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.
“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:
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!