It seems the more people I meet, and the more friends I make, the more I am reminded that people do treat me both normally and differently. Almost all of the new people who come into my life comment on how much they notice the staring. I never realised staring is that prominent until people remind me.
Tash, a friend I met through blogging, once said to me that she often forgets why people stare at us when we go out together. I am so used to being stared at and commented on that I forget what it must be like for my friends. Of course, I don't feel like my appearance is a burden on them, but I imagine the stares we receive must be just as tiring for them as it is for me. Camille has said that since her lung transplant (which means she no longer carries an oxygen tank with her), she's noticed a lot more stares when we go out together, because she no longer gets stared at alone.
James Partridge, CEO of and author of Changing Faces (the charity and book of the same name), wrote about how when people with visible differences are in the company of people with 'normal' looking faces, it can put strangers at ease during first time encounters - it shows that we are accepted by society. Partridge also wrote "being in a crowd with normal faced friends will almost certainly protect you from abuse and assure your integrity; the very fact of being with a normal-looking person will give you credibility." Furthermore, Partridge writes about implied slurs - people worrying their status of attractiveness could slip by you being in their presence. Partridge uses the example "You aren't pretty enough to be seen among us"; and adds "Nothing may be said, but the looks tell it all." Lifelong experience of having a visible difference has taught me how to read looks and hesitant behaviour from strangers (and sometimes people I know). I am not being paranoid, or thinking the worst of people - I just know these looks. There have been occasions where people have hinted they don't want me in their photo. And I'm certain that a reason for relationships not getting off the ground is that some boys have been embarrassed to be seen with me and not sure how to handle strangers' reactions.
My friends can also see reasons for me to be frustrated with ignorance, hurtful comments and discrimination, and how sometimes I can't keep on being polite. Recently I had dinner and a long, long chat with Kath, a friend who is missing part of two diagonal limbs. She is incredibly smart and funny, and very comfortable and confident about her disability. We were chatting about disability, and how it is just so tiring explaining and defending the way we look, and how we prefer to educate people on our own terms. She said that she is happy to stand in front of a lecture hall or write an article, but she doesnt want to educate people in her every day life just walking down to the shops. Which is the way I feel. I believe it's ok to only want to educate people on our own terms. When the taxi driver thing blew up in July, the things that annoyed me the most were that people expected me to educate everyone I meet - that I should be ok with answering every question that comes my way because I experience this all the time; and that I should also be polite in all my encounters. And for those who know me, and experience what I do by being a friend, can see that sometimes that's just not possible.
Tash has written her perspective of having a friend with a visible difference - it's one of the nicest things anyone has written for and about me.
"Carly and I have been good friends for over a year now, sharing laughs, going to new and different restaurants around Melbourne, attending movies and talks, and even travelling to Canberra together for the Human Brochure weekend. We have bonded over blogging, social media, and disability and other social justice issues we are both passionate about.
When the spotlight hit Carly amid the treatment she coped from a taxi driver a couple of months ago, and the positive and negative responses she got from highlighting this treatment, I was reminded how people see her and treat her differently. Because I often forget – she’s Carly to me! A vibrant, fun and funny friend, who is interested in many of the things I am.
I forget when we walk down a street together, or walk into a crowded restaurant, and people stare. Blatantly! I never remember why….I’m always so self conscious when it happens - “do I have my skirt tucked into my undies?” or “Do I have bird poo in my hair that I didn’t notice??” Oh no, I forgot, my friend is red and shiny….
This realisation, which also occurs at times when I read comments and tweets directed at her from the broader community, reminds me about how tiring it must be for her to be nice and pleasant in the face of such stares, comments and treatment by strangers, and how amazing it is that she does not react as most people would automatically react in such a situation. Given the volume of comments, intrusions and stares, she seems super human to me to withstand the Chinese water torture that is the constant drip drip drip of abuse and horrendously thoughtless comments. How lucky so many people think they are, to be in a position to judge someone else, because of their appearance.
I have also had a couple of different friends of mine talk to me about Carly and her story, and ask after her as you might after someone you know is in the hospital or someone going through some horrible time. It stops me in my thoughts, and makes me wonder if she may have been in an accident I didn’t know about, and thus the voice of concern. But then I always just mention that Carly is just living her life, just like everyone else – maybe I am too flippant, but I don’t see her as any different, in all seriousness! She’s working, socialising, chipping away at goals and dreams, writing, raising awareness for the things important to her, and things that matter and that should matter to all of us.
I have been told that because of my working history in disability and mental health, and my varied roles as a Social Worker, that my views are different to most people. That the average person doesn’t have the experience with people with disabilities that I do, and so it’s an unusual perspective. But I disagree.
You don’t need experience with difference to treat people as you would want to be treated. With dignity and respect. You don’t need a degree in disability to have empathy. You don’t need to work in the industry to have gained a glimpse into the experience, and recognise that people are people, regardless of each person’s range of abilities and challenges.
Am I wrong?
I wonder about people who are rude or horrible to Carly. Do they really not know anyone with a physical or intellectual or mental health difference? Really? The stats about our population would suggest otherwise. And so then I am even more baffled by people’s treatment of others.
I am endlessly in awe of Carly’s patience and resilience in standing up for herself, and other people with a visible difference. But she is still Carly to me! I will always take the piss out of her for her different music tastes and her complete ignorance about sports, just as I would anyone else. I will challenge her on things I don’t agree with, just as I would with any other friend. And I will banter and laugh along with her at the range of things we come across every day. Because surely we are all the same, in the end."