Vicarious trauma – I am you, and you will be me. My performance for the Melbourne Writers Festival

I finished writing this today, and performed it on stage at the Melbourne Writers Festival today. Thank you for having me MWF, it’s always a pleasure.

The words have been coming for a while. I’m constantly horrified at the level of oversharing and ableism that I see among some parents. All of these things that I’ve written about, they’ve happened. They’re actual interactions I’ve had recently. The urge to raise awareness should never be greater than the urge to maintain dignity of a disabled adult or child.

I teared up, cried just a little when I read it this afternoon. My wonderful friend and colleague sitting next to me hugged me afterward, and my publisher said some lovely words too. 

I want to shoutout to the amazing parent friends I do have in the ichthyosis community, and to my incredible parents too.

Content note for ableism. If you need to, contact Lifeline on 131114, Kids Helpline on 1800 55 1800 or a support service in your country. 

Image: woman with red face and short dark curly hair sitting on a dark stage. She’s holding an iPad and speaking. She’s wearing a green floral dress and boots. One foot is on top of the other. Pic by Jess Healy Walton.

There is vicarious trauma in reading about how some people raise awareness about and view ichthyosis in mainstream and social media. It compounds when I read things like what I’m about to tell you on top of living with the condition. I swing between anger and exasperation and pain.

Dear little baby,
I found you because your video has gone viral
You were in the bath.
Covered by a face washer.
But your skin was tight and painful and was being sloughed.
And your mother was telling tens of thousands of strangers on the internet how hard it is to care for you, and inviting questions about this intimate process to be asked.
All in the name of awareness raising.
The video had been shared a horrifying amount of times,
Facebook blurred out the video, your precious face, labeling it graphic content.
I wrote to your mother, telling her I too have ichthyosis,
And maybe there’s some aspects of your life that could be kept private.
She blocked me.
You have a whole community of people who know what it’s like to live with ichthyosis.
The 30,000 people have come to gawk and pray and ask how you can be healed and tell you that you look like an alien will never be as valuable as the community of adults living with ichthyosis.

I was you.
And you will be me.

Dear little baby
Someone sent me an article about you.
You were smiling
Gummy, happy.
Above your little face was a content warning from the news outlet.
This article contains graphic images.
I complained to the news outlet and the Australian press council.
And your mother deleted me from Facebook.

I was you.
And you will be me.

Dear little baby
Your mother was complaining how tiresome it is to take care of your skin in an online support group.
That’s how I came to find you.
Reading that post was not only upsetting for your daughter but for everyone with ichthyosis in that group.
Friends of mine were in tears.
Many of us feel we are burdens, feel apologetic about our skin.
So to see a mother complain about how tired they are of caring for their child’s skin – that’s tough.
What happens when you are old enough to join that so called ichthyosis support group and see what your mother said about you?

I was you.
And you will be me.

Dear little girl
I saw you again when dozens of people tagged me on Instagram.
You were adorable on a video, singing and laughing.
But your image was used to sell tickets to a Real Housewife’s show.
And the gawkers and ridiculers were in force
They said you were an inspiration and putting others lives into perspective.
You were simply being yourself.
When I intervened, politely telling off the ridiculers, the Real Housewife’s people told me to keep it nice,
As though I had no right to defend someone with Ichthyosis.
What would I know?

I was you.
And you will be me.

Dear young adult,
Your mum told me your life is awful, that it’s ruined, and that she has no hope for you.
I told her I was you once, and listed all of the amazing things other adults with ichthyosis are working on.
Still, she had no hope. It will never get better, she told me.
Your mum didn’t understand why I was so upset.
I called my mum and cried.
That I am here, leading an ordinary and successful life, even with the pain and social difficulties of Ichthyosis, means it does get better.
Your mum couldn’t see this at all.

I was that baby.
I was that little girl.
I am that adult.
And I’m so very thankful my Mum and Dad always believed in me and let me choose when and how I tell my story.

Dear parent,
Respect and self belief starts at home. You are your child’s biggest advocate.

If you don’t respect your child enough not to keep some things private from the media,
Or if you talk about them with disgust or saying they’re a burden,
Then how will your child ever believe in themselves?
Talking about how burdensome your child is, is harmful to everyone.

When you say those things about your child, you’re saying them to all of us.

It takes years to shake the shame.
Stop throwing us all under the bus with your ableism and need to overshare.
Stop damaging the hard work myself and so many others have done to change the perceptions of ichthyosis.
If the only exposure people have to ichthyosis is these articles with content warnings, and intimate moments shared on social media, of course fear and pity will be perpetuated – in homes, in playgrounds, in workplaces, in the streets.

Ableism starts with you. And it can stop with you, too.

If you’re taking part in exploitative media, you’re part of the problem.

Dear little ones with ichthyosis,
I’m sorry your story has been shared this way,
Without your permission.

You don’t exist for clickbait.

When you are old enough to google your name, and ichthyosis, I hope you will never see the way you were spoken about in the media.
Or you will never be able to shake that shame.
And nor will the rest of us.

I was you, I am you. I love you.
You are loved, you are worthy.
You are not a burden and you are not alone.
Reach out to us when you’re ready.

Our faces don’t need content warnings.
We don’t need dehumanising labels like “snakeskin woman” or “mermaid baby” or “plastic boy”.

We need love, encouragement, resilience, privacy, the ability to choose how and when our story is told. We need pride in ourselves and pride from others.

We need the whole community behind us,
United in a mission for better representation.

I don’t want to see another article about ichthyosis unless I’ve written it.

I’m making my own media so I can change the world for you.

I hope you’ll never endure this vicarious trauma.

I was you.
And you will be me.

If this post has helped you or made you think, or if you will use it in your workplace or classroom, you can buy me a drink. Thanks. 

My book Say Hello is out early next year. Sign up to my mailing list to receive updates about the progress