The rules of staring
4th February 2007
Nope. I shouted, "Don't stare at me for f***'s sake, it's rude!" Their response? "Calm down, we've seen you on TV!"
A similar thing happened a week later. I was walking home from work when a sophisticated-looking woman stopped me in the street and said, "I hope you don't think I'm being rude, but I've noticed you walking around here a lot and I was wondering, what exactly is it that's wrong with your ..." followed by the hand-to-chin motion.
"Yes, I do think you're being rude," I replied, "and I can't believe you don't think you're being rude."
"Well, people stop me in the street to ask me questions," she retorted.
"I don't care!" I said. "You're being rude!"
"Oh well, then, I won't stop to chat to you again," she said, as she walked off in a huff.
I continued walking home, but had to stop and grab a railing to steady myself as a sudden rush of adrenaline hit me. Although I felt good that I had at least stood up for myself, as I was damned that I was going to give my private medical history to a stranger on the street, I was left with a gnawing feeling that the woman had not realised how rude her questions were. I was angry at myself that I hadn't managed to show her that. Most of all, I was angry that I had been left feeling angry.
These two experiences showed me that I still don't know how to deal with people who stare at me, make rude comments or ask me questions about my face. Although I can deal calmly with some situations, there are times when it's so out of the blue that I'm either stunned into silence or left shaking with anger.
What can I do to prevent myself feeling this way, or even to avoid these situations in the first place? It's not as if I can just steer clear of weird-looking people for fear of them hassling me. I am one of the weird looking people! It's the normal-looking people I have to watch out for!
It was so much easier to deal with when I was a kid. I remember during one family holiday to Hastings, a boy came up to me and went, "Eww! What's wrong with your face?" Coolly, I replied, "I have a horrible disease which you'll catch if I breath on you". I followed this up by breathing deeply into his face. He ran off screaming and I stood there feeling very, very pleased with myself. Yes, it was naughty, and I probably scared that boy for life. But I was only 12 at the time, and dammit it felt good!
But now, as an adult, I am all too aware that the impression I give people counts. If I'm rude or swear, I leave them with the impression that all disabled people are rude and uptight. If I'm nice and polite, I let them think that it's OK to stare and ask intimate questions.
Perhaps I'm being too nice to these people? Perhaps I should just tell them to piss off and not care what they think? And maybe the next time someone asks me what happened to my face, I should just tell them that I did some heavy drugs in the late 1990's that really messed me up. It'd be a whopping great lie, but hey, it might just teach them to say no.
Seriously, I do find it hard. The most difficult part is the fact that whatever I say or do - right or wrong - I will always be left questioning my response. I guess it's something that I will hopefully learn to deal with, without losing my temper and without taking it out on myself. I'm confident that I will.
1. Don't start your conversation with the phrase: "I hope you don't think I'm being rude, but ...". It might be a better idea to start off with "Hello".
2. Don't whisper to your wife/husband/partner/friend and follow it with a hand-to-chin motion, as that will just make me feel paranoid.
3. Don't approach me just after 6.00pm on weekdays, because I'm probably on my way home from work and desperate for a cup of tea and a Kit Kat.
4. Don't, under any circumstances, approach me during the fourth week of the month because it's usually my, er, 'time of the month' and I will already be in a murderous mood. Men especially should take note.
5. If I've answered your question "What's wrong with your face?" with the answer "Cherubism", then please don't expect me to follow this up with detailed medical explanation of what Cherubism actually is. You can just bleedin' well Google it and find out for yourself!
6. If you see me in a restaurant, it's fine to glance at my face during the hors d'oeuvres. But if I find that you're still staring at me after the second course, then you're in trouble. No one messes with my dessert!
7. Soooo not a good idea to ask me out loud if I'm an alien. Proud as I am of my alien heritage, I'm trying to keep it a secret, as you never know if some FBI agents might be listening.
8. Don't stare at me when I'm with my dad. He's tough. And I bet my dad's tougher than your dad.
9. Don't stare at me when I'm with my mum. She's even tougher than my dad.
10. Don't stare at me if you see me wearing a rucksack. Chances are that it actually contains a secret camera and I'm filming you for a documentary. Your wicked stare will probably get edited into slow motion and screened across the globe. You will be vilified by millions of viewers who will spit at you in the street, and you'll have to go into hiding.*
* Just kidding. Maybe.
Live community panel
Listen to our regular razor sharp talk show online, or subscribe to it as a podcast. Spread the word: it's where disability and reality almost collide.