03 September 2012

The use and discussion of my picture on a murky website.

When writing my thesis I reflected on the way I used to blog to how I do now - mainly how much trust I have developed in my readers. Before Tune into Radio Carly I had other blogs, and I was reluctant to use my name, photo or mention my skin condition. Back when I started using the internet, in 1996, the internet was uncharted territory. Until recently, it was regarded as unsafe to share information with strangers online. And I freaked my parents out by meeting so many strangers from the internet in real life.

The sharing of pictures and creation of horrid memes against disability is another form of trolling. There are probably many many people who don't know that their image is being shared. I see horrible comments below images and stories about disabled children. I see tweets about Ichthyosis that make me feel sick. This is not ok.

I mentioned that I was reluctant to share my photo online because I feared that it would be misused - as in, discussed on an unsavoury website, about how grotesque I look. Now I share so much - pictures, stories and personal events. I have great faith in humanity.

Today when looking at my blog statistics, I saw that someone had visited my blog via a forum called My Deathspace. Uh oh. The name doesn't sound like sunshine and happiness.

So I created an account to enable me to view the page, and held my breath. What could they be saying about me on My Deathspace? (And I realise how narcisstic that sounds, but when you look as different as I do, you may worry about being misrepresented too.)

The thread is called 'NSFW - Random pictures!!!!'.

I scrolled down to see some discussion about babies being born with penises on their heads. And then harlequin ichthyosis - saw an online friend's name mentioned (and I emailed her to let her know). There was discussion about the discussion - showing concern and pity instead of ridicule (thank goodness) and then saw my picture. This one.
And then I felt a bit sick. I don't have so much of a problem with my picture being used without permission, but I do have a problem with it being discussed in the context of the freakshow or grotesque people. I have a problem with the derogatory discussion of visibly different people. I held my breath again to read what was written about me.

Someone said:

"There is an aussie blogger who has ichthyosis - is that what a harlequin is?" and linked to my blog.

And then someone else was so kind:

"what a great blog she has! i like this gal! good find!"

It could have been so much worse.

A few friends suggested I write back, educating them. And so I did - my comment is yet to be moderated yet there's a picture of someone breast feeding a gnome below the discussion about me. I digress:

Hi there

It's Carly - the Aussie blogger you posted a picture of.

Firstly - thank you for e compliment. Your words are much kinder than I expected. Im not comfortable with my photo being discussed on a site like this, but I know that I put my story out there in my blog so it is inevitable I'll be discussed somewhere.

My form of Ichthyosis is not harlequin though similar. The variations of Ichthyosis are wide, and treatments vary. It is medically and socially challenging but I have used it to an advantage through writing and speaking and tv work :) I recently went to England to speak at a conference about appearance - speaking about the assumptions people make about my life - taking pity on me etc.

For more information visit carlyfindlay.blogspot.com

There's a page dedicated to Ichthyosis on my blog - http://carlyfindlay.blogspot.com.au/p/what-is-ichthyosis.html

I hope you can show others the same respect you've shown me.

Thank you again. Kindest regards, Carly

I don't feel so sick now. A bit shaken I guess, but ok. I put myself out there, so I have got to expect it, don't I?

I guess I also judged the type of people who may use these sorts of sites. The comments about me were not so bad, and the users showed compassion.

Before using the internet to discuss what ANYONE looks like - traditionally beautiful or visibly different - have a think about that person finding your words.

Has this ever happened to you? How did you handle it?

(And the thread is here if you're interested: http://mydeathspace.com/vb/showthread.php?1313-nsfw-random-pictures!!!!/page1145)

Edit: my picture was removed from the discussion thread - thanks original poster. I appreciate it. Though despite being the religious screen shotter, I didn't screen shot the original thread!


  1. Carly, i'm not sure how i would feel or deal if i was you but once again you have showed how classy and admirable you are. Love your stuff. Hebah x

  2. I am not clicking over. I can't believe such sites exist, but I wanted to say well den on commenting in a polite and lovely manner. Your response was fabulous.

  3. Such dignity and class. What an amazing woman you are Carly. You should be so proud of yourself.

  4. When people can take credit that they actually know you, then they can take credit for being acceptable worthy beings in this world.

