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.