I could truly relate to her blog entry - the idea that when you have a physical difference/deformity/disability, your privacy is lost and people feel they have the right to intrude - stare, ask questions and comment at their own liberty.
Every single word of Elle's blog entry has resonated with me - what is it like not to be stared at?
I want to write a follow up piece to Elle's blog entry, but I need some thinking time. I want to explore MacGregor's research more, too.
I hope you get as much out of Elle's words as I did. Thank you Elle.
[it wasn't her words that shook me]
Especially important is the lack of privacy that exists for individuals with facial deformity. Most of us can enter social situations and “blend into the crowd”. However, this is not the case for a person with a facial deformity. Facially disfigured individuals often have their privacy violated. Frances MacGregor states, “...in their efforts to go about their daily affairs, they are subject to visual and verbal assaults and a level of familiarity from strangers, including naked stares, startle reactions, ‘double takes’, whispering, remarks, furtive looks, curiosity, personal questions, advice, manifestations of pity or aversion, laughter, ridicule, or outright avoidance. Whatever form the behaviours may take, they generate feelings of shame, impotence, anger and humiliation in their victims.” (MacGregor, 1990.)I have read maybe 50 journal articles about this stuff in the past three days for my research project and this is the only one that blew me away. I swear MacGregor has a facial deformity or is very close to someone that does. Only my mum, my brother and maybe my best friend would know even half know that stuff. I constantly say to my mum things about when someone does a double take and or if someone serves me at a shop and I can tell, if we were elsewhere and they didn't have to be polite to me, they would be a starer or sometimes a laugher. The pity smiles, children's curiosity, the whispering and the nudging, the laughing and the pointing. The blatant starers that don't care if I clearly notice, the trying-to-not-look-like-I'm-staring starers, the obvious double takers, the second glancers that try to keep walking and look back at me perhaps hoping I won't notice, the starers that when I look at them they give me a pity smile like, "Oh I feel so sorry for you, but thank god it's not me", the curious ones that at least smile normally like I'm actually a person but are trying to work out what's wrong with my face, the starers that nudge their friend and try to subtley point me out, the men that I can tell are surgeons looking at me medically (one even said to me once, "I'm not being rude, I'm just a plastic surgeon trying to work out what you've had done"), the ones that I think have a family member or a friend with a deformity... Who knew they'd be so many different ways to look at someone? 99% of the time, that stuff barely makes me blink anymore.I've had conversations with very few people about the details of this stuff, but I just can't believe that article. I've never seen something hit the nail on the head so perfectly. I have said to my mum, I just wonder what it's like to blend in. To get on a train and just be another person, to sit down without a thought rather than stand up because sitting down means more staring. To walk past someone on the footpath and not get looked at a little longer than you should be (if not blatant staring, let's be honest). Then walk further past them and not feel the ones that turned and continued looking even at your back. To walk into a pub or a venue and not be nervous of the drunks because being drunk means losing social inhibition - and courtesy; they are the ones that make just staring look like child's play. I just don't know that kind of a life. Being alone and walking into a train full of people and not one person staring or second glancing at you? What is that like?This is not a depressing entry. I'm not sad or upset in the slightest. This article just amazed me. I thought it was awesome.
(Originally posted at maybe in another life.)
Carly I think it is great you reposted this. Elle has such a great insight into this stuff and I am glad you are able to share her words with more people.
ReplyDeleteLooloo, this is so well written :-). Even after the all these years and the many many hours we have spent talking about this, I never really thought of it from this perspective. Perhaps I should ignore you more(haha). (not sure why I did not post this on your blog)
Awesome awesome awesome!!! Like both of you girls :-)
Fi (the best friend)
Wow - Elle's words are such a wake up call to read. Some powerful insights and also a reminder to me of the privileged position I am in by being able to "blend into the crowd". Thanks for reposting, Carly.
ReplyDeleteVery flattered that you wanted to re-post this, Carly. I like having someone to talk to that understands what it's like :)
ReplyDeleteThe article I first read that in was from here: http://www.cpcjournal.org/doi/pdf/10.1597/1545-1569(1992)029%3C0578%3ASAPEOM%3E2.3.CO%3B2 It's not written by MacGregor, but it was the quotes of hers that really stood out to me. Just in case you wanted to read it.
Talk soon xo
Thanks for the insight, it is always good to be more aware of what other people go through - whatever their particular issue is. I really appreciate this information and being taken out of my personal bubble. The "walking into the pub and being afraid of the drunks" part made me shudder imagining how tough that must be and just picturing what could happen in those situations.
ReplyDeleteThanks Carly, and Elle.
Heidi xo
This was very interesting. You wonder how and when we are programmed to know what is "normal". Infants don't look at people in the way older children and adults do. Every thing new is beautiful and accepted. It is a shame we grow out of this. xx
ReplyDeleteI love your blog and totally admire everything that you do and the inward strength that you must have, putting up with hurtful comments. Just recently, I've seen a guy around Adelaide Uni (though not in my course) with, I'm pretty sure, the same skin problem as you. A lot of my friends have commented on it and I was actually pretty angry at their insensitivity - I guess your blog has really educated me and taken me out of my ignorance - so thank you for that. x Deb
ReplyDelete