  5. Beautifully handled by a beautiful soul.So many could learn from your respectful ways.x

  6. You handled that so magnificently, Carly. You continue to educate and inspire people in all different forums. Even in deathspace. xxx

  7. I think you handled the situation with grace and class. I used to frequent a site called Essential Baby and a few times, other members would tell me that I was being discussed on other sites for my opinion on certain matters. I never clicked over because I have no doubt there were nasty things being said. I KNOW I wouldn't have the same level headedness you've shown with your response. I applaud you xx

  8. Wow Carly, you're a bloody inspiration. Your kindness knows no bounds. I stead of slamming, you took the higher ground, bravo :)

  9. I agree, Carly you are an inspiration. I'm clicking over either. Great to meet you, by the way.

  10. Well done Carly. Weird that stuff like that exists but good job for handling it :) Shell

  11. Carly, this is actually the first time I have visited your blog (love your style). Honestly don't know how I'd handle it if people were to comment on my appearance on an open forum. Your grace and dignity in handling it the way you have has probably left a few people red-faced whilst still leaving you on the higher ground. Brilliant!

  12. Serious kudos Carly. Wonderful response!

  13. Wow, seriously well handled and so elegantly! Bravo

  14. Nicely done Carly! This situation is exactly what you warned me about when using Evan's pics online. You handled the situation perfectly and with such class! I admire your strength when going into that site not knowing what you were going to find. It's unfortunate that there are even sites like that but you made your voice heard and hopefully those posters now understand how their site can be hurtful.

  15. I've seen this happen several times to harlequin babies and EB in particular. YouTube is downright noxious in the comments, and Reddit's nearly as bad. Even on Laura's site, we've run into point-and-gawkers a few times.

    You handled this wonderfully. Stay classy!

  16. No, i wont be clicking over to that site. Your response is lovely, you are so mature and classy. Well done xxx

  17. What an excellent response Carly!

    I thought long and hard before putting photos of myself on my blog. Eventually I decided that I would stick to my philosophy of being open about who I am. My blog and my twitter handle are my full name, it is easy to google me, so why not have a photo of myself out there. As far as I'm aware it has never appeared any strange places but it is something to think about.

    I often think about the people whose pictures form ongoing memes like the girl with the really wide open eyes and slightly odd smile. Who is she? I hope she finds it funny, I suspect she does not. It is such a minefield.

  18. I applaud you for such a well thought-out & level-headed response to finding your picture in a discussion thread like that. You are the biggest class act!

  19. I love the way you handled this Carly - mature, level headed and courageous x

  20. Carly I have never heard of this condition and will now click over to your dedicated page to find out more.
    I am glad this story had a happy ending of sorts for you and also that I for one will be a little bit more educated because of it.

    Popping over from Styling You.

  21. Hello everyone
    Thank you so much for your lovely comments and support. You really did lift me up. :) thank you.

  22. Good on you! I had about five of my photos taken from my blog and put on a Portuguese pregnancy porn forum. They were photos of me being pregnant wearing clothes I had made, nothing pornographic about it. Oh wait, you may have seen my shoulder in one? It FREAKED me out and I sent them an email and called the police but there isn't really much I could do. I never heard back from that website and I try not to think about it now. It made me feel ill that people are that messed up.

    I'm really glad yours got resolved :D

  23. Well done! You are brave and empowered. I admire your gracious email to the site - it's an inspiration in confrontation and problem solving.

    Thank you! I love your blog - your intelligence, beauty, warmth and verve really shines.

  24. Hi to all, how is everything, I think every one is getting more from this website, and your
    views are nice in favor of new viewers.
    Stop by my blog post ; how can i earn money online

  25. Greetings! Very useful advice in this particular post!
    It's the little changes that will make the most significant changes. Thanks for sharing!
    My weblog : affiliate meaning

  26. Hi Carly

    so sorry to hear that has happened to you. You are an amazing lady!!!

    Interestingly I haven't ever had any peculiar searches until recent.
    Mine came up with someone found me as I have been wrongly accused for being another bloggers blog bully/troll!
    Can you believe what I thought when I saw that.
    Anyway - I know the truth - there is no truth to the rumour involving me and that is all that matters.

    You keep on being so awesome - your words are a divine read every time I visit even though I may not comment.

    x L

  27. Carly, you are indeed a beautiful inspiration to all of us. Who in this world is normal looking? no-one, we all have faults but, some are so deep that they can only be seen when they bully others or make nasty comments. You ARE awesome girl & you have the love & admiration of many people around the world. Like another girl who is inspiring the world, Lizzie Velasquez you are doing an amazing job. I envy you both for your wonderful & beautiful nature. ♥

  28. Hello Carly,

    Greetings from India. I just discovered your blog through News.com.au and I can't begin to describe how much your story inspires me. You're awesome!

    Saikat Chakraborty


Thank you for reading my blog. I love receiving comments :)
I really appreciate the time you've taken to write to me, and to share something about yourself.


Related Posts with Thumbnails