17 January 2017

You are not a good disability ally if you're ableist.

This post contains some ableist language that might be triggering 

Yesterday I engaged with two people who excused their ableism by saying they work with children and adults with disability. No.

That's like saying you know a black person so you can be racist.

Knowing a disabled person, or working with them is not a free pass to be ableist or discriminatory. 

One person admitted to not wanting disabled people represented in media and advertising, and the other admitted to using "fucktard" around friends with disability. Both said they work with disabled people.

You are not a good disability ally or support worker if you use ableist language and cannot see the problem.

You are not a good disability ally or support worker if you don't listen to actually disabled people.

You are not a good disability ally or support worker if you say you've got friends with disability so it's ok to be ableist, discriminatory and don't see the need for disability representation in the mainstream.

You are not a good disability ally or support worker if you fail to amplify disabled voices, othering us and underestimating our ability. 

You are not a good disability ally or support worker if you regard your studies or work in disability to be above the lived experience of people with disability. 

You are not a good disability ally or support worker if you don't educate yourself about the problem with ableist language, ableism and discrimination. 

You are not a good disability ally or support worker if you fight ableism and discrimination with the same behaviour. 


(Here's a resource about ableism to get you started. Here's another on the R-Word.)

09 January 2017

My wedding story in New Idea magazine! Why I'm changing the narrative of disability in the mainstream media.


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. 

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.


*absolute sarcasm

For advice on what to do when the media asks you to share your story about your disability, facial difference or Ichthyosis, click here

Has this blog post made you think or laugh? Why not buy me a drink to show your gratitude? Thanks! 

08 January 2017

Support group for Australian and New Zealand women living with Ichthyosis.


I have set up a private Facebook support group for Australian and New Zealamd women (and people who identify as women) who have Ichthyosis. 

If you fall into this category, you are welcome to join. Women can discuss sensitive topics they might not feel comfortable discussing elsewhere. 

I've limited the group to Australian and NZ women living with Ichthyosis for a number of reasons - treatments like creams and tablets that are often only available in Australia and NZ and suggestions of creams in USA/UK/EU/Asia might not be available here; there are many international Ichthyosis support groups; Australia and NZ are geographically isolated; there are already parents and carers groups; and this will be a safe space for women only. 

Thanks! Hope to see you there. 

(If you are not an Australian or Zealand woman living with Ichthyosis - a parent, carer, male, sibling, Ichthyosis charity worker, doctor, nurse, not living in Australia or NZ - there are many other support groups you can join. I've listed them here.)


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