Carly Findlay

Writer, speaker, appearance activist. Loving life!

  • About me
  • Say Hello – my book
  • Hire me!
  • Support Me
  • Contact
  • What is Ichthyosis?
  • Ichthyosis + appearance diversity resources
  • Disclaimer
  • Shop
  • Guest post contribution guidelines
  • Growing Up Disabled in Australia

Ichthyosis advocacy fatigue

March 11, 2019 Carly Findlay Leave a Comment

Woman with red face and short dark curly hair, looking serious. It’s a closeup photo.

I am tired of the fight.

I’m tired of being regarded as an oncall helpline, expected to educate people all the time.

I’m tired of feeling alone.

I’m tired of being seen as difficult because I speak out about the abuse that happens to people with Ichthyosis.

I’m tired of the very organisation who is supposed to advocate for people with ichthyosis not doing more to advocate against discrimination, and supporting bullies (and me being expected to be quiet about this).

I’m tired of the expectation of having the educate and be nice when discrimination and staring and rude comments happen, so we don’t put people off from interacting with us in the future.

I’m tired of being made to feel I’m not doing enough – like with that journalist with ichthyosis guilting me for saying no to an interview the other day.

I’m tired of being unfriended and blocked by parents when I reach out to offer advice about media and oversharing – even when I’ve lodged complaints about how their kids are misrepresented in the media.

I am tired of poor media representation of ichthyosis.

I’m tired of seeing photos and videos of babies and children with Ichthyosis at their most vulnerable – in pain and in the bath.

I am tired of “ichthyosis moms” seeking fame through going viral. I hope their children never read the nasty things said about them by social media commenters.

I am tired of children with ichthyosis not having the choice to tell their stories on their own terms (if they want to at all), all in the name of awareness raising.


I’m tired of people with Ichthyosis being asked to leave planes, nail salons, restaurants, taxis and stores.

I’m tired that we have to prove we are fit to travel and not contagious, expected to carry documentation like we are illegal citizens.

I am tired of being tagged in every story on social media about cannabis oil being a miracle “cure”for ichthyosis.

I’m tired that we do all the heavy lifting – that we endure discrimination on top of discrimination when we speak out about the discrimination we endure. What a tedious cycle.

We keep raising awareness but things don’t improve.

I’m tired.

Love and solidarity to everyone who is feeling tired too.

I wrote a book on life with ichthyosis. Details over here.

Share this:

  • Click to print (Opens in new window)
  • Click to email this to a friend (Opens in new window)
  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)

Related

Uncategorized

Leave a Reply Cancel reply

You must be logged in to post a comment.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Socials

  • View tune.into.radio.carly’s profile on Facebook
  • View @carlyfindlay’s profile on Twitter
  • View carlyfindlay’s profile on Instagram
  • View sqoggle’s profile on YouTube

Book me to speak

Sign up for some love in your inbox

Listen to my podcast

Tune in

Enter your email address to receive new posts by email.

Archives

Popular Posts

  • What's with the image descriptions on my social media posts?
  • Dear disabled friend on International Day of People with Disability 2021
  • Interview with Beth Bradfield from Malory Towers
  • July is Disability Pride Month
  • The death of Offspring's Dr Patrick Reid. The TV death that stopped a nation.
  • Six at Best - Eddie Perfect - Offspring
  • Ichthyosis and exercise
  • Stop praying for and exploiting disabled children and adults on Facebook.
  • Ichthyosis Awareness Month - The Girl Behind the Face: "Life’s rarely been split between either laughter or tears; both have existed simultaneously."
  • Appearance Diversity: Jess's story. "People still stop on the street to stare at me, and to make comments about my physique."

Copyright

The material on Tune into Radio Carly is copyright. The writing in this blog is by Carly Findlay unless otherwise stated. Most photos in this blog are by Carly Findlay unless otherwise stated. Please do not reproduce without permission from Carly Findlay. This blog represents my personal opinions and experiences. It does not reflect those of my employers'. The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about. Where stared, I use affiliate links on this blog. By clicking them, I receive a small percentage of the purchase.

Copyright © 2022 · Daily Dish Pro Theme on Genesis Framework · WordPress · Log in

loading Cancel
Post was not sent - check your email addresses!
Email check failed, please try again
Sorry, your blog cannot share posts by email.