It is an interesting (not necessarily comfortable) place to be in – the subject of discussion and speculation. Things like this happen quite regularly, still they never cease to amaze me:
While waiting in a queue at a cafe near work yesterday morning, I heard the baristas say things like “she uses cream because her body produces too much skin”, and “we’re so excited she’s getting married…no, he has normal skin”. Of course it caught my attention. I find the language people use interesting. Normal skin.
The baristas were talking to a customer who was so curious about my appearance they asked the baristas about me (when they could have either asked me myself or kept their curiosity to themself). I go to this cafe a lot, and the girls who work there are wonderful – always happy and interested in my wedding plans and they play awesome 90s music.
When I got to the front of the queue, I asked the baristas whether they were talking about me, and they said yes. That customer had the audacity to ask them about me. “Why is her face like that?”, they asked. I was especially taken aback about the assumption that I’d be marrying someone else who looks different.
They handled the customer very well. And they also told me they are often asked about me. Who does that?! But we all agreed that what a stranger looks like is none of anyone’s damn business. It’s certainly not for cafe staff to explain their customer’s appearance.
And then we had a laugh. People are intrusive. It is rude to ask someone directly about their appearance. And it’s rude to ask someone else about it too. There’s an assumption we can’t talk for ourselves, or that it’d be more polite not to ask us. I prepared a talk for a conference I am speaking at today, and one of the points I made is let the person with the disability/facial difference lead the conversation. Don’t you raise it first.
I ask you to watch a video. I want to show you that what happens to me is not uncommon. Sometimes when I talk about situations like I’ve mentioned, people try to justify intrusive behaviour. I’m tired of that. This intrusion is real. Unfortunately it’s common for those who look different.
“I wanted to stop telling people what happened to me,” he says in the video. “I wanted to show people what happened to me.”
Just watch this short film by Jonathan Novick.
Before you go to ask someone about their appearance/disability, it’s important to consider how many times that person has been asked before. Because it’s very tiring. Just because you are curious, it doesn’t mean the curiosity needs to be satisfied with an explanation.
I find it really weird that the bar staff would answer on your behalf,especially when they know you and know that you're within hearing distance.I find that really distasteful and rude.They should have redirected that obnoxious customer to either ask you or shut up via a quip like "She looks that way for the same reason you look like you do." or had it been me I'd have called you over like "Hey Carly, c'mere…so and so thinks you're the most interesting person in the place and can't stop asking about you."
Carly,
Turn the intrusions into opportunities. Educate people (the general public) about ichthyosis to help them understand more about it. Distribute brochures and leaflets that will aid with your activism to those that ask. Perhaps people are genuinely curious and would like to be more aware. Give them the opportunity to become more knowledgeable about the continual challenges presented to you on a daily basis.
People are always talking about others, in both positive and negative ways, and this discourse can facilitate conversations and greater understanding. Utilise your conversations to engage with strangers wisely for your benefit.
Naomi
Yes Carly, there's just something about the face that is different, about the body that is different that seems to give noseyness free reign. Living with a mild but evident facial difference, I don't so much get people asking intrusive questions, but I do get people making judgements of my ability to do something based on what my face looks like and their judgements of what I am capable of
I too find it weird that the staff felt the need to answer on your behalf.
I will take a different line to your normal fans and be honest. you seem really defensive and angry. While you say you accept your condition, it seems like you have a lot of trouble accepting the fact you don't fit society's definition of 'normal' which will unfortunately come with it staring and questions . Whether you like it or not people will probably stare at you. Does that make it ok? No. Is it rude to stare? Yes. However this will probably never change, whether you like it or not your appearance is 'different'…does 'different equal bad? No way! When I first came across your blog or maybe it was picture of you (I forget) I thought 'oh gee what happened to that girl, is she badly sunburnt'. If I saw you in real life I may glance twice…Like I would if I saw someone wearing an amazing outfit, or if they had a huge cast on their leg, had a really cute baby, etc.am I a horrible, obnoxious bigot? No way. I wouldn't go so far to quiz café staff or ask you about your appearance though which I think was rude. In a perfect world no one would stare at you or question you about your appearance, and of course you are entitled to tell people to mind their own business if that's what you want to do however I think its important to recognise that not everyone who looks twice at you is coming from a place of nastiness…nosiness maybe, but not nastiness.
For those who are lucky enough to read your blog, its really informative and helps educate the masses about your skin condition. However I don't think you should label everyone who may glance at you twice as horrible, obnoxious or uneducated. People will unfortunately stare at anything that doesn't fit their or society's definition of 'normal'.
I haven't labelled this customer as horrible obnoxious or uneducated.
I know the difference between curiosity and rudeness/nastiness. There have been some really horrible people that I've encountered though, and fortunately the good ones outweigh those tenfold.
Why does she have to educate people every time they get get curious? shouldn't she be able to go and buy a coffee (or whatever) without having to tell complete strangers her life story?
Agree