course I clicked like. She has only shared a few photos, unlike me who’s shared around 865! I want to see more photos – I loved her flowers and her dress and her cute jacket that was embroidered with her new surname! It was all so pretty! Seriously how beautiful is her wedding video?!
Early the next morning, my friend sent me a screen shot of an awful comment she received on the photo – from another woman with Ichthyosis. The comment said “sick to death of seeing this. You were married six months ago. Are we going to have this all year [?]. Jesus, grow up.” Then she blocked my friend.
Gobsmacked. My friend’s husband sent this woman a message, questioning this hate filled message very politely, telling her what the wedding represents – a dream they’d never thought come true. The woman with Ichthyosis told him my friend isn’t dying, she on,us has a skin disorder, FFS. There was swearing and more bitterness. Horrible. It must be tiring being that miserable. My friend laughed it off, resilient as fuck.
I was so sad for her.
This behaviour is lateral violence. It’s internalised ableism. I’ve seen it happen a lot between people with similar (or different) disabilities. I’ve been on the receiving end of it from people,with Ichthyosis.
It’s so important for people with Ichthyosis – like my friend and I – to share these life milestones. And even the mundane. It shows the world that despite low expectations, we can achieve and be loved. It gives hope for future generations living with the condition.
Many people with Ichthyosis go through our lives being told we are undesirable and unlovable. We’re also told that if we put our strange, unsightly faces and bodies* out there, especially on social media or in mainstream media, we are attention seekers. We can’t love ourselves when so many others don’t love us. We are conditioned to hide away, because the media rarely shows people like us in a non sensational, non exploitative way.
And this is why I told my story to New Idea. On my own terms. To show others who feel like they need to hide away, or told to take those photos down, or doubted for being happy with their unique beauty that it’s ok to be proud of the way they look, and to celebrate a massive milestone like getting married or having a baby We are able to do this on our own terms – through social media, and magazines like New Idea, if we choose. We can change the narratives or disability, appearance diversity and Ichthyosis so the world won’t get tired or frightened of seeing us,
Thanks for having me write for you again, New Idea. It’s been a great experience.
For advice on what to do when the media asks you to share your story about your disability, facial difference or Ichthyosis, click here.
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