The other night I went on the Footscray Rickshaw Run. I went on my own, and I have no problems making conversation or friends with strangers. There were about 20 people who attended. A couple were at a bench with me as we were served oysters. I said hello, mentioned how great the food tour will be.
The man's response to my food tour enthusiasm was "been in an accident, have you?". He couldn't even say hello or follow up the conversation I'd started. Rude. So the whole time I was standing there he was wondering why my face was red, and felt the need to ask.
I replied "no, I was born with a skin condition", and went back to eating my oysters. I thought that may settle the conversation. He didn't need to know more about me, he hadn't even taken the time to say hello!
But then! "What happens when you're in the sun?", he asked.
It's been particularly hot in Melbourne lately. A heat wave, you could say. It's been over 30 degrees for more than two weeks. And when it's sunny and hot, more people stare, assume I'm sunburnt and ask me questions about my face. So I thought I'd take the piss a little:
"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?".
Sigh. I answered quickly and then left the bench. I understand curiosity, but I didn't want to be the topic of his conversation for much longer. There was food to appreciate. I didn't want to be his lesson in diversity. I particularly hated that his curiosity was placed before the decent manners of a "hello, how are you?". I always marvel how having a visible difference has meant what's so personal to me has become publicly commentable.
I read an article about a mother who took a long time to get to love her son who was born with a severely disfigured face. The article states:
Lawrence Carter-Long is right. The disabled are segregated by institutions and attitudes. A fear remains, and intrusive curiousity seems acceptable.
'Advocates say that honest stories like theirs help others to accept the disabled.
"Being surrounded or having contact with people with disabilities could have made the transition easier her," said Lawrence Carter-Long, spokesman for the National Council on Disability. "Part of the problem is [the disabled] are segregated, if not by institutions, then by attitudes. We don't see them in the work place or in school, so the fears and the worries are more pronounced. It's not an issue of malice, but of proximity."'
I remember a few years ago just after I started this blog, a reader told me that she didn't know how to approach someone with a disability or a visible difference if she saw them in the street. She told me that if it wasn't for getting to know me through my blog, she wouldn't know how to react to me if she encountered me in person. "You'd talk to me like you would anyone else you meet", I suggested. I guess I'd make her nervous. She may not know where to look, and I may make her uncomfortable just by being someone she wasn't used to seeing. I was pretty disappointed and felt that I hadn't done my job in breaking down stigmas through writing here. Because my story wasn't enough, she was still afraid of disability, and how to react on encountering a disabled person, due to her lack of exposure.
And that's the thing. 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 awful 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 - 'spacking up' as Stella Young puts it. (Just writing that term has put the Fleetwood Mac song You Can Go Your Own Way in my head forever.) We just don't see enough real disabilities and visible differences (without scar makeup, I mean) in the media, so there's no fair representation of disability in society.
And that makes it hard for people to know how to act around people who are different, perhaps because normal interactions with the disabled and visible different are rarely depicted in the media. We are people too - getting out to do the shopping, going to work, spending time with friends, and even enjoying a rickshaw ride in Footscray.
So while some of you, your family and friends 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.
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. Yes I will probably answer your questions, with limits, but I won't be impressed if "fuck you're sunburnt" is the first thing you say to me. 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 happens to have Cerebral Palsy, told me 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 when he's taught a university class. The assumptions about his intelligence are quite 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 "oh, 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?
And similarly, don't assume chronic illness or disability only affects older people, and look surprised when you meet a young person living with a condition. Michelle says "With the cane most think I have a sport injury, "too young" is the usual. When I explain [I have Dysautonomia] they mostly look uncomfortable. People always seem shocked that you can get really ill so young, like there's a 'sick' age."
4) Don't be offended if we aren't as 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 arent always saintly. We swear, we are rude and we get angry. Frankly, if you're the sixth person to tell me I'm sunburt today, I will be feeling pretty over it. 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.
Don't expect me to be your lesson in diversity.
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 maybe thank us for taking the time to tell you about ourselves, don't just say "I thought you were [sunburnt is the word that I usually get]" and then walk off.
I was hanging out in Bondi with my friend Paul De Gelder last weekend (see below). He has a bionic arm and leg, as a result of a shark attack. The receptionist at the pub's front desk asked him whether he had a bionic arm, sometime after we got talking to her on our sign-in. She was polite, and he told her a little about it. No big deal. Paul and I got talking 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 peoples' appearance too. But I don't ask. There's a girl I see around the cafe I frequent, she has a facial disfigurement. I smile at her, she smiles at me. 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.
Related reading: Our disabilities do not inconvenience you.