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

Rest in peace Megan Barron.

September 10, 2015 Carly Findlay Leave a Comment

(Picture via I refuse EB)

 

I am devastated. It makes me so sad and angry that skin conditions can be fatal.

I woke up to read my online friend Megan Barron has died. Megan had Epidermolysis Bullosa (EB) – an extremely severe skin condition.

Megan was talented – she interned in the disabilities department of the White House, and wrote for policy websites. She was so smart and funny – and we always made light of our shared experience of rude encounters with strangers, something we had in common. Megan wrote a lot about life with EB, asserting her (our) right for respect.

We’d never met in person but I felt we shared a closeness, discussing difficulties of being an adult with a rare condition when so many others speak for us. Scrolling back through our messages this morning reminded me how much she’s done to shape attitudes about skin conditions (both externally and in skin condition communities). I’d often message her to seek her opinion – I valued it so much. She really *got* disability politics and pride, questioning the way skin conditions are perceived, and reiterating she did not need saving. She was one of the few who share my strong opinion that questions about our appearance are intrusive.

Here’s an excerpt from my favourite piece of her writing.

“Though Individually uncomfortable and at times, even amusing, these incidents collectively have left scars on me as real as the ones on my body. Rather than heal me as they intended (and you know the old maxim about good intentions), they helped break my self-esteem. They brought forth questions I’ve sought to stifle, questions that repeat in my head with sadistic rhythm when I’m out in public. Do I really seem that broken to people when I walk out the door? Does my body project a fate seem so grim that I actually need saving? Every once in a while I have to actively remind myself that what happened to me was an objective case of a genetic splicing error-not the Devil’s handiwork.”

Do take the time to read her blog. She was such a good writer. So intelligent.

Rest gently, Megan. You are so missed. You are far too young to leave this earth.

I hope everyone who knew Megan is doing ok. Sending my love to her family and friends.

In the past nine months, three feisty, beautiful, intelligent, world changing young women I’ve known and loved have passed away. It’s not fair. Life is so precious.

 

 

 

 

 

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

Comments

  1. Cheryl @blissandmayhem.com says

    September 11, 2015 at 12:00 am

    Oh Carly. This is so sad. Sending so much love to you and also Megan's family and friends in such a difficult time. oxoxo

    Log in to Reply
  2. bruisesyoucantouch.com says

    September 11, 2015 at 11:45 am

    This is all so devastating for Megan's family and for your community, Carly. I both admire and love what she had to write about being broken and how it's ok; about not having to be 'rescued' or 'fixed' by society and just living our lives. Why can't we just be as we are – with an illness, disability or not? I don't need to be fixed and neither did Megan. I'll be tipping my glass to her this evening. Big love XO

    Log in to Reply
  3. Min@WriteoftheMiddle says

    September 11, 2015 at 8:56 pm

    I'm so sorry Carly! It's so terribly unfair and sad. My thoughts are with Megan's family and friends. Big hugs to you. xo

    Log in to Reply
  4. Caleb says

    September 15, 2015 at 9:34 am

    I knew Megan in college. She is dearly missed. She and I, along with a few others, established an advocacy organization for people with disabilities on our campus. I was so saddened to hear this. Thank you for honoring the memory of such a dear, sweet friend.

    Log in to Reply

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?
  • Interview with Beth Bradfield from Malory Towers
  • July is Disability Pride Month
  • Six at Best - Eddie Perfect - Offspring
  • The death of Offspring's Dr Patrick Reid. The TV death that stopped a nation.
  • Ichthyosis Awareness Month - The Girl Behind the Face: "Life’s rarely been split between either laughter or tears; both have existed simultaneously."
  • Creamoata: a much loved, yet lost food of my childhood. Help me find it.
  • Stop praying for and exploiting disabled children and adults on Facebook.
  • Ichthyosis and exercise
  • Miss You Love - an analysis of a beautful Silverchair song

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.