Carly Findlay with her friend, Paul De Gelder. Photo: Carly Findlay
I recently signed up for a gourmet food tour in Melbourne. I went on my own -- I have no problems making friends (or sharing delicious food) with strangers. A couple sat next to me as the oysters were served. I said hello, and commented on how great the food tour was going to be.
The man's response to my enthusiasm was, "Been in an accident, have you?" He didn’t say hello or follow up the conversation I'd started. So the whole time I was standing there, he must’ve been wondering why my face was red, and felt the need to ask. "No, I was born with a skin condition", and continued eating my oysters. I thought that may settle the conversation. But the questions continued: "What happens when you're in the sun?”
I’ve always marvelled at how having a visible difference makes me public property to be commented on. You see, I was born with a severe skin condition called Ichthyosis which makes my skin red, painful and itchy, and can be socially challenging. (Detailed information about my condition can be found on the Foundation for Ichthyosis and Related Skin Types (FIRST) website.)
When it’s sunny and hot, more people tend to stare, assume I'm sunburnt and ask me questions about my face. So I thought I'd take the piss a little: "Well, more people assume I'm sunburnt and ask me questions about my red face", I quipped with a smile.
Crickets. He didn't find me funny.
"No, what happens when you're in the sun? Does it hurt more?"
I answered quickly and then left the couple. I understand curiosity, but I didn't want to be the topic of conversation for much longer. I didn't want to be his lesson in diversity. I particularly hated that his curiosity was placed before decent manners of a "Hello, how are you?"
Disability and visible difference can be confronting because people are not used to seeing and experiencing relationships with disabled and visibly different people. They see visible difference and disability in the media and assume hero status, or a life to be pitied (Like in those Facebook ‘one like = one prayer’ memes), or worse – a villain status (think Harvey Dent's disfigurement in The Dark Knight).
And too often, people without disabilities are playing characters with disabilities (like Kevin McHale who plays Artie Abrams in Glee) – 'spacking up' as Stella Young puts it. The lack of real disabilities and visible differences, and depictions of normal interactions with these people in the media means there's no fair representation of disability in society.
While some of you may be curious about people who have a visible difference or a disability, and there may be a certain level of discomfort when you encounter us - for the fear of the unknown - please don't forget your manners when you interact with us. Talk to us like you would talk to those 'normal' people. This is how I'd like to be spoken to:
1. If we say hello, say hello back
Our initiation of a friendly conversation does not give you a right to launch into commenting on our appearance or asking why we look the way we do. I will probably answer your questions – to a limited extent. We don't have to tell you the most personal things about our lives during our first encounter. Don't initiate conversation about our appearance before we do.
2. Don't assume intellectual disability
Don't talk slower or raise your voice or worse, assume the person with a disability or visible difference cannot communicate. My friend Todd Winther, a PhD candidate in politics who also has Cerebral Palsy, says one of the things he dislikes about the first encounter with a stranger is being automatically treated like he has an intellectual disability. Todd has written about the way he has been treated by students before teaching a university class. The assumptions about his intelligence are degrading.
3. Don't give us a platitude
Don't say: "At least it's not [insert any illness here]", "It's great to see you out and about", or "You're lucky you look normal". And certainly don't tell us you couldn't handle having our condition. Often when I tell people I am not sunburnt but was born with a severe skin condition, they say, "Phew! At least it's not sunburn, I was worried you got yourself so burnt". There's no comprehension (or apology for their initial question) that my condition has any impacts on my health other than the cosmetic appearance.
Shelley, one of my No Limits mates, has Dissociative Identity Disorder. She hates being told "But...you can't have a mental illness or a disability - you look normal!” "I'm still not sure what I'm supposed to look like?", she says.
Normal is just a cycle on the washing machine, right?
4. Don't be offended if we aren't always polite in answering your question about our disability or visible difference - especially WHEN WE HAVE ONLY JUST MET YOU!
I am not going to be polite all the time. Us disabled people, we aren’t always saintly. We swear, we are rude and we get angry. And so if I'm rude back to you, it's probably because I'm gob-smacked at the audacity of people feeling like they can comment on a stranger's appearance.
My American Twitter friend Carolyn, who also has Ichthyosis, said "People have no business asking. I'll tell 'em what this is but won't answer questions beyond that. I'm 51, so over worrying about offending anyone." And I am too.
5. If you have got to ask, do it politely. Teach your kids that too.
If you ask, preface the question with "I hope you don't mind me asking..." or "Tell me if I'm being rude". Certainly leave this question until after polite hellos are exchanged. And thank us for taking the time to tell you about ourselves.
I was in Bondi with my friend Paul De Gelder. He has a bionic arm and leg as a result of a shark attack. The receptionist at the pub asked him whether he had a bionic arm sometime after we got talking to her. She was polite, and he told her a little about it. No big deal. Paul and I later talked about the questions people ask us, and he told me of a woman who wouldn't even get up off her seat to ask him about his arm and leg - she just yelled questions from afar. Not polite.
I know that sometimes you're just dying to know what's wrong with us. And as much as I hate that expression 'what's wrong with us', sometimes I'm curious about people’s appearance too. But I don't ask. There's a girl I see around, she has a facial disfigurement. I smile at her, she smiles back. We probably experience similar reactions as we walk down the street. But it doesn't matter to me that I don't know what's 'wrong' with her. Because, there's nothing wrong, and she doesn't want to be bothered by my question about her appearance. She's just getting on with her day too.
Carly Findlay is a writer, speaker, community TV presenter and appearance activist. She blogs at Carlyfindlay.blogspot.com.